>>WELCOME TO DAY 2 BE PATIENT RESPECTING THE ADDITIONAL TIME NEEDED TO FORELATE A MESSAGE AND MOST IMPORTANTLY, PLEASE DO NOT SPEAK OVER THEM. POINT 3, IF YOU WILL SHOW THE SLIDE, PLEASE. FOR THOSE OF YOU WHO NEED A CURRENT AGENDA, YOU CAN FIND IT ON THE NIDCD WEBSITE AT THIS LINK. AND ALSO I THINK IT IS ATTACHED TO THE VIDEOCAST. IF YOU HAVE TECHNICAL PROBLEMS, WE ARE GIVING YOU TWO NAMES. YOU CAN EITHER E-MAIL TANJI OR CALL CHRIS ADAMS AT THAT PHONE NUMBER. AND, I GUESS A FINAL COMMENT WHILE TAN GEE IS TAKING THAT SLIDE DOWN. I WANTED TO SAY THANKS AGAIN TO ALL OF YOU FOR YOUR PARTICIPATION IN AND YOUR INPUT AND WE ARE READY TO GET STARTED. AND I THINK AS WE MOVE INTO, AS WE DID YESTERDAY, IF YOU'RE NOT SPEAKING, PLEASE TURN YOUR CAMERA OFF AND PLEASE MUTE. AND THEN THE SPEAKERS SHOULD APPEAR AT THE TOP OF THE SCREEN. SO, I'M TURNING IT OVER TO CONNIE. >>CONNIE KASARI: I'M LOOKING FORWARD TO A EXCITING AND RICH DISCUSSION TODAY. WE ARE GOING TO START OFF WITH SESSION 2, RESEARCH DESIGNS, METHODS FOR INTERVENTION STUDIES. WE ARE GOING TO START WITH AN OVERVIEW OF COMBINED TREATMENTS BY LARRY SCAHILL. >>LARRY SCAHILL: YOU'RE MUTED,, AND WE SUCCESSFULLY DID THIS A MINUTE AGO. >>JUDITH COOPER: WE DON'T HEAR YOU. YOUR ICON IS NOT CLICKED. >>FELICE: WE'LL SEE WHAT WE CAN DO. GIVE ME ONE SECOND TO LOOK FOR HIM. I CAN ONLY ASK HIM TO UNMUTE HIMSELF. I CAN'T DO IT. >>CONNIE KASARI: I'M WONDERING IF WE CAN TAKE AWAY THE BOXES EXCEPT FOR THE PEOPLE WHO ARE IN THIS SESSION THAT WILL HAVE THEIR CAMERAS ON? THAT MIGHT BE LESS DISTRACTING. LARRY, IF THERE IS SOMETHING I CAN DO TO HELP, LET ME KNOW, ALTHOUGH I'M PROBABLY THE LEAST TECHNOLOGICALLY ADVANCED IN THIS GROUP. >>FELICE: I DON'T KNOW IF HE CAN HEAR YOU. CAN YOU HEAR US? >>JUDITH COOPER: I CAN'T SEEM TO GET RID OF THE BLACK BOX ON THE SCREEN. CHRIS, IS THAT YOU? >>FELICE: YOU DID IT FOR YOUR WORKSTATION. YOU CAN'T DO IT FOR EVERYONE. >>CONNIE KASARI: I SEE. >>JUDITH COOPER: SO IF I STOP MY VIDEO, DOES THAT HELP? LET ME SEE. >>FELICE: IT WOULDN'T MATTER. I WOULD RECOMMEND THAT HE GO OUT AND COME BACK IN, IF HE HAS A PROBLEM. >>CONNIE KASARI: DID YOU HEAR THAT? CAN YOU GO OUT AND START OVER AGAIN? >>JUDITH COOPER: HE HAS ANOTHER CAMERA. NOW LARRY, CAN YOU SPEAK? >>LARRY SCAHILL: I JUST RETREATED TO LAPTOP. THERE WAS A BOX COVERING THE PLACE WHERE YOU USUALLY SEE THE UNMUTE BUTTON. IT SAYS TYPE HERE FOR SEARCH. LET'S SEE IF THIS WORKS. >>CONNIE KASARI: GREAT, I SEE YOUR SCREEN. BUT WE DON'T WANT THAT. >>LARRY SCAHILL: HOW IS THAT? LET'S GET THIS GOING. SO I HAVE ABOUT NINE SLIDES AND I'LL TRY TO TALK FAST AND TRY NOT TO REHASH. BUT, USUAL STATEMENT ABOUT DISCLOSURES AND I'M WELL-TRAINED WELL-TRAINED. AND SO -- THIS IS A WONDERFUL META-ANALYSIS BY MICHAEL AND COMPANY. I WON'T GO INTO DETAIL. I WANT TO MAKE A COUPLE OF POINTS BECAUSE IT'S A STEP UP TO WHERE WE ARE GOING. FAIRLY LARGE SAMPLE, 60 STUDIES. OVER ALL SMALL BUT SIGNIFICANT EFFECT OF LANGUAGE. NOW THIS IS LANGUAGE ACROSS-THE-BOARD, NOT JUST MINIMALLY VERBAL. BUT NOTICE, LOWER AGE EQUIVALENT SCORES, WEAKER EFFECTS. WE ARE NOT DOING VERY WELL. INTERVENTION INTENSITY, DOSE, TYPE OF TREATMENT, AUTISM SEVERITY, CHRONOLOGICAL AGE, DIDN'T SEEM TO MATTER. WHAT DID SEEM TO MATTER IS WHETHER IT WAS DELIVERED BY A CLINICIAN OR A CLINICIAN+ CAREGIVER. I JUST MENTIONED THROUGH A HAMPTON AND KAISER, THEIR ANALYSIS, META-ANALYSIS SHOWED SIMILAR RESULTS BUT THE LARGEST EFFECT WAS CLINICIAN PLUS CAREGIVER. SO, I'M TALKING ABOUT COMBINED TREATMENTS. I'M NOT GOING TO TALK ABOUT STEP WEDGE AND MOST DESIGN, SMART DESIGN. I'M NOT GOING TO TALK ABOUT ANY OF THAT. I'LL LEAVE THAT TO OTHERS. BUT I WANT TO EMPHASIZE THAT I THINK IT'S TIME TO MOVE TO COMBINED TREATMENTS. AND I HOPE TO SELL THE IDEA. I'M GOING TO GIVE A FEW EXAMPLES. THOSE EXAMPLES ARE NOT TO PERSUADE JUST TO ILLUSTRATE. WHAT THE META-ANALYSIS SHOWED, OUR MAJOR FAULTS HAVE BEEN. MANY STUDIES IN THE 60 STUDY META-ANALYSIS, THEY DID NOT USE BLINDED ASSESSMENT. OFTENTIMES NOT CLEAR ENTRY CRITERIA. STILL BIG VARIABILITY. AND A LOT OF ATTRITION. LOTS OF MISSING DATA. AND IT TURNS OUT THAT MANY OF THESE RANDOMIZED TRIALS DID NOT USE INTENT TO TREAT ANALYSIS. SO, DO WE NEED TO TALK ABOUT NEW DESIGNS OR DO WE NEED TO TALK ABOUT MULTIMODAL