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>>WELCOME TO DAY 2

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BE PATIENT RESPECTING THE

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ADDITIONAL TIME NEEDED TO

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FORELATE A MESSAGE AND MOST

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IMPORTANTLY, PLEASE DO NOT SPEAK

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OVER THEM.

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POINT 3, IF YOU WILL SHOW THE

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SLIDE, PLEASE.

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FOR THOSE OF YOU WHO NEED A

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CURRENT AGENDA, YOU CAN FIND IT

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ON THE NIDCD WEBSITE AT THIS

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LINK.

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AND ALSO I THINK IT IS ATTACHED

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TO THE VIDEOCAST.

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IF YOU HAVE TECHNICAL PROBLEMS,

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WE ARE GIVING YOU TWO NAMES.

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YOU CAN EITHER E-MAIL TANJI OR

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CALL CHRIS ADAMS AT THAT PHONE

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NUMBER.

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AND, I GUESS A FINAL COMMENT

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WHILE TAN GEE IS TAKING THAT

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SLIDE DOWN.

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I WANTED TO SAY THANKS AGAIN TO

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ALL OF YOU FOR YOUR

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PARTICIPATION IN AND YOUR INPUT

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AND WE ARE READY TO GET STARTED.

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AND I THINK AS WE MOVE INTO, AS

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WE DID YESTERDAY, IF YOU'RE NOT

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SPEAKING, PLEASE TURN YOUR

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CAMERA OFF AND PLEASE MUTE.

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AND THEN THE SPEAKERS SHOULD

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APPEAR AT THE TOP OF THE SCREEN.

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SO, I'M TURNING IT OVER TO

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CONNIE.

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>>CONNIE KASARI: I'M
LOOKING

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FORWARD TO A EXCITING AND RICH

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DISCUSSION TODAY.

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WE ARE GOING TO START OFF WITH

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SESSION 2, RESEARCH DESIGNS,

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METHODS FOR INTERVENTION

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STUDIES.

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WE ARE GOING TO START WITH AN

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OVERVIEW OF COMBINED TREATMENTS

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BY LARRY SCAHILL.

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>>LARRY SCAHILL: YOU'RE
MUTED,,

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AND WE SUCCESSFULLY DID THIS A

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MINUTE AGO.

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>>JUDITH COOPER: WE DON'T
HEAR

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YOU.

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YOUR ICON IS NOT CLICKED.

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>>FELICE: WE'LL SEE WHAT
WE CAN

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DO.

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GIVE ME ONE SECOND TO LOOK FOR

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HIM.

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I CAN ONLY ASK HIM TO UNMUTE

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HIMSELF.

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I CAN'T DO IT.

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>>CONNIE KASARI: I'M
WONDERING

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IF WE CAN TAKE AWAY THE BOXES

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EXCEPT FOR THE PEOPLE WHO ARE IN

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THIS SESSION THAT WILL HAVE

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THEIR CAMERAS ON?

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THAT MIGHT BE LESS DISTRACTING.

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LARRY, IF THERE IS SOMETHING I

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CAN DO TO HELP, LET ME KNOW,

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ALTHOUGH I'M PROBABLY THE LEAST

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TECHNOLOGICALLY ADVANCED IN THIS

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GROUP.

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>>FELICE: I DON'T KNOW IF
HE

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CAN HEAR YOU.

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CAN YOU HEAR US?

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>>JUDITH COOPER: I CAN'T
SEEM

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TO GET RID OF THE BLACK BOX ON

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THE SCREEN.

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CHRIS, IS THAT YOU?

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>>FELICE: YOU DID IT FOR
YOUR

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WORKSTATION.

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YOU CAN'T DO IT FOR EVERYONE.

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>>CONNIE KASARI: I SEE.

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>>JUDITH COOPER: SO IF I
STOP

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MY VIDEO, DOES THAT HELP?

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LET ME SEE.

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>>FELICE: IT WOULDN'T
MATTER.

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I WOULD RECOMMEND THAT HE GO OUT

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AND COME BACK IN, IF HE HAS A

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PROBLEM.

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>>CONNIE KASARI: DID YOU
HEAR

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THAT?

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CAN YOU GO OUT AND START OVER

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AGAIN?

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>>JUDITH COOPER: HE HAS
ANOTHER

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CAMERA.

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00:05:55,920 --> 00:05:59,920
NOW LARRY, CAN YOU SPEAK?

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>>LARRY SCAHILL: I JUST

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RETREATED TO LAPTOP.

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THERE WAS A BOX COVERING THE

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PLACE WHERE YOU USUALLY SEE THE

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UNMUTE BUTTON.

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IT SAYS TYPE HERE FOR SEARCH.

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LET'S SEE IF THIS WORKS.

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>>CONNIE KASARI: GREAT, I
SEE

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YOUR SCREEN.

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BUT WE DON'T WANT THAT.

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>>LARRY SCAHILL: HOW IS
THAT?

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LET'S GET THIS GOING.

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SO I HAVE ABOUT NINE SLIDES AND

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I'LL TRY TO TALK FAST AND TRY

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NOT TO REHASH.

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BUT, USUAL STATEMENT ABOUT

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DISCLOSURES AND I'M WELL-TRAINED

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WELL-TRAINED.

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AND SO -- THIS IS A WONDERFUL

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META-ANALYSIS BY MICHAEL AND

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COMPANY.

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I WON'T GO INTO DETAIL.

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I WANT TO MAKE A COUPLE OF

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POINTS BECAUSE IT'S A STEP UP TO

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WHERE WE ARE GOING.

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FAIRLY LARGE SAMPLE, 60 STUDIES.

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OVER ALL SMALL BUT SIGNIFICANT

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EFFECT OF LANGUAGE.

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NOW THIS IS LANGUAGE

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ACROSS-THE-BOARD, NOT JUST

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MINIMALLY VERBAL.

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BUT NOTICE, LOWER AGE EQUIVALENT

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SCORES, WEAKER EFFECTS.

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WE ARE NOT DOING VERY WELL.

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INTERVENTION INTENSITY, DOSE,

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TYPE OF TREATMENT, AUTISM

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SEVERITY, CHRONOLOGICAL AGE,

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DIDN'T SEEM TO MATTER.

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WHAT DID SEEM TO MATTER IS

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WHETHER IT WAS DELIVERED BY A

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CLINICIAN OR A CLINICIAN+

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CAREGIVER.

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I JUST MENTIONED THROUGH A

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HAMPTON AND KAISER, THEIR

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ANALYSIS, META-ANALYSIS SHOWED

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SIMILAR RESULTS BUT THE LARGEST

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EFFECT WAS CLINICIAN PLUS

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CAREGIVER.

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SO, I'M TALKING ABOUT COMBINED

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TREATMENTS.

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I'M NOT GOING TO TALK ABOUT STEP

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WEDGE AND MOST DESIGN, SMART

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DESIGN.

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I'M NOT GOING TO TALK ABOUT ANY

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OF THAT.

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I'LL LEAVE THAT TO OTHERS.

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BUT I WANT TO EMPHASIZE THAT I

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THINK IT'S TIME TO MOVE TO

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COMBINED TREATMENTS.

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AND I HOPE TO SELL THE IDEA.

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I'M GOING TO GIVE A FEW

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EXAMPLES.

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THOSE EXAMPLES ARE NOT TO

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PERSUADE JUST TO ILLUSTRATE.

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WHAT THE META-ANALYSIS SHOWED,

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OUR MAJOR FAULTS HAVE BEEN.

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MANY STUDIES IN THE 60 STUDY

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META-ANALYSIS, THEY DID NOT USE

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BLINDED ASSESSMENT.

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OFTENTIMES NOT CLEAR ENTRY

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CRITERIA.

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STILL BIG VARIABILITY.

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AND A LOT OF ATTRITION.

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LOTS OF MISSING DATA.

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AND IT TURNS OUT THAT MANY OF

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THESE RANDOMIZED TRIALS DID NOT

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USE INTENT TO TREAT ANALYSIS.

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SO, DO WE NEED TO TALK ABOUT NEW

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DESIGNS OR DO WE NEED TO TALK

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ABOUT MULTIMODAL TREATMENTS?

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I'M RIGHT NOW I'M THE LATTER.

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STUDY OF COMBINED TREATMENTS

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DOES NOT INHERENTLY MEAN YOU

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HAVE TO HAVE MORE COMPLICATED

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DESIGNS.

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IN FACT, STUDYING COMBINED

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TREATMENTS IS CHALLENGING

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ENOUGH.

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SO, STRAIGHTFORWARD DESIGNS,

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COMPLICATED BY COMBINED

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TREATMENTS.

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THIS IS MY FIRST FORAY INTO THIS

186
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IDEA OF COMBINING MODALITIES.

187
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SO THIS CAME FROM A PRACTICE

188
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GROUP OF THE ASSOCIATION OF

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BEHAVIOR ANALYSIS INTERNATIONAL.

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I WON'T GO INTO THE CRAZY DETAIL

191
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OF THIS SLIDE.

192
00:09:54,400 --> 00:09:57,200
BUT YOU CAN SEE THAT THEY ARE

193
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ADVANCING IN THIS WHITE PAPER

194
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THE IDEA THAT SPEECH-LANGUAGE

195
00:10:01,200 --> 00:10:02,440
PATHOLOGISTS AND BEHAVIOR

196
00:10:02,440 --> 00:10:04,920
ANALYSTS BRING SOMETHING UNIQUE

197
00:10:04,920 --> 00:10:06,720
AND IMPORTANT THAT COULD

198
00:10:06,720 --> 00:10:09,360
ACTUALLY BE BLENDED.

199
00:10:09,360 --> 00:10:11,520
AND TO THE BETTERMENT OF AN

200
00:10:11,520 --> 00:10:12,520
INTERVENTION.

201
00:10:12,520 --> 00:10:15,080
WE ARE DOING A PILOT STUDY HERE

202
00:10:15,080 --> 00:10:18,320
OF WHERE WE ARE TRYING TO SEE

203
00:10:18,320 --> 00:10:26,840
WHAT ADDED VALUE THERE CAN BE --

204
00:10:26,840 --> 00:10:28,280
ABAI BASED LANGUAGE INTERVENTION

205
00:10:28,280 --> 00:10:32,040
FOR MINIMALLY VERBAL CHILDREN

206
00:10:32,040 --> 00:10:33,440
WITH ADDITIONAL CONSULTATION

207
00:10:33,440 --> 00:10:35,400
FROM A SPEECH-LANGUAGE

208
00:10:35,400 --> 00:10:35,840
PATHOLOGIST.

209
00:10:35,840 --> 00:10:38,240
SO ANOTHER WAY TO THINK ABOUT

210
00:10:38,240 --> 00:10:41,400
THIS IS LANGUAGE INTERVENTION

211
00:10:41,400 --> 00:10:43,120
PLUS DRUGS.

212
00:10:43,120 --> 00:10:46,080
OUTSIDE OF THE WORLD OF LANGUAGE

213
00:10:46,080 --> 00:10:49,000
INTERVENTION AND THE WORLD OF

214
00:10:49,000 --> 00:10:50,880
ANXIETY AND IN THE GENERAL

215
00:10:50,880 --> 00:10:53,320
PEDIATRIC POPULATION, DEPRESSION

216
00:10:53,320 --> 00:10:56,240
IN THE GENERAL PEDIATRIC

217
00:10:56,240 --> 00:10:56,960
POPULATION.

218
00:10:56,960 --> 00:10:59,120
AND IN AUTISM IN DISRUPTIVE

219
00:10:59,120 --> 00:10:59,840
BEHAVIOR.

220
00:10:59,840 --> 00:11:02,520
THERE IS MILEAGE FOR COMBINING

221
00:11:02,520 --> 00:11:05,280
BEHAVIORAL INTERVENTIONS WITH

222
00:11:05,280 --> 00:11:05,840
DRUGS.

223
00:11:05,840 --> 00:11:08,640
SO, I'M SURE EVERYBODY IS AWARE

224
00:11:08,640 --> 00:11:10,200
OF THE PAPER THAT WAS PUBLISHED

225
00:11:10,200 --> 00:11:15,120
IN THE FALL OF 21 ON INTERNASAL

226
00:11:15,120 --> 00:11:16,000
OXYTOCIN.

227
00:11:16,000 --> 00:11:17,800
A LARGE STUDY THAT SHOWED

228
00:11:17,800 --> 00:11:19,600
ABSOLUTELY NOTHING.

229
00:11:19,600 --> 00:11:23,040
AND OUT OF THIS -- PART OF THIS

230
00:11:23,040 --> 00:11:26,320
QUOTE IS CUT OFF.

231
00:11:26,320 --> 00:11:31,240
THIS IS FROM LARRY YOUNG AND

232
00:11:31,240 --> 00:11:32,960
CHARLES FORD IN AN EDITORIAL

233
00:11:32,960 --> 00:11:35,320
THEY WROTE AFTERWARDS.

234
00:11:35,320 --> 00:11:37,920
HE SAID THAT THEY FOUND NO

235
00:11:37,920 --> 00:11:42,120
EFFECT, NO SURPRISE TO THEM

236
00:11:42,120 --> 00:11:47,360
BECAUSE OXYTOCIN DOES NOT

237
00:11:47,360 --> 00:11:47,960
FACILITATE LEARNING ALL BY

238
00:11:47,960 --> 00:11:48,960
ITSELF.

239
00:11:48,960 --> 00:11:50,760
IN FUTURE TRIALS, OXYTOCIN

240
00:11:50,760 --> 00:11:54,200
SHOULD BE PAIRED WITH BEHAVIOR

241
00:11:54,200 --> 00:11:54,920
THERAPY.

242
00:11:54,920 --> 00:12:00,920
AND HERE IS AN EDITORIAL BY DAN

243
00:12:00,920 --> 00:12:01,760
GIVEN WIND IN THE NEW ENGLAND

244
00:12:01,760 --> 00:12:04,040
JOURNAL AND THE SAME ISSUE.

245
00:12:04,040 --> 00:12:10,520
HE SAID, MAYBE THEY HAD TOO WIDE

246
00:12:10,520 --> 00:12:12,400
OF AVERAGE RANGE AND MAYBE THEY

247
00:12:12,400 --> 00:12:14,560
NEED BETTER MEASUREMENT BUT

248
00:12:14,560 --> 00:12:16,160
OXYTOCIN WAS NOT PAIRED WITH

249
00:12:16,160 --> 00:12:16,960
BEHAVIORAL INTERVENTION.

250
00:12:16,960 --> 00:12:20,600
HE IS SAYING DON'T GIVE UP ON

251
00:12:20,600 --> 00:12:22,760
OXYTOCIN JUST YET, POINTING TO

252
00:12:22,760 --> 00:12:26,240
THE IDEA OF COMBINED TREATMENT.

253
00:12:26,240 --> 00:12:28,280
HERE IS POSSIBLE COMBINATION.

254
00:12:28,280 --> 00:12:29,160
AGAIN, IT'S AN EXAMPLE.

255
00:12:29,160 --> 00:12:33,240
IT'S NOT -- NOT TRYING TO PER

256
00:12:33,240 --> 00:12:33,880
ZAID.

257
00:12:33,880 --> 00:12:37,520
BUT RICHARD FRY AND COMPANY

258
00:12:37,520 --> 00:12:41,800
PUBLISHED A PAPER ON LEUKOBORE

259
00:12:41,800 --> 00:12:43,160
IN THAT SHOWED IMPROVEMENT IN

260
00:12:43,160 --> 00:12:43,880
VERBAL COMMUNICATION.

261
00:12:43,880 --> 00:12:46,480
I WILL ADD THESE WERE NOT

262
00:12:46,480 --> 00:12:47,720
MINIMALLY VERBAL CHILDREN BUT IT

263
00:12:47,720 --> 00:12:52,000
WAS SUPERIOR TO PLACEBO USING A

264
00:12:52,000 --> 00:12:54,520
STANDARDIZED LANGUAGE OUTCOME

265
00:12:54,520 --> 00:12:55,200
MEASURE.

266
00:12:55,200 --> 00:12:57,520
AND WE DID A STRUCTURED

267
00:12:57,520 --> 00:12:59,800
INTERVENTION WITH A VERY SIMILAR

268
00:12:59,800 --> 00:13:01,920
POPULATION, MODERATE LANGUAGE

269
00:13:01,920 --> 00:13:05,880
DELAY, SHOWING THAT THIS

270
00:13:05,880 --> 00:13:06,920
STRUCTURED INTERVENTION WAS

271
00:13:06,920 --> 00:13:08,200
BETTER THAN TREATMENT AS USUAL.

272
00:13:08,200 --> 00:13:10,240
WHY NOT COMBINE THEM?

273
00:13:10,240 --> 00:13:11,520
AGAIN, NOT PERSUADE THIS

274
00:13:11,520 --> 00:13:14,160
PARTICULAR IDEA BUT JUST THE

275
00:13:14,160 --> 00:13:14,880
IDEA.

276
00:13:14,880 --> 00:13:17,240
SO, POSSIBLE COMBINATIONS.

277
00:13:17,240 --> 00:13:18,680
LANGUAGE INTERVENTION.

278
00:13:18,680 --> 00:13:22,400
YOU KNOW THE LIST.

279
00:13:22,400 --> 00:13:24,400
DELIGHTED TO HEAR SO MUCH

280
00:13:24,400 --> 00:13:27,880
YESTERDAY ABOUT THE USE OF

281
00:13:27,880 --> 00:13:28,840
AUGMENTED DEVICES.

282
00:13:28,840 --> 00:13:30,760
I THINK THEY HAVE COME A LONG

283
00:13:30,760 --> 00:13:32,080
WAY SINCE I FIRST HEARD ABOUT

284
00:13:32,080 --> 00:13:34,880
THEM 20 YEARS AGO.

285
00:13:34,880 --> 00:13:38,760
AND BUT WHAT COULD THING A

286
00:13:38,760 --> 00:13:40,280
MENITATION STRATEGY BE?

287
00:13:40,280 --> 00:13:42,640
IT COULD BE A DRUG.

288
00:13:42,640 --> 00:13:47,120
IT COULD BE YOU HAVE A LANGUAGE

289
00:13:47,120 --> 00:13:49,920
INTERVENTION AND YOU ADD

290
00:13:49,920 --> 00:13:50,720
AUGMENTED COMMUNICATION, OR

291
00:13:50,720 --> 00:13:53,320
WONDERFUL THINGS WE HEARD ABOUT

292
00:13:53,320 --> 00:13:54,800
TECHNOLOGY WITH THE USE OF APPS

293
00:13:54,800 --> 00:13:58,080
AND OTHER THINGS AS A ADDITIVE

294
00:13:58,080 --> 00:14:03,760
TO THE LANGUAGE INTERVENTION.

295
00:14:03,760 --> 00:14:04,040
THANK YOU.

296
00:14:04,040 --> 00:14:05,680
>>CONNIE KASARI: THANK
YOU.

297
00:14:05,680 --> 00:14:07,640
YOU WERE SPOT ON TIME WISE,

298
00:14:07,640 --> 00:14:07,840
LARRY.

299
00:14:07,840 --> 00:14:09,480
THANK YOU.

300
00:14:09,480 --> 00:14:11,040
SO NOW YOU HAVE TO STOP SHARING

301
00:14:11,040 --> 00:14:13,640
AND WE'RE GOING TO MOVE TO THE

302
00:14:13,640 --> 00:14:18,760
NEXT TALK, WHICH WILL BE DANIEL

303
00:14:18,760 --> 00:14:22,760
ALMIRALL TALKING ABOUT

304
00:14:22,760 --> 00:14:23,920
MULTILEVEL ADAPTIVE

305
00:14:23,920 --> 00:14:26,920
INTERVENTIONS, OPTIMIZING HOW WE

306
00:14:26,920 --> 00:14:27,800
TAILOR INTERVENTION TO THE

307
00:14:27,800 --> 00:14:30,800
UNIQUE AND CHANGING NEEDS OF

308
00:14:30,800 --> 00:14:32,320
EACH INDIVIDUAL AND THEIR

309
00:14:32,320 --> 00:14:33,560
ENVIRONMENT.

310
00:14:33,560 --> 00:14:37,040
I SHOWED THIS YESTERDAY.

311
00:14:37,040 --> 00:14:39,520
>>DANIEL ALMIRALL CAN YOU
HEAR

312
00:14:39,520 --> 00:14:39,720
ME?

313
00:14:39,720 --> 00:14:41,400
CAN YOU SEE THE SLIDES I'M

314
00:14:41,400 --> 00:14:43,640
PUTTING UP RIGHT NOW AND THEN

315
00:14:43,640 --> 00:14:44,600
HOW ABOUT NOW?

316
00:14:44,600 --> 00:14:47,120
>>CONNIE KASARI: NOW WE
SEE --

317
00:14:47,120 --> 00:14:48,440
NOW WE SEE IT.

318
00:14:48,440 --> 00:14:49,080
OKAY.

319
00:14:49,080 --> 00:14:50,120
GOOD.

320
00:14:50,120 --> 00:14:52,920
>>DANIEL ALMIRALL: I GOT
7

321
00:14:52,920 --> 00:14:54,760
MINUTES READY GO!

322
00:14:54,760 --> 00:14:55,560
MY GOAL IS TO INTRODUCE THIS

323
00:14:55,560 --> 00:14:57,560
IDEA OF ADAPTIVE INTERVENTIONS

324
00:14:57,560 --> 00:15:00,200
AND I'M GOING TO GO IN 7 MINUTES

325
00:15:00,200 --> 00:15:01,920
FROM THE PAST STRAIGHT THROUGH

326
00:15:01,920 --> 00:15:03,360
THE FUTURE.

327
00:15:03,360 --> 00:15:03,920
OKAY?

328
00:15:03,920 --> 00:15:05,680
HERE WE GO.

329
00:15:05,680 --> 00:15:07,360
SO HERE IS WHAT I'M GOING TO TRY

330
00:15:07,360 --> 00:15:08,480
TO DO IN 7 MINUTES.

331
00:15:08,480 --> 00:15:10,520
I'M GOING TO SHOW YOU AN EXAMPLE

332
00:15:10,520 --> 00:15:12,600
OF AN OLDER ADAPTIVE

333
00:15:12,600 --> 00:15:14,480
INTERVENTION IN AUTISM.

334
00:15:14,480 --> 00:15:15,280
YOU SAW A LITTLE BIT ABOUT IT

335
00:15:15,280 --> 00:15:15,520
YESTERDAY.

336
00:15:15,520 --> 00:15:16,920
I'M GOING TOY SHOULD YOU AN

337
00:15:16,920 --> 00:15:19,600
EXAMPLE OF AN OLDER SEQUENTIALLY

338
00:15:19,600 --> 00:15:21,720
RANDOMIZED TRIAL THAT WAS USED

339
00:15:21,720 --> 00:15:23,720
TO OPTIMIZE THIS ADAPTIVE

340
00:15:23,720 --> 00:15:24,960
INTERVENTION AND THEN I'M GOING

341
00:15:24,960 --> 00:15:26,080
TO SPEND THREE SLIDES ON WHAT I

342
00:15:26,080 --> 00:15:29,080
THINK THE FUTURE IS AND IT'S

343
00:15:29,080 --> 00:15:29,840
PRETTY EXCITING.

344
00:15:29,840 --> 00:15:30,480
ALL RIGHT.

345
00:15:30,480 --> 00:15:31,600
SO, I THINK YOU MIGHT HAVE SEEN

346
00:15:31,600 --> 00:15:33,480
THIS YESTERDAY.

347
00:15:33,480 --> 00:15:36,200
SO THE SETUP HERE IS, THESE ARE

348
00:15:36,200 --> 00:15:38,000
CHILDREN WITH AUTISM WHO ARE

349
00:15:38,000 --> 00:15:39,080
MINIMALLY VERBAL.

350
00:15:39,080 --> 00:15:40,040
THAT'S THE PHRASE WE WERE USING

351
00:15:40,040 --> 00:15:40,640
AT THE TIME.

352
00:15:40,640 --> 00:15:42,360
I KNOW YESTERDAY WE WERE HAVING

353
00:15:42,360 --> 00:15:43,320
CONVERSATIONS ABOUT THINKING

354
00:15:43,320 --> 00:15:44,640
MORE CAREFULLY ABOUT THE

355
00:15:44,640 --> 00:15:46,080
LANGUAGE AROUND THIS.

356
00:15:46,080 --> 00:15:48,960
AND IN THIS PARTICULAR ADAPTIVE

357
00:15:48,960 --> 00:15:49,520
INTERVENTION, THIS IS NOT A

358
00:15:49,520 --> 00:15:50,480
STUDY I'M SHOWING YOU.

359
00:15:50,480 --> 00:15:52,760
THIS IS AN INTERVENTION A

360
00:15:52,760 --> 00:15:54,000
CLINICIAN WOULD DO.

361
00:15:54,000 --> 00:15:56,320
WE WOULD PROVIDE IN STAGE I SOME

362
00:15:56,320 --> 00:15:56,800
INTERVENTION.

363
00:15:56,800 --> 00:15:59,520
IN THIS EXAMPLE, IT'S JASPER.

364
00:15:59,520 --> 00:16:00,760
AND THEN WE WOULD ASSESS

365
00:16:00,760 --> 00:16:02,480
RESPONSE STATUS AT THE END OF 12

366
00:16:02,480 --> 00:16:04,200
WEEKS USING SOME TOOL THAT IS

367
00:16:04,200 --> 00:16:06,200
ALSO A PART OF INTERVENTION.

368
00:16:06,200 --> 00:16:07,080
THAT'S KEY, OKAY?

369
00:16:07,080 --> 00:16:10,760
WE CALL THAT A TAILORING

370
00:16:10,760 --> 00:16:11,000
VARIABLE.

371
00:16:11,000 --> 00:16:12,040
IN THIS PARTICULAR EXAMPLE, IF

372
00:16:12,040 --> 00:16:14,440
THE KID WAS A RESPONDER, WE STAY

373
00:16:14,440 --> 00:16:15,640
THE COURSE WITH JASPER.

374
00:16:15,640 --> 00:16:18,840
BUT IF THE KIDDO IS A SLOWER

375
00:16:18,840 --> 00:16:20,640
RESPONDER, WE MIGHT AUGMENT

376
00:16:20,640 --> 00:16:23,800
WITH, IN THIS CASE, IT WAS USING

377
00:16:23,800 --> 00:16:26,760
A DEVICE BUT YOU COULD IMAGINE

378
00:16:26,760 --> 00:16:28,320
ADAPTIVE INTERVENTIONS LIKE THIS

379
00:16:28,320 --> 00:16:30,280
TAILORING USING OTHER

380
00:16:30,280 --> 00:16:31,280
INTERVENTION OPTIONS SUCH AS

381
00:16:31,280 --> 00:16:32,360
MEDICATION, WHICH IS WHAT LARRY

382
00:16:32,360 --> 00:16:35,320
WAS JUST TALKING ABOUT, OR EVEN

383
00:16:35,320 --> 00:16:36,760
OTHER BEHAVIORAL INTERVENTIONS.

384
00:16:36,760 --> 00:16:39,520
BUT MY PURPOSE IN THESE 30

385
00:16:39,520 --> 00:16:42,720
SECONDS WAS TO EXPLAIN WHAT IS

386
00:16:42,720 --> 00:16:44,000
AN ADAPTIVES INTERVENTION IN 30

387
00:16:44,000 --> 00:16:44,480
SECONDS?

388
00:16:44,480 --> 00:16:46,240
THIS IS AN EXAMPLE OF, IT

389
00:16:46,240 --> 00:16:47,440
DOESN'T EVEN HAVE TO BE TWO

390
00:16:47,440 --> 00:16:47,840
STAGES.

391
00:16:47,840 --> 00:16:50,200
IT COULD BE 5 STAGES AND ALL THE

392
00:16:50,200 --> 00:16:51,840
KIDDOS DON'T EVEN NEED TO

393
00:16:51,840 --> 00:16:52,840
TRANSITION ALL AT 12 WEEKS.

394
00:16:52,840 --> 00:16:55,000
WE MIGHT HAVE SOME KIDDOS

395
00:16:55,000 --> 00:16:55,800
TRANSITIONING EARLIER VERSUS

396
00:16:55,800 --> 00:16:57,680
LATER, DEPENDING ON HOW THEY ARE

397
00:16:57,680 --> 00:16:57,880
DOING.

398
00:16:57,880 --> 00:17:00,040
THE SKY IS THE LIMIT.

399
00:17:00,040 --> 00:17:00,600
NEXT SLIDE.

400
00:17:00,600 --> 00:17:04,840
THOSE OF YOU ON THE CALL

401
00:17:04,840 --> 00:17:05,880
MIGHT -- AND ESPECIALLY NIH, WE

402
00:17:05,880 --> 00:17:07,880
HAVE TO THINK VERY CAREFULLY

403
00:17:07,880 --> 00:17:08,840
ABOUT THE THREE DIFFERENT WAYS

404
00:17:08,840 --> 00:17:11,440
WE CAN STRUCTURE RESEARCH ON

405
00:17:11,440 --> 00:17:12,320
ADAPTIVE INTERVENTION SYSTEM.

406
00:17:12,320 --> 00:17:14,360
ONE GROUP OF PEOPLE, EARLY-STAGE

407
00:17:14,360 --> 00:17:17,920
INVESTIGATORS MIGHT BE IN THE

408
00:17:17,920 --> 00:17:18,360
PILOTING FEASIBILITY

409
00:17:18,360 --> 00:17:18,800
ACCESSIBILITY STAGE.

410
00:17:18,800 --> 00:17:20,640
A SECOND GROUP OF INVESTIGATORS

411
00:17:20,640 --> 00:17:22,640
MIGHT BE IN THE OPTIMIZING STAGE

412
00:17:22,640 --> 00:17:24,080
AND A THIRD GROUP OF

413
00:17:24,080 --> 00:17:25,960
INVESTIGATORS MIGHT BE READY TO

414
00:17:25,960 --> 00:17:28,080
EVALUATE AN ADAPTIVE

415
00:17:28,080 --> 00:17:28,400
INTERVENTION.

416
00:17:28,400 --> 00:17:29,360
THEY HAVE SOMETHING LIKE THIS IN

417
00:17:29,360 --> 00:17:30,520
THEIR HANDS AND THEY ARE READY

418
00:17:30,520 --> 00:17:32,120
TO SAY, JUST LIKE LARRY SAID,

419
00:17:32,120 --> 00:17:33,920
THEY ARE READY TO SAY, IS THIS

420
00:17:33,920 --> 00:17:35,160
BETTER THAN TREATMENT AS USUAL?

421
00:17:35,160 --> 00:17:38,600
I WANTED TO SHOW YOU NUMBER 3

422
00:17:38,600 --> 00:17:39,920
FIRST BECAUSE ALL OF YOU KNOW

423
00:17:39,920 --> 00:17:41,360
HOW TO DO NUMBER 3.

424
00:17:41,360 --> 00:17:44,760
IF WE WERE DOING NUMBER 3, WITH

425
00:17:44,760 --> 00:17:46,760
THE ADAPTIVE INTERVENTION I

426
00:17:46,760 --> 00:17:48,880
SHOWED EARLIER, THIS WOULD BE A

427
00:17:48,880 --> 00:17:50,720
VANILLA BUT VERY IMPORTANT, VERY

428
00:17:50,720 --> 00:17:52,000
POWERFUL RANDOMIZED TRIAL WHERE

429
00:17:52,000 --> 00:17:55,080
I WOULD COMPARE MY ADAPTIVE

430
00:17:55,080 --> 00:17:56,320
INTERVENTION VERSUS SOME

431
00:17:56,320 --> 00:17:57,040
TREATMENT AS USUAL.

432
00:17:57,040 --> 00:17:58,040
NOTHING WRONG WITH THIS.

433
00:17:58,040 --> 00:17:59,680
IT'S IMPORTANT AND IT REMAINS

434
00:17:59,680 --> 00:18:01,320
THE GOLD STANDARD FOR

435
00:18:01,320 --> 00:18:02,160
EVALUATION.

436
00:18:02,160 --> 00:18:04,000
BUT WHAT IF YOU'RE IN THE SECOND

437
00:18:04,000 --> 00:18:04,200
GROUP?

438
00:18:04,200 --> 00:18:05,640
WHAT IF YOU WANT TO OPTIMIZE?

439
00:18:05,640 --> 00:18:07,080
THERE YOU WANT TO REACH FOR A

440
00:18:07,080 --> 00:18:08,520
DIFFERENT KIND OF TRIAL DESIGN.

441
00:18:08,520 --> 00:18:10,760
ONE OF THE BIGGEST PROBLEMS WE

442
00:18:10,760 --> 00:18:12,520
HAVE IN OUR SCIENCE IS EVERYBODY

443
00:18:12,520 --> 00:18:14,400
REACHES FOR A RANDOMIZED TRIAL

444
00:18:14,400 --> 00:18:16,160
DESIGN TO ANSWER ALL QUESTIONS

445
00:18:16,160 --> 00:18:17,720
UNDER THE SUN BUT THAT SHOULD

446
00:18:17,720 --> 00:18:20,000
NOT BE THAT WAY.

447
00:18:20,000 --> 00:18:22,120
SO HERE IS ONE OF MANY TOOLS YOU

448
00:18:22,120 --> 00:18:24,000
CAN REACH FOR IS CALLED THE

449
00:18:24,000 --> 00:18:24,200
SMART.

450
00:18:24,200 --> 00:18:27,480
AND HERE IS A SMART THAT WE USED

451
00:18:27,480 --> 00:18:29,520
TO COME UP WITH THE ADAPTIVE

452
00:18:29,520 --> 00:18:31,040
INTERVENTION WE SHOWED YOU

453
00:18:31,040 --> 00:18:32,200
ERPER, OR ONE LIKE IT.

454
00:18:32,200 --> 00:18:34,120
THIS IS AN OLD STUDY NOW.

455
00:18:34,120 --> 00:18:35,560
YOU SEEN ME GIVE TALKS ON THIS

456
00:18:35,560 --> 00:18:36,800
FOR YEARS, BUT IT'S IMPORTANT

457
00:18:36,800 --> 00:18:38,000
BECAUSE IT BRINGS YOU UP TO

458
00:18:38,000 --> 00:18:39,880
SPEED BEFORE I TELL YOU WHAT THE

459
00:18:39,880 --> 00:18:40,240
FUTURE WILL BE.

460
00:18:40,240 --> 00:18:43,000
IN THIS STUDY, WE RANDOMIZED

461
00:18:43,000 --> 00:18:45,040
KIDDOS AT STAGE 1 TO WHETHER OR

462
00:18:45,040 --> 00:18:47,680
NOT YOU, IN THE CONTEXT OF

463
00:18:47,680 --> 00:18:49,640
JASPER, ALL THE KIDDOS GET

464
00:18:49,640 --> 00:18:50,760
JASPER, TO WHETHER OR NOT YOU

465
00:18:50,760 --> 00:18:52,440
GET THE DEVICE, AT STAGE I.

466
00:18:52,440 --> 00:18:55,040
WE WANTED TO KNOW AS A NISHANCE,

467
00:18:55,040 --> 00:18:58,200
DO ALL THE KIDS NEED THE DEVICE

468
00:18:58,200 --> 00:18:58,960
RIGHT OUT OF THE GATES?

469
00:18:58,960 --> 00:19:00,240
IF YOU DID NOT GET THE DEVICE

470
00:19:00,240 --> 00:19:01,960
AND YOU WERE A SLOWER RESPONDER,

471
00:19:01,960 --> 00:19:04,440
DO WE NEED TO ADD THE DEVICE

472
00:19:04,440 --> 00:19:04,640
LATER?

473
00:19:04,640 --> 00:19:06,160
SO WHAT ENDS UP HAPPENING IN A

474
00:19:06,160 --> 00:19:08,160
STUDY LIKE THIS, WE HAVE THREE

475
00:19:08,160 --> 00:19:08,480
INTERVENTIONS.

476
00:19:08,480 --> 00:19:10,120
WE HAVE ONE WHERE YOU NEVER GET

477
00:19:10,120 --> 00:19:12,960
THE DEVICE BUT IF YOU'RE SLOW

478
00:19:12,960 --> 00:19:14,120
RESPONDING, YOU AUGMENT WITH

479
00:19:14,120 --> 00:19:14,360
JASPER.

480
00:19:14,360 --> 00:19:16,760
YOU GO FROM 2-3 SESSIONS PER

481
00:19:16,760 --> 00:19:17,320
WEEK.

482
00:19:17,320 --> 00:19:18,720
WE HAVE A SECOND INTERVENTION

483
00:19:18,720 --> 00:19:21,120
WHERE YOU GET THE DEVICE

484
00:19:21,120 --> 00:19:21,360
UPFRONT.

485
00:19:21,360 --> 00:19:22,960
AND IF YOU'RE NOT DOING SO GOOD,

486
00:19:22,960 --> 00:19:24,800
YOU GO FROM 2-3 SESSIONS PER

487
00:19:24,800 --> 00:19:25,120
WEEK.

488
00:19:25,120 --> 00:19:29,840
AND THEN WE HAVE A THIRD PRE

489
00:19:29,840 --> 00:19:30,760
SENSION WHERE YOU DON'T GET THE

490
00:19:30,760 --> 00:19:32,000
DEVICE UPFRONT AND YOU GET THE

491
00:19:32,000 --> 00:19:34,280
DEVICE LATER IF YOU'RE A SLOW

492
00:19:34,280 --> 00:19:34,600
RESPONDER.

493
00:19:34,600 --> 00:19:37,560
I THINK YOU ALL HAVE READ THIS

494
00:19:37,560 --> 00:19:37,800
ARTICLE.

495
00:19:37,800 --> 00:19:38,800
THESE WERE TOOLS AT THE TIME WE

496
00:19:38,800 --> 00:19:39,760
WERE USING.

497
00:19:39,760 --> 00:19:41,280
THEY ARE OLDER NOW BUT STILL

498
00:19:41,280 --> 00:19:42,440
VERY NOVEL.

499
00:19:42,440 --> 00:19:44,680
AND HERE WE SHOWED PRETTY

500
00:19:44,680 --> 00:19:47,000
CLEARLY THAT INTRODUCING THE

501
00:19:47,000 --> 00:19:48,320
DEVICE EARLY AND INTENSIFYING

502
00:19:48,320 --> 00:19:50,640
GOING FROM 2-3 WEEKS FOR KIDDOS

503
00:19:50,640 --> 00:19:52,880
THAT ARE NOT -- THAT AREN'T

504
00:19:52,880 --> 00:19:54,760
RESPONDING AS WELL, WAS THE

505
00:19:54,760 --> 00:19:56,840
BETTER INTERVENTION TO IMPROVE

506
00:19:56,840 --> 00:19:57,720
LANGUAGE OUTCOMES.

507
00:19:57,720 --> 00:19:59,760
OKAY, WHAT IS THE FUTURE OF

508
00:19:59,760 --> 00:20:01,520
ADAPTIVE INTERVENTIONS IN

509
00:20:01,520 --> 00:20:02,000
AUTISM?

510
00:20:02,000 --> 00:20:03,440
I GOT TWO SLIDES LEFT.

511
00:20:03,440 --> 00:20:07,200
IN MY OPINION, WEED WANT TO GET

512
00:20:07,200 --> 00:20:09,640
SERIOUS ABOUT WHAT I CALL,

513
00:20:09,640 --> 00:20:10,760
MULTILEVEL ADAPTIVE

514
00:20:10,760 --> 00:20:11,120
INTERVENTIONS.

515
00:20:11,120 --> 00:20:12,640
I'LL SHOW YOU KIND OF WHAT I

516
00:20:12,640 --> 00:20:14,800
MEAN BECAUSE IT'S THE FUTURE, I

517
00:20:14,800 --> 00:20:16,880
DON'T REALLY HAVE A CONCRETE

518
00:20:16,880 --> 00:20:18,760
EXAMPLE BUT WE NEED TO GET

519
00:20:18,760 --> 00:20:19,360
SERIOUS ABOUT THIS.

520
00:20:19,360 --> 00:20:22,760
HOW DO WE THINK ABOUT THE

521
00:20:22,760 --> 00:20:23,440
ADAPTIVE INTERVENTION CONCEPT WE

522
00:20:23,440 --> 00:20:25,080
SHOWED A FEW MINUTES AGO.

523
00:20:25,080 --> 00:20:27,040
HOW DO WE THINK ABOUT THAT AT

524
00:20:27,040 --> 00:20:28,800
MULTIPLE LEVELS IN THE KIDDO'S

525
00:20:28,800 --> 00:20:29,200
LIFE?

526
00:20:29,200 --> 00:20:30,360
SO FOR EXAMPLE AT THE LEVEL OF A

527
00:20:30,360 --> 00:20:30,600
SCHOOL.

528
00:20:30,600 --> 00:20:32,040
AT THE LEVEL OF THE CLASSROOM,

529
00:20:32,040 --> 00:20:33,440
AT THE LEVEL OF THE FAMILY.

530
00:20:33,440 --> 00:20:39,720
JUST LIKE LARRY SAID, WE ARE

531
00:20:39,720 --> 00:20:40,640
MOVING DIFFERENT TREATMENTS USED

532
00:20:40,640 --> 00:20:41,440
AT DIFFERENT LEVELS.

533
00:20:41,440 --> 00:20:43,240
HOW DO YOU DO THAT ADAPTIVELY?

534
00:20:43,240 --> 00:20:44,360
THAT IS THE FUTURE.

535
00:20:44,360 --> 00:20:46,760
A SECOND FUTURE IS, HOW DO WE

536
00:20:46,760 --> 00:20:48,080
THINK ABOUT ADAPTIVE

537
00:20:48,080 --> 00:20:49,280
INTERVENTIONS IN REALTIME?

538
00:20:49,280 --> 00:20:51,760
JUST IN TIME ADAPTIVE

539
00:20:51,760 --> 00:20:52,360
INTERVENTIONS.

540
00:20:52,360 --> 00:20:54,760
SO DELIVERED THROUGH DICES,

541
00:20:54,760 --> 00:20:56,080
MOBILE DEVICES.

542
00:20:56,080 --> 00:20:58,800
AND THEN MULTIMODAL ADAPTIVE

543
00:20:58,800 --> 00:21:01,040
INTERVENTIONS IS WHEN THOSE TWO

544
00:21:01,040 --> 00:21:01,400
WORLDS COLLIDE.

545
00:21:01,400 --> 00:21:04,400
YOU CAN IMAGINE IN BETWEEN

546
00:21:04,400 --> 00:21:06,600
CLINIC VISITS, IN BETWEEN CLINIC

547
00:21:06,600 --> 00:21:08,040
VISITS, THE KIDDO MIGHT BE

548
00:21:08,040 --> 00:21:09,880
WORKING WITH A DEVICE AT HOME

549
00:21:09,880 --> 00:21:12,880
THAT IS IN BETWEEN THE CLINIC

550
00:21:12,880 --> 00:21:13,600
VISITS INTERVENING IN REALTIME

551
00:21:13,600 --> 00:21:15,440
TO IMPROVE THEIR OUTCOMES AND

552
00:21:15,440 --> 00:21:16,480
QUALITY OF LIFE.

553
00:21:16,480 --> 00:21:19,040
SO, IN THE MULTILEVEL ADAPTIVE

554
00:21:19,040 --> 00:21:20,880
INTERVENTION WORLD, IMAGINE

555
00:21:20,880 --> 00:21:23,720
PLAYGROUND INTERVENTIONS,

556
00:21:23,720 --> 00:21:24,800
CLASSROOMS AND INDIVIDUAL

557
00:21:24,800 --> 00:21:25,040
LEVELS.

558
00:21:25,040 --> 00:21:25,600
WE HAVE THEM.

559
00:21:25,600 --> 00:21:28,440
WE JUST HAVEN'T PUT THEM

560
00:21:28,440 --> 00:21:29,440
TOGETHER INTELLIGENTLY.

561
00:21:29,440 --> 00:21:30,760
AND THEN IN THE JUST IN TIME

562
00:21:30,760 --> 00:21:33,640
WORLD, WE HAVE THE DEVICES,

563
00:21:33,640 --> 00:21:35,200
BELIEVE IT OR NOT, THAT IS OLD

564
00:21:35,200 --> 00:21:35,600
NOW.

565
00:21:35,600 --> 00:21:37,800
WE KNOW WE CAN SENSOR IN

566
00:21:37,800 --> 00:21:40,320
REALTIME BUT THE QUESTION IS,

567
00:21:40,320 --> 00:21:42,160
HOW DO WE DELIVER INTERVENTIONS

568
00:21:42,160 --> 00:21:47,000
IN REALTIME INTELLIGENTLY AND

569
00:21:47,000 --> 00:21:49,040
ADAPTIVELY TO THE NEEDS OF THE

570
00:21:49,040 --> 00:21:50,240
KIDDO OR THEIR FAMILY?

571
00:21:50,240 --> 00:21:53,120
THANK YOU VERY MUCH FOR YOUR

572
00:21:53,120 --> 00:21:53,920
TIME TODAY.

573
00:21:53,920 --> 00:21:55,640
>>CONNIE KASARI: WOW.

574
00:21:55,640 --> 00:21:56,520
I ALWAYS GET EXCITED WHEN YOU

575
00:21:56,520 --> 00:21:59,240
TALK AND I WANT TO KEEP

576
00:21:59,240 --> 00:22:00,320
LISTENING.

577
00:22:00,320 --> 00:22:05,240
BUT, THAT WAS UNDER 7 MINUTES.

578
00:22:05,240 --> 00:22:06,160
>>DANIEL ALMIRALL NOW WE
CAN

579
00:22:06,160 --> 00:22:07,680
KEEP GOING WITH OTHER PEOPLE WHO

580
00:22:07,680 --> 00:22:09,080
MIGHT HAVE TO GO A LITTLE

581
00:22:09,080 --> 00:22:09,600
LONGER.

582
00:22:09,600 --> 00:22:11,440
>>CONNIE KASARI: YES, WE
HAVE A

583
00:22:11,440 --> 00:22:14,000
LOT OF EXCITING THINGS TODAY.

584
00:22:14,000 --> 00:22:16,200
SO NEXT WE HAVE BIRDIE GANZ WHO

585
00:22:16,200 --> 00:22:18,320
WILL TALK ABOUT RIGOROUS

586
00:22:18,320 --> 00:22:19,840
REPORTING IN SINGLE-CASE

587
00:22:19,840 --> 00:22:21,800
EXPERIMENTS ON AAC INTERVENTIONS

588
00:22:21,800 --> 00:22:23,280
FOR MINIMALLY VERBAL

589
00:22:23,280 --> 00:22:24,440
NON-SPEAKING PEOPLE WITH AUTISM.

590
00:22:24,440 --> 00:22:26,400
WE HEARD A LITTLE BIT OF A PUSH

591
00:22:26,400 --> 00:22:27,800
YESTERDAY FOR THINKING ABOUT

592
00:22:27,800 --> 00:22:29,080
THESE SINGLE CASES.

593
00:22:29,080 --> 00:22:31,480
SO I'M REALLY HAPPY YOU'RE HERE

594
00:22:31,480 --> 00:22:34,760
TO TELL US ABOUT THIS.

595
00:22:34,760 --> 00:22:36,520
>>BIRDIE GANZ: I HAVE 30

596
00:22:36,520 --> 00:22:36,720
SLIDES.

597
00:22:36,720 --> 00:22:38,520
I HAVE A STOP WATCH GOING AND

598
00:22:38,520 --> 00:22:41,720
I'LL BE LOOKING FOR THE HOOK IF

599
00:22:41,720 --> 00:22:42,360
IT'S NECESSARY.

600
00:22:42,360 --> 00:22:44,440
THANKS FOR HAVING ME.

601
00:22:44,440 --> 00:22:47,440
I'M THRILLED TO BE A PART OF

602
00:22:47,440 --> 00:22:52,080
THIS VERY PRESTIGIOUS AND GROUP

603
00:22:52,080 --> 00:22:53,920
AND ESPECIALLY THAT YOU HAVE

604
00:22:53,920 --> 00:22:56,440
INVITED SO MANY SHAREHOLDERS TO

605
00:22:56,440 --> 00:22:56,760
PARTICIPATE.

606
00:22:56,760 --> 00:22:58,760
STOW WHAT I'M GOING TO TALK

607
00:22:58,760 --> 00:23:00,680
ABOUT TODAY IS THE QUALITY AND

608
00:23:00,680 --> 00:23:02,360
EVIDENCE OF THE SINGLE-CASE

609
00:23:02,360 --> 00:23:06,000
RESEARCH BASE ON AAC

610
00:23:06,000 --> 00:23:07,160
INTERVENTIONS FOR MOSTLY FOR

611
00:23:07,160 --> 00:23:08,920
FOLKS WITH AUTISM AND

612
00:23:08,920 --> 00:23:10,680
INTELLECTUAL AND DEVELOPMENTAL

613
00:23:10,680 --> 00:23:11,920
DISABILITIES AND SOMETIMES I'LL

614
00:23:11,920 --> 00:23:14,600
NARROW IN ON JUST AUTISM.

615
00:23:14,600 --> 00:23:17,440
THIS IS FUNDED BY THE INSTITUTE

616
00:23:17,440 --> 00:23:18,400
OF EDUCATION AND SCIENCES.

617
00:23:18,400 --> 00:23:20,000
MY BACKGROUND IS IN SPECIAL

618
00:23:20,000 --> 00:23:22,200
EDUCATION SO MOST OF MY FUNDING

619
00:23:22,200 --> 00:23:24,800
COMES FROM THE DEPARTMENT OF 

620
00:23:24,800 --> 00:23:25,240
EDUCATION.

621
00:23:25,240 --> 00:23:28,800
SO SINCE I AM TALKING QUICKLY, I

622
00:23:28,800 --> 00:23:31,560
DID -- HERE IS A LINK.

623
00:23:31,560 --> 00:23:34,200
IF YOU WANT TO TAKE A CLOSER

624
00:23:34,200 --> 00:23:37,400
LOOK AT THE SLIDES OR IF I HAVE

625
00:23:37,400 --> 00:23:38,160
TO HURRY THROUGH SOME THEN YOU

626
00:23:38,160 --> 00:23:38,920
CAN GO THERE.

627
00:23:38,920 --> 00:23:40,680
OR THE QR CODE SHOULD TAKE YOU

628
00:23:40,680 --> 00:23:42,440
THERE AS WELL.

629
00:23:42,440 --> 00:23:47,200
AND I ALSO -- FOR MY OWN

630
00:23:47,200 --> 00:23:49,200
PERSONAL WELLNESS, ALL THE

631
00:23:49,200 --> 00:23:50,880
PICTURES ARE OF PLACES I REALLY

632
00:23:50,880 --> 00:23:51,200
LOVE.

633
00:23:51,200 --> 00:23:53,400
SO I MADE THE CLEAN VERSION SO

634
00:23:53,400 --> 00:23:54,360
IT WILL BE A LITTLE BIT EASIER

635
00:23:54,360 --> 00:23:55,720
TO READ IF YOU'RE HAVING

636
00:23:55,720 --> 00:23:56,960
DIFFICULTY READING.

637
00:23:56,960 --> 00:23:58,520
SO, AS OTHER PEOPLE HAVE

638
00:23:58,520 --> 00:24:00,000
MENTIONED NONE OF THIS WORK CAN

639
00:24:00,000 --> 00:24:01,600
BE DONE ALONE.

640
00:24:01,600 --> 00:24:04,640
AND THIS IS A GROUP OF, A LARGE

641
00:24:04,640 --> 00:24:06,320
GROUP OF PEOPLE WHO CONTRIBUTED

642
00:24:06,320 --> 00:24:08,280
TO THIS META-ANALYSIS AND

643
00:24:08,280 --> 00:24:10,720
SYSTEMATIC REVIEW AND I WANT TO

644
00:24:10,720 --> 00:24:11,600
ESPECIALLY THANK JAMES.

645
00:24:11,600 --> 00:24:12,840
ALL THE BEAUTIFUL FIGURES AND

646
00:24:12,840 --> 00:24:14,400
THINGS THAT I'LL SHARE -- I'M

647
00:24:14,400 --> 00:24:17,440
ALREADY TWO MINUTES IN.

648
00:24:17,440 --> 00:24:19,400
OKAY, LET'S GO.

649
00:24:19,400 --> 00:24:19,600
OKAY.

650
00:24:19,600 --> 00:24:22,320
SO THIS JUST VERY BRIEFLY IS --

651
00:24:22,320 --> 00:24:23,960
I'M NOT GOING TO TALK TOO MUCH

652
00:24:23,960 --> 00:24:25,960
ABOUT METHODOLOGY BECAUSE OF

653
00:24:25,960 --> 00:24:26,440
TIME.

654
00:24:26,440 --> 00:24:28,160
BUT THIS IS BASICALLY WHAT WE

655
00:24:28,160 --> 00:24:31,400
DID AS FAR AS NARROWING DOWN TO

656
00:24:31,400 --> 00:24:33,320
THE SINGLE CASE EXPERIMENTS THAT

657
00:24:33,320 --> 00:24:35,800
WERE INCLUDED IN THIS PROJECT.

658
00:24:35,800 --> 00:24:39,840
SO I'M GOING TALK ABOUT FOR

659
00:24:39,840 --> 00:24:41,480
WHOM -- FROM THIS LITERATURE

660
00:24:41,480 --> 00:24:43,200
WHAT IS THE SINGLE CASE

661
00:24:43,200 --> 00:24:45,480
LITERATURE BASE SAY ABOUT FOR

662
00:24:45,480 --> 00:24:48,920
WHOM AAZ EFFECTIVE AND I'LL TALK

663
00:24:48,920 --> 00:24:50,440
ABOUT WHAT DO WE NEED TO DO IN

664
00:24:50,440 --> 00:24:55,160
THE FUTURE TO MAKE IT EASIER FOR

665
00:24:55,160 --> 00:24:57,040
MEHTA ANALYSTS LIKE ME TO

666
00:24:57,040 --> 00:24:58,760
SYNTHESIZE THIS LITERATURE AND I

667
00:24:58,760 --> 00:25:00,600
SHOULD ALSO SAY THAT I AM A

668
00:25:00,600 --> 00:25:02,600
SINGLE CASE RESEARCHER SO, I

669
00:25:02,600 --> 00:25:05,400
HOPE NOBODY TAKES ANY OF THIS

670
00:25:05,400 --> 00:25:05,720
NEGATIVELY.

671
00:25:05,720 --> 00:25:10,160
I'M ALSO CRITICIZING MY OWN WORK

672
00:25:10,160 --> 00:25:10,480
AS WELL.

673
00:25:10,480 --> 00:25:14,280
SO AS SOME FOLKS TALKED ABOUT

674
00:25:14,280 --> 00:25:16,640
YESTERDAY, WE HAVE A REAL LACK

675
00:25:16,640 --> 00:25:22,320
OF DIVERSITY IN THIS RESEARCH

676
00:25:22,320 --> 00:25:23,440
BASE.

677
00:25:23,440 --> 00:25:25,960
WHEN WE LOOKED MORE CLOSELY, FOR

678
00:25:25,960 --> 00:25:28,960
THE MOST PART, THEY DID NOT

679
00:25:28,960 --> 00:25:30,680
SPECIFY WHAT THE RACE WAS OF THE

680
00:25:30,680 --> 00:25:31,560
PARTICIPANTS IN THE STUDIES.

681
00:25:31,560 --> 00:25:33,920
WHEN THEY DID, THEY WERE MOSTLY

682
00:25:33,920 --> 00:25:35,600
WHITE PARTICIPANTS.

683
00:25:35,600 --> 00:25:38,800
THEY DIDN'T SPECIFY THE

684
00:25:38,800 --> 00:25:41,920
ETHNICITY, NOT REPORTED VERY

685
00:25:41,920 --> 00:25:42,440
OFTEN.

686
00:25:42,440 --> 00:25:44,240
A VERY SMALL PROPORTION WERE

687
00:25:44,240 --> 00:25:48,480
FROM LATINX BACKGROUNDS AND THE

688
00:25:48,480 --> 00:25:50,000
STUDIES DON'T OFTEN REPORT HOME

689
00:25:50,000 --> 00:25:50,280
LANGUAGE.

690
00:25:50,280 --> 00:25:52,680
WHEN THEY DO, IT'S USUALLY

691
00:25:52,680 --> 00:25:54,400
ENGLISH OR STUDIES THAT WERE

692
00:25:54,400 --> 00:25:57,360
PUBLISHED IN ENGLISH-DOMINANT

693
00:25:57,360 --> 00:25:57,720
SETTINGS.

694
00:25:57,720 --> 00:26:00,800
SO THIS IS A REAL PROBLEM.

695
00:26:00,800 --> 00:26:04,600
THIS IS JUST ALSO A LITTLE BIT

696
00:26:04,600 --> 00:26:06,800
MORE DETAILED OVERVIEW OF WHO

697
00:26:06,800 --> 00:26:09,880
WAS INCLUDED IN THESE STUDIES

698
00:26:09,880 --> 00:26:11,000
THAT WE'RE REPORTING ON.

699
00:26:11,000 --> 00:26:13,120
MOST OF THE PARTICIPANTS HAD

700
00:26:13,120 --> 00:26:14,920
AUTISM OR AUTISM AND

701
00:26:14,920 --> 00:26:15,920
INTELLECTUAL DISABILITY.

702
00:26:15,920 --> 00:26:17,920
AS YOU CAN SEE, THE AGE RANGES

703
00:26:17,920 --> 00:26:19,800
OF THE PARTICIPANTS, IT WAS

704
00:26:19,800 --> 00:26:20,760
MOSTLY UNDER 10.

705
00:26:20,760 --> 00:26:24,560
SO WE HAD A REAL GAP IN THE

706
00:26:24,560 --> 00:26:25,800
LITERATURE PERTAINING IN THE

707
00:26:25,800 --> 00:26:27,840
SINGLE CASE LITERATURE FOR SURE,

708
00:26:27,840 --> 00:26:30,760
PERTAINING TO ADOLESCENTS AND

709
00:26:30,760 --> 00:26:34,040
ALSO TO ADULTS.

710
00:26:34,040 --> 00:26:35,520
LET ME GO AHEAD AND MOVE

711
00:26:35,520 --> 00:26:35,760
FORWARD.

712
00:26:35,760 --> 00:26:39,160
ONE THING I CAN SAY OVERALL IS

713
00:26:39,160 --> 00:26:41,600
THAT AAC INTERVENTIONS ARE

714
00:26:41,600 --> 00:26:45,160
EFFECTIVE ACROSS AGES REGARDLESS

715
00:26:45,160 --> 00:26:46,720
OF WHETHER OR NOT SOMEBODY HAD

716
00:26:46,720 --> 00:26:50,240
SYMBOLIC LANGUAGE TO BEGIN WITH.

717
00:26:50,240 --> 00:26:54,560
THESE TWO EFFECT SIZES, TO YOU

718
00:26:54,560 --> 00:26:56,440
AND LAW OF RESPONSE RATIO.

719
00:26:56,440 --> 00:27:00,040
-- TAU -- THE DOTS OF INDIVIDUAL

720
00:27:00,040 --> 00:27:03,480
SPECK SIZES SO IT SHOWS THE

721
00:27:03,480 --> 00:27:05,160
DISTRIBUTION OF THE EFFECT SIZES

722
00:27:05,160 --> 00:27:07,520
ACROSS THE STUDIES AND ACROSS

723
00:27:07,520 --> 00:27:07,720
AGES.

724
00:27:07,720 --> 00:27:10,040
YOU CAN SEE THAT THE EFFECTS

725
00:27:10,040 --> 00:27:12,080
WERE PRETTY -- THE AVERAGE

726
00:27:12,080 --> 00:27:14,000
EFFECTS WERE PRETTY STEADY

727
00:27:14,000 --> 00:27:14,600
ACROSS-THE-BOARD.

728
00:27:14,600 --> 00:27:16,560
YOU CAN ALSO SEE HOW

729
00:27:16,560 --> 00:27:21,440
HETEROGENOUS THESE DATA ARE,

730
00:27:21,440 --> 00:27:24,760
WHICH SPEAKS TO THE NEED TO VERY

731
00:27:24,760 --> 00:27:26,840
MUCH INDIVIDUALIZE AAC

732
00:27:26,840 --> 00:27:27,160
INTERVENTIONS.

733
00:27:27,160 --> 00:27:29,560
I CAN ALSO TELL YOU, OVERALL, WE

734
00:27:29,560 --> 00:27:31,440
DO NOT FIND VERY MANY

735
00:27:31,440 --> 00:27:32,080
STATISTICALLY SIGNIFICANT

736
00:27:32,080 --> 00:27:33,200
DIFFERENCES WHEN WE WERE LOOKING

737
00:27:33,200 --> 00:27:37,920
OR TRYING TO MAKE COMPARISONS

738
00:27:37,920 --> 00:27:38,920
ACROSS GROUPS.

739
00:27:38,920 --> 00:27:40,240
SO LIKE FOR EXAMPLE, WHEN WE

740
00:27:40,240 --> 00:27:42,440
WERE LOOKING AT WHAT

741
00:27:42,440 --> 00:27:44,440
COMMUNICATION MODE DID THEY USE

742
00:27:44,440 --> 00:27:44,640
PRIOR?

743
00:27:44,640 --> 00:27:46,040
DID THE PARTICIPANTS USE PRIOR

744
00:27:46,040 --> 00:27:48,080
TO INTERVENTION AND WHAT WERE

745
00:27:48,080 --> 00:27:51,400
THE EFFECTS OF THE INTERVENTION?

746
00:27:51,400 --> 00:27:53,080
WE FOUND NO SIGNIFICANT

747
00:27:53,080 --> 00:27:53,400
DIFFERENCES.

748
00:27:53,400 --> 00:27:55,640
WE CAN'T SAY LIKE ONE OF THESE

749
00:27:55,640 --> 00:27:58,080
TYPES OF COMMUNICATION IS GOING

750
00:27:58,080 --> 00:28:00,560
TO HAVE BETTER EFFECTS OVER ALL.

751
00:28:00,560 --> 00:28:03,800
THERE WERE SLIGHTLY, YOU KNOW,

752
00:28:03,800 --> 00:28:05,840
HIGHER OUTCOMES FOR PARTICIPANTS

753
00:28:05,840 --> 00:28:07,960
WHO HAD SOME SYMBOLIC LANGUAGE

754
00:28:07,960 --> 00:28:08,520
GOING IN.

755
00:28:08,520 --> 00:28:11,120
SO IF THEY USED LOW-TECH AAC OR

756
00:28:11,120 --> 00:28:14,960
THE HIGH-TECH AAC OR MANUAL SIGN

757
00:28:14,960 --> 00:28:15,200
LANGUAGE.

758
00:28:15,200 --> 00:28:17,200
IN MOST CASES THEY HAD BETTER

759
00:28:17,200 --> 00:28:19,400
EFFECTS BUT NOT STATISTICALLY

760
00:28:19,400 --> 00:28:22,120
BETTER EFFECTS THAN FOLKS WHO

761
00:28:22,120 --> 00:28:25,320
DIDN'T USE SYMBOLIC LANGUAGE AT

762
00:28:25,320 --> 00:28:26,800
THE OUTSET.

763
00:28:26,800 --> 00:28:30,880
SO, AS FAR AS IMPROVING

764
00:28:30,880 --> 00:28:32,800
REPORTING RELATED TO PARTICIPANT

765
00:28:32,800 --> 00:28:35,680
TRAITS, OBVIOUSLY WE NEED, WE

766
00:28:35,680 --> 00:28:37,760
DESPERATELY NEED MORE DIVERSE

767
00:28:37,760 --> 00:28:38,800
PARTICIPANTS TO BE IN THESE

768
00:28:38,800 --> 00:28:42,240
STUDIES AND WE NEED CULTURALLY

769
00:28:42,240 --> 00:28:45,720
AND LINGUISTIC RESPONSIVE

770
00:28:45,720 --> 00:28:46,480
APPROACHES.

771
00:28:46,480 --> 00:28:48,960
THIS IS -- WE VERY MUCH ARE NOT

772
00:28:48,960 --> 00:28:50,360
REFLECTING THE POPULATION OF THE

773
00:28:50,360 --> 00:28:52,280
U.S. OR GLOBALLY FOR THAT

774
00:28:52,280 --> 00:28:52,560
MATTER.

775
00:28:52,560 --> 00:28:54,280
WE ALSO NEED BETTER DESCRIPTIONS

776
00:28:54,280 --> 00:28:56,680
OF THE PARTICIPANTS AND THEIR

777
00:28:56,680 --> 00:28:57,400
PRIOR SKILLS.

778
00:28:57,400 --> 00:29:01,040
WE DON'T REALLY HAVE A GOOD --

779
00:29:01,040 --> 00:29:02,640
AND OF THEIR ASSESSMENTS.

780
00:29:02,640 --> 00:29:04,960
THERE IS NOT VERY MUCH

781
00:29:04,960 --> 00:29:06,080
CONSISTENCY ACROSS ASSESSMENTS,

782
00:29:06,080 --> 00:29:07,760
ACROSS THE STUDIES.

783
00:29:07,760 --> 00:29:10,080
WHICH MAKES IT VERY HARD, AGAIN

784
00:29:10,080 --> 00:29:13,600
TO, SYNTHESIZE THIS LITERATURE.

785
00:29:13,600 --> 00:29:15,080
ALSO AS PEOPLE WERE TALKING

786
00:29:15,080 --> 00:29:16,600
ABOUT YESTERDAY, A LOT, WHICH I

787
00:29:16,600 --> 00:29:18,320
REALLY APPRECIATE, WE NEED MORE

788
00:29:18,320 --> 00:29:19,600
RESEARCH THAT INVOLVES

789
00:29:19,600 --> 00:29:20,920
SHAREHOLDERS AND DECISION-MAKING

790
00:29:20,920 --> 00:29:22,560
AT ALL STAGES AND I'M THRILLED

791
00:29:22,560 --> 00:29:25,400
TO HEAR A LITTLE BIT YESTERDAY

792
00:29:25,400 --> 00:29:26,760
ABOUT SOME FOLKS WHO ARE

793
00:29:26,760 --> 00:29:29,360
STARTING TO DEVELOP GUIDANCE FOR

794
00:29:29,360 --> 00:29:30,800
RESEARCHES ON HOW TO DO THIS.

795
00:29:30,800 --> 00:29:33,240
I FEEL LIKE I'M AT A LOSS AND IT

796
00:29:33,240 --> 00:29:34,560
WOULD BE HELPFUL TO HAVE

797
00:29:34,560 --> 00:29:36,760
ORGANIZATIONS TO HELP IDENTIFY

798
00:29:36,760 --> 00:29:39,760
AUTISTIC RESEARCHERS OR

799
00:29:39,760 --> 00:29:40,360
COLLABORATORS.

800
00:29:40,360 --> 00:29:42,000
SO NOW I'M GOING TO TALK ABOUT

801
00:29:42,000 --> 00:29:45,120
UNDER WHAT INSTRUCTIONAL

802
00:29:45,120 --> 00:29:46,640
PRACTICES AND CONTEXT?

803
00:29:46,640 --> 00:29:48,880
SO INSTRUCTIONAL SET ACCIDENT,

804
00:29:48,880 --> 00:29:51,120
WHEN WE LOOKED AT WHERE THESE

805
00:29:51,120 --> 00:29:53,360
STUDIES WERE IMPLEMENTED, WE

806
00:29:53,360 --> 00:29:55,760
FOUND THAT MOSTLY THEY WERE

807
00:29:55,760 --> 00:29:58,600
IMPLEMENTED IN CLASSROOMS AND

808
00:29:58,600 --> 00:29:59,040
CLINICS.

809
00:29:59,040 --> 00:30:01,200
HOMES WERE THE LEAST-COMMON

810
00:30:01,200 --> 00:30:01,440
SETTING.

811
00:30:01,440 --> 00:30:03,640
BUT, THERE WEREN'T STATISTICALLY

812
00:30:03,640 --> 00:30:04,680
SIGNIFICANT DIFFERENCES IN

813
00:30:04,680 --> 00:30:06,240
OUTCOMES COMPARING ACROSS

814
00:30:06,240 --> 00:30:07,760
SETTINGS, WHICH TO ME IS VERY

815
00:30:07,760 --> 00:30:09,440
HOPEFUL BECAUSE THAT MEANS WE

816
00:30:09,440 --> 00:30:12,120
SHOULD AND CAN MOVE MORE TOWARDS

817
00:30:12,120 --> 00:30:13,280
MORE NATURAL SETTINGS AS WELL AS

818
00:30:13,280 --> 00:30:16,680
MULTIPLE SETTINGS TO IMPROVE

819
00:30:16,680 --> 00:30:18,160
GENERALIZATION.

820
00:30:18,160 --> 00:30:20,000
SORRY I'M HAVING TO GO SO FAST.

821
00:30:20,000 --> 00:30:23,120
TIME FLIES VERY QUICKLY.

822
00:30:23,120 --> 00:30:24,760
WE ALSO FOUND THAT STUDIES USED

823
00:30:24,760 --> 00:30:28,680
A RANGE OF TEACHING STIMULI AND

824
00:30:28,680 --> 00:30:32,360
INSTRUCTIONAL STRATEGIES BUT

825
00:30:32,360 --> 00:30:36,520
THEY WEREN'T A WHOLE LOT OF

826
00:30:36,520 --> 00:30:37,040
STATISTICALLY SIGNIFICANT

827
00:30:37,040 --> 00:30:38,040
DIFFERENCES, WITH A COUPLE OF

828
00:30:38,040 --> 00:30:40,080
EXCEPTIONS.

829
00:30:40,080 --> 00:30:43,800
MODELING ACT YIELD FOR TAU,

830
00:30:43,800 --> 00:30:45,360
MODELING ACTUALLY WHEN IT WAS

831
00:30:45,360 --> 00:30:47,840
USED, THEY WERE LOWER EFFECTS

832
00:30:47,840 --> 00:30:49,400
THAN WHEN IT WASN'T.

833
00:30:49,400 --> 00:30:50,960
NOT SURE EXACTLY WHY THIS IS AND

834
00:30:50,960 --> 00:30:54,080
IT MAY NOT WORK OUT IF -- WE MAY

835
00:30:54,080 --> 00:30:55,520
NOT SEE THE SAME EFFECTS IF WE

836
00:30:55,520 --> 00:31:00,480
HAD BROKEN IT DOWN MORE BY

837
00:31:00,480 --> 00:31:01,400
POPULATIONS.

838
00:31:01,400 --> 00:31:02,200
PHYSICAL PROMPTS WHEN THAT WERE

839
00:31:02,200 --> 00:31:03,560
USED HAD AYER EFFECTS.

840
00:31:03,560 --> 00:31:04,560
WHICH MAKES SENSE FROM THE

841
00:31:04,560 --> 00:31:09,400
STANDPOINT OF A LOT OF AAC AND

842
00:31:09,400 --> 00:31:11,800
UNAIDED AAC PARTICIPANTS WOULD

843
00:31:11,800 --> 00:31:13,160
BENEFIT FROM PHYSICAL PROMPTING

844
00:31:13,160 --> 00:31:23,440
IN EARLY STAGES.

845
00:31:25,040 --> 00:31:26,760
SO WHAT INFORMATION TWO WE NEED?

846
00:31:26,760 --> 00:31:28,040
MORE IMPLEMENTATION AND LESS

847
00:31:28,040 --> 00:31:30,760
RIGID AND MORE NATURAL CONTEXT

848
00:31:30,760 --> 00:31:31,960
WITH COMMUNICATION PARTNERS, THE

849
00:31:31,960 --> 00:31:33,360
NATURAL PARTNERS IN THE

850
00:31:33,360 --> 00:31:33,840
SETTINGS.

851
00:31:33,840 --> 00:31:34,960
IN NATURAL SETTINGS AND NOT

852
00:31:34,960 --> 00:31:38,040
PULLED ASIDE INTO A SPECIAL

853
00:31:38,040 --> 00:31:39,160
CLINIC ROOM.

854
00:31:39,160 --> 00:31:42,440
AND WITH NATURAL MATERIALS

855
00:31:42,440 --> 00:31:43,040
PRESENT IN THEIR ENVIRONMENT.

856
00:31:43,040 --> 00:31:44,680
AND FINALLY FOR WHAT TARGETED

857
00:31:44,680 --> 00:31:45,880
OUTCOMES, I'M GOING SKIP AHEAD

858
00:31:45,880 --> 00:31:49,000
TO WHAT THE GAPS ARE AND WHAT WE

859
00:31:49,000 --> 00:31:52,480
NEED TO CONCENTRATE ON.

860
00:31:52,480 --> 00:31:55,840
SO, LONG TERM, WE IN SINGLE

861
00:31:55,840 --> 00:31:57,280
CASE, WE TEND TO HAVE

862
00:31:57,280 --> 00:31:59,640
MAINTENANCE DATA WE TEND TO TAKE

863
00:31:59,640 --> 00:32:02,120
AT A FEW WEEKS AFTER THE END OF

864
00:32:02,120 --> 00:32:03,440
THE INTERVENTION BUT THAT'S NOT

865
00:32:03,440 --> 00:32:04,800
REALLY TELLING US VERY MUCH

866
00:32:04,800 --> 00:32:05,720
ABOUT LONG TERM.