TREATMENTS? I'M RIGHT NOW I'M THE LATTER. STUDY OF COMBINED TREATMENTS DOES NOT INHERENTLY MEAN YOU HAVE TO HAVE MORE COMPLICATED DESIGNS. IN FACT, STUDYING COMBINED TREATMENTS IS CHALLENGING ENOUGH. SO, STRAIGHTFORWARD DESIGNS, COMPLICATED BY COMBINED TREATMENTS. THIS IS MY FIRST FORAY INTO THIS IDEA OF COMBINING MODALITIES. SO THIS CAME FROM A PRACTICE GROUP OF THE ASSOCIATION OF BEHAVIOR ANALYSIS INTERNATIONAL. I WON'T GO INTO THE CRAZY DETAIL OF THIS SLIDE. BUT YOU CAN SEE THAT THEY ARE ADVANCING IN THIS WHITE PAPER THE IDEA THAT SPEECH-LANGUAGE PATHOLOGISTS AND BEHAVIOR ANALYSTS BRING SOMETHING UNIQUE AND IMPORTANT THAT COULD ACTUALLY BE BLENDED. AND TO THE BETTERMENT OF AN INTERVENTION. WE ARE DOING A PILOT STUDY HERE OF WHERE WE ARE TRYING TO SEE WHAT ADDED VALUE THERE CAN BE -- ABAI BASED LANGUAGE INTERVENTION FOR MINIMALLY VERBAL CHILDREN WITH ADDITIONAL CONSULTATION FROM A SPEECH-LANGUAGE PATHOLOGIST. SO ANOTHER WAY TO THINK ABOUT THIS IS LANGUAGE INTERVENTION PLUS DRUGS. OUTSIDE OF THE WORLD OF LANGUAGE INTERVENTION AND THE WORLD OF ANXIETY AND IN THE GENERAL PEDIATRIC POPULATION, DEPRESSION IN THE GENERAL PEDIATRIC POPULATION. AND IN AUTISM IN DISRUPTIVE BEHAVIOR. THERE IS MILEAGE FOR COMBINING BEHAVIORAL INTERVENTIONS WITH DRUGS. SO, I'M SURE EVERYBODY IS AWARE OF THE PAPER THAT WAS PUBLISHED IN THE FALL OF 21 ON INTERNASAL OXYTOCIN. A LARGE STUDY THAT SHOWED ABSOLUTELY NOTHING. AND OUT OF THIS -- PART OF THIS QUOTE IS CUT OFF. THIS IS FROM LARRY YOUNG AND CHARLES FORD IN AN EDITORIAL THEY WROTE AFTERWARDS. HE SAID THAT THEY FOUND NO EFFECT, NO SURPRISE TO THEM BECAUSE OXYTOCIN DOES NOT FACILITATE LEARNING ALL BY ITSELF. IN FUTURE TRIALS, OXYTOCIN SHOULD BE PAIRED WITH BEHAVIOR THERAPY. AND HERE IS AN EDITORIAL BY DAN GIVEN WIND IN THE NEW ENGLAND JOURNAL AND THE SAME ISSUE. HE SAID, MAYBE THEY HAD TOO WIDE OF AVERAGE RANGE AND MAYBE THEY NEED BETTER MEASUREMENT BUT OXYTOCIN WAS NOT PAIRED WITH BEHAVIORAL INTERVENTION. HE IS SAYING DON'T GIVE UP ON OXYTOCIN JUST YET, POINTING TO THE IDEA OF COMBINED TREATMENT. HERE IS POSSIBLE COMBINATION. AGAIN, IT'S AN EXAMPLE. IT'S NOT -- NOT TRYING TO PER ZAID. BUT RICHARD FRY AND COMPANY PUBLISHED A PAPER ON LEUKOBORE IN THAT SHOWED IMPROVEMENT IN VERBAL COMMUNICATION. I WILL ADD THESE WERE NOT MINIMALLY VERBAL CHILDREN BUT IT WAS SUPERIOR TO PLACEBO USING A STANDARDIZED LANGUAGE OUTCOME MEASURE. AND WE DID A STRUCTURED INTERVENTION WITH A VERY SIMILAR POPULATION, MODERATE LANGUAGE DELAY, SHOWING THAT THIS STRUCTURED INTERVENTION WAS BETTER THAN TREATMENT AS USUAL. WHY NOT COMBINE THEM? AGAIN, NOT PERSUADE THIS PARTICULAR IDEA BUT JUST THE IDEA. SO, POSSIBLE COMBINATIONS. LANGUAGE INTERVENTION. YOU KNOW THE LIST. DELIGHTED TO HEAR SO MUCH YESTERDAY ABOUT THE USE OF AUGMENTED DEVICES. I THINK THEY HAVE COME A LONG WAY SINCE I FIRST HEARD ABOUT THEM 20 YEARS AGO. AND BUT WHAT COULD THING A MENITATION STRATEGY BE? IT COULD BE A DRUG. IT COULD BE YOU HAVE A LANGUAGE INTERVENTION AND YOU ADD AUGMENTED COMMUNICATION, OR WONDERFUL THINGS WE HEARD ABOUT TECHNOLOGY WITH THE USE OF APPS AND OTHER THINGS AS A ADDITIVE TO THE LANGUAGE INTERVENTION. THANK YOU. >>CONNIE KASARI: THANK YOU. YOU WERE SPOT ON TIME WISE, LARRY. THANK YOU. SO NOW YOU HAVE TO STOP SHARING AND WE'RE GOING TO MOVE TO THE NEXT TALK, WHICH WILL BE DANIEL ALMIRALL TALKING ABOUT MULTILEVEL ADAPTIVE INTERVENTIONS, OPTIMIZING HOW WE TAILOR INTERVENTION TO THE UNIQUE AND CHANGING NEEDS OF EACH INDIVIDUAL AND THEIR ENVIRONMENT. I SHOWED THIS YESTERDAY. >>DANIEL ALMIRALL CAN YOU HEAR ME? CAN YOU SEE THE SLIDES I'M PUTTING UP RIGHT NOW AND THEN HOW ABOUT NOW? >>CONNIE KASARI: NOW WE SEE -- NOW WE SEE IT. OKAY. GOOD. >>DANIEL ALMIRALL: I GOT 7 MINUTES READY GO! MY GOAL IS TO INTRODUCE THIS IDEA OF ADAPTIVE INTERVENTIONS AND I'M GOING TO GO IN 7 MINUTES FROM THE PAST STRAIGHT THROUGH THE FUTURE. OKAY? HERE WE GO. SO HERE IS WHAT I'M GOING TO TRY TO DO IN 7 MINUTES. I'M GOING TO SHOW YOU AN EXAMPLE OF AN OLDER ADAPTIVE INTERVENTION IN AUTISM. YOU SAW A LITTLE BIT ABOUT IT YESTERDAY. I'M GOING TOY SHOULD YOU AN EXAMPLE OF AN OLDER SEQUENTIALLY RANDOMIZED TRIAL THAT WAS USED TO OPTIMIZE THIS ADAPTIVE INTERVENTION AND THEN I'M GOING TO SPEND THREE SLIDES ON WHAT I THINK THE FUTURE IS AND IT'S PRETTY EXCITING. ALL RIGHT. SO, I THINK YOU MIGHT HAVE SEEN THIS YESTERDAY. SO THE SETUP HERE IS, THESE ARE CHILDREN WITH AUTISM WHO ARE MINIMALLY VERBAL. THAT'S THE PHRASE WE WERE USING AT THE TIME. I KNOW YESTERDAY WE WERE HAVING CONVERSATIONS ABOUT THINKING MORE CAREFULLY ABOUT THE LANGUAGE AROUND THIS. AND IN THIS PARTICULAR ADAPTIVE INTERVENTION, THIS IS NOT A STUDY I'M SHOWING YOU. THIS IS AN INTERVENTION A CLINICIAN WOULD DO. WE WOULD PROVIDE IN STAGE I SOME INTERVENTION. IN THIS EXAMPLE, IT'S JASPER. AND THEN WE WOULD ASSESS RESPONSE STATUS AT THE END OF 12 WEEKS USING SOME TOOL THAT IS ALSO A PART OF INTERVENTION. THAT'S KEY, OKAY? WE CALL THAT A TAILORING VARIABLE. IN THIS PARTICULAR EXAMPLE, IF THE KID WAS A RESPONDER, WE STAY THE COURSE WITH JASPER. BUT IF THE KIDDO IS A SLOWER RESPONDER, WE MIGHT AUGMENT WITH, IN THIS CASE, IT WAS USING A DEVICE BUT YOU COULD IMAGINE ADAPTIVE INTERVENTIONS LIKE THIS TAILORING USING OTHER INTERVENTION OPTIONS SUCH AS MEDICATION, WHICH IS WHAT LARRY WAS JUST TALKING ABOUT, OR EVEN OTHER BEHAVIORAL INTERVENTIONS. BUT MY PURPOSE IN THESE 30 SECONDS WAS TO EXPLAIN WHAT IS AN ADAPTIVES INTERVENTION IN 30 SECONDS? THIS IS AN EXAMPLE OF, IT DOESN'T EVEN HAVE TO BE TWO STAGES. IT COULD BE 5 STAGES AND ALL THE KIDDOS DON'T EVEN NEED TO TRANSITION ALL AT 12 WEEKS. WE MIGHT HAVE SOME KIDDOS TRANSITIONING EARLIER VERSUS LATER, DEPENDING ON HOW THEY ARE DOING. THE SKY IS THE LIMIT. NEXT SLIDE. THOSE OF YOU ON THE CALL MIGHT -- AND ESPECIALLY NIH, WE HAVE TO THINK VERY CAREFULLY ABOUT THE THREE DIFFERENT WAYS WE CAN STRUCTURE RESEARCH ON ADAPTIVE INTERVENTION SYSTEM. ONE GROUP OF PEOPLE, EARLY-STAGE INVESTIGATORS MIGHT BE IN THE PILOTING FEASIBILITY ACCESSIBILITY STAGE. A SECOND GROUP OF INVESTIGATORS MIGHT BE IN THE OPTIMIZING STAGE AND A THIRD GROUP OF INVESTIGATORS MIGHT BE READY TO EVALUATE AN ADAPTIVE INTERVENTION. THEY HAVE SOMETHING LIKE THIS IN THEIR HANDS AND THEY ARE READY TO SAY, JUST LIKE LARRY SAID, THEY ARE READY TO SAY, IS THIS BETTER THAN TREATMENT AS USUAL? I WANTED TO SHOW YOU NUMBER 3 FIRST BECAUSE ALL OF YOU KNOW HOW TO DO NUMBER 3. IF WE WERE DOING NUMBER 3, WITH THE ADAPTIVE INTERVENTION I SHOWED EARLIER, THIS WOULD BE A VANILLA BUT VERY IMPORTANT, VERY POWERFUL RANDOMIZED TRIAL WHERE I WOULD COMPARE MY ADAPTIVE INTERVENTION VERSUS SOME TREATMENT AS USUAL. NOTHING WRONG WITH THIS. IT'S IMPORTANT AND IT REMAINS THE GOLD STANDARD FOR EVALUATION. BUT WHAT IF YOU'RE IN THE SECOND GROUP? WHAT IF YOU WANT TO OPTIMIZE? THERE YOU WANT TO REACH FOR A DIFFERENT KIND OF TRIAL DESIGN. ONE OF THE BIGGEST PROBLEMS WE HAVE IN OUR SCIENCE IS EVERYBODY REACHES FOR A RANDOMIZED TRIAL DESIGN TO ANSWER ALL QUESTIONS UNDER THE SUN BUT THAT SHOULD NOT BE THAT WAY. SO HERE IS ONE OF MANY TOOLS YOU CAN REACH FOR IS CALLED THE SMART. AND HERE IS A SMART THAT WE USED TO COME UP WITH THE ADAPTIVE INTERVENTION WE SHOWED YOU ERPER, OR ONE LIKE IT. THIS IS AN OLD STUDY NOW. YOU SEEN ME GIVE TALKS ON THIS FOR YEARS, BUT IT'S IMPORTANT BECAUSE IT BRINGS YOU UP TO SPEED BEFORE I TELL YOU WHAT THE FUTURE WILL BE. IN THIS STUDY, WE RANDOMIZED KIDDOS AT STAGE 1 TO WHETHER OR NOT YOU, IN THE CONTEXT OF JASPER, ALL THE KIDDOS GET JASPER, TO WHETHER OR NOT YOU GET THE DEVICE, AT STAGE I. WE WANTED TO KNOW AS A NISHANCE, DO ALL THE KIDS NEED THE DEVICE RIGHT OUT OF THE GATES? IF YOU DID NOT GET THE DEVICE AND YOU WERE A SLOWER RESPONDER, DO WE NEED TO ADD THE DEVICE LATER? SO WHAT ENDS UP HAPPENING IN A STUDY LIKE THIS, WE HAVE THREE INTERVENTIONS. WE HAVE ONE WHERE YOU NEVER GET THE DEVICE BUT IF YOU'RE SLOW RESPONDING, YOU AUGMENT WITH JASPER. YOU GO FROM 2-3 SESSIONS PER WEEK. WE HAVE A SECOND INTERVENTION WHERE YOU GET THE DEVICE UPFRONT. AND IF YOU'RE NOT DOING SO GOOD, YOU GO FROM 2-3 SESSIONS PER WEEK. AND THEN WE HAVE A THIRD PRE SENSION WHERE YOU DON'T GET THE DEVICE UPFRONT AND YOU GET THE DEVICE LATER IF YOU'RE A SLOW RESPONDER. I THINK YOU ALL HAVE READ THIS ARTICLE. THESE WERE TOOLS AT THE TIME WE WERE USING. THEY ARE OLDER NOW BUT STILL VERY NOVEL. AND HERE WE SHOWED PRETTY CLEARLY THAT INTRODUCING THE DEVICE EARLY AND INTENSIFYING GOING FROM 2-3 WEEKS FOR KIDDOS THAT ARE NOT -- THAT AREN'T RESPONDING AS WELL, WAS THE