867
00:32:05,720 --> 00:32:07,960
WE NEED MORE RESEARCH ON

868
00:32:07,960 --> 00:32:09,320
MULTIMODAL COMMUNICATION USING

869
00:32:09,320 --> 00:32:11,440
ALL DIFFERENT KINDS OF

870
00:32:11,440 --> 00:32:12,560
COMMUNICATION.

871
00:32:12,560 --> 00:32:14,240
THE OBJECT IS NOT TO GET

872
00:32:14,240 --> 00:32:16,560
SOMEBODY TO USE THIS AAC DEVICE.

873
00:32:16,560 --> 00:32:20,200
IT'S TO HELP THEM COMMUNICATE

874
00:32:20,200 --> 00:32:20,800
FLUENTLY AND EASILY AND GET

875
00:32:20,800 --> 00:32:22,320
THEIR NEEDS ACROSS.

876
00:32:22,320 --> 00:32:26,760
AND THEN OF COURSE MATCHING

877
00:32:26,760 --> 00:32:27,240
COMMUNICATION MODES TO

878
00:32:27,240 --> 00:32:27,560
PARTICIPANTS.

879
00:32:27,560 --> 00:32:29,280
AND I THINK I'M ABOUT OUT OF

880
00:32:29,280 --> 00:32:29,600
TIME.

881
00:32:29,600 --> 00:32:33,120
BUT ONE WORD FOR REPLICATION AND

882
00:32:33,120 --> 00:32:34,360
FOR OPEN SCIENCE.

883
00:32:34,360 --> 00:32:35,360
I WELCOME COLLABORATIONS.

884
00:32:35,360 --> 00:32:37,520
THERE IS AGAIN THE LINK TO MY

885
00:32:37,520 --> 00:32:39,960
HANDOUTS IF YOU WANT TO GET TO

886
00:32:39,960 --> 00:32:44,000
WHAT I WAS ABLE -- WASN'T ABLE

887
00:32:44,000 --> 00:32:48,120
TO GET TO.

888
00:32:48,120 --> 00:32:50,760
>>CONNIE KASARI: WITHIN
TIME,

889
00:32:50,760 --> 00:32:52,600
THANK YOU, BIRDIE THAT WAS

890
00:32:52,600 --> 00:32:52,800
GREAT.

891
00:32:52,800 --> 00:32:55,840
SO WE HAVE A VERY DIVERSE SET OF

892
00:32:55,840 --> 00:32:57,480
TALKS THIS MORNING.

893
00:32:57,480 --> 00:32:58,760
SO NOW WE'LL HAVE SOME

894
00:32:58,760 --> 00:33:00,640
COMMENTARY AND WE ARE FORTUNATE

895
00:33:00,640 --> 00:33:02,280
TO HAVE STEPHEN CAMARATA HERE

896
00:33:02,280 --> 00:33:04,440
WHO WILL START US OFF.

897
00:33:04,440 --> 00:33:07,880
>>STEPHEN CAMARATA: THANK
YOU

898
00:33:07,880 --> 00:33:08,120
VERY MUCH.

899
00:33:08,120 --> 00:33:12,320
ALL RIGHT, LET'S SEE.

900
00:33:12,320 --> 00:33:16,520
CAN EVERYBODY SEE MY SCREEN?

901
00:33:16,520 --> 00:33:19,480
THAT SLIDE IS VERY APPROPRIATE.

902
00:33:19,480 --> 00:33:21,640
SO, WHAT AN AMAZINGLY TALENTED

903
00:33:21,640 --> 00:33:22,880
GROUP OF RESEARCHERS.

904
00:33:22,880 --> 00:33:24,600
THEY WENT SO THROUGH QUICKLY.

905
00:33:24,600 --> 00:33:26,720
IT'S KIND OF UNDERESTIMATE JUST

906
00:33:26,720 --> 00:33:29,000
THE TALENT AND ALL THE EXPERTISE

907
00:33:29,000 --> 00:33:29,880
THAT WENT INTO THAT.

908
00:33:29,880 --> 00:33:31,640
A COUPLE OF HIGHLIGHTS.

909
00:33:31,640 --> 00:33:33,000
I'M NOT THE STAR OF THE SHOW

910
00:33:33,000 --> 00:33:33,200
HERE.

911
00:33:33,200 --> 00:33:36,840
I JUST WANT TO MAKE SOME HIGH

912
00:33:36,840 --> 00:33:37,640
POINTS.

913
00:33:37,640 --> 00:33:41,680
SO I'M VUUMZ PAYING ME WHICH I

914
00:33:41,680 --> 00:33:41,880
LOVE.

915
00:33:41,880 --> 00:33:43,320
NIH AND IE.

916
00:33:43,320 --> 00:33:44,480
AND DEPARTMENT OF EDUCATION

917
00:33:44,480 --> 00:33:45,800
SUPPORT MY RESEARCH.

918
00:33:45,800 --> 00:33:48,800
I ALSO GET A SMALL AMOUNT OF

919
00:33:48,800 --> 00:33:50,360
ROYALTIES FROM AN ARTICULATION

920
00:33:50,360 --> 00:33:53,840
TESTS WE DEVELOPED FROM DICK

921
00:33:53,840 --> 00:33:55,080
WOOD COCK AND I HAVE SOME BOOKS

922
00:33:55,080 --> 00:33:56,080
AND GET?

923
00:33:56,080 --> 00:33:56,560
ROYALTIES FROM THOSE.

924
00:33:56,560 --> 00:33:58,560
I WANT TO ECHO ONE THING.

925
00:33:58,560 --> 00:34:00,080
IT'S VERY FOUNDATIONAL AND IT

926
00:34:00,080 --> 00:34:01,520
HAS COME UP AGAIN AND AGAIN.

927
00:34:01,520 --> 00:34:02,720
WHO ARE WE TALKING ABOUT?

928
00:34:02,720 --> 00:34:06,640
WE PUBLISHED A DESCRIPTION OF

929
00:34:06,640 --> 00:34:08,440
NON VERBAL AND MINIMALLY VERBAL

930
00:34:08,440 --> 00:34:10,520
CHILDREN IN A PAPER LAST YEAR,

931
00:34:10,520 --> 00:34:12,440
TWO YEARS AGO AND WHAT WE FOUND

932
00:34:12,440 --> 00:34:14,360
WAS THAT THERE IS A LOT OF

933
00:34:14,360 --> 00:34:15,600
VARIATION IN WHO IS INCLUDED IN

934
00:34:15,600 --> 00:34:16,800
THESE STUDIES.

935
00:34:16,800 --> 00:34:17,520
I THINK THE FIRST THING IS, IF

936
00:34:17,520 --> 00:34:20,240
WE ARE GOING TO GET, MAKE

937
00:34:20,240 --> 00:34:21,600
PROGRESS IN RESEARCH, WE HAVE

938
00:34:21,600 --> 00:34:24,200
GOT TO HAVE GOOD DETAILED

939
00:34:24,200 --> 00:34:25,080
PHENOTYPING.

940
00:34:25,080 --> 00:34:29,560
WE HEARD THAT FROM THE PREVIOUS

941
00:34:29,560 --> 00:34:30,880
PRESENTATION WHICH WAS

942
00:34:30,880 --> 00:34:31,200
OUTSTANDING.

943
00:34:31,200 --> 00:34:32,000
I WISH I COULD GO THROUGH THE

944
00:34:32,000 --> 00:34:33,720
DATA SHE PRESENTED IN DETAIL.

945
00:34:33,720 --> 00:34:37,280
THAT WAS PHENOMENAL IT'S REALLY

946
00:34:37,280 --> 00:34:40,760
CRUCIAL AND I THINK WE WERE

947
00:34:40,760 --> 00:34:42,080
SHOWED THAT DESIGN IS REALLY

948
00:34:42,080 --> 00:34:43,720
IMPORTANT IN THAT THE ONLY WAY

949
00:34:43,720 --> 00:34:45,640
WE WILL MAKE PROGRESS IN THIS

950
00:34:45,640 --> 00:34:47,080
DISCOVERY SPACE IS IF WE USE THE

951
00:34:47,080 --> 00:34:49,920
RIGHT DESIGN AND THE RIGHT

952
00:34:49,920 --> 00:34:50,760
TOOLS.

953
00:34:50,760 --> 00:34:52,480
SO, CLEARLY ONE OF THE WONDERFUL

954
00:34:52,480 --> 00:34:56,960
THINGS THAT I LOVED ABOUT

955
00:34:56,960 --> 00:34:59,880
DR. LARRY SCAHILL'S

956
00:34:59,880 --> 00:35:02,760
PRESENTATION, WE HAVE ENOUGH

957
00:35:02,760 --> 00:35:08,000
STUDIES TO SAY THAT THIS IS THE

958
00:35:08,000 --> 00:35:09,040
WAY TO GO, COMBINATION.

959
00:35:09,040 --> 00:35:11,200
I HAVE BEEN SAYING THAT BUT NOW

960
00:35:11,200 --> 00:35:12,600
IT'S GREAT BECAUSE NOW I HAVE

961
00:35:12,600 --> 00:35:13,760
EVIDENCE AND THE STUDIES THAT

962
00:35:13,760 --> 00:35:16,480
CONTRIBUTE TO THAT.

963
00:35:16,480 --> 00:35:18,000
DR. DANIEL ALMIRALL POINTS OUT

964
00:35:18,000 --> 00:35:19,560
WHEN YOU HAVE A INDIVIDUAL, THEY

965
00:35:19,560 --> 00:35:21,960
WILL HAVE A UNIQUE SET OF NEEDS.

966
00:35:21,960 --> 00:35:22,960
THESE KIND OF DESIGNS WHERE YOU

967
00:35:22,960 --> 00:35:25,760
CAN ADAPT THE TREATMENT IN

968
00:35:25,760 --> 00:35:27,360
REALTIME IF YOU WILL, AS YOU

969
00:35:27,360 --> 00:35:28,960
LOOK AT RESPONSE TO TREATMENT,

970
00:35:28,960 --> 00:35:29,760
WILL BE VERY HELPFUL AND THAT'S

971
00:35:29,760 --> 00:35:31,080
A VERY, VERY IMPORTANT CONCEPT

972
00:35:31,080 --> 00:35:33,440
TO TAKE WITH US.

973
00:35:33,440 --> 00:35:34,960
THE DIFFERENT TOOLS HAVE

974
00:35:34,960 --> 00:35:37,920
DIFFERENT STRENGTHS AND

975
00:35:37,920 --> 00:35:38,200
WEAKNESSES.

976
00:35:38,200 --> 00:35:40,480
WE SHOULDN'T BE ARGUING ABOUT X

977
00:35:40,480 --> 00:35:42,440
DESIGN OR Y DESIGN IS BETTER

978
00:35:42,440 --> 00:35:42,640
OVERALL.

979
00:35:42,640 --> 00:35:45,080
WHAT IT SHOULD BE IS, THESE ARE

980
00:35:45,080 --> 00:35:47,160
TOOLS AND WHAT WE SAW IN THIS

981
00:35:47,160 --> 00:35:48,840
PRESENTATION IS 3 VERY DIFFERENT

982
00:35:48,840 --> 00:35:50,760
IDEAS THAT ARE ALL FOLK YOU

983
00:35:50,760 --> 00:35:52,280
USING TOGETHER ON A PARTICULAR

984
00:35:52,280 --> 00:35:52,640
QUESTION.

985
00:35:52,640 --> 00:35:55,520
-- FOCUSING -- THAT IS HELPING

986
00:35:55,520 --> 00:35:58,640
PEOPLE WHO ARE NON VERBAL AND

987
00:35:58,640 --> 00:36:00,120
MINIMALLY VERBAL PEOPLE WITH

988
00:36:00,120 --> 00:36:01,200
AUTISM TO COMMUNICATE.

989
00:36:01,200 --> 00:36:02,760
ALL THESE THINGS NEED TO BE IN

990
00:36:02,760 --> 00:36:03,560
OUR TOOLKIT.

991
00:36:03,560 --> 00:36:04,920
I DO WANT TO HIGHLIGHT SOMETHING

992
00:36:04,920 --> 00:36:06,760
THAT CAME UP YESTERDAY AND I

993
00:36:06,760 --> 00:36:09,400
ADDED THIS SLIDE AS PEOPLE WERE

994
00:36:09,400 --> 00:36:09,600
TALKING.

995
00:36:09,600 --> 00:36:11,800
IN OUR REVIEW, WE FOUND THAT

996
00:36:11,800 --> 00:36:15,600
PEOPLE THAT ARE LIKE USING

997
00:36:15,600 --> 00:36:16,720
AFRAID SPEECH OR LARGER

998
00:36:16,720 --> 00:36:17,280
COMMUNICATIONS ARE INCLUDED

999
00:36:17,280 --> 00:36:19,040
SOMETIMES UNDER THE DESCRIPTIONS

1000
00:36:19,040 --> 00:36:20,080
OF MINIMALLY VERBAL.

1001
00:36:20,080 --> 00:36:23,440
SO WE REALLY NEED TO BE FOCUSING

1002
00:36:23,440 --> 00:36:25,080
ON THE MINIMALLY VERBAL PEOPLE

1003
00:36:25,080 --> 00:36:27,120
IN A BIG WAY.

1004
00:36:27,120 --> 00:36:30,320
NOT TO SHORT CHANGE THE OTHER

1005
00:36:30,320 --> 00:36:32,000
COMMUNICATION NEEDS OF PEOPLE ON

1006
00:36:32,000 --> 00:36:33,160
THE SPECTRUM.

1007
00:36:33,160 --> 00:36:34,320
WE WANT TO SERVE EVERYBODY.

1008
00:36:34,320 --> 00:36:36,640
BUT IT'S REALLY CRUCIAL THAT WE

1009
00:36:36,640 --> 00:36:38,640
FOCUS ON MINIMALLY VERBAL PEOPLE

1010
00:36:38,640 --> 00:36:41,960
AS WE GO FORWARD BECAUSE THESE

1011
00:36:41,960 --> 00:36:45,600
ARE THE PEOPLE THAT HAVE THE

1012
00:36:45,600 --> 00:36:46,200
MOST -- HIGHSEST COMMUNICATION

1013
00:36:46,200 --> 00:36:48,840
NEEDS, SUPPORT NEEDS AND SO ON.

1014
00:36:48,840 --> 00:36:52,080
WE KNOW FROM BEHAVIOR ANALYSIS

1015
00:36:52,080 --> 00:36:55,680
THAT LARRY SHOWED FOR CROSS

1016
00:36:55,680 --> 00:36:56,520
POLLENNIZATION, COMMUNICATION IS

1017
00:36:56,520 --> 00:36:58,000
SUCH A CENTRAL PART AND IF THERE

1018
00:36:58,000 --> 00:36:59,440
IS ONE THING THAT PARENTS WOULD

1019
00:36:59,440 --> 00:37:02,520
SAY TO ME, IF I COULD GET MY

1020
00:37:02,520 --> 00:37:03,800
AUTISTIC CHILD TO COMMUNICATE,

1021
00:37:03,800 --> 00:37:04,720
THAT WOULD BE THE ONE THING I

1022
00:37:04,720 --> 00:37:05,320
COULD DO.

1023
00:37:05,320 --> 00:37:07,480
SO WE REALLY WANT TO FOCUS ON

1024
00:37:07,480 --> 00:37:07,680
THIS.

1025
00:37:07,680 --> 00:37:10,720
THESE ARE NOT PEOPLE USING

1026
00:37:10,720 --> 00:37:11,120
AFRAID SPEECH.

1027
00:37:11,120 --> 00:37:14,000
AND IT WON'T BE APPLICABLE AND

1028
00:37:14,000 --> 00:37:15,080
THAT'S ANOTHER IMPORTANT THING.

1029
00:37:15,080 --> 00:37:16,400
AS WE LEARNED YESTERDAY AND WE

1030
00:37:16,400 --> 00:37:18,480
HEARD FROM A LOT OF OUR

1031
00:37:18,480 --> 00:37:19,600
STAKEHOLDERS, IT'S IMPORTANT WE

1032
00:37:19,600 --> 00:37:22,480
INCLUDE QUALITATIVE DESIGNS.

1033
00:37:22,480 --> 00:37:24,480
WE NEED TO HAVE AS PART OF THE

1034
00:37:24,480 --> 00:37:26,480
FEED BACK LOOP WE DO AS

1035
00:37:26,480 --> 00:37:27,240
RESEARCHERS.

1036
00:37:27,240 --> 00:37:30,680
QUALITATIVE DESIGNS ARE THE MOST

1037
00:37:30,680 --> 00:37:32,120
VULNERABLE TO BIAS SO WE HAVE TO

1038
00:37:32,120 --> 00:37:33,080
BE CAREFUL.

1039
00:37:33,080 --> 00:37:34,920
THE ON THE OTHER HAND THEY ARE

1040
00:37:34,920 --> 00:37:35,200
EXCELLENT.

1041
00:37:35,200 --> 00:37:36,720
AND I CAN POINT TO YOU MANY,

1042
00:37:36,720 --> 00:37:38,200
MANY QUALITATIVE DESIGNS THAT

1043
00:37:38,200 --> 00:37:39,920
LAID THE GROUNDWORK FOR FUTURE

1044
00:37:39,920 --> 00:37:41,720
STUDIES THAT REALLY VALIDATED

1045
00:37:41,720 --> 00:37:43,520
THE ORIGINAL RUBRICS.

1046
00:37:43,520 --> 00:37:46,320
SO WE DEFINITELY NEED TO BE

1047
00:37:46,320 --> 00:37:47,000
THOUGHTFUL AND MOVAL ABOUT

1048
00:37:47,000 --> 00:37:48,240
INCLUDING THESE AND THAT'S ALL

1049
00:37:48,240 --> 00:37:50,480
PART OF THE STAKEHOLDER

1050
00:37:50,480 --> 00:37:51,400
DISCUSSION AS WELL.

1051
00:37:51,400 --> 00:37:53,000
IT'S IMPORTANT WE THINK ABOUT,

1052
00:37:53,000 --> 00:37:54,840
AND YOUR POINT IN BROADER

1053
00:37:54,840 --> 00:37:55,200
OUTCOMES.

1054
00:37:55,200 --> 00:37:56,960
I THOUGHT IT WAS REALLY

1055
00:37:56,960 --> 00:37:58,240
INTERESTING TO HEAR THAT OKAY,

1056
00:37:58,240 --> 00:38:01,480
IF WE JUST PROVIDE A DRUG OR

1057
00:38:01,480 --> 00:38:03,320
PROVIDE OXYTOCIN OR WHATEVER IT

1058
00:38:03,320 --> 00:38:05,800
IS, THAT DOESN'T NECESSARILY

1059
00:38:05,800 --> 00:38:06,600
CHANGE THE BEHAVIOR.

1060
00:38:06,600 --> 00:38:09,240
ONE OF MY STUDENTS CALLED AN

1061
00:38:09,240 --> 00:38:11,400
ANCIENT NATURAL 1991, JOHN AND I

1062
00:38:11,400 --> 00:38:12,760
PUBLISHED A STUDY SHOWING THAT

1063
00:38:12,760 --> 00:38:14,240
IF YOU TEACH AUGMENTIVE

1064
00:38:14,240 --> 00:38:15,640
COMMUNICATION, JUST USE THE

1065
00:38:15,640 --> 00:38:17,560
DEVICE, IT DOESN'T GENERALIZE.

1066
00:38:17,560 --> 00:38:19,520
AND THEN IF YOU WANT TO USE --

1067
00:38:19,520 --> 00:38:20,760
PEOPLE USE IN A SOCIAL WAY, YOU

1068
00:38:20,760 --> 00:38:22,800
HAVE TO TARGET SOCIALIZATION.

1069
00:38:22,800 --> 00:38:25,080
SO I'M REALLY HAPPY TO HEAR THAT

1070
00:38:25,080 --> 00:38:27,040
THAT'S NOT ONLY TRUE FOR

1071
00:38:27,040 --> 00:38:28,040
AUGMENTIVE BUT FOR EVERYTHING.

1072
00:38:28,040 --> 00:38:33,080
SO WE DO SOMETIMES HAVE TO BUILD

1073
00:38:33,080 --> 00:38:34,280
ATTITUDE FOR SPEECH PRODUCTION

1074
00:38:34,280 --> 00:38:36,280
LIKE ARTICULATION OR HOW TO

1075
00:38:36,280 --> 00:38:37,320
ACTIVATE AND SCAN A DEVICE.

1076
00:38:37,320 --> 00:38:39,040
WE HEARD THAT FROM JANICE

1077
00:38:39,040 --> 00:38:39,480
YESTERDAY.

1078
00:38:39,480 --> 00:38:40,560
I HEARD THAT SHE WAS THINKING

1079
00:38:40,560 --> 00:38:42,760
ABOUT HOW CAN WE REALLY GET THIS

1080
00:38:42,760 --> 00:38:43,360
TO GENERALIZE.

1081
00:38:43,360 --> 00:38:45,520
SO WE REALLY WANT TO THINK ABOUT

1082
00:38:45,520 --> 00:38:47,120
OUR SHORT TERM NEAR POINT AND

1083
00:38:47,120 --> 00:38:54,160
HOW THOSE FEED INTO THE BROADER

1084
00:38:54,160 --> 00:38:54,520
OUTCOMES.

1085
00:38:54,520 --> 00:38:55,720
RECENT PAPER SAID THAT IT'S

1086
00:38:55,720 --> 00:38:57,200
REALLY IMPORTANT WE ALIGN OUR

1087
00:38:57,200 --> 00:38:58,760
SHORT-TERM GOALS WITH LONG-TERM

1088
00:38:58,760 --> 00:39:00,720
GOALS BECAUSE THE OUTCOMES

1089
00:39:00,720 --> 00:39:02,440
AREN'T AS GOOD AS WE'D LIKE

1090
00:39:02,440 --> 00:39:04,160
BECAUSE PEOPLE ARE GOING

1091
00:39:04,160 --> 00:39:05,040
DAY-TO-DAY, MONTH-TO-MONTH,

1092
00:39:05,040 --> 00:39:06,640
TRYING TO ALIGN WITH SHORT TERM

1093
00:39:06,640 --> 00:39:08,680
THINGS BUT NOT ALIGNING THEM

1094
00:39:08,680 --> 00:39:09,560
WITH WIDER GOALS.

1095
00:39:09,560 --> 00:39:10,760
THE LAST THING I WANT TO LEAVE

1096
00:39:10,760 --> 00:39:12,680
YOU WITH IS, WE HAVE TO REALLY

1097
00:39:12,680 --> 00:39:13,840
THINK ABOUT ETHICAL RESEARCH AND

1098
00:39:13,840 --> 00:39:16,480
WE HEARD ABOUT THE LACK OF

1099
00:39:16,480 --> 00:39:17,720
DIVERSE PERSPECTIVES AND

1100
00:39:17,720 --> 00:39:18,280
INCLUSION.

1101
00:39:18,280 --> 00:39:20,760
CLEARLY DIFFERENT POPULATIONS,

1102
00:39:20,760 --> 00:39:23,080
HOW DO THEY REACT TO DIFFERENT

1103
00:39:23,080 --> 00:39:24,880
KINDS OF PEOPLE AND DIFFERENT

1104
00:39:24,880 --> 00:39:26,000
KINDS OF INTERVENTION?

1105
00:39:26,000 --> 00:39:28,000
WHAT IS THE ROLE OF PARENTS AND

1106
00:39:28,000 --> 00:39:29,240
THESE THINGS NEED TO BE STUDIED

1107
00:39:29,240 --> 00:39:30,120
AND INCLUDED.

1108
00:39:30,120 --> 00:39:32,160
THE OTHER THING THAT REALLY

1109
00:39:32,160 --> 00:39:34,040
CAUGHT MY -- REALLY IMPORTANT TO

1110
00:39:34,040 --> 00:39:35,360
ME IS THE NARRATIVE FROM OUR

1111
00:39:35,360 --> 00:39:37,760
FIRST SPEAKER WHO IS AN AAC USER

1112
00:39:37,760 --> 00:39:39,520
AND MENTIONED TRAUMA FROM THE

1113
00:39:39,520 --> 00:39:40,040
TREATMENT.

1114
00:39:40,040 --> 00:39:41,320
WE PUBLISHED A SERIES OF STUDIES

1115
00:39:41,320 --> 00:39:44,200
GOING BACK 25 YEARS SHOWING THAT

1116
00:39:44,200 --> 00:39:46,480
DIRECT PROMPTING AND STRONG

1117
00:39:46,480 --> 00:39:48,200
PROMPTING OR FORCED PROMPTING

1118
00:39:48,200 --> 00:39:49,200
MAY NOT NECESSARILY -- THAT IS

1119
00:39:49,200 --> 00:39:50,360
SOMETHING WE NEED TO THINK

1120
00:39:50,360 --> 00:39:50,720
ABOUT.

1121
00:39:50,720 --> 00:39:52,280
THERE MAY BE TIMES WHEN IT IS

1122
00:39:52,280 --> 00:39:55,440
NEEDED BUT THERE ARE TIMES WE

1123
00:39:55,440 --> 00:39:56,040
WANTED TO USE THAT JUDICIOUSLY

1124
00:39:56,040 --> 00:39:56,640
AND IT'S IMPORTANT TO THINK

1125
00:39:56,640 --> 00:39:57,360
ABOUT THAT.

1126
00:39:57,360 --> 00:39:58,400
THIS IS THE FIRST SLIDE THAT

1127
00:39:58,400 --> 00:39:58,640
CAME UP.

1128
00:39:58,640 --> 00:40:00,280
WE ARE ALL ON THE SAME TEAM.

1129
00:40:00,280 --> 00:40:01,480
I WORRY THAT RIGHT NOW THERE IS

1130
00:40:01,480 --> 00:40:04,800
A LOT OF CONVERSATIONS ABOUT WHO

1131
00:40:04,800 --> 00:40:06,120
SPEAKS FOR PEOPLE AND WHAT

1132
00:40:06,120 --> 00:40:07,320
STAKEHOLDERS ARE.

1133
00:40:07,320 --> 00:40:09,000
WE HAVE TO RESPECT AUTONOMY AND

1134
00:40:09,000 --> 00:40:10,120
ACCEPTANCE BUT THERE IS ALSO A

1135
00:40:10,120 --> 00:40:11,200
RIGHT TO COMMUNICATION AND WE

1136
00:40:11,200 --> 00:40:13,360
HAVE TO HAVE AN ONGOING DIALOGUE

1137
00:40:13,360 --> 00:40:16,280
BECAUSE I REALLY WORRY THAT WE

1138
00:40:16,280 --> 00:40:17,080
ARE GOING TO BECOME

1139
00:40:17,080 --> 00:40:17,960
FRACTIONATED.

1140
00:40:17,960 --> 00:40:19,360
HONESTLY, I THINK ALL OF US

1141
00:40:19,360 --> 00:40:20,720
HERE, AND THE DEDICATION AND

1142
00:40:20,720 --> 00:40:23,400
JUST ALL THE THINGS I HAVE HEARD

1143
00:40:23,400 --> 00:40:26,200
FROM EVERYBODY, WE ALL WANT TO

1144
00:40:26,200 --> 00:40:27,640
BE RESPECTFUL AND WE ARE ALL

1145
00:40:27,640 --> 00:40:29,760
WORKING TOGETHER AND HAVE

1146
00:40:29,760 --> 00:40:30,240
DIFFERENT PERSPECTIVES.

1147
00:40:30,240 --> 00:40:31,520
WE WANT FEEDBACK TO DO BETTER

1148
00:40:31,520 --> 00:40:33,560
BUT I DON'T WANT THIS TO

1149
00:40:33,560 --> 00:40:34,080
FRACTIONATE.

1150
00:40:34,080 --> 00:40:35,440
I REALLY WORRY ABOUT THAT THAT

1151
00:40:35,440 --> 00:40:36,120
THE POINT.

1152
00:40:36,120 --> 00:40:37,640
FINALLY, I WANT TO THROW OUT A

1153
00:40:37,640 --> 00:40:38,840
COUPLE OF DESIGN THINGS FOR THE

1154
00:40:38,840 --> 00:40:39,080
FUTURE.

1155
00:40:39,080 --> 00:40:40,720
IF YOU'RE A CANCER PATIENT HERE

1156
00:40:40,720 --> 00:40:43,640
AT VANDERBILT, YOU'RE PUT INTO A

1157
00:40:43,640 --> 00:40:44,520
NATIONAL DATABASE.

1158
00:40:44,520 --> 00:40:46,480
AND I THINK THE ONLY WAY FORWARD

1159
00:40:46,480 --> 00:40:49,120
NOW WE HAVE BIG DATA -- AND I'M

1160
00:40:49,120 --> 00:40:51,040
SORRY, I MEAN I'M NOT BENEFITING

1161
00:40:51,040 --> 00:40:54,560
AT ALL BUT I REALLY THINK THAT

1162
00:40:54,560 --> 00:40:58,200
THIS HAS TO BE ACROSS INSTITUTE

1163
00:40:58,200 --> 00:41:00,040
INITIATIVE WHERE ALL MINIMALLY

1164
00:41:00,040 --> 00:41:01,760
VERBAL PEOPLE ARE ENROLLED IN A

1165
00:41:01,760 --> 00:41:03,240
NATIONAL DATABASE AND WE ARE

1166
00:41:03,240 --> 00:41:03,760
COLLECTING INFORMATION AND

1167
00:41:03,760 --> 00:41:05,400
MOVING FORWARD.

1168
00:41:05,400 --> 00:41:13,440
I RESONATED TO JOHN ROBINSON'S

1169
00:41:13,440 --> 00:41:13,920
TECHNOLOGY.

1170
00:41:13,920 --> 00:41:16,640
I LOVED TO SEE COUPING WITH

1171
00:41:16,640 --> 00:41:18,240
BRAIN WAVES.

1172
00:41:18,240 --> 00:41:20,000
THERE IS A TREATMENT PRAGMATIC

1173
00:41:20,000 --> 00:41:21,480
CLINICAL TRIALS WHERE THEY

1174
00:41:21,480 --> 00:41:23,280
CAPTURE PARTIAL DATA.

1175
00:41:23,280 --> 00:41:24,280
IT'S NOT STRONG EVIDENCE BASE

1176
00:41:24,280 --> 00:41:26,320
BUT IT IS DATA NONETHELESS AND

1177
00:41:26,320 --> 00:41:29,240
IF YOU ANALYZE IT PROPERLY.

1178
00:41:29,240 --> 00:41:29,880
YOU'RE COLLECTING DATA FROM ALL

1179
00:41:29,880 --> 00:41:32,000
THE PATIENTS IN THE CLINIC AND

1180
00:41:32,000 --> 00:41:33,920
YOU'RE HARNESSING THAT AND USING

1181
00:41:33,920 --> 00:41:35,080
BIG DATA.

1182
00:41:35,080 --> 00:41:36,960
AND THEN I THINK IT'S REALLY

1183
00:41:36,960 --> 00:41:37,560
IMPORTANT.

1184
00:41:37,560 --> 00:41:38,560
ALL OF US ARE WORKING TOGETHER

1185
00:41:38,560 --> 00:41:40,600
BUT NOT REALLY IN A PLANNED WAY.

1186
00:41:40,600 --> 00:41:42,760
AND I JUST SEE THIS NEED.

1187
00:41:42,760 --> 00:41:46,080
I MEAN, CLEARLY HELEN AND CONNIE

1188
00:41:46,080 --> 00:41:47,200
HAVE BEEN AT THE FOREFRONT OF

1189
00:41:47,200 --> 00:41:47,400
THIS.

1190
00:41:47,400 --> 00:41:49,720
BUT WE NEED TO HAVE STRATEGIC

1191
00:41:49,720 --> 00:41:50,000
PLANNING.

1192
00:41:50,000 --> 00:41:51,880
I'M NOT A TOP-DOWN KIND OF

1193
00:41:51,880 --> 00:41:52,760
PERSON IN ANY WAY.

1194
00:41:52,760 --> 00:41:54,360
BUT I REALLY THINK WE NEED TO

1195
00:41:54,360 --> 00:41:57,280
ALIGN OUR GOALS AND HAVE

1196
00:41:57,280 --> 00:41:58,080
PRIORITIES AND IN ORDER FOR US

1197
00:41:58,080 --> 00:42:00,280
TO MAKE PROGRESS, I THINK WE

1198
00:42:00,280 --> 00:42:02,720
HAVE TO BE MORE MINDFUL AND

1199
00:42:02,720 --> 00:42:03,160
SYSTEMATIC ABOUT IT.

1200
00:42:03,160 --> 00:42:04,720
THANK YOU VERY MUCH FOR YOUR

1201
00:42:04,720 --> 00:42:04,960
ATTENTION.

1202
00:42:04,960 --> 00:42:06,600
>>CONNIE KASARI: GRATED.

1203
00:42:06,600 --> 00:42:07,880
UNDER TIME AS WELL AND WHAT A

1204
00:42:07,880 --> 00:42:09,240
GREAT COMMENT.

1205
00:42:09,240 --> 00:42:11,080
WE ARE ALL ON THE SAME TEAM.

1206
00:42:11,080 --> 00:42:12,880
>>STEPHEN CAMARATA: WE
DON'T

1207
00:42:12,880 --> 00:42:14,200
WANT TO FORGET IT.

1208
00:42:14,200 --> 00:42:17,640
I HAVE SEEN FIELDS FRACTIONATE

1209
00:42:17,640 --> 00:42:18,840
AND IT STOPS PROGRESS.

1210
00:42:18,840 --> 00:42:20,000
AND WE HAVE TO.

1211
00:42:20,000 --> 00:42:21,400
WE ALL CARE SO DEEPLY HERE.

1212
00:42:21,400 --> 00:42:22,360
IT'S CLEAR.

1213
00:42:22,360 --> 00:42:25,360
>>CONNIE KASARI:
ABSOLUTELY.

1214
00:42:25,360 --> 00:42:26,320
THANK YOU.

1215
00:42:26,320 --> 00:42:30,080
NOW WE ARE GOING TO HAVE

1216
00:42:30,080 --> 00:42:31,480
COMMENTARY BY ALEUTSULOUS, A

1217
00:42:31,480 --> 00:42:35,160
PARENT AND A SOCIAL SCIENTIST --

1218
00:42:35,160 --> 00:42:35,640
A ELUDES ELUDES.

1219
00:42:35,640 --> 00:42:35,920
WELCOME.

1220
00:42:35,920 --> 00:42:38,120
WE ARE LOOKING FORWARD TO YOUR

1221
00:42:38,120 --> 00:42:40,080
COMMENTS -- AMY LUTZ.

1222
00:42:40,080 --> 00:42:41,920
DO YOU WANT TO STOP SHARING

1223
00:42:41,920 --> 00:42:42,400
SCREEN, STEPHEN.

1224
00:42:42,400 --> 00:42:44,720
>>I'M TRYING TO FIND MY
ZOOM.

1225
00:42:44,720 --> 00:42:46,600
IT'S IN A CORNER AS USUAL.

1226
00:42:46,600 --> 00:42:49,000
I'M GOING TO BAILOUT AND THEN

1227
00:42:49,000 --> 00:42:49,760
COME BACK.

1228
00:42:49,760 --> 00:42:52,920
>>JUDITH COOPER: CAN I
ASK THAT

1229
00:42:52,920 --> 00:42:55,480
DANIELLE AND BIRDIE STOP SHARING

1230
00:42:55,480 --> 00:43:01,960
UNTIL WE GET TO THE DISCUSSION

1231
00:43:01,960 --> 00:43:05,360
PERIOD.

1232
00:43:05,360 --> 00:43:15,520
THANKS.

1233
00:43:16,200 --> 00:43:17,800
HE LEFT AND LEFT HIS SLIDES UP.

1234
00:43:17,800 --> 00:43:18,520
THANK YOU.

1235
00:43:18,520 --> 00:43:20,920
>>I CLOSED IT.

1236
00:43:20,920 --> 00:43:21,360
>>GOT IT.

1237
00:43:21,360 --> 00:43:23,400
HI, AMY.

1238
00:43:23,400 --> 00:43:26,000
>>AMY LUTZ: THANK YOU FOR

1239
00:43:26,000 --> 00:43:28,120
INVITING ME TO PARTICIPATE.

1240
00:43:28,120 --> 00:43:30,560
I HEARD JOHN MENTION MEETING ME

1241
00:43:30,560 --> 00:43:34,120
AND MY 24-YEAR-OLDY AUTISTIC

1242
00:43:34,120 --> 00:43:34,600
SON, JONAH.

1243
00:43:34,600 --> 00:43:36,320
AND I DON'T KNOW IF JOHN IS HERE

1244
00:43:36,320 --> 00:43:38,600
TODAY BUT I JUST WAS VERY

1245
00:43:38,600 --> 00:43:40,360
TOUCHED THAT MEETING THAT SO

1246
00:43:40,360 --> 00:43:40,920
IMPACTFUL TO HIM.

1247
00:43:40,920 --> 00:43:42,600
IT WAS VERY IMPACTFUL TO US.

1248
00:43:42,600 --> 00:43:45,400
AND I THINK HIS CONCLUSION THAT

1249
00:43:45,400 --> 00:43:47,520
JUST BECAUSE JOHN SHARES A

1250
00:43:47,520 --> 00:43:48,960
DIAGNOSIS WITH MY SON JONAH,

1251
00:43:48,960 --> 00:43:51,760
DOESN'T MEAN THAT HE HAS ANY

1252
00:43:51,760 --> 00:43:53,040
PARTICULAR INSIGHT INTO WHAT

1253
00:43:53,040 --> 00:43:55,200
JONAH NEEDS, IS REALLY APT AND

1254
00:43:55,200 --> 00:43:58,520
NEEDS TO BE FOREFRONT OF THESE

1255
00:43:58,520 --> 00:43:59,600
CONVERSATIONS.

1256
00:43:59,600 --> 00:44:00,800
SO I DON'T HAVE ANY SLIDES AND

1257
00:44:00,800 --> 00:44:02,720
I'M SORRY, I MISSED MOST OF THE

1258
00:44:02,720 --> 00:44:02,920
TALK.

1259
00:44:02,920 --> 00:44:05,320
I HAD TO KIND OF LEAVE VERY

1260
00:44:05,320 --> 00:44:07,520
SHORTLY AFTER JOHN'S TALK

1261
00:44:07,520 --> 00:44:12,280
YESTERDAY BECAUSE I TEACH.

1262
00:44:12,280 --> 00:44:13,520
AND PEN SCHEDULED ONE OF MY

1263
00:44:13,520 --> 00:44:15,240
CLASSES DURING THIS MEETING SO I

1264
00:44:15,240 --> 00:44:16,720
COULDN'T ABANDON MY STUDENTS.

1265
00:44:16,720 --> 00:44:21,720
SO I APOLOGIZE IF WHAT I SAY IS

1266
00:44:21,720 --> 00:44:23,560
NOT CONNECTED TO WHAT HAPPENED

1267
00:44:23,560 --> 00:44:24,560
YESTERDAY OR PERHAPS ONE OF

1268
00:44:24,560 --> 00:44:26,000
THESE ISSUES WAS ADDRESSED

1269
00:44:26,000 --> 00:44:28,200
YESTERDAY AND PLEASE CORRECT ME

1270
00:44:28,200 --> 00:44:30,640
DURING THE Q&A.

1271
00:44:30,640 --> 00:44:34,080
TO ME, THERE IS TWO MAIN ISSUES

1272
00:44:34,080 --> 00:44:35,760
FOR, THAT IS IMPORTANT TO ME AS

1273
00:44:35,760 --> 00:44:38,480
THE MOTHER OF A SERIOUSLY

1274
00:44:38,480 --> 00:44:42,600
AUTISTIC ADULT NOW BUT ALSO I'M

1275
00:44:42,600 --> 00:44:43,120
VICE PRESIDENT OF NATIONAL

1276
00:44:43,120 --> 00:44:43,680
COUNCIL ON SEVERE AUTISM.

1277
00:44:43,680 --> 00:44:45,480
SO WE WORK WITH SO MANY FAMILIES

1278
00:44:45,480 --> 00:44:47,320
WHO HAVE SERIOUSLY AUTISTIC

1279
00:44:47,320 --> 00:44:50,400
CHILDREN AT ALL AGES FROM PRETTY

1280
00:44:50,400 --> 00:44:52,120
YOUNG BUT NOT SUPER YOUNG

1281
00:44:52,120 --> 00:44:54,160
BECAUSE USUALLY CHILDREN DON'T

1282
00:44:54,160 --> 00:44:55,640
REALLY OR PARENTS DON'T CONSIDER

1283
00:44:55,640 --> 00:44:56,280
THEIR CHILDREN TO BE QUITE

1284
00:44:56,280 --> 00:44:58,000
SEVERE UNTIL THEY ARE A LITTLE

1285
00:44:58,000 --> 00:45:00,400
BIT OLDER AND THEIR TRAJECTORIES

1286
00:45:00,400 --> 00:45:01,360
BECOME MORE FIXED.

1287
00:45:01,360 --> 00:45:04,080
BUT FROM WHAT WE ARE HEARING

1288
00:45:04,080 --> 00:45:06,680
FROM OUR FAMILIES AND ALSO --

1289
00:45:06,680 --> 00:45:08,080
THIS IS JUST ALSO MY PERFORM

1290
00:45:08,080 --> 00:45:10,120
PERSPECTIVE AND MY REACTION TO

1291
00:45:10,120 --> 00:45:11,520
LISTENING TO THESE CONVERSATIONS

1292
00:45:11,520 --> 00:45:13,560
ABOUT MINIMALLY VERBAL, IS I'M

1293
00:45:13,560 --> 00:45:16,640
GOING TO STEAL A PHRASE ABOUT

1294
00:45:16,640 --> 00:45:18,880
THE NEED FOR GOOD PHENOTYPING

1295
00:45:18,880 --> 00:45:20,480
AND ABOUT TALKING ABOUT

1296
00:45:20,480 --> 00:45:22,560
DIFFERENT POPULATIONS IN

1297
00:45:22,560 --> 00:45:23,040
SPECIFIC WAYS.

1298
00:45:23,040 --> 00:45:26,080
SO I'M HEARING A LOT ABOUT

1299
00:45:26,080 --> 00:45:27,120
LANGUAGE DEFICITS, MINIMALLY

1300
00:45:27,120 --> 00:45:28,240
VERBAL INDIVIDUALS.

1301
00:45:28,240 --> 00:45:29,800
I HAVEN'T HEARD ANYONE REALLY

1302
00:45:29,800 --> 00:45:31,480
SAY ANYTHING ABOUT THE

1303
00:45:31,480 --> 00:45:33,600
SIGNIFICANT COGNITIVE

1304
00:45:33,600 --> 00:45:37,400
IMPAIRMENTS THAT ARE OFTEN

1305
00:45:37,400 --> 00:45:38,880
ACCOMPANYING OR PRESENT IN

1306
00:45:38,880 --> 00:45:40,640
INDIVIDUALS THAT HAVE AUTISM AND

1307
00:45:40,640 --> 00:45:42,800
MINIMALLY VERBAL AND THAT

1308
00:45:42,800 --> 00:45:44,640
COMPLICATES THE TYPE OF LANGUAGE

1309
00:45:44,640 --> 00:45:47,160
THAT WE WANT TO HOPE FOR THESE

1310
00:45:47,160 --> 00:45:49,400
AND HELP THESE INDIVIDUALS

1311
00:45:49,400 --> 00:45:49,800
ATTAIN.

1312
00:45:49,800 --> 00:45:53,440
SO, I MEAN MY SON HAS A LOT OF

1313
00:45:53,440 --> 00:45:54,400
DIFFERENT LANGUAGE MODALITIES.

1314
00:45:54,400 --> 00:45:56,120
HE HAS A SIGNIFICANT

1315
00:45:56,120 --> 00:45:57,720
INTELLECTUAL DISABILITY BUT HE

1316
00:45:57,720 --> 00:46:00,880
ALSO HAS SOME WORDS AND HE WAS

1317
00:46:00,880 --> 00:46:02,120
HYPERLEXIC SO HE CAN SPELL AND

1318
00:46:02,120 --> 00:46:02,720
HE CAN TYPE.

1319
00:46:02,720 --> 00:46:04,680
BUT IN A VERY FUNDAMENTAL WAY.

1320
00:46:04,680 --> 00:46:07,600
AND THE KIND OF THINGS HE USES

1321
00:46:07,600 --> 00:46:09,800
HIS LANGUAGE FOR, FOR ASKING FOR

1322
00:46:09,800 --> 00:46:10,840
THINGS, PRIMARILY.

1323
00:46:10,840 --> 00:46:12,680
I MEAN THAT WAS HUGELY IMPORTANT

1324
00:46:12,680 --> 00:46:15,360
FOR HIM TO LEARN PHRASES THAT --

1325
00:46:15,360 --> 00:46:17,040
LIKE I NEED HELP.

1326
00:46:17,040 --> 00:46:19,160
OR FIX THIS.

1327
00:46:19,160 --> 00:46:20,680
AND I DON'T THINK HE NECESSARILY

1328
00:46:20,680 --> 00:46:21,880
UNDERSTANDS WHAT EVERY WORD

1329
00:46:21,880 --> 00:46:23,800
MEANS IN THESE PHRASES BUT HE

1330
00:46:23,800 --> 00:46:25,280
KNOWS BY SAYING THESE THINGS, HE

1331
00:46:25,280 --> 00:46:29,840
WILL GET ME TO FIX HIS iPAD OR

1332
00:46:29,840 --> 00:46:31,120
HELP HIM PUT HIS SHOE ON OR

1333
00:46:31,120 --> 00:46:31,360
SOMETHING.

1334
00:46:31,360 --> 00:46:34,760
SO THE TYPE OF LANGUAGE -- I

1335
00:46:34,760 --> 00:46:37,120
THINK WE NEED TO DISTINGUISH

1336
00:46:37,120 --> 00:46:38,680
BETWEEN PEOPLE OF SIGNIFICANT

1337
00:46:38,680 --> 00:46:40,160
COGNITIVE IMPAIRMENT AND THOSE

1338
00:46:40,160 --> 00:46:41,080
WHO DON'T.

1339
00:46:41,080 --> 00:46:43,160
IT'S A VERY DIFFERENT LANGUAGE

1340
00:46:43,160 --> 00:46:43,760
LANDSCAPE FOR THOSE.

1341
00:46:43,760 --> 00:46:45,800
FOR MY SON, THE PROBLEM IS NOT

1342
00:46:45,800 --> 00:46:49,840
THAT HE DOESN'T HAVE THE ABILITY

1343
00:46:49,840 --> 00:46:51,880
TO SPEAK OR WRITE OR COMMUNICATE

1344
00:46:51,880 --> 00:46:53,200
ADVANCED CONCEPTS.

1345
00:46:53,200 --> 00:46:55,400
HE JUST DOESN'T HAVE ADVANCED

1346
00:46:55,400 --> 00:46:57,480
CONCEPTS BECAUSE OF HIS

1347
00:46:57,480 --> 00:46:59,240
SIGNIFICANT COGNITIVE

1348
00:46:59,240 --> 00:46:59,680
IMPAIRMENT.

1349
00:46:59,680 --> 00:47:01,120
OUR LANGUAGE GOALS ARE VERY

1350
00:47:01,120 --> 00:47:01,720
DIFFERENT.

1351
00:47:01,720 --> 00:47:04,320
JUST REALLY NEED TO EMPHASIZE

1352
00:47:04,320 --> 00:47:07,560
THAT YES, WE THE FAMILIES OF

1353
00:47:07,560 --> 00:47:09,200
MINIMALLY VERBAL INDIVIDUALS AND

1354
00:47:09,200 --> 00:47:10,920
MINIMALLY VERBAL INDIVIDUALS

1355
00:47:10,920 --> 00:47:12,960
THEMSELVES, WE NEED NEW

1356
00:47:12,960 --> 00:47:13,320
INTERVENTIONS.

1357
00:47:13,320 --> 00:47:16,000
I WAS SO EXCITED -- I HAVE TO

1358
00:47:16,000 --> 00:47:18,040
SAY THAT DR. A AUTUMN AUTUMN,

1359
00:47:18,040 --> 00:47:19,600
YOUR EXCITEMENT IS CONTAGIOUS --

1360
00:47:19,600 --> 00:47:21,480
DANIEL ALMIRALL, ABOUT THE

1361
00:47:21,480 --> 00:47:22,880
FUTURE OF ALL THESE DIFFERENT

1362
00:47:22,880 --> 00:47:24,000
MODALITIES AND COMBINING

1363
00:47:24,000 --> 00:47:26,000
TREATMENTS AND SEEING

1364
00:47:26,000 --> 00:47:27,080
SIGNIFICANT IMPACTS.

1365
00:47:27,080 --> 00:47:28,680
LIKE I WAS LIKE I WISH THEY HAD

1366
00:47:28,680 --> 00:47:31,080
THIS WHEN MY SON WAS YOUNGER.

1367
00:47:31,080 --> 00:47:34,200
BUT I THINK AS MUCH AS WE NEED

1368
00:47:34,200 --> 00:47:37,360
INTERVENTIONS, WE NEED

1369
00:47:37,360 --> 00:47:37,960
EVIDENCE-BASED INTERVENTIONS.

1370
00:47:37,960 --> 00:47:40,400
AND I LIKE DR. DANIEL ALMIRALL'S

1371
00:47:40,400 --> 00:47:42,320
EMPHASIS ON USING RANDOMIZED

1372
00:47:42,320 --> 00:47:44,920
CLINICAL TRIALS, CONTROLLED

1373
00:47:44,920 --> 00:47:46,680
EXPERIMENTS FOR EVALUATING

1374
00:47:46,680 --> 00:47:46,960
TREATMENTS.

1375
00:47:46,960 --> 00:47:49,520
AND I THINK THIS ABSOLUTELY IS

1376
00:47:49,520 --> 00:47:49,800
ESSENTIAL.

1377
00:47:49,800 --> 00:47:53,520
MY SON, HE HAS A PRETTY FRAGILE

1378
00:47:53,520 --> 00:47:53,760
AGENCY.

1379
00:47:53,760 --> 00:47:56,040
HE HAS LIMITED CONTROL OVER HIS

1380
00:47:56,040 --> 00:47:56,720
ENVIRONMENT.

1381
00:47:56,720 --> 00:47:58,040
AND IT IS ABSOLUTELY ESSENTIAL

1382
00:47:58,040 --> 00:48:01,400
THAT WE MAKE SURE THAT WHAT HE

1383
00:48:01,400 --> 00:48:02,760
COMMUNICATES REALLY REFLECTS HIS

1384
00:48:02,760 --> 00:48:04,080
AGENCY.

1385
00:48:04,080 --> 00:48:05,440
WE DON'T WANT TO RISK HIJACKING

1386
00:48:05,440 --> 00:48:07,600
THE AGENCY OF PEOPLE WHO ALREADY

1387
00:48:07,600 --> 00:48:11,360
HAVE SO LITTLE IMPACT ON THEIR

1388
00:48:11,360 --> 00:48:12,920
ENVIRONMENT BY GIVING THEM

1389
00:48:12,920 --> 00:48:14,600
INTERVENTIONS THAT DON'T

1390
00:48:14,600 --> 00:48:16,440
ACCURATELY REFLECT THEIR VOICE

1391
00:48:16,440 --> 00:48:17,720
AND THEIR AUTONOMY.

1392
00:48:17,720 --> 00:48:19,760
SO, I DO WANT TO CORRECT

1393
00:48:19,760 --> 00:48:20,560
SOMETHING THAT DR. STEPHEN

1394
00:48:20,560 --> 00:48:22,600
CAMARATA SAID, WHICH IS I AGREE

1395
00:48:22,600 --> 00:48:23,960
THERE IS A RIGHT TO COMMUNICATE

1396
00:48:23,960 --> 00:48:25,200
BUT I THINK THAT THAT NEEDS TO

1397
00:48:25,200 --> 00:48:28,520
BE MODIFIED TO A RIGHT TO

1398
00:48:28,520 --> 00:48:29,480
INDEPENDENT COMMUNICATION.

1399
00:48:29,480 --> 00:48:31,040
WHATEVER THAT LOOKS LIKE.

1400
00:48:31,040 --> 00:48:33,240
IF IT MEANS -- WHEN JONAH WAS A

1401
00:48:33,240 --> 00:48:36,240
LITTLE KID, HE LEARNED ONE SIGN,

1402
00:48:36,240 --> 00:48:36,440
MORE.

1403
00:48:36,440 --> 00:48:37,960
THAT WAS ALL HE HAD.

1404
00:48:37,960 --> 00:48:40,880
BUT HE USED IT IN A SURPRISINGLY

1405
00:48:40,880 --> 00:48:42,120
LARGE NUMBER OF CONTEXT.

1406
00:48:42,120 --> 00:48:44,880
HE USED IT TO ASK FOR THINGS HE

1407
00:48:44,880 --> 00:48:46,720
HADN'T BEEN GIVEN ANY OF YET.

1408
00:48:46,720 --> 00:48:47,200
THAT'S WHAT HE USED.

1409
00:48:47,200 --> 00:48:49,040
NOW HE HAS SOME LANGUAGE.

1410
00:48:49,040 --> 00:48:52,360
HE ALSO CAN SPELL SOME THINGS.

1411
00:48:52,360 --> 00:48:54,160
BUT THAT'S INDEPENDENT LANGUAGE.

1412
00:48:54,160 --> 00:48:56,240
AND I THINK THAT WE REALLY

1413
00:48:56,240 --> 00:48:57,600
HAVE -- THAT'S A LINE WE HAVE

1414
00:48:57,600 --> 00:48:58,920
TO, A BRIGHT LINE IN THE SAND

1415
00:48:58,920 --> 00:49:01,440
THAT WE NEED TO HAVE CONTROLLED

1416
00:49:01,440 --> 00:49:03,160
STUDIES TO DEMONSTRATE

1417
00:49:03,160 --> 00:49:08,400
INDEPENDENT LANGUAGE.

1418
00:49:08,400 --> 00:49:11,440
THANK YOU.

1419
00:49:11,440 --> 00:49:11,560
Y.

1420
00:49:11,560 --> 00:49:13,200
>>CONNIE KASARI: THANK
YOU,

1421
00:49:13,200 --> 00:49:13,680
IMPORTANT COMMENTS.

1422
00:49:13,680 --> 00:49:15,120
NOW WE ARE NOT GOING TO HAVE

1423
00:49:15,120 --> 00:49:17,160
OPEN DISCUSSION AS JUDITH SAID,

1424
00:49:17,160 --> 00:49:19,080
WE ARE GOING TO WAIT UNTIL THE

1425
00:49:19,080 --> 00:49:20,920
END AND MOVE TO MEANINGFUL

1426
00:49:20,920 --> 00:49:26,000
OUTCOME MEASURES AND HELEN, IT'S

1427
00:49:26,000 --> 00:49:26,560
YOURS.

1428
00:49:26,560 --> 00:49:27,160
>>HELEN TAGER-FLUSBERG:
THANK

1429
00:49:27,160 --> 00:49:28,600
YOU CONNIE AND THANK YOU TO

1430
00:49:28,600 --> 00:49:29,680
EVERYONE IN THE PREVIOUS

1431
00:49:29,680 --> 00:49:30,680
SESSION.

1432
00:49:30,680 --> 00:49:32,240
SO IMPORTANT TO THINK ABOUT

1433
00:49:32,240 --> 00:49:33,840
RESEARCH DESIGN AND WHAT OUR

1434
00:49:33,840 --> 00:49:34,680
METHODS ARE.

1435
00:49:34,680 --> 00:49:37,600
BUT THE TOPIC THAT HAS COME UP

1436
00:49:37,600 --> 00:49:43,960
YESTERDAY AND THE TOPIC THAT WAS

1437
00:49:43,960 --> 00:49:44,680
ALLUDED TO IN THE PREVIOUS

1438
00:49:44,680 --> 00:49:46,240
SESSION IS THE ISSUE OF

1439
00:49:46,240 --> 00:49:49,320
MEASURING MEANINGFUL OUTCOMES.

1440
00:49:49,320 --> 00:49:52,360
AND I DON'T THINK THIS TOPIC

1441
00:49:52,360 --> 00:49:55,760
WILL AGREE ON COMPLETELY THIS

1442
00:49:55,760 --> 00:49:56,240
AFTERNOON.

1443
00:49:56,240 --> 00:50:06,760
BUT I THINK IT'S ABSOLUTELY

1444
00:50:06,760 --> 00:50:09,240
CRUCIAL AND OUR FIRST SPEAKER

1445
00:50:09,240 --> 00:50:11,080
THIS AFTERNOON, CATHY LORD WILL

1446
00:50:11,080 --> 00:50:13,440
TALK ABOUT RESEARCH PERSPECTIVES

1447
00:50:13,440 --> 00:50:17,080
ON DEVELOPING MEANINGFUL OUTCOME

1448
00:50:17,080 --> 00:50:23,560
MEASURES.

1449
00:50:23,560 --> 00:50:25,440
>>CATHY LORD: I'M TRYING
TO

1450
00:50:25,440 --> 00:50:26,120
SHARE MY SCREEN.

1451
00:50:26,120 --> 00:50:31,480
THERE WE GO.

1452
00:50:31,480 --> 00:50:32,760
I ALSO WANT TO JUST THANK

1453
00:50:32,760 --> 00:50:36,640
EVERYBODY FOR INCLUDING ME IN

1454
00:50:36,640 --> 00:50:36,840
THIS.

1455
00:50:36,840 --> 00:50:38,760
AND I'M SO IMPRESSED THAT PEOPLE

1456
00:50:38,760 --> 00:50:40,200
HAVE WORKED TOGETHER FROM A

1457
00:50:40,200 --> 00:50:41,840
VARIETY OF DIFFERENT

1458
00:50:41,840 --> 00:50:42,360
PERSPECTIVES.

1459
00:50:42,360 --> 00:50:47,240
I'M GOING TO TRY TO GIVE

1460
00:50:47,240 --> 00:50:48,720
EXAMPLES FROM SOME OF THE WORK I

1461
00:50:48,720 --> 00:50:50,760
HAVE BEEN INVOLVED IN OR

1462
00:50:50,760 --> 00:50:51,880
PERIPHERALLY INVOLVED IN, AND

1463
00:50:51,880 --> 00:50:52,840
CONNIE, YOU'LL SEE SOME OF THE

1464
00:50:52,840 --> 00:50:55,880
WORK I JUST VIEWED FROM ACROSS

1465
00:50:55,880 --> 00:50:56,160
THE HALLWAY.

1466
00:50:56,160 --> 00:50:58,120
I DO HAVE SOME CONFLICTS OF

1467
00:50:58,120 --> 00:50:59,600
INTEREST BUT I'M NOT TRYING TO

1468
00:50:59,600 --> 00:51:00,920
SELL YOU ANYTHING AND TODAY

1469
00:51:00,920 --> 00:51:02,960
NOTHING I TALK ABOUT IS FOR

1470
00:51:02,960 --> 00:51:03,160
SALE.

1471
00:51:03,160 --> 00:51:05,160
SO HOPEFULLY THAT WILL HELP.

1472
00:51:05,160 --> 00:51:07,160
I'M REALLY TRYING TO MAKE TWO

1473
00:51:07,160 --> 00:51:08,080
POINTS HERE TODAY.

1474
00:51:08,080 --> 00:51:10,200
AND I HAD A THIRD POINT WHICH IS

1475
00:51:10,200 --> 00:51:12,040
THE INVOLVEMENT OF PARTICIPANTS

1476
00:51:12,040 --> 00:51:13,640
AND STAKEHOLDERS BUT I THINK

1477
00:51:13,640 --> 00:51:14,440
OTHER PEOPLE HAVE TALKED ABOUT

1478
00:51:14,440 --> 00:51:15,240
THAT A LOT.

1479
00:51:15,240 --> 00:51:17,560
SO THE FIRST ONE IS, WE NEED TO

1480
00:51:17,560 --> 00:51:19,600
MAKE OBSERVATIONS.

1481
00:51:19,600 --> 00:51:22,640
WE NEED TO SEE WHAT IS

1482
00:51:22,640 --> 00:51:22,880
HAPPENING.

1483
00:51:22,880 --> 00:51:25,520
AND I KNOW THAT THIS IS HARD FOR

1484
00:51:25,520 --> 00:51:27,120
SOME STAKEHOLDERS.

1485
00:51:27,120 --> 00:51:32,800
I DEFINITELY HAD FEEDBACK THAT I

1486
00:51:32,800 --> 00:51:33,400
DON'T WANT TO DOD THIS AND I

1487
00:51:33,400 --> 00:51:34,080
DON'T WANT TO BE WATCHED.

1488
00:51:34,080 --> 00:51:35,920
I THINK WE HAVE TO FIGURE OUT

1489
00:51:35,920 --> 00:51:37,280
HOW TO DO THIS WITH RESPECT AND

1490
00:51:37,280 --> 00:51:37,720
COMFORT.

1491
00:51:37,720 --> 00:51:41,000
BUT I DO THINK WE NEED TO SEE

1492
00:51:41,000 --> 00:51:45,280
WHAT IS HAPPENING WHEN PEOPLE

1493
00:51:45,280 --> 00:51:45,600
COMMUNICATE.

1494
00:51:45,600 --> 00:51:47,120
AND WHAT WORKS.

1495
00:51:47,120 --> 00:51:48,520
I THINK REALISTICALLY, WE ALSO

1496
00:51:48,520 --> 00:51:51,000
HAVE TO FIGURE OUT WHAT IS AT

1497
00:51:51,000 --> 00:51:52,800
LEAST IN TERMS OF THE CLINICAL

1498
00:51:52,800 --> 00:51:54,320
ESTABLISHMENT TO, DO THIS OVER

1499
00:51:54,320 --> 00:51:57,280
SHORT TIMES THAT GIVE US

1500
00:51:57,280 --> 00:51:58,320
RELIABLE INFORMATION.

1501
00:51:58,320 --> 00:51:59,880
AND BECAUSE WE CAN'T JUST WATCH

1502
00:51:59,880 --> 00:52:02,320
PEOPLE FOR HOURS AND HOURS AND

1503
00:52:02,320 --> 00:52:04,520
HOURS IF WE HAVE TO BILL THEM,

1504
00:52:04,520 --> 00:52:08,480
WHICH IS THE REALITY OF AMERICAN

1505
00:52:08,480 --> 00:52:08,840
MEDICINE.

1506
00:52:08,840 --> 00:52:11,120
I THINK WE HAVE TO LINK THESE

1507
00:52:11,120 --> 00:52:12,280
FINDINGS TO MEANINGFUL MEASURES

1508
00:52:12,280 --> 00:52:14,880
OF CHANGE THAT GO BACK TO LIKE

1509
00:52:14,880 --> 00:52:16,840
SEVERAL PEOPLE HAVE REFERRED TO,

1510
00:52:16,840 --> 00:52:18,480
I THINK STEPHEN, ABOUT THE IDEA

1511
00:52:18,480 --> 00:52:20,440
OF WHAT ARE OUR REAL GOALS?

1512
00:52:20,440 --> 00:52:22,760
AND WE HAVE TO HAVE MEASUREMENTS

1513
00:52:22,760 --> 00:52:25,720
THAT WE CAN DO ACROSS CONTEXT

1514
00:52:25,720 --> 00:52:26,080
AND PARTNERS.

1515
00:52:26,080 --> 00:52:29,240
BECAUSE COMMUNICATION IS TIED TO

1516
00:52:29,240 --> 00:52:32,920
CONTEXT T DOESN'T OCCUR IN THE

1517
00:52:32,920 --> 00:52:33,080
SKY.

1518
00:52:33,080 --> 00:52:34,480
IT OCCURS BETWEEN PEOPLE AND

1519
00:52:34,480 --> 00:52:35,000
ABOUT THINGS.

1520
00:52:35,000 --> 00:52:37,680
AND THOSE THINGS ARE GOING TO BE

1521
00:52:37,680 --> 00:52:37,920
DIFFERENT.

1522
00:52:37,920 --> 00:52:40,120
AND IDEALLY IF WE COULD HAVE

1523
00:52:40,120 --> 00:52:42,520
MEASUREMENTS THAT WERE CONSTANT

1524
00:52:42,520 --> 00:52:43,320
ACROSS STUDIES, NOT THAT THEY

1525
00:52:43,320 --> 00:52:46,000
ARE THE ONLY THING WE DO BY ANY

1526
00:52:46,000 --> 00:52:46,200
MEANS.

1527
00:52:46,200 --> 00:52:48,560
IT WOULD HELP US MAKE THE

1528
00:52:48,560 --> 00:52:50,840
HETEROGENEITY THAT IS OBVIOUS

1529
00:52:50,840 --> 00:52:52,160
AND FOR EXAMPLE DANNY TALKED

1530
00:52:52,160 --> 00:52:55,240
ABOUT MORE COMPREHENSIBLE.

1531
00:52:55,240 --> 00:52:57,240
WE NEED TO RECOGNIZE WE ARE

1532
00:52:57,240 --> 00:52:58,800
TALKING ABOUT DEVELOPMENT HERE.

1533
00:52:58,800 --> 00:53:02,440
I AM SO CURIOUS ABOUT HOW DO

1534
00:53:02,440 --> 00:53:04,360
PEOPLE WHO MOVE FROM HAVING

1535
00:53:04,360 --> 00:53:06,040
MINIMAL SPOKEN LANGUAGE TO BEING

1536
00:53:06,040 --> 00:53:08,320
ABLE TO COMMUNICATE MORE

1537
00:53:08,320 --> 00:53:09,120
FLUENTLY IN DIFFERENT FORMS?

1538
00:53:09,120 --> 00:53:11,160
HOW DOES THAT HAPPEN?

1539
00:53:11,160 --> 00:53:13,720
AND WE NEED TO LEARN MORE ABOUT

1540
00:53:13,720 --> 00:53:17,840
THAT PROCESS, NOT JUST YES OR

1541
00:53:17,840 --> 00:53:18,080
NO.

1542
00:53:18,080 --> 00:53:20,960
WE ALSO NEED TO THINK ABOUT NOT

1543
00:53:20,960 --> 00:53:22,440
JUST ORAL SPEECH BUT USE OF

1544
00:53:22,440 --> 00:53:25,520
DEVICES AND ALSO THINGS LIKE

1545
00:53:25,520 --> 00:53:26,080
GESTURES AND VOCALIZATIONS.

1546
00:53:26,080 --> 00:53:28,040
SO I'M JUST GOING TO USE

1547
00:53:28,040 --> 00:53:29,200
EXAMPLES.

1548
00:53:29,200 --> 00:53:30,200
THIS IS CONNIE'S.

1549
00:53:30,200 --> 00:53:33,800
SO THIS IS THE DATA ABOUT THE

1550
00:53:33,800 --> 00:53:34,880
SPEECH, EFFECT OF SPEECH

1551
00:53:34,880 --> 00:53:36,240
GENERATING DEVICES.

1552
00:53:36,240 --> 00:53:37,520
YOU'LL SEE THE LINE HERE, THE

1553
00:53:37,520 --> 00:53:38,800
ONE THAT GOES WAY UP.

1554
00:53:38,800 --> 00:53:40,240
THOSE ARE KIDS IN HER STUDY.

1555
00:53:40,240 --> 00:53:43,800
AND THE FACT THAT THEY USE MORE

1556
00:53:43,800 --> 00:53:45,120
SPONTANEOUS UTTERANCES THAN KIDS

1557
00:53:45,120 --> 00:53:46,320
WHO DIDN'T HAVE SPEECH

1558
00:53:46,320 --> 00:53:46,720
GENERATION.

1559
00:53:46,720 --> 00:53:50,280
THIS IS THE SAME STUDY THAT

1560
00:53:50,280 --> 00:53:52,040
DANNY MENTIONED.

1561
00:53:52,040 --> 00:53:55,840
BUT I THINK WHAT IS REALLY

1562
00:53:55,840 --> 00:53:59,360
IMPORTANT HERE IS THAT WHEN MY

1563
00:53:59,360 --> 00:54:00,920
POSTDOC AND CONNIE LOOKED

1564
00:54:00,920 --> 00:54:04,440
CAREFULLY AT THESE DATE ADD.

1565
00:54:04,440 --> 00:54:06,240
OF THE LANGUAGE, INCLUDING THE

1566
00:54:06,240 --> 00:54:07,440
SPEECH GENERATING DEVICE, THAT

1567
00:54:07,440 --> 00:54:09,480
THE KIDS USED DURING THIS, ONLY

1568
00:54:09,480 --> 00:54:12,440
10% OF IT WAS ACTUALLY USING THE

1569
00:54:12,440 --> 00:54:12,920
DEVICE.

1570
00:54:12,920 --> 00:54:15,160
SO WHAT WAS HAPPENING WAS THAT

1571
00:54:15,160 --> 00:54:17,120
THE KIDS WHO WERE IN THE

1572
00:54:17,120 --> 00:54:18,360
CONDITION WHO HAD ACCESS TO

1573
00:54:18,360 --> 00:54:21,520
SPEECH GENERATING DEVICE, WERE

1574
00:54:21,520 --> 00:54:22,240
TALKING MORE.

1575
00:54:22,240 --> 00:54:24,200
NOW THAT IS NOT WHAT I WOULD

1576
00:54:24,200 --> 00:54:25,960
HAVE EXPECTED AT ALL.

1577
00:54:25,960 --> 00:54:28,360
AND MY POINT IS NOT THAT THIS

1578
00:54:28,360 --> 00:54:29,120
ALWAYS HAPPENS.

1579
00:54:29,120 --> 00:54:30,720
BUT THAT WE NEED TO OBSERVE.

1580
00:54:30,720 --> 00:54:32,600
WE NEED TO THINK ABOUT WHAT WAS

1581
00:54:32,600 --> 00:54:32,920
HAPPENING.

1582
00:54:32,920 --> 00:54:36,040
AND IT TURNED OUT THAT KIDS WHO

1583
00:54:36,040 --> 00:54:37,840
HAD BETTER ATTENTION WERE MORE

1584
00:54:37,840 --> 00:54:38,960
RESPONSIVE TO THE SPEECH

1585
00:54:38,960 --> 00:54:40,240
GENERATING DEVICE.

1586
00:54:40,240 --> 00:54:41,920
AND TALKED MORE.

1587
00:54:41,920 --> 00:54:43,200
AND I WOULD HAVE PREDICTED THAT

1588
00:54:43,200 --> 00:54:44,600
THE SPEECH GENERATING DEVICE

1589
00:54:44,600 --> 00:54:47,560
WOULD HAVE IMPROVED JOIN

1590
00:54:47,560 --> 00:54:48,000
ATTENTION.

1591
00:54:48,000 --> 00:54:50,560
BUT THAT IS NOT WHAT HAPPENED

1592
00:54:50,560 --> 00:54:50,760
HERE.

1593
00:54:50,760 --> 00:54:54,160
SO MY POINT IS, WE NEED TO STOP

1594
00:54:54,160 --> 00:54:57,280
AND LOOK AT WHAT IS GOING ON.

1595
00:54:57,280 --> 00:54:58,720
SO I'M GOING TO GIVE YOU ONE

1596
00:54:58,720 --> 00:55:00,040
EXAMPLE BUT THIS IS REALLY JUST

1597
00:55:00,040 --> 00:55:00,800
AN EXAMPLE.

1598
00:55:00,800 --> 00:55:02,240
WE HAVE BEEN DEVELOPING

1599
00:55:02,240 --> 00:55:04,280
SOMETHING CALLED THE BOSCC, A

1600
00:55:04,280 --> 00:55:06,440
STANDARD WAY OF MEASURING SOCIAL

1601
00:55:06,440 --> 00:55:07,040
COMMUNICATION.

1602
00:55:07,040 --> 00:55:10,640
IT INVOLVES 12-16 MINUTES OF

1603
00:55:10,640 --> 00:55:13,320
VIDEOTAPED PLAY FOR YOUNGER KIDS

1604
00:55:13,320 --> 00:55:16,000
AND THEN THERE ARE MATERIALS,

1605
00:55:16,000 --> 00:55:17,200
BASICALLY INCLUDING BAR GAMES

1606
00:55:17,200 --> 00:55:18,880
FOR ADOLESCENTS AND ADULTS.

1607
00:55:18,880 --> 00:55:20,400
ANYONE CAN GIVE THIS.

1608
00:55:20,400 --> 00:55:22,760
THE MORE NAIVE THE PLAY PARTNER,

1609
00:55:22,760 --> 00:55:24,480
THE BETTER.