BETTER INTERVENTION TO IMPROVE LANGUAGE OUTCOMES. OKAY, WHAT IS THE FUTURE OF ADAPTIVE INTERVENTIONS IN AUTISM? I GOT TWO SLIDES LEFT. IN MY OPINION, WEED WANT TO GET SERIOUS ABOUT WHAT I CALL, MULTILEVEL ADAPTIVE INTERVENTIONS. I'LL SHOW YOU KIND OF WHAT I MEAN BECAUSE IT'S THE FUTURE, I DON'T REALLY HAVE A CONCRETE EXAMPLE BUT WE NEED TO GET SERIOUS ABOUT THIS. HOW DO WE THINK ABOUT THE ADAPTIVE INTERVENTION CONCEPT WE SHOWED A FEW MINUTES AGO. HOW DO WE THINK ABOUT THAT AT MULTIPLE LEVELS IN THE KIDDO'S LIFE? SO FOR EXAMPLE AT THE LEVEL OF A SCHOOL. AT THE LEVEL OF THE CLASSROOM, AT THE LEVEL OF THE FAMILY. JUST LIKE LARRY SAID, WE ARE MOVING DIFFERENT TREATMENTS USED AT DIFFERENT LEVELS. HOW DO YOU DO THAT ADAPTIVELY? THAT IS THE FUTURE. A SECOND FUTURE IS, HOW DO WE THINK ABOUT ADAPTIVE INTERVENTIONS IN REALTIME? JUST IN TIME ADAPTIVE INTERVENTIONS. SO DELIVERED THROUGH DICES, MOBILE DEVICES. AND THEN MULTIMODAL ADAPTIVE INTERVENTIONS IS WHEN THOSE TWO WORLDS COLLIDE. YOU CAN IMAGINE IN BETWEEN CLINIC VISITS, IN BETWEEN CLINIC VISITS, THE KIDDO MIGHT BE WORKING WITH A DEVICE AT HOME THAT IS IN BETWEEN THE CLINIC VISITS INTERVENING IN REALTIME TO IMPROVE THEIR OUTCOMES AND QUALITY OF LIFE. SO, IN THE MULTILEVEL ADAPTIVE INTERVENTION WORLD, IMAGINE PLAYGROUND INTERVENTIONS, CLASSROOMS AND INDIVIDUAL LEVELS. WE HAVE THEM. WE JUST HAVEN'T PUT THEM TOGETHER INTELLIGENTLY. AND THEN IN THE JUST IN TIME WORLD, WE HAVE THE DEVICES, BELIEVE IT OR NOT, THAT IS OLD NOW. WE KNOW WE CAN SENSOR IN REALTIME BUT THE QUESTION IS, HOW DO WE DELIVER INTERVENTIONS IN REALTIME INTELLIGENTLY AND ADAPTIVELY TO THE NEEDS OF THE KIDDO OR THEIR FAMILY? THANK YOU VERY MUCH FOR YOUR TIME TODAY. >>CONNIE KASARI: WOW. I ALWAYS GET EXCITED WHEN YOU TALK AND I WANT TO KEEP LISTENING. BUT, THAT WAS UNDER 7 MINUTES. >>DANIEL ALMIRALL NOW WE CAN KEEP GOING WITH OTHER PEOPLE WHO MIGHT HAVE TO GO A LITTLE LONGER. >>CONNIE KASARI: YES, WE HAVE A LOT OF EXCITING THINGS TODAY. SO NEXT WE HAVE BIRDIE GANZ WHO WILL TALK ABOUT RIGOROUS REPORTING IN SINGLE-CASE EXPERIMENTS ON AAC INTERVENTIONS FOR MINIMALLY VERBAL NON-SPEAKING PEOPLE WITH AUTISM. WE HEARD A LITTLE BIT OF A PUSH YESTERDAY FOR THINKING ABOUT THESE SINGLE CASES. SO I'M REALLY HAPPY YOU'RE HERE TO TELL US ABOUT THIS. >>BIRDIE GANZ: I HAVE 30 SLIDES. I HAVE A STOP WATCH GOING AND I'LL BE LOOKING FOR THE HOOK IF IT'S NECESSARY. THANKS FOR HAVING ME. I'M THRILLED TO BE A PART OF THIS VERY PRESTIGIOUS AND GROUP AND ESPECIALLY THAT YOU HAVE INVITED SO MANY SHAREHOLDERS TO PARTICIPATE. STOW WHAT I'M GOING TO TALK ABOUT TODAY IS THE QUALITY AND EVIDENCE OF THE SINGLE-CASE RESEARCH BASE ON AAC INTERVENTIONS FOR MOSTLY FOR FOLKS WITH AUTISM AND INTELLECTUAL AND DEVELOPMENTAL DISABILITIES AND SOMETIMES I'LL NARROW IN ON JUST AUTISM. THIS IS FUNDED BY THE INSTITUTE OF EDUCATION AND SCIENCES. MY BACKGROUND IS IN SPECIAL EDUCATION SO MOST OF MY FUNDING COMES FROM THE DEPARTMENT OF EDUCATION. SO SINCE I AM TALKING QUICKLY, I DID -- HERE IS A LINK. IF YOU WANT TO TAKE A CLOSER LOOK AT THE SLIDES OR IF I HAVE TO HURRY THROUGH SOME THEN YOU CAN GO THERE. OR THE QR CODE SHOULD TAKE YOU THERE AS WELL. AND I ALSO -- FOR MY OWN PERSONAL WELLNESS, ALL THE PICTURES ARE OF PLACES I REALLY LOVE. SO I MADE THE CLEAN VERSION SO IT WILL BE A LITTLE BIT EASIER TO READ IF YOU'RE HAVING DIFFICULTY READING. SO, AS OTHER PEOPLE HAVE MENTIONED NONE OF THIS WORK CAN BE DONE ALONE. AND THIS IS A GROUP OF, A LARGE GROUP OF PEOPLE WHO CONTRIBUTED TO THIS META-ANALYSIS AND SYSTEMATIC REVIEW AND I WANT TO ESPECIALLY THANK JAMES. ALL THE BEAUTIFUL FIGURES AND THINGS THAT I'LL SHARE -- I'M ALREADY TWO MINUTES IN. OKAY, LET'S GO. OKAY. SO THIS JUST VERY BRIEFLY IS -- I'M NOT GOING TO TALK TOO MUCH ABOUT METHODOLOGY BECAUSE OF TIME. BUT THIS IS BASICALLY WHAT WE DID AS FAR AS NARROWING DOWN TO THE SINGLE CASE EXPERIMENTS THAT WERE INCLUDED IN THIS PROJECT. SO I'M GOING TALK ABOUT FOR WHOM -- FROM THIS LITERATURE WHAT IS THE SINGLE CASE LITERATURE BASE SAY ABOUT FOR WHOM AAZ EFFECTIVE AND I'LL TALK ABOUT WHAT DO WE NEED TO DO IN THE FUTURE TO MAKE IT EASIER FOR MEHTA ANALYSTS LIKE ME TO SYNTHESIZE THIS LITERATURE AND I SHOULD ALSO SAY THAT I AM A SINGLE CASE RESEARCHER SO, I HOPE NOBODY TAKES