1610
00:55:24,480 --> 00:55:25,920
THIS PERSON CAN BE BLIND TO

1611
00:55:25,920 --> 00:55:29,600
TREATMENT STATUS, WHICH IS SO

1612
00:55:29,600 --> 00:55:32,040
IMPORTANT BECAUSE THAT, AS

1613
00:55:32,040 --> 00:55:33,040
BIRDIE SAID, THAT IS NOT

1614
00:55:33,040 --> 00:55:34,760
NECESSARILY A PART OF WHAT

1615
00:55:34,760 --> 00:55:35,440
PEOPLE OFTEN DO.

1616
00:55:35,440 --> 00:55:38,560
AND IT CAN BE CODED BY SOMEBODY

1617
00:55:38,560 --> 00:55:38,840
ELSE.

1618
00:55:38,840 --> 00:55:39,320
IT'S VIDEOTAPED.

1619
00:55:39,320 --> 00:55:40,800
WHO DOESN'T KNOW IF THIS IS

1620
00:55:40,800 --> 00:55:42,640
BEFORE OR AFTER, IF THE KID IS

1621
00:55:42,640 --> 00:55:43,640
IN A CONDITION, WHAT THE GOALS

1622
00:55:43,640 --> 00:55:46,920
OF THE STUDY ARE.

1623
00:55:46,920 --> 00:55:49,960
NOW WE TOOK AIM DATA AGAIN,

1624
00:55:49,960 --> 00:55:51,080
THANKS TO CONNIE.

1625
00:55:51,080 --> 00:55:53,160
SO OF AN INTERVENTION THAT WE

1626
00:55:53,160 --> 00:55:54,760
WERE PART OF.

1627
00:55:54,760 --> 00:55:56,640
AND PEOPLE WERE INTERACTING WITH

1628
00:55:56,640 --> 00:55:59,440
THEIR THERAPISTS AND THEY WERE

1629
00:55:59,440 --> 00:56:01,400
ALSO DOING A DIFFERENT

1630
00:56:01,400 --> 00:56:04,360
INTERACTION WITH THEIR PARENTS.

1631
00:56:04,360 --> 00:56:05,560
AND WE WERE INTERESTED IN

1632
00:56:05,560 --> 00:56:07,400
INITIALLY WHEN WE TRIED USING

1633
00:56:07,400 --> 00:56:09,840
THE DATA FROM THE PARENT DATA,

1634
00:56:09,840 --> 00:56:10,800
NOBODY CHANGED.

1635
00:56:10,800 --> 00:56:13,480
BUT IN FACT, THE CAREGIVERS, AND

1636
00:56:13,480 --> 00:56:16,880
THIS IS RELATED TO DANNY --

1637
00:56:16,880 --> 00:56:20,240
THEIR 6-WEEK RESPONSES WERE THAT

1638
00:56:20,240 --> 00:56:22,760
MANY PEOPLE HAD CHANGED.

1639
00:56:22,760 --> 00:56:23,560
NOT THE CAREGIVERS, THE

1640
00:56:23,560 --> 00:56:23,880
THERAPISTS.

1641
00:56:23,880 --> 00:56:26,480
WHAT WE WERE ABLE TO DO IS USE

1642
00:56:26,480 --> 00:56:27,760
THESE OBSERVATIONAL CODES.

1643
00:56:27,760 --> 00:56:30,200
AND ON THE LEFT TO CODE WHETHER

1644
00:56:30,200 --> 00:56:31,440
THE KID CHANGED WITH THE

1645
00:56:31,440 --> 00:56:35,320
CAREGIVERS, WHICH THEY DID NOT,

1646
00:56:35,320 --> 00:56:36,560
AND WHETHER THEY CHANGED WITH

1647
00:56:36,560 --> 00:56:39,000
THE THERAPIST, WHICH THEY DID,

1648
00:56:39,000 --> 00:56:42,600
PARTICULARLY IN ONE OF THE K.

1649
00:56:42,600 --> 00:56:45,440
SO AGAIN, MY POINT S WE NEED TO

1650
00:56:45,440 --> 00:56:46,200
SEE WHAT HAPPENS.

1651
00:56:46,200 --> 00:56:48,640
WE ALSO CAN TAKE THESE CODES AND

1652
00:56:48,640 --> 00:56:50,320
WE COULD SHOW THAT FOR EXAMPLE,

1653
00:56:50,320 --> 00:56:53,680
ON THE LEFT, THE KIDS WERE MORE

1654
00:56:53,680 --> 00:56:55,520
RESPONSIVE FROM THE START WITH

1655
00:56:55,520 --> 00:56:59,440
THEIR OWN CAREGIVERS.

1656
00:56:59,440 --> 00:57:01,040
THAT'S THE ENGAGEMENT.

1657
00:57:01,040 --> 00:57:03,200
THEY ALSO SHOWED MORE RRBs

1658
00:57:03,200 --> 00:57:05,120
WERE MORE ACTIVE AND MORE LIKELY

1659
00:57:05,120 --> 00:57:06,920
TO BE AGGRESSIVE.

1660
00:57:06,920 --> 00:57:08,720
SO WE HAVE BEEN TRYING TO USE

1661
00:57:08,720 --> 00:57:10,560
THESE MEASURES WORKING WITH

1662
00:57:10,560 --> 00:57:13,680
SOPHIE AND A WHOLE SLEW OF OTHER

1663
00:57:13,680 --> 00:57:17,240
PEOPLE HERE TO LOOK AT

1664
00:57:17,240 --> 00:57:17,600
INTERVENTIONS.

1665
00:57:17,600 --> 00:57:18,760
AGAIN, IN MICHIGAN, OUR GROUP

1666
00:57:18,760 --> 00:57:22,840
WAS ABLE TO PARTICIPATE IN ESDM

1667
00:57:22,840 --> 00:57:23,040
TRIALS.

1668
00:57:23,040 --> 00:57:25,760
THESE ARE ALL RANDOMIZED CONTROL

1669
00:57:25,760 --> 00:57:27,880
TRIALS.

1670
00:57:27,880 --> 00:57:29,680
ESI AND GAS PER.

1671
00:57:29,680 --> 00:57:31,440
THESE ARE VERY DIFFERENT

1672
00:57:31,440 --> 00:57:31,800
INTERVENTIONS.

1673
00:57:31,800 --> 00:57:35,120
AND I NEED TO REALLY POINT OUT

1674
00:57:35,120 --> 00:57:37,320
THIS IS JUST A SENSE OF WHEN IT

1675
00:57:37,320 --> 00:57:39,080
DOES IT WORK?

1676
00:57:39,080 --> 00:57:40,960
WHAT WE FOUND, AGAIN, USING

1677
00:57:40,960 --> 00:57:42,560
THESE CODINGS BY SOMEBODY WHO

1678
00:57:42,560 --> 00:57:43,840
DIDN'T KNOW IF THE KID WAS

1679
00:57:43,840 --> 00:57:46,360
BEFORE OR AFTER, DIDN'T KNOW

1680
00:57:46,360 --> 00:57:47,600
WHICH INTERVENTION THEY WERE IN,

1681
00:57:47,600 --> 00:57:51,320
IS THAT IN ESDM ON THE RIGHT,

1682
00:57:51,320 --> 00:57:53,840
THE KIDS IN INTERVENTION GOT

1683
00:57:53,840 --> 00:57:55,200
BETTER MORE THAN THE KIDS WHO

1684
00:57:55,200 --> 00:57:56,400
WERE NOT IN THE INTERVENTION.

1685
00:57:56,400 --> 00:57:59,960
AND THIS IS REALLY A

1686
00:57:59,960 --> 00:58:00,760
GENERALIZATION TRIAL BECAUSE

1687
00:58:00,760 --> 00:58:03,880
THIS WAS NOT THE GOAL OF THIS

1688
00:58:03,880 --> 00:58:04,080
STUDY.

1689
00:58:04,080 --> 00:58:06,280
SO THIS MAKES SOME PEOPLE QUITE

1690
00:58:06,280 --> 00:58:06,480
NERVOUS.

1691
00:58:06,480 --> 00:58:10,040
IN ESI USING ONLY OUR DATA

1692
00:58:10,040 --> 00:58:12,160
BECAUSE AMY COULDN'T EVER GET US

1693
00:58:12,160 --> 00:58:14,600
HER DATA, WE SAW THE SAME THING.

1694
00:58:14,600 --> 00:58:16,160
SO SYSTEMATICALLY AND UP AT THE

1695
00:58:16,160 --> 00:58:19,760
TOP IS, SOCIAL COMMUNICATION,

1696
00:58:19,760 --> 00:58:21,080
NEXT REPETITIVE LEADERS AND THE

1697
00:58:21,080 --> 00:58:22,400
NEXT IS THE TOTAL.

1698
00:58:22,400 --> 00:58:23,040
EVERYBODY CHANGED A LITTLE BIT

1699
00:58:23,040 --> 00:58:25,240
BUT THE KIDS IN THE INTERVENTION

1700
00:58:25,240 --> 00:58:25,720
CHANGED MORE.

1701
00:58:25,720 --> 00:58:27,720
WE DID NOT SEE THIS FOR JASPER

1702
00:58:27,720 --> 00:58:32,040
BUT JASPER WAS JUST 12 WEEKS AND

1703
00:58:32,040 --> 00:58:33,840
FAR LESS INTENSE.

1704
00:58:33,840 --> 00:58:36,880
ONE OF THE THINGS WE WERE ABLE

1705
00:58:36,880 --> 00:58:39,280
TO DO WAS CODE THE CAREGIVER'S

1706
00:58:39,280 --> 00:58:39,640
BEHAVIOR.

1707
00:58:39,640 --> 00:58:43,040
THIS IS AN INSTRUMENT OR CODING

1708
00:58:43,040 --> 00:58:49,960
SYSTEM FOR THE SAME VIDEO CALLED

1709
00:58:49,960 --> 00:58:50,200
THE MONSY.

1710
00:58:50,200 --> 00:58:51,280
IS IT A PARENT CHANGED MORE THAN

1711
00:58:51,280 --> 00:58:52,560
THE KIDS DID.

1712
00:58:52,560 --> 00:58:54,760
AND THE PARENTS AS YOU CAN SEE

1713
00:58:54,760 --> 00:58:57,760
ON THE BOTTOM LEFT IN

1714
00:58:57,760 --> 00:58:59,240
INTERVENTIONS, CHANGED MORE THAN

1715
00:58:59,240 --> 00:59:00,400
PARENTS NOT INTERVENTIONS.

1716
00:59:00,400 --> 00:59:02,760
AND THIS ACTUALLY ACCOUNTED FOR

1717
00:59:02,760 --> 00:59:05,480
THE CHANGES OF THE KIDS.

1718
00:59:05,480 --> 00:59:08,000
SO, ONE OF THE THINGS WE CAN

1719
00:59:08,000 --> 00:59:10,440
TELL, WE CAN LEARN FROM

1720
00:59:10,440 --> 00:59:10,680
OBSERVING.

1721
00:59:10,680 --> 00:59:13,720
WE ALSO HAVE BEEN TRYING TO GET

1722
00:59:13,720 --> 00:59:15,520
AUTOMATIC MEASURES FROM THIS.

1723
00:59:15,520 --> 00:59:19,040
AND THIS HAS BEEN BACK TO FRED'S

1724
00:59:19,040 --> 00:59:19,720
COMMENT.

1725
00:59:19,720 --> 00:59:22,400
HUNDREDS OF THOUSANDS OF DOLLARS

1726
00:59:22,400 --> 00:59:23,080
LATER.

1727
00:59:23,080 --> 00:59:24,960
ENGINEERS FROM USC AND GEORGIA

1728
00:59:24,960 --> 00:59:25,320
TECH.

1729
00:59:25,320 --> 00:59:27,480
WE HAVE A FEW MEASURES.

1730
00:59:27,480 --> 00:59:29,720
SO FOR EXAMPLE, WITH OLDER KIDS

1731
00:59:29,720 --> 00:59:33,120
FROM THESE STUDIES, THE LATENCY

1732
00:59:33,120 --> 00:59:36,240
TO RESPOND CHANGED.

1733
00:59:36,240 --> 00:59:38,000
A METHOD OF OUGHTMATICALLY

1734
00:59:38,000 --> 00:59:39,960
CODING WHETHER THE CHILD IN THE

1735
00:59:39,960 --> 00:59:42,480
PARENT ARE LOOKING AT THE SAME

1736
00:59:42,480 --> 00:59:42,680
THING.

1737
00:59:42,680 --> 00:59:46,480
AND THAT ALSO CHANGES FOR THE

1738
00:59:46,480 --> 00:59:47,480
LITTLELER KIDS.

1739
00:59:47,480 --> 00:59:49,400
SO WE ARE NOW, AND I THINK THE

1740
00:59:49,400 --> 00:59:53,320
WHOLE GROUP OF US, INCLUDING

1741
00:59:53,320 --> 00:59:56,720
HELEN AND CONNIE AND SOPHIE AND

1742
00:59:56,720 --> 00:59:57,760
OTHERS, ARE TRYING TO FIGURE OUT

1743
00:59:57,760 --> 01:00:02,080
IF WE CAN DO THIS BETTER.

1744
01:00:02,080 --> 01:00:04,880
I THINK JUST TO COME TO A

1745
01:00:04,880 --> 01:00:06,760
SUMMARY, MOST CHANGES ARE

1746
01:00:06,760 --> 01:00:07,000
GRADUAL.

1747
01:00:07,000 --> 01:00:09,000
THERE IS A FEW EUREKA MOMENTS

1748
01:00:09,000 --> 01:00:10,760
BUT MOST CHANGES ARE GRADUAL.

1749
01:00:10,760 --> 01:00:13,200
SO WE NEED TO KNOW FOR PEOPLE

1750
01:00:13,200 --> 01:00:14,840
WHO ARE NON-SPEAKING PEOPLE WHO

1751
01:00:14,840 --> 01:00:18,080
HAVE COME TO COMMUNICATE WITH

1752
01:00:18,080 --> 01:00:19,560
DEVICES INDEPENDENTLY, SO BACK

1753
01:00:19,560 --> 01:00:20,680
TO AMY'S COMMENT.

1754
01:00:20,680 --> 01:00:22,920
WE NEED TO KNOW HOW DID THIS

1755
01:00:22,920 --> 01:00:23,280
HAPPEN?

1756
01:00:23,280 --> 01:00:25,360
MOST CHANGES IN COMMUNICATION

1757
01:00:25,360 --> 01:00:26,280
ARE AFFECTED BY THE ENVIRONMENT.

1758
01:00:26,280 --> 01:00:28,760
SO WE NEED TO BE ABLE TO TEST

1759
01:00:28,760 --> 01:00:31,400
DIFFERENT PARTNERS AND DIFFERENT

1760
01:00:31,400 --> 01:00:31,640
PLACES.

1761
01:00:31,640 --> 01:00:32,800
AND THE BEST MEASURE OF CHANGE

1762
01:00:32,800 --> 01:00:34,360
WILL DEPEND ON WHAT THE

1763
01:00:34,360 --> 01:00:35,040
INTERVENTION IS.

1764
01:00:35,040 --> 01:00:36,720
SO THERE ISN'T GOING TO BE ONE

1765
01:00:36,720 --> 01:00:37,920
THING THAT WORKS FOR EVERYTHING.

1766
01:00:37,920 --> 01:00:41,520
BUT WE DO WANT TO HAVE SOME

1767
01:00:41,520 --> 01:00:41,880
STANDARDIZATION.

1768
01:00:41,880 --> 01:00:42,840
AND TO REMEMBER THAT WE WANT TO

1769
01:00:42,840 --> 01:00:45,880
COME BACK TO OUR GOALS, WHICH

1770
01:00:45,880 --> 01:00:46,840
ARE MEANINGFUL CHANGE THAT

1771
01:00:46,840 --> 01:00:49,680
ALLOWS PEOPLE TO COMMUNICATE.

1772
01:00:49,680 --> 01:00:51,440
SO THIS WORKED LIKE EVERYBODY

1773
01:00:51,440 --> 01:00:53,280
ELSE'S IS VERY DEPENDENT ON MY

1774
01:00:53,280 --> 01:00:54,600
COLLEAGUES AND EVERYBODY ELSE.

1775
01:00:54,600 --> 01:00:56,920
BUT I JUST WANT TO THANK YOU FOR

1776
01:00:56,920 --> 01:01:01,600
LISTENING.

1777
01:01:01,600 --> 01:01:02,840
>>HELEN TAGER-FLUSBERG:
THANK

1778
01:01:02,840 --> 01:01:04,360
YOU VERY MUCH, KATHY.

1779
01:01:04,360 --> 01:01:06,000
THAT'S A GREAT START TO THIS

1780
01:01:06,000 --> 01:01:07,240
SESSION ON OUTCOME MEASURES.

1781
01:01:07,240 --> 01:01:11,600
WE'LL TURN NOW TO VANESSA BAL.

1782
01:01:11,600 --> 01:01:14,400
VANESSA WILL BE SPEAKING ABOUT

1783
01:01:14,400 --> 01:01:15,800
EMOTIONAL HEALTH AND WELL-BEING

1784
01:01:15,800 --> 01:01:19,520
AS AN OUTCOME AND INDICATOR OF

1785
01:01:19,520 --> 01:01:21,640
INTERVENTION SUCCESS.

1786
01:01:21,640 --> 01:01:23,040
AND THANK YOU VANESSA.

1787
01:01:23,040 --> 01:01:26,680
YOU'RE UP AND RUNNING WITH YOUR

1788
01:01:26,680 --> 01:01:27,760
PRESENTATION AND I'LL HAND THE

1789
01:01:27,760 --> 01:01:29,040
FLOOR OVER TO YOU.

1790
01:01:29,040 --> 01:01:30,520
>>VANESSA BAL: THANK YOU
VERY

1791
01:01:30,520 --> 01:01:30,920
MUCH.

1792
01:01:30,920 --> 01:01:32,520
IT'S REALLY AN HONOR TO HAVE

1793
01:01:32,520 --> 01:01:36,360
BEEN INVITED TODAY.

1794
01:01:36,360 --> 01:01:37,960
AND I MY CLIS CLOSURE IS AT THE

1795
01:01:37,960 --> 01:01:38,960
BOTTOM BUT THE MOST IMPORTANT IS

1796
01:01:38,960 --> 01:01:40,880
THE THAT I'M A CLINICAL

1797
01:01:40,880 --> 01:01:41,440
PSYCHOLOGIST.

1798
01:01:41,440 --> 01:01:43,000
I'M NOT A LANGUAGE RESEARCHER OR

1799
01:01:43,000 --> 01:01:44,800
A LANGUAGE INTERVENTIONIST.

1800
01:01:44,800 --> 01:01:47,400
AND SO I THINK MAYBE THAT BIAS

1801
01:01:47,400 --> 01:01:48,840
WILL COME THROUGH PRETTY CLEARLY

1802
01:01:48,840 --> 01:01:52,400
IN WHAT I'M GOING TO TALK ABOUT

1803
01:01:52,400 --> 01:01:52,760
TODAY.

1804
01:01:52,760 --> 01:01:54,960
SO, I WANTED TO SORT OF TAKE A

1805
01:01:54,960 --> 01:01:56,880
QUICK SECOND TO REFLECT.

1806
01:01:56,880 --> 01:02:00,160
THIS IS A PAPER AND CONNIE WAS

1807
01:02:00,160 --> 01:02:02,320
PART OF THIS IN OUR PRE

1808
01:02:02,320 --> 01:02:04,760
CONFERENCE IN 2017, FOCUSED ON

1809
01:02:04,760 --> 01:02:06,920
MEASURING MEANINGFUL OUTCOMES.

1810
01:02:06,920 --> 01:02:11,120
THIS WAS A BROAD SCOPE

1811
01:02:11,120 --> 01:02:11,880
ACROSS-THE-BOARD NOT SPECIFIC TO

1812
01:02:11,880 --> 01:02:13,840
MINIMALLY VERBAL OR NON-SPEAKING

1813
01:02:13,840 --> 01:02:14,160
INDIVIDUALS.

1814
01:02:14,160 --> 01:02:15,800
WE HAD A DISCUSSION WITH OVER

1815
01:02:15,800 --> 01:02:17,680
200 DIFFERENT STEAK AND

1816
01:02:17,680 --> 01:02:19,920
SHAREHOLDERS, INCLUDING AUTISTIC

1817
01:02:19,920 --> 01:02:22,000
PEOPLE, CLINICIANS AND

1818
01:02:22,000 --> 01:02:23,000
RESEARCHERS.

1819
01:02:23,000 --> 01:02:24,200
THE THEMES THAT EMERGED ARE

1820
01:02:24,200 --> 01:02:25,280
THINGS WE REALLY TOUCHED ON IN

1821
01:02:25,280 --> 01:02:28,000
THE LAST COUPLE OF DAYS.

1822
01:02:28,000 --> 01:02:28,640
IN PARTICULAR I THINK THIS

1823
01:02:28,640 --> 01:02:29,520
HIGHLIGHTINGS THAT WE REALLY

1824
01:02:29,520 --> 01:02:31,640
NEED TO BROADEN THE SCOPE OF

1825
01:02:31,640 --> 01:02:33,720
WHAT WE ARE MEASURING AS

1826
01:02:33,720 --> 01:02:34,040
RESEARCHERS.

1827
01:02:34,040 --> 01:02:36,520
AND SO, AS WE ARE TALKING ABOUT

1828
01:02:36,520 --> 01:02:39,200
LANGUAGE INTERVENTIONS AND

1829
01:02:39,200 --> 01:02:40,680
THINKING ABOUT WHAT WE DEFINE AS

1830
01:02:40,680 --> 01:02:44,000
A MEANINGFUL OUTCOME FROM A

1831
01:02:44,000 --> 01:02:44,480
LANGUAGE INTERVENTION.

1832
01:02:44,480 --> 01:02:45,920
AND I WANT TO TAKE A STEP BACK

1833
01:02:45,920 --> 01:02:48,280
AND THINK ABOUT WHY DO WE REALLY

1834
01:02:48,280 --> 01:02:49,080
USE LANGUAGE?

1835
01:02:49,080 --> 01:02:51,120
AGAIN, I'M NOT A LANGUAGE

1836
01:02:51,120 --> 01:02:51,400
RESEARCHER.

1837
01:02:51,400 --> 01:02:52,280
I'M A LITTLE SELF CONSCIOUS

1838
01:02:52,280 --> 01:02:54,280
ABOUT MY CHOICE OF FUNCTION AND

1839
01:02:54,280 --> 01:02:56,000
HOW SOME OF THE AUDIENCE MEMBERS

1840
01:02:56,000 --> 01:02:58,400
DEFINE FUNCTIONAL COMMUNICATION.

1841
01:02:58,400 --> 01:03:03,000
BUT WHAT I MEAN BY THIS IS THAT

1842
01:03:03,000 --> 01:03:04,880
THERE IS A SPECIFIC -- LANGUAGE

1843
01:03:04,880 --> 01:03:06,040
IS DESIGNED TO ACCOMPLISH

1844
01:03:06,040 --> 01:03:06,680
SOMETHING SPECIFIC.

1845
01:03:06,680 --> 01:03:08,000
AND THIS CAN BE SORT OF

1846
01:03:08,000 --> 01:03:09,440
SEPARATED FROM THE LARGER

1847
01:03:09,440 --> 01:03:10,120
PURPOSE.

1848
01:03:10,120 --> 01:03:12,160
SO THERE IS LOTS OF FUNCTIONS

1849
01:03:12,160 --> 01:03:13,600
THAT WE TRY TO USE LANGUAGE FOR

1850
01:03:13,600 --> 01:03:15,720
BUT MUCH OF IT REALLY COMES DOWN

1851
01:03:15,720 --> 01:03:17,840
TO OUR OWN PERSONAL MOTIVATIONS,

1852
01:03:17,840 --> 01:03:19,720
WHICH I THINK SORT OF IN A

1853
01:03:19,720 --> 01:03:21,320
BIGGER PICTURE WAY MAP ON TO

1854
01:03:21,320 --> 01:03:23,800
EMOTIONAL HEALTH OR WELL-BEING,

1855
01:03:23,800 --> 01:03:26,600
OR PUT SIMPLY, WHAT MAKES US

1856
01:03:26,600 --> 01:03:26,800
HAPPY?

1857
01:03:26,800 --> 01:03:29,320
WHAT MAKES US SON TENT?

1858
01:03:29,320 --> 01:03:30,320
SO IF WE LOOK AT LANGUAGE

1859
01:03:30,320 --> 01:03:32,000
INTERVENTIONS OFTEN WE ARE

1860
01:03:32,000 --> 01:03:33,400
TARGETING THOSE FUNCTIONS.

1861
01:03:33,400 --> 01:03:37,680
SO AS A RESULT, OUTCOME MEASURES

1862
01:03:37,680 --> 01:03:38,560
FOCUS ON WHETHER OR NOT THE

1863
01:03:38,560 --> 01:03:39,880
INTERVENTION IS SUCCESSFUL AND

1864
01:03:39,880 --> 01:03:42,080
HELPING PEOPLE TO COMMUNICATE

1865
01:03:42,080 --> 01:03:43,120
FOR THAT PARTICULAR FUNCTION.

1866
01:03:43,120 --> 01:03:46,360
THERE IS A LOT OF EMPHASIS ON

1867
01:03:46,360 --> 01:03:47,360
OBJECTIVE NUMERIC OUTCOMES WITH

1868
01:03:47,360 --> 01:03:49,080
AN ASSUMPTION THAT MORE IS

1869
01:03:49,080 --> 01:03:49,320
BETTER.

1870
01:03:49,320 --> 01:03:50,600
THAT MAKES SENSE.

1871
01:03:50,600 --> 01:03:52,600
WE NEED THOSE SORTS OF METICS

1872
01:03:52,600 --> 01:03:53,720
AND THAT IS REALLY IMPORTANT.

1873
01:03:53,720 --> 01:03:54,880
BUT I THINK SOMETIMES WE RUN THE

1874
01:03:54,880 --> 01:03:57,360
RISK OF MISSING THAT BIGGER

1875
01:03:57,360 --> 01:03:57,800
PICTURE.

1876
01:03:57,800 --> 01:03:59,120
SO, WHICH IS WHETHER THE

1877
01:03:59,120 --> 01:04:00,840
COMMUNICATION IS SERVING THE

1878
01:04:00,840 --> 01:04:02,240
UNDERLYING PURPOSE.

1879
01:04:02,240 --> 01:04:04,080
SO THE EXAMPLES THAT GRANT AND

1880
01:04:04,080 --> 01:04:06,480
JORDYN GAVE US YESTERDAY,

1881
01:04:06,480 --> 01:04:08,320
HIGHLIGHTED HOW TONE OF THE

1882
01:04:08,320 --> 01:04:10,200
AUGMENTIVE COMMUNICATION DEVICE

1883
01:04:10,200 --> 01:04:11,520
DOESN'T NECESSARILY CAPTURE

1884
01:04:11,520 --> 01:04:13,520
THEIR COMMUNICATIVE INTENT.

1885
01:04:13,520 --> 01:04:17,880
WHAT IF YOU'RE TRYING TO GET

1886
01:04:17,880 --> 01:04:18,560
EMOTIONAL SUPPORT BUT YOUR

1887
01:04:18,560 --> 01:04:21,000
METHOD OF COMMUNICATING DOESN'T

1888
01:04:21,000 --> 01:04:22,840
CONVEY YOUR PERSONAL EXPERIENCE?

1889
01:04:22,840 --> 01:04:24,960
IS THE FUNCTION MEANINGFUL?

1890
01:04:24,960 --> 01:04:25,960
SO SOMEONE MADE REFERENCE

1891
01:04:25,960 --> 01:04:28,960
YESTERDAY TO MANY INTERVENTIONS

1892
01:04:28,960 --> 01:04:29,960
FOCUSING ON REQUESTING AND MORE

1893
01:04:29,960 --> 01:04:32,000
TO LIFE THAN COOKIES.

1894
01:04:32,000 --> 01:04:35,160
AND WADO WE HAVE IF YOU FOCUSED

1895
01:04:35,160 --> 01:04:37,440
ON HELPING SOMEONE TO REQUEST

1896
01:04:37,440 --> 01:04:38,200
SOMETHING SPECIFIC, AND THEN

1897
01:04:38,200 --> 01:04:39,440
THEY GET OLDER AND THEY CAN GET

1898
01:04:39,440 --> 01:04:40,320
THE COOKIES FOR THEMSELVES.

1899
01:04:40,320 --> 01:04:42,480
THEY CAN OPEN THAT BOX.

1900
01:04:42,480 --> 01:04:44,640
AND SO THEN IS THAT LANGUAGE AND

1901
01:04:44,640 --> 01:04:46,960
IS THAT SUPPORTED COMMUNICATION

1902
01:04:46,960 --> 01:04:48,320
STILL SERVING THAT FUNCTION?

1903
01:04:48,320 --> 01:04:51,040
AND THEN WE HAVE THE EXAMPLES

1904
01:04:51,040 --> 01:04:52,600
FROM DEN SPEC FROM AMY ABOUT THE

1905
01:04:52,600 --> 01:04:55,960
WAYS IN WHICH YOU CAN -- IT GOES

1906
01:04:55,960 --> 01:04:57,320
BEYOND THE NUMBER OF WORDS OR

1907
01:04:57,320 --> 01:05:02,520
THE NUMBER OF SIGNS YOU HAVE AND

1908
01:05:02,520 --> 01:05:04,000
REALLY DENISE'S SON WAS ABLE TO

1909
01:05:04,000 --> 01:05:07,560
FIGURE OUT HOW TO USE BREAD

1910
01:05:07,560 --> 01:05:09,320
STICKS AND THE BROAD REPERTOIRE

1911
01:05:09,320 --> 01:05:11,680
DIDN'T HAVE THE SPECIFIC WORD ON

1912
01:05:11,680 --> 01:05:12,280
THE DEVICE BUT HERE'S ABLE TO

1913
01:05:12,280 --> 01:05:14,640
FIGURE OUT HOW TO COMMUNICATE

1914
01:05:14,640 --> 01:05:15,920
WHAT IT WAS HE WANTED.

1915
01:05:15,920 --> 01:05:17,680
AMY MENTIONED HER SON USING A

1916
01:05:17,680 --> 01:05:19,160
SINGLE SIGN ACROSS A VARIETY OF

1917
01:05:19,160 --> 01:05:20,760
DIFFERENT FUNCTIONS.

1918
01:05:20,760 --> 01:05:22,320
SO MOVING BEYOND HOW MANY DO WE

1919
01:05:22,320 --> 01:05:23,680
HAVE, HOW OFTEN DO WE USE, BUT

1920
01:05:23,680 --> 01:05:25,520
DO YOU HAVE IT AT THE POINT THAT

1921
01:05:25,520 --> 01:05:28,920
YOU REALLY NEED TO COMMUNICATE

1922
01:05:28,920 --> 01:05:30,160
SOMETHING?

1923
01:05:30,160 --> 01:05:31,640
AND SO, I THINK I WANT TO BE

1924
01:05:31,640 --> 01:05:32,360
REALLY CLEAR.

1925
01:05:32,360 --> 01:05:33,680
I THINK LANGUAGE INTERVENTIONS

1926
01:05:33,680 --> 01:05:36,280
ARE INHERENT LIE SUPPORTING THE

1927
01:05:36,280 --> 01:05:37,040
BIGGER PICTURE.

1928
01:05:37,040 --> 01:05:38,800
THIS ISN'T LIKE A NOVEL IDEA

1929
01:05:38,800 --> 01:05:40,560
BEING ABLE TO EXPRESS OURSELVES

1930
01:05:40,560 --> 01:05:42,920
AND OUR NEEDS AND DESIRES, TO BE

1931
01:05:42,920 --> 01:05:43,840
ABLE TO CONNECT WITH PEOPLE, TO

1932
01:05:43,840 --> 01:05:46,320
BE ABLE TO REFUSE THOSE

1933
01:05:46,320 --> 01:05:46,640
CONNECTIONS.

1934
01:05:46,640 --> 01:05:48,160
THOSE ARE ALL IMPORTANT FACETS

1935
01:05:48,160 --> 01:05:50,760
TO QUALITY OF LIFE.

1936
01:05:50,760 --> 01:05:52,080
AND OBVIOUSLY MORE FLUENCY, MORE

1937
01:05:52,080 --> 01:05:53,760
WORDS, MORE MODALITIES CAN BE

1938
01:05:53,760 --> 01:05:56,680
REALLY VALUABLE TO ENSURE THAT

1939
01:05:56,680 --> 01:05:59,000
EVERYONE HAS ACCESS TO THAT.

1940
01:05:59,000 --> 01:06:01,120
BUT I THINK IF WE LISTEN TO THE

1941
01:06:01,120 --> 01:06:02,720
STAKEHOLDERS IN OUR ZOOM ROOM,

1942
01:06:02,720 --> 01:06:04,200
IF WE REALLY BELIEVE THAT THE

1943
01:06:04,200 --> 01:06:06,080
PURPOSE OF LANGUAGE IS REALLY TO

1944
01:06:06,080 --> 01:06:08,040
PROMOTE SOME FACET OF OUR

1945
01:06:08,040 --> 01:06:09,200
WELL-BEING, SHOULDN'T WE BE

1946
01:06:09,200 --> 01:06:11,920
MEASURING THAT AS AN EXPLICIT

1947
01:06:11,920 --> 01:06:13,160
OUTCOME, AS AN INDICATOR OF

1948
01:06:13,160 --> 01:06:14,760
SUCCESS IN OUR INTERVENTIONS

1949
01:06:14,760 --> 01:06:16,880
BROADLY BUT INCLUDING OUR

1950
01:06:16,880 --> 01:06:18,080
SPECIFIC LANGUAGE INTERVENTIONS?

1951
01:06:18,080 --> 01:06:19,600
AND IF WE THINK ABOUT THIS, HOW

1952
01:06:19,600 --> 01:06:22,200
DOES THE FOCUS ON EMOTION OR

1953
01:06:22,200 --> 01:06:23,480
WELL-BEING ACTUALLY EXPAND OUR

1954
01:06:23,480 --> 01:06:25,440
DEFINITIONS OF INTERVENTION

1955
01:06:25,440 --> 01:06:28,280
RESPONSE, WHAT WE DEFINE AS

1956
01:06:28,280 --> 01:06:29,960
SUCCESSFUL OUTCOME IN

1957
01:06:29,960 --> 01:06:30,560
INTERVENTION AND EVEN IN FORM

1958
01:06:30,560 --> 01:06:31,680
OUR DECISIONS REGARDING WHEN WE

1959
01:06:31,680 --> 01:06:35,280
MIGHT MOVE TO AN ADAPTIVE

1960
01:06:35,280 --> 01:06:35,520
DESIGN.

1961
01:06:35,520 --> 01:06:37,360
SO THINKING ABOUT, HOW EFFECTIVE

1962
01:06:37,360 --> 01:06:39,800
IS THE COMMUNICATION FOR THE

1963
01:06:39,800 --> 01:06:40,760
BROADER PURPOSE?

1964
01:06:40,760 --> 01:06:41,560
WHAT ABOUT THOSE INDIVIDUALS WHO

1965
01:06:41,560 --> 01:06:43,680
TALKED ABOUT THE BARRIERS TO

1966
01:06:43,680 --> 01:06:46,400
VARIOUS TYPES OF AAC DEVICES AND

1967
01:06:46,400 --> 01:06:47,800
WHAT ABOUT THE FLUENCY OR THE

1968
01:06:47,800 --> 01:06:49,040
COMFORT OR EASE WITH WHICH THEY

1969
01:06:49,040 --> 01:06:53,240
ARE ABLE TO USE THOSE TO

1970
01:06:53,240 --> 01:06:53,760
COMMUNICATE.

1971
01:06:53,760 --> 01:06:56,000
SOMETIMES RELATIVELY SIMPLE

1972
01:06:56,000 --> 01:06:57,440
NEEDS ARE OF THE UTMOST

1973
01:06:57,440 --> 01:06:58,400
IMPORTANCE TO THOSE INDIVIDUALS.

1974
01:06:58,400 --> 01:06:59,800
WE HAVEN'T TALKED TOO MUCH ABOUT

1975
01:06:59,800 --> 01:07:02,040
THE SATISFACTION OVERALL WITH

1976
01:07:02,040 --> 01:07:04,000
THE OUTCOME THEY ARE TRYING TO

1977
01:07:04,000 --> 01:07:06,360
ACHIEVE WITH THE INTERVENTION OR

1978
01:07:06,360 --> 01:07:06,720
THE MODALITY.

1979
01:07:06,720 --> 01:07:10,240
DO THEY WANT TO USE AN AAC

1980
01:07:10,240 --> 01:07:11,000
DEVICE?

1981
01:07:11,000 --> 01:07:13,000
IS SOMETHING LIKE GHOST YOURS

1982
01:07:13,000 --> 01:07:13,520
EASIER FOR THEM?

1983
01:07:13,520 --> 01:07:16,120
THERE WAS A LOT OF --

1984
01:07:16,120 --> 01:07:16,760
GESTURES -- DISCUSSION YESTERDAY

1985
01:07:16,760 --> 01:07:18,000
ABOUT INDUSTRY AND NOTHING MAKES

1986
01:07:18,000 --> 01:07:19,800
IT IN INDUSTRY UNLESS CUSTOMERS

1987
01:07:19,800 --> 01:07:21,000
ARE SATISFIED.

1988
01:07:21,000 --> 01:07:22,720
AND SO I THINK IF WE THINK OF IT

1989
01:07:22,720 --> 01:07:24,720
FROM THAT ANGLE, WHAT ARE WE

1990
01:07:24,720 --> 01:07:27,840
TRYING TO SERVE FOR THESE

1991
01:07:27,840 --> 01:07:28,080
PEOPLE?

1992
01:07:28,080 --> 01:07:29,520
SO LOOKING AT THE CLOCK,

1993
01:07:29,520 --> 01:07:31,000
EVERYONE IS SO GOOD ABOUT TIME.

1994
01:07:31,000 --> 01:07:32,960
I'M NEVER GOOD ABOUT TIME.

1995
01:07:32,960 --> 01:07:34,320
BUT MOVING FORWARD, THINKING

1996
01:07:34,320 --> 01:07:36,920
ABOUT HOW WE EXPAND THE SCOPE OF

1997
01:07:36,920 --> 01:07:37,880
OUTCOME MEASURES.

1998
01:07:37,880 --> 01:07:41,240
OBVIOUSLY WE HAVE TO DEFINE THIS

1999
01:07:41,240 --> 01:07:42,800
AND EMOTIONAL HEALTH AND

2000
01:07:42,800 --> 01:07:46,080
WELL-BEING IS A BIG THING.

2001
01:07:46,080 --> 01:07:48,040
CONCEPTUALIZING IT IN MULTIPLE

2002
01:07:48,040 --> 01:07:48,400
DIFFICULT WAYS.

2003
01:07:48,400 --> 01:07:50,200
I'M NOT HERE TO SUGGEST ONE WAY

2004
01:07:50,200 --> 01:07:51,160
OR THE OTHER.

2005
01:07:51,160 --> 01:07:53,360
WE MIGHT THINK ABOUT THIS WITH

2006
01:07:53,360 --> 01:07:53,960
RESPECT TO DIFFERENT CONTEXT.

2007
01:07:53,960 --> 01:07:55,440
WE CAN LOOK TO THE EMOTION

2008
01:07:55,440 --> 01:07:55,960
LITERATURE.

2009
01:07:55,960 --> 01:07:57,960
WE HAVE COLLEAGUES AT BERKLEY

2010
01:07:57,960 --> 01:07:59,360
WHO HAVE SPENT THEIR ENTIRE

2011
01:07:59,360 --> 01:08:02,840
CAREERS THINKING ABOUT HOW WE

2012
01:08:02,840 --> 01:08:03,560
DEFINE HAPPINESS.

2013
01:08:03,560 --> 01:08:05,960
IF WHY LOOK AT THOSE ACTUAL

2014
01:08:05,960 --> 01:08:06,560
DEFINITIONS, THEY MAP ON TO

2015
01:08:06,560 --> 01:08:08,480
MEASURES THAT WE REALLY HAVE

2016
01:08:08,480 --> 01:08:10,080
ALREADY AT OUR DISPOSAL.

2017
01:08:10,080 --> 01:08:12,280
SO THINGS LIKE THE PROMISE

2018
01:08:12,280 --> 01:08:14,280
AUTISM BATTERY HAS DIFFERENT

2019
01:08:14,280 --> 01:08:16,480
FACETS OF SUBJECTIVE WELL-BEING

2020
01:08:16,480 --> 01:08:17,920
AND EMOTIONAL DISTRESS.

2021
01:08:17,920 --> 01:08:20,560
IF WE LOOK TO THE SEVERE

2022
01:08:20,560 --> 01:08:22,560
PROFOUND INTELLECTUAL DISABILITY

2023
01:08:22,560 --> 01:08:23,800
LITERATURE, THERE IS NICE

2024
01:08:23,800 --> 01:08:26,080
REVIEWS ON HOW WE ASSESS MENTAL

2025
01:08:26,080 --> 01:08:27,760
HEALTH PROBLEMS AND DIFFERENT

2026
01:08:27,760 --> 01:08:29,880
FASELS OF WELL-BEING IN THAT

2027
01:08:29,880 --> 01:08:30,200
POPULATION.

2028
01:08:30,200 --> 01:08:33,000
AND THERE IS A FEW INSTRUMENTS

2029
01:08:33,000 --> 01:08:34,600
THAT YOU COULD ARGUE HAVE SOME

2030
01:08:34,600 --> 01:08:37,080
GOOD PSYCHOMELT RICK PROPERTIES.

2031
01:08:37,080 --> 01:08:38,680
CERTAINLY, WHILE THOSE WILL BE

2032
01:08:38,680 --> 01:08:41,480
MATCHED WITH RESPECT TOESS

2033
01:08:41,480 --> 01:08:42,040
EXPRESSIVE LANGUAGE, THIS

2034
01:08:42,040 --> 01:08:43,360
DOESN'T RECOGNIZE THAT SOME

2035
01:08:43,360 --> 01:08:44,800
PEOPLE HAVE DIFFERENCES IN

2036
01:08:44,800 --> 01:08:46,960
COGNITIVE ABILITIES BUT IT ALSO

2037
01:08:46,960 --> 01:08:48,920
DOESN'T NECESSARILY REFLECT THE

2038
01:08:48,920 --> 01:08:51,880
WAYS IN WHICH AUTISTIC PEOPLE,

2039
01:08:51,880 --> 01:08:53,560
MINIMALLY VERBAL OR NOT, MAY

2040
01:08:53,560 --> 01:08:55,000
MANIFEST OR EXPRESS THEIR

2041
01:08:55,000 --> 01:08:55,360
EMOTIONS.

2042
01:08:55,360 --> 01:08:58,000
SO I THINK WE REALLY HAVE TO

2043
01:08:58,000 --> 01:08:59,680
CONSIDER THAT PARTICULAR

2044
01:08:59,680 --> 01:09:00,120
SUBGROUP OF PEOPLE.

2045
01:09:00,120 --> 01:09:02,160
AND SO WE DON'T HAVE A LOT OF

2046
01:09:02,160 --> 01:09:03,720
EMOTIONAL WELL-BEING OR MENTAL

2047
01:09:03,720 --> 01:09:06,680
HEALTH MEASURES SPECIFICALLY

2048
01:09:06,680 --> 01:09:08,120
DESIGNED TO ASSESS THESE

2049
01:09:08,120 --> 01:09:11,920
CONSTRUCTS IN MINIMALLY VERBAL

2050
01:09:11,920 --> 01:09:12,480
AUTISTIC PEOPLE.

2051
01:09:12,480 --> 01:09:14,760
THE EMOTION DYSREGULATION

2052
01:09:14,760 --> 01:09:16,600
INTERVIEW OR INVENTORY HAS

2053
01:09:16,600 --> 01:09:17,880
INCLUDED SOME MINIMALLY VERBAL

2054
01:09:17,880 --> 01:09:20,040
PEOPLE AND THEY LOOKED AT

2055
01:09:20,040 --> 01:09:21,400
DIFFERENTIAL ITEM FUNCTIONING

2056
01:09:21,400 --> 01:09:23,360
BASED ON VERBAL ABILITIES THAT

2057
01:09:23,360 --> 01:09:24,760
WERE GOING IN THE RIGHT

2058
01:09:24,760 --> 01:09:25,040
DIRECTION.

2059
01:09:25,040 --> 01:09:26,240
AND ALL OF THESE PLACES ARE

2060
01:09:26,240 --> 01:09:28,080
GREAT TO START.

2061
01:09:28,080 --> 01:09:29,920
BUT I ALSO HAVE TO ACKNOWLEDGE,

2062
01:09:29,920 --> 01:09:31,360
THIS IS A REALLY BROAD CONCEPT.

2063
01:09:31,360 --> 01:09:33,280
DO WE REALLY THINK A LANGUAGE

2064
01:09:33,280 --> 01:09:34,680
INTERVENTION WILL CHANGE

2065
01:09:34,680 --> 01:09:36,560
SOMEONE'S FUNDAMENTAL SUBJECTIVE

2066
01:09:36,560 --> 01:09:37,080
WELL-BEING?

2067
01:09:37,080 --> 01:09:38,120
I THINK THAT'S THE GOAL.

2068
01:09:38,120 --> 01:09:38,920
THAT'S THE HOPE.

2069
01:09:38,920 --> 01:09:40,640
BUT CERTAINLY THAT IS A TALL

2070
01:09:40,640 --> 01:09:40,880
ORDER.

2071
01:09:40,880 --> 01:09:42,600
AND SO WE MIGHT ALSO NEED TO

2072
01:09:42,600 --> 01:09:44,960
THINK ABOUT HOW DO WE DEVELOP

2073
01:09:44,960 --> 01:09:46,680
ASSESSMENTS OR TOOLS OR

2074
01:09:46,680 --> 01:09:48,720
INSTRUMENTS OF EXPERIENCES THAT

2075
01:09:48,720 --> 01:09:50,320
ARE MORE CONFINED TO THE KINDS

2076
01:09:50,320 --> 01:09:53,360
OF CONTEXT AND SITUATIONS THAT

2077
01:09:53,360 --> 01:09:56,040
COMMUNICATION IS BEING FOCUSED

2078
01:09:56,040 --> 01:09:56,200
IN?

2079
01:09:56,200 --> 01:09:57,720
JUST A QUICK CAUTION AND

2080
01:09:57,720 --> 01:09:58,120
EXISTING MEASURES.

2081
01:09:58,120 --> 01:10:01,360
THIS IS A PUBLISHED STUDY.

2082
01:10:01,360 --> 01:10:02,520
BASICALLY THERE ARE INSTRUMENTS

2083
01:10:02,520 --> 01:10:04,200
OUT THERE, MANY OF WHICH WERE

2084
01:10:04,200 --> 01:10:06,240
NOT DESIGNED FOR USE WITH

2085
01:10:06,240 --> 01:10:07,720
INDIVIDUALS ACROSS THE LANGUAGE

2086
01:10:07,720 --> 01:10:08,000
RANGE.

2087
01:10:08,000 --> 01:10:09,640
AND THIS JUST SHOWS YOU THAT

2088
01:10:09,640 --> 01:10:11,600
INSTRUMENTS LIKE THE CHILD

2089
01:10:11,600 --> 01:10:13,320
BEHAVIOR CHECKLIST AND THE ADD

2090
01:10:13,320 --> 01:10:15,440
VERRANT BEHAVIOR CHECKLIST,

2091
01:10:15,440 --> 01:10:17,000
WHILE MEASURING SIMILAR

2092
01:10:17,000 --> 01:10:17,920
CONCEPTS, SHOWED DIFFERENT

2093
01:10:17,920 --> 01:10:19,480
PROFILES ACCORDING TO LANGUAGE

2094
01:10:19,480 --> 01:10:19,760
ABILITIES.

2095
01:10:19,760 --> 01:10:21,920
SO MINIMALLY VERBAL INDIVIDUALS

2096
01:10:21,920 --> 01:10:23,480
HERE SHOW LOW INTERNALIZING

2097
01:10:23,480 --> 01:10:25,040
SYMPTOMS WHEREAS HERE THEY ARE

2098
01:10:25,040 --> 01:10:27,200
QUITE HIGH IN LETHARGY WHICH YOU

2099
01:10:27,200 --> 01:10:28,840
MIGHT EXPECT TO BE MORE

2100
01:10:28,840 --> 01:10:29,160
COMPARABLE.

2101
01:10:29,160 --> 01:10:32,400
SO THERE ARE LOTS OF REASONS FOR

2102
01:10:32,400 --> 01:10:32,600
THIS.

2103
01:10:32,600 --> 01:10:34,400
ITEMS REQUIRE LANGUAGE AND MUCH

2104
01:10:34,400 --> 01:10:36,280
MORE REFLECTION ON INTERNAL

2105
01:10:36,280 --> 01:10:36,760
STATES.

2106
01:10:36,760 --> 01:10:38,000
AND THESE THINGS SEEM OBVIOUS

2107
01:10:38,000 --> 01:10:39,400
WHEN YOU LOOK TAT THAT WAY.

2108
01:10:39,400 --> 01:10:41,360
IT'S EASY TO OVERLOOK WHETHER WE

2109
01:10:41,360 --> 01:10:42,760
START TO TALK ABOUT LARGE

2110
01:10:42,760 --> 01:10:44,920
COLLABORATION AND SECONDARY DATA

2111
01:10:44,920 --> 01:10:46,160
ANALYSIS TO UNDERSTAND THIS

2112
01:10:46,160 --> 01:10:49,720
SUBGROUP OF PEOPLE.

2113
01:10:49,720 --> 01:10:51,480
I THINK THAT THERE IS A LOT OF

2114
01:10:51,480 --> 01:10:53,400
EXCITING THINGS THAT WE COULD DO

2115
01:10:53,400 --> 01:10:55,480
TO REALLY MOVE FORWARD IN TERMS

2116
01:10:55,480 --> 01:10:57,240
OF UNDERSTANDING MINIMALLY

2117
01:10:57,240 --> 01:10:59,280
VERBAL AND NON-SPEAKING PEOPLE.

2118
01:10:59,280 --> 01:11:01,880
I THINK THAT THIS GROUP IN

2119
01:11:01,880 --> 01:11:02,400
PARTICULAR WOULD BE REALLY

2120
01:11:02,400 --> 01:11:06,080
AMAZING TO THINK ABOUT HOW WE

2121
01:11:06,080 --> 01:11:08,040
PERCEIVE QUALITATIVE STUDIES TO

2122
01:11:08,040 --> 01:11:09,840
REALLY UNDERSTAND THE WAYS IN

2123
01:11:09,840 --> 01:11:11,520
WHICH MINIMALLY VERBAL OR

2124
01:11:11,520 --> 01:11:13,080
NON-SPEAKING PEOPLE ON THE

2125
01:11:13,080 --> 01:11:14,800
AUTISM SPECTRUM EXPRESS THEIR

2126
01:11:14,800 --> 01:11:15,040
EMOTIONS.

2127
01:11:15,040 --> 01:11:16,640
WHAT DO WHY MISS?

2128
01:11:16,640 --> 01:11:18,640
WHAT MIGHT OVERLAP WITH OTHER

2129
01:11:18,640 --> 01:11:18,920
INSTRUMENTS?

2130
01:11:18,920 --> 01:11:21,560
WE KNOW FROM SPEAKING

2131
01:11:21,560 --> 01:11:23,760
INDIVIDUALS STEMMING OFTEN IS

2132
01:11:23,760 --> 01:11:26,080
USED TO EXPRESS HAPPINESS AS

2133
01:11:26,080 --> 01:11:27,320
WELL AS FRUSTRATION OR EMOTION

2134
01:11:27,320 --> 01:11:28,960
REGULATION AND SO HOW DO WE USE

2135
01:11:28,960 --> 01:11:29,720
THAT INFORMATION?

2136
01:11:29,720 --> 01:11:31,520
IF WE TALK TO PARENTS OF THESE

2137
01:11:31,520 --> 01:11:32,920
MINIMALLY VERBAL AUTISTIC

2138
01:11:32,920 --> 01:11:35,320
PEOPLE, THEY WILL TELL US THAT

2139
01:11:35,320 --> 01:11:36,600
THEY KNOW WHEN THEIR SON OR

2140
01:11:36,600 --> 01:11:38,440
DAUGHTER OR LOVED ONE IS HAPPY

2141
01:11:38,440 --> 01:11:40,360
OR UPET AND SO HOW DO THEY KNOW?

2142
01:11:40,360 --> 01:11:42,160
AND SO THERE IS LOTS OF

2143
01:11:42,160 --> 01:11:43,680
DIFFERENT OBJECTIVE MEASURES AND

2144
01:11:43,680 --> 01:11:44,800
LOTS OF DIFFERENT THINGS WE CAN

2145
01:11:44,800 --> 01:11:46,760
USE TO INFORM OUTCOME

2146
01:11:46,760 --> 01:11:47,040
MEASUREMENT.

2147
01:11:47,040 --> 01:11:48,560
AND SO JUST A QUICK PLUG.

2148
01:11:48,560 --> 01:11:51,240
I KNOW WE ARE TALKING ABOUT

2149
01:11:51,240 --> 01:11:51,840
LANGUAGE INTERVENTIONS AND

2150
01:11:51,840 --> 01:11:52,080
OUTCOMES.

2151
01:11:52,080 --> 01:11:56,480
IF WE EXPAND RESEARCH TO FORK US

2152
01:11:56,480 --> 01:11:57,520
ON MENTAL HEALTH IN MINIMALLY

2153
01:11:57,520 --> 01:11:58,760
VERBAL AND NON-SPEAKING PEOPLE,

2154
01:11:58,760 --> 01:12:01,480
WE'LL DO A LOT TO FIGHT AGAINST

2155
01:12:01,480 --> 01:12:03,800
SOME OF THE ATTITUDES THAT

2156
01:12:03,800 --> 01:12:05,040
GIACOMO HIGHLIGHTED YESTERDAY.

2157
01:12:05,040 --> 01:12:07,160
SO WE NEED TO CHECK OUR OWN

2158
01:12:07,160 --> 01:12:09,680
ATTITUDES AND BIAS SYSTEM.

2159
01:12:09,680 --> 01:12:12,120
THOSE OF US OUT IN THE COMMUNITY

2160
01:12:12,120 --> 01:12:13,600
WITH RESPECT TO WHAT WE

2161
01:12:13,600 --> 01:12:15,320
PRIORITIZE FOR MINIMALLY VERBAL

2162
01:12:15,320 --> 01:12:16,400
AUTISTIC PEOPLE.

2163
01:12:16,400 --> 01:12:17,920
HOW WE VIEW MENTAL HEALTH AND

2164
01:12:17,920 --> 01:12:19,440
HOW WE PRIORITIZE THAT.

2165
01:12:19,440 --> 01:12:22,160
WE HAD A LOT OF GRANT REVIEWS

2166
01:12:22,160 --> 01:12:25,840
THAT REALLY QUESTION PARENTS

2167
01:12:25,840 --> 01:12:26,920
CAPABILITIES, OF REPORTING

2168
01:12:26,920 --> 01:12:29,800
INTERNAL STATES, SELF REPORTED

2169
01:12:29,800 --> 01:12:31,160
CAPABILITIES OF MINIMALLY VERBAL

2170
01:12:31,160 --> 01:12:31,480
PEOPLE.

2171
01:12:31,480 --> 01:12:32,320
THAT'S A REAL CHALLENGE WHEN YOU

2172
01:12:32,320 --> 01:12:34,880
CAN JUST SEE THE BIAS AND THE

2173
01:12:34,880 --> 01:12:36,320
STEREOTYPES THAT ARE COMING

2174
01:12:36,320 --> 01:12:38,040
THROUGH EVEN AT THE LEVEL OF

2175
01:12:38,040 --> 01:12:38,760
GRANT REVIEWS.

2176
01:12:38,760 --> 01:12:41,280
I HAVE A GRADUATE STUDENT I'LL

2177
01:12:41,280 --> 01:12:43,040
HIGHLIGHT QUICKLY WHO HAS

2178
01:12:43,040 --> 01:12:44,760
FUNDING FROM AUTISM SCIENCE

2179
01:12:44,760 --> 01:12:46,520
FOUNDATION TO LOOK AT EXISTING

2180
01:12:46,520 --> 01:12:47,800
MEASURES OF DEPRESSION AND ALSO

2181
01:12:47,800 --> 01:12:49,720
TO MOVE US FORWARD WITH SOME

2182
01:12:49,720 --> 01:12:50,600
QUALITATIVE RESEARCH TO

2183
01:12:50,600 --> 01:12:52,400
UNDERSTAND SOME OF THOSE

2184
01:12:52,400 --> 01:12:52,760
MANIFESTATIONS.

2185
01:12:52,760 --> 01:12:55,000
AND SO I'LL END BY SAYING,

2186
01:12:55,000 --> 01:12:58,040
LANGUAGE HAS A FUNCTION AND IT

2187
01:12:58,040 --> 01:12:58,440
HAS A PURPOSE.

2188
01:12:58,440 --> 01:13:00,200
REALLY MEASURING MEANINGFUL

2189
01:13:00,200 --> 01:13:01,400
OUTCOMES REALLY REQUIRES US TO

2190
01:13:01,400 --> 01:13:03,400
THINK ABOUT HOW WE WANT TO

2191
01:13:03,400 --> 01:13:04,880
CAPTURE PROGRESS WITH RESPECT TO

2192
01:13:04,880 --> 01:13:05,760
THAT LARGER PURPOSE.

2193
01:13:05,760 --> 01:13:07,640
AND THAT WE NEED TO MAKE SURE

2194
01:13:07,640 --> 01:13:09,960
THAT NOT ONLY WE DON'T HOWEVER

2195
01:13:09,960 --> 01:13:11,200
LOOK IT BUT WE HAVE TO TAKE A

2196
01:13:11,200 --> 01:13:14,040
MORE CAREFUL LOOK AT HOW TO

2197
01:13:14,040 --> 01:13:17,880
MEASURE THAT.

2198
01:13:17,880 --> 01:13:20,040
THANK YOU.

2199
01:13:20,040 --> 01:13:20,720
>>HELEN TAGER-FLUSBERG:
THANK

2200
01:13:20,720 --> 01:13:22,800
YOU VERY MUCH, VANESSA.

2201
01:13:22,800 --> 01:13:24,520
THAT WAS AN ENLIGHTENING TALK

2202
01:13:24,520 --> 01:13:26,400
FOR SOMEONE LIKE ME WHO FOCUSES

2203
01:13:26,400 --> 01:13:29,160
TOO NARROWLY ON THE LANGUAGE

2204
01:13:29,160 --> 01:13:31,600
OUTCOME PIECE AND NOT THE BIGGER

2205
01:13:31,600 --> 01:13:31,840
PICTURE.

2206
01:13:31,840 --> 01:13:34,640
AND THAT BIGGER PICTURE, I

2207
01:13:34,640 --> 01:13:39,640
THINK, IS CRITICAL FOR ALL THE

2208
01:13:39,640 --> 01:13:44,080
KEY STAKEHOLDERS THAT WE ARE

2209
01:13:44,080 --> 01:13:46,200
TRYING TO REPRESENT AND DISCUSS

2210
01:13:46,200 --> 01:13:46,440
HEREBY.

2211
01:13:46,440 --> 01:13:53,760
SO WE'LL TURN NOW TO OUR FRIEND,

2212
01:13:53,760 --> 01:13:54,440
FREDRICK SCHICK, WHO WILL TALKED

2213
01:13:54,440 --> 01:13:58,040
ABOUT EYE TRACKING MEASURES FOR

2214
01:13:58,040 --> 01:13:59,600
MINIMALLY VERBAL POPULATIONS.

2215
01:13:59,600 --> 01:14:01,360
I'M EXCITED TO HEAR THIS WORK.

2216
01:14:01,360 --> 01:14:02,880
A LOT OF TALK ALMS ABOUT THE

2217
01:14:02,880 --> 01:14:05,640
EXTENT TO WHICH WE CAN AND

2218
01:14:05,640 --> 01:14:08,760
SHOULD BE USING EYE TRACKING AS

2219
01:14:08,760 --> 01:14:11,680
AN IMPLICIT MEASURE FOR THIS

2220
01:14:11,680 --> 01:14:14,040
POPULATION.

2221
01:14:14,040 --> 01:14:14,480
SO, THANK YOU FRED.

2222
01:14:14,480 --> 01:14:24,960
>>FREDERICK SHIC: SORRY.

2223
01:14:33,960 --> 01:14:34,880
OKAY, ALL RIGHT.

2224
01:14:34,880 --> 01:14:39,160
SO I HAVE SOME DISCLOSURES.

2225
01:14:39,160 --> 01:14:40,480
CONSULTANT FOR JENSEN AND ROCHE

2226
01:14:40,480 --> 01:14:43,880
AND ALSO TAKE VANESSA'S QUEUE

2227
01:14:43,880 --> 01:14:45,400
AND ADMIT I'M A COMPUTER

2228
01:14:45,400 --> 01:14:47,000
SCIENTIST SO I REALLY DON'T KNOW

2229
01:14:47,000 --> 01:14:48,680
ANYTHING ABOUT ANYTHING.

2230
01:14:48,680 --> 01:14:50,680
NOT EACH ABOUT COMPUTERS WHICH

2231
01:14:50,680 --> 01:14:53,600
IS ACTUALLY KIND OF SURPRISING.

2232
01:14:53,600 --> 01:14:56,760
SO, WHEN WE TALK ABOUT EYE

2233
01:14:56,760 --> 01:14:58,560
TRACKING, IN STUDIES OF AUTISM,

2234
01:14:58,560 --> 01:15:01,520
TYPICALLY WE ARE TALKING ABOUT

2235
01:15:01,520 --> 01:15:03,200
SETUPS THAT LOOK LIKE THIS.

2236
01:15:03,200 --> 01:15:06,800
THIS IS A TRADITIONAL LAB-BASED

2237
01:15:06,800 --> 01:15:09,160
DESKTOP MOUNTED OCULAR GRAPHIC

2238
01:15:09,160 --> 01:15:09,880
DARK PUPIL EYE TRACKING SYSTEM.

2239
01:15:09,880 --> 01:15:12,320
YOU CAN TELL IT IS DARK PUPIL

2240
01:15:12,320 --> 01:15:13,880
BECAUSE OF THE WAYS THAT THE

2241
01:15:13,880 --> 01:15:16,080
CAMERA WOULD BE ALIGNED WITH THE

2242
01:15:16,080 --> 01:15:16,560
EYE.

2243
01:15:16,560 --> 01:15:17,600
BUT YOU WOULDN'T EVEN KNOW THIS

2244
01:15:17,600 --> 01:15:20,360
IS AN EYE TRACKER EXCEPT FOR THE

2245
01:15:20,360 --> 01:15:23,920
PRESENCE OF TWO SMALL RED DOTS

2246
01:15:23,920 --> 01:15:25,240
INDICATING THAT INFRARED

2247
01:15:25,240 --> 01:15:27,400
LIGHTING IS BEING USED TO GET A

2248
01:15:27,400 --> 01:15:28,440
CORNEA REFLECTION THAT WILL

2249
01:15:28,440 --> 01:15:31,120
ALLOW THE EYE TRACKER TO HAVE A

2250
01:15:31,120 --> 01:15:33,840
REFERENCE POINT FOR THE PUPIL.

2251
01:15:33,840 --> 01:15:35,080
SO THIS SOUNDS LIKE THE MAIN

2252
01:15:35,080 --> 01:15:37,040
TYPE OF SETUP AND MOST OF THE

2253
01:15:37,040 --> 01:15:39,200
STUDIES WHEN WE THINK ABOUT

2254
01:15:39,200 --> 01:15:41,040
STUDIES THAT IS HAVE INFORMED US

2255
01:15:41,040 --> 01:15:42,640
ABOUT MINIMALLY VERBAL

2256
01:15:42,640 --> 01:15:44,240
INDIVIDUALS WITH ASD COME FROM

2257
01:15:44,240 --> 01:15:46,160
STUDIES OF TODDLERS.

2258
01:15:46,160 --> 01:15:47,640
AND BY-AND-LARGE, I'M NOT GOING

2259
01:15:47,640 --> 01:15:48,800
TO TALK TOO MUCH ABOUT THIS.

2260
01:15:48,800 --> 01:15:50,480
I THINK THERE IS A WEALTH OF

2261
01:15:50,480 --> 01:15:52,880
INFORMATION WE KNOW ABOUT

2262
01:15:52,880 --> 01:15:54,200
TODDLERS NOW.

2263
01:15:54,200 --> 01:15:55,840
THE THING THAT IS REALLY

2264
01:15:55,840 --> 01:15:56,880
PROMISING IS THAT NOW WE ARE

2265
01:15:56,880 --> 01:15:58,600
STARTING TO SEE SOME STUDIES

2266
01:15:58,600 --> 01:16:01,120
THAT ARE LOOKING AT EYE TRACKING

2267
01:16:01,120 --> 01:16:02,000
SPECIFICALLY USED IN THE CONTEXT

2268
01:16:02,000 --> 01:16:04,080
OF TREATMENT, WHICH I THINK IS

2269
01:16:04,080 --> 01:16:06,240
ONE OF THOSE THINGS THAT IT

2270
01:16:06,240 --> 01:16:09,280
WON'T GET BETTER UNLESS WE

2271
01:16:09,280 --> 01:16:12,000
ACTUALLY USE THESE.

2272
01:16:12,000 --> 01:16:13,400
SO, OF COURSE WHEN WE ARE

2273
01:16:13,400 --> 01:16:14,600
TALKING ABOUT MINIMALLY VERBAL

2274
01:16:14,600 --> 01:16:16,440
TODDLERS AND THEN TALKING ABOUT

2275
01:16:16,440 --> 01:16:18,040
MINIMALLY VERBAL OLDER CHILDREN

2276
01:16:18,040 --> 01:16:21,040
WITH ASD, IT'S NOT THE SAME.

2277
01:16:21,040 --> 01:16:22,360
THE MISSING INGREDIENT,

2278
01:16:22,360 --> 01:16:29,000
DISPARITY OR THE DISCONNECT, IS

2279
01:16:29,000 --> 01:16:30,840
DEVELOPMENT.

2280
01:16:30,840 --> 01:16:32,960
THE DEVELOPMENT HAS A LOT OF

2281
01:16:32,960 --> 01:16:34,520
DIFFERENT COMPLEX ROLES THAT

2282
01:16:34,520 --> 01:16:35,520
AREN'T ALWAYS IMMEDIATELY

2283
01:16:35,520 --> 01:16:36,040
OBVIOUS.

2284
01:16:36,040 --> 01:16:42,160
SO THIS IS A STUDY LOOKING AT

2285
01:16:42,160 --> 01:16:44,320
CHILDHOOD DISORDER, ASSUMED

2286
01:16:44,320 --> 01:16:45,560
UNDER ASD5.

2287
01:16:45,560 --> 01:16:48,720
SO IN CDD, THESE CHILDREN

2288
01:16:48,720 --> 01:16:50,200
TYPICALLY SHOW RAPID  AND

2289
01:16:50,200 --> 01:16:51,200
SIGNIFICANT REGRESSION ABOUT 3

2290
01:16:51,200 --> 01:16:54,360
AND 4 YEARS OF AGE AND MOST OF

2291
01:16:54,360 --> 01:16:56,200
THEM AND AS MINIMALLY VERBAL,

2292
01:16:56,200 --> 01:16:59,120
MOST ARE IN THIS STUDY.

2293
01:16:59,120 --> 01:17:02,520
IN THIS PARTICULAR STUDY, THE

2294
01:17:02,520 --> 01:17:03,800
SCANNING PATTERNS OF THOSE

2295
01:17:03,800 --> 01:17:05,920
CHILDREN WHO HAVE CDD, ACTUALLY

2296
01:17:05,920 --> 01:17:08,320
LOOK A LOT MORE SIMILAR TO THE

2297
01:17:08,320 --> 01:17:10,440
SCANNING PATTERNS OF THE TIP

2298
01:17:10,440 --> 01:17:11,360
WOULD WOULD CALL DEVELOPING

2299
01:17:11,360 --> 01:17:11,640
CHILDREN.

2300
01:17:11,640 --> 01:17:13,600
WHEN YOU THINK ABOUT

2301
01:17:13,600 --> 01:17:14,240
DISTRIBUTION OF ATTENTION

2302
01:17:14,240 --> 01:17:15,880
BETWEEN THE EYES AND THE MOUTH.

2303
01:17:15,880 --> 01:17:17,440
THE GROUP THAT IS VERY DIFFERENT

2304
01:17:17,440 --> 01:17:20,000
FROM THE OTHERS ARE THOSE WHAT

2305
01:17:20,000 --> 01:17:22,000
WE MIGHT CONSIDER TO BE THE

2306
01:17:22,000 --> 01:17:23,920
VERBAL CHILDREN WITH ASD.

2307
01:17:23,920 --> 01:17:26,400
SUGGESTING THAT THIS MAY BE

2308
01:17:26,400 --> 01:17:29,400
ACTUALLY A DEVELOPMENTAL

2309
01:17:29,400 --> 01:17:29,880
COMPENSATORY MECHANISM.

2310
01:17:29,880 --> 01:17:31,400
THE ABSENCE OF WHICH MAY BE

2311
01:17:31,400 --> 01:17:33,560
REFLECTED IN THE CDD GROUP.

2312
01:17:33,560 --> 01:17:36,280
OF COURSE IT COULD BE ALL

2313
01:17:36,280 --> 01:17:40,400
RELATED TO OVERALL IQ LEVELS.

2314
01:17:40,400 --> 01:17:44,160
BUT IT IS ONE OF THE THINGS THAT

2315
01:17:44,160 --> 01:17:46,320
HIGHLIGHTS HOW INCLUSION OF

2316
01:17:46,320 --> 01:17:47,520
MINIMALLY VERBAL CHILDREN

2317
01:17:47,520 --> 01:17:48,600
ACTUALLY MAKES THE SCIENCE

2318
01:17:48,600 --> 01:17:50,600
BETTER BECAUSE IT ALLOWS US TO

2319
01:17:50,600 --> 01:17:53,320
EXPLORE AND LOOK AT AND THINK

2320
01:17:53,320 --> 01:17:56,040
ABOUT THOSE DEVELOPMENTAL

2321
01:17:56,040 --> 01:17:57,560
SYSTEMS THAT OTHERWISE MAY WORK

2322
01:17:57,560 --> 01:18:02,600
IN WAYS WE DON'T EXPECT.

2323
01:18:02,600 --> 01:18:04,560
THE OTHER PIECE IS THAT

2324
01:18:04,560 --> 01:18:06,040
OFTENTIMES WE ARE EXCLUDING

2325
01:18:06,040 --> 01:18:07,520
MINIMALLY VERBAL CHILDREN WITH

2326
01:18:07,520 --> 01:18:09,840
ASD FROM EYE TRACKING STUDIES,

2327
01:18:09,840 --> 01:18:12,960
WE ARE ALSO MISSING ALL OF THESE

2328
01:18:12,960 --> 01:18:15,720
OPPORTUNITIES TO REALLY BROADEN

2329
01:18:15,720 --> 01:18:16,160
THE SCIENCE.

2330
01:18:16,160 --> 01:18:17,880
AT THIS POINT, THERE IS SO MUCH

2331
01:18:17,880 --> 01:18:19,640
SCIENCE OUT THERE THAT IS IT

2332
01:18:19,640 --> 01:18:21,960
REALLY DOING A IT DISSERVICE NOT

2333
01:18:21,960 --> 01:18:23,360
JUST TO THE MINIMALLY VERBAL

2334
01:18:23,360 --> 01:18:24,920
CHILDREN WITH ASD BUT FOR ALL

2335
01:18:24,920 --> 01:18:26,400
CHILDREN WITH ASD BECAUSE WE ARE

2336
01:18:26,400 --> 01:18:28,160
NOT UNDERSTANDING THE FULL

2337
01:18:28,160 --> 01:18:28,400
PICTURES.

2338
01:18:28,400 --> 01:18:29,680
IF WE WANT TO GET THERE, THIS

2339
01:18:29,680 --> 01:18:30,920
BRINGS ME TO MY FIRST POINT.

2340
01:18:30,920 --> 01:18:32,560
ONE OF THE THICK WE SHOULD BE

2341
01:18:32,560 --> 01:18:34,440
DOING IS OMNI DIRECTIONAL

2342
01:18:34,440 --> 01:18:36,880
INCLUSION OF MINIMALLY VERBAL

2343
01:18:36,880 --> 01:18:39,040
CHILDREN WITH ASD INTO EYE

2344
01:18:39,040 --> 01:18:41,320
TRACKING STUDIES IN A

2345
01:18:41,320 --> 01:18:44,680
CHRONOLOGICAL AGE AND ALSO IN A

2346
01:18:44,680 --> 01:18:45,760
DEVELOPMENTAL AGE MESHED WAY.

2347
01:18:45,760 --> 01:18:48,120
WE SHOULD INCLUDE OLDER

2348
01:18:48,120 --> 01:18:49,840
MINIMALLY VERBAL CHILDREN WITH

2349
01:18:49,840 --> 01:18:51,160
ASD ALONGSIDE YOUNGER CHILDREN

2350
01:18:51,160 --> 01:18:54,760
WITH ASD.

2351
01:18:54,760 --> 01:18:56,480
THOSE LONGITUDINAL STUDIES ALLOW

2352
01:18:56,480 --> 01:18:59,840
US TO MAP THE EARLIER PRECURSORS

2353
01:18:59,840 --> 01:19:01,240
FOR LIKELY MEMBERSHIPPING TO

2354
01:19:01,240 --> 01:19:04,600
MINIMALLY VERBAL ASD GROUP AS

2355
01:19:04,600 --> 01:19:07,240
COMPARED TO NOT BECAUSE THAT

2356
01:19:07,240 --> 01:19:10,080
TELLS US ABOUT THEORETICALLY

2357
01:19:10,080 --> 01:19:11,800
IMPORTANT DEVELOPMENTAL

2358
01:19:11,800 --> 01:19:13,120
MECHANISMS AND ALSO PRACTICALLY

2359
01:19:13,120 --> 01:19:15,360
THINGS THAT MIGHT BE USEFUL FOR

2360
01:19:15,360 --> 01:19:17,000
TREATMENT PLANNING DOWN THE

2361
01:19:17,000 --> 01:19:17,280
LINE.

2362
01:19:17,280 --> 01:19:19,520
SO WHAT DO WE KNOW ABOUT

2363
01:19:19,520 --> 01:19:22,000
MINIMALLY VERBAL CHILDREN WITH

2364
01:19:22,000 --> 01:19:23,200
ASD RIGHT NOW?

2365
01:19:23,200 --> 01:19:25,480
I'M NOT GOING TO GOING INTO

2366
01:19:25,480 --> 01:19:26,560
DEPTH HERE BUT THERE IS A SMALL

2367
01:19:26,560 --> 01:19:29,760
NUMBER OF STUDIES USING EYE

2368
01:19:29,760 --> 01:19:30,000
TRACKING.

2369
01:19:30,000 --> 01:19:32,720
WORK BY THOMPSON AND COLLEAGUES,

2370
01:19:32,720 --> 01:19:37,560
PRELIMINARY WORK BY CAITLYN CUED

2371
01:19:37,560 --> 01:19:44,480
ACK AND OTHERS, AS WELL AS WORK

2372
01:19:44,480 --> 01:19:46,960
BY -- I BUTCHERED THAT NAME.

2373
01:19:46,960 --> 01:19:48,440
ARE HIGHLIGHTING ONE ASPECT THAT

2374
01:19:48,440 --> 01:19:50,600
SEEMS TO BE PRETTY COMMON ACROSS

2375
01:19:50,600 --> 01:19:52,760
THESE STUDIES WHICH IS THAT

2376
01:19:52,760 --> 01:19:56,040
THERE IS A PORTION OF THE

2377
01:19:56,040 --> 01:19:56,840
MINIMALLY VERBAL A SD GROUP WHO

2378
01:19:56,840 --> 01:19:59,560
ARE ESSENTIALLY LOSING DATA OR

2379
01:19:59,560 --> 01:20:01,000
ARE OFF TASK MORE THAN WOULD BE

2380
01:20:01,000 --> 01:20:01,360
EXPECTED.

2381
01:20:01,360 --> 01:20:04,920
AND THIS REALLY MAKES IT VERY

2382
01:20:04,920 --> 01:20:05,840
DIFFICULT TO I THINK INTERPRET

2383
01:20:05,840 --> 01:20:07,960
THESE EYE TRACKING MEASURES AS

2384
01:20:07,960 --> 01:20:09,280
THEY ARE DESIGNED.

2385
01:20:09,280 --> 01:20:11,920
SO THAT BRINGS ME TO THE SECOND

2386
01:20:11,920 --> 01:20:12,840
POINT WHICH IS THAT I THINK

2387
01:20:12,840 --> 01:20:14,280
ANOTHER PLACE THAT EYE TRACKING

2388
01:20:14,280 --> 01:20:18,320
STUDIES NEED TO GO IS WE NEED

2389
01:20:18,320 --> 01:20:20,280
NUANCED APPRECIATION OF LOST

2390
01:20:20,280 --> 01:20:22,480
DATA BECAUSE THEY IR NOT ON TASK

2391
01:20:22,480 --> 01:20:24,320
DOESN'T MEAN THEY ARE NOT DOING

2392
01:20:24,320 --> 01:20:24,680
ANYTHING.

2393
01:20:24,680 --> 01:20:27,120
EVEN IF THEY ARE -- YOUR EYES

2394
01:20:27,120 --> 01:20:28,200
ARE CLOSED, SOMETHING IS

2395
01:20:28,200 --> 01:20:28,520
HAPPENING.

2396
01:20:28,520 --> 01:20:30,560
AND THAT MEASUREMENT OF THOSE

2397
01:20:30,560 --> 01:20:31,920
PROCESSES CAN TELL US SOMETHING

2398
01:20:31,920 --> 01:20:33,440
SPECIFIC ABOUT WHAT IS HAPPENING

2399
01:20:33,440 --> 01:20:35,160
WITH THESE MINIMALLY VERBAL

2400
01:20:35,160 --> 01:20:35,560
CHILDREN.

2401
01:20:35,560 --> 01:20:37,320
SO HOW DO WE GET THERE?

2402
01:20:37,320 --> 01:20:40,400
ONE WAY IS THAT WE REALLY NEED A

2403
01:20:40,400 --> 01:20:41,560
MULTILEVEL QUANTIFICATION OF

2404
01:20:41,560 --> 01:20:46,280
LOST DATA AND ERROR.

2405
01:20:46,280 --> 01:20:48,640
WE KNOW THAT THESE SUPPOSED

2406
01:20:48,640 --> 01:20:51,280
QUALITY CONTROL VARIABLES ARE AS

2407
01:20:51,280 --> 01:20:53,280
ASSOCIATED WITH CLINICAL

2408
01:20:53,280 --> 01:20:56,120
PHENOTYPE IN ASD AS PRIMARY

2409
01:20:56,120 --> 01:20:58,520
VARIABLES ARE.

2410
01:20:58,520 --> 01:20:59,520
AND SO OF COURSE WE CAN VIEW

2411
01:20:59,520 --> 01:21:01,920
THIS AS A NUISANCE OR TURNING IT

2412
01:21:01,920 --> 01:21:02,680
ON ITS HEAD.

2413
01:21:02,680 --> 01:21:04,520
WE CAN VIEW THIS AS AN

2414
01:21:04,520 --> 01:21:06,880
OPPORTUNITY OF UNDERSTANDING A

2415
01:21:06,880 --> 01:21:09,400
LITTLE BIT MORE FULL EXPRESSION

2416
01:21:09,400 --> 01:21:11,320
OF AUTISM AS IT APPLIES TO

2417
01:21:11,320 --> 01:21:12,440
MINIMALLY VERBAL CHILDREN.

2418
01:21:12,440 --> 01:21:14,160
THE SECOND THING THAT WE SHOULD

2419
01:21:14,160 --> 01:21:18,840
BE DOING IN TERMS OF LOST DATA,

2420
01:21:18,840 --> 01:21:20,960
IS AUGMENTING OR EYE TRACKING

2421
01:21:20,960 --> 01:21:22,320
WITH ADDITIONAL TOOLS.

2422
01:21:22,320 --> 01:21:24,720
AND ONE PLACE THAT REALLY HAS A

2423
01:21:24,720 --> 01:21:28,000
LOT OF POTENTIAL IS THE USE OF

2424
01:21:28,000 --> 01:21:30,840
COMPUTATIONAL VISION TOOLS.

2425
01:21:30,840 --> 01:21:31,920
THEY HAVE MATURED

2426
01:21:31,920 --> 01:21:32,280
EXTRAORDINARILY.

2427
01:21:32,280 --> 01:21:33,440
THEY ARE NOT AT THE POINT WHERE

2428
01:21:33,440 --> 01:21:35,120
YOU CAN PULL IT OFF THE SHELF

2429
01:21:35,120 --> 01:21:37,000
AND INSTALL IT AND HOPE IT

2430
01:21:37,000 --> 01:21:38,800
WORKS, BUT IT IS ACTUALLY

2431
01:21:38,800 --> 01:21:40,760
GETTING TO THAT POINT.

2432
01:21:40,760 --> 01:21:42,720
DATA IN, RETRAIN THE DATA,

2433
01:21:42,720 --> 01:21:44,880
TRANSFER LEARNING, SOLVE THE

2434
01:21:44,880 --> 01:21:45,480
PARTICULAR PROBLEM YOU'RE

2435
01:21:45,480 --> 01:21:47,200
INTERESTED IN AND SOLVE IN AIR

2436
01:21:47,200 --> 01:21:47,840
QUOTES OF COURSE.

2437
01:21:47,840 --> 01:21:49,360
WE HAVE ALL THESE TRADITIONAL

2438
01:21:49,360 --> 01:21:52,440
EYE TRACKING MEASURES THAT HAVE

2439
01:21:52,440 --> 01:21:53,440
BEEN DISCUSSED IN THE LITERATURE

2440
01:21:53,440 --> 01:21:55,960
AND NOW WE ARE ADDING TO THIS

2441
01:21:55,960 --> 01:21:56,560
COMPUTER VISION.

2442
01:21:56,560 --> 01:21:57,880
SOME OF THE THINGS THAT COME

2443
01:21:57,880 --> 01:21:58,840
ALONG WITH COMPUTER VISION ARE

2444
01:21:58,840 --> 01:22:01,440
THE ABILITY TO THINK ABOUT

2445
01:22:01,440 --> 01:22:04,000
CHARACTERIZING THE FULL RANGE OF

2446
01:22:04,000 --> 01:22:06,880
ENGAGEMENT WITH TASK AND EYE

2447
01:22:06,880 --> 01:22:07,800
TRACKING MEASURES.

2448
01:22:07,800 --> 01:22:09,600
IT ALSO MEANS THAT WE CAN START

2449
01:22:09,600 --> 01:22:11,520
LOOKING AT ADDITIONAL THINGS

2450
01:22:11,520 --> 01:22:13,160
LIKE -- GOING BACK TO WHAT

2451
01:22:13,160 --> 01:22:14,320
VANESSA WAS TALKING ABOUT.

2452
01:22:14,320 --> 01:22:15,640
WE DON'T KNOW IF EXPRESSIONS ARE

2453
01:22:15,640 --> 01:22:18,000
VIEWED IN THE SAME WAY.

2454
01:22:18,000 --> 01:22:20,160
ONE THING THESE SYSTEMS CAN DO

2455
01:22:20,160 --> 01:22:22,800
IS QUANTIFY THE PRECURSORS WE

2456
01:22:22,800 --> 01:22:24,400
TYPICALLY CONSIDER AS FACIAL

2457
01:22:24,400 --> 01:22:26,480
EXPRESSION THAT IS CAN BE REALLY

2458
01:22:26,480 --> 01:22:26,720
USEFUL.

2459
01:22:26,720 --> 01:22:29,000
WE WON'T KNOW THE EXPRESSIONS

2460
01:22:29,000 --> 01:22:29,600
AREN'T THE SAME UNLESS WE ARE

2461
01:22:29,600 --> 01:22:30,480
MEASURING THEM.

2462
01:22:30,480 --> 01:22:32,000
AND ON TOP OF ALL OF THIS,

2463
01:22:32,000 --> 01:22:33,800
APPLYING OTHER TYPE OF

2464
01:22:33,800 --> 01:22:35,280
COMPLEMENTARY MODALITIES TO

2465
01:22:35,280 --> 01:22:38,960
UNDERSTAND THE FULL CONTEXT OF

2466
01:22:38,960 --> 01:22:43,360
WHAT EYE TRACKING IS TELLING US

2467
01:22:43,360 --> 01:22:44,760
ABOUT ABOUT LOOPING PATTERNS.

2468
01:22:44,760 --> 01:22:46,160
WE TALKED ABOUT A TON OF

2469
01:22:46,160 --> 01:22:47,480
VARIABLES AND THE ONLY WAY WE'LL

2470
01:22:47,480 --> 01:22:48,760
MAKE PROGRESS IN THAT IS BY

2471
01:22:48,760 --> 01:22:51,920
REALLY APPLYING COMPLEX MONDAY

2472
01:22:51,920 --> 01:22:53,800
LEARNING -- IT'S ONE OF THE WAYS

2473
01:22:53,800 --> 01:22:55,800
THAT THEY CAN SIMPLIFY OUR

2474
01:22:55,800 --> 01:22:58,440
ABILITY TO MAKE USE OF THIS

2475
01:22:58,440 --> 01:22:58,800
DATA.

2476
01:22:58,800 --> 01:23:01,400
BASICALLY UNDERSTANDING THE

2477
01:23:01,400 --> 01:23:02,000
COMMONALTIES BETWEEN ALL THESE

2478
01:23:02,000 --> 01:23:04,560
DIFFERENT TYPES OF MEASURINGS

2479
01:23:04,560 --> 01:23:05,640
INTO SOMETHING MORE USEABLE.

2480
01:23:05,640 --> 01:23:06,920
SO THINKING ABOUT SOME

2481
01:23:06,920 --> 01:23:07,600
ADDITIONAL THINGS.

2482
01:23:07,600 --> 01:23:09,440
I'M GOING TO GO THROUGH REALLY

2483
01:23:09,440 --> 01:23:10,120
FAST NOW.

2484
01:23:10,120 --> 01:23:11,640
COMPUTER VISION GIVES US THESE

2485
01:23:11,640 --> 01:23:12,920
TOOLS THAT ALLOW US TO TAKE THIS

2486
01:23:12,920 --> 01:23:16,000
OUT OF THE LABORATORY AND MOVE

2487
01:23:16,000 --> 01:23:16,960
IT INTO HANDHELD CONSUMER

2488
01:23:16,960 --> 01:23:17,160
DEVICES.

2489
01:23:17,160 --> 01:23:20,520
WE HAVE SEEN THIS ALREADY IN

2490
01:23:20,520 --> 01:23:22,880
TERMS OF FACIAL EXPRESSION,

2491
01:23:22,880 --> 01:23:23,760
QUANTIFICATION IN LARGE SAMPLES

2492
01:23:23,760 --> 01:23:26,720
IN TERMS OF EYE TRACKING ON AN

2493
01:23:26,720 --> 01:23:28,800
iPAD AND iPHONE.

2494
01:23:28,800 --> 01:23:32,840
AND THIS MAY GIVE US ALSO THIS

2495
01:23:32,840 --> 01:23:35,640
OTHER PIECE OF EXPANDING OUR

2496
01:23:35,640 --> 01:23:36,720
ABILITY TO REACH UNDERSERVED

2497
01:23:36,720 --> 01:23:37,040
POPULATIONS.

2498
01:23:37,040 --> 01:23:39,600
THE OTHER THING IT GIVES US IS

2499
01:23:39,600 --> 01:23:40,680
DEPTH AND ACCESS.

2500
01:23:40,680 --> 01:23:42,400
ONE OF THE THINGS THAT COMES OUT

2501
01:23:42,400 --> 01:23:45,200
OF THE RESEARCH IN LOOKING AT

2502
01:23:45,200 --> 01:23:46,720
EYE TRACKING AND LANGUAGE IS

2503
01:23:46,720 --> 01:23:50,080
THAT NOT ALL MEASURES WORK THE

2504
01:23:50,080 --> 01:23:51,560
SAME WAY IN INDIVIDUALS WHO ARE

2505
01:23:51,560 --> 01:23:54,760
MINIMALLY VERBAL WITH ASD.

2506
01:23:54,760 --> 01:23:56,800
ANOTHER THING, IF WE HAVE THESE

2507
01:23:56,800 --> 01:23:58,560
THINGS IN HAND, IF WE HAVE

2508
01:23:58,560 --> 01:23:59,520
ACCESSIBILITY AND ARE ABLE TO

2509
01:23:59,520 --> 01:24:01,320
GIVE THESE SYSTEMS OUT AND MAKE

2510
01:24:01,320 --> 01:24:03,520
THEM MORE READILY AVAILABLE,

2511
01:24:03,520 --> 01:24:08,920
THIS MEANS WE CAN USE THESE TO

2512
01:24:08,920 --> 01:24:10,360
UNDERSTAND -- AND USE FOR

2513
01:24:10,360 --> 01:24:11,880
SPECIFIC PURPOSES.

2514
01:24:11,880 --> 01:24:13,680
WORK SHOWED THAT CHILDREN WITH

2515
01:24:13,680 --> 01:24:18,440
ASD WHO WERE OPERATING IN THIS

2516
01:24:18,440 --> 01:24:22,720
SLIGHTLY CONTROVERSIAL STUDY

2517
01:24:22,720 --> 01:24:24,720
WHERE A FACILITATOR IS HOLDING A

2518
01:24:24,720 --> 01:24:25,640
SOUND BOARD FOR AN INDIVIDUAL

2519
01:24:25,640 --> 01:24:30,040
WITH ASD WHO IS TAPPING ON TO

2520
01:24:30,040 --> 01:24:33,160
THE TOUCH BOARD IN ORDER TO

2521
01:24:33,160 --> 01:24:33,360
WRITE.

2522
01:24:33,360 --> 01:24:35,320
IT SHOWED THAT THE EYE OF THE

2523
01:24:35,320 --> 01:24:37,000
INDIVIDUAL WITH AUTISM, THESE

2524
01:24:37,000 --> 01:24:39,440
ARE NON-SPEAKING INDIVIDUALS,

2525
01:24:39,440 --> 01:24:41,040
MOVES BEFORE THE FINGER PRESS

2526
01:24:41,040 --> 01:24:42,440
SUGGESTING THEY ARE INDEED THE

2527
01:24:42,440 --> 01:24:44,920
ONES DRIVING THIS COMMUNICATION.

2528
01:24:44,920 --> 01:24:48,000
THIS IS JUST A SIMPLE EXAMPLE OF

2529
01:24:48,000 --> 01:24:50,200
HOW WE COULD HOPEFULLY REMOVE

2530
01:24:50,200 --> 01:24:51,480
THE PERSON FROM THE LOOP.

2531
01:24:51,480 --> 01:24:55,680
THIS IS A SYSTEM TO LOOK AT

2532
01:24:55,680 --> 01:24:56,040
2002.

2533
01:24:56,040 --> 01:24:57,960
OVER TWO DECADES AGO.

2534
01:24:57,960 --> 01:24:59,800
THESE SYSTEMS FOR RAPID TYPING

2535
01:24:59,800 --> 01:25:01,200
WITH THE EYES, I THINK THEY SAID

2536
01:25:01,200 --> 01:25:04,080
IT GOES UP TO ABOUT 25 WORDS PER

2537
01:25:04,080 --> 01:25:04,320
MINUTED.

2538
01:25:04,320 --> 01:25:06,400
SO EXTREMELY RAPID.

2539
01:25:06,400 --> 01:25:07,000
OF COURSE THIS WOULD NOT WORK

2540
01:25:07,000 --> 01:25:08,200
FOR EVERY INDIVIDUAL WITH ASD

2541
01:25:08,200 --> 01:25:09,600
BUT IT MIGHT WORK FOR SOME.

2542
01:25:09,600 --> 01:25:11,320
THE REASON WHY I BRING THIS UP

2543
01:25:11,320 --> 01:25:13,640
IS BECAUSE THIS IS IN A NEW AGE

2544
01:25:13,640 --> 01:25:15,600
WHERE A NEW AGE OF GENITIVE AI

2545
01:25:15,600 --> 01:25:17,680
WHERE WE HAVE AI SYSTEMS TALKING

2546
01:25:17,680 --> 01:25:19,240
TO EACH OTHER MAKING FULL

2547
01:25:19,240 --> 01:25:20,880
PARAGRAPHS, BEING ABLE TO HAVE

2548
01:25:20,880 --> 01:25:21,880
CONVERSATIONS AND JUST A MATTER

2549
01:25:21,880 --> 01:25:24,320
OF TIME BEFORE WE TAKE SYSTEMS

2550
01:25:24,320 --> 01:25:25,400
LIKE THIS WHERE YOU TYPE WITH

2551
01:25:25,400 --> 01:25:26,680
YOUR EYES AND TURN THEM INTO

2552
01:25:26,680 --> 01:25:29,600
FULL CONVERSATIONS USING THESE

2553
01:25:29,600 --> 01:25:30,280
AI.

2554
01:25:30,280 --> 01:25:31,760
AND SO, OF COURSE WE DON'T HAVE

2555
01:25:31,760 --> 01:25:32,600
TO STOP THERE.

2556
01:25:32,600 --> 01:25:35,520
ALL OF THESE SYSTEMS,

2557
01:25:35,520 --> 01:25:36,920
MULTIMETHOD SYSTEMS, CAN BE

2558
01:25:36,920 --> 01:25:42,280
BRIDGED INTO THESE AI SYSTEMS TO

2559
01:25:42,280 --> 01:25:43,480
PROVIDE GREATER EXTENSIONS OF

2560
01:25:43,480 --> 01:25:46,440
THE INDIVIDUAL WITH AUTISM.

2561
01:25:46,440 --> 01:25:48,000
THE IDEA HERE IS THAT THESE

2562
01:25:48,000 --> 01:25:49,440
SYSTEMS WORK WELL.

2563
01:25:49,440 --> 01:25:51,480
THIS DASHER SYSTEM FOR EYE

2564
01:25:51,480 --> 01:25:53,920
TAPPING WORKS WELL BECAUSE IT

2565
01:25:53,920 --> 01:25:54,720
PREDICTS WHAT THE NEXT CHARACTER

2566
01:25:54,720 --> 01:25:55,000
SHOULD BE.

2567
01:25:55,000 --> 01:25:58,520
IN MANY WAYS WE CAN CONSIDER AI

2568
01:25:58,520 --> 01:26:01,560
THE NEXT STEP IN THAT PREDICTING

2569
01:26:01,560 --> 01:26:02,440
FURTHER WHAT THAT INDIVIDUAL

2570
01:26:02,440 --> 01:26:05,560
WITH ASD WOULD WANT TO SAY.

2571
01:26:05,560 --> 01:26:07,480
THERE IS THE SLIPPERY SLOPE HERE

2572
01:26:07,480 --> 01:26:10,400
WE CAN GET INTO IF IT'S OF

2573
01:26:10,400 --> 01:26:10,680
INTEREST.

2574
01:26:10,680 --> 01:26:11,920
THE LAST THING, OR NEXT TO THE

2575
01:26:11,920 --> 01:26:14,320
LAST THING, WE NEED MORE PRECISE

2576
01:26:14,320 --> 01:26:14,600
MEASURES.

2577
01:26:14,600 --> 01:26:15,440
NO WAY AROUND THIS.

2578
01:26:15,440 --> 01:26:16,960
IF WE WANT BETTER MEASURES OF

2579
01:26:16,960 --> 01:26:18,760
EYE TRACKING MEASURES OF

2580
01:26:18,760 --> 01:26:19,520
RECEPTIVE LANGUAGE SKILLS, WE

2581
01:26:19,520 --> 01:26:20,440
HAVE TO BUILD IT.

2582
01:26:20,440 --> 01:26:22,840
THIS IS ONE OF THE MOST

2583
01:26:22,840 --> 01:26:24,920
RIGULOUSLY DESIGNED MEASURES I

2584
01:26:24,920 --> 01:26:30,520
HAVE SEEN IN EYE TRACKING

2585
01:26:30,520 --> 01:26:31,280
PERIOD.

2586
01:26:31,280 --> 01:26:31,760
AND EVENLY HERE FOR THE

2587
01:26:31,760 --> 01:26:32,400
MINIMALLY VERBAL CHILDREN YOU

2588
01:26:32,400 --> 01:26:34,760
CAN SEE THERE IS A LOT OF

2589
01:26:34,760 --> 01:26:35,120
HETEROGENEITY.

2590
01:26:35,120 --> 01:26:35,760
THAT WE EXPECT.

2591
01:26:35,760 --> 01:26:38,560
NOT ALL MEASURES WILL WORK THE

2592
01:26:38,560 --> 01:26:42,160
SAME WAY GIVEN THE LARGE

2593
01:26:42,160 --> 01:26:43,440
EXPANSIVE DEVELOPMENTAL

2594
01:26:43,440 --> 01:26:44,960
HETEROGENEITY WE SEE IN

2595
01:26:44,960 --> 01:26:55,400
MINIMALLY VERBAL CHILDREN.

2596
01:26:56,240 --> 01:26:58,280
THIS IS WORK WE NEED TO DO.

2597
01:26:58,280 --> 01:26:59,200
WE ALSO NEED TO ADDRESS WHICH

2598
01:26:59,200 --> 01:27:01,080
TYPE OF TECHNOLOGY FOR WHOM SOME

2599
01:27:01,080 --> 01:27:02,760
ARE GOING TO RESPOND WELL TO

2600
01:27:02,760 --> 01:27:04,120
THESE SCREENS AND SOME WILL NEED

2601
01:27:04,120 --> 01:27:05,760
SOMETHING MORE TO PAY ATTENTION

2602
01:27:05,760 --> 01:27:06,480
TO THE SCREEN.

2603
01:27:06,480 --> 01:27:08,240
SOME WILL IN FACT NOT EVEN BE

2604
01:27:08,240 --> 01:27:09,200
ABLE TO PAY ATTENTION TO THE

2605
01:27:09,200 --> 01:27:13,000
SCREENS AND WILL NEED TO GO TO

2606
01:27:13,000 --> 01:27:18,040
PHYSICAL EMBODIED SYSTEMS LIKE

2607
01:27:18,040 --> 01:27:18,880
ROBOTS OR MECHANICAL AUTOMATION.

2608
01:27:18,880 --> 01:27:20,960
AND THIS ALL BASICALLY SUGGESTS

2609
01:27:20,960 --> 01:27:23,760
THAT WE NEED TO DEVELOP A

2610
01:27:23,760 --> 01:27:26,840
SCIENCE OF ADAPTING OUR TASKS TO

2611
01:27:26,840 --> 01:27:29,520
THE DIFFERENT PREFERENCES,

2612
01:27:29,520 --> 01:27:31,080
BIASES, ABILITIES OF MINIMALLY

2613
01:27:31,080 --> 01:27:33,680
VERBAL INDIVIDUALS WITH ASD IN

2614
01:27:33,680 --> 01:27:35,120
THE SAME WAY WE WOULD TRANSLATE

2615
01:27:35,120 --> 01:27:38,080
A STANDARD MEASURE INTO SPANISH,

2616
01:27:38,080 --> 01:27:39,520
WHICH WE THINK ABOUT TRANSLATING

2617
01:27:39,520 --> 01:27:40,800
THIS INTO DIFFERENT MODALITIES.

2618
01:27:40,800 --> 01:27:42,760
THE LAST PART IS THERE IS A

2619
01:27:42,760 --> 01:27:44,640
POSSIBILITY THAT WE CAN START

2620
01:27:44,640 --> 01:27:45,920
THINKING ABOUT INTERACTIVE EYE

2621
01:27:45,920 --> 01:27:47,640
TRACKING IN A WAY WE HAVE NEVER

2622
01:27:47,640 --> 01:27:48,760
THOUGHT OF BEFORE.

2623
01:27:48,760 --> 01:27:52,480
PREVIOUS WORK THAT WE HAVE DONE

2624
01:27:52,480 --> 01:27:53,800
SECRETARIES THAT INTERACTIVE EYE

2625
01:27:53,800 --> 01:27:56,840
TRACKING SYSTEMS CAN LEAD A

2626
01:27:56,840 --> 01:27:58,320
YOUNG CHILD WITH ASD INTO

2627
01:27:58,320 --> 01:28:00,560
LEARNING A NEW STRATEGY FOR

2628
01:28:00,560 --> 01:28:02,480
LOOKING AT SOCIAL INFORMATION IN

2629
01:28:02,480 --> 01:28:03,400
COMPLEX SOCIAL SCENES.

2630
01:28:03,400 --> 01:28:06,840
WHAT DO WE DO NOW WITH AI TO

2631
01:28:06,840 --> 01:28:09,400
GENERATE UNLIMITED NUMBERS OF

2632
01:28:09,400 --> 01:28:11,560
STIMULI ADAPTIVELY ON THE BASIS

2633
01:28:11,560 --> 01:28:13,200
OF DIFFERENT TYPES OF CRITERIA

2634
01:28:13,200 --> 01:28:14,240
IN ANY SITUATION YOU CAN IMAGINE

2635
01:28:14,240 --> 01:28:16,760
YOU CAN GENERATE NEW TYPES OF

2636
01:28:16,760 --> 01:28:17,000
IMAGES.

2637
01:28:17,000 --> 01:28:18,640
WHAT WOULD WE DO WITH THAT

2638
01:28:18,640 --> 01:28:20,160
POWER?

2639
01:28:20,160 --> 01:28:22,560
ALL OF THESE CLIP ART I HAVE PUT

2640
01:28:22,560 --> 01:28:24,480
INTO THIS PRESENTATION ARE

2641
01:28:24,480 --> 01:28:25,960
GENERATED BY AI.

2642
01:28:25,960 --> 01:28:26,560
NONE OF THE PEOPLE EXIST.

2643
01:28:26,560 --> 01:28:30,880
NONE OF THE OBJECTS, NONE OF

2644
01:28:30,880 --> 01:28:31,640
THESE EYE TRACK EARLS EXIST W

2645
01:28:31,640 --> 01:28:34,480
THIS TYPE OF TECHNOLOGY, YOU CAN

2646
01:28:34,480 --> 01:28:36,560
IMAGINE HOOKING UP INTO THE

2647
01:28:36,560 --> 01:28:38,280
CREATION, OPTIMIZATION OF PORTO

2648
01:28:38,280 --> 01:28:42,560
COLS, SYSTEMS THAT CAN ADAPT

2649
01:28:42,560 --> 01:28:44,560
REFINE BOTH HOW TO COLLECT DATA

2650
01:28:44,560 --> 01:28:46,760
AND WHAT TYPE OF DATA WE ARE

2651
01:28:46,760 --> 01:28:48,640
COLLECTING FROM MINIMALLY VERBAL

2652
01:28:48,640 --> 01:28:50,360
CHILDREN TO MAKE BETTER

2653
01:28:50,360 --> 01:28:50,960
PREDICTIONS TOWARDS SOME

2654
01:28:50,960 --> 01:28:52,720
SPECIFIC OUTCOMES WE CHOOSE.

2655
01:28:52,720 --> 01:28:54,560
THE LAST THING I WILL SAY IS

2656
01:28:54,560 --> 01:28:55,680
THAT THIS IS SOMETHING THAT I

2657
01:28:55,680 --> 01:28:58,280
SEE ALMOST EVERY DAY, WHICH IS

2658
01:28:58,280 --> 01:29:00,520
THE -- IF YOU LOOK AT THIS, WHAT

2659
01:29:00,520 --> 01:29:03,520
I SEE, I SEE A DRUNKEN OCTOPUS.

2660
01:29:03,520 --> 01:29:05,480
I SEE IT EVERY DAY.

2661
01:29:05,480 --> 01:29:06,600
MAYBE YOU SEE IT ALSO.

2662
01:29:06,600 --> 01:29:08,600
AND MAYBE YOU WANT TO FIGHT IT

2663
01:29:08,600 --> 01:29:10,360
BECAUSE IT LOOKS LIKE IT WANTS

2664
01:29:10,360 --> 01:29:10,960
TO BOX.

2665
01:29:10,960 --> 01:29:12,720
BUT CLEARLY, I'M JUST MAKING

2666
01:29:12,720 --> 01:29:13,480
THAT UP.

2667
01:29:13,480 --> 01:29:16,120
LIKE I SAW THAT AND IT'S STUCK

2668
01:29:16,120 --> 01:29:17,800
IN MY HEAD AND IT'S -- THE MORE

2669
01:29:17,800 --> 01:29:20,200
I THINK ABOUT IT, ALL THESE

2670
01:29:20,200 --> 01:29:21,200
SOCIAL GREGS AND SOCIAL

2671
01:29:21,200 --> 01:29:23,600
CONVENTIONS WE HAVE,

2672
01:29:23,600 --> 01:29:24,160
COMMUNICATION, OUR LANGUAGE,

2673
01:29:24,160 --> 01:29:26,040
THESE ARE THINGS THAT ARE

2674
01:29:26,040 --> 01:29:27,960
SYSTEMS THAT WE HAVE UNIVERSALLY

2675
01:29:27,960 --> 01:29:30,520
DECIDED TO DILUTE OURSELVES INTO

2676
01:29:30,520 --> 01:29:32,360
BELIEVING ARE COMMON AND

2677
01:29:32,360 --> 01:29:36,760
UNIVERSAL WHEN THEY ARE NOT.

2678
01:29:36,760 --> 01:29:41,640
AND SO, I WOULD SIGH THAT WE

2679
01:29:41,640 --> 01:29:43,720
HAVE TO BE CAREFUL IN OUR

2680
01:29:43,720 --> 01:29:46,680
STUDIES OF EYE TRACKING AND

2681
01:29:46,680 --> 01:29:47,880
DEFINING OUTCOME MEASURES IN

2682
01:29:47,880 --> 01:29:48,720
ASSUMING WHAT IS CORRECT AND

2683
01:29:48,720 --> 01:29:52,160
GOOD WITH THE RECOGNITION THAT

2684
01:29:52,160 --> 01:29:56,440
LIKE THIS DRUNK OCTOPUS IS JUST

2685
01:29:56,440 --> 01:29:57,240
A FABRICATION.

2686
01:29:57,240 --> 01:29:58,880
IF AI CAN LEARN THIS LANGUAGE OF

2687
01:29:58,880 --> 01:30:01,960
SPOKEN WORD FOR NEUROTIP CALLS,

2688
01:30:01,960 --> 01:30:04,480
MY HOPE IS THAT WE CAN ALSO

2689
01:30:04,480 --> 01:30:06,160
APPLY THAT SAME TYPE OF

2690
01:30:06,160 --> 01:30:07,960
TECHNOLOGY TOW LEARN THE

2691
01:30:07,960 --> 01:30:08,720
INDIVIDUAL LANGUAGE OF PEOPLE

2692
01:30:08,720 --> 01:30:12,280
WITH ASD, ONE THAT INCLUDES THE

2693
01:30:12,280 --> 01:30:15,080
REPRESENTATION IN SOME TYPE OF

2694
01:30:15,080 --> 01:30:16,240
COLLECTIVE COMPROMISE.

2695
01:30:16,240 --> 01:30:18,760
AND SO, THANK YOU.

2696
01:30:18,760 --> 01:30:18,960
SORRY.

2697
01:30:18,960 --> 01:30:21,680
I'M SO OVER.

2698
01:30:21,680 --> 01:30:22,320
>>HELEN TAGER-FLUSBERG:
THANK

2699
01:30:22,320 --> 01:30:25,040
YOU VERY MUCH, FRED.

2700
01:30:25,040 --> 01:30:28,200
THERE WAS AN AWFUL LOT FOR YOU

2701
01:30:28,200 --> 01:30:28,920
TO PRESENT AND EVEN MORE FOR THE

2702
01:30:28,920 --> 01:30:32,000
REST OF US TO TRY TO TAKE IN.

2703
01:30:32,000 --> 01:30:34,960
BUT WE REALLY -- IT'S AMAZING TO

2704
01:30:34,960 --> 01:30:36,360
SEE WHAT IS HAPPENING IN THE

2705
01:30:36,360 --> 01:30:41,240
WORLD OF EYE TRACKING.

2706
01:30:41,240 --> 01:30:44,000
WE ARE GOING TO TURN TO A

2707
01:30:44,000 --> 01:30:45,200
PRESENTATION TO NANCY GRADY.

2708
01:30:45,200 --> 01:30:46,480
UNFORTUNATELY SHE IS NOT ABLE TO

2709
01:30:46,480 --> 01:30:48,080
JOIN US IN PERSON THIS

2710
01:30:48,080 --> 01:30:48,520
AFTERNOON.

2711
01:30:48,520 --> 01:30:51,720
BUT SHE HAS PREPARED HER

2712
01:30:51,720 --> 01:30:52,640
REMARKS.

2713
01:30:52,640 --> 01:30:54,560
JUDITH, I THINK YOU'RE GOING TO

2714
01:30:54,560 --> 01:31:04,920
BE PRESENTING THAT?

2715
01:31:06,400 --> 01:31:16,680
[ BACKGROUND NOISE ]

2716
01:31:22,640 --> 01:31:24,600
>>CONNIE KASARI: JUDITH,
ARE

2717
01:31:24,600 --> 01:31:26,880
YOU TRYING TO -- YOU NEED TO

2718
01:31:26,880 --> 01:31:28,120
SHARE YOUR SCREEN.

2719
01:31:28,120 --> 01:31:30,920
>>DR. COOPER DO YOU HAVE
A

2720
01:31:30,920 --> 01:31:31,760
VIDEO?

2721
01:31:31,760 --> 01:31:33,480
>>JUDITH COOPER: YES, ARE
YOU

2722
01:31:33,480 --> 01:31:35,120
NOT SEEING THIS?

2723
01:31:35,120 --> 01:31:37,800
HOLD ON JUST A MINUTE.

2724
01:31:37,800 --> 01:31:38,840
>>SHE'LL BE HERE IN TWO
SECOND

2725
01:31:38,840 --> 01:31:40,280
IF YOU NEED HER.

2726
01:31:40,280 --> 01:31:41,640
>>JUDITH COOPER: I KNOW
WHAT I

2727
01:31:41,640 --> 01:31:42,320
DID WRONG.

2728
01:31:42,320 --> 01:31:49,400
I JUST HAVE TO GET OUT OF THIS.

2729
01:31:49,400 --> 01:31:51,200
>>CONNIE KASARI: IT'S
CLEAR WE

2730
01:31:51,200 --> 01:31:54,800
NEED IMPROVED TECHNOLOGY.

2731
01:31:54,800 --> 01:31:57,040
>>JUDITH COOPER: STOP,
STOP.

2732
01:31:57,040 --> 01:32:00,400
I'M TRYING TO SHARE SCREEN.

2733
01:32:00,400 --> 01:32:02,200
HERE WE GO.

2734
01:32:02,200 --> 01:32:03,280
>>THERE YOU GO.

2735
01:32:03,280 --> 01:32:06,400
>>JUDITH COOPER: ALL
RIGHT.

2736
01:32:06,400 --> 01:32:06,800
>>SHARE SOUND.

2737
01:32:06,800 --> 01:32:08,680
>>JUDITH COOPER: OKAY,
I'M

2738
01:32:08,680 --> 01:32:19,160
HOPING IT IS ALREADY SHARED.

2739
01:32:25,200 --> 01:32:27,320
>>I'M NANCY GRADY AND WE
ARE

2740
01:32:27,320 --> 01:32:30,240
TALKING ABOUT SOCIAL CUES IN

2741
01:32:30,240 --> 01:32:34,680
AUTISTIC CHILDREN WITH MINIMAL

2742
01:32:34,680 --> 01:32:36,760
SPEECH.

2743
01:32:36,760 --> 01:32:38,560
LET'S STEP BACK AND --

2744
01:32:38,560 --> 01:32:41,320
[ INAUDIBLE ]

2745
01:32:41,320 --> 01:32:44,760
SO ALL OF --

2746
01:32:44,760 --> 01:32:52,520
[ DISTORTED VIDEO ]

2747
01:32:52,520 --> 01:33:02,840
[ DISTORTED SOUND ]

2748
01:33:27,160 --> 01:33:37,440
[ DISTORTED SOUND ]

2749
01:35:33,080 --> 01:35:34,720
STANDARDIZED MEASURES OF

2750
01:35:34,720 --> 01:35:40,600
COMMUNICATION ARE HELPFUL TO US.

2751
01:35:40,600 --> 01:35:45,680
STANDARDIZED MEASURES THAT ARE

2752
01:35:45,680 --> 01:35:50,800
DERIVED --

2753
01:35:50,800 --> 01:36:01,120
[ DISTORTED AUDIO ]

2754
01:39:47,960 --> 01:39:51,280
>>HELEN TAGER-FLUSBERG: I
THINK

2755
01:39:51,280 --> 01:39:54,160
IT WAS DIFFICULT FOR SOME OF US

2756
01:39:54,160 --> 01:39:57,600
TO HEAR EVERYTHING, NANCY WAS

2757
01:39:57,600 --> 01:40:00,760
SAYING AND THE SLIDES SEEMED A

2758
01:40:00,760 --> 01:40:03,120
LITTLE BIT SMALL; BUT WE HOPE

2759
01:40:03,120 --> 01:40:04,800
THAT PERHAPS THROUGH THE EDITING

2760
01:40:04,800 --> 01:40:06,680
WHEN WE DISSEMINATE THE WEBINAR,

2761
01:40:06,680 --> 01:40:11,480
WE'LL BE ABLE TO CAPTURE MORE OF

2762
01:40:11,480 --> 01:40:14,520
WHAT NANCY WAS PRESENTING ON THE

2763
01:40:14,520 --> 01:40:17,800
CRUCIAL OUTCOMES OF SOCIAL

2764
01:40:17,800 --> 01:40:18,280
COMMUNICATION.

2765
01:40:18,280 --> 01:40:19,720
AND LIKE OUR OTHER SPEAKERS, PUT

2766
01:40:19,720 --> 01:40:21,760
THAT IN A BROADER PERSPECTIVE.

2767
01:40:21,760 --> 01:40:24,120
WE ARE GOING TO TURN NOW TO

2768
01:40:24,120 --> 01:40:28,520
COMMENTARY ON THIS FROM LEONARD

2769
01:40:28,520 --> 01:40:30,320
ABBEDUTO.

2770
01:40:30,320 --> 01:40:30,960
LEN, PLEASE GO AHEAD.

2771
01:40:30,960 --> 01:40:32,200
>>LEONARD ABBEDUTO: I'M
NOT

2772
01:40:32,200 --> 01:40:35,360
GOING TO USE ANY SLIDES SINCE IT

2773
01:40:35,360 --> 01:40:37,040
ALMOST ALWAYS DOESN'T WORK FOR

2774
01:40:37,040 --> 01:40:40,520
ME WITH TECHNOLOGY.

2775
01:40:40,520 --> 01:40:42,800
SO, FIRST OF ALL THESE WERE FOUR

2776
01:40:42,800 --> 01:40:44,800
GREAT PRESENTATIONS AND I

2777
01:40:44,800 --> 01:40:46,120
PROBABLY SHOULD JUST START BY

2778
01:40:46,120 --> 01:40:46,760
SAYING, WOW.

2779
01:40:46,760 --> 01:40:48,000
BUT I WON'T.

2780
01:40:48,000 --> 01:40:51,120
I'LL DO A LITTLE MORE

2781
01:40:51,120 --> 01:40:51,440
COMMENTARY.

2782
01:40:51,440 --> 01:40:53,080
SO THE FIRST THING I SHOULD SAY

2783
01:40:53,080 --> 01:40:54,680
IS THAT THERE REALLY IS NO

2784
01:40:54,680 --> 01:40:56,520
PERFECT OUTCOME MEASURE AND I

2785
01:40:56,520 --> 01:40:58,520
THINK EVERYTHING HAS STRENGTHS

2786
01:40:58,520 --> 01:40:58,920
AND LIMITATIONS.

2787
01:40:58,920 --> 01:41:00,640
SO, SOME OF US WE HAVE

2788
01:41:00,640 --> 01:41:02,760
PARTICULAR BIASES OF MEASURES WE

2789
01:41:02,760 --> 01:41:04,320
ARE COMFORTABLE WITH AND SO I'LL

2790
01:41:04,320 --> 01:41:07,000
TAKE THAT INTO ACCOUNT WITH MY

2791
01:41:07,000 --> 01:41:07,280
COMMENTS.

2792
01:41:07,280 --> 01:41:09,320
I WANTED TO COMMENT A LITTLE BIT

2793
01:41:09,320 --> 01:41:12,400
ON VANESSA'S WONDERFUL

2794
01:41:12,400 --> 01:41:12,800
PRESENTATION.

2795
01:41:12,800 --> 01:41:14,760
VANESSA WAS A LITTLE BIT

2796
01:41:14,760 --> 01:41:16,040
APOLOGETIC ABOUT NOT FOCUSING ON

2797
01:41:16,040 --> 01:41:18,200
LANGUAGE BUT I THINK THAT WAS

2798
01:41:18,200 --> 01:41:20,080
REALLY A WONDERFUL -- BECAUSE

2799
01:41:20,080 --> 01:41:22,840
OFTENTIMES WHEN WE WRITE OUR

2800
01:41:22,840 --> 01:41:24,040
PUBLICATIONS ON LANGUAGE, WE'LL

2801
01:41:24,040 --> 01:41:25,480
SAY, AND THIS IS IMPORTANT

2802
01:41:25,480 --> 01:41:27,440
BECAUSE IT IMPACTS HOW YOU

2803
01:41:27,440 --> 01:41:27,720
LEARN.

2804
01:41:27,720 --> 01:41:28,760
HOW YOU'RE INCLUDED IN THE WORLD

2805
01:41:28,760 --> 01:41:30,680
AND HOW HAPPY YOU ARE AND ALL OF

2806
01:41:30,680 --> 01:41:32,160
THESE OTHER MEASURES.

2807
01:41:32,160 --> 01:41:35,680
I THINK THE IDEA THAT WE NEED TO

2808
01:41:35,680 --> 01:41:37,920
BEGIN TO TIE LANGUAGE OUTCOME

2809
01:41:37,920 --> 01:41:39,280
MEASURES TO THESE BROADER

2810
01:41:39,280 --> 01:41:40,440
FUNCTIONAL OUTCOME MEASURES IN

2811
01:41:40,440 --> 01:41:43,800
OTHER DOMAINS IS REALLY

2812
01:41:43,800 --> 01:41:44,080
CRITICAL.

2813
01:41:44,080 --> 01:41:45,400
WE JUST PUBLISHED SOMETHING

2814
01:41:45,400 --> 01:41:46,920
RECENTLY IN A DIFFERENT CONTEXT,

2815
01:41:46,920 --> 01:41:49,320
ON INDIVIDUALS WITH FRAGILE X

2816
01:41:49,320 --> 01:41:50,400
SHOWING SOME OF OUR LANGUAGE

2817
01:41:50,400 --> 01:41:52,240
OUTCOME MEASURES ARE TIED TO

2818
01:41:52,240 --> 01:41:55,320
LEVELS OF ADAPTIVE BEHAVIOR AND

2819
01:41:55,320 --> 01:41:57,480
THE CAPACITY FOR SELF

2820
01:41:57,480 --> 01:41:57,840
DETERMINATION.

2821
01:41:57,840 --> 01:41:59,080
AND I THINK THOSE ARE THE

2822
01:41:59,080 --> 01:42:01,880
MEASURES THAT REALLY WILL HELP

2823
01:42:01,880 --> 01:42:03,080
US ARGUE THAT INTERVENTIONS ARE

2824
01:42:03,080 --> 01:42:04,360
HAVING A BIG IMPACT.

2825
01:42:04,360 --> 01:42:05,840
SO I THINK IT IS REALLY

2826
01:42:05,840 --> 01:42:06,120
CRITICAL.

2827
01:42:06,120 --> 01:42:08,720
THE OTHER THING IS I THINK THAT

2828
01:42:08,720 --> 01:42:10,600
ISSUES OF BEHAVIORAL HEALTH AND

2829
01:42:10,600 --> 01:42:12,160
EMOTIONAL WELL-BEING, THOSE ARE

2830
01:42:12,160 --> 01:42:15,360
FACTORS THAT WILL MODERATE THE

2831
01:42:15,360 --> 01:42:16,160
EFFECTS OF ANYTHING INTERVENTION

2832
01:42:16,160 --> 01:42:18,120
ON LEARNING OUTCOMES.

2833
01:42:18,120 --> 01:42:20,600
IF ONE IS NOT ENGAGED, IF ONE IS

2834
01:42:20,600 --> 01:42:22,880
UNHAPPY, IF ONE IS SOCIALLY

2835
01:42:22,880 --> 01:42:24,160
ANXIOUS, ALL OF THOSE THINGS

2836
01:42:24,160 --> 01:42:26,640
WILL LIMIT INTERVENTIONS.

2837
01:42:26,640 --> 01:42:28,360
SO I THINK HER RESEARCH AND HER

2838
01:42:28,360 --> 01:42:30,120
COMMENTS REALLY ADD A CRITICAL

2839
01:42:30,120 --> 01:42:32,560
DIMENSION TO WHAT WE DO IN THE

2840
01:42:32,560 --> 01:42:37,800
LANGUAGE INTERVENTION FIELD.

2841
01:42:37,800 --> 01:42:40,000
FRED'S TALK IS ALWAYS SO

2842
01:42:40,000 --> 01:42:41,400
SOPHISTICATED AND ALWAYS

2843
01:42:41,400 --> 01:42:42,360
EMBARRASSES ME ABOUT HOW LITTLE

2844
01:42:42,360 --> 01:42:43,640
I KNOW ABOUT TECHNOLOGY.

2845
01:42:43,640 --> 01:42:45,920
I WANT TO MAKE A COUPLE OF

2846
01:42:45,920 --> 01:42:48,240
COMMENTS ON EYE TRACKING.

2847
01:42:48,240 --> 01:42:49,720
I THINK THE BEAUTY OF EYE

2848
01:42:49,720 --> 01:42:51,920
TRACKING WHICH FRED SO NICELY

2849
01:42:51,920 --> 01:42:53,480
ILLUSTRATED, WAS THE FACT THAT

2850
01:42:53,480 --> 01:42:55,840
WE CAN OVERCOME SOME OF THE

2851
01:42:55,840 --> 01:42:57,200
QUOTE/UNQUOTE PERFORMANCE

2852
01:42:57,200 --> 01:42:58,280
LIMITATIONS OF INDIVIDUALS TO

2853
01:42:58,280 --> 01:42:59,200
REALLY UNDERSTAND WHAT IS GOING

2854
01:42:59,200 --> 01:43:01,280
ON IN THEIR HEAD, WHAT THEY

2855
01:43:01,280 --> 01:43:02,920
KNOW, WHAT THEIR INTENTIONS ARE.

2856
01:43:02,920 --> 01:43:05,600
AND I THINK THAT IS INCREDIBLY

2857
01:43:05,600 --> 01:43:05,880
VALUABLE.

2858
01:43:05,880 --> 01:43:07,840
I THINK HIS POINT ABOUT LOST

2859
01:43:07,840 --> 01:43:09,960
DATA IS OFTEN NEGLECTED IN THE

2860
01:43:09,960 --> 01:43:11,320
FIELD WHEN WE USE THESE

2861
01:43:11,320 --> 01:43:13,120
AUTOMATED MEASURES.

2862
01:43:13,120 --> 01:43:14,760
I THINK THAT RECOGNIZING WE MAY

2863
01:43:14,760 --> 01:43:18,680
NEED TO DO SOME TRAINING THROUGH

2864
01:43:18,680 --> 01:43:19,800
BEHAVIOR ANALYSTS IN TERMS OF

2865
01:43:19,800 --> 01:43:21,160
GETTING PEOPLE READY TO

2866
01:43:21,160 --> 01:43:22,360
PARTICIPATE IN EYE TRACKING SO

2867
01:43:22,360 --> 01:43:24,560
WE HAVE MORE PEOPLE THAT CAN

2868
01:43:24,560 --> 01:43:26,080
PARTICIPATE AND FEWER LOST DATA

2869
01:43:26,080 --> 01:43:28,200
POINTS IS REALLY CRITICAL.

2870
01:43:28,200 --> 01:43:29,920
I DO THINK THAT THE THINGS THAT

2871
01:43:29,920 --> 01:43:31,400
WE NEED TO THINK ABOUT AS WE

2872
01:43:31,400 --> 01:43:33,400
LOOK AT THESE MORE SUBTLE

2873
01:43:33,400 --> 01:43:35,760
TECHNOLOGICAL MEASURES IS ARE

2874
01:43:35,760 --> 01:43:37,120
THEY TIED -- CAN WE SHOW THEY

2875
01:43:37,120 --> 01:43:39,960
ARE TIED TO MORE FUNCTIONAL

2876
01:43:39,960 --> 01:43:40,360
OUTCOME MEASURES?

2877
01:43:40,360 --> 01:43:44,080
IF EYE TRACKING DOESN'T PREDICT

2878
01:43:44,080 --> 01:43:45,320
COMMUNICATION USE AND MORE

2879
01:43:45,320 --> 01:43:46,720
NATURALISTIC SETTINGS, THAT

2880
01:43:46,720 --> 01:43:47,840
BECOMES PROBLEMATIC.

2881
01:43:47,840 --> 01:43:49,120
I THINK WE NEED TO HAVE THOSE

2882
01:43:49,120 --> 01:43:49,800
KINDS OF DATA.

2883
01:43:49,800 --> 01:43:51,320
I ALSO THINK EYE TRACKING

2884
01:43:51,320 --> 01:43:54,240
MEASURES, WE NEED TO BEGIN TO DO

2885
01:43:54,240 --> 01:43:54,800
REALLY SERIOUS PSYCHOMETRIC

2886
01:43:54,800 --> 01:43:55,000
WORK.

2887
01:43:55,000 --> 01:43:57,960
WE NEED TO ASK ABOUT ISSUES OF

2888
01:43:57,960 --> 01:43:59,680
CONSTRUCT VALIDITIY, TEST FOR

2889
01:43:59,680 --> 01:44:00,920
RELIABILITY AND PRACTICE EFFECTS

2890
01:44:00,920 --> 01:44:01,600
AND SO ON.

2891
01:44:01,600 --> 01:44:02,960
WE ARE TO THE POINT WITH MANY OF

2892
01:44:02,960 --> 01:44:05,640
THESE MEASURES WE CAN BEGIN TO

2893
01:44:05,640 --> 01:44:08,400
DO THAT.

2894
01:44:08,400 --> 01:44:11,080
I THINK -- I WOULD ALSO THINK

2895
01:44:11,080 --> 01:44:11,720
THAT WONG OF THE THINGS THAT

2896
01:44:11,720 --> 01:44:13,200
NANCY DIDN'T TOUCH ON THIS TOO

2897
01:44:13,200 --> 01:44:15,480
MUCH BUT I THINK WHEN WE THINK

2898
01:44:15,480 --> 01:44:17,080
ABOUT THE TIMEFRAME OF

2899
01:44:17,080 --> 01:44:19,000
MEASUREMENT AND INTERVENTION

2900
01:44:19,000 --> 01:44:21,440
STUDIES, UNFORTUNATELY WE TAKE

2901
01:44:21,440 --> 01:44:23,280
PRE AND POST AND A LITTLE BIT OF

2902
01:44:23,280 --> 01:44:25,120
MAINTENANCE AND SOME OF THESE

2903
01:44:25,120 --> 01:44:25,440
INTERVENTIONS.

2904
01:44:25,440 --> 01:44:26,560
BUT WE EXPECT THAT LEARNING WILL

2905
01:44:26,560 --> 01:44:28,200
CONTINUE TO IMPROVE OVER TIME.

2906
01:44:28,200 --> 01:44:31,760
SO WE REALLY NEED A LONGER

2907
01:44:31,760 --> 01:44:33,360
DURATION OF ASSESSMENTS AND

2908
01:44:33,360 --> 01:44:34,200
INTERVENTIONS TO UNDERSTAND

2909
01:44:34,200 --> 01:44:34,520
THEIR EFFECTS.

2910
01:44:34,520 --> 01:44:35,720
AND I THINK THAT IS PARTICULARLY

2911
01:44:35,720 --> 01:44:37,440
TRUE WHEN WE TALK ABOUT

2912
01:44:37,440 --> 01:44:38,720
CAREGIVER IMPLEMENTED

2913
01:44:38,720 --> 01:44:39,440
INTERVENTIONS WHERE THE EFFECTS

2914
01:44:39,440 --> 01:44:42,080
MAY BE REALLY DELAYED.

2915
01:44:42,080 --> 01:44:44,080
AND I THINK THAT HAS AN IMPACT,

2916
01:44:44,080 --> 01:44:46,440
THAT IS IMPACTED BY THE FUNDING

2917
01:44:46,440 --> 01:44:48,680
MECHANISMS WE HAVE THAT HAVE

2918
01:44:48,680 --> 01:44:49,640
THESE FIVE YEAR CYCLES.

2919
01:44:49,640 --> 01:44:51,760
THAT IS SOMETHING TO THINK

2920
01:44:51,760 --> 01:44:52,120
ABOUT.

2921
01:44:52,120 --> 01:44:54,520
I WANT TO ALSO JUST KIND OF

2922
01:44:54,520 --> 01:44:56,720
ARGUE A LITTLE BIT FOR US TO

2923
01:44:56,720 --> 01:44:58,840
RELY MORE ON NATURALISTIC

2924
01:44:58,840 --> 01:44:59,720
COMMUNICATION SAMPLING WHERE WE

2925
01:44:59,720 --> 01:45:01,640
ARE REALLY LOOKING AT PEOPLE IN

2926
01:45:01,640 --> 01:45:04,640
EVERY DAY MEANINGFUL CONTEXT AND

2927
01:45:04,640 --> 01:45:06,800
OBSERVING THEIR BEHAVIOR

2928
01:45:06,800 --> 01:45:07,680
MAKING -- THE VALUE OF THAT IS

2929
01:45:07,680 --> 01:45:10,040
WE CAN LOOK AT COMMUNICATION

2930
01:45:10,040 --> 01:45:13,960
WHETHER INDEPENDENT OF MODALITY.

2931
01:45:13,960 --> 01:45:15,320
I THINK THAT IDEALLY IT IS GREAT

2932
01:45:15,320 --> 01:45:17,320
TO LOOK AT, HAVE LOTS OF DATA

2933
01:45:17,320 --> 01:45:18,880
POINTS OVER MANY DIFFERENT

2934
01:45:18,880 --> 01:45:20,120
CONTEXT IN A PERSON'S LIFE.

2935
01:45:20,120 --> 01:45:22,760
AS CATHY POINTED OUT, THAT IS

2936
01:45:22,760 --> 01:45:23,920
NOT FEASIBLE.

2937
01:45:23,920 --> 01:45:26,440
I DO THINK THAT AS ARTIFICIAL

2938
01:45:26,440 --> 01:45:27,000
INTELLIGENCE AND MACHINE

2939
01:45:27,000 --> 01:45:28,080
LEARNING IMPROVE, I THINK THAT

2940
01:45:28,080 --> 01:45:29,720
MAYBE THAT BECOMES MORE

2941
01:45:29,720 --> 01:45:30,000
REALISTIC.

2942
01:45:30,000 --> 01:45:31,360
IN THE SHORT TERNAL, I THINK WE

2943
01:45:31,360 --> 01:45:33,880
HAVE TO TAKE BRIEF SAMPLES SO WE

2944
01:45:33,880 --> 01:45:35,840
ARE NOT UNDULY BURDENING

2945
01:45:35,840 --> 01:45:36,880
RESEARCHERS OR FAMILIES IN TERMS

2946
01:45:36,880 --> 01:45:39,240
OF HOW OFTEN WE ARE IN THEIR

2947
01:45:39,240 --> 01:45:39,520
LIVES.

2948
01:45:39,520 --> 01:45:41,840
I THINK IF WE GO WITH GRIEF

2949
01:45:41,840 --> 01:45:43,600
SAMPLES WE REALLY NEED TO

2950
01:45:43,600 --> 01:45:47,720
BALANCE NATURALISTIC SETTINGS

2951
01:45:47,720 --> 01:45:49,240
WITH STANDARDIZATION.

2952
01:45:49,240 --> 01:45:51,000
AND I THINK THE BASK IS A NICE

2953
01:45:51,000 --> 01:45:52,480
EXAMPLE OF THAT.

2954
01:45:52,480 --> 01:45:55,560
IT'S NATURALISTIC.

2955
01:45:55,560 --> 01:45:57,200
BUT THERE IS STRUCTURE IN TERMS

2956
01:45:57,200 --> 01:45:59,040
OF HOW YOU'RE DOING IT.

2957
01:45:59,040 --> 01:46:05,400
IF WE DON'T HAVE STRUCTURE, IF

2958
01:46:05,400 --> 01:46:05,800
WE DON'T HAVE SOME

2959
01:46:05,800 --> 01:46:06,400
STANDARDIZATION OF CONTENT AND

2960
01:46:06,400 --> 01:46:07,040
STANDARDIZATION OF THE PARTNER'S

2961
01:46:07,040 --> 01:46:07,600
BEHAVIOR, IT BECOMES REALLY

2962
01:46:07,600 --> 01:46:09,320
DIFFICULT TO HAVE COMPARABLE

2963
01:46:09,320 --> 01:46:10,200
ASSESSMENTS OVER TIME TO LOOK AT

2964
01:46:10,200 --> 01:46:12,560
AN INDIVIDUAL IN WHICH AN

2965
01:46:12,560 --> 01:46:14,120
INDIVIDUAL IS CHANGED.

2966
01:46:14,120 --> 01:46:16,160
SO WE REALLY NEED TO BALANCE

2967
01:46:16,160 --> 01:46:18,080
NATURALISTIC ASSESSMENTS WITH

2968
01:46:18,080 --> 01:46:20,000
STRUCTURE AND STANDARDIZATION.

2969
01:46:20,000 --> 01:46:22,160
WE HAVE DONE THAT IN DIFFERENT

2970
01:46:22,160 --> 01:46:23,360
POPULATIONS THAT HAVE PHRASED

2971
01:46:23,360 --> 01:46:27,080
SPEECH LOOKING AT EXPRESSIVE

2972
01:46:27,080 --> 01:46:29,040
LANGUAGE SAMPLEELING AND IT IS

2973
01:46:29,040 --> 01:46:29,280
DOABLE.

2974
01:46:29,280 --> 01:46:31,680
WE SHOULD SHOWN YOU CAN TRAIN

2975
01:46:31,680 --> 01:46:34,000
PARENTS TO BE JUST AS EVENT.

2976
01:46:34,000 --> 01:46:34,760
ADMINISTRATION OF THESE MEASURES

2977
01:46:34,760 --> 01:46:37,000
AND ADHERING TO STRUCTURE WITH

2978
01:46:37,000 --> 01:46:38,320
TRAINING AS EXAMINERS.

2979
01:46:38,320 --> 01:46:39,800
SO I THINK THERE IS LOT OF

2980
01:46:39,800 --> 01:46:40,960
THINGS WE NEED TO DO.

2981
01:46:40,960 --> 01:46:42,160
BUT I THINK STRUCTURE IS

2982
01:46:42,160 --> 01:46:45,480
CRITICAL IF WE ARE GOING TO HAVE

2983
01:46:45,480 --> 01:46:45,880
SHORT ASSESSMENTS.

2984
01:46:45,880 --> 01:46:47,960
A COUPLE OF OTHER POINTED I

2985
01:46:47,960 --> 01:46:49,040
THINK ARE CRITICAL TO ANYTHING

2986
01:46:49,040 --> 01:46:50,760
WE DO WITH OUTCOME MEASURES.

2987
01:46:50,760 --> 01:46:53,680
WE REALLY NEED TO THINK ABOUT

2988
01:46:53,680 --> 01:46:54,840
THE PSYCHOMETRIC PROPERTIES.

2989
01:46:54,840 --> 01:46:56,840
AND WE NEED TO LOOK AT THOSE

2990
01:46:56,840 --> 01:46:58,880
BORING THINGS LIKE TEST RETEST

2991
01:46:58,880 --> 01:46:59,800
RELIABILITY AND PRACTICE EFFECTS

2992
01:46:59,800 --> 01:47:01,080
AND ALL OF THAT.

2993
01:47:01,080 --> 01:47:02,560
AND TO DO THAT, YOU NEED A

2994
01:47:02,560 --> 01:47:04,720
FAIRLY LARGE SAMPLE OF

2995
01:47:04,720 --> 01:47:06,280
PARTICIPANTS, WHICH WILL BE A

2996
01:47:06,280 --> 01:47:07,040
CHALLENGE, I THINK, FOR OUR

2997
01:47:07,040 --> 01:47:07,440
FIELD.

2998
01:47:07,440 --> 01:47:09,080
AND JUST ONE EXAMPLE, WE DID IN

2999
01:47:09,080 --> 01:47:11,160
OUR STUDIES OF DIFFERENT GROUPS

3000
01:47:11,160 --> 01:47:13,160
OF INDIVIDUALS WITH INTELLECTUAL

3001
01:47:13,160 --> 01:47:13,880
AND DEVELOPMENTAL DISABILITIES

3002
01:47:13,880 --> 01:47:15,960
AS WELL AS INDIVIDUALS WITH

3003
01:47:15,960 --> 01:47:17,640
AUTISM, WE HAD CLOSE TO 100

3004
01:47:17,640 --> 01:47:19,680
PARTICIPANTS SO WE CAN REALLY

3005
01:47:19,680 --> 01:47:22,480
GENERATE AND SHOW THAT WE HAVE

3006
01:47:22,480 --> 01:47:23,360
GOOD TEST RETEST RELIABILITY AND

3007
01:47:23,360 --> 01:47:25,040
ALL THOSE THINGS.

3008
01:47:25,040 --> 01:47:26,480
AND NO PRACTICE EFFECTS.

3009
01:47:26,480 --> 01:47:29,120
BUT 100 PARTICIPANTS WORKS AT A

3010
01:47:29,120 --> 01:47:30,640
GROUP LEVEL T DOESN'T WORK VERY

3011
01:47:30,640 --> 01:47:32,400
WELL WHEN YOU WANT TO HAVE AN

3012
01:47:32,400 --> 01:47:33,640
INDIVIDUALIZED MEASURE LIKE

3013
01:47:33,640 --> 01:47:35,720
RELIABLE INDEX OF CHANGE.

3014
01:47:35,720 --> 01:47:37,880
AND SO, WHEN WE LOOK AT

3015
01:47:37,880 --> 01:47:38,800
STANDARDIZED TESTS, WHICH I

3016
01:47:38,800 --> 01:47:40,800
THINK ARE NOT ADEQUATE FOR

3017
01:47:40,800 --> 01:47:42,520
OUTCOME MEASURES, WE ARE TALKING

3018
01:47:42,520 --> 01:47:44,520
ABOUT STANDARDIZATION ON SAMPLES

3019
01:47:44,520 --> 01:47:47,120
OF HUNDREDS IF NOT THOUSANDS OF

3020
01:47:47,120 --> 01:47:47,560
PARTICIPANTS.

3021
01:47:47,560 --> 01:47:49,160
SO I THINK ONE OF THE

3022
01:47:49,160 --> 01:47:50,200
CHANNELLESS FOR THE FIELD THEN

3023
01:47:50,200 --> 01:47:52,200
IS MAYBE AS WE DO INTERVENTIONS

3024
01:47:52,200 --> 01:47:56,000
IS TO BUILD IN SOME PSYCHOMETRIC

3025
01:47:56,000 --> 01:47:57,600
WORK AND AGGREGATE ACROSS

3026
01:47:57,600 --> 01:47:57,800
STUDIES.

3027
01:47:57,800 --> 01:48:00,800
SO MAYBE WE HAVE A LONGER

3028
01:48:00,800 --> 01:48:02,240
PLACEBO LEAD IN PHASE TO A

3029
01:48:02,240 --> 01:48:03,480
TREATMENT TRIAL WHERE WE CAN

3030
01:48:03,480 --> 01:48:05,920
LOOK AT TEST RETEST RELIABILITY

3031
01:48:05,920 --> 01:48:07,560
PRACTICE EFFECTS, CONSTRUCT

3032
01:48:07,560 --> 01:48:09,080
VALIDITY AND IF WE DO THE SAME

3033
01:48:09,080 --> 01:48:11,040
SORTS OF MEASURES ACROSS

3034
01:48:11,040 --> 01:48:12,160
MULTIPLE INTERVENTIONS, WE MAY

3035
01:48:12,160 --> 01:48:14,120
GET THERE IN TERMS OF

3036
01:48:14,120 --> 01:48:14,640
PSYCHOMETRICS.

3037
01:48:14,640 --> 01:48:16,520
AND THEN THE LAST COMMENTS I'LL

3038
01:48:16,520 --> 01:48:20,160
MAKE REALLY HAVE TO DO WITH KIND

3039
01:48:20,160 --> 01:48:22,320
OF THE PARTICIPANTS IN OUR

3040
01:48:22,320 --> 01:48:24,280
SAMPLE OFTENTIMES WERE NOT VERY

3041
01:48:24,280 --> 01:48:26,320
GOOD ABOUT CREATING PSYCHOMELT

3042
01:48:26,320 --> 01:48:28,920
RICK WORK THAT MAPS ON TO WHO

3043
01:48:28,920 --> 01:48:31,000
ARE THE PEOPLE MOST LIKELY TO BE

3044
01:48:31,000 --> 01:48:31,640
INTERVENTIONS.

3045
01:48:31,640 --> 01:48:34,360
SO IF WE CREATE PSYCHOMETRIC

3046
01:48:34,360 --> 01:48:35,520
PROPERTIES FOR ONE SAMPLE BUT

3047
01:48:35,520 --> 01:48:37,040
THOSE AREN'T THE PEOPLE IN OUR

3048
01:48:37,040 --> 01:48:38,800
INTERVENTION, WE HAVE DONE A

3049
01:48:38,800 --> 01:48:40,280
DISSERVICE.

3050
01:48:40,280 --> 01:48:42,400
AND MY LAST POINT IS THAT WE

3051
01:48:42,400 --> 01:48:44,080
REALLY NEED, WHEN WE CREATE

3052
01:48:44,080 --> 01:48:45,400
THESE MEASURES, WE NEED TO

3053
01:48:45,400 --> 01:48:47,000
REALLY THINK ABOUT THE DIVERSITY

3054
01:48:47,000 --> 01:48:47,720
OF OUR SAMPLES.

3055
01:48:47,720 --> 01:48:48,680
RIGHT NOW, FOR EXAMPLE, IF WE

3056
01:48:48,680 --> 01:48:50,920
ARE DOING WORK ON LANGUAGE, WE

3057
01:48:50,920 --> 01:48:53,400
HAVE VIRTUALLY NO MEASURES OF

3058
01:48:53,400 --> 01:48:54,760
LANGUAGE THAT ARE

3059
01:48:54,760 --> 01:48:55,720
PSYCHOMETRICALLY VALIDATED IF

3060
01:48:55,720 --> 01:48:57,600
ARE SPANISH SPEAKERS, AS ONE

3061
01:48:57,600 --> 01:48:57,880
EXAMPLE.

3062
01:48:57,880 --> 01:48:59,040
AND THAT MEANS THAT THESE PEOPLE

3063
01:48:59,040 --> 01:49:01,520
ARE CUT OUT OF TREATMENT TRIALS

3064
01:49:01,520 --> 01:49:04,680
AND THEREFORE THAT HURDLE OUR

3065
01:49:04,680 --> 01:49:04,920
SCIENCE.

3066
01:49:04,920 --> 01:49:08,080
IT ALSO HURTS THEM IN TERMS OF

3067
01:49:08,080 --> 01:49:08,640
ACCESS TO BENEFITS.

3068
01:49:08,640 --> 01:49:09,960
DIVERSITY IS JUST AN ABSOLUTELY

3069
01:49:09,960 --> 01:49:11,440
CRITICAL THING WHEN WE ARE

3070
01:49:11,440 --> 01:49:13,880
TALKING ABOUT OUTCOME

3071
01:49:13,880 --> 01:49:14,200
MEASURINGS.

3072
01:49:14,200 --> 01:49:14,800
I'M SORRY TO GO OVER A LITTLE

3073
01:49:14,800 --> 01:49:17,920
BIT BUT THAT'S IT FOR ME.

3074
01:49:17,920 --> 01:49:19,040
THANK YOU.

3075
01:49:19,040 --> 01:49:21,480
>>HELEN TAGER-FLUSBERG:
THANK

3076
01:49:21,480 --> 01:49:22,280
YOU, LEN.

3077
01:49:22,280 --> 01:49:25,160
YOU BROUGHT UP SO MANY IMPORTANT

3078
01:49:25,160 --> 01:49:27,160
POINTS AND REALLY REMINDED US

3079
01:49:27,160 --> 01:49:30,400
HOW CHALLENGING IT IS TO WORK ON

3080
01:49:30,400 --> 01:49:31,560
OUTCOME MEASURES THAT ARE GOING

3081
01:49:31,560 --> 01:49:37,000
TO BE MEANINGFUL FOR THE FULL

3082
01:49:37,000 --> 01:49:40,040
RANGE OF PEOPLE WHO NOT ONLY ARE

3083
01:49:40,040 --> 01:49:43,720
BUT REALLY SHOULD BE IN OUR

3084
01:49:43,720 --> 01:49:45,000
INTERVENTIONS RESEARCH.