ANY OF THIS NEGATIVELY. I'M ALSO CRITICIZING MY OWN WORK AS WELL. SO AS SOME FOLKS TALKED ABOUT YESTERDAY, WE HAVE A REAL LACK OF DIVERSITY IN THIS RESEARCH BASE. WHEN WE LOOKED MORE CLOSELY, FOR THE MOST PART, THEY DID NOT SPECIFY WHAT THE RACE WAS OF THE PARTICIPANTS IN THE STUDIES. WHEN THEY DID, THEY WERE MOSTLY WHITE PARTICIPANTS. THEY DIDN'T SPECIFY THE ETHNICITY, NOT REPORTED VERY OFTEN. A VERY SMALL PROPORTION WERE FROM LATINX BACKGROUNDS AND THE STUDIES DON'T OFTEN REPORT HOME LANGUAGE. WHEN THEY DO, IT'S USUALLY ENGLISH OR STUDIES THAT WERE PUBLISHED IN ENGLISH-DOMINANT SETTINGS. SO THIS IS A REAL PROBLEM. THIS IS JUST ALSO A LITTLE BIT MORE DETAILED OVERVIEW OF WHO WAS INCLUDED IN THESE STUDIES THAT WE'RE REPORTING ON. MOST OF THE PARTICIPANTS HAD AUTISM OR AUTISM AND INTELLECTUAL DISABILITY. AS YOU CAN SEE, THE AGE RANGES OF THE PARTICIPANTS, IT WAS MOSTLY UNDER 10. SO WE HAD A REAL GAP IN THE LITERATURE PERTAINING IN THE SINGLE CASE LITERATURE FOR SURE, PERTAINING TO ADOLESCENTS AND ALSO TO ADULTS. LET ME GO AHEAD AND MOVE FORWARD. ONE THING I CAN SAY OVERALL IS THAT AAC INTERVENTIONS ARE EFFECTIVE ACROSS AGES REGARDLESS OF WHETHER OR NOT SOMEBODY HAD SYMBOLIC LANGUAGE TO BEGIN WITH. THESE TWO EFFECT SIZES, TO YOU AND LAW OF RESPONSE RATIO. -- TAU -- THE DOTS OF INDIVIDUAL SPECK SIZES SO IT SHOWS THE DISTRIBUTION OF THE EFFECT SIZES ACROSS THE STUDIES AND ACROSS AGES. YOU CAN SEE THAT THE EFFECTS WERE PRETTY -- THE AVERAGE EFFECTS WERE PRETTY STEADY ACROSS-THE-BOARD. YOU CAN ALSO SEE HOW HETEROGENOUS THESE DATA ARE, WHICH SPEAKS TO THE NEED TO VERY MUCH INDIVIDUALIZE AAC INTERVENTIONS. I CAN ALSO TELL YOU, OVERALL, WE DO NOT FIND VERY MANY STATISTICALLY SIGNIFICANT DIFFERENCES WHEN WE WERE LOOKING OR TRYING TO MAKE COMPARISONS ACROSS GROUPS. SO LIKE FOR EXAMPLE, WHEN WE WERE LOOKING AT WHAT COMMUNICATION MODE DID THEY USE PRIOR? DID THE PARTICIPANTS USE PRIOR TO INTERVENTION AND WHAT WERE THE EFFECTS OF THE INTERVENTION? WE FOUND NO SIGNIFICANT DIFFERENCES. WE CAN'T SAY LIKE ONE OF THESE TYPES OF COMMUNICATION IS GOING TO HAVE BETTER EFFECTS OVER ALL. THERE WERE SLIGHTLY, YOU KNOW, HIGHER OUTCOMES FOR PARTICIPANTS WHO HAD SOME SYMBOLIC LANGUAGE GOING IN. SO IF THEY USED LOW-TECH AAC OR THE HIGH-TECH AAC OR MANUAL SIGN LANGUAGE. IN MOST CASES THEY HAD BETTER EFFECTS BUT NOT STATISTICALLY BETTER EFFECTS THAN FOLKS WHO DIDN'T USE SYMBOLIC LANGUAGE AT THE OUTSET. SO, AS FAR AS IMPROVING REPORTING RELATED TO PARTICIPANT TRAITS, OBVIOUSLY WE NEED, WE DESPERATELY NEED MORE DIVERSE PARTICIPANTS TO BE IN THESE STUDIES AND WE NEED CULTURALLY AND LINGUISTIC RESPONSIVE APPROACHES. THIS IS -- WE VERY MUCH ARE NOT REFLECTING THE POPULATION OF THE U.S. OR GLOBALLY FOR THAT MATTER. WE ALSO NEED BETTER DESCRIPTIONS OF THE PARTICIPANTS AND THEIR PRIOR SKILLS. WE DON'T REALLY HAVE A GOOD -- AND OF THEIR ASSESSMENTS. THERE IS NOT VERY MUCH CONSISTENCY ACROSS ASSESSMENTS, ACROSS THE STUDIES. WHICH MAKES IT VERY HARD, AGAIN TO, SYNTHESIZE THIS LITERATURE. ALSO AS PEOPLE WERE TALKING ABOUT YESTERDAY, A LOT, WHICH I REALLY APPRECIATE, WE NEED MORE RESEARCH THAT INVOLVES SHAREHOLDERS AND DECISION-MAKING AT ALL STAGES AND I'M THRILLED TO HEAR A LITTLE BIT YESTERDAY ABOUT SOME FOLKS WHO ARE STARTING TO DEVELOP GUIDANCE FOR RESEARCHES ON HOW TO DO THIS. I FEEL LIKE I'M AT A LOSS AND IT WOULD BE HELPFUL TO HAVE ORGANIZATIONS TO HELP IDENTIFY AUTISTIC RESEARCHERS OR COLLABORATORS. SO NOW I'M GOING TO TALK ABOUT UNDER WHAT INSTRUCTIONAL PRACTICES AND CONTEXT? SO INSTRUCTIONAL SET ACCIDENT, WHEN WE LOOKED AT WHERE THESE STUDIES WERE IMPLEMENTED, WE FOUND THAT MOSTLY THEY WERE IMPLEMENTED IN CLASSROOMS AND CLINICS. HOMES WERE THE LEAST-COMMON SETTING. BUT, THERE WEREN'T STATISTICALLY SIGNIFICANT DIFFERENCES IN OUTCOMES COMPARING ACROSS SETTINGS, WHICH TO ME IS VERY HOPEFUL BECAUSE THAT MEANS WE SHOULD AND CAN MOVE MORE TOWARDS MORE NATURAL SETTINGS AS WELL AS MULTIPLE SETTINGS TO IMPROVE GENERALIZATION. SORRY I'M HAVING TO GO SO FAST. TIME FLIES VERY QUICKLY. WE ALSO FOUND THAT STUDIES USED A RANGE OF TEACHING STIMULI AND INSTRUCTIONAL STRATEGIES BUT THEY WEREN'T A WHOLE LOT OF STATISTICALLY SIGNIFICANT DIFFERENCES, WITH A COUPLE OF EXCEPTIONS. MODELING ACT YIELD FOR TAU, MODELING ACTUALLY