3085
01:49:45,000 --> 01:49:45,640
THANK YOU VERY MUCH.

3086
01:49:45,640 --> 01:49:48,240
I'M GOING TO TURN THE FLOOR BACK

3087
01:49:48,240 --> 01:49:50,600
TO CONNIE WHO IS GOING TO

3088
01:49:50,600 --> 01:49:52,760
INTRODUCE OUR NEXT SESSION.

3089
01:49:52,760 --> 01:49:54,680
>>CONNIE KASARI: MOVING
RIGHT

3090
01:49:54,680 --> 01:49:55,080
ALONG.

3091
01:49:55,080 --> 01:49:56,920
WE ARE DOING WELL ON TIME SO

3092
01:49:56,920 --> 01:49:57,960
THIS IS GREAT.

3093
01:49:57,960 --> 01:50:00,040
SO, I WANT TO MAKE A COMMENT

3094
01:50:00,040 --> 01:50:02,680
ABOUT SO FAR, WE HAD THIS VERY

3095
01:50:02,680 --> 01:50:05,160
RICH DISCUSSION YESTERDAY AND

3096
01:50:05,160 --> 01:50:05,800
TODAY.

3097
01:50:05,800 --> 01:50:08,600
AND FROM PRACTITIONERS AND

3098
01:50:08,600 --> 01:50:10,920
CLINICIANS, FROM RESEARCHERS AND

3099
01:50:10,920 --> 01:50:13,280
FROM PARENTS OF MINIMALLY VERBAL

3100
01:50:13,280 --> 01:50:16,400
AND OFTENTIMES WITH CO-OCCURRING

3101
01:50:16,400 --> 01:50:17,040
INTELLECTUAL DISABILITY.

3102
01:50:17,040 --> 01:50:20,280
THAT IS A REALLY IMPORTANT

3103
01:50:20,280 --> 01:50:20,480
VOICE.

3104
01:50:20,480 --> 01:50:22,560
THE PARENTS ARE REALLY A SECOND

3105
01:50:22,560 --> 01:50:22,760
VOICE.

3106
01:50:22,760 --> 01:50:25,080
THEY ARE SPEAKING FOR THEIR

3107
01:50:25,080 --> 01:50:27,320
CHILDREN OR ADULTS WHO CANNOT

3108
01:50:27,320 --> 01:50:30,120
SPEAK FOR THEMSELVES.

3109
01:50:30,120 --> 01:50:31,240
WE HAVEN'T HEARD AS MUCH FROM

3110
01:50:31,240 --> 01:50:34,480
PEOPLE WHO ARE SPEAKING IN FIRST

3111
01:50:34,480 --> 01:50:34,760
VOICE.

3112
01:50:34,760 --> 01:50:38,080
SO WE ARE VERY PLEASED THAT WE

3113
01:50:38,080 --> 01:50:41,680
HAVE TWO SPEAKERS TODAY WHO ARE

3114
01:50:41,680 --> 01:50:44,160
BEING VERY COURAGEOUS IN HAVING

3115
01:50:44,160 --> 01:50:48,920
A CONVERSATION THAT IS MODERATED

3116
01:50:48,920 --> 01:50:50,240
BY A VASE VASE WHO HAS BEEN

3117
01:50:50,240 --> 01:50:52,320
SPENDING HIS -- SARAH SANDERS

3118
01:50:52,320 --> 01:50:53,280
JASER -- WHO HAS BEEN SPENDING

3119
01:50:53,280 --> 01:50:56,800
HIS TIME WITH THESE INDIVIDUALS.

3120
01:50:56,800 --> 01:50:58,320
-- VICK RAM JASWALL.

3121
01:50:58,320 --> 01:51:00,960
I SPENT A BIT OF TIME WITH GRANT

3122
01:51:00,960 --> 01:51:05,000
BLASCO AND GEORGE ZIMMERMAN.

3123
01:51:05,000 --> 01:51:06,000
I'M THRILLED THEY ARE HERE TO

3124
01:51:06,000 --> 01:51:06,280
TALK.

3125
01:51:06,280 --> 01:51:08,520
WE ARE GOING TO START WITH A FEW

3126
01:51:08,520 --> 01:51:10,320
MINUTES FROM JORDYN WHO DIDN'T

3127
01:51:10,320 --> 01:51:11,160
SPEAK YESTERDAY BY HERSELF.

3128
01:51:11,160 --> 01:51:15,360
SHE WILL SPEAK FOR A FEW MINUTES

3129
01:51:15,360 --> 01:51:16,200
AND THEN VICK RAM WILL MODERATE

3130
01:51:16,200 --> 01:51:17,640
A CONVERSATION BETWEEN THE THREE

3131
01:51:17,640 --> 01:51:18,480
OF THEM.

3132
01:51:18,480 --> 01:51:20,600
SO THIS IS REALLY IMPORTANT AND

3133
01:51:20,600 --> 01:51:23,040
WE ARE REALLY HAPPY THAT YOU'RE

3134
01:51:23,040 --> 01:51:28,480
HERE.

3135
01:51:28,480 --> 01:51:38,640
JORDYN?

3136
01:51:43,280 --> 01:51:44,000
>>HI, EVERYONE.

3137
01:51:44,000 --> 01:51:46,600
I'M GEORGE ZIMMERMAN.

3138
01:51:46,600 --> 01:51:47,840
THROUGH VISUAL ACCESS I'M A

3139
01:51:47,840 --> 01:51:49,800
WHITE WOMAN WITH WAVY BROWN

3140
01:51:49,800 --> 01:51:50,000
HAIR.

3141
01:51:50,000 --> 01:51:51,800
I'M WARING A GREEN BLOUSE AND

3142
01:51:51,800 --> 01:51:54,520
SITTING IN FRONT OF TWO FLORAL

3143
01:51:54,520 --> 01:51:54,800
PAINTINGS.

3144
01:51:54,800 --> 01:51:56,280
I COMMUNICATE BY TYPING LETTER

3145
01:51:56,280 --> 01:51:58,040
BY LETTER ON AN iPAD WHICH

3146
01:51:58,040 --> 01:52:00,680
THEN SPEAKS MY WORDS ALLOWED.

3147
01:52:00,680 --> 01:52:01,320
THANKS TO THE CO-CHAIRS FOR

3148
01:52:01,320 --> 01:52:04,680
HAVING ME PARTICIPATE IN THIS

3149
01:52:04,680 --> 01:52:04,920
WEBINAR.

3150
01:52:04,920 --> 01:52:07,160
NOW, BEFORE WE GET INTO THE

3151
01:52:07,160 --> 01:52:09,600
CONVERSATION ASPECT THIS

3152
01:52:09,600 --> 01:52:10,920
DISCUSSION, I'M GOING TO SHARE

3153
01:52:10,920 --> 01:52:14,440
MY OWN LIVED EXPERIENCE AS A

3154
01:52:14,440 --> 01:52:15,520
NON-SPEAKING AUTISTIC PERSON WHO

3155
01:52:15,520 --> 01:52:16,920
HAS BEEN CALLED SEVERE AND

3156
01:52:16,920 --> 01:52:17,760
PROFOUND AND WILL INCLUDE

3157
01:52:17,760 --> 01:52:21,160
RESEARCH RECOMMENDATIONS FOR

3158
01:52:21,160 --> 01:52:21,480
CONSIDERATION.

3159
01:52:21,480 --> 01:52:22,600
WHILE I'M EXTREMELY HONORED TO

3160
01:52:22,600 --> 01:52:24,800
SHARE WITH ALL OF YOU, I WANT TO

3161
01:52:24,800 --> 01:52:28,120
POINT OUT THAT AN ESTIMATED

3162
01:52:28,120 --> 01:52:29,440
THIRT-40% OF THE MORE THAN 5

3163
01:52:29,440 --> 01:52:31,440
MILLION AUTISTIC PEOPLE LIKE

3164
01:52:31,440 --> 01:52:32,240
MYSELF IN THE UNITED STATES,

3165
01:52:32,240 --> 01:52:35,320
ALSO RELY ON COMMUNICATION

3166
01:52:35,320 --> 01:52:36,480
SUPPORT.

3167
01:52:36,480 --> 01:52:38,000
BUT MOST DON'T HAVE IT AS WAS

3168
01:52:38,000 --> 01:52:39,120
SAID YESTERDAY.

3169
01:52:39,120 --> 01:52:41,000
I'M ONLY ONE SPEAKING AUTISTIC

3170
01:52:41,000 --> 01:52:42,200
PERSON AND WHILE WE MAY HAVE

3171
01:52:42,200 --> 01:52:44,520
SOME THINGS IN COMMON, I CAN

3172
01:52:44,520 --> 01:52:46,400
ONLY SHARE MY EXPERIENCE ALONE

3173
01:52:46,400 --> 01:52:48,360
AND DO NOT AND CANNOT CLAIM TO

3174
01:52:48,360 --> 01:52:50,160
REPRESENT MORE THAN A MILLION

3175
01:52:50,160 --> 01:52:50,560
OTHERS.

3176
01:52:50,560 --> 01:52:53,200
AS A YOUNG KID, I WAS PUT ON A

3177
01:52:53,200 --> 01:52:55,120
PATH OF SEGREGATION.

3178
01:52:55,120 --> 01:52:56,320
PLACES SEEMED TO ASSUME THAT

3179
01:52:56,320 --> 01:52:58,600
BECAUSE I COULDN'T COMMUNICATE

3180
01:52:58,600 --> 01:53:00,040
RELIABLY WITH SPEECH AND HAD

3181
01:53:00,040 --> 01:53:01,520
WHAT THEY REFERRED TO AS

3182
01:53:01,520 --> 01:53:02,360
CHALLENGING BEHAVIORS THAT THEY

3183
01:53:02,360 --> 01:53:04,720
DIDN'T NEED TO MAKE SPACE FOR

3184
01:53:04,720 --> 01:53:05,120
ME.

3185
01:53:05,120 --> 01:53:07,440
BUT AS I WERE, LEGALLY, I HAD

3186
01:53:07,440 --> 01:53:08,800
EVERY RIGHT TO BE INCLUDED IN MY

3187
01:53:08,800 --> 01:53:10,280
SCHOOL AND COMMUNITY.

3188
01:53:10,280 --> 01:53:12,880
ACCESS TO RELIABLE

3189
01:53:12,880 --> 01:53:14,120
COMMUNICATIONS SHOULD HAVE BEEN

3190
01:53:14,120 --> 01:53:16,120
PROVIDED TO ME BUT IT SHOULD NOT

3191
01:53:16,120 --> 01:53:19,320
HAVE BEEN -- TO LEARN, PLAY OR

3192
01:53:19,320 --> 01:53:19,560
THRIVE.

3193
01:53:19,560 --> 01:53:21,200
AS GRANT SHARED DURING THE

3194
01:53:21,200 --> 01:53:22,720
STAKEHOLDER PANEL YESTERDAY, AND

3195
01:53:22,720 --> 01:53:25,720
WHICH I RELATED TO THIS LACK OF

3196
01:53:25,720 --> 01:53:26,600
COMMUNICATION CAUSED A VICIOUS

3197
01:53:26,600 --> 01:53:27,840
CYCLE OF TRAUMA WHICH IS

3198
01:53:27,840 --> 01:53:28,800
IMPACTED ME DEEPLY.

3199
01:53:28,800 --> 01:53:30,760
THIS IS ALL ONE REASON

3200
01:53:30,760 --> 01:53:32,480
RESEARCHERS MUST PRIORITIZE

3201
01:53:32,480 --> 01:53:33,440
COMMUNICATION SUPPORT FOR YOUNG

3202
01:53:33,440 --> 01:53:35,760
CHILDREN WHO NEED IT AS EARLY AS

3203
01:53:35,760 --> 01:53:37,000
POSSIBLE AND PUSH LEGISLATION

3204
01:53:37,000 --> 01:53:39,120
THAT INCREASES INCLUSIVE

3205
01:53:39,120 --> 01:53:42,320
PRACTICES, WHILE DECREASING

3206
01:53:42,320 --> 01:53:42,640
SEGREGATION.

3207
01:53:42,640 --> 01:53:45,520
LATER, I RECEIVED AN IQ SCORE OF

3208
01:53:45,520 --> 01:53:45,880
61.

3209
01:53:45,880 --> 01:53:48,840
THE ASSUMPTIONS YOU SHOULD LYING

3210
01:53:48,840 --> 01:53:50,480
MY IQ SCORE HAVE SUCH A NEGATIVE

3211
01:53:50,480 --> 01:53:52,000
IMPACT ON PEOPLE'S PERCEPTIONS

3212
01:53:52,000 --> 01:53:53,880
OF ME AS WELL AS MY PERCEPTION

3213
01:53:53,880 --> 01:53:55,080
OF MYSELF.

3214
01:53:55,080 --> 01:53:56,560
PROFESSIONALS TALKED AROUND ME

3215
01:53:56,560 --> 01:53:58,240
THINKING I DIDN'T UNDERSTAND.

3216
01:53:58,240 --> 01:54:01,280
WHILE THERE IS NOTHING SHAMEFUL

3217
01:54:01,280 --> 01:54:03,240
ABOUT THE IQ SCORE THEY WERE

3218
01:54:03,240 --> 01:54:04,600
CONVEYING TO ME I WAS A FAILURE

3219
01:54:04,600 --> 01:54:08,040
IN SOCIETY BECAUSE OF MY POOR

3220
01:54:08,040 --> 01:54:09,160
MOTOR SKILLS AND APPROXIA.

3221
01:54:09,160 --> 01:54:11,040
I BELIEVE RESEARCHERSES MUST

3222
01:54:11,040 --> 01:54:12,440
PRIORITIZE POLICIES THAT MAKE

3223
01:54:12,440 --> 01:54:14,480
SURE IQ TESTS ARE NOT GIVEN TO

3224
01:54:14,480 --> 01:54:17,000
PEOPLE WHO DO NOT HAVE ACCESS TO

3225
01:54:17,000 --> 01:54:17,880
RELIABLE OR EFFECTIVE

3226
01:54:17,880 --> 01:54:19,520
COMMUNICATION AM WE MUST

3227
01:54:19,520 --> 01:54:20,440
CONSTANTLY REMEMBER THAT SPEECH

3228
01:54:20,440 --> 01:54:23,320
IS A MOTOR FUNCTION NOT A

3229
01:54:23,320 --> 01:54:23,760
COGNITIVE FUNCTION.

3230
01:54:23,760 --> 01:54:25,760
WHEN WE USE WORDING THAT

3231
01:54:25,760 --> 01:54:28,680
DEGRADES, SUCH AS SEVERE, NON

3232
01:54:28,680 --> 01:54:29,920
COMMUNICATIVE, COMPLEX, PROFOUND

3233
01:54:29,920 --> 01:54:32,480
AND CHALLENGING, WE PAINTED A

3234
01:54:32,480 --> 01:54:34,600
PICTURE OF PEOPLE AND

3235
01:54:34,600 --> 01:54:35,240
INADVERTENTLY EVOKE FEAR WHETHER

3236
01:54:35,240 --> 01:54:37,720
OR NOT THAT IS THE INTENTION.

3237
01:54:37,720 --> 01:54:38,720
THIS PLAYS A ROLE IN SEGREGATING

3238
01:54:38,720 --> 01:54:41,720
AND DEI NOOING ACCESS TO ROBUST

3239
01:54:41,720 --> 01:54:42,200
COMMUNICATION.

3240
01:54:42,200 --> 01:54:43,840
WE NEED TO TALK ABOUT THE

3241
01:54:43,840 --> 01:54:45,680
SERVICES AND SUPPORTS PEOPLE

3242
01:54:45,680 --> 01:54:48,280
NEED AND MAY BENEFIT FROM.

3243
01:54:48,280 --> 01:54:50,000
IN THE LAST 18 POCKETS I

3244
01:54:50,000 --> 01:54:51,080
GRADUATED FROM BOSTON COLLEGE

3245
01:54:51,080 --> 01:54:53,200
WITH MY MASTERS IN EDUCATION AND

3246
01:54:53,200 --> 01:54:56,160
STARTED MY FIRST OFFICIAL JOB.

3247
01:54:56,160 --> 01:54:57,200
I HAVE BEEN FEATURED IN A

3248
01:54:57,200 --> 01:54:58,560
DOCUMENT CALLED, THIS IS NOT

3249
01:54:58,560 --> 01:54:59,480
ABOUT ME.

3250
01:54:59,480 --> 01:55:02,760
AND I COCREATED AND WAS FEATURED

3251
01:55:02,760 --> 01:55:05,440
IN, LISTEN, A SHORT FILM ABOUT

3252
01:55:05,440 --> 01:55:06,640
NON-SPEAKING AUTISTIC PEOPLE.

3253
01:55:06,640 --> 01:55:07,960
I SERVE ON THE BOARD OF

3254
01:55:07,960 --> 01:55:10,080
DIRECTORS OF THE NATIONAL CIVIL

3255
01:55:10,080 --> 01:55:10,520
RIGHTS ORGANIZATION

3256
01:55:10,520 --> 01:55:12,240
COMMUNICATION FIRST AND HAVE

3257
01:55:12,240 --> 01:55:13,880
KEYNOTED SEVERAL CONFERENCES.

3258
01:55:13,880 --> 01:55:15,840
I WAS APPOINTED BY PRESIDENT

3259
01:55:15,840 --> 01:55:17,280
BIDEN TO THE PRESIDENT'S

3260
01:55:17,280 --> 01:55:19,640
COMMITTEE FOR PEOPLE WITH

3261
01:55:19,640 --> 01:55:20,160
INTELLECTUAL DISABILITIES.

3262
01:55:20,160 --> 01:55:21,240
NONE OF THIS MEANS I DON'T NEED

3263
01:55:21,240 --> 01:55:24,080
AND RELY ON HIGH QUALITY SUPPORT

3264
01:55:24,080 --> 01:55:24,480
EACH DAY.

3265
01:55:24,480 --> 01:55:26,320
YET, NONE OF THESE ACTIVITIES

3266
01:55:26,320 --> 01:55:28,040
WOULD BE POSSIBLE IF I HADN'T

3267
01:55:28,040 --> 01:55:30,480
BEEN GIVEN ACCESS TO ROBUST

3268
01:55:30,480 --> 01:55:30,760
POLICY.

3269
01:55:30,760 --> 01:55:33,040
EVEN BE THOUGH I NOW HAVE ACCESS

3270
01:55:33,040 --> 01:55:34,760
TO -- MY VOICE STILL IS OFTEN

3271
01:55:34,760 --> 01:55:37,160
QUESTIONS OR DISREGARDED BY

3272
01:55:37,160 --> 01:55:37,480
PROFESSIONALS.

3273
01:55:37,480 --> 01:55:39,520
IN THE CONTEXT OF PLANNING THIS

3274
01:55:39,520 --> 01:55:41,560
VERY WEBINAR AS A FELLOW

3275
01:55:41,560 --> 01:55:42,440
COMMITTEE MEMBER, IT WAS

3276
01:55:42,440 --> 01:55:43,400
DIFFICULT FOR RESEARCHERS WHO

3277
01:55:43,400 --> 01:55:45,480
ARE EXPERTS ON PEOPLE LIKE ME,

3278
01:55:45,480 --> 01:55:47,560
TO MAKE SPACE FOR ME.

3279
01:55:47,560 --> 01:55:50,120
THIS IS WHY ACCESS TO THIS ALONE

3280
01:55:50,120 --> 01:55:51,520
IS NOT ENOUGH.

3281
01:55:51,520 --> 01:55:53,120
WHETHER YOU ARE RESEARCHERS OR

3282
01:55:53,120 --> 01:55:54,600
FAMILY MEMBERS, YOU MUST SUPPORT

3283
01:55:54,600 --> 01:55:56,920
OUR RIGHT TO COMMUNICATE ABOUT

3284
01:55:56,920 --> 01:55:57,880
OURSELVESES AND OUR NEEDS IN THE

3285
01:55:57,880 --> 01:56:08,120
WAYS THAT WORK BEST FOR US.

3286
01:56:08,120 --> 01:56:10,000
>>THANK YOU JORDYN FOR
THOSE

3287
01:56:10,000 --> 01:56:10,280
COMMENTS.

3288
01:56:10,280 --> 01:56:11,600
I'M SO HAPPY TO BE THE LUCKY

3289
01:56:11,600 --> 01:56:14,400
PERSON WHO GETS TO MODERATE THIS

3290
01:56:14,400 --> 01:56:17,200
CONVERSATION BETWEEN JORDYN AND

3291
01:56:17,200 --> 01:56:17,720
GRANT.

3292
01:56:17,720 --> 01:56:21,160
JORDYN, I SEE A LOT OF OVERLAP

3293
01:56:21,160 --> 01:56:22,480
WITH SOME OF THESE EXPERIENCES

3294
01:56:22,480 --> 01:56:24,680
AND POINTS THAT GRANT RAISED IN

3295
01:56:24,680 --> 01:56:25,280
HIS COMMENTS YESTERDAY.

3296
01:56:25,280 --> 01:56:27,520
BUT I WANT TO FIRST PICK UP ON

3297
01:56:27,520 --> 01:56:28,520
THAT POINT THAT YOU HAD AT THE

3298
01:56:28,520 --> 01:56:30,640
END OF YOUR PRESENTATION.

3299
01:56:30,640 --> 01:56:31,600
YOU MENTIONED THAT, AND I WANT

3300
01:56:31,600 --> 01:56:33,760
TO MAKE SURE I GET THE WORDS

3301
01:56:33,760 --> 01:56:33,960
RIGHT.

3302
01:56:33,960 --> 01:56:35,120
PLANNING THIS WEBINAR AS A

3303
01:56:35,120 --> 01:56:37,440
FELLOW COMMITTEE MEMBER IS

3304
01:56:37,440 --> 01:56:38,120
DIFFICULT FOR RESEARCHERS WHO

3305
01:56:38,120 --> 01:56:40,280
ARE EXPERTS ON PEOPLE LIKE ME TO

3306
01:56:40,280 --> 01:56:42,040
MAKE SPACE FOR ME ON ZOOM.

3307
01:56:42,040 --> 01:56:45,320
AND THIS REMINDED ME OF A POINT

3308
01:56:45,320 --> 01:56:46,440
THAT LEN MADE YESTERDAY THAT THE

3309
01:56:46,440 --> 01:56:48,200
EXPERTS ON THIS VERY TOPIC,

3310
01:56:48,200 --> 01:56:49,800
MIGHT NOT HAVE MUCH IN THE WAY

3311
01:56:49,800 --> 01:56:50,880
OF EXPERIENCE INTERACTING WITH

3312
01:56:50,880 --> 01:56:53,840
AND THINKING ABOUT HOW BEST TO

3313
01:56:53,840 --> 01:56:55,040
INCLUDE PEOPLE THEY ARE SUPPOSED

3314
01:56:55,040 --> 01:56:56,600
TO BE EXPERTS ON.

3315
01:56:56,600 --> 01:56:57,760
LET ME START WITH A QUESTION FOR

3316
01:56:57,760 --> 01:56:59,760
THE BOTH OF YOU WHICH IS, WHAT

3317
01:56:59,760 --> 01:57:02,760
ARE SOME WAYS THAT FUTURE

3318
01:57:02,760 --> 01:57:04,360
WORKSHOPS, CONFERENCES, WEBINARS

3319
01:57:04,360 --> 01:57:07,760
AND SPACES HOSTED BY NIH AND

3320
01:57:07,760 --> 01:57:10,560
OTHERS, COULD BE MADE MORE

3321
01:57:10,560 --> 01:57:13,520
ACCESSIBLE, WELCOMING AND

3322
01:57:13,520 --> 01:57:15,160
INCLUSIVE FOR AUTISTIC AAC

3323
01:57:15,160 --> 01:57:16,960
USERS?

3324
01:57:16,960 --> 01:57:26,120
JORDYN DO YOU WANT TO START?

3325
01:57:26,120 --> 01:57:36,680
>>JORDYN ZIMMERMAN.

3326
01:59:40,640 --> 01:59:40,920
>>SURE.

3327
01:59:40,920 --> 01:59:43,240
A LOT OF AGENCIES SUCH AS NIH

3328
01:59:43,240 --> 01:59:44,720
PUT UP BEAUTIFUL GUIDELINES FOR

3329
01:59:44,720 --> 01:59:45,680
HORSTING INCLUSIVE AND

3330
01:59:45,680 --> 01:59:47,280
ACCESSIBLE EVENTS.

3331
01:59:47,280 --> 01:59:49,000
I SUGGEST PROVIDING CONTENT IN

3332
01:59:49,000 --> 01:59:50,160
ADVANCE AND HAVING A SLOWER

3333
01:59:50,160 --> 01:59:51,320
STREAM OF SPEAKING.

3334
01:59:51,320 --> 01:59:53,520
TO ALLOW FOR MORE THINKING AND

3335
01:59:53,520 --> 01:59:56,320
ENGAGEMENT DURING THE DISCUSSION

3336
01:59:56,320 --> 01:59:56,560
PERIOD.

3337
01:59:56,560 --> 02:00:01,640
BREAKS ARE ALSO A GOOD IDEA TOO.

3338
02:00:01,640 --> 02:00:01,920
>>YES.

3339
02:00:01,920 --> 02:00:04,960
SOME OF US HAVE SLIPPING OUT BY

3340
02:00:04,960 --> 02:00:06,680
TURNING OFF OUR CAMERAS.

3341
02:00:06,680 --> 02:00:07,800
GRANTER, DO YOU HAVE SOME

3342
02:00:07,800 --> 02:00:09,080
THOUGHTS YOU WANT TO ADD TO

3343
02:00:09,080 --> 02:00:19,480
ACCESSIBILITY ISSUES?

3344
02:00:30,040 --> 02:00:40,640
>>SORRY WE HAVE A VOLUME
ISSUE.

3345
02:01:02,320 --> 02:01:12,760
>>GRANT BLASCO: I WILL
LET

3346
02:01:16,960 --> 02:01:18,480
ATTITUDES AND LISTENING ARE SO

3347
02:01:18,480 --> 02:01:18,760
IMPORTANT.

3348
02:01:18,760 --> 02:01:20,840
I ONLY AGREED TO PARTICIPATE

3349
02:01:20,840 --> 02:01:23,800
AFTER I GOT -- WITH THE

3350
02:01:23,800 --> 02:01:25,040
COORDINATORS.

3351
02:01:25,040 --> 02:01:26,640
AND ESTABLISHED A RELATIONSHIP

3352
02:01:26,640 --> 02:01:26,840
HELPS.

3353
02:01:26,840 --> 02:01:30,000
WITHOUT THESE ACCOMMODATIONS, WE

3354
02:01:30,000 --> 02:01:32,000
ARE AT A DISADVANTAGE.

3355
02:01:32,000 --> 02:01:33,560
WE LIMIT EXPOSURE TO THE MEETING

3356
02:01:33,560 --> 02:01:35,840
FORMAT AND WE HAVE NOT TIME TO

3357
02:01:35,840 --> 02:01:38,120
DIGEST THE SCIENCE WITHOUT

3358
02:01:38,120 --> 02:01:38,520
MATERIALS AHEAD.

3359
02:01:38,520 --> 02:01:40,560
IT TAKES LONGER TO TYPE SO IT IS

3360
02:01:40,560 --> 02:01:42,600
HIGHLY UNLIKELY WE WILL BE ABLE

3361
02:01:42,600 --> 02:01:45,120
TO TIMELY WITH THE CONVERSATION.

3362
02:01:45,120 --> 02:01:47,440
IT CREATES STRESS WHICH CAN LEAD

3363
02:01:47,440 --> 02:01:49,600
TO -- WHICH CAN ENFORCE THE IDEA

3364
02:01:49,600 --> 02:01:51,880
WE ARE NOT EQUIPPED TO

3365
02:01:51,880 --> 02:01:52,200
PARTICIPATE.

3366
02:01:52,200 --> 02:01:53,440
IF WE HAVE THE OPPORTUNITY TO

3367
02:01:53,440 --> 02:01:57,400
PLAN WELL, WE WOULD BE FINE.

3368
02:01:57,400 --> 02:01:58,520
>>YES, THANK YOU FOR
THAT.

3369
02:01:58,520 --> 02:02:01,440
I MEAN, ONE OF THE THINGS THAT

3370
02:02:01,440 --> 02:02:04,360
WAS BROUGHT UP YESTERDAY OF

3371
02:02:04,360 --> 02:02:06,760
COURSE IS THAT KIND OF

3372
02:02:06,760 --> 02:02:07,720
ACCOMMODATIONS THAT PEOPLE DEAL

3373
02:02:07,720 --> 02:02:08,920
WITH PROBABLY WOULD BE HELPFUL

3374
02:02:08,920 --> 02:02:11,320
TO ALL OF US TOO, MATERIALS IN

3375
02:02:11,320 --> 02:02:14,160
ADVANCE, TAKING A BREAK IN A

3376
02:02:14,160 --> 02:02:24,480
4-HOUR CONVERSATION.

3377
02:02:30,320 --> 02:02:40,760
>>ONE THING TO THAT AND
SAY I

3378
02:02:56,200 --> 02:03:06,640
WORK SO HARD TO BE SEEN AS --

3379
02:03:34,840 --> 02:03:45,240
AND I APPRECIATE THE TIME WE

3380
02:03:52,200 --> 02:03:56,400
HAVE BEEN GIVEN.

3381
02:03:56,400 --> 02:03:58,600
I WOULD ADD ONE THING TO THAT

3382
02:03:58,600 --> 02:04:05,360
AND SAY I

3383
02:04:05,360 --> 02:04:05,640
GIVEN.

3384
02:04:05,640 --> 02:04:06,400
>>THANKS, GRANT.

3385
02:04:06,400 --> 02:04:11,960
I'M GOING SKIP TO A QUESTION

3386
02:04:11,960 --> 02:04:15,080
STILL IN THE ACCESSIBILITY KIND

3387
02:04:15,080 --> 02:04:15,560
OF FRAME.

3388
02:04:15,560 --> 02:04:17,280
MY SENSE FOR MY CONVERSATIONS

3389
02:04:17,280 --> 02:04:20,040
WITH THE BOTH OF YOU AND SOME OF

3390
02:04:20,040 --> 02:04:22,160
THE THINGS YOU SHARED YESTERDAY

3391
02:04:22,160 --> 02:04:24,880
AND TODAY IS THAT PEOPLE MAY NOT

3392
02:04:24,880 --> 02:04:26,760
OR DO NOT, CANNOT, REALLY

3393
02:04:26,760 --> 02:04:28,160
APPRECIATE THE FACT THAT IN

3394
02:04:28,160 --> 02:04:30,360
ALMOST EVERY SETTING YOU FIND

3395
02:04:30,360 --> 02:04:33,760
YOURSELF IN, PARTICIPATION IS A

3396
02:04:33,760 --> 02:04:35,520
CHALLENGE FOR SOMEBODY WHO

3397
02:04:35,520 --> 02:04:36,880
COMMUNICATES USING AAC OR

3398
02:04:36,880 --> 02:04:38,880
SOMEBODY WHO DOESN'T YET HAVE A

3399
02:04:38,880 --> 02:04:40,240
WAY TO COMMUNICATE.

3400
02:04:40,240 --> 02:04:45,160
BOTH OF YOU HAVE SHARED THE

3401
02:04:45,160 --> 02:04:46,760
TRAUMA THAT LARK OF ACCESS TO

3402
02:04:46,760 --> 02:04:48,600
EFFECTIVE COMMUNICATION AND LACK

3403
02:04:48,600 --> 02:04:50,440
OF UNDERSTANDING BY, OF WHAT IS

3404
02:04:50,440 --> 02:04:53,000
NEEDED FOR SOMEBODY TO BE ABLE

3405
02:04:53,000 --> 02:04:55,680
TO COMMUNICATE, EFFECTIVELY,

3406
02:04:55,680 --> 02:04:55,920
CAUSES.

3407
02:04:55,920 --> 02:04:57,600
SO GRANT, YOU SAID YESTERDAY, IF

3408
02:04:57,600 --> 02:05:00,120
YOUR TRAUMA IS AROUND YOUR DAILY

3409
02:05:00,120 --> 02:05:02,000
INABILITY TO COMMUNICATE

3410
02:05:02,000 --> 02:05:05,040
COMBINED WITH ADD ATTITUDINAL

3411
02:05:05,040 --> 02:05:08,080
AND SYSTEMIC BARRIERS, THE

3412
02:05:08,080 --> 02:05:09,000
LIKELIHOOD OF BEING TRIGGERED

3413
02:05:09,000 --> 02:05:10,040
SAID HIGH.

3414
02:05:10,040 --> 02:05:13,520
WHICH TAKES A ENORMOUS TOLL ON

3415
02:05:13,520 --> 02:05:14,280
YOUR PHYSICAL, EMOTIONAL AND

3416
02:05:14,280 --> 02:05:14,840
MENTAL HEALTH.

3417
02:05:14,840 --> 02:05:16,960
AND JORDYN YOU MENTION THE YOUR

3418
02:05:16,960 --> 02:05:18,040
REMARKS IN YOUR DOCUMENTARY

3419
02:05:18,040 --> 02:05:19,600
ABOUT YOU THAT DESCRIBED SOME OF

3420
02:05:19,600 --> 02:05:22,760
THESE ISSUES THAT YOU HAVE THAT

3421
02:05:22,760 --> 02:05:23,720
IS LINKED FOR THE AUDIENCE

3422
02:05:23,720 --> 02:05:25,720
MEMBERS AND THE SPEAKER AGENDA

3423
02:05:25,720 --> 02:05:26,800
AT THE BOTTOM.

3424
02:05:26,800 --> 02:05:28,920
I WONDER IF IT'S NOT TOO

3425
02:05:28,920 --> 02:05:30,840
PERSONAL A QUESTION, MAYBE IF

3426
02:05:30,840 --> 02:05:32,200
YOU EACH COULD SHARE AN EXAMPLE

3427
02:05:32,200 --> 02:05:34,760
OR STORY TO ILLUSTRATE JUST HOW

3428
02:05:34,760 --> 02:05:37,880
SIGNIFICANT THIS ISSUE IS.

3429
02:05:37,880 --> 02:05:46,040
GRANT, DO YOU WANT TO START?

3430
02:05:46,040 --> 02:05:47,360
>>A PLASMODUIM
FALCIPARUM:

3431
02:05:47,360 --> 02:05:51,120
SURE, I HEARD A ELEC BEATURE

3432
02:05:51,120 --> 02:05:52,160
THAT TALKED ABOUT NAVIGATION.

3433
02:05:52,160 --> 02:05:54,320
I EXPLAINED THE DRIVE.

3434
02:05:54,320 --> 02:05:56,360
SORRY THE DEAL WITH DAYS PARITY

3435
02:05:56,360 --> 02:05:58,080
OF MY PERCEIVED OYST IDENTITY IN

3436
02:05:58,080 --> 02:05:59,480
DIFFERENT SPACES.

3437
02:05:59,480 --> 02:06:00,760
SKILLS TO REMAIN FLEXIBLE AND

3438
02:06:00,760 --> 02:06:03,720
REGULATED IN THE FACE OF

3439
02:06:03,720 --> 02:06:05,720
CONSTANT - AFTERNOON EXTENSIVE

3440
02:06:05,720 --> 02:06:06,880
AS YOU MIGHT IMAGINE.

3441
02:06:06,880 --> 02:06:09,760
FOR INSTANCE I WASES IN IAP

3442
02:06:09,760 --> 02:06:11,360
MEETINGS AS A METAL SCHOOL AGED

3443
02:06:11,360 --> 02:06:11,960
STUDENT WHERE ADULTS MIGHT BE

3444
02:06:11,960 --> 02:06:14,880
THERE TO TALK ABOUT MY DEFICITS.

3445
02:06:14,880 --> 02:06:17,880
THE PRESSURE WAS SO GREAT.

3446
02:06:17,880 --> 02:06:19,840
ONLY AFTER THEY WERE SATISFIED

3447
02:06:19,840 --> 02:06:21,400
WOULD I GET THAT GENERAL

3448
02:06:21,400 --> 02:06:22,400
EDUCATION.

3449
02:06:22,400 --> 02:06:24,040
NOW, I CAN NAVIGATE A METING

3450
02:06:24,040 --> 02:06:24,800
WITH A PROFESSOR WHERE I CAN

3451
02:06:24,800 --> 02:06:27,280
COME ACROSS AS A CREDIBLE

3452
02:06:27,280 --> 02:06:28,960
COLLEGE STUDENT.

3453
02:06:28,960 --> 02:06:30,400
THAT HELPS ME FEEL NORMAL EACH

3454
02:06:30,400 --> 02:06:33,080
THOUGH SUCCESSFUL MEETING TAKES

3455
02:06:33,080 --> 02:06:34,520
SO MUCH STAMINA AND FOCUS.

3456
02:06:34,520 --> 02:06:36,280
LATER I CAN WALK INTO A HOSPITAL

3457
02:06:36,280 --> 02:06:38,960
WHERE I AM OFFERED A HIGH-FIVE

3458
02:06:38,960 --> 02:06:40,960
BY MEDICAL ASSISTANT WHO DID NOT

3459
02:06:40,960 --> 02:06:43,320
READ MY CHART AND THEN

3460
02:06:43,320 --> 02:06:44,960
INSTANTLY -- I CAN WALK INTO A

3461
02:06:44,960 --> 02:06:46,680
RESTAURANT AND MOVE SLIGHTLY

3462
02:06:46,680 --> 02:06:48,000
DIFFERENTLY THAN OTHERS AND THE

3463
02:06:48,000 --> 02:06:50,400
RESULT WILL BE THAT I'M GIVEN A

3464
02:06:50,400 --> 02:06:53,840
PLASTIC CUP WHILE OTHER PEOPLE

3465
02:06:53,840 --> 02:06:54,360
GET GLASSWARE.

3466
02:06:54,360 --> 02:06:55,760
THE POINT IS I CANNOT CONTROL

3467
02:06:55,760 --> 02:06:57,720
OTHER PEOPLE'S IGNORANCE BUT I

3468
02:06:57,720 --> 02:07:00,960
STILL NEED TO DEAL WITH IT DAILY

3469
02:07:00,960 --> 02:07:02,840
DAILY.

3470
02:07:02,840 --> 02:07:03,200
>>RIGHT.

3471
02:07:03,200 --> 02:07:05,400
AND JORDYN?

3472
02:07:05,400 --> 02:07:06,400
YOU HAVE AN EXPERIENCE YOU'D

3473
02:07:06,400 --> 02:07:13,320
LIKE TO SHARE?

3474
02:07:13,320 --> 02:07:14,280
>>JORDYN ZIMMERMAN:
YES, A

3475
02:07:14,280 --> 02:07:17,200
LOT OF THIS IS ILLUSTRATED IN

3476
02:07:17,200 --> 02:07:18,160
THE FILM, HOW FAR, I CAN

3477
02:07:18,160 --> 02:07:20,920
DEFINITELY EXPAND MORE --

3478
02:07:20,920 --> 02:07:22,400
HEREAFTER.

3479
02:07:22,400 --> 02:07:24,720
THE DAILY -- GRANT DESCRIBES

3480
02:07:24,720 --> 02:07:25,000
VERY TRUE.

3481
02:07:25,000 --> 02:07:27,440
I GOT ACCESS TO ROBUST POLICY

3482
02:07:27,440 --> 02:07:30,560
WHEN I WAS 18 YEARS OLD.

3483
02:07:30,560 --> 02:07:31,080
UNFORTUNATELY, MY SPECIAL

3484
02:07:31,080 --> 02:07:33,320
EDUCATION TEACHER USED MY iPAD

3485
02:07:33,320 --> 02:07:35,040
TO TYPE IN CRUDE JOKES ABOUT MY

3486
02:07:35,040 --> 02:07:35,760
APPEARANCE AND THEN WOULD PLAY

3487
02:07:35,760 --> 02:07:37,600
THEM AS IF THEY WERE MY WORDS.

3488
02:07:37,600 --> 02:07:40,800
WHEN I WENT TO COLLEGE, MY WORTH

3489
02:07:40,800 --> 02:07:42,760
WAS CONSTANTLY QUESTIONED.

3490
02:07:42,760 --> 02:07:43,520
ALMOST DAILY, I WAS ASKED IF I

3491
02:07:43,520 --> 02:07:46,840
WAS REALLY A STUDENT ON CAMPUS.

3492
02:07:46,840 --> 02:07:49,800
EVEN NOW ON SOME DAYS, THE DAILY

3493
02:07:49,800 --> 02:07:50,800
BUILDUP BECOMES SO MUCH I'M

3494
02:07:50,800 --> 02:07:54,360
UNABLE TO STAY REGULATED IN ON

3495
02:07:54,360 --> 02:07:55,080
THOSE DAYS IT CAN BE DIFFICULT

3496
02:07:55,080 --> 02:07:56,600
TO COMMUNICATE MY NEEDS.

3497
02:07:56,600 --> 02:08:00,480
I GET INTO A SET WHERE I BANG MY

3498
02:08:00,480 --> 02:08:01,880
HEAD UNTIL IT'S BRUISED AND CUT.

3499
02:08:01,880 --> 02:08:04,080
I KNOW ON THOSE DAYS, PEOPLE ARE

3500
02:08:04,080 --> 02:08:09,080
QUESTIONING MY WORTH EVEN MORE.

3501
02:08:09,080 --> 02:08:10,640
>>ONE OF THE THINGS I
HAVE

3502
02:08:10,640 --> 02:08:13,080
LATER AS A QUESTION FOR YOU BOTH

3503
02:08:13,080 --> 02:08:18,360
HAS TO DO WITH WAYS IN WHICH WE

3504
02:08:18,360 --> 02:08:20,760
CAN, AS RESEARCHERS AND AS A

3505
02:08:20,760 --> 02:08:22,080
COMMUNITY, HELP TO POSSIBLY

3506
02:08:22,080 --> 02:08:23,960
REDUCE SOME OF THAT TRAUMA.

3507
02:08:23,960 --> 02:08:26,200
BUT BEFORE WE GET TO THAT POINT,

3508
02:08:26,200 --> 02:08:30,160
THESE ARE REALLY SERIOUS ISSUES

3509
02:08:30,160 --> 02:08:33,040
AND I KNOW THAT YOU BOTH ARE IN

3510
02:08:33,040 --> 02:08:36,040
THE PAST HAD TO DEAL WITH THESE

3511
02:08:36,040 --> 02:08:38,160
SERIOUS EFFECTS THESE HAD ON

3512
02:08:38,160 --> 02:08:39,880
YOUR PHYSICAL, MEANTAL AND

3513
02:08:39,880 --> 02:08:40,280
EMOTIONAL HEALTH.

3514
02:08:40,280 --> 02:08:43,160
BUT YOU ALSO SHARED WITH ME

3515
02:08:43,160 --> 02:08:44,720
HILARIOUS EXAMPLES IN RETROSPECT

3516
02:08:44,720 --> 02:08:46,400
OF WHERE PEOPLE DON'T KNOW HOW

3517
02:08:46,400 --> 02:08:48,720
TO PROCESS YOU OR THE WAY THAT

3518
02:08:48,720 --> 02:08:49,320
YOU COMMUNICATE.

3519
02:08:49,320 --> 02:08:52,560
NOW IN RETROSPECT YOU CAN LAUGH

3520
02:08:52,560 --> 02:08:53,680
ABOUT THEIR IG NOWHERES.

3521
02:08:53,680 --> 02:08:56,080
I WONDER IF YOU CAN SHARE AN

3522
02:08:56,080 --> 02:08:56,480
EXAMPLE OF THAT.

3523
02:08:56,480 --> 02:09:00,800
GRANT WHY DON'T YOU START?

3524
02:09:00,800 --> 02:09:11,320
>>GRANT BLASCO: I THINK I
CAN

3525
02:09:34,200 --> 02:09:44,560
PUT IT THE FIRST QUESTION.

3526
02:09:57,160 --> 02:10:07,280
[ TYPING ]

3527
02:10:59,240 --> 02:11:00,680
I THINK I CAN PREDICT THE FIRST

3528
02:11:00,680 --> 02:11:03,280
QUESTION I WILL GET AFTER ANY

3529
02:11:03,280 --> 02:11:03,960
PRESENTATION.

3530
02:11:03,960 --> 02:11:08,720
I KNOW WHAT ARE YOU USING?

3531
02:11:08,720 --> 02:11:12,560
>>SO, AFTER YOU'RE
AMAZING

3532
02:11:12,560 --> 02:11:13,160
CONTENT THE FIRST QUESTION IS,

3533
02:11:13,160 --> 02:11:23,560
WHAT APP ARE YOU USING?

3534
02:11:43,680 --> 02:11:47,200
>>THE TRUTH IS I DON'T
HEAR

3535
02:11:47,200 --> 02:11:57,600
ABOUT THE TECHNOLOGY.

3536
02:11:58,240 --> 02:12:08,320
[ TYPING ]

3537
02:12:41,280 --> 02:12:42,920
THE TRUTH IS I DON'T CARE ABOUT

3538
02:12:42,920 --> 02:12:44,320
THE TECHNOLOGY.

3539
02:12:44,320 --> 02:12:46,760
THERE IS TOO MUCH TO WORRY ABOUT

3540
02:12:46,760 --> 02:12:50,680
FOR SUCCESSFUL COMMUNICATION.

3541
02:12:50,680 --> 02:12:52,000
>>I'M GOING TO MOVE ON TO

3542
02:12:52,000 --> 02:12:55,000
ANOTHER QUESTION IN THE INTEREST

3543
02:12:55,000 --> 02:12:57,840
OF TIME.

3544
02:12:57,840 --> 02:13:02,080
BEATING OF YOU WORK TIRELESSLY

3545
02:13:02,080 --> 02:13:04,600
IN SPACES TO ADVOCATE ON BEHALF

3546
02:13:04,600 --> 02:13:06,640
OF NON-SPEAKING AUTISTIC FOLKS.

3547
02:13:06,640 --> 02:13:07,880
INCLUDING THOSE WHO DON'T YET

3548
02:13:07,880 --> 02:13:10,480
HAVE A CONVENTIONAL LANGUAGE

3549
02:13:10,480 --> 02:13:13,520
BASE WAY TO COMMUNICATE

3550
02:13:13,520 --> 02:13:13,800
EFFECTIVELY.

3551
02:13:13,800 --> 02:13:15,480
JORDYN, YOU MENTIONED THAT YOU

3552
02:13:15,480 --> 02:13:17,440
HAD A DIRECTOR OF PROFESSIONAL

3553
02:13:17,440 --> 02:13:18,640
DEVELOPMENT AND YOU'RE CHAIR OF

3554
02:13:18,640 --> 02:13:20,120
THE BOARD AT COMMUNICATION

3555
02:13:20,120 --> 02:13:20,440
FIRST.

3556
02:13:20,440 --> 02:13:22,040
AND GRANT IS ON THE

3557
02:13:22,040 --> 02:13:23,520
COMMUNICATION FIRST ADVISORY

3558
02:13:23,520 --> 02:13:26,200
BOARD AND A NUMBER OF NYU'S

3559
02:13:26,200 --> 02:13:29,200
ADVISORY BOARD FOR PROGRAM FOR

3560
02:13:29,200 --> 02:13:30,400
INCLUSION OF NEURODIVERSITY

3561
02:13:30,400 --> 02:13:30,680
EDUCATION.

3562
02:13:30,680 --> 02:13:31,200
THIS IS A HARD QUESTION.

3563
02:13:31,200 --> 02:13:33,440
BUT WHAT DO YOU SAY TO FOLKS WHO

3564
02:13:33,440 --> 02:13:34,920
MAY FEEL LIKE THE FACT THAT YOU

3565
02:13:34,920 --> 02:13:36,560
NOW HAVE ACCESS TO COMMUNICATION

3566
02:13:36,560 --> 02:13:39,040
AND YOU CAN ADVOCATE ON BEHALF

3567
02:13:39,040 --> 02:13:40,800
OF YOURSELF AND OTHERS, MEANS

3568
02:13:40,800 --> 02:13:42,760
THAT YOU DON'T UNDERSTAND THE

3569
02:13:42,760 --> 02:13:44,440
CHALLENGES THAT INDIVIDUALS WHO

3570
02:13:44,440 --> 02:13:46,480
STILL DON'T HAVE ACCESS TO

3571
02:13:46,480 --> 02:13:47,720
COMMUNICATION HAVE.

3572
02:13:47,720 --> 02:13:50,440
THAT MAYBE YOU DON'T OR HAVE

3573
02:13:50,440 --> 02:13:54,160
NEVER HAD SIGNIFICANT

3574
02:13:54,160 --> 02:13:56,160
CHALLENGES; ALLUDED TO SOME OF

3575
02:13:56,160 --> 02:13:56,600
THESE EARLIER.

3576
02:13:56,600 --> 02:13:58,760
DO YOU WANT TO EXPAND ON ANY OF

3577
02:13:58,760 --> 02:14:08,840
THEM?

3578
02:17:19,120 --> 02:17:29,240
[ TYPING ]

3579
02:17:59,680 --> 02:17:59,840
>>SURE.

3580
02:17:59,840 --> 02:18:01,600
IN THE DOCUMENTARY THAT WAS

3581
02:18:01,600 --> 02:18:02,360
PREVIOUSLY MENTIONED, THERE IS

3582
02:18:02,360 --> 02:18:04,480
IT A PROFESSIONAL THAT STARTS

3583
02:18:04,480 --> 02:18:05,560
OFF BY TALKERRING ABOUT HOW I

3584
02:18:05,560 --> 02:18:09,480
WAS ONE OF THE MOST QUOTE,

3585
02:18:09,480 --> 02:18:10,680
CHANNELING, UNQUOTE STUDENTS SHE

3586
02:18:10,680 --> 02:18:11,560
EVER WORKED.

3587
02:18:11,560 --> 02:18:13,320
AS SHARED DURING THE DISCUSSION

3588
02:18:13,320 --> 02:18:15,360
YESTERDAY, AUTISM IS A

3589
02:18:15,360 --> 02:18:16,760
DEVELOPMENTAL DISABILITY.

3590
02:18:16,760 --> 02:18:18,400
HOW I MAY PRESENT IN THIS MOMENT

3591
02:18:18,400 --> 02:18:20,280
OR HOW I PRESENT 10 YEARS AGO

3592
02:18:20,280 --> 02:18:23,480
DOES NOT DISMISS MY RIGHT TO

3593
02:18:23,480 --> 02:18:24,440
AUTONOMY THEN OR THE SUPPORT I

3594
02:18:24,440 --> 02:18:25,760
NEED TODAY.

3595
02:18:25,760 --> 02:18:31,040
WE MUST ALL WORK TOGETHER.

3596
02:18:31,040 --> 02:18:31,520
>>THANK YOU.

3597
02:18:31,520 --> 02:18:33,640
THAT'S A REALLY -- THE

3598
02:18:33,640 --> 02:18:37,000
DOCUMENTARY IS A REALLY POWERFUL

3599
02:18:37,000 --> 02:18:37,160
ONE.

3600
02:18:37,160 --> 02:18:38,600
WE ARE REALLY RUNNING OUT OF

3601
02:18:38,600 --> 02:18:40,440
TIME AND AS WE TALKED ABOUT

3602
02:18:40,440 --> 02:18:41,760
BEFORE, I WISH EVERYBODY COULD

3603
02:18:41,760 --> 02:18:43,760
HAVE BEEN A PART OF THE HOURS OF

3604
02:18:43,760 --> 02:18:44,480
CONVERSATIONS WE HAVE BEEN ABLE

3605
02:18:44,480 --> 02:18:45,880
TO HAVE OVER THE LAST COUPLE OF

3606
02:18:45,880 --> 02:18:47,320
WEEKS WITH CONNIE TOO.

3607
02:18:47,320 --> 02:18:49,560
SO I JUST WANT TO GIVE US MAYBE

3608
02:18:49,560 --> 02:18:51,560
ONE OR TWO MINUTES SO BOTH GRANT

3609
02:18:51,560 --> 02:18:53,160
AND JORDYN, YOU'LL HAVE TO KEEP

3610
02:18:53,160 --> 02:18:56,760
IT QUICK, BUT THE LAST QUESTION

3611
02:18:56,760 --> 02:18:59,800
JUST TO CLOSE THE LOOP REGARDING

3612
02:18:59,800 --> 02:19:01,360
COMMUNICATION INTERVENTION,

3613
02:19:01,360 --> 02:19:02,600
SPECIFICALLY, WHAT IS ONE

3614
02:19:02,600 --> 02:19:04,640
MESSAGE YOU WOULD LIKE TO LEAVE

3615
02:19:04,640 --> 02:19:07,480
THIS AUDIENCE OF THE NIDCD FOLKS

3616
02:19:07,480 --> 02:19:09,440
AND THE FOLKS LISTENING TO THE

3617
02:19:09,440 --> 02:19:10,760
WEBCAST WITH AS THEY ATTEMPT TO

3618
02:19:10,760 --> 02:19:12,240
SET THE AGENDA FOR THE NEXT 10

3619
02:19:12,240 --> 02:19:13,880
YEARS OF RESEARCH WITH

3620
02:19:13,880 --> 02:19:16,520
NON-SPEAKING OR MINIMALLY VERBAL

3621
02:19:16,520 --> 02:19:17,080
FOLKS.

3622
02:19:17,080 --> 02:19:23,800
GRANT DO YOU WANT TO START?

3623
02:19:23,800 --> 02:19:34,000
[ TYPING ]

3624
02:19:43,240 --> 02:19:45,440
I WANT TO SHARE A RESPONSE.

3625
02:19:45,440 --> 02:19:47,080
EVEN NOW I STRUGGLE TO GET OUT

3626
02:19:47,080 --> 02:19:49,080
EVERYTHING I WANT TO SAY AND I

3627
02:19:49,080 --> 02:19:50,880
PAIN TO GET OUT FOR OTHERS

3628
02:19:50,880 --> 02:19:52,320
BECAUSE I'M AWARE THE FAMILIES

3629
02:19:52,320 --> 02:19:54,000
ARE IN PAIN BUT THAT ALSO MAKES

3630
02:19:54,000 --> 02:19:55,320
ME A TARGET.

3631
02:19:55,320 --> 02:19:58,160
I HAVE SO MUCH TO LOSE SO WHY DO

3632
02:19:58,160 --> 02:19:59,000
I DO THIS?

3633
02:19:59,000 --> 02:20:01,320
SOME DAYS I DON'T KNOW.

3634
02:20:01,320 --> 02:20:02,480
UNDERSTAND MY FEELINGS OF BEING

3635
02:20:02,480 --> 02:20:03,880
ALONE WITH MY LACK OF

3636
02:20:03,880 --> 02:20:06,400
UNDERSTANDING OF MY DIAGNOSIS

3637
02:20:06,400 --> 02:20:08,960
AND MIGRAINE HEADACHES AND

3638
02:20:08,960 --> 02:20:09,600
INVOLVEMENTITTING AND SELF

3639
02:20:09,600 --> 02:20:10,720
INJURY.

3640
02:20:10,720 --> 02:20:12,760
I HAVE SEIZURES AND I GO DAYS

3641
02:20:12,760 --> 02:20:14,280
WITHOUT SLEEP DUE TO STRESS.

3642
02:20:14,280 --> 02:20:17,920
BEFORE I COULD COMMUNICATE, I

3643
02:20:17,920 --> 02:20:20,560
COPED MY -- GREAT AMOUNTS OF

3644
02:20:20,560 --> 02:20:21,680
NUDES IN THE PANTRY AND FRIDGE

3645
02:20:21,680 --> 02:20:22,800
DOWN DRAINS AND FLUSHED MOM'S

3646
02:20:22,800 --> 02:20:24,280
FAVORITE NECKLACE DOWN THE

3647
02:20:24,280 --> 02:20:24,520
TOILET.

3648
02:20:24,520 --> 02:20:26,520
I COULD GO ON.

3649
02:20:26,520 --> 02:20:28,200
THE MARK OF DIFFERENCE WAS BEING

3650
02:20:28,200 --> 02:20:30,600
EDUCATED ABOUT HOW AUTISM CAN

3651
02:20:30,600 --> 02:20:32,320
IMPACT SOMEONE AND LISTENING TO

3652
02:20:32,320 --> 02:20:33,640
OLDER AUTISTIC PEOPLE EXPLAIN

3653
02:20:33,640 --> 02:20:35,040
HOW THEY COPE.

3654
02:20:35,040 --> 02:20:37,080
I KNOW WE ARE ALL DIFFERENT.

3655
02:20:37,080 --> 02:20:39,280
WHEN I HEAR PARENTS EXPLAIN

3656
02:20:39,280 --> 02:20:40,680
THEIR CONCERN USED KIDS WORDS

3657
02:20:40,680 --> 02:20:42,600
OVER AND OVER REMINDED ME I DID

3658
02:20:42,600 --> 02:20:44,240
THE SAME THINGS BEFORE I HAD THE

3659
02:20:44,240 --> 02:20:46,200
INFORMATION THAT PUT ME IN A

3660
02:20:46,200 --> 02:20:47,840
PLACE OF SEEING LOGICAL.

3661
02:20:47,840 --> 02:20:50,200
I DON'T WANT ANYONE TO THINK I'M

3662
02:20:50,200 --> 02:20:52,320
SHAMING PARENTS.

3663
02:20:52,320 --> 02:20:53,920
BUT, I HAVE EXPERIENCED PAIN

3664
02:20:53,920 --> 02:20:54,160
TOO.

3665
02:20:54,160 --> 02:20:56,640
I HAVE FRIENDS WHO CANNOT STAND

3666
02:20:56,640 --> 02:20:58,480
SO THEIR HOMES WERE DARK AND I

3667
02:20:58,480 --> 02:21:01,600
WENT THROUGH A STAGE WHERE I HAD

3668
02:21:01,600 --> 02:21:02,520
TO UNPLUG EVERY ELECTRICAL

3669
02:21:02,520 --> 02:21:03,520
APPLIANCE AND LAUGH BECAUSE I

3670
02:21:03,520 --> 02:21:05,520
WAS HEAR THE BUZZING.

3671
02:21:05,520 --> 02:21:07,200
MY HOPE IS TO HELP OTHERS SO

3672
02:21:07,200 --> 02:21:08,880
MAYBE ONE PERSON CAN TALK ABOUT

3673
02:21:08,880 --> 02:21:10,360
AUTISM WITH A LOVED ONE AND FIND

3674
02:21:10,360 --> 02:21:11,080
SOME PEACE.

3675
02:21:11,080 --> 02:21:13,200
THAT IS MY HOPE BUT I KNOW I AM

3676
02:21:13,200 --> 02:21:15,000
NOT THE EXPERT OF PEOPLE I HAVE

3677
02:21:15,000 --> 02:21:16,200
NEVER MET.

3678
02:21:16,200 --> 02:21:17,320
JUST LIKE PEOPLE WHO HAVE NEVER

3679
02:21:17,320 --> 02:21:19,320
SPENT A DAY WITH ME DO NOT

3680
02:21:19,320 --> 02:21:20,880
UNDERSTAND HOW I OVERCOME SOME

3681
02:21:20,880 --> 02:21:23,600
ISSUES BUT I'M STILL WORKING ON

3682
02:21:23,600 --> 02:21:24,840
MANY TOO.

3683
02:21:24,840 --> 02:21:26,160
WE SHOULD HAVE EMP THY THEE FOR

3684
02:21:26,160 --> 02:21:27,160
EACH OTHER AND TRADE IDEAS

3685
02:21:27,160 --> 02:21:28,320
BECAUSE THIS STUFF IS NOT EASY

3686
02:21:28,320 --> 02:21:34,240
FOR ANY OF US.

3687
02:21:34,240 --> 02:21:37,400
>>WOW, THANK YOU, GRANT.

3688
02:21:37,400 --> 02:21:39,160
JORDYN, LAST COMMENT FOR THE

3689
02:21:39,160 --> 02:21:39,360
GROUP.

3690
02:21:39,360 --> 02:21:40,520
AND OF COURSE BOTH OF YOU WILL

3691
02:21:40,520 --> 02:21:42,560
HAVE THE OPPORTUNITY TO

3692
02:21:42,560 --> 02:21:43,680
PARTICIPATE IN THE DISCUSSION AS

3693
02:21:43,680 --> 02:21:48,040
WE ALL WILL; WHICH IS HAPPENING

3694
02:21:48,040 --> 02:21:58,200
SHORTLY.

3695
02:24:36,160 --> 02:24:36,600
>>DYNAMIC HUMANS.

3696
02:24:36,600 --> 02:24:39,840
COME OUT OF YOUR LABS.

3697
02:24:39,840 --> 02:24:44,160
WE CAN ATAFT TO FULLNESS AS

3698
02:24:44,160 --> 02:24:44,760
PEOPLE.

3699
02:24:44,760 --> 02:24:47,600
-- ATTEST TO OUR FULLNESS AS

3700
02:24:47,600 --> 02:24:47,840
PEOPLE.

3701
02:24:47,840 --> 02:24:50,680
>>THANK YOU BOTH FOR A

3702
02:24:50,680 --> 02:24:52,800
FANTASTIC END OF THE FULL

3703
02:24:52,800 --> 02:24:54,760
DISCUSSION OF OUR -- OR

3704
02:24:54,760 --> 02:24:56,040
PRESENTATIONS AND I'LL TURN BACK

3705
02:24:56,040 --> 02:24:58,520
OVER TO CONY AND HELEN AND

3706
02:24:58,520 --> 02:25:00,360
JUDITH FOR THE FINAL DISCUSSION.

3707
02:25:00,360 --> 02:25:09,000
THANK YOU AGAIN GRANT AND JORDYN

3708
02:25:09,000 --> 02:25:09,720
JORDYN.

3709
02:25:09,720 --> 02:25:11,800
>>CONNIE KASARI: I CAN

3710
02:25:11,800 --> 02:25:13,800
DEFINITELY ATOAST YOUR FULLNESS,

3711
02:25:13,800 --> 02:25:14,440
JORDYN.

3712
02:25:14,440 --> 02:25:16,160
I WILL SAY I SPENT A FEW HOURS

3713
02:25:16,160 --> 02:25:19,760
WITH JORDYN AND WITH GRANT AND

3714
02:25:19,760 --> 02:25:22,320
WITH VICK RAM OVER THE LAST FEW

3715
02:25:22,320 --> 02:25:22,640
WEEKS.

3716
02:25:22,640 --> 02:25:23,760
AND I WOULD SAY, AND YOU CAN

3717
02:25:23,760 --> 02:25:25,280
CORRECT ME IF I'M WRONG, BUT I

3718
02:25:25,280 --> 02:25:29,320
THINK SOME OF THE QUESTIONS YOU

3719
02:25:29,320 --> 02:25:31,160
COULD PREPARE BEFOREHAND, RIGHT,

3720
02:25:31,160 --> 02:25:32,280
GRANT AND JORDYN?

3721
02:25:32,280 --> 02:25:36,240
SO THAT'S WHY WE HAD THESE LONG

3722
02:25:36,240 --> 02:25:37,240
STRINGS OF PRODUCTION.

3723
02:25:37,240 --> 02:25:41,680
AND IN OTHER TIMES YOU WERE

3724
02:25:41,680 --> 02:25:43,080
RESPONDING IN REALTIME.

3725
02:25:43,080 --> 02:25:45,480
AND I KNOW THAT WHEN WE HAD OUR

3726
02:25:45,480 --> 02:25:47,320
CONVERSATIONS, IT WAS ALL IN

3727
02:25:47,320 --> 02:25:47,600
REALTIME.

3728
02:25:47,600 --> 02:25:49,840
SO I CAN DEFINITELY ATTEST TO

3729
02:25:49,840 --> 02:25:52,080
NOT ONLY THE FULLNESS OF YOU AS

3730
02:25:52,080 --> 02:25:53,600
HUMANS BUT ALSO YOUR SENSE OF

3731
02:25:53,600 --> 02:25:53,800
HUMOR.

3732
02:25:53,800 --> 02:25:57,680
YOU BOTH ARE VERY, VERY -- YOU

3733
02:25:57,680 --> 02:25:59,360
BOTH HAVE A GREAT SENSE OF

3734
02:25:59,360 --> 02:25:59,640
HUMOR.

3735
02:25:59,640 --> 02:26:00,720
AND I REALLY APPRECIATED THAT.

3736
02:26:00,720 --> 02:26:04,480
AND YOU ALSO KNOW THAT I'VE

3737
02:26:04,480 --> 02:26:05,920
WORKED MOSTLY WITH MINIMALLY

3738
02:26:05,920 --> 02:26:07,560
VERBAL CHILDREN WHO GROW UP.

3739
02:26:07,560 --> 02:26:08,920
AND WE DON'T ALWAYS AS

3740
02:26:08,920 --> 02:26:10,640
RESEARCHERS GET TO FOLLOW PEOPLE

3741
02:26:10,640 --> 02:26:13,080
UP INTO ADULTHOOD.

3742
02:26:13,080 --> 02:26:15,000
IT'S A REAL DISADVANTAGE TO US

3743
02:26:15,000 --> 02:26:18,200
TO SEE HOW SOME OF OUR MINIMALLY

3744
02:26:18,200 --> 02:26:19,720
VERBAL YOUNG CHILDREN GROW UP TO

3745
02:26:19,720 --> 02:26:20,040
BE ADULTS.

3746
02:26:20,040 --> 02:26:22,200
I HAVE A COUPLE OF KIDS THAT

3747
02:26:22,200 --> 02:26:25,120
WERE IN STUDIES THAT ARE NOW IN

3748
02:26:25,120 --> 02:26:27,080
COLLEGE, LIKE YOU GUYS.

3749
02:26:27,080 --> 02:26:31,920
AND OTHERS THAT HAVE REALLY

3750
02:26:31,920 --> 02:26:34,160
SIGNIFICANT NEEDS.

3751
02:26:34,160 --> 02:26:35,840
AND AROUND THE CLOCK THEY NEED

3752
02:26:35,840 --> 02:26:36,080
CARE.

3753
02:26:36,080 --> 02:26:37,920
SO THERE IS THAT HETEROGENEITY.

3754
02:26:37,920 --> 02:26:40,600
AND I THINK WE HAD A REALLY RICH

3755
02:26:40,600 --> 02:26:44,680
DISCUSSION FROM BOTH OUR PARENTS

3756
02:26:44,680 --> 02:26:46,800
AND OUR INDIVIDUALS WHO ARE

3757
02:26:46,800 --> 02:26:47,760
INDEPENDENT TYPERS.

3758
02:26:47,760 --> 02:26:49,280
AND YOU GUYS, I HAVE TO SAY,

3759
02:26:49,280 --> 02:26:53,720
YOU'RE AMAZING AND I AM IN AWE

3760
02:26:53,720 --> 02:26:55,520
OF YOUR COURAGE AND EFFORTFUL

3761
02:26:55,520 --> 02:26:57,960
CONTROL THAT IT TAKES TO DO WHAT

3762
02:26:57,960 --> 02:26:59,040
YOU DO EVERY DAY.

3763
02:26:59,040 --> 02:27:01,040
AND IN FACT, A QUESTION I HAVE

3764
02:27:01,040 --> 02:27:03,480
FOR YOU IS, MY GOODNESS, HOW DO

3765
02:27:03,480 --> 02:27:05,240
YOU -- WHAT IS YOUR WORKDAY

3766
02:27:05,240 --> 02:27:06,480
LIKE, JORDYN?

3767
02:27:06,480 --> 02:27:08,520
I MEAN WE ARE SITTING HERE IN

3768
02:27:08,520 --> 02:27:10,720
THIS ZOOM CONTEXT WITH NO BREAKS

3769
02:27:10,720 --> 02:27:12,680
FOR 4 HOURS AND I'M EXHAUSTED.

3770
02:27:12,680 --> 02:27:15,600
I HAVE TAKE A NAP AFTERWARDS.

3771
02:27:15,600 --> 02:27:18,480
SO I CAN'T IMAGINE DOG THIS KIND

3772
02:27:18,480 --> 02:27:19,680
OF WORK THAT YOU DO -- DOING

3773
02:27:19,680 --> 02:27:20,600
THIS KIND OF WORK THAT YOU DO

3774
02:27:20,600 --> 02:27:22,000
AND WORKING A FULL DAY.

3775
02:27:22,000 --> 02:27:24,800
I DON'T THINK I CAN DO IT.

3776
02:27:24,800 --> 02:27:28,240
HOW DOES THAT WORK FEDERAL YOU?

3777
02:27:28,240 --> 02:27:38,720
HOW DOES THAT WORK FOR YOU?

3778
02:29:22,480 --> 02:29:32,800
>>JORDYN YOU'RE MUTEED.

3779
02:29:35,200 --> 02:29:41,560
>>I THINK SHE IS STILL
MUTED.

3780
02:29:41,560 --> 02:29:43,440
THERE WE GO.

3781
02:29:43,440 --> 02:29:45,240
>>I DON'T HAVE FOUR HOUR

3782
02:29:45,240 --> 02:29:45,560
MEETINGS.

3783
02:29:45,560 --> 02:29:48,840
EVEN YOUR DOG WAS BARKING IN

3784
02:29:48,840 --> 02:29:50,040
DISAGREEMENT ABOUT THIS

3785
02:29:50,040 --> 02:29:50,440
YESTERDAY.

3786
02:29:50,440 --> 02:29:51,120
[ LAUGHS ]

3787
02:29:51,120 --> 02:29:52,840
>>LIKE I SAID, THEY HAVE
A

3788
02:29:52,840 --> 02:29:56,280
GREAT SENSE OF HUMOR!

3789
02:29:56,280 --> 02:29:57,840
YES, IN FACT JORDYN DID ASK ME

3790
02:29:57,840 --> 02:30:01,360
WHAT KIND OF DOG I HAD BECAUSE

3791
02:30:01,360 --> 02:30:03,560
SOMEHOW SYBIL POPPED UP INTO THE

3792
02:30:03,560 --> 02:30:03,760
VIEW.

3793
02:30:03,760 --> 02:30:06,040
AND THEN GRANT, I KNOW THAT

3794
02:30:06,040 --> 02:30:08,480
YOU'RE A COLLEGE STUDENT AND YOU

3795
02:30:08,480 --> 02:30:10,480
KNOW, I'M TEACHING AN

3796
02:30:10,480 --> 02:30:11,320
UNDERGRADUATE CLASS RIGHT NOW

3797
02:30:11,320 --> 02:30:14,240
THAT STARTS AT 8 A.M. AND HAS TO

3798
02:30:14,240 --> 02:30:14,560
BE IN-PERSON.

3799
02:30:14,560 --> 02:30:16,240
AND I DON'T TAKE ATTENDANCE.

3800
02:30:16,240 --> 02:30:18,760
SO FIRST DAY EVERYONE WAS THERE.

3801
02:30:18,760 --> 02:30:22,600
OVER 100 STUDENTS.

3802
02:30:22,600 --> 02:30:23,600
SECOND TIME, HALF BECAUSE 8 A.M.

3803
02:30:23,600 --> 02:30:25,720
IS WAY TOO EARLY.

3804
02:30:25,720 --> 02:30:28,000
SO MY QUESTION TO YOU IS, DO YOU

3805
02:30:28,000 --> 02:30:30,520
HAVE TO GO TO CLASS IN-PERSON OR

3806
02:30:30,520 --> 02:30:33,680
ARE YOU ON LINE?

3807
02:30:33,680 --> 02:30:34,760
ONLINE IS SO MUCH EASIER BUT I

3808
02:30:34,760 --> 02:30:42,720
DON'T KNOW WHAT YOU DO.

3809
02:30:42,720 --> 02:30:52,880
[ TYPING ]

3810
02:30:58,520 --> 02:31:09,000
I DO BOTH AND I PREFER IN-PERSON

3811
02:31:19,520 --> 02:31:29,960
BECAUSE I WANT TO BE A PART OF

3812
02:31:34,640 --> 02:31:45,000
THE ACTIVITIES OF REGULAR

3813
02:31:58,840 --> 02:32:02,840
STUDENTS.

3814
02:32:02,840 --> 02:32:03,560
>>THAT'S GREAT.

3815
02:32:03,560 --> 02:32:05,680
YOU WOULD GET AN A IN MY CLASS.

3816
02:32:05,680 --> 02:32:08,520
I CAN SEE YOU DOING GREAT AND I

3817
02:32:08,520 --> 02:32:10,760
WOULD LOVE TO HAVE YOU.