WHEN IT WAS USED, THEY WERE LOWER EFFECTS THAN WHEN IT WASN'T. NOT SURE EXACTLY WHY THIS IS AND IT MAY NOT WORK OUT IF -- WE MAY NOT SEE THE SAME EFFECTS IF WE HAD BROKEN IT DOWN MORE BY POPULATIONS. PHYSICAL PROMPTS WHEN THAT WERE USED HAD AYER EFFECTS. WHICH MAKES SENSE FROM THE STANDPOINT OF A LOT OF AAC AND UNAIDED AAC PARTICIPANTS WOULD BENEFIT FROM PHYSICAL PROMPTING IN EARLY STAGES. SO WHAT INFORMATION TWO WE NEED? MORE IMPLEMENTATION AND LESS RIGID AND MORE NATURAL CONTEXT WITH COMMUNICATION PARTNERS, THE NATURAL PARTNERS IN THE SETTINGS. IN NATURAL SETTINGS AND NOT PULLED ASIDE INTO A SPECIAL CLINIC ROOM. AND WITH NATURAL MATERIALS PRESENT IN THEIR ENVIRONMENT. AND FINALLY FOR WHAT TARGETED OUTCOMES, I'M GOING SKIP AHEAD TO WHAT THE GAPS ARE AND WHAT WE NEED TO CONCENTRATE ON. SO, LONG TERM, WE IN SINGLE CASE, WE TEND TO HAVE MAINTENANCE DATA WE TEND TO TAKE AT A FEW WEEKS AFTER THE END OF THE INTERVENTION BUT THAT'S NOT REALLY TELLING US VERY MUCH ABOUT LONG TERM. WE NEED MORE RESEARCH ON MULTIMODAL COMMUNICATION USING ALL DIFFERENT KINDS OF COMMUNICATION. THE OBJECT IS NOT TO GET SOMEBODY TO USE THIS AAC DEVICE. IT'S TO HELP THEM COMMUNICATE FLUENTLY AND EASILY AND GET THEIR NEEDS ACROSS. AND THEN OF COURSE MATCHING COMMUNICATION MODES TO PARTICIPANTS. AND I THINK I'M ABOUT OUT OF TIME. BUT ONE WORD FOR REPLICATION AND FOR OPEN SCIENCE. I WELCOME COLLABORATIONS. THERE IS AGAIN THE LINK TO MY HANDOUTS IF YOU WANT TO GET TO WHAT I WAS ABLE -- WASN'T ABLE TO GET TO. >>CONNIE KASARI: WITHIN TIME, THANK YOU, BIRDIE THAT WAS GREAT. SO WE HAVE A VERY DIVERSE SET OF TALKS THIS MORNING. SO NOW WE'LL HAVE SOME COMMENTARY AND WE ARE FORTUNATE TO HAVE STEPHEN CAMARATA HERE WHO WILL START US OFF. >>STEPHEN CAMARATA: THANK YOU VERY MUCH. ALL RIGHT, LET'S SEE. CAN EVERYBODY SEE MY SCREEN? THAT SLIDE IS VERY APPROPRIATE. SO, WHAT AN AMAZINGLY TALENTED GROUP OF RESEARCHERS. THEY WENT SO THROUGH QUICKLY. IT'S KIND OF UNDERESTIMATE JUST THE TALENT AND ALL THE EXPERTISE THAT WENT INTO THAT. A COUPLE OF HIGHLIGHTS. I'M NOT THE STAR OF THE SHOW HERE. I JUST WANT TO MAKE SOME HIGH POINTS. SO I'M VUUMZ PAYING ME WHICH I LOVE. NIH AND IE. AND DEPARTMENT OF EDUCATION SUPPORT MY RESEARCH. I ALSO GET A SMALL AMOUNT OF ROYALTIES FROM AN ARTICULATION TESTS WE DEVELOPED FROM DICK WOOD COCK AND I HAVE SOME BOOKS AND GET? ROYALTIES FROM THOSE. I WANT TO ECHO ONE THING. IT'S VERY FOUNDATIONAL AND IT HAS COME UP AGAIN AND AGAIN. WHO ARE WE TALKING ABOUT? WE PUBLISHED A DESCRIPTION OF NON VERBAL AND MINIMALLY VERBAL CHILDREN IN A PAPER LAST YEAR, TWO YEARS AGO AND WHAT WE FOUND WAS THAT THERE IS A LOT OF VARIATION IN WHO IS INCLUDED IN THESE STUDIES. I THINK THE FIRST THING IS, IF WE ARE GOING TO GET, MAKE PROGRESS IN RESEARCH, WE HAVE GOT TO HAVE GOOD DETAILED PHENOTYPING. WE HEARD THAT FROM THE PREVIOUS PRESENTATION WHICH WAS OUTSTANDING. I WISH I COULD GO THROUGH THE DATA SHE PRESENTED IN DETAIL. THAT WAS PHENOMENAL IT'S REALLY CRUCIAL AND I THINK WE WERE SHOWED THAT DESIGN IS REALLY IMPORTANT IN THAT THE ONLY WAY WE WILL MAKE PROGRESS IN THIS DISCOVERY SPACE IS IF WE USE THE RIGHT DESIGN AND THE RIGHT TOOLS. SO, CLEARLY ONE OF THE WONDERFUL THINGS THAT I LOVED ABOUT DR. LARRY SCAHILL'S PRESENTATION, WE HAVE ENOUGH STUDIES TO SAY THAT THIS IS THE WAY TO GO, COMBINATION. I HAVE BEEN SAYING THAT BUT NOW IT'S GREAT BECAUSE NOW I HAVE EVIDENCE AND THE STUDIES THAT CONTRIBUTE TO THAT. DR. DANIEL ALMIRALL POINTS OUT WHEN YOU HAVE A INDIVIDUAL, THEY WILL HAVE A UNIQUE SET OF NEEDS. THESE KIND OF DESIGNS WHERE YOU CAN ADAPT THE TREATMENT IN REALTIME IF YOU WILL, AS YOU LOOK AT RESPONSE TO TREATMENT, WILL BE VERY HELPFUL AND THAT'S A VERY, VERY IMPORTANT CONCEPT TO TAKE WITH US. THE DIFFERENT TOOLS HAVE DIFFERENT STRENGTHS AND WEAKNESSES. WE SHOULDN'T BE ARGUING ABOUT X DESIGN OR Y DESIGN IS BETTER OVERALL. WHAT IT SHOULD BE IS, THESE ARE TOOLS AND WHAT WE SAW IN THIS PRESENTATION IS 3 VERY DIFFERENT IDEAS THAT ARE ALL FOLK YOU USING TOGETHER ON A PARTICULAR QUESTION. -- FOCUSING -- THAT IS HELPING PEOPLE WHO ARE NON VERBAL AND MINIMALLY VERBAL PEOPLE WITH AUTISM TO COMMUNICATE. ALL THESE THINGS NEED TO BE IN OUR TOOLKIT. I DO WANT TO HIGHLIGHT SOMETHING THAT CAME UP YESTERDAY AND I ADDED THIS