3818
02:32:10,760 --> 02:32:15,320
LET'S SEE, DO WE HAVE ANY

3819
02:32:15,320 --> 02:32:17,640
QUESTIONS FROM JUDITH FROM OUR

3820
02:32:17,640 --> 02:32:18,920
PARTICIPANTS BEFORE WE MOVE

3821
02:32:18,920 --> 02:32:21,800
TO -- NEXT SESSION WHERE I'M

3822
02:32:21,800 --> 02:32:23,040
HOPING THAT JEERED IN AND GRANT

3823
02:32:23,040 --> 02:32:24,960
CAN PARTICIPATE -- OR MAYBE YOU

3824
02:32:24,960 --> 02:32:26,760
GUYS HAVE SOMETHING YOU WANT TO

3825
02:32:26,760 --> 02:32:36,480
ADD, JORDYN AND GRANT?

3826
02:32:36,480 --> 02:32:38,240
YES, THEY DO.

3827
02:32:38,240 --> 02:32:48,760
>>GRANT BLASCO: NO
THANKS.

3828
02:32:57,000 --> 02:33:00,400
>>JORDYN: ME EITHER.

3829
02:33:00,400 --> 02:33:01,960
>>CONNIE KASARI: OKAY,
WELL

3830
02:33:01,960 --> 02:33:02,160
GREAT.

3831
02:33:02,160 --> 02:33:04,120
WHAT WE WERE GOING TO DO --

3832
02:33:04,120 --> 02:33:05,600
HELEN HAS SOMETHING.

3833
02:33:05,600 --> 02:33:06,320
>>A FLORIDA'S FLORIDA'S:
I WANT

3834
02:33:06,320 --> 02:33:10,560
TO MAKE A COMMENT HERE: HELEN

3835
02:33:10,560 --> 02:33:13,080
TAGER-FLUSBERG -- I REALLY

3836
02:33:13,080 --> 02:33:15,000
ADMIRE YOUR COURAGE JORDYN AND

3837
02:33:15,000 --> 02:33:15,400
GRANT.

3838
02:33:15,400 --> 02:33:18,720
IT ISN'T EASY TO PUT YOURSELF

3839
02:33:18,720 --> 02:33:20,920
OUT THERE THE WAY YOU DO.

3840
02:33:20,920 --> 02:33:22,720
YOU HAVE IN THE PAST AND YOU ARE

3841
02:33:22,720 --> 02:33:25,200
HERE AND I REALLY APPRECIATE

3842
02:33:25,200 --> 02:33:25,480
THAT.

3843
02:33:25,480 --> 02:33:29,800
I ALSO WANT TO SAY, OBVIOUSLY

3844
02:33:29,800 --> 02:33:32,880
YOUR LANGUAGE AND COMMUNICATION

3845
02:33:32,880 --> 02:33:36,400
SKILLS ARE WHAT WE ASPIRE TO FOR

3846
02:33:36,400 --> 02:33:40,040
THE MINIMALLY VERBAL AND

3847
02:33:40,040 --> 02:33:41,520
NON-SPEAKING POPULATION.

3848
02:33:41,520 --> 02:33:44,160
YOU ARE ABLE TO COMMUNICATE.

3849
02:33:44,160 --> 02:33:47,600
AND WE KNOW THAT FOR MOST

3850
02:33:47,600 --> 02:33:49,680
INDIVIDUALS, THEY ARE NOT GOING

3851
02:33:49,680 --> 02:33:52,480
TO BE ABLE TO REACH YOUR

3852
02:33:52,480 --> 02:33:54,000
ASPIRATIONAL STATUS.

3853
02:33:54,000 --> 02:33:56,360
AT THE SAME TIME, I THINK WHAT I

3854
02:33:56,360 --> 02:34:02,000
HAVE TAKEN AWAY FROM THIS

3855
02:34:02,000 --> 02:34:04,200
AFTERNOON IS, YES YOU HAVE THAT

3856
02:34:04,200 --> 02:34:07,280
CAPACITY BUT LOOK AT HOW HARD IT

3857
02:34:07,280 --> 02:34:07,840
IS.

3858
02:34:07,840 --> 02:34:10,480
IT IS STILL SUCH A CHALLENGE.

3859
02:34:10,480 --> 02:34:12,880
AND I THINK YESTERDAY WE TALKED

3860
02:34:12,880 --> 02:34:16,280
ABOUT THE NEEDS TO HAVE

3861
02:34:16,280 --> 02:34:18,360
TECHNOLOGIES THAT WOULD CHANGE

3862
02:34:18,360 --> 02:34:21,720
SO MANY OF THE FEATURES OF YOUR

3863
02:34:21,720 --> 02:34:24,600
COMMUNICATION, TO MAKE IT

3864
02:34:24,600 --> 02:34:27,280
FASTER, TO MAKE IT MORE

3865
02:34:27,280 --> 02:34:29,040
EXPRESSIVE AND MORE, YES YOUR

3866
02:34:29,040 --> 02:34:31,640
FIRST VOICE, BUT LET IT BE YOUR

3867
02:34:31,640 --> 02:34:32,760
OWN VOICE.

3868
02:34:32,760 --> 02:34:35,000
AND HOW ARE WE GOING TO BE ABLE

3869
02:34:35,000 --> 02:34:36,240
TO GET THERE?

3870
02:34:36,240 --> 02:34:38,120
SO I THINK YOU HAVE HIGHLIGHTED

3871
02:34:38,120 --> 02:34:41,920
BOTH WHAT WE CAN ASPIRE TO AND

3872
02:34:41,920 --> 02:34:45,200
ALSO WHAT WE NEED TO BE DOING AS

3873
02:34:45,200 --> 02:34:51,480
A FIELD TO IN FACT, REALLY ALLOW

3874
02:34:51,480 --> 02:34:55,040
YOU TO COMMUNICATE IN WAYS THAT

3875
02:34:55,040 --> 02:34:58,160
I KNOW YOU WISH TO DO.

3876
02:34:58,160 --> 02:35:00,440
AND THE STRESS AND THE TRAUMA

3877
02:35:00,440 --> 02:35:03,160
THAT YOU TALK ABOUT, I THINK

3878
02:35:03,160 --> 02:35:06,160
IT'S VERY EVIDENT TO ME TODAY,

3879
02:35:06,160 --> 02:35:09,840
WATCHING YOU, THAT LISTENING TO

3880
02:35:09,840 --> 02:35:12,720
YOU, WHY EACH THOUGH YOU CAN

3881
02:35:12,720 --> 02:35:15,080
COMMUNICATE, THE STRESS IS JUST

3882
02:35:15,080 --> 02:35:16,680
STILL SO ENORMOUS.

3883
02:35:16,680 --> 02:35:18,760
IT MUST BE COMPOUNDED IN

3884
02:35:18,760 --> 02:35:19,640
EVERYDAY LIFE.

3885
02:35:19,640 --> 02:35:22,600
SO I REALLY JUST WANT TO THANK

3886
02:35:22,600 --> 02:35:28,640
YOU FOR SHOWING ME AN ASPECT OF

3887
02:35:28,640 --> 02:35:30,720
WHERE WE WANT TO BE THAT I

3888
02:35:30,720 --> 02:35:33,760
HADN'T REALLY THOUGHT SO MUCH

3889
02:35:33,760 --> 02:35:39,960
ABOUT BEFOREHAND.

3890
02:35:39,960 --> 02:35:41,000
>>JUDITH COOPER: THANK
YOU

3891
02:35:41,000 --> 02:35:42,800
CONNIE AND JORDYN AND GRANT.

3892
02:35:42,800 --> 02:35:46,160
WHAT A WONDERFUL PART OF THE

3893
02:35:46,160 --> 02:35:47,360
AFTERNOON.

3894
02:35:47,360 --> 02:35:49,680
SO, WE ARE MOVING NOW INTO WHAT

3895
02:35:49,680 --> 02:35:52,040
IS NEXT, NEXT STEPS.

3896
02:35:52,040 --> 02:35:55,040
DO NOT EXPECT THAT CONNIE AND

3897
02:35:55,040 --> 02:35:56,760
HELEN AND I ARE GOING TO DO A

3898
02:35:56,760 --> 02:35:58,640
SUMMARY OF WHAT WE HAVE LEARNED

3899
02:35:58,640 --> 02:35:59,680
OVER THESE TWO DAYS.

3900
02:35:59,680 --> 02:36:01,320
I WILL SAY THAT WHAT WE WANT TO

3901
02:36:01,320 --> 02:36:04,720
HEAR FROM YOU IS, WE HAVE HEARD

3902
02:36:04,720 --> 02:36:09,000
A COUPLE OF THEMES, OKAY?

3903
02:36:09,000 --> 02:36:09,520
PARTICIPATORY RESEARCH.

3904
02:36:09,520 --> 02:36:13,440
A LOT OF PEOPLE TALKED ABOUT

3905
02:36:13,440 --> 02:36:13,640
THAT.

3906
02:36:13,640 --> 02:36:15,720
TECHNOLOGY, CHANGES IN

3907
02:36:15,720 --> 02:36:17,320
TECHNOLOGY.

3908
02:36:17,320 --> 02:36:19,560
NON-TECHNOLOGICAL APPROACHES FOR

3909
02:36:19,560 --> 02:36:20,080
MINIMALLY VERBAL.

3910
02:36:20,080 --> 02:36:22,880
AND THEN THE HETEROGENEITY

3911
02:36:22,880 --> 02:36:23,440
ISSUE.

3912
02:36:23,440 --> 02:36:26,560
RECOGNIZING THAT WE ARE NOT THE

3913
02:36:26,560 --> 02:36:27,160
MONLITHE THAT JOHN MENTIONED

3914
02:36:27,160 --> 02:36:27,440
YESTERDAY.

3915
02:36:27,440 --> 02:36:30,280
SO I'M GOING TO ASK EVERYBODY TO

3916
02:36:30,280 --> 02:36:34,760
TURN THEIR CAM RAGS ON SO WE CAN

3917
02:36:34,760 --> 02:36:36,760
SEE EVERYONE -- CAMERAS ON SO WE

3918
02:36:36,760 --> 02:36:39,640
CAN SEE EVERYONE TO RAISE THEIR

3919
02:36:39,640 --> 02:36:41,760
HANDS TO MAKE COMMENTS AND

3920
02:36:41,760 --> 02:36:43,480
SUGGESTIONS ABOUT OTHER THEMES

3921
02:36:43,480 --> 02:36:44,600
THAT YOU WOULD LIKE THOSE OF US

3922
02:36:44,600 --> 02:36:48,960
WHO ARE LISTENING TO PAY

3923
02:36:48,960 --> 02:36:50,240
ATTENTION.

3924
02:36:50,240 --> 02:36:52,440
WE HAVE GOT BOTH YOU FOLKS ON

3925
02:36:52,440 --> 02:36:55,240
THE SCREEN AND THEN THOSE ON THE

3926
02:36:55,240 --> 02:36:59,960
WEBINAR WHO CAN AND HAVE BEEN

3927
02:36:59,960 --> 02:37:04,000
SENDING FORTH COMMENTS.

3928
02:37:04,000 --> 02:37:05,480
SO I THINK WE'LL -- CONNIE AND

3929
02:37:05,480 --> 02:37:09,000
HELEN AND I WILL JUST SHARE

3930
02:37:09,000 --> 02:37:10,640
CALLING ON FOLKS BUT WE'LL WAIT

3931
02:37:10,640 --> 02:37:20,520
TO SEE WHO RAISES THEIR HAND.

3932
02:37:20,520 --> 02:37:22,600
>>I ASSUMED WE WERE GOING

3933
02:37:22,600 --> 02:37:22,960
ALPHABETICALLY.

3934
02:37:22,960 --> 02:37:26,240
SO I WANT TO JUST MAYBE MAKE TWO

3935
02:37:26,240 --> 02:37:26,560
COMMENTS.

3936
02:37:26,560 --> 02:37:30,040
ONE IS IN REFERENCE TO LARRY'S

3937
02:37:30,040 --> 02:37:31,440
EXCELLENT PRESENTATION ABOUT THE

3938
02:37:31,440 --> 02:37:34,600
NEED FOR MULTIMODAL

3939
02:37:34,600 --> 02:37:36,240
INTERVENTIONS.

3940
02:37:36,240 --> 02:37:38,280
OR MULTICOMPONENT INTERVENTIONS.

3941
02:37:38,280 --> 02:37:40,200
AND I WANT TO MENTION A COUPLE

3942
02:37:40,200 --> 02:37:41,560
OF OTHER BENEFITS BECAUSE I

3943
02:37:41,560 --> 02:37:43,000
THINK THIS IS THE WAY TO GO IN

3944
02:37:43,000 --> 02:37:44,000
THE FUTURE.

3945
02:37:44,000 --> 02:37:46,200
RECOGNIZING THAT THESE ARE

3946
02:37:46,200 --> 02:37:47,160
EXPENSIVE INTERVENTIONS TO DO

3947
02:37:47,160 --> 02:37:48,600
BUT I THINK THEY REALLY NEED TO

3948
02:37:48,600 --> 02:37:49,680
BE DONE.

3949
02:37:49,680 --> 02:37:52,360
IN MY OWN FIELD, WE HAVE DONE A

3950
02:37:52,360 --> 02:37:55,600
MULTIMODAL INTERVENTIONS FOR

3951
02:37:55,600 --> 02:37:57,560
INDIVIDUALS WHO HAVE FRAGILE X

3952
02:37:57,560 --> 02:38:00,200
SYNDROME AS ONE EXAMPLE AND WE

3953
02:38:00,200 --> 02:38:02,000
COMBINED MEDICATIONS WITH PARENT

3954
02:38:02,000 --> 02:38:03,160
IMPLEMENTED INTERVENTIONS.

3955
02:38:03,160 --> 02:38:05,280
THE TWO THINGS I WANT TO ADD TO

3956
02:38:05,280 --> 02:38:06,440
LARRY'S EXCELLENT POINTS ARE,

3957
02:38:06,440 --> 02:38:08,840
THAT THERE REALLY IS A CHALLENGE

3958
02:38:08,840 --> 02:38:10,200
IN THE TYPICAL DRUG TRIAL WHERE

3959
02:38:10,200 --> 02:38:12,480
YOU HAVE A PLACEBO CONDITION.

3960
02:38:12,480 --> 02:38:14,480
SO FAMILIES COME TO THIS AND NO

3961
02:38:14,480 --> 02:38:17,520
ONE WANTS TO BE IN THE PLACEBO.

3962
02:38:17,520 --> 02:38:17,720
RIGHT?

3963
02:38:17,720 --> 02:38:19,320
EVERYONE WANTS TO BENEFIT FROM

3964
02:38:19,320 --> 02:38:20,920
THE MEDICATION.

3965
02:38:20,920 --> 02:38:23,400
AND I THINK THAT THERE IS A COST

3966
02:38:23,400 --> 02:38:25,560
TO FAMILIES IF THEY DON'T GET

3967
02:38:25,560 --> 02:38:25,920
ANY TREATMENT.

3968
02:38:25,920 --> 02:38:30,120
THAT IS IN TERMS OF TIME,

3969
02:38:30,120 --> 02:38:31,560
EFFORT, HOPE AS WELL AS THE FACT

3970
02:38:31,560 --> 02:38:33,720
THAT OFTEN THEY HAVE TO STOP

3971
02:38:33,720 --> 02:38:34,360
OTHER MEDICATIONS AND THINGS

3972
02:38:34,360 --> 02:38:36,880
LIKE THAT.

3973
02:38:36,880 --> 02:38:38,240
AND SO I THINK HAVING AN

3974
02:38:38,240 --> 02:38:39,920
ALTERNATIVE TO THE TRADITIONAL

3975
02:38:39,920 --> 02:38:41,520
PLACEBO BEING TO GET A

3976
02:38:41,520 --> 02:38:42,160
BEHAVIORAL INTERVENTION WITHOUT

3977
02:38:42,160 --> 02:38:44,680
THE MEDICATION, IS REALLY

3978
02:38:44,680 --> 02:38:45,440
BENEFICIAL AND I WOULD LIKE TO

3979
02:38:45,440 --> 02:38:47,840
SEE US DO THAT, RECOGNIZING IT

3980
02:38:47,840 --> 02:38:49,640
WILL COST MORE TO FUND THAT

3981
02:38:49,640 --> 02:38:50,760
THROUGH THE NIH.

3982
02:38:50,760 --> 02:38:51,960
SO THEN THE SECOND COMMENT

3983
02:38:51,960 --> 02:38:53,720
AGAIN, MAYBE THIS IS PARTICULAR

3984
02:38:53,720 --> 02:38:55,440
TO THE FRAGILE X FIELD.

3985
02:38:55,440 --> 02:38:57,480
ONE OF THE CHALLENGES IN A LOT

3986
02:38:57,480 --> 02:38:58,160
OF THE MEDICATION TRIALS IS THEY

3987
02:38:58,160 --> 02:38:59,720
DON'T REALLY KNOW WHICH OUTCOME

3988
02:38:59,720 --> 02:39:00,600
MEASURE TO PICK.

3989
02:39:00,600 --> 02:39:02,840
WE THINK WILL WE WILL HAVE

3990
02:39:02,840 --> 02:39:05,120
POSITIVE IMPACT ON COGNITION SO

3991
02:39:05,120 --> 02:39:08,000
WE DO OUR BEST TO PICK THAT ONE

3992
02:39:08,000 --> 02:39:09,520
PRIMARY OUTCOME MEASURE BUT IT

3993
02:39:09,520 --> 02:39:12,360
IS OFTEN NOT WELL MOTIVATED.

3994
02:39:12,360 --> 02:39:14,640
IF YOU PAIR A PARTICULAR KIND OF

3995
02:39:14,640 --> 02:39:15,520
INTERVENTION WITH THAT, SORE

3996
02:39:15,520 --> 02:39:16,480
PAIR A LANGUAGE INTERVENTION

3997
02:39:16,480 --> 02:39:18,760
WITH THE MEDICATION, THEN HAVE A

3998
02:39:18,760 --> 02:39:19,480
LANGUAGE OUTCOME MEASURE.

3999
02:39:19,480 --> 02:39:20,840
IF YOU DON'T SEE ANY BENEFIT

4000
02:39:20,840 --> 02:39:22,520
THERE YOU'RE NOT REALLY GOING TO

4001
02:39:22,520 --> 02:39:24,440
SEE A BENEFIT IN THE MEDICATION.

4002
02:39:24,440 --> 02:39:28,040
SO I JUST THINK THERE ARE LOTS

4003
02:39:28,040 --> 02:39:31,720
OF WAYS TO REALLY BUILD ON THIS

4004
02:39:31,720 --> 02:39:32,920
MULTIMODAL THING AND MAYBE THE

4005
02:39:32,920 --> 02:39:34,920
LAST POINT I'LL SAY ABOUT THAT

4006
02:39:34,920 --> 02:39:36,480
IS WE JUST DID A BIG -- WE HAVE

4007
02:39:36,480 --> 02:39:39,000
DONE SEVERAL STUDIES WHERE WE

4008
02:39:39,000 --> 02:39:40,440
FOUND THAT THE NO EFFICACY OF

4009
02:39:40,440 --> 02:39:42,640
THE MEDICATION BUT THE

4010
02:39:42,640 --> 02:39:43,800
BEHAVIORAL INTERVENTION WORKED

4011
02:39:43,800 --> 02:39:45,240
WELL AND THEN WHAT A LOT OF

4012
02:39:45,240 --> 02:39:46,640
PEOPLE TAKE FROM THAT IS WE NEED

4013
02:39:46,640 --> 02:39:49,040
TO FOCUS ON MORE MEDICATIONS.

4014
02:39:49,040 --> 02:39:50,160
THE FLIP SIDE OF THAT IS MAYBE

4015
02:39:50,160 --> 02:39:52,880
WE NEED TO FOCUS ON BEHAVIORAL

4016
02:39:52,880 --> 02:39:55,440
THERAPIES AND OTHER KINDS OF

4017
02:39:55,440 --> 02:39:56,440
EDUCATIONAL INTERVENTIONS AND

4018
02:39:56,440 --> 02:39:59,040
NOT PUT ALL OF OUR EGGS IN THE

4019
02:39:59,040 --> 02:40:01,520
MEDICATION BASKET.

4020
02:40:01,520 --> 02:40:02,760
THAT'S MY SOAPBOX BUT THANK YOU.

4021
02:40:02,760 --> 02:40:06,240
>>JUDITH COOPER: THANK
YOU,

4022
02:40:06,240 --> 02:40:06,760
LEN, JANICE?

4023
02:40:06,760 --> 02:40:08,640
>>JANICE LIGHT: I WANTED
TO USE

4024
02:40:08,640 --> 02:40:11,680
MY TIME TO ASK A QUESTION.

4025
02:40:11,680 --> 02:40:12,480
JORDYN, I DON'T KNOW IF YOU'RE

4026
02:40:12,480 --> 02:40:15,640
STILL THERE, AND GRANT, BUT I

4027
02:40:15,640 --> 02:40:17,760
DON'T THINK YOU, AT LEAST

4028
02:40:17,760 --> 02:40:19,680
JORDYN, GOT A CHANCE TO ANSWER

4029
02:40:19,680 --> 02:40:20,640
THE QUESTION WE ALL HAVE BEEN

4030
02:40:20,640 --> 02:40:20,840
ASKED.

4031
02:40:20,840 --> 02:40:22,880
WHAT IS THE BIGGEST UNMET NEED,

4032
02:40:22,880 --> 02:40:24,120
THE GREATEST RESEARCH PRIORITY?

4033
02:40:24,120 --> 02:40:25,480
I THINK IT WOULD BE REALLY

4034
02:40:25,480 --> 02:40:27,560
HELPFUL FOR US TO HEAR YOUR

4035
02:40:27,560 --> 02:40:28,800
PERSPECTIVE ON THAT FROM YOUR

4036
02:40:28,800 --> 02:40:30,080
LIVED EXPERIENCES.

4037
02:40:30,080 --> 02:40:30,800
AND GRANT, YOU AS WELL.

4038
02:40:30,800 --> 02:40:32,240
I KNOW YOU HAD A FEW MINUTES AT

4039
02:40:32,240 --> 02:40:33,760
THE BEGINNING OF THE SESSION BUT

4040
02:40:33,760 --> 02:40:35,520
I'D BE REALLY INTERESTED IN

4041
02:40:35,520 --> 02:40:37,360
HEARING YOUR VIEWPOINTS ON THE

4042
02:40:37,360 --> 02:40:40,360
RESEARCH PRIORITIES.

4043
02:40:40,360 --> 02:40:42,800
>>JUDITH COOPER: I'M
LOOKING

4044
02:40:42,800 --> 02:40:45,440
AND JORDYN IS ON AND GRANT IS

4045
02:40:45,440 --> 02:40:45,600
ON.

4046
02:40:45,600 --> 02:40:47,200
SO MAYBE WE'LL LET JORDYN GO

4047
02:40:47,200 --> 02:40:57,280
FIRST.

4048
02:41:58,000 --> 02:42:00,240
[ TYPING ]

4049
02:42:00,240 --> 02:42:10,320
L. ]

4050
02:42:13,880 --> 02:42:24,000
[ TYPING ]

4051
02:45:01,600 --> 02:45:03,600
I THINK INCLUSION IS AN

4052
02:45:03,600 --> 02:45:04,600
INTERVENTION BUT MAYBE FULLY

4053
02:45:04,600 --> 02:45:05,520
PLANNED INCLUSION.

4054
02:45:05,520 --> 02:45:06,560
IT HAS TO BE DONE RIGHT AND

4055
02:45:06,560 --> 02:45:09,840
THERE IS SAY LOT TO THIS.

4056
02:45:09,840 --> 02:45:11,200
SEGREGATION IS NOTED AND IF WHY

4057
02:45:11,200 --> 02:45:12,800
ARE GOING TO BE SERIOUS ABOUT

4058
02:45:12,800 --> 02:45:13,720
TRAUMA, WE NEED TO THINK LONG

4059
02:45:13,720 --> 02:45:15,080
AND HARD ABOUT THE HARM THAT

4060
02:45:15,080 --> 02:45:16,920
HAPPENS IN SEGREGATED SPACES,

4061
02:45:16,920 --> 02:45:19,280
PLANNED WITH UNRELIABLE

4062
02:45:19,280 --> 02:45:23,640
COMMUNICATION.

4063
02:45:23,640 --> 02:45:26,760
>>JUDITH COOPER: THANK
YOU,

4064
02:45:26,760 --> 02:45:27,680
JORDYN.

4065
02:45:27,680 --> 02:45:29,400
GRANT, WOULD YOU LIKE TO -- ARE

4066
02:45:29,400 --> 02:45:31,240
YOU READY?

4067
02:45:31,240 --> 02:45:32,440
OR WE CAN WAIT FOR YOU.

4068
02:45:32,440 --> 02:45:34,600
IT LOOKS LIKE YOU ARE PREPARING

4069
02:45:34,600 --> 02:45:37,720
SO WE'LL WAIT UNTIL YOU'RE

4070
02:45:37,720 --> 02:45:47,800
READY.

4071
02:46:00,200 --> 02:46:02,920
ACCESSIBILITIESY IN SCHOOLS IS A

4072
02:46:02,920 --> 02:46:05,320
HUGE NEED.

4073
02:46:05,320 --> 02:46:06,720
-- ACCESSIBILITY -- I ECHO WHAT

4074
02:46:06,720 --> 02:46:17,040
JORDYN IS SAYING.

4075
02:46:17,920 --> 02:46:18,440
DR. LIGHT I'M A FAN.

4076
02:46:18,440 --> 02:46:21,680
I WANT TO STUDY ETHNIC GRAPHICS

4077
02:46:21,680 --> 02:46:25,440
AND SO MANY ASPECTS OF HOW ACC

4078
02:46:25,440 --> 02:46:26,680
USERS MANAGE RESEARCH AND

4079
02:46:26,680 --> 02:46:28,400
ACCESSIBILITY IN SCHOOLS IS A

4080
02:46:28,400 --> 02:46:33,280
HUGE NEED.

4081
02:46:33,280 --> 02:46:36,040
>>JUDITH COOPER: THANK
YOU,

4082
02:46:36,040 --> 02:46:37,240
GRANT AND JORDYN.

4083
02:46:37,240 --> 02:46:42,760
OKAY, SO LET'S SEE, NEXT I THINK

4084
02:46:42,760 --> 02:46:43,440
CATHY?

4085
02:46:43,440 --> 02:46:44,360
>>HI, EVERYBODY.

4086
02:46:44,360 --> 02:46:45,360
I THINK ONE OF THE THINGS I

4087
02:46:45,360 --> 02:46:46,760
WANTED TO SECOND AND THIS IS

4088
02:46:46,760 --> 02:46:50,320
PROBABLY MOSTLY DIRECTED TOWARDS

4089
02:46:50,320 --> 02:46:50,760
JUDITH.

4090
02:46:50,760 --> 02:46:52,120
BUT I THINK ONE OF THE ISSUES

4091
02:46:52,120 --> 02:46:53,240
THAT WAS BROUGHT UP, IS THERE

4092
02:46:53,240 --> 02:46:57,240
ANY WAY TO HAVE A SYSTEM THAT IS

4093
02:46:57,240 --> 02:46:58,760
LIKE CANCER CENTERS, FOR

4094
02:46:58,760 --> 02:46:59,000
EXAMPLE?

4095
02:46:59,000 --> 02:47:01,680
I THINK IT CAN'T JUST BE THROUGH

4096
02:47:01,680 --> 02:47:03,000
MEDICINE BECAUSE I THINK AS

4097
02:47:03,000 --> 02:47:05,000
JORDYN AND GRANT JUST SAID, A

4098
02:47:05,000 --> 02:47:07,560
LOT OF ISSUES DO ARISE THROUGH

4099
02:47:07,560 --> 02:47:07,800
SCHOOL.

4100
02:47:07,800 --> 02:47:10,720
BUT IS THERE A WAY TOO HAVE

4101
02:47:10,720 --> 02:47:16,520
STANDARD PROTOCOLS THAT COULD BE

4102
02:47:16,520 --> 02:47:17,760
SHARED WHERE PEOPLE THAT ARE

4103
02:47:17,760 --> 02:47:19,760
CAPABLE OF CARRYING THESE OUT

4104
02:47:19,760 --> 02:47:21,640
AGREE TO DO THIS.

4105
02:47:21,640 --> 02:47:22,760
AND THEN ARE APPLIED TO

4106
02:47:22,760 --> 02:47:23,640
DIFFERENT PEOPLE WHO NEED

4107
02:47:23,640 --> 02:47:24,200
DIFFERENT THINGS.

4108
02:47:24,200 --> 02:47:25,960
I THINK ONE OF THE THINGS I WAS

4109
02:47:25,960 --> 02:47:27,640
STRUCK BY AND THIS IS PARTLY

4110
02:47:27,640 --> 02:47:30,280
SAYING TO DANNY AND CONNIE.

4111
02:47:30,280 --> 02:47:33,560
CONNIE HEARD ME SAY THIS BEFORE.

4112
02:47:33,560 --> 02:47:35,560
BUT I THINK THE SMART DESIGNS

4113
02:47:35,560 --> 02:47:38,560
ARE WONDERFUL EXCEPT SO FAR, I

4114
02:47:38,560 --> 02:47:42,760
WANT TO KNOW WHO RESPONDED AT

4115
02:47:42,760 --> 02:47:44,320
THE START AND WHO DIDN'T RESPOND

4116
02:47:44,320 --> 02:47:47,200
AT THE START.

4117
02:47:47,200 --> 02:47:50,320
NOT JUST WHAT CAUSED RESPONSES.

4118
02:47:50,320 --> 02:47:52,560
AND WITHOUT HUGE NUMBERS WE JUST

4119
02:47:52,560 --> 02:47:53,960
CAN'T FIGURE THAT OUT.

4120
02:47:53,960 --> 02:47:56,600
AND ALSO JUST ADDRESSING THE

4121
02:47:56,600 --> 02:47:59,200
HUGE HETEROGENEITY THAT WE SEE.

4122
02:47:59,200 --> 02:48:03,040
SO IS THERE A WAY TO COORDINATE

4123
02:48:03,040 --> 02:48:05,160
EFFORTS ACROSS SITES?

4124
02:48:05,160 --> 02:48:07,960
AND FRAGILE X HAS DONE THIS.

4125
02:48:07,960 --> 02:48:10,440
I THINK MORE THAN WE SEE IN

4126
02:48:10,440 --> 02:48:13,400
TYPICAL AUTISM, BUT I THINK IT'S

4127
02:48:13,400 --> 02:48:14,160
A HUGE EFFORT.

4128
02:48:14,160 --> 02:48:18,040
BUT I THINK WE ARE ALL TRYING.

4129
02:48:18,040 --> 02:48:19,600
AND IF WE COULD WORK TOGETHER,

4130
02:48:19,600 --> 02:48:22,560
AND FIGURE OUT WAYS TO BE MORE

4131
02:48:22,560 --> 02:48:24,240
INDIVIDUALIZED BUT TO BE SURE WE

4132
02:48:24,240 --> 02:48:28,160
WERE GETTING ENOUGH PEOPLE IN

4133
02:48:28,160 --> 02:48:30,200
DIFFERENT GROUPS THAT WE COULD

4134
02:48:30,200 --> 02:48:32,400
ACTUALLY SEE WHAT WORKS FOR WHOM

4135
02:48:32,400 --> 02:48:34,480
AND WHEN, IS ALSO THE OTHER

4136
02:48:34,480 --> 02:48:34,680
ISSUE.

4137
02:48:34,680 --> 02:48:36,360
BECAUSE I THINK -- I MEAN,

4138
02:48:36,360 --> 02:48:41,040
LOOKING AT JORDYN AND GRANT, YOU

4139
02:48:41,040 --> 02:48:42,480
GUYS ARE YOUNG ADULTS.

4140
02:48:42,480 --> 02:48:44,360
WHAT WOULD BE DIFFERENT ABOUT

4141
02:48:44,360 --> 02:48:46,000
DOING - WHAT WOULD WE DO WITH

4142
02:48:46,000 --> 02:48:48,400
YOU AT 3, WHICH WOULD BE QUITE

4143
02:48:48,400 --> 02:48:49,880
DIFFERENT TO HELP YOU AT 3 THAN

4144
02:48:49,880 --> 02:48:52,120
AT 6?

4145
02:48:52,120 --> 02:48:53,320
OR AT VARIOUS AGES.

4146
02:48:53,320 --> 02:48:55,440
SO I JUST WANT TO PUT IN A PLEA

4147
02:48:55,440 --> 02:48:58,680
FOR REALLY HIGHER ORDER SYSTEMS

4148
02:48:58,680 --> 02:49:00,800
THINKING ABOUT HOW DO WE ADDRESS

4149
02:49:00,800 --> 02:49:04,160
THE NEED FOR LARGER SAMPLES

4150
02:49:04,160 --> 02:49:05,160
ACROSS HETEROGENEITY.

4151
02:49:05,160 --> 02:49:07,800
SO NOT THE SAME THING FOR

4152
02:49:07,800 --> 02:49:08,080
EVERYBODY.

4153
02:49:08,080 --> 02:49:09,840
AND WAYS TO KEEP TRACK OF THAT.

4154
02:49:09,840 --> 02:49:11,720
AND ALSO BACK TO LEN'S POINT,

4155
02:49:11,720 --> 02:49:13,160
NOT THAT YOU HAVE A CONTROL OF

4156
02:49:13,160 --> 02:49:15,240
YOU GET NOTHING VERSUS YOU GET

4157
02:49:15,240 --> 02:49:19,400
THE THING THAT I MOST INVESTED

4158
02:49:19,400 --> 02:49:20,000
IN.

4159
02:49:20,000 --> 02:49:22,880
WE HAVE REASONABLE OFFERS OF

4160
02:49:22,880 --> 02:49:24,720
THINGS TO EVERYBODY.

4161
02:49:24,720 --> 02:49:28,520
>>JUDITH COOPER: THANK
YOU,

4162
02:49:28,520 --> 02:49:30,600
CATHY.

4163
02:49:30,600 --> 02:49:33,360
JOE.

4164
02:49:33,360 --> 02:49:34,160
>>YES, THANKS.

4165
02:49:34,160 --> 02:49:35,200
I'M JOE.

4166
02:49:35,200 --> 02:49:36,920
I'M A U.K.-BASED RESEARCHER AND

4167
02:49:36,920 --> 02:49:38,680
AMAZING TOO BE HERE.

4168
02:49:38,680 --> 02:49:39,600
SO INSPIRING.

4169
02:49:39,600 --> 02:49:42,080
I FEEL LIKE A NEED A FEW DAYS TO

4170
02:49:42,080 --> 02:49:43,680
DIGEST IT ALL NOW.

4171
02:49:43,680 --> 02:49:45,520
I WANTED TO SAY I'M INTERESTED,

4172
02:49:45,520 --> 02:49:48,160
LIKE MOST OF YOU, IN THE

4173
02:49:48,160 --> 02:49:50,640
HETEROGENEITY OF TRAJECTORIES IN

4174
02:49:50,640 --> 02:49:53,240
THIS POPULATION.

4175
02:49:53,240 --> 02:49:54,480
AND THE NEED AS MANY PEOPLE

4176
02:49:54,480 --> 02:49:58,720
BROUGHT UP, FOR HAVING A LONG

4177
02:49:58,720 --> 02:50:00,040
TERM OBSERVATIONS OF PEOPLE SO

4178
02:50:00,040 --> 02:50:03,360
WE CAN KNOW WHO CHANGES IN WHAT

4179
02:50:03,360 --> 02:50:04,840
WAY AND MAYBE WHAT ARE THE

4180
02:50:04,840 --> 02:50:07,480
CORRELATES OF THAT.

4181
02:50:07,480 --> 02:50:09,280
AND THIS IS AT THE FRONT OF MY

4182
02:50:09,280 --> 02:50:11,400
MIND BECAUSE I'M PLANNING A LONG

4183
02:50:11,400 --> 02:50:13,280
TERM OBSERVATIONAL STUDY AT THE

4184
02:50:13,280 --> 02:50:14,560
MOMENT AND DISCUSSING MEASURES.

4185
02:50:14,560 --> 02:50:16,240
ONE OF THE QUESTIONS I HAVE AND

4186
02:50:16,240 --> 02:50:17,520
I DON'T KNOW IF ANYONE CAN SHED

4187
02:50:17,520 --> 02:50:19,320
ANY LIGHT ON THIS FOR ME, BUT IF

4188
02:50:19,320 --> 02:50:22,040
I'M LOOKING AT A POPULATION

4189
02:50:22,040 --> 02:50:23,880
STUDY WHERE EVERYONE STARTS

4190
02:50:23,880 --> 02:50:25,320
MINIMALLY VERBAL OR NON-SPEAKING

4191
02:50:25,320 --> 02:50:26,520
BUT THEY MAY CHANGE IN DIFFERENT

4192
02:50:26,520 --> 02:50:28,400
WAYS IN TERMS OF OF THEIR

4193
02:50:28,400 --> 02:50:29,520
COMMUNICATION SKILLS OVER THE

4194
02:50:29,520 --> 02:50:31,720
PERIOD OF THE STUDY.

4195
02:50:31,720 --> 02:50:34,360
IT'S HARD TO PUT MY FINGER ON A

4196
02:50:34,360 --> 02:50:36,440
MEASURE THAT HAS ENOUGH

4197
02:50:36,440 --> 02:50:39,000
SENSITIVITY TO COVER THE WHOLE

4198
02:50:39,000 --> 02:50:40,640
RANGE OF POSSIBLE COMMUNICATE

4199
02:50:40,640 --> 02:50:41,160
OUTCOMES.

4200
02:50:41,160 --> 02:50:42,920
SO SOMETHING THAT MIGHT BE

4201
02:50:42,920 --> 02:50:45,480
REALLY GOOD IN AN INTERVENTION

4202
02:50:45,480 --> 02:50:48,360
STUDY WHERE WE SEE DIFFERENT

4203
02:50:48,360 --> 02:50:49,320
AMOUNTED OF CHANGE IN A SHORT

4204
02:50:49,320 --> 02:50:52,640
PERIOD, IT MIGHT NOT -- IT MIGHT

4205
02:50:52,640 --> 02:50:54,920
HAVE BIG CEALING EFFECTS FOR

4206
02:50:54,920 --> 02:50:57,360
THOSE WHO GO ON TO ACQUIRE

4207
02:50:57,360 --> 02:50:59,040
PHRASE SPEECH AND MORE LANGUAGE.

4208
02:50:59,040 --> 02:51:00,680
SO I JUST WAS WONDERING HOW

4209
02:51:00,680 --> 02:51:03,720
PEOPLE THOUGHT ABOUT THAT AND IF

4210
02:51:03,720 --> 02:51:04,920
MAYBE THE SOLUTION IS YOU JUST

4211
02:51:04,920 --> 02:51:08,600
HAVE TO HAVE LOTS OF DIFFERENT

4212
02:51:08,600 --> 02:51:09,160
MEASURES.

4213
02:51:09,160 --> 02:51:11,280
THAT'S SOMETHING I'M JUST

4214
02:51:11,280 --> 02:51:15,600
PONDERING AT THE MOMENT.

4215
02:51:15,600 --> 02:51:16,480
>>JUDITH COOPER: I DON'T
KNOW

4216
02:51:16,480 --> 02:51:19,560
IF WE OUGHT TO OPEN IT UP TO

4217
02:51:19,560 --> 02:51:21,400
RESPOND BECAUSE WE HAVE A LOT OF

4218
02:51:21,400 --> 02:51:25,040
PEOPLE IN LINE WITH THEIR HANDS

4219
02:51:25,040 --> 02:51:25,200
UP.

4220
02:51:25,200 --> 02:51:29,400
BUT, MAYBE WE'LL COME BACK TO

4221
02:51:29,400 --> 02:51:30,320
JO'S QUESTION AFTER WE TALK TO

4222
02:51:30,320 --> 02:51:34,640
THESE PEOPLE WITH THE HANDS UP.

4223
02:51:34,640 --> 02:51:34,880
STEPHEN?

4224
02:51:34,880 --> 02:51:36,520
>>STEPHEN CAMARATA: I GO
BACK

4225
02:51:36,520 --> 02:51:38,160
TO THE TIME WHEN I FIRST

4226
02:51:38,160 --> 02:51:39,240
ENCOUNTERED AUTISM.

4227
02:51:39,240 --> 02:51:43,280
I WAS TRAINED IN PSYCHOTHERAPY.

4228
02:51:43,280 --> 02:51:44,560
EVEN THEM I WAS SKEPTICAL.

4229
02:51:44,560 --> 02:51:45,440
WE HAVE BEEN BLAMING THE PARENTS

4230
02:51:45,440 --> 02:51:46,440
A LOT.

4231
02:51:46,440 --> 02:51:47,800
ONE OF THE THINGS I REALLY WORRY

4232
02:51:47,800 --> 02:51:49,880
ABOUT IS THAT WE DO IN FACT NOW,

4233
02:51:49,880 --> 02:51:53,120
IT SHOULD BE A STANDARD OF CARE

4234
02:51:53,120 --> 02:51:54,160
THAT WE PROVIDE PARENT SUPPORT

4235
02:51:54,160 --> 02:51:55,800
AND PARENTS BECOME PARTNERS IN

4236
02:51:55,800 --> 02:51:56,400
THE PROCESS.

4237
02:51:56,400 --> 02:51:58,400
ON THE OTHER HAND, I THINK IT'S

4238
02:51:58,400 --> 02:51:59,240
REALLY IMPORTANT THAT IN

4239
02:51:59,240 --> 02:52:00,240
ADDITION TO UNDERSTANDING THE

4240
02:52:00,240 --> 02:52:03,160
TRAUMA AND THE NEEDS THAT WE

4241
02:52:03,160 --> 02:52:05,960
HEARD FROM OUR FIRST PERSON

4242
02:52:05,960 --> 02:52:07,680
SPEAKERS AND SO PROFOUNDLY MOVED

4243
02:52:07,680 --> 02:52:09,320
BY THAT.

4244
02:52:09,320 --> 02:52:12,080
I THINK WE ALSO WANT TO

4245
02:52:12,080 --> 02:52:13,120
UNDERSTAND DIFFERENT CAPACITIES

4246
02:52:13,120 --> 02:52:16,320
OF PARENTS SO THAT IT'S NOT THE

4247
02:52:16,320 --> 02:52:18,560
CASE THAT WE TRY TO HAVE THE

4248
02:52:18,560 --> 02:52:20,560
PARENT BECOME A MINI-ME

4249
02:52:20,560 --> 02:52:21,360
BEHAVIORAL THERAPIST.

4250
02:52:21,360 --> 02:52:22,280
SOME CAN DO THAT.

4251
02:52:22,280 --> 02:52:25,040
I HAVE PARENTS THAT WORK WITH

4252
02:52:25,040 --> 02:52:25,360
SPEECH PASS.

4253
02:52:25,360 --> 02:52:28,440
I HAD A FAMILY COME FROM

4254
02:52:28,440 --> 02:52:28,880
MISSISSIPPI.

4255
02:52:28,880 --> 02:52:30,560
MOM IS A SINGLE MOM.

4256
02:52:30,560 --> 02:52:32,880
GRANDMA IS HELPING OUT.

4257
02:52:32,880 --> 02:52:35,680
AND HER SON IS NON VERBAL,

4258
02:52:35,680 --> 02:52:36,000
6-YEAR-OLD.

4259
02:52:36,000 --> 02:52:37,280
I HELPED HIM WITH AUGMENTATIVE

4260
02:52:37,280 --> 02:52:40,400
AND HER COMMENT TO ME WAS, SHE

4261
02:52:40,400 --> 02:52:42,160
COULDN'T REALLY UNDERSTAND

4262
02:52:42,160 --> 02:52:42,840
AUGMENTIVE DEVICE AND THAT SHE

4263
02:52:42,840 --> 02:52:44,520
FELT A LOT OF PRESSURE TO

4264
02:52:44,520 --> 02:52:46,120
COMPLETE ALL THESE LESSONS.

4265
02:52:46,120 --> 02:52:47,080
AND IT WAS JUST VERY DIFFICULT

4266
02:52:47,080 --> 02:52:48,720
FOR HER.

4267
02:52:48,720 --> 02:52:50,160
SO I THINK AS WE GO FORWARD, I

4268
02:52:50,160 --> 02:52:51,240
THINK WE WANT TO BEAR THAT IN

4269
02:52:51,240 --> 02:52:51,560
MIND.

4270
02:52:51,560 --> 02:52:55,440
WE WANT TO THINK ABOUT OUR FIRST

4271
02:52:55,440 --> 02:52:56,880
PERSON SPEAKERS IN TERMS OF ARE

4272
02:52:56,880 --> 02:52:59,400
WE PUTTING UNREAL EXPECTATIONS

4273
02:52:59,400 --> 02:53:00,640
ON THESE FOLKS?

4274
02:53:00,640 --> 02:53:03,120
AND CERTAINLY THE NEURODIVERSE

4275
02:53:03,120 --> 02:53:04,160
MOVEMENT HELPED US TO UNDERSTAND

4276
02:53:04,160 --> 02:53:05,240
THAT BETTER.

4277
02:53:05,240 --> 02:53:06,400
BUT WE ALSO WANT TO MAKE SURE WE

4278
02:53:06,400 --> 02:53:08,040
ARE NOT REBLAMING THE MOTHERS.

4279
02:53:08,040 --> 02:53:10,240
I THINK THERE IS ALREADY PLENTY

4280
02:53:10,240 --> 02:53:10,840
OF GUILT TO GO AROUND AND WE

4281
02:53:10,840 --> 02:53:12,240
WANT TO BE REALLY MINDFUL OF

4282
02:53:12,240 --> 02:53:13,200
THAT AND WE WANT TO ANSWER THAT

4283
02:53:13,200 --> 02:53:15,160
WITH DATA.

4284
02:53:15,160 --> 02:53:17,640
SO GOING FORWARD, BIG PICTURE

4285
02:53:17,640 --> 02:53:18,360
MEASURES, WE ALSO WANT TO

4286
02:53:18,360 --> 02:53:19,560
UNDERSTAND WHERE WE CAN MEET

4287
02:53:19,560 --> 02:53:20,480
PARENTS WHERE THEY ARE TO

4288
02:53:20,480 --> 02:53:23,280
SUPPORT THEM IN THEIR JOURNEY.

4289
02:53:23,280 --> 02:53:26,040
>>THANK YOU, STEPHEN.

4290
02:53:26,040 --> 02:53:27,480
MATTHEW.

4291
02:53:27,480 --> 02:53:27,760
>>THANKS.

4292
02:53:27,760 --> 02:53:30,720
I WANT TO MAKE TWO POINTS

4293
02:53:30,720 --> 02:53:31,280
BRIEFLY.

4294
02:53:31,280 --> 02:53:33,760
NUMBER 1, WE TALKED A LOT ABOUT

4295
02:53:33,760 --> 02:53:34,560
PARTICIPATORY RESEARCH.

4296
02:53:34,560 --> 02:53:38,640
I THINK WE ALL AGREE ON THAT.

4297
02:53:38,640 --> 02:53:40,640
BUT OUR GOAL OF COURSE IS TO

4298
02:53:40,640 --> 02:53:42,600
DEVELOP THERAPEUTIC TECHNIQUES.

4299
02:53:42,600 --> 02:53:44,440
IT CAN BE DEPLOYED TO IMPROVE

4300
02:53:44,440 --> 02:53:47,440
QUALITY OF LIFE.

4301
02:53:47,440 --> 02:53:49,920
AND PARTICIPATORY RESEARCH NEEDS

4302
02:53:49,920 --> 02:53:52,120
TO LEAD TO PARTICIPATORY

4303
02:53:52,120 --> 02:53:52,360
THERAPY.

4304
02:53:52,360 --> 02:53:58,240
AND PARTICIPATION IN THERAPY.

4305
02:53:58,240 --> 02:54:02,400
TOO OFTEN PUBLICLY-FUNDED

4306
02:54:02,400 --> 02:54:05,760
PROJECTS RESULT IN PRIVATE SPIN

4307
02:54:05,760 --> 02:54:09,440
OFFS THAT RESULT IN METHODS AND

4308
02:54:09,440 --> 02:54:12,480
TECHNOLOGIES AND DIAGNOSTIC

4309
02:54:12,480 --> 02:54:15,280
TESTS BEING MARKETED FOR

4310
02:54:15,280 --> 02:54:17,600
HUNDREDS OR EVEN THOUSANDS OF

4311
02:54:17,600 --> 02:54:23,520
DOLLARS TO FAMILIES WHO ARE

4312
02:54:23,520 --> 02:54:25,400
ALREADY BEING IMPOVERISHED BY

4313
02:54:25,400 --> 02:54:25,960
THIS CONDITION.

4314
02:54:25,960 --> 02:54:29,240
NOW THAT IS BAD ENOUGH IN

4315
02:54:29,240 --> 02:54:30,000
HIGH-INCOME COUNTRIES BUT WHEN

4316
02:54:30,000 --> 02:54:33,680
YOU LOOK AT IT IN A GLOBAL

4317
02:54:33,680 --> 02:54:36,280
CONTEXT, WHERE PEOPLE -- YOU'RE

4318
02:54:36,280 --> 02:54:39,040
NOT GOING TO HAVE A TABLET.

4319
02:54:39,040 --> 02:54:40,800
THEY PROBABLY MIGHT HAVE A

4320
02:54:40,800 --> 02:54:41,120
SMARTPHONE.

4321
02:54:41,120 --> 02:54:42,000
THEY MIGHT NOT EVEN HAVE A

4322
02:54:42,000 --> 02:54:45,040
TOILET BUT MANY PEOPLE DO HAVE A

4323
02:54:45,040 --> 02:54:46,040
SMARTPHONE.

4324
02:54:46,040 --> 02:54:49,640
THE TROUBLE IS THAT WE ARE

4325
02:54:49,640 --> 02:54:53,120
DEVELOPING THESE THERAPIES THAT

4326
02:54:53,120 --> 02:54:54,160
ARE POTENTIALLY GOING TO BE

4327
02:54:54,160 --> 02:54:54,800
STOPPED IN THE PRIVATE COMPANIES

4328
02:54:54,800 --> 02:54:58,760
AND NOT BE ACCESSIBLE EVEN FOR

4329
02:54:58,760 --> 02:54:59,720
PEOPLE IN THE UNITED STATES.

4330
02:54:59,720 --> 02:55:01,360
AND CERTAINLY NOT ACCESSIBLE ON

4331
02:55:01,360 --> 02:55:02,080
A GLOBAL SCALE.

4332
02:55:02,080 --> 02:55:04,360
WE HAVE SEEN THIS HAPPEN BEFORE

4333
02:55:04,360 --> 02:55:07,680
WHEN AUTISM DIAGNOSTIC TESTS.

4334
02:55:07,680 --> 02:55:10,040
WHY DOES IT NOT GET USED IN

4335
02:55:10,040 --> 02:55:10,240
INDIA?

4336
02:55:10,240 --> 02:55:11,680
IT'S BECAUSE NOBODY CAN PAY FOR

4337
02:55:11,680 --> 02:55:11,840
IT.

4338
02:55:11,840 --> 02:55:13,200
THAT IS ONE POINT.

4339
02:55:13,200 --> 02:55:17,840
THE OTHER POINT IS, WE SAID THAT

4340
02:55:17,840 --> 02:55:19,320
ALL PEOPLE SHOULD BE ENTITLED TO

4341
02:55:19,320 --> 02:55:20,080
INDEPENDENT COMMUNICATION AND

4342
02:55:20,080 --> 02:55:23,400
THEN THAT IS A GOAL TO WHICH I

4343
02:55:23,400 --> 02:55:28,720
WHOLEHEARTEDLY SUBSCRIBE.

4344
02:55:28,720 --> 02:55:30,960
BUT IN ADDITION, PEOPLE SHOULD

4345
02:55:30,960 --> 02:55:33,600
BE ENTITLED TO RESPECT AS

4346
02:55:33,600 --> 02:55:33,840
PERSONS.

4347
02:55:33,840 --> 02:55:37,280
AND JORDYN MADE A VERY ELEGANT

4348
02:55:37,280 --> 02:55:39,200
POINT ABOUT THAT.

4349
02:55:39,200 --> 02:55:41,000
SHE WAS BEING -- SHE TALKED

4350
02:55:41,000 --> 02:55:43,200
ABOUT BEING TALKED AROUND AND

4351
02:55:43,200 --> 02:55:44,400
TALKED DOWN TO.

4352
02:55:44,400 --> 02:55:48,040
I RECALL THAT THERE WAS A PERSON

4353
02:55:48,040 --> 02:55:53,840
WITH -- WHO WAS AN AAC USER WHO

4354
02:55:53,840 --> 02:55:55,040
APPROACHED.BIDE WHEN HE WAS ON

4355
02:55:55,040 --> 02:55:55,880
THE CAMPAIGN TRAIL.

4356
02:55:55,880 --> 02:56:00,880
AND BIDEN TALKED TO HIM AS

4357
02:56:00,880 --> 02:56:01,560
THOUGH HE WERE SOME KIND OF

4358
02:56:01,560 --> 02:56:02,040
FOOL.

4359
02:56:02,040 --> 02:56:05,360
TALKING DOWN TO HIM SAYING, YOU

4360
02:56:05,360 --> 02:56:06,240
ARE SMART.

4361
02:56:06,240 --> 02:56:09,400
I WISH I COULD FIND THE VIDEO ON

4362
02:56:09,400 --> 02:56:13,680
YouTube.

4363
02:56:13,680 --> 02:56:14,320
IT ENRAGED ME.

4364
02:56:14,320 --> 02:56:16,720
NOW I DON'T KNOW HOW MUCH MY

4365
02:56:16,720 --> 02:56:18,760
BROTHER -- HOW MUCH OF MY

4366
02:56:18,760 --> 02:56:22,400
BROTHER'S JOHN'S ASSISTED TYPED

4367
02:56:22,400 --> 02:56:23,840
COMMUNICATIONS CAME FROM HIM.

4368
02:56:23,840 --> 02:56:26,760
I KNOW THAT SOME OF THEM DO.

4369
02:56:26,760 --> 02:56:28,760
I ALSO KNOW THAT SOME OF THEM

4370
02:56:28,760 --> 02:56:30,520
HAVE NOT.

4371
02:56:30,520 --> 02:56:33,680
BUT WHAT I DO KNOW IS THAT WHEN

4372
02:56:33,680 --> 02:56:36,720
HE WAS GIVEN ACCESS TO TYPING,

4373
02:56:36,720 --> 02:56:40,000
AND WHEN PEOPLE STARTED TAKING

4374
02:56:40,000 --> 02:56:44,560
HIM SERIOUSLY AS A CONVERSATION

4375
02:56:44,560 --> 02:56:47,400
PARTNER, YOU COULD SEE THE

4376
02:56:47,400 --> 02:56:51,960
RELIEF IN HIS FACE.

4377
02:56:51,960 --> 02:56:55,560
AND I DON'T CARE IF THE TYPING

4378
02:56:55,560 --> 02:56:55,920
IS ALL RUBBISH.

4379
02:56:55,920 --> 02:57:00,720
I DON'T THINK ALL OF IT IS.

4380
02:57:00,720 --> 02:57:04,760
BUT THAT RESPECT, THAT BEING

4381
02:57:04,760 --> 02:57:06,680
TAKEN SERIOUSLY IS ALSO HIGHLY,

4382
02:57:06,680 --> 02:57:07,080
HIGHLY IMPORTANT.

4383
02:57:07,080 --> 02:57:10,520
AND WE NEED TO KEEP THAT IN MIND

4384
02:57:10,520 --> 02:57:10,760
ALWAYS.

4385
02:57:10,760 --> 02:57:13,320
>>JUDITH COOPER: THANK
YOU,

4386
02:57:13,320 --> 02:57:13,560
MATTHEW.

4387
02:57:13,560 --> 02:57:16,080
VERY IMPORTANT POINT.

4388
02:57:16,080 --> 02:57:16,360
ZACK?

4389
02:57:16,360 --> 02:57:19,080
>>SO, RIGHT.

4390
02:57:19,080 --> 02:57:20,880
I ALSO WOULD LIKE TO MAKE A FEW

4391
02:57:20,880 --> 02:57:21,120
POINTS.

4392
02:57:21,120 --> 02:57:22,760
A LITTLE OFF TRACK FROM WHERE

4393
02:57:22,760 --> 02:57:24,120
THE LAST COUPLE OF CONVERSATION

4394
02:57:24,120 --> 02:57:25,480
POINTS HAVE TAKEN US.

4395
02:57:25,480 --> 02:57:28,360
BUT I WANT TO SEAR BACK A LITTLE

4396
02:57:28,360 --> 02:57:29,800
BIT TOWARDS THE HETEROGENEITY OF

4397
02:57:29,800 --> 02:57:30,560
THIS POPULATION.

4398
02:57:30,560 --> 02:57:32,080
BECAUSE THIS IS SOMETHING THAT

4399
02:57:32,080 --> 02:57:34,960
HAS COME UP A FEW TIMES TODAY.

4400
02:57:34,960 --> 02:57:36,360
AND ONE OF THE -- AGAIN BROUGHT

4401
02:57:36,360 --> 02:57:38,760
UP A LOT YESTERDAY TOO.

4402
02:57:38,760 --> 02:57:41,440
BECAUSE AGAIN, DESPITE ALL FOLKS

4403
02:57:41,440 --> 02:57:43,120
HERE BEING MINIMALLY VERBAL AND

4404
02:57:43,120 --> 02:57:45,040
MINIMALLY SPEAKING OR NON VERBAL

4405
02:57:45,040 --> 02:57:46,680
AND NON-SPEAKING, AGAIN WE ARE

4406
02:57:46,680 --> 02:57:49,480
NECESSARILY TALKING ABOUT

4407
02:57:49,480 --> 02:57:52,360
DIFFERENT CORE DEFICITS THAT ARE

4408
02:57:52,360 --> 02:57:54,160
CAUSING THE LOW LEVELS OF SPEECH

4409
02:57:54,160 --> 02:57:54,560
OR LANGUAGE.

4410
02:57:54,560 --> 02:57:55,560
SOME OF IT IS SPEECH.

4411
02:57:55,560 --> 02:57:56,640
SOME OF IT IS LANGUAGE.

4412
02:57:56,640 --> 02:57:59,680
SOME OF IT IS COCK NITION.

4413
02:57:59,680 --> 02:58:01,400
AND THOSE ARE FUNDAMENTALLY

4414
02:58:01,400 --> 02:58:03,400
DIFFERENT THINGS -- COGNITION.

4415
02:58:03,400 --> 02:58:05,480
-- THAT PERHAPS WE FUND

4416
02:58:05,480 --> 02:58:06,560
DIFFERENT INTERVENTIONS.

4417
02:58:06,560 --> 02:58:09,000
IF YOU SIMPLY NEED OR HAVE

4418
02:58:09,000 --> 02:58:11,480
INTACT LANGUAGE AND YOU NEED

4419
02:58:11,480 --> 02:58:12,560
SOMETHING TO COMMUNICATE,

4420
02:58:12,560 --> 02:58:13,880
BECAUSE YOUR LANGUAGE IS INTACT,

4421
02:58:13,880 --> 02:58:14,600
THAT'S GREAT.

4422
02:58:14,600 --> 02:58:16,040
IT'S EASY FIX.

4423
02:58:16,040 --> 02:58:16,480
HOPEFULLY.

4424
02:58:16,480 --> 02:58:19,920
YOU DON'T NEED TOO MUCH IN THE

4425
02:58:19,920 --> 02:58:22,040
WAY OF ACTUAL LANGUAGE

4426
02:58:22,040 --> 02:58:22,520
INSTRUCTION.

4427
02:58:22,520 --> 02:58:24,320
YOU MIGHT ACTUALLY HAVE A GREAT

4428
02:58:24,320 --> 02:58:27,960
RECEPTIVE VOCABULARY ALREADY.

4429
02:58:27,960 --> 02:58:29,920
IN SOME CASES YOU DON'T HAVE THE

4430
02:58:29,920 --> 02:58:30,880
CONCEPTUAL KNOWLEDGE TO PRODUCE

4431
02:58:30,880 --> 02:58:31,560
ANY LANGUAGE.

4432
02:58:31,560 --> 02:58:34,720
YOU MAY HAVE A PRETTY SEVERE

4433
02:58:34,720 --> 02:58:35,920
INTELLECTUAL DISABILITY AND YOU

4434
02:58:35,920 --> 02:58:38,720
MAY NOT -- YOU MAY BE PRETTY

4435
02:58:38,720 --> 02:58:39,640
CONCEALING BY YOUR COGNITION.

4436
02:58:39,640 --> 02:58:42,440
IN THOSE CASES, THERE MIGHT NOT

4437
02:58:42,440 --> 02:58:43,480
BE A LOT LANGUAGE INTERVENTION

4438
02:58:43,480 --> 02:58:45,360
CAN DO FOR YOU.

4439
02:58:45,360 --> 02:58:47,400
CLEARLY THESE ARE DIFFERENT

4440
02:58:47,400 --> 02:58:48,680
PEOPLE WHO NEED DIFFERENT

4441
02:58:48,680 --> 02:58:48,920
THINGS.

4442
02:58:48,920 --> 02:58:51,000
WE NEED TO DO MORE BEFORE WE

4443
02:58:51,000 --> 02:58:53,440
IMPLEMENT THE INTERVENTIONS TO

4444
02:58:53,440 --> 02:58:54,760
SUBTYPE PEOPLE, TO UNDERSTAND

4445
02:58:54,760 --> 02:58:57,720
WHO IS GOING TO EVEN POTENTIALLY

4446
02:58:57,720 --> 02:58:59,560
BENEFIT FROM INCLUSION IN A

4447
02:58:59,560 --> 02:58:59,960
TRIAL.

4448
02:58:59,960 --> 02:59:02,520
IT'S HARD, OBVIOUSLY WHEN WE GET

4449
02:59:02,520 --> 02:59:04,040
TO THE 3-YEAR-OLDS,

4450
02:59:04,040 --> 02:59:04,520
TWO-YEAR-OLDS.

4451
02:59:04,520 --> 02:59:06,400
WE DON'T DIAGNOSE INTELLECTUAL

4452
02:59:06,400 --> 02:59:07,400
DISABILITIES IN THESE KIDS.

4453
02:59:07,400 --> 02:59:08,920
EVEN THE KIDS WHO ARE LIKE,

4454
02:59:08,920 --> 02:59:10,120
OKAY, THIS IS A GLOBAL DELAY.

4455
02:59:10,120 --> 02:59:12,800
WE ARE PRETTY SURE.

4456
02:59:12,800 --> 02:59:14,760
ACCOUNT WE HAVE THE DIAGNOSIS

4457
02:59:14,760 --> 02:59:18,120
AND FRAGILE X -- THERE ARE

4458
02:59:18,120 --> 02:59:20,760
[ INAUDIBLE ]

4459
02:59:20,760 --> 02:59:22,120
MORE SEVERE BUT OKAY.

4460
02:59:22,120 --> 02:59:25,400
BUT IN IDIOPATHIC ID, WE ARE NOT

4461
02:59:25,400 --> 02:59:25,680
SURE.

4462
02:59:25,680 --> 02:59:28,160
WE HEDGED, ET CETERA.

4463
02:59:28,160 --> 02:59:30,600
THERE ARE ALL SORTS OF VARIABLE

4464
02:59:30,600 --> 02:59:31,000
TRAJECTORIES.

4465
02:59:31,000 --> 02:59:32,400
AND IT'S VERY IMPORTANT FOR US

4466
02:59:32,400 --> 02:59:36,840
AS CLINICIANS TO FIGURE OUT HOW

4467
02:59:36,840 --> 02:59:38,160
CAN WE SUBTYPE?

4468
02:59:38,160 --> 02:59:39,480
HOW CAN WE STRATIFY?

4469
02:59:39,480 --> 02:59:41,360
BECAUSE THAT'S GOING TO MATTER A

4470
02:59:41,360 --> 02:59:43,320
LOT, ESPECIALLY IF WE ARE TRYING

4471
02:59:43,320 --> 02:59:46,680
TO START EARLY TO MATCH THE

4472
02:59:46,680 --> 02:59:49,280
CHILD, MATCH THE PERSON TO THE

4473
02:59:49,280 --> 02:59:50,000
INTERVENTION.

4474
02:59:50,000 --> 02:59:51,480
BECAUSE AGAIN WE WANT OUTCOMES

4475
02:59:51,480 --> 02:59:53,760
THAT ARE GOING TO BE FUNCTIONAL

4476
02:59:53,760 --> 02:59:56,320
FOR PEOPLE.

4477
02:59:56,320 --> 02:59:57,480
AND CLEARLY THEY WILL BE

4478
02:59:57,480 --> 02:59:58,320
DIFFERENT FOR DIFFERENT PEOPLE.

4479
02:59:58,320 --> 03:00:02,360
>>JUDITH COOPER: THANK
YOU,

4480
03:00:02,360 --> 03:00:02,600
ZACK.

4481
03:00:02,600 --> 03:00:02,840
GIACOMO?

4482
03:00:02,840 --> 03:00:03,480
>>THANK YOU.

4483
03:00:03,480 --> 03:00:06,560
YES, I RAISED MY HAND BECAUSE I

4484
03:00:06,560 --> 03:00:09,640
WANTED TO RESPOND TO OUR

4485
03:00:09,640 --> 03:00:12,800
COLLEAGUE, JOE ABOUT MEASURES.

4486
03:00:12,800 --> 03:00:17,640
NOT ME, BUT MY CANADIAN

4487
03:00:17,640 --> 03:00:20,040
COLLEAGUES, ISABEL AND HELL AN

4488
03:00:20,040 --> 03:00:21,000
FLANAGAN CREATED A TOOL CALLED

4489
03:00:21,000 --> 03:00:22,760
THE ASSESSMENT OF FACE OF

4490
03:00:22,760 --> 03:00:25,480
PRESCHOOL LANGUAGE OR APPLE,

4491
03:00:25,480 --> 03:00:28,760
WHICH APPLIES TO LANGUAGE

4492
03:00:28,760 --> 03:00:31,120
BENCHMARKS FRAMEWORK FOR

4493
03:00:31,120 --> 03:00:33,480
PROFILES OF LANGUAGE LOOKING AT

4494
03:00:33,480 --> 03:00:35,680
PRAGMATICS, VOCABULARY, GRAMMAR.

4495
03:00:35,680 --> 03:00:37,280
AND DIFFERENT DIMENSIONS OF

4496
03:00:37,280 --> 03:00:40,160
LANGUAGE THAT CAN BE USED

4497
03:00:40,160 --> 03:00:43,400
FLEXIBLEY THROUGH FROM

4498
03:00:43,400 --> 03:00:44,560
TRANSCRIPTS OR FROM STANDARDIZED

4499
03:00:44,560 --> 03:00:49,160
MEASURES WHICH WE HAVE USED FOR

4500
03:00:49,160 --> 03:00:51,040
WHAT I'M LEADING IN THESE FINAL

4501
03:00:51,040 --> 03:00:51,800
STAGES.

4502
03:00:51,800 --> 03:00:53,200
WE WERE ABLE TO CHARACTERIZE A

4503
03:00:53,200 --> 03:00:54,840
SAMPLE OF 1000 OR SO CHILDREN

4504
03:00:54,840 --> 03:00:58,640
WHO RECEIVED THE INTERVENTION

4505
03:00:58,640 --> 03:01:00,760
AND HALF OF THEM WERE IN A --

4506
03:01:00,760 --> 03:01:03,360
MINIMALLY VERBAL AFTER THE

4507
03:01:03,360 --> 03:01:04,720
INTERVENTION AND WE ARE TRYING

4508
03:01:04,720 --> 03:01:05,840
TO UNDERSTAND WHY.

4509
03:01:05,840 --> 03:01:07,880
IT'S A GREAT TOOL.

4510
03:01:07,880 --> 03:01:17,560
I ALSO WANTED TO -- I REALLY

4511
03:01:17,560 --> 03:01:18,760
AGREED ON THE IDEA THAT WE NEED

4512
03:01:18,760 --> 03:01:20,520
TO BE ON THE SAME PAGE.

4513
03:01:20,520 --> 03:01:24,200
BUT I THINK WE ARE NOT DOING

4514
03:01:24,200 --> 03:01:25,040
ENOUGH METICULOUS EXAMINATIONS

4515
03:01:25,040 --> 03:01:27,400
OF WHAT ARE THE INTENTIONS THAT

4516
03:01:27,400 --> 03:01:29,760
SOMETIMES PREVENT US FROM BEING

4517
03:01:29,760 --> 03:01:31,960
ON THE SAME PAGE IN BETWEEN

4518
03:01:31,960 --> 03:01:34,880
SCIENTIST OR PEOPLE TRAINED AS

4519
03:01:34,880 --> 03:01:36,240
SCIENTISTS.

4520
03:01:36,240 --> 03:01:38,600
AND STAKEHOLDERS IN THE

4521
03:01:38,600 --> 03:01:40,320
COMMUNITY.

4522
03:01:40,320 --> 03:01:41,760
AND I THINK SOME OF THE ONGOING

4523
03:01:41,760 --> 03:01:43,720
TENSIONS MIGHT BE RELATED TO THE

4524
03:01:43,720 --> 03:01:46,200
FACT THAT A SCIENTIST WE ARE

4525
03:01:46,200 --> 03:01:48,560
TRAINED TO BE SKEPTICAL TO STAY

4526
03:01:48,560 --> 03:01:50,800
AWAY FROM ANECDOTAL EVIDENCE AND

4527
03:01:50,800 --> 03:01:52,320
THIS MENTALITY THAT COMINGS FROM

4528
03:01:52,320 --> 03:01:57,000
OUR TRAINING, PROBABLY COMES

4529
03:01:57,000 --> 03:01:58,960
ACROSS AS NOT TRUSTING OR NOT

4530
03:01:58,960 --> 03:02:02,280
REALLY WANTING TO ENGAGE WITH

4531
03:02:02,280 --> 03:02:03,680
PEOPLE'S LIVED EXPERIENCE.

4532
03:02:03,680 --> 03:02:05,840
AND THAT IS ATTENTION.

4533
03:02:05,840 --> 03:02:07,320
I'M NOT SAYING IT IS WRONG TO BE

4534
03:02:07,320 --> 03:02:09,680
A SCIENTIST OR THAT WE NEED TO

4535
03:02:09,680 --> 03:02:11,400
ENGAGE WITH ANY LIVED WITH

4536
03:02:11,400 --> 03:02:12,160
EXPERIENCE.

4537
03:02:12,160 --> 03:02:13,880
BUT I CAN SEE WHEN I TRAIN YOUNG

4538
03:02:13,880 --> 03:02:17,120
SCIENTIST THEY NEED TO STRIKE A

4539
03:02:17,120 --> 03:02:18,200
BALANCE BETWEEN WHAT IS

4540
03:02:18,200 --> 03:02:21,240
LISTENING TO PEOPLE'S LIVED

4541
03:02:21,240 --> 03:02:25,320
EXPERIENCE WHILE ADOPTING THE

4542
03:02:25,320 --> 03:02:25,920
FOUNDATION OF THE SCIENTIFIC

4543
03:02:25,920 --> 03:02:30,160
METHOD IS A HEALTHY SKEPTICISM.

4544
03:02:30,160 --> 03:02:33,720
IT'S LOOKING AT GOING BEYOND

4545
03:02:33,720 --> 03:02:35,400
WHAT YOU IMMEDIATELY FEEL.

4546
03:02:35,400 --> 03:02:36,960
SO THAT CREATES A COMPLICATED

4547
03:02:36,960 --> 03:02:38,360
DYNAMIC IN THE FIELD THAT WE

4548
03:02:38,360 --> 03:02:39,880
NEED TO STUDY MORE.

4549
03:02:39,880 --> 03:02:41,080
THIS IS ALSO IN ITSELF A

4550
03:02:41,080 --> 03:02:44,960
RESEARCH QUESTION ON HOW WE

4551
03:02:44,960 --> 03:02:45,960
CONVEY BOTH PRIORITIES.

4552
03:02:45,960 --> 03:02:50,000
AND SAME WITH THE USE OF

4553
03:02:50,000 --> 03:02:50,880
SPECIFIC TERMS.

4554
03:02:50,880 --> 03:02:53,000
LIKE IQ AND INTELLECTUAL

4555
03:02:53,000 --> 03:02:56,400
DISABILITY WHICH ARE MANAGED TO

4556
03:02:56,400 --> 03:02:57,960
ACCOMPLISH WHAT WAS SAYING

4557
03:02:57,960 --> 03:02:58,800
BEFORE.

4558
03:02:58,800 --> 03:03:01,120
PHENOTYPING PEOPLE SO WE

4559
03:03:01,120 --> 03:03:02,960
UNDERSTAND AND WHAT ZACK WAS

4560
03:03:02,960 --> 03:03:03,960
SAYING, UNDERSTAND INDIVIDUAL

4561
03:03:03,960 --> 03:03:05,960
DIFFERENCES BETTER IF WE

4562
03:03:05,960 --> 03:03:06,560
QUANTIFY.