SLIDE AS PEOPLE WERE TALKING. IN OUR REVIEW, WE FOUND THAT PEOPLE THAT ARE LIKE USING AFRAID SPEECH OR LARGER COMMUNICATIONS ARE INCLUDED SOMETIMES UNDER THE DESCRIPTIONS OF MINIMALLY VERBAL. SO WE REALLY NEED TO BE FOCUSING ON THE MINIMALLY VERBAL PEOPLE IN A BIG WAY. NOT TO SHORT CHANGE THE OTHER COMMUNICATION NEEDS OF PEOPLE ON THE SPECTRUM. WE WANT TO SERVE EVERYBODY. BUT IT'S REALLY CRUCIAL THAT WE FOCUS ON MINIMALLY VERBAL PEOPLE AS WE GO FORWARD BECAUSE THESE ARE THE PEOPLE THAT HAVE THE MOST -- HIGHSEST COMMUNICATION NEEDS, SUPPORT NEEDS AND SO ON. WE KNOW FROM BEHAVIOR ANALYSIS THAT LARRY SHOWED FOR CROSS POLLENNIZATION, COMMUNICATION IS SUCH A CENTRAL PART AND IF THERE IS ONE THING THAT PARENTS WOULD SAY TO ME, IF I COULD GET MY AUTISTIC CHILD TO COMMUNICATE, THAT WOULD BE THE ONE THING I COULD DO. SO WE REALLY WANT TO FOCUS ON THIS. THESE ARE NOT PEOPLE USING AFRAID SPEECH. AND IT WON'T BE APPLICABLE AND THAT'S ANOTHER IMPORTANT THING. AS WE LEARNED YESTERDAY AND WE HEARD FROM A LOT OF OUR STAKEHOLDERS, IT'S IMPORTANT WE INCLUDE QUALITATIVE DESIGNS. WE NEED TO HAVE AS PART OF THE FEED BACK LOOP WE DO AS RESEARCHERS. QUALITATIVE DESIGNS ARE THE MOST VULNERABLE TO BIAS SO WE HAVE TO BE CAREFUL. THE ON THE OTHER HAND THEY ARE EXCELLENT. AND I CAN POINT TO YOU MANY, MANY QUALITATIVE DESIGNS THAT LAID THE GROUNDWORK FOR FUTURE STUDIES THAT REALLY VALIDATED THE ORIGINAL RUBRICS. SO WE DEFINITELY NEED TO BE THOUGHTFUL AND MOVAL ABOUT INCLUDING THESE AND THAT'S ALL PART OF THE STAKEHOLDER DISCUSSION AS WELL. IT'S IMPORTANT WE THINK ABOUT, AND YOUR POINT IN BROADER OUTCOMES. I THOUGHT IT WAS REALLY INTERESTING TO HEAR THAT OKAY, IF WE JUST PROVIDE A DRUG OR PROVIDE OXYTOCIN OR WHATEVER IT IS, THAT DOESN'T NECESSARILY CHANGE THE BEHAVIOR. ONE OF MY STUDENTS CALLED AN ANCIENT NATURAL 1991, JOHN AND I PUBLISHED A STUDY SHOWING THAT IF YOU TEACH AUGMENTIVE COMMUNICATION, JUST USE THE DEVICE, IT DOESN'T GENERALIZE. AND THEN IF YOU WANT TO USE -- PEOPLE USE IN A SOCIAL WAY, YOU HAVE TO TARGET SOCIALIZATION. SO I'M REALLY HAPPY TO HEAR THAT THAT'S NOT ONLY TRUE FOR AUGMENTIVE BUT FOR EVERYTHING. SO WE DO SOMETIMES HAVE TO BUILD ATTITUDE FOR SPEECH PRODUCTION LIKE ARTICULATION OR HOW TO ACTIVATE AND SCAN A DEVICE. WE HEARD THAT FROM JANICE YESTERDAY. I HEARD THAT SHE WAS THINKING ABOUT HOW CAN WE REALLY GET THIS TO GENERALIZE. SO WE REALLY WANT TO THINK ABOUT OUR SHORT TERM NEAR POINT AND HOW THOSE FEED INTO THE BROADER OUTCOMES. RECENT PAPER SAID THAT IT'S REALLY IMPORTANT WE ALIGN OUR SHORT-TERM GOALS WITH LONG-TERM GOALS BECAUSE THE OUTCOMES AREN'T AS GOOD AS WE'D LIKE BECAUSE PEOPLE ARE GOING DAY-TO-DAY, MONTH-TO-MONTH, TRYING TO ALIGN WITH SHORT TERM THINGS BUT NOT ALIGNING THEM WITH WIDER GOALS. THE LAST THING I WANT TO LEAVE YOU WITH IS, WE HAVE TO REALLY THINK ABOUT ETHICAL RESEARCH AND WE HEARD ABOUT THE LACK OF DIVERSE PERSPECTIVES AND INCLUSION. CLEARLY DIFFERENT POPULATIONS, HOW DO THEY REACT TO DIFFERENT KINDS OF PEOPLE AND DIFFERENT KINDS OF INTERVENTION? WHAT IS THE ROLE OF PARENTS AND THESE THINGS NEED TO BE STUDIED AND INCLUDED. THE OTHER THING THAT REALLY CAUGHT MY -- REALLY IMPORTANT TO ME IS THE NARRATIVE FROM OUR FIRST SPEAKER WHO IS AN AAC USER AND MENTIONED TRAUMA FROM THE TREATMENT. WE PUBLISHED A SERIES OF STUDIES GOING BACK 25 YEARS SHOWING THAT DIRECT PROMPTING AND STRONG PROMPTING OR FORCED PROMPTING MAY NOT NECESSARILY -- THAT IS SOMETHING WE NEED TO THINK ABOUT. THERE MAY BE TIMES WHEN IT IS NEEDED BUT THERE ARE TIMES WE WANTED TO USE THAT JUDICIOUSLY AND IT'S IMPORTANT TO THINK ABOUT THAT. THIS IS THE FIRST SLIDE THAT CAME UP. WE ARE ALL ON THE SAME TEAM. I WORRY THAT RIGHT NOW THERE IS A LOT OF CONVERSATIONS ABOUT WHO SPEAKS FOR PEOPLE AND WHAT STAKEHOLDERS ARE. WE HAVE TO RESPECT AUTONOMY AND ACCEPTANCE BUT THERE IS ALSO A RIGHT TO COMMUNICATION AND WE HAVE TO HAVE AN ONGOING DIALOGUE BECAUSE I REALLY WORRY THAT WE ARE GOING TO BECOME FRACTIONATED. HONESTLY, I THINK ALL OF US HERE, AND THE DEDICATION AND JUST ALL THE THINGS I HAVE HEARD FROM EVERYBODY, WE ALL WANT TO BE RESPECTFUL AND WE ARE ALL WORKING TOGETHER AND HAVE DIFFERENT PERSPECTIVES. WE WANT FEEDBACK TO DO BETTER BUT I DON'T WANT THIS TO FRACTIONATE. I REALLY WORRY ABOUT THAT THAT