4563
03:03:06,560 --> 03:03:08,840
WE ALSO UNDERSTAND INTELLECTUAL

4564
03:03:08,840 --> 03:03:10,320
DISABILITY COMES ACROSS AS A

4565
03:03:10,320 --> 03:03:11,480
DEROGATIVE TERM THAT PEOPLE WANT

4566
03:03:11,480 --> 03:03:13,000
TO DISTANCE THEMSELVES FROM.

4567
03:03:13,000 --> 03:03:16,040
AND IT'S DISTANCING THEMSELVES

4568
03:03:16,040 --> 03:03:17,720
FROM INTELLECTUAL DISABILITY CAN

4569
03:03:17,720 --> 03:03:20,320
CREATE OR PUT YOU IN A CORNER

4570
03:03:20,320 --> 03:03:21,800
AND YOU DON'T WANT TO TALK ABOUT

4571
03:03:21,800 --> 03:03:24,360
IT ANYMORE BECAUSE IT'S GOING TO

4572
03:03:24,360 --> 03:03:26,360
BE, COME ACROSS AS IF YOU ARE

4573
03:03:26,360 --> 03:03:29,520
UNDER VALUING PEOPLE.

4574
03:03:29,520 --> 03:03:31,800
AND THAT CONVERSATION BECOMES

4575
03:03:31,800 --> 03:03:35,400
EVEN MORE DIFFICULT BECAUSE THEN

4576
03:03:35,400 --> 03:03:40,080
OFTEN WE HEAR COMMENTS ABOUT THE

4577
03:03:40,080 --> 03:03:42,160
RICHNESS OF THE HUMANITY OF

4578
03:03:42,160 --> 03:03:45,480
PEOPLE OR WE CELEBRATE THEIR

4579
03:03:45,480 --> 03:03:48,320
HUMAN FULLNESS IN RELATIONSHIP

4580
03:03:48,320 --> 03:03:50,120
TO SOMEONE'S IQ WAS

4581
03:03:50,120 --> 03:03:52,520
UNDERESTIMATED AND THEN IT CAME

4582
03:03:52,520 --> 03:03:56,160
OUT THAT THAT PERSON WAS INDEED

4583
03:03:56,160 --> 03:03:56,960
EXTREMELY INTELLIGENT AND JUST

4584
03:03:56,960 --> 03:03:59,960
HAD DIFFERENT BARRIERS.

4585
03:03:59,960 --> 03:04:01,440
BUT IT'S VERY IMPORTANT THAT

4586
03:04:01,440 --> 03:04:03,880
THIS FULLNESS, THIS QUALITY IS

4587
03:04:03,880 --> 03:04:05,880
ALSO ACKNOWLEDGED IN PEOPLE WHO

4588
03:04:05,880 --> 03:04:07,280
HAVE AN INTELLECTUAL DISABILITY

4589
03:04:07,280 --> 03:04:08,760
AND HAVING THIS DISABILITY

4590
03:04:08,760 --> 03:04:13,040
DOESN'T MAKE A PERSON LESS

4591
03:04:13,040 --> 03:04:13,440
SUCCESSFUL PERSON.

4592
03:04:13,440 --> 03:04:15,120
AND SOMETIMES WE JUST NEED TO

4593
03:04:15,120 --> 03:04:19,680
MAKE SURE IS THAT THOSE

4594
03:04:19,680 --> 03:04:22,920
NARRATIVES OF UNDERESTIMATING

4595
03:04:22,920 --> 03:04:25,320
SOMEONE'S INTELLIGENCE ARE NOT

4596
03:04:25,320 --> 03:04:28,600
ULTIMATELY THE NARRATIVE OF

4597
03:04:28,600 --> 03:04:29,240
APPRECIATING THE STRENGTHS OVER

4598
03:04:29,240 --> 03:04:31,440
SOMEONE WHO MIGHT NOT HAVE THE

4599
03:04:31,440 --> 03:04:33,440
SAME LEVEL OF INTELLIGENCE.

4600
03:04:33,440 --> 03:04:36,400
>>JUDITH COOPER:
EXCELLENT

4601
03:04:36,400 --> 03:04:36,880
POINT.

4602
03:04:36,880 --> 03:04:39,160
THANK YOU VERY MUCH.

4603
03:04:39,160 --> 03:04:39,400
KAREN?

4604
03:04:39,400 --> 03:04:43,040
>>KAREN: THANK YOU FOR
TAKING

4605
03:04:43,040 --> 03:04:45,240
MY COMMENT.

4606
03:04:45,240 --> 03:04:46,520
IT MY COMMENT PICKS UP ON WHAT A

4607
03:04:46,520 --> 03:04:49,120
LOT OF PEOPLE HAVE SAID IN

4608
03:04:49,120 --> 03:04:50,760
DIFFERENT WAYS AT DIFFERENT

4609
03:04:50,760 --> 03:04:51,680
POINTS IN THE CONFERENCE.

4610
03:04:51,680 --> 03:04:57,320
AND IT TOUCHES ON THE NEED

4611
03:04:57,320 --> 03:05:00,080
FOR -- DESCRIPTIONS OF THE

4612
03:05:00,080 --> 03:05:03,920
BLENDED STUDIES, THE NEED FOR

4613
03:05:03,920 --> 03:05:07,880
SENSITIVE AND USEFUL OUTCOME

4614
03:05:07,880 --> 03:05:12,360
MEASURES AND WHAT JOE WAS JUST

4615
03:05:12,360 --> 03:05:14,600
SAYING ABOUT CREATING

4616
03:05:14,600 --> 03:05:17,560
OBSERVATIONAL STUDIES.

4617
03:05:17,560 --> 03:05:19,680
I THINK ONE CHALLENGE THAT I

4618
03:05:19,680 --> 03:05:22,680
HAVE IN THIS AREA IS THAT IF I

4619
03:05:22,680 --> 03:05:24,080
WANT TO INVESTIGATE A

4620
03:05:24,080 --> 03:05:26,640
DEVELOPMENTAL TRAJECTORY,

4621
03:05:26,640 --> 03:05:28,240
ESPECIALLY AS IT IS AFFECTED BY

4622
03:05:28,240 --> 03:05:29,640
TREATMENT, I DON'T KNOW WHAT I

4623
03:05:29,640 --> 03:05:31,400
AM MEASURING IT AGAINST AND I

4624
03:05:31,400 --> 03:05:36,360
CAN'T NOT GIVE A CHILD THERAPY.

4625
03:05:36,360 --> 03:05:37,640
SO I THINK THAT SOMEHOW IF WE

4626
03:05:37,640 --> 03:05:40,600
HAVE ROOM FOR PHENOTYPING OR

4627
03:05:40,600 --> 03:05:42,400
NATURAL HISTORY STUDIES THAT

4628
03:05:42,400 --> 03:05:44,160
JUST FOLLOW PEOPLE FOR MANY,

4629
03:05:44,160 --> 03:05:46,800
MANY YEARS IF THEY ARE WILLING

4630
03:05:46,800 --> 03:05:49,440
TO BE IN PARTNERSHIP WITH A

4631
03:05:49,440 --> 03:05:49,760
RESEARCHER.

4632
03:05:49,760 --> 03:05:53,440
WE COULD PROBABLY COME UP WITH

4633
03:05:53,440 --> 03:05:56,000
SOME MODULARIZED MEASURES,

4634
03:05:56,000 --> 03:05:58,800
TAKING MY INSPIRATION FROM THE

4635
03:05:58,800 --> 03:06:01,000
ADOS WHERE SOME PEOPLE GET --

4636
03:06:01,000 --> 03:06:02,400
THERE IS SOME SMALL SET OF

4637
03:06:02,400 --> 03:06:04,680
MEASURES THAT EVERYBODY GETS AND

4638
03:06:04,680 --> 03:06:06,680
THEN AS PEOPLE'S ABILITIES

4639
03:06:06,680 --> 03:06:13,000
DEVELOP AND GROW, THEY GET MORE

4640
03:06:13,000 --> 03:06:13,560
MEASURES.

4641
03:06:13,560 --> 03:06:14,240
SOMETHING TO CONSIDER.

4642
03:06:14,240 --> 03:06:17,320
>>JUDITH COOPER: THANK
YOU.

4643
03:06:17,320 --> 03:06:17,640
LARRY?

4644
03:06:17,640 --> 03:06:20,560
>>LARRY: I'D LIKE TO
RESPOND

4645
03:06:20,560 --> 03:06:22,200
WHAT LEN BROUGHT UP.

4646
03:06:22,200 --> 03:06:22,600
GREAT QUESTIONS.

4647
03:06:22,600 --> 03:06:24,240
AND I LOVE THAT QUESTION.

4648
03:06:24,240 --> 03:06:27,360
SO THE FIRST THING ABOUT

4649
03:06:27,360 --> 03:06:29,000
COMBINED TREATMENT BEHAVIORAL

4650
03:06:29,000 --> 03:06:30,600
AND DRUGS FOR EXAMPLE, YOU HAVE

4651
03:06:30,600 --> 03:06:32,200
TO DECIDE WHETHER THE BEHAVIORAL

4652
03:06:32,200 --> 03:06:34,600
AND THE DRUG ARE POINTED AT THE

4653
03:06:34,600 --> 03:06:35,880
SAME THING.

4654
03:06:35,880 --> 03:06:37,520
THEY DON'T HAVE TO BE.

4655
03:06:37,520 --> 03:06:39,040
IT'S EASIER IF THEY ARE BECAUSE

4656
03:06:39,040 --> 03:06:41,720
YOU'RE LOOKING FOR ADDITIVE

4657
03:06:41,720 --> 03:06:41,960
EFFECT.

4658
03:06:41,960 --> 03:06:45,760
THE SECOND POINT IS THE PLACEBO

4659
03:06:45,760 --> 03:06:47,120
CONTROL REFLECTS, IT OUGHT TO

4660
03:06:47,120 --> 03:06:49,240
REFLECT THE SIMPLE TRUTH THAT WE

4661
03:06:49,240 --> 03:06:50,200
DON'T KNOW IF THE MEDICINE HELPS

4662
03:06:50,200 --> 03:06:52,480
OR NOT.

4663
03:06:52,480 --> 03:06:55,000
AND SO THE IDEA THAT PARENTS MAY

4664
03:06:55,000 --> 03:06:56,560
WANT THE MEDICINE, THEY HAVE IT

4665
03:06:56,560 --> 03:06:58,520
IN THEIR BELIEF THAT IS IT GOING

4666
03:06:58,520 --> 03:07:01,480
TO HELP BUT WE DON'T KNOW.

4667
03:07:01,480 --> 03:07:04,360
AND SIDE POINT, IT WAS MENTIONED

4668
03:07:04,360 --> 03:07:05,360
EARLIER THAT YOU COULD PERHAPS

4669
03:07:05,360 --> 03:07:08,520
USE THE PLACEBO RUN IN AS A WAY

4670
03:07:08,520 --> 03:07:10,880
TO DO TEST AND RETEST.

4671
03:07:10,880 --> 03:07:14,560
I UNDERSTAND THE IMPULSE BUT NOT

4672
03:07:14,560 --> 03:07:15,120
REALLY.

4673
03:07:15,120 --> 03:07:18,280
BECAUSE PLACEBO PEOPLE HAVE

4674
03:07:18,280 --> 03:07:20,400
EXPECTATIONS THAT COULD EFFECT

4675
03:07:20,400 --> 03:07:21,920
TEST AND RETEST.

4676
03:07:21,920 --> 03:07:24,000
AND THEN THE POINT ABOUT PEOPLE

4677
03:07:24,000 --> 03:07:27,800
THAT GET RANDOMIZED PLACEBO OR

4678
03:07:27,800 --> 03:07:28,400
GET NOTHING.

4679
03:07:28,400 --> 03:07:31,280
THEY ARE GETTING THE BEHAVIORAL

4680
03:07:31,280 --> 03:07:32,280
INTERVENTION AND YOU CAN OFFER

4681
03:07:32,280 --> 03:07:33,600
THE MEDICATION AFTER THE

4682
03:07:33,600 --> 03:07:35,640
RANDOMIZED PHASE.

4683
03:07:35,640 --> 03:07:37,480
SO IT ISN'T A BUST.

4684
03:07:37,480 --> 03:07:39,640
AND THEN, LAST BUT NOT LEAST, ON

4685
03:07:39,640 --> 03:07:42,800
THE ISSUE OF OUTANY MEASURE.

4686
03:07:42,800 --> 03:07:43,840
PARENT RATINGS ARE GREAT.

4687
03:07:43,840 --> 03:07:46,120
I THINK THEY ARE GREAT.

4688
03:07:46,120 --> 03:07:48,760
AND A PARENT MEDIATED

4689
03:07:48,760 --> 03:07:50,640
INTERVENTION IS COMPLICATED

4690
03:07:50,640 --> 03:07:53,360
BECAUSE THEY ARE PART OF THE

4691
03:07:53,360 --> 03:07:54,080
INTERVENTION.

4692
03:07:54,080 --> 03:07:59,120
SO, THEY CAN'T STAND ALONE.

4693
03:07:59,120 --> 03:08:02,400
AND BACK TO MICHAEL SAND BANK

4694
03:08:02,400 --> 03:08:05,240
AND COMPANY'S META-ANALYSIS THAT

4695
03:08:05,240 --> 03:08:06,800
THERE WERE A LOT OF STUDIES THAT

4696
03:08:06,800 --> 03:08:09,040
DID NOT HAVE BLINDED OUTCOMES.

4697
03:08:09,040 --> 03:08:11,800
AND SO, YOU NEED TO HAVE IN

4698
03:08:11,800 --> 03:08:13,960
ADDITION TO PARENT RATINGS, A

4699
03:08:13,960 --> 03:08:16,760
WAY TO GET AT BLINDED OUTCOMES

4700
03:08:16,760 --> 03:08:18,440
LIKE THE CGI.

4701
03:08:18,440 --> 03:08:21,680
AND THE CGI HAS BEEN AROUND FOR

4702
03:08:21,680 --> 03:08:22,680
50 YEARS IN DRUG RESEARCH.

4703
03:08:22,680 --> 03:08:26,240
AND IT IS A WAY OF HAVING A

4704
03:08:26,240 --> 03:08:27,720
CLINICIAN DIVIDE THE WORLD INTO

4705
03:08:27,720 --> 03:08:29,720
POSITIVE RESPONSE AND NEGATIVE

4706
03:08:29,720 --> 03:08:30,080
RESPONSE.

4707
03:08:30,080 --> 03:08:32,000
IT HAS TO HAVE INPUTS.

4708
03:08:32,000 --> 03:08:33,720
IT HAS TO HAVE INPUTS.

4709
03:08:33,720 --> 03:08:37,320
AND IN OUR WORK, ONE OF THE MAIN

4710
03:08:37,320 --> 03:08:40,280
INPUTS WE GET IN ADDITION TO

4711
03:08:40,280 --> 03:08:42,680
PARENT RATINGS AND PERFORMANCE

4712
03:08:42,680 --> 03:08:45,640
RATINGS IS THE PARENT TARGET

4713
03:08:45,640 --> 03:08:46,880
PROBLEM.

4714
03:08:46,880 --> 03:08:49,120
IT'S A SIMPLE DESCRIPTION OF THE

4715
03:08:49,120 --> 03:08:49,760
CHIEF PROBLEMS THAT THE PARENT

4716
03:08:49,760 --> 03:08:51,160
IS DEALING WITH AND TO TRACK

4717
03:08:51,160 --> 03:08:53,920
THAT NARRATIVE OVER TIME AS A

4718
03:08:53,920 --> 03:08:59,560
WAY TO MAKE THE CGI RATING.

4719
03:08:59,560 --> 03:09:00,800
>>THANK YOU.

4720
03:09:00,800 --> 03:09:01,040
CAITLYN.

4721
03:09:01,040 --> 03:09:01,400
>>THANK YOU.

4722
03:09:01,400 --> 03:09:03,320
I WANTED TO ECHO WHAT A LOT OF

4723
03:09:03,320 --> 03:09:05,920
PEOPLE SAID ABOUT THINKING,

4724
03:09:05,920 --> 03:09:07,680
GRANT AND JORDYN FOR SHARING

4725
03:09:07,680 --> 03:09:09,040
THEIR PERSPECTIVES.

4726
03:09:09,040 --> 03:09:11,760
ONE OF THE THINGS THAT I WAS

4727
03:09:11,760 --> 03:09:13,880
HEARING AS YOU WERE DESCRIBING

4728
03:09:13,880 --> 03:09:16,600
SOME VERY VISCERAL REACTIONS TO

4729
03:09:16,600 --> 03:09:18,120
SOCIAL INTERACTION WHEN'S YOU'RE

4730
03:09:18,120 --> 03:09:21,320
USING DIFFERENT AAC DEVICES AND

4731
03:09:21,320 --> 03:09:25,960
LEARNING WHAT COMMUNICATION

4732
03:09:25,960 --> 03:09:27,040
PIECES WORK FOR YOU.

4733
03:09:27,040 --> 03:09:29,200
IT WAS REMINDING US THAT THESE

4734
03:09:29,200 --> 03:09:32,200
EXPERIENCES HAVE THESE LONG

4735
03:09:32,200 --> 03:09:32,920
LASTING IMPRINTS ON HOW OUR

4736
03:09:32,920 --> 03:09:35,400
BRAINS ARE FORMING AND THOSE

4737
03:09:35,400 --> 03:09:35,720
SUBSTRATES.

4738
03:09:35,720 --> 03:09:37,000
SO REALLY MAKING SURE THAT WHEN

4739
03:09:37,000 --> 03:09:38,240
WE ARE TALKING THROUGH

4740
03:09:38,240 --> 03:09:39,400
INTERVENTIONS, WE ARE THINKING

4741
03:09:39,400 --> 03:09:42,800
ABOUT WAYS OF NOT ONLY PROVIDING

4742
03:09:42,800 --> 03:09:46,000
THE TECHNOLOGY OR THE TECHNIQUES

4743
03:09:46,000 --> 03:09:48,240
TO ENABLE COMMUNICATION, BUT

4744
03:09:48,240 --> 03:09:49,440
THINKING ABOUT THESE

4745
03:09:49,440 --> 03:09:50,520
SOCIALIZATION PROCEDURES.

4746
03:09:50,520 --> 03:09:52,880
SO IF IT'S A MATTER OF HAVING A

4747
03:09:52,880 --> 03:09:54,840
NEW DEVICE, IS THERE A WAY TO

4748
03:09:54,840 --> 03:09:57,920
ALSO BUILD IN THOSE SOCIAL

4749
03:09:57,920 --> 03:10:00,640
SUPPORTS AT THE LOCAL LEVEL IN

4750
03:10:00,640 --> 03:10:02,560
THE CLASSROOM AS WELL AS HAVING

4751
03:10:02,560 --> 03:10:06,800
A QUICK WAY AND EXPLAINING AND

4752
03:10:06,800 --> 03:10:07,080
TEACHING?

4753
03:10:07,080 --> 03:10:08,160
I THINK LEN MENTIONED THIS

4754
03:10:08,160 --> 03:10:08,440
YESTERDAY.

4755
03:10:08,440 --> 03:10:10,800
WE NEED MAKE SURE WE ARE

4756
03:10:10,800 --> 03:10:13,000
TEACHING ETIQUETTE FOR THE OTHER

4757
03:10:13,000 --> 03:10:14,000
SIDE OF THE COMMUNICATION.

4758
03:10:14,000 --> 03:10:17,640
SO IT'S NOT PUTTING EVERYTHING

4759
03:10:17,640 --> 03:10:18,760
BACK ON THE INDIVIDUAL.

4760
03:10:18,760 --> 03:10:20,280
AND THE OTHER UNDERLYING POINT I

4761
03:10:20,280 --> 03:10:21,760
WANT TO EMPHASIZE, YOU TALKED A

4762
03:10:21,760 --> 03:10:23,680
LITTLE BIT ABOUT THIS AND I

4763
03:10:23,680 --> 03:10:25,440
THINK ZACK MENTIONED COMING BACK

4764
03:10:25,440 --> 03:10:28,520
TO THINKING THROUGH THE ETIOLOGY

4765
03:10:28,520 --> 03:10:29,920
AND WE'RE NOT NECESSARILY ALWAYS

4766
03:10:29,920 --> 03:10:31,720
BEING AS INCLUSIVE.

4767
03:10:31,720 --> 03:10:33,360
SO I SPENT A LOT OF TIME LAST

4768
03:10:33,360 --> 03:10:35,120
YEAR DRIVING AROUND THE COUNTRY

4769
03:10:35,120 --> 03:10:40,320
AND WORKING WITH SOME OF OUR

4770
03:10:40,320 --> 03:10:41,800
MINIMALLY VERBAL NON-SPEAKING

4771
03:10:41,800 --> 03:10:43,280
KIDDOS WHO HAVE NEVER REALLY

4772
03:10:43,280 --> 03:10:44,800
SEEN A SPEECH-LANGUAGE

4773
03:10:44,800 --> 03:10:45,640
PATHOLOGIST BECAUSE THEY DON'T

4774
03:10:45,640 --> 03:10:46,600
HAVE ACCESS TO THAT.

4775
03:10:46,600 --> 03:10:49,640
SO A LOT OF US ARE IN OUR URBAN

4776
03:10:49,640 --> 03:10:52,120
HUBS AND WE ARE CREATING THESE

4777
03:10:52,120 --> 03:10:54,680
AMAZING PIECES BUT THINKING

4778
03:10:54,680 --> 03:10:57,080
ABOUT HOW WE ROLLOUT OUR

4779
03:10:57,080 --> 03:10:59,680
INTERVENTIONS AND BUILDING TRULY

4780
03:10:59,680 --> 03:11:01,240
INCLUSIVE PRACTICES TO REDUCE

4781
03:11:01,240 --> 03:11:02,720
THOSE FEELINGS OF SEGREGATION

4782
03:11:02,720 --> 03:11:05,480
THAT JORDYN MENTIONED.

4783
03:11:05,480 --> 03:11:08,400
AND I THINK IT WILL BE

4784
03:11:08,400 --> 03:11:12,040
ABSOLUTELY CRITICAL TO CREATING

4785
03:11:12,040 --> 03:11:13,320
WELL-BEING IN AS MANY FOLKS AS

4786
03:11:13,320 --> 03:11:14,800
WE CAN.

4787
03:11:14,800 --> 03:11:19,760
>>JUDITH COOPER: THANK
YOU.

4788
03:11:19,760 --> 03:11:22,480
DANNY.

4789
03:11:22,480 --> 03:11:25,040
>>DANNY: CAN YOU YOU HEAR
ME?

4790
03:11:25,040 --> 03:11:26,600
I'LL BE QUICK.

4791
03:11:26,600 --> 03:11:29,640
I WANTED TO SHARE THREE

4792
03:11:29,640 --> 03:11:30,800
OBSERVATIONS BASED ON ALL OF THE

4793
03:11:30,800 --> 03:11:33,320
EXCITING THINGS I HEARD TODAY.

4794
03:11:33,320 --> 03:11:35,320
MY FIRST ONE IS IN RESPONSE TO

4795
03:11:35,320 --> 03:11:37,960
THE EXCITEMENT BY LARRY, LEN AND

4796
03:11:37,960 --> 03:11:39,640
OTHERS ON MULTICOMPONENT

4797
03:11:39,640 --> 03:11:39,960
INTERVENTIONS.

4798
03:11:39,960 --> 03:11:42,800
I WANTED TO SHARE THAT BASED ON

4799
03:11:42,800 --> 03:11:46,080
MY 22 YEARS OF RESEARCH, IN

4800
03:11:46,080 --> 03:11:47,200
ACTUAL PRACTICE SETTINGS, OKAY,

4801
03:11:47,200 --> 03:11:49,640
SO I'M TALKING ABOUT IN ACTUAL

4802
03:11:49,640 --> 03:11:52,120
PRACTICE SETTINGS, ALMOST ALL

4803
03:11:52,120 --> 03:11:53,800
INTERVENTIONS I HAVE EVER SEEN

4804
03:11:53,800 --> 03:11:57,600
OR WORKED ON ARE MULTICOMPONENT.

4805
03:11:57,600 --> 03:11:57,800
OKAY?

4806
03:11:57,800 --> 03:11:58,320
HANDS DOWN.

4807
03:11:58,320 --> 03:11:59,800
AND I DIDN'T SAY ALL OF THEM

4808
03:11:59,800 --> 03:12:01,840
BECAUSE WE MIGHT GET LUCKY AND

4809
03:12:01,840 --> 03:12:03,560
BE ABLE TO FIND ONE OR TWO.

4810
03:12:03,560 --> 03:12:06,440
BUT ALMOST ALL OF THEM ARE

4811
03:12:06,440 --> 03:12:06,800
MULTICOMPONENT.

4812
03:12:06,800 --> 03:12:07,680
AND I THINK ONE REASON WE MIGHT

4813
03:12:07,680 --> 03:12:11,160
BE SEEING THIS AS A NOVELTY IS

4814
03:12:11,160 --> 03:12:12,320
BECAUSE MANY OF US ARE TRAINED

4815
03:12:12,320 --> 03:12:13,520
IN EFFICACY RESEARCH WHERE THE

4816
03:12:13,520 --> 03:12:16,200
GOAL IS TO ISOLATE ONE STINGEL

4817
03:12:16,200 --> 03:12:20,080
THING AND CONTROL THE REST OF

4818
03:12:20,080 --> 03:12:20,560
THE WORLD.

4819
03:12:20,560 --> 03:12:24,680
SO THAT BRINGS ME TO MY SECOND

4820
03:12:24,680 --> 03:12:25,240
COMMENT.

4821
03:12:25,240 --> 03:12:28,680
MY SECOND INNOCENT TARGETED AT

4822
03:12:28,680 --> 03:12:29,800
JUDITH BUT MAYBE ALSO ALL OF US

4823
03:12:29,800 --> 03:12:30,080
SCIENTISTS.

4824
03:12:30,080 --> 03:12:30,760
I REALLY.

4825
03:12:30,760 --> 03:12:33,160
TO GET MORE SERIOUS IN OUR

4826
03:12:33,160 --> 03:12:36,080
AUTISM RESEARCH ABOUT THE

4827
03:12:36,080 --> 03:12:38,520
HANDOFF FROM EFFICACY TO

4828
03:12:38,520 --> 03:12:40,080
EFFECTIVENESS TO IMPLEMENTATION.

4829
03:12:40,080 --> 03:12:42,440
WE ALL LOVE THE TRANSLATIONAL

4830
03:12:42,440 --> 03:12:43,520
MODEL BUT I THINK WE'RE NOT

4831
03:12:43,520 --> 03:12:44,880
DOING A GREAT JOB OF IT.

4832
03:12:44,880 --> 03:12:46,880
AND THERE IS SO MUCH WE CAN DO

4833
03:12:46,880 --> 03:12:49,960
THAT IS NOT THAT HARD IN AUTISM

4834
03:12:49,960 --> 03:12:53,800
TO SORT OF SPEED UP THAT TRACK.

4835
03:12:53,800 --> 03:12:54,760
OKAY?

4836
03:12:54,760 --> 03:12:57,240
AND LET ME STOP THERE BECAUSE I

4837
03:12:57,240 --> 03:12:59,040
THINK WHAT ENDS UP HAPPENING IS,

4838
03:12:59,040 --> 03:13:00,560
AS WE MOVE DOWN THAT

4839
03:13:00,560 --> 03:13:02,800
TRANSLATIONAL TRACK, THINGS GET

4840
03:13:02,800 --> 03:13:03,840
MORE MULTICOMPONENT AND MORE

4841
03:13:03,840 --> 03:13:05,840
REAL AND MORE EXCITING BUT ALSO,

4842
03:13:05,840 --> 03:13:09,040
THIS IS KEY, JUDITH, NEWER IDEAS

4843
03:13:09,040 --> 03:13:10,320
ARE NEEDED.

4844
03:13:10,320 --> 03:13:12,080
AND THIS WHOLE IDEA THAT I

4845
03:13:12,080 --> 03:13:15,080
SHARED WITH YOU EARLIER ABOUT

4846
03:13:15,080 --> 03:13:17,240
OPTIMIZATION BECOMES EVER MORE

4847
03:13:17,240 --> 03:13:19,320
IMPORTANT AS WE MOVE INTO

4848
03:13:19,320 --> 03:13:20,400
EFFECTIVENESS AND

4849
03:13:20,400 --> 03:13:20,760
IMPLEMENTATION.

4850
03:13:20,760 --> 03:13:22,120
BECAUSE NOW THE RESEARCH IS NOT

4851
03:13:22,120 --> 03:13:23,960
ABOUT ISOLATING THIS ONE LITTLE

4852
03:13:23,960 --> 03:13:25,960
THING IN SOME LABORATORY AND IF

4853
03:13:25,960 --> 03:13:27,280
YOU FORCE EVERYONE TO TAKE THE

4854
03:13:27,280 --> 03:13:30,200
MED, YOU FIND THAT IT WORKS.

4855
03:13:30,200 --> 03:13:30,720
THAT'S GREAT.

4856
03:13:30,720 --> 03:13:31,880
I DON'T HAVE A PROBLEM WITH

4857
03:13:31,880 --> 03:13:32,080
THAT.

4858
03:13:32,080 --> 03:13:33,800
BUT AS WE MOVE INTO THE REAL

4859
03:13:33,800 --> 03:13:37,000
WORLD, WE ARE REALLY TRYING TO

4860
03:13:37,000 --> 03:13:39,160
ASSEMBLE AND CONSTRUCT

4861
03:13:39,160 --> 03:13:39,760
REAL-WORLD INTERVENTIONS THAT

4862
03:13:39,760 --> 03:13:40,800
HAVE VARIOUS MOVING PARTS.

4863
03:13:40,800 --> 03:13:44,440
AND I JUST NEED US IN AUTISM TO

4864
03:13:44,440 --> 03:13:46,160
LET GO OF -- THERE IS ONLY ONE

4865
03:13:46,160 --> 03:13:48,560
WAY TO DO THAT KIND OF RESEARCH.

4866
03:13:48,560 --> 03:13:49,880
I'LL STOP THERE AND I HOPE THAT

4867
03:13:49,880 --> 03:13:51,480
WAS PROVOCATIVE AND EXCITING FOR

4868
03:13:51,480 --> 03:13:51,800
YOU.

4869
03:13:51,800 --> 03:13:55,160
>>CAN I JUST SAY AMEN!

4870
03:13:55,160 --> 03:13:56,200
[ LAUGHS ]

4871
03:13:56,200 --> 03:13:58,440
>>JUDITH COOPER: THANK
YOU,

4872
03:13:58,440 --> 03:13:58,720
BOTH.

4873
03:13:58,720 --> 03:14:02,640
WE ARE LISTENING.

4874
03:14:02,640 --> 03:14:03,000
STEPHEN?

4875
03:14:03,000 --> 03:14:06,440
>>STEPHEN CAMARATA:
SOMETIMES I

4876
03:14:06,440 --> 03:14:07,200
HAVE A LOT OF POPULATION AROUND

4877
03:14:07,200 --> 03:14:10,800
ISSUES AND I REALLY WANT TO PUT

4878
03:14:10,800 --> 03:14:12,840
OUT -- PASSION -- THIS NOTION OF

4879
03:14:12,840 --> 03:14:14,760
DISABILITY AND TURN IT ON ITS

4880
03:14:14,760 --> 03:14:15,160
HEAD.

4881
03:14:15,160 --> 03:14:16,480
WHEN I'M FORTUNATE ENOUGH TO

4882
03:14:16,480 --> 03:14:19,160
MEET A FAMILY AND A PERSON WITH

4883
03:14:19,160 --> 03:14:20,000
QUOTE/UNQUOTE INTELLECTUAL

4884
03:14:20,000 --> 03:14:21,200
DISABILITY, IT MEANS TO ME

4885
03:14:21,200 --> 03:14:22,480
SIMPLY THAT I'M GOING TO HAVE TO

4886
03:14:22,480 --> 03:14:24,120
WORK HARDER TO BE MORE FOCUSED

4887
03:14:24,120 --> 03:14:26,920
AND BE BETTER AT HELPING THAT

4888
03:14:26,920 --> 03:14:27,960
PERSON WITH COMMUNICATION OR

4889
03:14:27,960 --> 03:14:29,960
WHATEVER IT IS THEY NEED.

4890
03:14:29,960 --> 03:14:33,120
BECAUSE THERE IS A HIGHER PRICE

4891
03:14:33,120 --> 03:14:34,560
TO THAT KNOWLEDGE.

4892
03:14:34,560 --> 03:14:38,000
AND SO, TO ME, I DON'T WANT TO

4893
03:14:38,000 --> 03:14:39,880
SEE IT AS EXCLUSIONARY OR

4894
03:14:39,880 --> 03:14:40,400
LIMITING.

4895
03:14:40,400 --> 03:14:42,120
I WANT TO SEE IT AS SAYING,

4896
03:14:42,120 --> 03:14:43,440
LOOK, THIS PERSON IS GOING TO

4897
03:14:43,440 --> 03:14:44,360
TAKE LONGER.

4898
03:14:44,360 --> 03:14:45,640
THEY HAVE MORE NEEDS.

4899
03:14:45,640 --> 03:14:48,480
AND SO I HAVE TO BE REALLY GOOD

4900
03:14:48,480 --> 03:14:48,840
AT PRIORITIZING.

4901
03:14:48,840 --> 03:14:50,560
I HAVE TO BE REALLY EFFICIENT IN

4902
03:14:50,560 --> 03:14:53,440
THE TEACHING AND IT MAY INVOLVE

4903
03:14:53,440 --> 03:14:54,960
THESE MULTIPLE COMPONENTS,

4904
03:14:54,960 --> 03:14:56,640
THINGS WE TALKED ABOUT.

4905
03:14:56,640 --> 03:14:58,760
BUT I JUST DON'T LIKE THINKING

4906
03:14:58,760 --> 03:15:00,200
ABOUT THIS AS A LIMITING FACTOR.

4907
03:15:00,200 --> 03:15:03,920
I WANT TO THINK ABOUT IT AS OH,

4908
03:15:03,920 --> 03:15:04,360
MY GOSH!

4909
03:15:04,360 --> 03:15:07,200
ONE OF MY CHILDREN HAS SEVERE

4910
03:15:07,200 --> 03:15:07,760
RECEPTIVE LANGUAGE DISORDER

4911
03:15:07,760 --> 03:15:09,520
GROWING UP AND IT TOOK ME FAST

4912
03:15:09,520 --> 03:15:09,760
MAPPING.

4913
03:15:09,760 --> 03:15:10,760
IT WAS SLOW MAPPING.

4914
03:15:10,760 --> 03:15:12,360
IT TOOK 5 HELPED PRESENTATIONS

4915
03:15:12,360 --> 03:15:14,000
TO GET HIM TO REMEMBER A WORD

4916
03:15:14,000 --> 03:15:16,480
FROM ONE DAY TO THE NEXT.

4917
03:15:16,480 --> 03:15:19,040
AND -- 500 -- SO HI TO BE VERY

4918
03:15:19,040 --> 03:15:19,840
EFFICIENT ABOUT WHAT I WAS DOING

4919
03:15:19,840 --> 03:15:21,040
AND HOW I WAS DOING IT.

4920
03:15:21,040 --> 03:15:23,160
AND BY THE WAY, HE WAS

4921
03:15:23,160 --> 03:15:24,280
MISIDENTIFIED AS INTELLECTUAL

4922
03:15:24,280 --> 03:15:26,480
DISABILITY BACK THEN.

4923
03:15:26,480 --> 03:15:27,440
BUT MY POINT IS THAT I DON'T

4924
03:15:27,440 --> 03:15:30,240
WANT TO TALK ABOUT THAT WAY.

4925
03:15:30,240 --> 03:15:31,880
I DON'T WANT TO ACCEPT THE

4926
03:15:31,880 --> 03:15:32,120
PREMISE.

4927
03:15:32,120 --> 03:15:34,600
I WANT TO SAY LOOK, EVERYBODY

4928
03:15:34,600 --> 03:15:34,880
CAN LEARN.

4929
03:15:34,880 --> 03:15:35,840
EVERYBODY -- WE CAN BUILD WITH

4930
03:15:35,840 --> 03:15:36,320
EVERYBODY.

4931
03:15:36,320 --> 03:15:38,320
AND WHAT THIS GROUP NEEDS TO DO

4932
03:15:38,320 --> 03:15:39,480
IS TO GIVE PEOPLE THE TOOLESS TO

4933
03:15:39,480 --> 03:15:41,240
DO THAT IN THE MOST EFFECTIVE

4934
03:15:41,240 --> 03:15:43,520
AND EFFICIENT WAY, ESPECIALLY

4935
03:15:43,520 --> 03:15:44,880
WHEN WE KNOW IT'S GOING TO BE A

4936
03:15:44,880 --> 03:15:47,200
HIGHER COST TO TEACHING AND

4937
03:15:47,200 --> 03:15:49,400
LEARNING.

4938
03:15:49,400 --> 03:15:49,800
THAT'S MY RANT.

4939
03:15:49,800 --> 03:15:50,440
>>THANK YOU, STEPHEN.

4940
03:15:50,440 --> 03:15:53,440
IT'S NOT A RANT AT ALL.

4941
03:15:53,440 --> 03:15:53,680
COURTNEY.

4942
03:15:53,680 --> 03:15:55,440
>>I'M GOING TO REPEAT
MYSELF

4943
03:15:55,440 --> 03:15:57,840
SLIGHTLY BUT I REALLY WANT TO

4944
03:15:57,840 --> 03:15:59,240
EMPHASIZE WITH CATHY LORD SAID

4945
03:15:59,240 --> 03:16:00,880
ABOUT THE NEED TO REALLY THINK

4946
03:16:00,880 --> 03:16:02,720
BIG AND LOOK AT SYSTEMIC THINGS

4947
03:16:02,720 --> 03:16:05,440
WE CAN DO TO MOVE THIS FORWARD.

4948
03:16:05,440 --> 03:16:07,720
I THINK I MENTIONED YESTERDAY

4949
03:16:07,720 --> 03:16:08,400
THESE INITIATIVES AND

4950
03:16:08,400 --> 03:16:09,880
DEVELOPMENTAL PSYCHOLOGY AND

4951
03:16:09,880 --> 03:16:11,840
EXPERIMENTAL PSYCHOLOGY, MANY

4952
03:16:11,840 --> 03:16:13,200
BABIES, MANY LABS, WHERE THEY

4953
03:16:13,200 --> 03:16:15,280
HAVE SET PROTOCOLS AND THEY GET

4954
03:16:15,280 --> 03:16:17,520
LABS ALL OVER THE WORLD TO TRY

4955
03:16:17,520 --> 03:16:19,320
AND REPLICATE STUDIES.

4956
03:16:19,320 --> 03:16:24,280
AND I THINK THIS IS SUCH A

4957
03:16:24,280 --> 03:16:25,440
FASCINATING PROGRAM OF RESEARCH

4958
03:16:25,440 --> 03:16:28,120
THAT HAS A HUGE NUMBER OF

4959
03:16:28,120 --> 03:16:28,400
BENEFITS.

4960
03:16:28,400 --> 03:16:30,160
ONE, YOU CAN GET ENDS,

4961
03:16:30,160 --> 03:16:31,720
SUFFICIENT ENDS TO SAY THINGS

4962
03:16:31,720 --> 03:16:34,240
ABOUT MEASUREMENTS AND ABOUT

4963
03:16:34,240 --> 03:16:35,280
INDIVIDUAL DIFFERENCES AND

4964
03:16:35,280 --> 03:16:36,200
RESPONSE TO TREATMENT.

4965
03:16:36,200 --> 03:16:38,320
YOU CAN LOOK AT CONTEXTURAL

4966
03:16:38,320 --> 03:16:38,520
EFFECTS.

4967
03:16:38,520 --> 03:16:41,520
YOU CAN DEFINITELY INCREASE YOUR

4968
03:16:41,520 --> 03:16:41,800
DIVERSITY.

4969
03:16:41,800 --> 03:16:45,000
AND IT ALSO MAKES RESOURCES

4970
03:16:45,000 --> 03:16:46,320
AVAILABLE TO COUNTRIES AND TO

4971
03:16:46,320 --> 03:16:48,160
RESEARCHERS WHO MIGHT NOT HAVE

4972
03:16:48,160 --> 03:16:50,560
THOSE RESOURCES INCLUDING EARLY

4973
03:16:50,560 --> 03:16:51,560
CAREER RESEARCHERS.

4974
03:16:51,560 --> 03:16:53,400
SO I JUST THINK IT'S A WIN-WIN.

4975
03:16:53,400 --> 03:16:55,160
AND THIS SEEMS LIKE A FORUM

4976
03:16:55,160 --> 03:16:56,360
WHERE YOU COULD GET SOME

4977
03:16:56,360 --> 03:16:57,760
AGREEMENT ON KIND OF KEY THINGS

4978
03:16:57,760 --> 03:17:01,040
THAT YOU MIGHT WANT TO PUSH FOR

4979
03:17:01,040 --> 03:17:02,000
REPLICATION AND WHERE YOU CAN

4980
03:17:02,000 --> 03:17:03,400
POOL DATA AND WHERE YOU CAN

4981
03:17:03,400 --> 03:17:05,720
BUILD ON THE EXPERTISE OF PEOPLE

4982
03:17:05,720 --> 03:17:08,120
WHO ARE DOING META-ANALYSIS AND

4983
03:17:08,120 --> 03:17:09,680
LOOKING AT MEASUREMENT ON A

4984
03:17:09,680 --> 03:17:11,480
REALLY BIG SCALE.

4985
03:17:11,480 --> 03:17:13,080
AND I THINK THAT WOULD BE SUCH A

4986
03:17:13,080 --> 03:17:15,040
VALUABLE THING TO DO TO PUSH

4987
03:17:15,040 --> 03:17:16,960
THIS AGENDA FORWARD.

4988
03:17:16,960 --> 03:17:22,080
>>THANK YOU, COURTNEY.

4989
03:17:22,080 --> 03:17:24,400
LYNNE:.

4990
03:17:24,400 --> 03:17:26,000
>>I WANT TO PUSH BACK ON
A

4991
03:17:26,000 --> 03:17:27,200
COUPLE OF THINGS A LITTLE BIT.

4992
03:17:27,200 --> 03:17:29,400
I MEAN, I THINK ONE OF THE

4993
03:17:29,400 --> 03:17:30,760
REASONS THAT I THINK IT WOULD BE

4994
03:17:30,760 --> 03:17:33,920
USEFUL TO FIGURE OUT DESIGNS IN

4995
03:17:33,920 --> 03:17:36,320
WHICH WE CANNOT ONLY DO

4996
03:17:36,320 --> 03:17:38,080
INTERVENTIONS BUT LOOK AT THE

4997
03:17:38,080 --> 03:17:40,240
PSYCHOMETRIC PROPERTIES OF

4998
03:17:40,240 --> 03:17:41,400
OUTCOME MEASURES, IS BECAUSE WE

4999
03:17:41,400 --> 03:17:43,880
REALLY NEED TO AGGREGATE ACROSS

5000
03:17:43,880 --> 03:17:44,120
STUDIES.

5001
03:17:44,120 --> 03:17:47,240
I THINK THAT'S JUST A REALITY.

5002
03:17:47,240 --> 03:17:49,320
AND I THINK THE MORE THAT WE CAN

5003
03:17:49,320 --> 03:17:50,960
ACCOMPLISH MORE IN ONE STUDY --

5004
03:17:50,960 --> 03:17:52,720
WE DON'T WANT TO DO SLOPPY

5005
03:17:52,720 --> 03:17:52,960
RESEARCH.

5006
03:17:52,960 --> 03:17:55,240
BUT IT MAY BE WE NEED TO THINK

5007
03:17:55,240 --> 03:17:56,320
OF NEW DESIGNS.

5008
03:17:56,320 --> 03:17:58,840
THAT'S ESPECIALLY IMPORTANT

5009
03:17:58,840 --> 03:18:00,480
BECAUSE ONE OF THE PROBLEMS WE

5010
03:18:00,480 --> 03:18:03,080
HAVE WITH EVALUATING NEW OUTCOME

5011
03:18:03,080 --> 03:18:04,960
MEASURES IS ARE THEY SENSITIVE

5012
03:18:04,960 --> 03:18:05,640
TO CHANGE?

5013
03:18:05,640 --> 03:18:08,000
IF WE EMBED THIS IN THESE

5014
03:18:08,000 --> 03:18:09,200
INTERVENTIONS, WE CAN BEGIN TO

5015
03:18:09,200 --> 03:18:09,840
ASK THAT QUESTION.

5016
03:18:09,840 --> 03:18:11,880
I'M NOT GOING TO PRETEND TO

5017
03:18:11,880 --> 03:18:14,160
UNDERSTAND ALL THE NUANCES OF

5018
03:18:14,160 --> 03:18:16,320
CLINICAL TRIAL DESIGN AND LARRY

5019
03:18:16,320 --> 03:18:17,320
PROBABLY KNOW SYSTEM MORE ABOUT

5020
03:18:17,320 --> 03:18:19,600
THAT THAN I WILL EVEREVER KNOW.

5021
03:18:19,600 --> 03:18:20,960
BUT I THINK IT'S A CHALLENGE FOR

5022
03:18:20,960 --> 03:18:21,200
US.

5023
03:18:21,200 --> 03:18:23,160
AND I THINK THE OTHER THING -- I

5024
03:18:23,160 --> 03:18:27,120
AGREE WITH DANIELLE ABOUT THE

5025
03:18:27,120 --> 03:18:28,160
MULTICOMPONENT INTERVENTIONS

5026
03:18:28,160 --> 03:18:29,080
REFLECTED OF PRACTICE.

5027
03:18:29,080 --> 03:18:32,000
THE PROBLEM WITH THAT IS OFTEN

5028
03:18:32,000 --> 03:18:33,000
THESE MULTICOMPONENTS IN

5029
03:18:33,000 --> 03:18:34,280
PRACTICE ARE NOT DRIVEN BY

5030
03:18:34,280 --> 03:18:34,680
EVIDENCE.

5031
03:18:34,680 --> 03:18:37,000
I MEAN WE SEE THAT WITH

5032
03:18:37,000 --> 03:18:37,680
POLYPHARMACY WHERE WHO KNOWS

5033
03:18:37,680 --> 03:18:39,640
WHAT IS GETTING ADDED ON AND WHY

5034
03:18:39,640 --> 03:18:42,440
THINGS ARE BEING TAKEN OFF.

5035
03:18:42,440 --> 03:18:43,600
AND I THINK THE EXPERIMENTAL

5036
03:18:43,600 --> 03:18:46,480
APPROACH WHERE WE STILL TRY TO

5037
03:18:46,480 --> 03:18:48,680
DISENTANGLE THESE EFFECTS, IS

5038
03:18:48,680 --> 03:18:49,880
STILL USEFUL.

5039
03:18:49,880 --> 03:18:51,600
AND MAYBE EVEN MORE MOTIVATED

5040
03:18:51,600 --> 03:18:53,000
BECAUSE THAT REFLECTS THE

5041
03:18:53,000 --> 03:18:54,240
REALITY.

5042
03:18:54,240 --> 03:18:57,320
AND SO, THEN I THINK THE LAST

5043
03:18:57,320 --> 03:18:58,760
THING IS MAYBE AN ADDITIONAL

5044
03:18:58,760 --> 03:19:00,960
POINT AND THIS FOLLOWS UP ON

5045
03:19:00,960 --> 03:19:04,240
SOMETHING THAT STEVE SAID.

5046
03:19:04,240 --> 03:19:09,000
SOME COLLEAGUE OF MINE, JUST

5047
03:19:09,000 --> 03:19:09,600
PUBLISHED A PAREN WHERE SHE

5048
03:19:09,600 --> 03:19:10,560
AGGREGATED SOME OF OUR

5049
03:19:10,560 --> 03:19:14,240
INTERVENTION DATA AND LOOKED AT

5050
03:19:14,240 --> 03:19:15,200
MEASURES OF PARENT'S WELL-BEING

5051
03:19:15,200 --> 03:19:18,440
AND STRESS AT THE BEGINNING, AT

5052
03:19:18,440 --> 03:19:19,960
BASELINE AND WHAT SHE FOUND IS

5053
03:19:19,960 --> 03:19:21,800
THERE WAS SOME EVIDENCE THAT

5054
03:19:21,800 --> 03:19:24,000
PARENTS -- IS THIS SHOULDN'T BE

5055
03:19:24,000 --> 03:19:24,320
SURPRISING.

5056
03:19:24,320 --> 03:19:24,920
PARENTS WERE MORE STRESSED AND

5057
03:19:24,920 --> 03:19:27,960
PERHAPS HAD MORE EMOTIONAL

5058
03:19:27,960 --> 03:19:31,200
CHALLENGES AT THE START OF THE

5059
03:19:31,200 --> 03:19:32,400
INTERVENTION AND ARE SLOWER TO

5060
03:19:32,400 --> 03:19:34,040
LEARN THE INTERVENTION AND LESS

5061
03:19:34,040 --> 03:19:36,400
LIKELY TO IMPLEMENT IT AND THEIR

5062
03:19:36,400 --> 03:19:37,520
CHILDREN MAKE LESS PROGRESS.

5063
03:19:37,520 --> 03:19:42,000
AND SO, THIS IS NOT THE

5064
03:19:42,000 --> 03:19:42,600
PATHOLOGIZE PARENTS BUT I THINK

5065
03:19:42,600 --> 03:19:44,280
IT POINTS TO THE FACT THAT WE

5066
03:19:44,280 --> 03:19:45,880
REALLY NEED FAMILY SYSTEMS

5067
03:19:45,880 --> 03:19:47,400
APPROACH TO INTERVENTIONS TO

5068
03:19:47,400 --> 03:19:49,040
UNDERSTAND WHERE WE NEED TO

5069
03:19:49,040 --> 03:19:50,400
INTERVENE, HOW WE CAN SUPPORT

5070
03:19:50,400 --> 03:19:51,920
FAMILIES OPTIMALLY, WHEN IS THE

5071
03:19:51,920 --> 03:19:54,160
RIGHT TIME TO ASK THEM TO HELP

5072
03:19:54,160 --> 03:19:55,640
WITH THERAPIES AND THINGS LIKE

5073
03:19:55,640 --> 03:19:55,840
THAT?

5074
03:19:55,840 --> 03:19:58,120
AND YOU KNOW, WE CONTINUE TO

5075
03:19:58,120 --> 03:20:00,320
HAVE THIS FOCUS ONLY ON THE

5076
03:20:00,320 --> 03:20:01,720
CHILD, WHICH MAKES SENSE.

5077
03:20:01,720 --> 03:20:05,520
BUT ULTIMATELY THAT MAY NOT

5078
03:20:05,520 --> 03:20:07,200
BE -- GET US THE BIGGEST BANG

5079
03:20:07,200 --> 03:20:08,760
FOR OUR BUCK IN TERMS OF

5080
03:20:08,760 --> 03:20:09,240
INTERVENTION.

5081
03:20:09,240 --> 03:20:10,880
WE NEED TO LOOK AT THE WHOLE

5082
03:20:10,880 --> 03:20:13,360
FAMILY AS THE SOURCE OF SUPPORT

5083
03:20:13,360 --> 03:20:14,600
FOR AN INDIVIDUAL CHILD.

5084
03:20:14,600 --> 03:20:24,240
>>THANK YOU, LEN.

5085
03:20:24,240 --> 03:20:26,280
ELAN?

5086
03:20:26,280 --> 03:20:29,480
>>I DON'T KNOW MY TIMING
WAS

5087
03:20:29,480 --> 03:20:30,480
SPEAKING COULDN'T BE ABOUT

5088
03:20:30,480 --> 03:20:32,560
BETTER AFTER INTERVENTION OF

5089
03:20:32,560 --> 03:20:35,240
STEPHEN AND INTERVENTION OF

5090
03:20:35,240 --> 03:20:40,160
TRAUMA SPEAKING AS PARENT.

5091
03:20:40,160 --> 03:20:43,040
I CAN ONLY AGREE TO WHAT HAS

5092
03:20:43,040 --> 03:20:44,160
BEEN SAID.

5093
03:20:44,160 --> 03:20:48,040
THE PHENOTYPING IS VERY

5094
03:20:48,040 --> 03:20:48,320
IMPORTANT.

5095
03:20:48,320 --> 03:20:51,920
THE ROLE OF THE PARTICIPATORY

5096
03:20:51,920 --> 03:20:54,320
RESEARCH WITH THE PARENTS, I

5097
03:20:54,320 --> 03:20:57,320
MEAN IT'S GREAT IT'S ALSO AN

5098
03:20:57,320 --> 03:21:01,080
ENORMOUS RESPONSIBILITY THAT IS

5099
03:21:01,080 --> 03:21:03,920
PUT ON THE PARENTS SHOULDERS WHO

5100
03:21:03,920 --> 03:21:05,200
MIGHT THINK THAT THEY ARE UP TO

5101
03:21:05,200 --> 03:21:05,720
DO IT.

5102
03:21:05,720 --> 03:21:09,200
THEY WANT TO DO IT, BUT IT'S AN

5103
03:21:09,200 --> 03:21:10,360
ENORMOUS CHALLENGE WHEN AT THE

5104
03:21:10,360 --> 03:21:12,440
SAME TIME THEY HAVE TO TAKE CARE

5105
03:21:12,440 --> 03:21:14,080
OF THE KID BEING SICK, THE KID

5106
03:21:14,080 --> 03:21:16,440
NOT EATING, THE KID HAVING

5107
03:21:16,440 --> 03:21:17,200
TOILETING PROBLEM.

5108
03:21:17,200 --> 03:21:18,600
THE PROBLEM WITH THE TEACHER.

5109
03:21:18,600 --> 03:21:20,200
THE PROBLEM WITH THE -- SO IT'S

5110
03:21:20,200 --> 03:21:21,440
AN ENORMOUS CHALLENGE.

5111
03:21:21,440 --> 03:21:24,480
THE FEELING OF FAILURE OF THE

5112
03:21:24,480 --> 03:21:26,840
PARENTS IS ENORMOUS.

5113
03:21:26,840 --> 03:21:29,600
ESPECIALLY WHEN THE NEW

5114
03:21:29,600 --> 03:21:32,840
APPROACHES ARE SUPPOSED TO BE

5115
03:21:32,840 --> 03:21:34,400
THIS MARVELOUS THING THAT IS

5116
03:21:34,400 --> 03:21:36,480
GOING TO SOLVE THE PROBLEM AND

5117
03:21:36,480 --> 03:21:39,560
WHEN YOUR KID DOESN'T PROGRESS,

5118
03:21:39,560 --> 03:21:42,240
THE PARENTS NOT ONLY -- YOU MAKE

5119
03:21:42,240 --> 03:21:44,160
IT MUCH HARDER FOR THE PARENTS

5120
03:21:44,160 --> 03:21:48,000
TO CONTINUE PARTICIPATING.

5121
03:21:48,000 --> 03:21:50,440
AND ALMOST -- AND SO MUCH MORE

5122
03:21:50,440 --> 03:21:52,240
DIFFICULT FOR THE CHILD WHEN YOU

5123
03:21:52,240 --> 03:21:56,400
HAVE TO SWITCH TO ANOTHER

5124
03:21:56,400 --> 03:21:56,680
APPROACH.

5125
03:21:56,680 --> 03:22:01,560
THE IDEA OF THE MULTICOMPONENT

5126
03:22:01,560 --> 03:22:03,600
INTERVENTION IS ALSO GREAT AND I

5127
03:22:03,600 --> 03:22:05,560
THINK WHAT DANIELLE SAID YES,

5128
03:22:05,560 --> 03:22:07,440
MOST OF THEM ARE.

5129
03:22:07,440 --> 03:22:12,320
BUT VERY OFTEN IT'S AGAINST THE

5130
03:22:12,320 --> 03:22:18,800
WILL OF THE PEOPLE THAT ARE VERY

5131
03:22:18,800 --> 03:22:20,760
OFTEN, ENTHUSIASTIC ABOUT THEIR

5132
03:22:20,760 --> 03:22:23,920
METHOD AND THEY -- THEIR METHOD

5133
03:22:23,920 --> 03:22:28,360
IS GOING TO BE -UE KNOW, SOLVING

5134
03:22:28,360 --> 03:22:29,480
THE PROBLEMMA AND NOT TO BLAME

5135
03:22:29,480 --> 03:22:30,800
THEM BECAUSE WE WANT THE

5136
03:22:30,800 --> 03:22:33,080
RESEARCH TO BE ENTHUSIASTIC.

5137
03:22:33,080 --> 03:22:36,160
BURR IT'S VERY DIFFICULT TO HAVE

5138
03:22:36,160 --> 03:22:39,480
MULTICOMPONENT APPROACHES AND

5139
03:22:39,480 --> 03:22:40,680
ESPECIALLY IF SOMEBODY WANTS TO

5140
03:22:40,680 --> 03:22:44,720
GET SCIENTIFIC DATA OUT OF IT.

5141
03:22:44,720 --> 03:22:48,120
WHAT IS INFLUENCING WHAT IN THE

5142
03:22:48,120 --> 03:22:48,320
OUTCOME?

5143
03:22:48,320 --> 03:22:50,360
SO BEATING UP ON THE -- ABOUT

5144
03:22:50,360 --> 03:22:54,000
THE TRAUMA, ABOUT WHAT LEN SAID,

5145
03:22:54,000 --> 03:22:55,600
ABOUT WHAT STEPHEN SAID, ABOUT

5146
03:22:55,600 --> 03:23:01,640
WHAT JORDYN AND GRANT SAID.

5147
03:23:01,640 --> 03:23:03,640
THERE IS A LOT TO DO BUT THINK

5148
03:23:03,640 --> 03:23:07,240
ABOUT THE STAKEHOLDER PARENTS.

5149
03:23:07,240 --> 03:23:09,480
THEIR ROLE YOU HAVE TO BE REALLY

5150
03:23:09,480 --> 03:23:12,280
CAREFUL WHAT THEY CAN UNDERTAKE,

5151
03:23:12,280 --> 03:23:15,280
WHAT THEY ARE ABLE TO, AND ALSO

5152
03:23:15,280 --> 03:23:18,840
THE FEELING OF FAILURE SHOULD

5153
03:23:18,840 --> 03:23:21,720
NOT DETOUR THEM TO TRY OTHER

5154
03:23:21,720 --> 03:23:22,040
APPROACHES.

5155
03:23:22,040 --> 03:23:23,520
IF THE ONE THAT WAS IN FRONT OF

5156
03:23:23,520 --> 03:23:25,400
THEM IS NOT SUCCESSFUL.

5157
03:23:25,400 --> 03:23:28,160
OKAY, I'M NOT GOING TO SPEAK

5158
03:23:28,160 --> 03:23:28,960
ANYMORE.

5159
03:23:28,960 --> 03:23:29,480
>>THANK YOU.

5160
03:23:29,480 --> 03:23:31,280
CAN I INTERSEABLITE?

5161
03:23:31,280 --> 03:23:35,200
SO JORDYN WANTS TO RESPOND TO

5162
03:23:35,200 --> 03:23:36,600
STEPHEN'S COMMENT.

5163
03:23:36,600 --> 03:23:37,400
SO I'LL TREAD FOR HER.

5164
03:23:37,400 --> 03:23:40,240
I WANT TO EMPHASIZE AND ADD WE

5165
03:23:40,240 --> 03:23:42,680
ALSO DON'T KNOW IF SOMEONE HAS

5166
03:23:42,680 --> 03:23:44,080
AN INTELLECTUAL DISABILITY IF

5167
03:23:44,080 --> 03:23:47,960
THEY DON'T HAVE ACCESS TO ROBUST

5168
03:23:47,960 --> 03:23:48,200
AAC.

5169
03:23:48,200 --> 03:23:50,680
AND IB EFFECTIVE COMMUNICATION

5170
03:23:50,680 --> 03:23:51,920
SYSTEMS OFTEN CAUSE PEOPLE TO

5171
03:23:51,920 --> 03:23:53,920
ASSUME AN INTELLECTUAL

5172
03:23:53,920 --> 03:23:54,760
DISABILITY.

5173
03:23:54,760 --> 03:23:56,080
IQ TESTS ARE NOT EVEN

5174
03:23:56,080 --> 03:23:56,960
EVIDENCE-BASED FOR SOMEONE WHO

5175
03:23:56,960 --> 03:23:59,600
CANNOT RELY ON SPEECH OR MOVE

5176
03:23:59,600 --> 03:24:01,000
THEIR HANDS RELIABLY.

5177
03:24:01,000 --> 03:24:02,880
THEN THIS BECOMES A VICIOUS

5178
03:24:02,880 --> 03:24:05,960
CYCLE AND LEADS TO INCREASED

5179
03:24:05,960 --> 03:24:06,760
SEGREGATION.

5180
03:24:06,760 --> 03:24:07,840
SO IMPORTANT COMMENT.

5181
03:24:07,840 --> 03:24:09,720
THANK YOU, JORDYN.

5182
03:24:09,720 --> 03:24:10,840
>>THANK YOU, JORDYN.

5183
03:24:10,840 --> 03:24:14,120
I THINK NEXT IS DAVID.

5184
03:24:14,120 --> 03:24:16,800
>>SO I ALSO WANT TO
HIGHLIGHT

5185
03:24:16,800 --> 03:24:18,760
STEPHEN'S COMMENT WITH RESPECT

5186
03:24:18,760 --> 03:24:20,680
TO THE IDEA THAT TRULY EVERYONE

5187
03:24:20,680 --> 03:24:21,560
CAN LEARN.

5188
03:24:21,560 --> 03:24:23,040
AND IF THEY ARE NOT LEARNING, I

5189
03:24:23,040 --> 03:24:24,640
THINK IT MAY BE A QUESTION AS

5190
03:24:24,640 --> 03:24:27,320
MUCH OF WHAT WE ARE TRYING TO

5191
03:24:27,320 --> 03:24:28,160
TEACH AS WELL AS HOW WE ARE

5192
03:24:28,160 --> 03:24:29,920
TRYING TO TEACH.

5193
03:24:29,920 --> 03:24:32,480
THE GREAT MAJORITY OF AAC THAT

5194
03:24:32,480 --> 03:24:36,600
IS OUT THERE BEING PROMOTED MAY

5195
03:24:36,600 --> 03:24:38,480
DO AN OKAY JOB OF SUPPORTING

5196
03:24:38,480 --> 03:24:40,600
NEEDS AND WANTS IN SOME

5197
03:24:40,600 --> 03:24:42,760
RESTRICTED SITUATIONS BUT REAL

5198
03:24:42,760 --> 03:24:44,040
DOES HE NOT DO A GOOD JOB OF

5199
03:24:44,040 --> 03:24:45,440
SUPPORTING THE FULL RANGE OF

5200
03:24:45,440 --> 03:24:46,800
COMMUNICATIVE FUNCTIONS THAT

5201
03:24:46,800 --> 03:24:49,040
PEOPLE NEED TO BE FULL

5202
03:24:49,040 --> 03:24:50,480
PARTICIPANTS IN SOCIETY.

5203
03:24:50,480 --> 03:24:52,880
AND I THINK WE CAN SEE THAT THE

5204
03:24:52,880 --> 03:24:55,680
POWER THAT LITERACY HAD FOR MANY

5205
03:24:55,680 --> 03:24:57,160
OF THE PEOPLE ON THE SPECTRUM

5206
03:24:57,160 --> 03:24:58,800
THAT ARE PARTICIPATING IN THE

5207
03:24:58,800 --> 03:24:59,520
CONVERSATION TODAY.

5208
03:24:59,520 --> 03:25:00,680
SO THAT'S NOT TO SAY THAT THAT

5209
03:25:00,680 --> 03:25:02,560
IS THE ONLY APPROACH AND MAY NOT

5210
03:25:02,560 --> 03:25:04,640
BE THE VERY FIRST APPROACH.

5211
03:25:04,640 --> 03:25:06,560
BUT I THINK WE REALLY HAVE TO

5212
03:25:06,560 --> 03:25:07,200
QUESTION THE EXTENT TO WHICHY

5213
03:25:07,200 --> 03:25:08,960
WOO ARE INVESTING TIME AND

5214
03:25:08,960 --> 03:25:10,960
ENERGY IN TRYING TO PROMOTE THE

5215
03:25:10,960 --> 03:25:13,000
USE OF SYSTEMS THAT ULTIMATELY

5216
03:25:13,000 --> 03:25:15,000
ARE NOT GOING TO BE ABLE TO

5217
03:25:15,000 --> 03:25:16,800
SUPPORT THE WIDE RANGE OF

5218
03:25:16,800 --> 03:25:19,440
COMMUNICATION NEEDS THAT

5219
03:25:19,440 --> 03:25:26,560
AUTISTIC INDIVIDUALS WANT.

5220
03:25:26,560 --> 03:25:26,880
>>JANICE.

5221
03:25:26,880 --> 03:25:27,840
>>I COULDN'T AGREE MORE.

5222
03:25:27,840 --> 03:25:30,160
AND I THINK PART OF THAT IS NA

5223
03:25:30,160 --> 03:25:33,360
WE ALSO, WHEN WE ARE SHARING OUR

5224
03:25:33,360 --> 03:25:35,400
RESEARCH WITH OTHERS, NEED TO

5225
03:25:35,400 --> 03:25:37,080
PROVIDE VERY CAREFUL

5226
03:25:37,080 --> 03:25:40,320
DOCUMENTATION OF WHAT THE AAC

5227
03:25:40,320 --> 03:25:41,000
HAS BEEN.

5228
03:25:41,000 --> 03:25:42,760
BECAUSE THERE IS GOOD AAC AND

5229
03:25:42,760 --> 03:25:45,960
THERE IS BAD AAC, JUST LIKE

5230
03:25:45,960 --> 03:25:46,280
OVERING ELSE.

5231
03:25:46,280 --> 03:25:48,200
AND WE NEED TO UNDERSTAND WHAT

5232
03:25:48,200 --> 03:25:50,480
VOCABULARY HAS BEEN PROVIDED.

5233
03:25:50,480 --> 03:25:52,840
HOW IS THAT VOCABULARY BEEN

5234
03:25:52,840 --> 03:25:53,120
REPRESENTED?

5235
03:25:53,120 --> 03:25:54,720
HOW HAS IT BEEN ORGANIZED AND

5236
03:25:54,720 --> 03:25:57,400
LAID OUT WITHIN THE SYSTEM?

5237
03:25:57,400 --> 03:25:58,440
HOW IS THE INDIVIDUAL BEEN

5238
03:25:58,440 --> 03:26:00,080
EXPECTED TO SELECT IT?

5239
03:26:00,080 --> 03:26:01,960
WHAT OUTPUT HAS BEEN PROVIDED?

5240
03:26:01,960 --> 03:26:04,360
IT IS IN AND OF ITSELF AN

5241
03:26:04,360 --> 03:26:05,480
INTERVENTION AND RIGHT NOW, WE

5242
03:26:05,480 --> 03:26:07,760
ARE NOT DOING A GOOD JOB OF

5243
03:26:07,760 --> 03:26:08,360
DOCUMENTING THAT.

5244
03:26:08,360 --> 03:26:10,640
AND AS A RESULT, THERE IS SAY

5245
03:26:10,640 --> 03:26:12,360
BLACK HOLE WE DON'T UNDERSTAND

5246
03:26:12,360 --> 03:26:13,360
WHAT'S HAPPENING.

5247
03:26:13,360 --> 03:26:15,440
SO REALLY JUST AN URGE THAT AS

5248
03:26:15,440 --> 03:26:17,640
PEOPLE ARE DOING INTERVENTION

5249
03:26:17,640 --> 03:26:18,600
THAT IT IS THOUGHTFUL DECISIONS

5250
03:26:18,600 --> 03:26:21,040
ABOUT THE AAC SYSTEMS THAT ARE

5251
03:26:21,040 --> 03:26:21,840
BEING PROVIDED.

5252
03:26:21,840 --> 03:26:23,320
THAT THEY ARE PROVIDING ACCESS

5253
03:26:23,320 --> 03:26:24,520
TO MEANINGFUL VOCABULARY AND

5254
03:26:24,520 --> 03:26:26,440
MEANINGFUL WAYS TO PARTICIPATE.

5255
03:26:26,440 --> 03:26:28,360
AND THAT THAT IS CAREFULLY

5256
03:26:28,360 --> 03:26:30,320
DOCUMENTED IN OUR PAPERS NOT

5257
03:26:30,320 --> 03:26:32,160
JUST WE USE SYSTEM X.

5258
03:26:32,160 --> 03:26:33,240
THAT MEANS NOTHING.

5259
03:26:33,240 --> 03:26:35,280
WE NEED TO KNOW EXACTLY WHAT

5260
03:26:35,280 --> 03:26:36,160
THAT SYSTEM LOOKS LIKE.

5261
03:26:36,160 --> 03:26:37,520
SO THAT IS ONE THING.

5262
03:26:37,520 --> 03:26:38,920
AND THEN A SECOND THING IS, WE

5263
03:26:38,920 --> 03:26:42,800
TALKED A LOT ABOUT HETEROGENEITY

5264
03:26:42,800 --> 03:26:44,520
AND ANOTHER JUST COMMENT TO URGE

5265
03:26:44,520 --> 03:26:46,920
EVERYBODY AS WE ARE PUBLISHING

5266
03:26:46,920 --> 03:26:48,680
STUDIES THAT PROVIDE GROUP

5267
03:26:48,680 --> 03:26:50,680
RESULTS TO PLEASE SHARE THE DATA

5268
03:26:50,680 --> 03:26:52,400
OF THE INDIVIDUAL PARTICIPANTS

5269
03:26:52,400 --> 03:26:54,000
WITHIN THOSE STUDIES.

5270
03:26:54,000 --> 03:26:55,600
WE NEED TO UNDERSTAND BETTER

5271
03:26:55,600 --> 03:26:59,000
WHAT WORKS BEST AND SO OFTEN THE

5272
03:26:59,000 --> 03:27:00,000
GROUP RESULTS MASK INDIVIDUAL

5273
03:27:00,000 --> 03:27:01,680
PATTERNS THAT WE CAN REALLY

5274
03:27:01,680 --> 03:27:02,440
LEARN FROM.

5275
03:27:02,440 --> 03:27:04,560
SO IT'S BEEN INTERESTING TO ME

5276
03:27:04,560 --> 03:27:07,960
AND SOME OF THE MEDICAL

5277
03:27:07,960 --> 03:27:08,480
LITERATURE SPECIFICALLY.

5278
03:27:08,480 --> 03:27:10,080
SOME OF THE DRUG-BASED

5279
03:27:10,080 --> 03:27:12,800
LITERATURE, THEY REALLY FORCE

5280
03:27:12,800 --> 03:27:13,800
LIKE A THREE TIERED LEVEL OF

5281
03:27:13,800 --> 03:27:15,080
ANALYSIS WITH GROUP RESULTS

5282
03:27:15,080 --> 03:27:17,640
WHERE THEY LOOK AT THE GROUP

5283
03:27:17,640 --> 03:27:18,280
PATTERNS BUT BEYOND THAT THEY

5284
03:27:18,280 --> 03:27:19,880
LOOK AT WHAT PERCENTAGE OF

5285
03:27:19,880 --> 03:27:23,320
PEOPLE COMPLY WITH THE GROUP

5286
03:27:23,320 --> 03:27:25,240
PATTERNS IN AND AT AN INDIVIDUAL

5287
03:27:25,240 --> 03:27:26,280
LEVEL, WHAT DOLT UNIQUE CASES

5288
03:27:26,280 --> 03:27:28,360
LOOK LIKE WHERE PEOPLE ARE NOT

5289
03:27:28,360 --> 03:27:29,560
FINDING CERTAIN INTERVENTIONS

5290
03:27:29,560 --> 03:27:31,120
EFFECTIVE OR THEY ARE INDEED

5291
03:27:31,120 --> 03:27:32,880
FINDING OTHER INTERVENTION ITS

5292
03:27:32,880 --> 03:27:33,160
FAITHIVES?

5293
03:27:33,160 --> 03:27:35,360
THAT IS HOW WE ARE ANYTHING TO

5294
03:27:35,360 --> 03:27:36,880
LEARN WHAT WORKS BEST FOR WHOM.

5295
03:27:36,880 --> 03:27:40,600
SO JUST URGING EVERYBODY TO

5296
03:27:40,600 --> 03:27:41,160
SHARE YOUR -- SHARE YOUR

5297
03:27:41,160 --> 03:27:44,080
INDIVIDUAL DATA NOT JUST YOUR

5298
03:27:44,080 --> 03:27:44,400
GROUP RESULTS.

5299
03:27:44,400 --> 03:27:45,840
AND ONE FINAL QUICK COMMENT.

5300
03:27:45,840 --> 03:27:47,400
I THINK IT'S REALLY INTERESTING

5301
03:27:47,400 --> 03:27:49,400
WHEN OUR INTERVENTIONS ARE

5302
03:27:49,400 --> 03:27:49,680
EFFECTIVE.

5303
03:27:49,680 --> 03:27:50,400
IT'S ALWAYS THE INTERVENTION

5304
03:27:50,400 --> 03:27:51,360
THAT IS EFFECTIVE.

5305
03:27:51,360 --> 03:27:53,400
WHEN THEY ARE NOT, IT'S THE

5306
03:27:53,400 --> 03:27:55,080
INDIVIDUAL THAT DIDN'T RESPOND.

5307
03:27:55,080 --> 03:27:58,280
SO AGAIN, IT'S ALWAYS ON THE

5308
03:27:58,280 --> 03:27:59,520
INTERVENTION, ON THE JOB WE DID

5309
03:27:59,520 --> 03:28:01,200
IN TERMS OF DESIGNING THINGS.

5310
03:28:01,200 --> 03:28:03,520
SO THEY ARE EITHER EFFECTIVE OR

5311
03:28:03,520 --> 03:28:05,320
NOT FOR THAT PARTICULAR

5312
03:28:05,320 --> 03:28:06,600
INDIVIDUAL.

5313
03:28:06,600 --> 03:28:07,240
>>ABSOLUTELY, JANICE AND
I'M

5314
03:28:07,240 --> 03:28:10,400
GOING TO INTERJECT AGAIN BECAUSE

5315
03:28:10,400 --> 03:28:12,080
FROM GRANT, JUST -- THIS IS

5316
03:28:12,080 --> 03:28:13,080
MOVING VERY FAST, THIS

5317
03:28:13,080 --> 03:28:14,440
CONVERSATION AND THEY ARE TRYING

5318
03:28:14,440 --> 03:28:15,280
TO GET IN THERE.

5319
03:28:15,280 --> 03:28:17,920
BUT FROM GRANT HE SAYS, I LOVE

5320
03:28:17,920 --> 03:28:18,520
WHAT YOU SAID CAITLYN, SO THIS

5321
03:28:18,520 --> 03:28:20,440
WAS AIFY PEOPLE AGO.

5322
03:28:20,440 --> 03:28:23,520
AND I COMPLETELY AGREE THAT

5323
03:28:23,520 --> 03:28:23,960
SCHOOL COMMUNITIES AND

5324
03:28:23,960 --> 03:28:24,600
COMMUNICATION PARTNERS CAN BE

5325
03:28:24,600 --> 03:28:26,520
TRAINED TO BE INCREDIBLE ALLIES

5326
03:28:26,520 --> 03:28:29,800
TO UPHOLD AAC ETIQUETTE AND THE

5327
03:28:29,800 --> 03:28:31,800
POINT OUT DISCRIMINATION WHEN

5328
03:28:31,800 --> 03:28:32,640
NECESSARY.

5329
03:28:32,640 --> 03:28:35,640
SO THANK YOU, GRANT FOR THAT

5330
03:28:35,640 --> 03:28:35,840
MEANT.

5331
03:28:35,840 --> 03:28:40,720
A FEW BACK.

5332
03:28:40,720 --> 03:28:42,800
>>CHARLOTTE?

5333
03:28:42,800 --> 03:28:44,800
>>IN RESPONSE TO WHAT A
LOT OF

5334
03:28:44,800 --> 03:28:46,480
FOLKS HAVE ALREADY BROUGHT UP UI

5335
03:28:46,480 --> 03:28:49,880
WANTED TO MAKE A PLUG FOR

5336
03:28:49,880 --> 03:28:52,720
DESIGNING RESEARCH THAT HAS SOME

5337
03:28:52,720 --> 03:28:54,880
SORT OF FLEXIBLE SET OF

5338
03:28:54,880 --> 03:28:56,360
ASSESSMENTS FOR PHENOTYPING.

5339
03:28:56,360 --> 03:28:58,360
I KNOW A LOT OF FOLKS ON THIS

5340
03:28:58,360 --> 03:28:59,960
CALL ALREADY DO THAT BECAUSE YOU

5341
03:28:59,960 --> 03:29:01,120
WERE THE ONES THAT TRAINED ME

5342
03:29:01,120 --> 03:29:02,360
AND NOW I DO THAT.

5343
03:29:02,360 --> 03:29:04,400
BUT A COUPLE OF PEOPLE HAVE

5344
03:29:04,400 --> 03:29:06,800
BROUGHT UP THE ISSUE HOW TO

5345
03:29:06,800 --> 03:29:09,600
CHARACTERIZE HETEROGENOUS

5346
03:29:09,600 --> 03:29:09,880
POPULATIONS?

5347
03:29:09,880 --> 03:29:11,280
AND I THINK THE ANSWER IS THAT

5348
03:29:11,280 --> 03:29:12,840
WE CAN'T JUST CHOOSE ONE MEASURE

5349
03:29:12,840 --> 03:29:14,600
AND SAY, THIS IS THE MEASURE WE

5350
03:29:14,600 --> 03:29:15,840
ARE GOING TO USE.

5351
03:29:15,840 --> 03:29:17,480
SOME KIDS ARE GOING TO FLOOR OUT

5352
03:29:17,480 --> 03:29:20,000
AND SOME WILL CEALING OUT AND SO

5353
03:29:20,000 --> 03:29:20,640
BE IT.

5354
03:29:20,640 --> 03:29:22,680
I THINK WE AS THE RESEARCHERS

5355
03:29:22,680 --> 03:29:24,920
HAVE TO PUSH BACK AND ADVOCATE A

5356
03:29:24,920 --> 03:29:28,000
LITTLE BIT FOR -- MAY MAKE THE

5357
03:29:28,000 --> 03:29:28,640
STATISTICIANS CRINGE AT THE END

5358
03:29:28,640 --> 03:29:30,840
OF THE DAY, BUT WE NEED TO GET

5359
03:29:30,840 --> 03:29:32,680
MEANINGFUL NUMBERS FROM OUR

5360
03:29:32,680 --> 03:29:33,000
PARTICIPANTS.

5361
03:29:33,000 --> 03:29:35,280
AND JORDYN AND GRANT HAVE MADE

5362
03:29:35,280 --> 03:29:37,120
EXCELLENT POINTS ABOUT THE FACT

5363
03:29:37,120 --> 03:29:38,120
THAT COGNITIVE ASSESSMENTS ARE

5364
03:29:38,120 --> 03:29:40,960
NOT EVEN VALID IN A LOT OF THESE

5365
03:29:40,960 --> 03:29:41,240
POPULATIONS.

5366
03:29:41,240 --> 03:29:43,320
I WOULD RATHER HAVE NUMBERS FROM

5367
03:29:43,320 --> 03:29:45,240
A FEW DIFFERENT ASSESSMENTS THAT

5368
03:29:45,240 --> 03:29:46,960
I HAVE REASON TO BELIEVE ARE

5369
03:29:46,960 --> 03:29:48,840
GETTING AT THE SAME CONSTRUCT

5370
03:29:48,840 --> 03:29:50,440
THAT ARE GIVING ME VALID

5371
03:29:50,440 --> 03:29:52,320
INFORMATION ABOUT EACH ONE OF

5372
03:29:52,320 --> 03:29:54,400
THOSE INDIVIDUALS, THAN HAVE

5373
03:29:54,400 --> 03:29:55,360
NUMBERS ALL FROM THE SAME

5374
03:29:55,360 --> 03:29:56,680
ASSESSMENT WHERE I THINK ONLY

5375
03:29:56,680 --> 03:29:58,520
HALF THE NUMBERS ARE ACTUALLY

5376
03:29:58,520 --> 03:29:58,920
VALID.

5377
03:29:58,920 --> 03:30:00,320
SO FOR PEOPLE WHO ARE SORT OF

5378
03:30:00,320 --> 03:30:02,280
THINKING ABOUT THESE ISSUES OR

5379
03:30:02,280 --> 03:30:03,640
STARTING OUT, I WOULD ENCOURAGE

5380
03:30:03,640 --> 03:30:06,160
FOLKS TO THINK ABOUT A

5381
03:30:06,160 --> 03:30:08,200
STRUCTURED BUT FLEXIBLE SET OF

5382
03:30:08,200 --> 03:30:09,760
ASSESSMENTS TO TRY TO MEET THE

5383
03:30:09,760 --> 03:30:10,960
NEEDS OF THE DIFFERENT

5384
03:30:10,960 --> 03:30:13,000
INDIVIDUALS THAT WE'RE

5385
03:30:13,000 --> 03:30:13,440
ASSESSING.

5386
03:30:13,440 --> 03:30:19,200
>>THANK YOU, CHARLOTTE.

5387
03:30:19,200 --> 03:30:19,440
VICK RAM.

5388
03:30:19,440 --> 03:30:19,840
>>THANK YOU.

5389
03:30:19,840 --> 03:30:23,040
I WANT TO MAKE TWO POINTS.

5390
03:30:23,040 --> 03:30:25,040
I'M A SCIENTIST AND I HEARD A

5391
03:30:25,040 --> 03:30:25,680
LOT ABOUT INTERVENTIONS AND

5392
03:30:25,680 --> 03:30:27,480
HEARD A LOT ABOUT APPROACHES AND

5393
03:30:27,480 --> 03:30:30,840
I HEARD A LOT ABOUT EXPERIMENTS.

5394
03:30:30,840 --> 03:30:32,840
BUT I ALSO HAD A LOT OF TIME TO

5395
03:30:32,840 --> 03:30:35,640
SPEND WITH JORDYN AND GRANT AND

5396
03:30:35,640 --> 03:30:37,680
OTHER DISABLED FOLKS.

5397
03:30:37,680 --> 03:30:39,960
AND ONE OF THE THINGS THAT IS SO

5398
03:30:39,960 --> 03:30:45,880
CLEAR FROM MY EXPERIENCES WITH

5399
03:30:45,880 --> 03:30:48,720
THEM IS THAT THEY FEEL

5400
03:30:48,720 --> 03:30:52,240
UNDERSTANDABLY, THAT THE

5401
03:30:52,240 --> 03:30:52,840
DAY-TO-DAY EXPERIENCES AND

5402
03:30:52,840 --> 03:30:54,240
CHALLENGES AND OPPORTUNITIES

5403
03:30:54,240 --> 03:30:58,280
THAT THEY FACE ARE NOT BEING

5404
03:30:58,280 --> 03:31:00,080
CAPTURED BY MUCH OF THE RESEARCH

5405
03:31:00,080 --> 03:31:01,680
AND THE INTERVENTION AND THE

5406
03:31:01,680 --> 03:31:02,480
EXPERIMENTS THAT ARE BEING DONE.

5407
03:31:02,480 --> 03:31:04,880
AND I WANT TO GIVE YOU A

5408
03:31:04,880 --> 03:31:06,560
SPECIFIC EXAMPLE.

5409
03:31:06,560 --> 03:31:09,280
SO, I WAS REALLY MOVED YESTERDAY

5410
03:31:09,280 --> 03:31:10,880
BY DENISE LOMBARDI'S DESCRIPTION

5411
03:31:10,880 --> 03:31:14,560
IN THE VIDEO THAT SHE SHOWED OF

5412
03:31:14,560 --> 03:31:16,720
RJ SPELLING OUT BREAD AND THEN

5413
03:31:16,720 --> 03:31:18,800
GOING TO FIND THE NUMBER 6 IN

5414
03:31:18,800 --> 03:31:21,240
ORDER TO MAKE A REQUEST FOR

5415
03:31:21,240 --> 03:31:21,920
BREAD STICKS.

5416
03:31:21,920 --> 03:31:22,560
AND THAT'S NOT SOMETHING THAT

5417
03:31:22,560 --> 03:31:25,000
WOULD BE CAPTURED IN A LAB.

5418
03:31:25,000 --> 03:31:27,520
THAT'S NOT SOMETHING THAT TO

5419
03:31:27,520 --> 03:31:31,280
SOMEBODY'S POINT EARLIER AN

5420
03:31:31,280 --> 03:31:32,720
ANECDOTE MIGHT NOT BE BELIEVED,

5421
03:31:32,720 --> 03:31:34,760
IT MIGHT BE DISMISSED.

5422
03:31:34,760 --> 03:31:37,160
BUT IMAGINE HOW MUCH THAT TELLS

5423
03:31:37,160 --> 03:31:40,680
YOU ABOUT THE CREATIVITY AND THE

5424
03:31:40,680 --> 03:31:41,520
PROBLEM-SOLVING AND THE

5425
03:31:41,520 --> 03:31:44,640
COGNITION THAT RJ WAS

5426
03:31:44,640 --> 03:31:46,160
DEMONSTRATING IN THAT MOMENT!

5427
03:31:46,160 --> 03:31:47,880
SO WHAT A WONDERFUL WAY TO

5428
03:31:47,880 --> 03:31:50,360
LEVERAGE THAT KIND OF

5429
03:31:50,360 --> 03:31:52,200
EXPERIENCE, THAT KIND OF EPISODE

5430
03:31:52,200 --> 03:31:53,880
TO HELP RJ BUT ALSO THINK ABOUT

5431
03:31:53,880 --> 03:31:56,800
THE AMAZING OPPORTUNITIES.

5432
03:31:56,800 --> 03:31:58,400
IT WOULD BE TO LEVERAGE TO

5433
03:31:58,400 --> 03:32:00,400
DEVELOP A LINE OF RESEARCH ABOUT

5434
03:32:00,400 --> 03:32:02,160
PROBLEM-SOLVING AND CREATIVITY

5435
03:32:02,160 --> 03:32:04,400
IN THESE SITUATIONS THAT

5436
03:32:04,400 --> 03:32:06,160
NON-SPEAKING AND MINIMALLY

5437
03:32:06,160 --> 03:32:07,280
VERBAL PEOPLE FIND THEMSELVES IN

5438
03:32:07,280 --> 03:32:10,080
ALL THE TIME.

5439
03:32:10,080 --> 03:32:11,560
SO, I'VE HEARD THIS PLEA OVER

5440
03:32:11,560 --> 03:32:12,800
AND OVER AGAIN FROM THE FOLKS I

5441
03:32:12,800 --> 03:32:14,920
GOET TO SPEND TIME WITH, LIKE I

5442
03:32:14,920 --> 03:32:17,120
WISH THAT RESEARCHERS WOULD GET

5443
03:32:17,120 --> 03:32:18,000
OUT OF THE LAB.

5444
03:32:18,000 --> 03:32:20,160
COME SPEND A DAY WITH ME OR TWO

5445
03:32:20,160 --> 03:32:22,200
DAYS WITH ME OR A WEEK WITH ME

5446
03:32:22,200 --> 03:32:23,440
THROUGH ALL THE SETTINGS THAT

5447
03:32:23,440 --> 03:32:24,600
I'M IN.

5448
03:32:24,600 --> 03:32:26,680
AND THAT IS GOING TO BE

5449
03:32:26,680 --> 03:32:27,480
BENEFICIAL ON SO MANY WAYS.

5450
03:32:27,480 --> 03:32:29,960
AND I GUESS THE SECOND POINT

5451
03:32:29,960 --> 03:32:34,200
I'LL MAKE, I OFTEN BEEN THE

5452
03:32:34,200 --> 03:32:36,640
PHILOSOPHER WHO HAS A

5453
03:32:36,640 --> 03:32:37,480
COGNITIVELY DISABLED DAUGHTER

5454
03:32:37,480 --> 03:32:39,440
AND IN VARIOUS EXCHANGES SHE WAS

5455
03:32:39,440 --> 03:32:41,760
FORCED TO HAVE WITH PETER

5456
03:32:41,760 --> 03:32:44,520
SINGER, SHE ARTICULATED 4

5457
03:32:44,520 --> 03:32:48,360
PRINCIPLES OF WHAT SHE CALLS EP

5458
03:32:48,360 --> 03:32:48,760
SETTIC PRINCIPLES.

5459
03:32:48,760 --> 03:32:49,720
THE ONE I WILL FOCUS ON HERE IS

5460
03:32:49,720 --> 03:32:53,680
SHE CALLS IT EPISTEMIC MODESTY.

5461
03:32:53,680 --> 03:32:55,480
AND IT'S KNOWING WHAT YOU DON'T

5462
03:32:55,480 --> 03:32:55,760
KNOW.

5463
03:32:55,760 --> 03:32:57,960
AND SO WHEN IT COMES TO THINKING

5464
03:32:57,960 --> 03:33:00,400
ABOUT SOMEBODY'S POTENTIAL OR

5465
03:33:00,400 --> 03:33:02,960
SOMEBODY'S COGNITIVE ABILITY, WE

5466
03:33:02,960 --> 03:33:06,040
DON'T HAVE DIRECT ACCESS TO THAT

5467
03:33:06,040 --> 03:33:08,400
KIND OF INFORMATION ABOUT

5468
03:33:08,400 --> 03:33:08,640
ANYBODY.

5469
03:33:08,640 --> 03:33:10,280
AND THE PEOPLE WHO I'VE HAD THE

5470
03:33:10,280 --> 03:33:11,640
OPPORTUNITY TO SPEND WITH, A

5471
03:33:11,640 --> 03:33:13,560
TIME WITH AND THEIR FAMILIES S

5472
03:33:13,560 --> 03:33:16,600
AND MYSELF, I'M SURPRISED ALL

5473
03:33:16,600 --> 03:33:17,800
THE TIME ABOUT WHAT SOMEBODY

5474
03:33:17,800 --> 03:33:19,280
KNOWS AND CAN DO.

5475
03:33:19,280 --> 03:33:21,720
AND THOSE PIECES, THOSE LITTLE

5476
03:33:21,720 --> 03:33:23,720
GLIMPSES ARE NOT GOING TO BE

5477
03:33:23,720 --> 03:33:25,640
OBVIOUS BY STAYING IN THE LAB.

5478
03:33:25,640 --> 03:33:27,440
JUST TO REPEAT FROM EARLIER.

5479
03:33:27,440 --> 03:33:29,840
I THINK WE HAVE TO ALSO REMEMBER

5480
03:33:29,840 --> 03:33:31,280
THAT THERE ARE REAL PEOPLE

5481
03:33:31,280 --> 03:33:34,800
BEHIND ALL OF THIS RESEARCH.

5482
03:33:34,800 --> 03:33:37,000
THANK YOU.

5483
03:33:37,000 --> 03:33:39,640
>>THANK YOU.

5484
03:33:39,640 --> 03:33:40,720
ZACK.

5485
03:33:40,720 --> 03:33:41,240
>>OKAY.

5486
03:33:41,240 --> 03:33:42,960
SO, I'M TRYING TO MAKE A COUPLE

5487
03:33:42,960 --> 03:33:44,480
DIFFERENT POINTS HERE.

5488
03:33:44,480 --> 03:33:47,480
SO FIRST THING, THINKING JUST

5489
03:33:47,480 --> 03:33:48,960
ABOUT THE OVERALL TOPIC ABOUT

5490
03:33:48,960 --> 03:33:54,760
HOW DO WE GET BETTER MEASURES

5491
03:33:54,760 --> 03:33:56,040
FOR PSYCHOMETRICS AND OVERALL

5492
03:33:56,040 --> 03:33:56,400
BETTER OUTCOMES?

5493
03:33:56,400 --> 03:33:58,440
SO I DO ACTUALLY AGREE WITH

5494
03:33:58,440 --> 03:33:58,640
LARRY.

5495
03:33:58,640 --> 03:34:01,640
YOU DON'T REALLY WANT TO DO TEST

5496
03:34:01,640 --> 03:34:02,360
RETEST OVER PLACEBO.

5497
03:34:02,360 --> 03:34:04,960
THERE IS A LOT OF PROBLEMS WITH

5498
03:34:04,960 --> 03:34:06,040
THAT.

5499
03:34:06,040 --> 03:34:07,800
SO, BECAUSE AGAIN THERE IS LIKE

5500
03:34:07,800 --> 03:34:09,680
A MAJOR ISSUE WHICH IS LIKE YOU

5501
03:34:09,680 --> 03:34:10,720
ESSENTIALLY GAVE PEOPLE AN

5502
03:34:10,720 --> 03:34:12,760
INTERVENTION OVER THE PLACEBO

5503
03:34:12,760 --> 03:34:13,440
RUN IN.

5504
03:34:13,440 --> 03:34:15,240
PLACEBOS ARE AN INTERVENTION.

5505
03:34:15,240 --> 03:34:18,080
BUT THERE ARE OTHER OPTIONS.

5506
03:34:18,080 --> 03:34:19,400
NAMELY THAT YOU CAN ACTUALLY

5507
03:34:19,400 --> 03:34:21,000
COLLECT DATA NATURALISTICALLY.

5508
03:34:21,000 --> 03:34:22,440
SOMEONE ELSE EARLIER WAS

5509
03:34:22,440 --> 03:34:24,280
MENTIONING WE SHOULD DO MORE

5510
03:34:24,280 --> 03:34:25,440
NATURALISTIC DATA COLLECTION.

5511
03:34:25,440 --> 03:34:27,640
NATURAL HISTORY STUDIES ARE VERY

5512
03:34:27,640 --> 03:34:28,080
IMPORTANT.

5513
03:34:28,080 --> 03:34:29,800
AND I THINK ONE REAL AREA THAT I

5514
03:34:29,800 --> 03:34:32,320
THINK A LOT OF PEOPLE HAVE

5515
03:34:32,320 --> 03:34:34,280
NEGLECTED IS JUST THE DATA

5516
03:34:34,280 --> 03:34:36,240
COLLECTION IN EVERY DAY CLINICAL

5517
03:34:36,240 --> 03:34:36,720
PRACTICE.

5518
03:34:36,720 --> 03:34:37,960
ALL OF THESE PARTICIPANTS THAT

5519
03:34:37,960 --> 03:34:39,640
PEOPLE ARE THINKING OF RUNNING

5520
03:34:39,640 --> 03:34:42,240
THROUGH THE CLINICAL TRIALS SEE

5521
03:34:42,240 --> 03:34:43,120
CLINICAL PROFESSIONALS ANYWAY.

5522
03:34:43,120 --> 03:34:45,000
THEY SEE A LOT OF SERVICE

5523
03:34:45,000 --> 03:34:46,000
PROVIDERS OFTENTIMES BECAUSE

5524
03:34:46,000 --> 03:34:47,720
THIS IS A POPULATION THAT NEEDS

5525
03:34:47,720 --> 03:34:50,280
A LOT OF SERVICES AND OFTENTIMES

5526
03:34:50,280 --> 03:34:52,120
THESE PEOPLE ARE ADMINISTERING A

5527
03:34:52,120 --> 03:34:53,840
BUNCH OF STANDARDIZED MEASURES

5528
03:34:53,840 --> 03:34:54,080
ANYWAY.

5529
03:34:54,080 --> 03:34:55,680
IN THIS CASE, AS WE JUST

5530
03:34:55,680 --> 03:34:57,440
LEVERAGED THESE DATA, THAT

5531
03:34:57,440 --> 03:34:58,760
PEOPLE ARE ALREADY COLLECTING,

5532
03:34:58,760 --> 03:35:00,680
PUT THEM IN BIG 'OLE DATABASES

5533
03:35:00,680 --> 03:35:01,480
AND PUT THEM TOGETHER.

5534
03:35:01,480 --> 03:35:04,520
THERE NEEDS TO BE IRBs BEHIND

5535
03:35:04,520 --> 03:35:05,440
THESE THINGS AND STANDARDIZED

5536
03:35:05,440 --> 03:35:06,960
PROTOCOLS TO SOME EXTENT AND

5537
03:35:06,960 --> 03:35:08,640
WAYS OF POOLING THE DATA.

5538
03:35:08,640 --> 03:35:10,480
AND AGAIN, I THINK HAVING JUST

5539
03:35:10,480 --> 03:35:12,120
BIG STANDARDIZED INFRASTRUCTURE

5540
03:35:12,120 --> 03:35:14,200
TO DO THAT FACILITATING WOULD BE

5541
03:35:14,200 --> 03:35:17,800
REALLY, REALLY VALUABLE.

5542
03:35:17,800 --> 03:35:20,320
AND AGAIN, SAY HERE SAY GREAT

5543
03:35:20,320 --> 03:35:22,240
PROTOCOL FOR DOING ASSESSMENTS

5544
03:35:22,240 --> 03:35:23,440
IF YOU COULD FIT THIS IN WHEN

5545
03:35:23,440 --> 03:35:25,960
YOU SEE THESE KIND OF PATIENTS.

5546
03:35:25,960 --> 03:35:28,160
CLINICIANS DO THIS.

5547
03:35:28,160 --> 03:35:31,760
AND JOIN OUR STEP AND THEN HAVE

5548
03:35:31,760 --> 03:35:32,840
MANY AUTISTIC PEOPLE JOIN OUR

5549
03:35:32,840 --> 03:35:34,520
GROUP AND FOLLOW THEM AS LONG AS

5550
03:35:34,520 --> 03:35:34,720
YOU CAN.

5551
03:35:34,720 --> 03:35:36,800
AND THEN WE HAVE PSYCHOMELTRIX

5552
03:35:36,800 --> 03:35:38,520
FOR ALL OF THESE STANDARDIZED

5553
03:35:38,520 --> 03:35:39,680
THINGS.

5554
03:35:39,680 --> 03:35:39,960
ET CETERA.

5555
03:35:39,960 --> 03:35:41,440
ANOTHER THING IN TERMS OF

5556
03:35:41,440 --> 03:35:43,360
FLEXIBLE PHENOTYPING, WE COULD

5557
03:35:43,360 --> 03:35:45,640
POTENTIALLY DO WORK TO ACTUALLY

5558
03:35:45,640 --> 03:35:47,000
EQUATE ASSESSMENTS.

5559
03:35:47,000 --> 03:35:49,000
IF WE THINK THINGS ARE MEASURING

5560
03:35:49,000 --> 03:35:50,120
THE SAME CONSTRUCT.

5561
03:35:50,120 --> 03:35:51,440
THERE ARE PLENTY OF TECHNIQUES

5562
03:35:51,440 --> 03:35:54,600
THAT COULD ACTUALLY TEST THOSE

5563
03:35:54,600 --> 03:35:55,440
SORTS OF HYPOTHESES.

5564
03:35:55,440 --> 03:35:58,480
NOW GRANTED LIKE USUAL I NEED

5565
03:35:58,480 --> 03:35:59,880
NUTRITION ON YOUR TEAM TO RUN

5566
03:35:59,880 --> 03:36:00,760
THOSE KINDS OF ANALYSIS.

5567
03:36:00,760 --> 03:36:02,760
BUT THIS IS NOT SOMETHING THAT

5568
03:36:02,760 --> 03:36:07,040
IS BEYOND THE SCOPE OF A R21 TO

5569
03:36:07,040 --> 03:36:10,080
ACTUALLY TASK, ESPECIALLY IF YOU

5570
03:36:10,080 --> 03:36:11,680
HAVE DATA WITH CLINICAL TRIAL

5571
03:36:11,680 --> 03:36:12,600
LEVEL SAMPLES.

5572
03:36:12,600 --> 03:36:14,040
AND SOY, IF WE HAVE THOSE KINDS

5573
03:36:14,040 --> 03:36:16,560
OF DATA, IT IS VERY HIGHLY

5574
03:36:16,560 --> 03:36:18,800
LIKELY THAT WE WOULD BE ABLE TO

5575
03:36:18,800 --> 03:36:22,000
DO THAT KIND OF WORK AND THEN

5576
03:36:22,000 --> 03:36:23,520
FROM THE KIND OF DATA WE HAVE

5577
03:36:23,520 --> 03:36:25,680
ALREADY COLLECTED, ESSENTIALLY

5578
03:36:25,680 --> 03:36:27,680
AGAIN IN A PHASE III TRIAL, RUN

5579
03:36:27,680 --> 03:36:29,760
FROM THAT AND SAY, OKAY, NOW WE

5580
03:36:29,760 --> 03:36:31,680
SAY OKAY WE HAVE THIS REALLY

5581
03:36:31,680 --> 03:36:33,320
HETEROGENOUS POPULATION BUT WE

5582
03:36:33,320 --> 03:36:38,080
ARE OKAY MERGING THE -- I WOULD

5583
03:36:38,080 --> 03:36:40,480
SAY THE RECEPTIVE ONE WORD

5584
03:36:40,480 --> 03:36:42,560
PICTURE VOCABULARY TEST IN THIS

5585
03:36:42,560 --> 03:36:45,680
GROUP AND THE BODY IN THIS GROUP

5586
03:36:45,680 --> 03:36:46,680
AND SOME OTHER LANGUAGE TEST IN

5587
03:36:46,680 --> 03:36:47,360
THIS GROUP.

5588
03:36:47,360 --> 03:36:48,360
AND THAT IS OKAY.

5589
03:36:48,360 --> 03:36:50,080
BECAUSE WE WERE ABLE TO EQUATE

5590
03:36:50,080 --> 03:36:55,920
THEM AND -- DISCERN WILL AND

5591
03:36:55,920 --> 03:36:57,560
THEN THE LAST THING IS TO

5592
03:36:57,560 --> 03:36:57,960
VICKRA'S POINTED.

5593
03:36:57,960 --> 03:36:59,640
THERE ARE WAYS TO MEASURE SOME

5594
03:36:59,640 --> 03:37:06,120
OF THESE SORT OF VIBIETS THAT

5595
03:37:06,120 --> 03:37:07,080
FAMILIES CAN TELL YOU IN THE

5596
03:37:07,080 --> 03:37:07,680
CLINICAL ENVIRONMENT.

5597
03:37:07,680 --> 03:37:10,680
AND THAT IS THROUGH THE

5598
03:37:10,680 --> 03:37:11,680
CLINICIAN INTERVIEW.

5599
03:37:11,680 --> 03:37:14,200
LOTS OF TIMES IN JUST STANDARD

5600
03:37:14,200 --> 03:37:18,520
CLINICAL PRACTICE, HOW DO YOU

5601
03:37:18,520 --> 03:37:20,160
FIGURE OUT WHETHER THE PATIENT

5602
03:37:20,160 --> 03:37:20,520
GETTING BETTER?

5603
03:37:20,520 --> 03:37:20,840
YOU ASK THEM.

5604
03:37:20,840 --> 03:37:22,560
YOU ASK THE FAMILY.

5605
03:37:22,560 --> 03:37:24,160
AND YOU JUST SAY HOW ARE YOU

5606
03:37:24,160 --> 03:37:24,360
DOING?

5607
03:37:24,360 --> 03:37:25,920
THERE IS A LOT OF QUALITATIVE

5608
03:37:25,920 --> 03:37:27,080
INFORMATION THAT GOES INTO A

5609
03:37:27,080 --> 03:37:29,000
STANDARD CLINICAL ASSESSMENT.

5610
03:37:29,000 --> 03:37:32,800
AND OBVIOUSLY, THIS ISN'T

5611
03:37:32,800 --> 03:37:33,800
TYPICALLY DONE IN A CLINICAL

5612
03:37:33,800 --> 03:37:34,440
TRIAL.

5613
03:37:34,440 --> 03:37:36,040
WE TRY TO BE OBJECTIVE AND TRY

5614
03:37:36,040 --> 03:37:38,520
TO GET THINGS AND STRUCTURE THEM

5615
03:37:38,520 --> 03:37:40,080
AND PUT THEM INTO MEASURES THAT

5616
03:37:40,080 --> 03:37:42,240
CAN BE COMPARED BETWEEN PEOPLE.

5617
03:37:42,240 --> 03:37:44,120
HOWEVER, NEVERTHELESS, WE CAN

5618
03:37:44,120 --> 03:37:47,040
ALWAYS DO THIS IN SOME SORT OF

5619
03:37:47,040 --> 03:37:47,720
MORE STRUCTURED WAY.

5620
03:37:47,720 --> 03:37:49,520
IF WE ASK THE RIGHT QUESTIONS,

5621
03:37:49,520 --> 03:37:51,440
WE CAN PULL OUT THIS KIND OF

5622
03:37:51,440 --> 03:37:52,760
INFORMATION, FILTER IT THROUGH

5623
03:37:52,760 --> 03:37:53,920
CLINICAL JUDGMENT AND STILL GET

5624
03:37:53,920 --> 03:37:55,760
THEM TO TELL US THE VIGNETTES

5625
03:37:55,760 --> 03:37:57,560
THAT WILL GIVE US THIS KIND OF

5626
03:37:57,560 --> 03:37:58,840
INFORMATION, WHICH WE THEN

5627
03:37:58,840 --> 03:38:01,120
SCORE, RATE, ET CETERA, AND PUT

5628
03:38:01,120 --> 03:38:02,720
INTO OUR OUTCOME MEASURES.

5629
03:38:02,720 --> 03:38:04,400
AND I THINK HAVING MORE

5630
03:38:04,400 --> 03:38:06,960
CLINICIAN RATED INTERVIEW-TYPE

5631
03:38:06,960 --> 03:38:09,480
INSTRUMENTS COULD BE VERY

5632
03:38:09,480 --> 03:38:09,840
VALUABLE.

5633
03:38:09,840 --> 03:38:10,520
BECAUSE THEY COULD TELL US THIS

5634
03:38:10,520 --> 03:38:10,840
INFORMATION.

5635
03:38:10,840 --> 03:38:12,120
WE HAVE TO LEARN TO ASK THE

5636
03:38:12,120 --> 03:38:13,040
RIGHT QUESTIONS.

5637
03:38:13,040 --> 03:38:14,440
HOW DO WE DO THAT?

5638
03:38:14,440 --> 03:38:16,280
WE ASK THE STAKEHOLDERSES WHAT

5639
03:38:16,280 --> 03:38:17,400
THOSE QUESTIONS ARE.

5640
03:38:17,400 --> 03:38:19,120
>>THANK YOU, ZACK.

5641
03:38:19,120 --> 03:38:20,920
MARY ANN?

5642
03:38:20,920 --> 03:38:25,800
>>I ORIGINALLY WAS COMING
ON TO

5643
03:38:25,800 --> 03:38:28,200
TALK ABOUT STEPHEN'S COMMENTS

5644
03:38:28,200 --> 03:38:29,040
ABOUT INTELLECTUAL DISABILITY

5645
03:38:29,040 --> 03:38:30,240
BUT I WANT TO ADD SOMETHING

5646
03:38:30,240 --> 03:38:33,600
ABOUT JORDYN'S COMMENTS AS WELL.

5647
03:38:33,600 --> 03:38:36,440
I CERTAINLY AGREE WITH WHAT

5648
03:38:36,440 --> 03:38:38,880
STEPHEN SAID ABOUT INTELLECTUAL

5649
03:38:38,880 --> 03:38:40,520
DISABILITY AND WHEN WE FOCUS ON

5650
03:38:40,520 --> 03:38:42,800
WHAT THE PERSON CAN DO OR HAS

5651
03:38:42,800 --> 03:38:45,720
THE POTENTIAL TO DO, WE OFTEN

5652
03:38:45,720 --> 03:38:48,200
COME AWAY WITH MUCH BETTER

5653
03:38:48,200 --> 03:38:50,680
OUTCOMES FOR THEM.

5654
03:38:50,680 --> 03:38:53,000
AND I WANT TO RESPOND TO WHAT

5655
03:38:53,000 --> 03:38:54,800
JORDYN SAID BECAUSE I THINK IT

5656
03:38:54,800 --> 03:38:58,600
IS SO CRITICAL ABOUT TESTING AND

5657
03:38:58,600 --> 03:38:59,680
IQ TESTS.

5658
03:38:59,680 --> 03:39:01,280
IQ TESTS OFTEN ARE BASED ON

5659
03:39:01,280 --> 03:39:03,440
LANGUAGE SKILLS AND VERBAL

5660
03:39:03,440 --> 03:39:04,200
SKILLS THAT SOMEBODY BRINGS WHEN

5661
03:39:04,200 --> 03:39:08,640
YOU ARE LOOKING AT FOLKS VERBAL

5662
03:39:08,640 --> 03:39:09,200
IQ.

5663
03:39:09,200 --> 03:39:11,120
AND INDIVIDUALS WHO ARE GOING TO

5664
03:39:11,120 --> 03:39:15,040
BE USING AAC DON'T BRING THOSE

5665
03:39:15,040 --> 03:39:16,640
SKILLS OR THEIR SKILLS CAN'T BE

5666
03:39:16,640 --> 03:39:18,280
TESTED IN A TRADITIONAL WAY.

5667
03:39:18,280 --> 03:39:22,120
SO THEY ARE PUT AT A

5668
03:39:22,120 --> 03:39:23,560
DISADVANTAGE FROM THE ABSOLUTE

5669
03:39:23,560 --> 03:39:27,440
BEGINNING WHEN THEY ARE BEING

5670
03:39:27,440 --> 03:39:29,960
SEEN AND INTEGRATED INTO SOME

5671
03:39:29,960 --> 03:39:34,560
TYPE OF INTERVENTION.

5672
03:39:34,560 --> 03:39:36,360
I WANT TOW ADD TO THE COMMENTS

5673
03:39:36,360 --> 03:39:37,560
THAT STEPHEN MADE ABOUT HOW WE

5674
03:39:37,560 --> 03:39:41,480
VIEW PEOPLE WITH INTELLECTUAL

5675
03:39:41,480 --> 03:39:42,360
DISABILITIES BECAUSE I THINK --

5676
03:39:42,360 --> 03:39:43,840
THIS IS ALSO TRUE FOR PEOPLE WHO

5677
03:39:43,840 --> 03:39:47,600
USE AAC.

5678
03:39:47,600 --> 03:39:48,240
THAT THERE ARE REAL MYTHS THAT

5679
03:39:48,240 --> 03:39:50,480
ARE OUT THERE THAT HAVE EVOLVED

5680
03:39:50,480 --> 03:39:52,280
OVER TIME ABOUT WHAT A PERSON

5681
03:39:52,280 --> 03:39:54,760
CAN DO OR WHAT AN INTERVENTION

5682
03:39:54,760 --> 03:39:56,560
WILL OR WILL NOT DO.

5683
03:39:56,560 --> 03:39:58,960
FOR EXAMPLE, AAC WILL HINDER THE

5684
03:39:58,960 --> 03:40:00,360
DEVELOPMENT OF SPEECH.

5685
03:40:00,360 --> 03:40:03,560
AND THESE ARE ALL OFTEN MYTHS

5686
03:40:03,560 --> 03:40:04,200
THAT ARE BELIEFS AND ATTITUDES

5687
03:40:04,200 --> 03:40:06,120
THAT ARE DEVELOPED AND THEY

5688
03:40:06,120 --> 03:40:08,400
AFFECT HOW WELL WE CAN INTERVENE

5689
03:40:08,400 --> 03:40:13,040
AND HOW WELL WE CAN ADVANCE

5690
03:40:13,040 --> 03:40:14,640
COMMUNICATION FOR INDIVIDUALS.

5691
03:40:14,640 --> 03:40:16,760
SO I THINK THAT YESTERDAY THE

5692
03:40:16,760 --> 03:40:17,960
ATTITUDES AND BELIEFS WERE

5693
03:40:17,960 --> 03:40:21,040
TALKED ABOUT A LITTLE BIT AND I

5694
03:40:21,040 --> 03:40:22,240
THINK THAT IT ENDS UP BEING A

5695
03:40:22,240 --> 03:40:25,440
VERY IMPORTANT PIECE OF THINGS

5696
03:40:25,440 --> 03:40:28,080
BECAUSE IF PEOPLE COME BOTH

5697
03:40:28,080 --> 03:40:31,480
FAMILIES, CLINICIANS,

5698
03:40:31,480 --> 03:40:33,520
PHYSICIANS, THEY COME WITH THESE

5699
03:40:33,520 --> 03:40:35,000
ATTITUDES AND BELIEFS.

5700
03:40:35,000 --> 03:40:36,440
CHANGING THOSE ATTITUDES AND

5701
03:40:36,440 --> 03:40:37,960
BELIEFS CAN BE VERY CHALLENGING

5702
03:40:37,960 --> 03:40:38,960
TASK FOR US.

5703
03:40:38,960 --> 03:40:42,800
BUT THEY ALSO AFFECT HOW

5704
03:40:42,800 --> 03:40:45,160
SUCCESSFUL AN INTERVENTION CAN

5705
03:40:45,160 --> 03:40:46,560
BE OR NOT.

5706
03:40:46,560 --> 03:40:46,880
SO THANK YOU.

5707
03:40:46,880 --> 03:40:49,520
AND JORDYN, THANK YOU VERY MUCH

5708
03:40:49,520 --> 03:40:50,760
FOR THOSE COMMENTS.

5709
03:40:50,760 --> 03:40:52,040
>>THANK YOU, MARY ANN.

5710
03:40:52,040 --> 03:40:53,400
WE HAVE FOUR MORE PEOPLE WITH

5711
03:40:53,400 --> 03:40:56,440
HANDS UP AND WE HAVE -- WE ARE

5712
03:40:56,440 --> 03:40:58,280
GETTING CLOSE TO BEING DONE.

5713
03:40:58,280 --> 03:40:59,560
AND I DON'T KNOW IF THEY ARE

5714
03:40:59,560 --> 03:41:02,240
PRESSING QUESTIONS FROM THE

5715
03:41:02,240 --> 03:41:02,480
VIDEOCAST.

5716
03:41:02,480 --> 03:41:04,280
SO I'M GOING TO GO ON AND GO TO

5717
03:41:04,280 --> 03:41:08,800
AMY AND I ASK EVERYBODY TO BE AS

5718
03:41:08,800 --> 03:41:10,520
BRIEF AS THEY CAN MAKE THEIR

5719
03:41:10,520 --> 03:41:12,360
POINTS SO EVERYBODY WILL HAVE A

5720
03:41:12,360 --> 03:41:16,960
CHANCE TO SAY THEIR PIECE.

5721
03:41:16,960 --> 03:41:18,800
AMY.

5722
03:41:18,800 --> 03:41:20,280
>>THANK YOU.

5723
03:41:20,280 --> 03:41:22,280
AND I WAS REALLY THINKING HARD

5724
03:41:22,280 --> 03:41:23,360
IF I WAS GOING TO SAY ANYTHING

5725
03:41:23,360 --> 03:41:26,160
BUT IN THE END I DECIDED I HAD

5726
03:41:26,160 --> 03:41:28,560
TO AND RESPONSE TO STEPHEN'S

5727
03:41:28,560 --> 03:41:29,640
CLAIM THAT HE DOESN'T WANT TO

5728
03:41:29,640 --> 03:41:32,080
ACCEPT THE PREMISE THAT

5729
03:41:32,080 --> 03:41:33,360
INTELLECTUAL DISABILITIES IS

5730
03:41:33,360 --> 03:41:34,680
LIMITING AND OTHER COMMENTS THAT

5731
03:41:34,680 --> 03:41:37,320
FOLLOWED ABOUT THE COGNITIVE

5732
03:41:37,320 --> 03:41:38,360
CAPACITIES THAT ARE HIDDEN IN

5733
03:41:38,360 --> 03:41:40,080
MANY AUTISTIC PEOPLE OR THE

5734
03:41:40,080 --> 03:41:41,040
PERCEPTION THAT THERE IS.

5735
03:41:41,040 --> 03:41:42,160
I'M SORRY THAT YOU DON'T WANT TO

5736
03:41:42,160 --> 03:41:44,560
ACCEPT THAT PREMISE, STEPHEN,

5737
03:41:44,560 --> 03:41:45,760
BUT INTELLECTUAL SIGNIFICANT

5738
03:41:45,760 --> 03:41:47,480
DISABILITIES IS EXTRAORDINARILY

5739
03:41:47,480 --> 03:41:48,560
LIMITING.

5740
03:41:48,560 --> 03:41:49,680
MY SON IS 24.

5741
03:41:49,680 --> 03:41:50,760
HE LIVES AT HOME.

5742
03:41:50,760 --> 03:41:53,280
HE CAN'T CROSS THE STREET BY

5743
03:41:53,280 --> 03:41:53,520
HIMSELF.

5744
03:41:53,520 --> 03:41:55,280
HE IS NEVER GOING TO GO TO

5745
03:41:55,280 --> 03:41:56,840
COLLEGE, DRIVE, HAVE MEANINGFUL

5746
03:41:56,840 --> 03:42:00,840
WORK, HAVE A ROMANTIC

5747
03:42:00,840 --> 03:42:01,160
RELATIONSHIP.

5748
03:42:01,160 --> 03:42:02,880
AND HE GETS A LOT OF JOY FROM

5749
03:42:02,880 --> 03:42:04,000
WATCHING SESAME STREET.

5750
03:42:04,000 --> 03:42:05,640
AND THAT IS FINE.

5751
03:42:05,640 --> 03:42:09,000
THAT DOESN'T MAKE HIM ANY LESS

5752
03:42:09,000 --> 03:42:12,080
HUMOR DESERVING OF OUR ATTENTION

5753
03:42:12,080 --> 03:42:16,200
OR OUR LABOR TO EXPAND HIS

5754
03:42:16,200 --> 03:42:16,480
HORIZONS.

5755
03:42:16,480 --> 03:42:18,920
AND INCREASE HIS COMMUNICATIVE

5756
03:42:18,920 --> 03:42:22,640
CAPABILITIES AND JUST HIS

5757
03:42:22,640 --> 03:42:24,280
OPTIONS TO OPERATE IN THE WORLD.

5758
03:42:24,280 --> 03:42:27,200
BUT I'M SAYING A LOT OF THIS

5759
03:42:27,200 --> 03:42:29,560
SANITIZING OF AUTISM THAT NOBODY

5760
03:42:29,560 --> 03:42:30,960
HAS A REAL INTELLECTUAL

5761
03:42:30,960 --> 03:42:32,520
DISABILITY AND EVERYBODY HAS

5762
03:42:32,520 --> 03:42:34,200
THIS INTACT MIND INSIDE THAT CAN

5763
03:42:34,200 --> 03:42:35,200
BE JUST ACCESSED.

5764
03:42:35,200 --> 03:42:36,920
THERE IS NO EVIDENCE THAT THAT

5765
03:42:36,920 --> 03:42:37,880
IS TRUE.

5766
03:42:37,880 --> 03:42:40,240
AND WE CAN'T PRETEND THAT

5767
03:42:40,240 --> 03:42:41,360
INTELLECTUAL DISABILITY AWAY.

5768
03:42:41,360 --> 03:42:44,360
IT'S SUCH -- IT IS A LIMITING

5769
03:42:44,360 --> 03:42:44,560
THING.

5770
03:42:44,560 --> 03:42:47,560
AND I JUST WANT TO JUST IMPLORE

5771
03:42:47,560 --> 03:42:48,400
YOU NOT TO FALL INTO THIS TRAP

5772
03:42:48,400 --> 03:42:53,160
THAT WE ARE SEEING WHERE THIS IS

5773
03:42:53,160 --> 03:42:54,360
WHY FACILITATED COMMUNICATION IS

5774
03:42:54,360 --> 03:42:56,320
RESURGING NOW.

5775
03:42:56,320 --> 03:42:57,920
OR POLICIES ARE COMING OUT FROM

5776
03:42:57,920 --> 03:43:01,040
STATES GETTING RID OF

5777
03:43:01,040 --> 03:43:03,200
DISABILITY-SPECIFIC SETTINGS AND

5778
03:43:03,200 --> 03:43:05,440
CERTAIN VOCATIONAL SETTINGS FOR

5779
03:43:05,440 --> 03:43:06,480
PEOPLE WITH DEVELOPMENTAL

5780
03:43:06,480 --> 03:43:08,560
DISABILITIES AND PEOPLE AT MY

5781
03:43:08,560 --> 03:43:10,080
SON ARE SITTING AT HOME.

5782
03:43:10,080 --> 03:43:11,160
WHEN YOU CLOSE THOSE SETTINGS

5783
03:43:11,160 --> 03:43:14,200
FOR PEOPLE WHO REALLY NEED THEM,

5784
03:43:14,200 --> 03:43:15,800
THEY DON'T HAVE ACCESS TO THE

5785
03:43:15,800 --> 03:43:17,480
SUPPORTS THAT THEY NEED.

5786
03:43:17,480 --> 03:43:19,320
SO, WHILE IT WOULD BE LOVELY IF

5787
03:43:19,320 --> 03:43:21,760
EVERYBODY HAD A TYPICAL OR

5788
03:43:21,760 --> 03:43:22,600
GENIUS INTELLECT, IT'S JUST NOT

5789
03:43:22,600 --> 03:43:23,400
THE CASE.

5790
03:43:23,400 --> 03:43:25,600
AND I JUST WANT EVERYBODY TO

5791
03:43:25,600 --> 03:43:26,560
REMEMBER THAT.

5792
03:43:26,560 --> 03:43:31,040
>>THANK YOU, AMY.

5793
03:43:31,040 --> 03:43:31,920
>>HI, TO THE POINT ABOUT

5794
03:43:31,920 --> 03:43:34,600
PUTTING A BUNCH OF DATA IN A BIG

5795
03:43:34,600 --> 03:43:37,320
PLACE TO STORE FOR PEOPLE TO

5796
03:43:37,320 --> 03:43:40,440
MINE, I JUST WANTED TO BRING

5797
03:43:40,440 --> 03:43:41,920
FROM MY BACKGROUND THAT THERE IS

5798
03:43:41,920 --> 03:43:44,920
A FRAMEWORK FOR THAT THAT IS

5799
03:43:44,920 --> 03:43:48,000
NIDCD SUPPORTED AND IT'S BRIAN

5800
03:43:48,000 --> 03:43:49,520
McCLINY IS THE MASTERMIND

5801
03:43:49,520 --> 03:43:51,920
BEHIND IT.

5802
03:43:51,920 --> 03:43:56,600
IT'S APHASIA DOT TOPIC DOT-ORG.

5803
03:43:56,600 --> 03:43:58,920
HE'S AT CARNEGIE MELON.

5804
03:43:58,920 --> 03:44:00,600
THERE IS 130,000 HITS ON THAT

5805
03:44:00,600 --> 03:44:02,520
PAGE AND DOZENS OF RESEARCHERS

5806
03:44:02,520 --> 03:44:03,600
SUPPORTING THAT AND I DON'T KNOW

5807
03:44:03,600 --> 03:44:05,320
HOW MANY PUBLICATIONS HAVE COME

5808
03:44:05,320 --> 03:44:07,080
OUT OF THAT.

5809
03:44:07,080 --> 03:44:10,240
AND AS FAR AS ENRICHING THE

5810
03:44:10,240 --> 03:44:11,160
LITERATURE, IT'S HELPED PROVIDE

5811
03:44:11,160 --> 03:44:13,520
DISABILITY AND VALIDITY AND

5812
03:44:13,520 --> 03:44:15,240
RELIABILITY TO OUR DISCOURSE

5813
03:44:15,240 --> 03:44:15,560
LITERATURE.

5814
03:44:15,560 --> 03:44:18,280
AND FROM THAT, THERE HAS BEEN

5815
03:44:18,280 --> 03:44:20,120
DEVELOPED BRIGHT HEMISPHERE

5816
03:44:20,120 --> 03:44:22,800
DISCOURSE TOPICS,INS FLUENCY TOP

5817
03:44:22,800 --> 03:44:23,000
BANK.

5818
03:44:23,000 --> 03:44:25,120
AND I'M PRETTY CONFIDENCE IF YOU

5819
03:44:25,120 --> 03:44:26,440
REACHED OUT TO BRIAN, HE WOULD

5820
03:44:26,440 --> 03:44:27,640
BE INTERESTED IN HELPING THIS

5821
03:44:27,640 --> 03:44:29,680
GROUP OF RESEARCHERS.

5822
03:44:29,680 --> 03:44:30,760
I'M DONE.

5823
03:44:30,760 --> 03:44:33,040
>>THANK YOU.

5824
03:44:33,040 --> 03:44:33,280
KRISTI.

5825
03:44:33,280 --> 03:44:34,960
>>THANK YOU SO MUCH AND I

5826
03:44:34,960 --> 03:44:37,360
REALLY APPRECIATE AMY CHIMING IN

5827
03:44:37,360 --> 03:44:38,200
WITH HER COMMENTS AND IN

5828
03:44:38,200 --> 03:44:38,720
GENERAL.

5829
03:44:38,720 --> 03:44:40,120
I HAVE A VERY PRACTICAL QUESTION

5830
03:44:40,120 --> 03:44:41,200
THAT I SPECIFICALLY LIKE TO

5831
03:44:41,200 --> 03:44:43,200
ADDRESS TO JORDYN AND GRANT BUT

5832
03:44:43,200 --> 03:44:45,880
ALSO WOULD LOVE THE FEEDBACK OF

5833
03:44:45,880 --> 03:44:48,440
THE INCREDIBLE PANEL HERE.

5834
03:44:48,440 --> 03:44:51,120
ON WHAT TERM TO USE GOING

5835
03:44:51,120 --> 03:44:51,440
FORWARD.

5836
03:44:51,440 --> 03:44:53,680
WE TALKED ABOUT THE

5837
03:44:53,680 --> 03:44:54,880
HETEROGENEITY, PHENOTYPING.

5838
03:44:54,880 --> 03:44:58,480
WE ALL RECOGNIZE AND APPRECIATE

5839
03:44:58,480 --> 03:45:00,520
THE BREATH OF THE SPECTRUM,

5840
03:45:00,520 --> 03:45:02,720
INCLUDING THE MINIMALLY VERBAL

5841
03:45:02,720 --> 03:45:04,640
NON-SPEAKING SPECTRUM.

5842
03:45:04,640 --> 03:45:08,080
I SPENT -- I SPENT A LOT OF TIME

5843
03:45:08,080 --> 03:45:11,360
FIGURING OUT HOW TO DISCUSS THIS

5844
03:45:11,360 --> 03:45:13,640
POPULATION NOT ONLY IN MY DAILY

5845
03:45:13,640 --> 03:45:13,840
LIFE.

5846
03:45:13,840 --> 03:45:17,640
AGAIN I'M A PARENT OF A

5847
03:45:17,640 --> 03:45:19,160
NON-SPEAKING PROFOUNDLY

5848
03:45:19,160 --> 03:45:20,200
INTELLECTUALLY DISABLED YOUNG

5849
03:45:20,200 --> 03:45:20,400
CHILD.

5850
03:45:20,400 --> 03:45:21,040
HE IS 11.

5851
03:45:21,040 --> 03:45:24,680
HE HAS A GENETIC DISORDER.

5852
03:45:24,680 --> 03:45:28,120
HE STRUGGLES WITH VERY, VERY

5853
03:45:28,120 --> 03:45:30,120
BASIC TASKS.

5854
03:45:30,120 --> 03:45:31,600
TO AMY'S POINT.

5855
03:45:31,600 --> 03:45:33,880
AAC HAS BEEN GIVEN TO HIM SINCE

5856
03:45:33,880 --> 03:45:34,560
HE WAS TWO.

5857
03:45:34,560 --> 03:45:37,680
IT'S STILL EMERGING.

5858
03:45:37,680 --> 03:45:40,360
AND SO THERE IS IN MY DAILY LIFE

5859
03:45:40,360 --> 03:45:41,400
THIS STRUGGLE TO ACKNOWLEDGE THE

5860
03:45:41,400 --> 03:45:42,760
BREATH OF THE SPECTRUM BUT ALSO

5861
03:45:42,760 --> 03:45:44,720
IN MY PROFESSIONAL LIFE WRITING

5862
03:45:44,720 --> 03:45:46,960
ABOUT IT IN LITERATURE SO OTHER

5863
03:45:46,960 --> 03:45:48,000
RESEARCHERS CAN FIND IT SO WE

5864
03:45:48,000 --> 03:45:50,920
CAN HAVE CONFERENCES AND TOPICS

5865
03:45:50,920 --> 03:45:52,200
AROUND THIS POPULATION AND

5866
03:45:52,200 --> 03:45:52,560
DISCUSSION.

5867
03:45:52,560 --> 03:45:55,000
SO I'D REALLY LOVE A PRACTICAL

5868
03:45:55,000 --> 03:45:56,760
DISCUSSION ON WHAT TERM TO USE

5869
03:45:56,760 --> 03:45:59,080
GOING FORWARD.

5870
03:45:59,080 --> 03:46:00,520
AGAIN BOTH FROM JORDYN AND GRANT

5871
03:46:00,520 --> 03:46:01,400
AND ANY OTHER RESEARCHERS IN

5872
03:46:01,400 --> 03:46:06,360
THIS POPULATION SO WE CAN MOVE

5873
03:46:06,360 --> 03:46:07,560
IT FORWARD BY APPRECIATING AND

5874
03:46:07,560 --> 03:46:09,520
IDENTIFYING THE NUANCE.

5875
03:46:09,520 --> 03:46:11,000
>>THANK YOU.

5876
03:46:11,000 --> 03:46:11,600
KRISTI.

5877
03:46:11,600 --> 03:46:13,480
SO I DON'T KNOW WHETHER JORDYN

5878
03:46:13,480 --> 03:46:23,960
OR GRANT WANTS TO GO FIRST?

5879
03:46:27,560 --> 03:46:37,760
>>GRANT: SURE.

5880
03:46:45,040 --> 03:46:55,440
I USE NON-SPEAKING WITH HIGH

5881
03:47:07,440 --> 03:47:14,600
SUPPORT NEEDS.

5882
03:47:14,600 --> 03:47:16,280
>>THANK YOU, GRANT.

5883
03:47:16,280 --> 03:47:17,960
WE'LL WAIT FOR A MINUTE WHILE

5884
03:47:17,960 --> 03:47:21,640
JORDYN IS PREPARING HER RESPONSE

5885
03:47:21,640 --> 03:47:31,840
RESPONSE.

5886
03:48:05,720 --> 03:48:07,120
>>I ALSO USE NON SPEAKING
AND I

5887
03:48:07,120 --> 03:48:08,440
THINK IT'S HELPFUL TO TALK ABOUT

5888
03:48:08,440 --> 03:48:10,760
THE SUPPORTS AND SERVICES THAT A

5889
03:48:10,760 --> 03:48:15,200
PERSON BENEFITS FROM.

5890
03:48:15,200 --> 03:48:17,160
>>THANK YOU, JORDYN.

5891
03:48:17,160 --> 03:48:18,880
SO COMPARABLE TO WHAT GRANT WAS

5892
03:48:18,880 --> 03:48:19,640
POINTING OUT.

5893
03:48:19,640 --> 03:48:21,560
SO THE SUPPORT NEEDS.

5894
03:48:21,560 --> 03:48:24,920
OKAY, I'M GOING TO TAKE THE --

5895
03:48:24,920 --> 03:48:26,560
I'M NOT THE CHAIR BUT I'M ONE OF

5896
03:48:26,560 --> 03:48:27,280
THE CHAIRS.

5897
03:48:27,280 --> 03:48:29,160
I'M GOING TO TAKE MY PREROGATIVE

5898
03:48:29,160 --> 03:48:32,200
AND SAY THAT WE NEED TO -- WE

5899
03:48:32,200 --> 03:48:33,480
ALL HAVE BEEN SITTING FOR A

5900
03:48:33,480 --> 03:48:34,680
WHILE AND WE SAID WE WERE GOING

5901
03:48:34,680 --> 03:48:36,160
TO STOP AT 5:00.

5902
03:48:36,160 --> 03:48:41,840
SO WE WILL, BUT I WANT TO GIVE

5903
03:48:41,840 --> 03:48:45,360
SOME FINAL WORDS TO SAY IF WE

5904
03:48:45,360 --> 03:48:45,840
MAY.

5905
03:48:45,840 --> 03:48:54,520
SO, HELEN, WOULD YOU LIKE TO GO

5906
03:48:54,520 --> 03:48:55,440
FIRST?

5907
03:48:55,440 --> 03:48:57,480
>>HELEN: I GUESS SO.

5908
03:48:57,480 --> 03:48:58,800
I WANT TO THANK EVERYONE.

5909
03:48:58,800 --> 03:49:01,120
THIS WAS A RICH AND WIDE RANGING

5910
03:49:01,120 --> 03:49:01,400
DISCUSSION.

5911
03:49:01,400 --> 03:49:04,600
I ESPECIALLY ENJOYED THIS

5912
03:49:04,600 --> 03:49:06,080
AFTERNOON, HOW WE FLIPPED

5913
03:49:06,080 --> 03:49:10,120
BETWEEN THE SORT OF MORE

5914
03:49:10,120 --> 03:49:11,400
PERSONAL, MORE EXPERIENTIAL

5915
03:49:11,400 --> 03:49:14,640
DISCUSSION OF THE TOPICS AT HAND

5916
03:49:14,640 --> 03:49:17,040
AND THEN THE REALLY WONDERFUL

5917
03:49:17,040 --> 03:49:22,680
SCIENTIFIC CONTRIBUTIONS AROUND

5918
03:49:22,680 --> 03:49:24,040
DESIGN AND OUTCOME MEASURES AND

5919
03:49:24,040 --> 03:49:26,160
TERMINOLOGY AND INFRASTRUCTURE

5920
03:49:26,160 --> 03:49:28,200
NEEDS AND SO FORTH.

5921
03:49:28,200 --> 03:49:38,760
AND TO ME, I THINK THAT CAPTURED

5922
03:49:39,200 --> 03:49:40,560
WHAT WE WERE LOOKING TO HEAR

5923
03:49:40,560 --> 03:49:42,000
ABOUT, TO LEARN ABOUT THE LAST

5924
03:49:42,000 --> 03:49:44,320
COUPLE OF DAYS.

5925
03:49:44,320 --> 03:49:48,560
AND I APPRECIATE EVERYONE'S

5926
03:49:48,560 --> 03:49:49,800
CONTRIBUTION.

5927
03:49:49,800 --> 03:49:52,040
THIS IS REALLY HARD FOR ALL OF

5928
03:49:52,040 --> 03:49:54,480
US TO TALK ABOUT SOME OF THE

5929
03:49:54,480 --> 03:49:57,520
TOPICS UNDER DISCUSSION.

5930
03:49:57,520 --> 03:50:01,000
BUT I THINK EVERYONE'S COMMENTS,

5931
03:50:01,000 --> 03:50:02,560
HOWEVER THEY WERE EXPRESSED,

5932
03:50:02,560 --> 03:50:05,360
WERE IMPORTANT FOR THE ENTIRE

5933
03:50:05,360 --> 03:50:07,920
COMMUNITY TO HEAR BECAUSE WE ARE

5934
03:50:07,920 --> 03:50:10,560
A TEAM, WHOMEVER USED THAT

5935
03:50:10,560 --> 03:50:13,400
PHRASE EARLIER.

5936
03:50:13,400 --> 03:50:16,400
IN CASE SOMEBODY DOESN'T SAY

5937
03:50:16,400 --> 03:50:20,760
THIS, THE WEBINAR WILL BE MADE

5938
03:50:20,760 --> 03:50:24,480
AVAILABLE PUBLICLY THROUGH THE

5939
03:50:24,480 --> 03:50:25,480
NIDCD WEBSITE.

5940
03:50:25,480 --> 03:50:27,280
AND SO WE'LL LOOK OUT FOR THAT

5941
03:50:27,280 --> 03:50:29,800
AND I'M SURE WE'LL BE INFORMING

5942
03:50:29,800 --> 03:50:32,640
THE COMMUNITY WHEN THAT IS GOING

5943
03:50:32,640 --> 03:50:33,960
TO BE AVAILABLE.

5944
03:50:33,960 --> 03:50:35,520
THERE WAS SO MUCH TO TAKE IN.

5945
03:50:35,520 --> 03:50:40,200
I KNOW I'M LOOKING FORWARD TO

5946
03:50:40,200 --> 03:50:43,000
REVIEWING MANY PARTS OF WHAT WE

5947
03:50:43,000 --> 03:50:45,520
HEARD OVER THE LAST TWO DAYS.

5948
03:50:45,520 --> 03:50:47,840
SO JUST THANK YOU TO EVERYONE.

5949
03:50:47,840 --> 03:50:50,840
THIS HAS BEEN A GLORIOUS COUPLE

5950
03:50:50,840 --> 03:50:52,560
OF DAYS.

5951
03:50:52,560 --> 03:50:52,800
CONNIE?

5952
03:50:52,800 --> 03:50:54,040
>>CONNIE: I CONCUR.

5953
03:50:54,040 --> 03:50:56,880
A GOOD REVIEW WOULD BE GREAT BUT

5954
03:50:56,880 --> 03:50:58,680
NOT TODAY.

5955
03:50:58,680 --> 03:50:58,880
LATER.

5956
03:50:58,880 --> 03:51:05,360
I JUST WANT TO REALLY THANK

5957
03:51:05,360 --> 03:51:05,640
EVERYBODY.

5958
03:51:05,640 --> 03:51:07,440
MATHY SAID THIS IS A REALLY

5959
03:51:07,440 --> 03:51:09,920
COMPLICATED AND EMOTIONALLY

5960
03:51:09,920 --> 03:51:11,280
FRAUGHT TOPIC.

5961
03:51:11,280 --> 03:51:14,560
AND I REALLY APPRECIATE

5962
03:51:14,560 --> 03:51:16,360
EVERYONE'S ABILITY TO SHARE AND

5963
03:51:16,360 --> 03:51:18,440
THEIR COURAGE IN SAYING WHAT WAS

5964
03:51:18,440 --> 03:51:20,760
ON THEIR MINDS OR FROM THEIR

5965
03:51:20,760 --> 03:51:22,520
EXPERIENCE AND SO ON.

5966
03:51:22,520 --> 03:51:25,120
SO I WANT TO THANK EVERYONE FOR

5967
03:51:25,120 --> 03:51:26,360
PARTICIPATING.

5968
03:51:26,360 --> 03:51:30,480
I THINK IT'S BEEN GREAT.

5969
03:51:30,480 --> 03:51:37,360
>>JUDITH COOPER: THANK
YOU.

5970
03:51:37,360 --> 03:51:41,520
I CAN'T TELL YOU HOW MUCH WE,

5971
03:51:41,520 --> 03:51:44,560
THE PLANNERS, APPRECIATE THESE

5972
03:51:44,560 --> 03:51:46,560
LAST TWO DAYS.

5973
03:51:46,560 --> 03:51:48,360
AND THE SPIRIT WITH WHICH

5974
03:51:48,360 --> 03:51:49,400
EVERYONE PARTICIPATED.

5975
03:51:49,400 --> 03:51:52,600
I DO WANT TO SAY AS FAR AS NEXT

5976
03:51:52,600 --> 03:51:54,920
STEPS, WHAT CAN YOU EXPECT?

5977
03:51:54,920 --> 03:51:56,960
LET ME JUST SAY A FEW THINGS.

5978
03:51:56,960 --> 03:51:58,800
HELEN DID SAY THAT THE WEBINAR

5979
03:51:58,800 --> 03:52:01,440
WILL BE ON OUR WEBSITE BUT IT

5980
03:52:01,440 --> 03:52:06,080
WILL ALSO BE UP ON THE NIH

5981
03:52:06,080 --> 03:52:08,440
VIDEOCAST WEBSITE UNDER

5982
03:52:08,440 --> 03:52:08,680
ARCHIVED.

5983
03:52:08,680 --> 03:52:14,320
SO THAT IS WHERE IT WILL LIVE

5984
03:52:14,320 --> 03:52:14,520
FOREVER.

5985
03:52:14,520 --> 03:52:16,200
AND WHEN WILL IT BE AVAILABLE?

5986
03:52:16,200 --> 03:52:18,520
WE HAVE TO DO A LITTLE BIT OF

5987
03:52:18,520 --> 03:52:20,320
EDITING, IS MY UNDERSTANDING,

5988
03:52:20,320 --> 03:52:21,680
PROBABLY WILL BE MAYBE A WEEK OR

5989
03:52:21,680 --> 03:52:23,560
TWO OR SO.

5990
03:52:23,560 --> 03:52:24,720
BUT IT'S COMING.

5991
03:52:24,720 --> 03:52:28,240
THAT'S ONE THING.

5992
03:52:28,240 --> 03:52:31,080
SEVERAL PEOPLE HAVE POINTED NIH

5993
03:52:31,080 --> 03:52:32,160
NEEDS TOO.

5994
03:52:32,160 --> 03:52:33,680
SO JUDITH ARE YOU LISTENING?

5995
03:52:33,680 --> 03:52:36,160
I WANT TO REMIND YOU THAT THERE

5996
03:52:36,160 --> 03:52:38,240
ARE FIVE INSTITUTES AT THE NIH

5997
03:52:38,240 --> 03:52:42,000
THAT SUPPORT AUTISM RESEARCH.

5998
03:52:42,000 --> 03:52:42,840
ONE OF THEM SUPPORTS THE

5999
03:52:42,840 --> 03:52:44,400
NATIONAL AUTISM DATABASE.

6000
03:52:44,400 --> 03:52:46,760
WE TALKED ABOUT THE DATABASE.

6001
03:52:46,760 --> 03:52:50,600
A LOT OF MY COLLEAGUES WERE

6002
03:52:50,600 --> 03:52:52,040
LISTENING TO THIS WEBINAR.

6003
03:52:52,040 --> 03:52:55,960
SO A LOT OF YOUR IDEAS WILL GO

6004
03:52:55,960 --> 03:53:02,400
BACK TO THAT GROUP.

6005
03:53:02,400 --> 03:53:03,320
AND THEN I WOULD SAY -- I SAID

6006
03:53:03,320 --> 03:53:04,720
AT THE GIPPING THAT WE HAVE

6007
03:53:04,720 --> 03:53:07,920
SUPPORTED WORK FOCUSED ON THIS

6008
03:53:07,920 --> 03:53:11,520
POPULATION AND ALSO ON

6009
03:53:11,520 --> 03:53:12,560
AUGMENTIVE AND ALTERNATIVE.

6010
03:53:12,560 --> 03:53:13,800
WE CONTINUE TO.

6011
03:53:13,800 --> 03:53:16,080
IF YOU HAVE AN IDEA, COME ON AND

6012
03:53:16,080 --> 03:53:16,360
SUBMIT.

6013
03:53:16,360 --> 03:53:17,920
ESPECIALLY NEW INVESTIGATORS.

6014
03:53:17,920 --> 03:53:20,400
WE ARE READY FOR THE NEW TEAM OF

6015
03:53:20,400 --> 03:53:24,040
NEW IDEAS TO COME ONBOARD.

6016
03:53:24,040 --> 03:53:26,520
BUT I'M NOT SO NAIVE AS TO THINK

6017
03:53:26,520 --> 03:53:28,320
THAT THERE AREN'T SOME BIG

6018
03:53:28,320 --> 03:53:30,200
ISSUES THAT WE NEED TO THINK

6019
03:53:30,200 --> 03:53:34,400
ABOUT HOW WE MIGHT IMPLEMENT

6020
03:53:34,400 --> 03:53:34,800
THOSE.

6021
03:53:34,800 --> 03:53:36,160
AND I MIGHT ALSO JUST ADD THAT

6022
03:53:36,160 --> 03:53:39,480
WE DO HAVE A NEW NIDCD STRATEGIC

6023
03:53:39,480 --> 03:53:44,440
PLAN AND ONE OF OUR LIMITED

6024
03:53:44,440 --> 03:53:47,120
GOALS AND THEMES IS ABOUT

6025
03:53:47,120 --> 03:53:47,960
TRANSLATIONAL RESEARCH.

6026
03:53:47,960 --> 03:53:50,680
SO, WE ARE MOVING IN THAT

6027
03:53:50,680 --> 03:53:51,200
DIRECTION TOO.

6028
03:53:51,200 --> 03:53:55,200
SO, I HAVE A LOT OF HOPE FOR --

6029
03:53:55,200 --> 03:53:56,920
IF WE LOOK DOWN THE ROAD,

6030
03:53:56,920 --> 03:53:59,400
ANOTHER 10 YEARS, THAT WE WILL

6031
03:53:59,400 --> 03:54:01,400
SEE THAT THIS MEETING LED TO

6032
03:54:01,400 --> 03:54:03,640
SOME REALLY IMPORTANT ISSUES.

6033
03:54:03,640 --> 03:54:07,280
THANK YOU VERY MUCH FOR YOUR

6034
03:54:07,280 --> 03:54:09,520
PARTICIPATION.

6035
03:54:09,520 --> 03:54:13,960
[ BACKGROUND NOISE ]

6036
03:54:13,960 --> 03:54:16,440
>>IS SOMEONE NEEDING TO
SAY ONE

6037
03:54:16,440 --> 03:54:22,400
MORE THING?

6038
03:54:22,400 --> 03:54:24,880
[ BACKGROUND NOISE ]

6039
03:54:24,880 --> 03:54:26,240
>>INGLE ANNA IS NOT ON
MUTE.

6040
03:54:26,240 --> 03:54:29,200
SHE IS SUPPORTING HER SON IS MY

6041
03:54:29,200 --> 03:54:29,880
HYPOTHESIS.

6042
03:54:29,880 --> 03:54:33,400
>>SO I WANT TO SAY THANK
YOU

6043
03:54:33,400 --> 03:54:37,000
AND WE'LL BE IN TOUCH.

6044
03:54:37,000 --> 03:54:47,360
>>THANK YOU ALL.