THE POINT. FINALLY, I WANT TO THROW OUT A COUPLE OF DESIGN THINGS FOR THE FUTURE. IF YOU'RE A CANCER PATIENT HERE AT VANDERBILT, YOU'RE PUT INTO A NATIONAL DATABASE. AND I THINK THE ONLY WAY FORWARD NOW WE HAVE BIG DATA -- AND I'M SORRY, I MEAN I'M NOT BENEFITING AT ALL BUT I REALLY THINK THAT THIS HAS TO BE ACROSS INSTITUTE INITIATIVE WHERE ALL MINIMALLY VERBAL PEOPLE ARE ENROLLED IN A NATIONAL DATABASE AND WE ARE COLLECTING INFORMATION AND MOVING FORWARD. I RESONATED TO JOHN ROBINSON'S TECHNOLOGY. I LOVED TO SEE COUPING WITH BRAIN WAVES. THERE IS A TREATMENT PRAGMATIC CLINICAL TRIALS WHERE THEY CAPTURE PARTIAL DATA. IT'S NOT STRONG EVIDENCE BASE BUT IT IS DATA NONETHELESS AND IF YOU ANALYZE IT PROPERLY. YOU'RE COLLECTING DATA FROM ALL THE PATIENTS IN THE CLINIC AND YOU'RE HARNESSING THAT AND USING BIG DATA. AND THEN I THINK IT'S REALLY IMPORTANT. ALL OF US ARE WORKING TOGETHER BUT NOT REALLY IN A PLANNED WAY. AND I JUST SEE THIS NEED. I MEAN, CLEARLY HELEN AND CONNIE HAVE BEEN AT THE FOREFRONT OF THIS. BUT WE NEED TO HAVE STRATEGIC PLANNING. I'M NOT A TOP-DOWN KIND OF PERSON IN ANY WAY. BUT I REALLY THINK WE NEED TO ALIGN OUR GOALS AND HAVE PRIORITIES AND IN ORDER FOR US TO MAKE PROGRESS, I THINK WE HAVE TO BE MORE MINDFUL AND SYSTEMATIC ABOUT IT. THANK YOU VERY MUCH FOR YOUR ATTENTION. >>CONNIE KASARI: GRATED. UNDER TIME AS WELL AND WHAT A GREAT COMMENT. WE ARE ALL ON THE SAME TEAM. >>STEPHEN CAMARATA: WE DON'T WANT TO FORGET IT. I HAVE SEEN FIELDS FRACTIONATE AND IT STOPS PROGRESS. AND WE HAVE TO. WE ALL CARE SO DEEPLY HERE. IT'S CLEAR. >>CONNIE KASARI: ABSOLUTELY. THANK YOU. NOW WE ARE GOING TO HAVE COMMENTARY BY ALEUTSULOUS, A PARENT AND A SOCIAL SCIENTIST -- A ELUDES ELUDES. WELCOME. WE ARE LOOKING FORWARD TO YOUR COMMENTS -- AMY LUTZ. DO YOU WANT TO STOP SHARING SCREEN, STEPHEN. >>I'M TRYING TO FIND MY ZOOM. IT'S IN A CORNER AS USUAL. I'M GOING TO BAILOUT AND THEN COME BACK. >>JUDITH COOPER: CAN I ASK THAT DANIELLE AND BIRDIE STOP SHARING UNTIL WE GET TO THE DISCUSSION PERIOD. THANKS. HE LEFT AND LEFT HIS SLIDES UP. THANK YOU. >>I CLOSED IT. >>GOT IT. HI, AMY. >>AMY LUTZ: THANK YOU FOR INVITING ME TO PARTICIPATE. I HEARD JOHN MENTION MEETING ME AND MY 24-YEAR-OLDY AUTISTIC SON, JONAH. AND I DON'T KNOW IF JOHN IS HERE TODAY BUT I JUST WAS VERY TOUCHED THAT MEETING THAT SO IMPACTFUL TO HIM. IT WAS VERY IMPACTFUL TO US. AND I THINK HIS CONCLUSION THAT JUST BECAUSE JOHN SHARES A DIAGNOSIS WITH MY SON JONAH, DOESN'T MEAN THAT HE HAS ANY PARTICULAR INSIGHT INTO WHAT JONAH NEEDS, IS REALLY APT AND NEEDS TO BE FOREFRONT OF THESE CONVERSATIONS. SO I DON'T HAVE ANY SLIDES AND I'M SORRY, I MISSED MOST OF THE TALK. I HAD TO KIND OF LEAVE VERY SHORTLY AFTER JOHN'S TALK YESTERDAY BECAUSE I TEACH. AND PEN SCHEDULED ONE OF MY CLASSES DURING THIS MEETING SO I COULDN'T ABANDON MY STUDENTS. SO I APOLOGIZE IF WHAT I SAY IS NOT CONNECTED TO WHAT HAPPENED YESTERDAY OR PERHAPS ONE OF THESE ISSUES WAS ADDRESSED YESTERDAY AND PLEASE CORRECT ME DURING THE Q&A. TO ME, THERE IS TWO MAIN ISSUES FOR, THAT IS IMPORTANT TO ME AS THE MOTHER OF A SERIOUSLY AUTISTIC ADULT NOW BUT ALSO I'M VICE PRESIDENT OF NATIONAL COUNCIL ON SEVERE AUTISM. SO WE WORK WITH SO MANY FAMILIES WHO HAVE SERIOUSLY AUTISTIC CHILDREN AT ALL AGES FROM PRETTY YOUNG BUT NOT SUPER YOUNG BECAUSE USUALLY CHILDREN DON'T REALLY OR PARENTS DON'T CONSIDER THEIR CHILDREN TO BE QUITE SEVERE UNTIL THEY ARE A LITTLE BIT OLDER AND THEIR TRAJECTORIES BECOME MORE FIXED. BUT FROM WHAT WE ARE HEARING FROM OUR FAMILIES AND ALSO -- THIS IS JUST ALSO MY PERFORM PERSPECTIVE AND MY REACTION TO LISTENING TO THESE CONVERSATIONS ABOUT MINIMALLY VERBAL, IS I'M GOING TO STEAL A PHRASE ABOUT THE NEED FOR GOOD PHENOTYPING AND ABOUT TALKING ABOUT DIFFERENT POPULATIONS IN SPECIFIC WAYS. SO I'M HEARING A LOT ABOUT LANGUAGE DEFICITS, MINIMALLY VERBAL INDIVIDUALS. I HAVEN'T HEARD ANYONE REALLY SAY ANYTHING ABOUT THE SIGNIFICANT COGNITIVE IMPAIRMENTS THAT ARE OFTEN ACCOMPANYING OR PRESENT IN INDIVIDUALS THAT HAVE AUTISM AND MINIMALLY VERBAL AND THAT COMPLICATES THE TYPE OF LANGUAGE THAT WE WANT TO HOPE FOR THESE AND HELP THESE INDIVIDUALS ATTAIN. SO, I MEAN MY SON HAS A LOT OF DIFFERENT LANGUAGE MODALITIES. HE HAS A SIGNIFICANT INTELLECTUAL DISABILITY BUT HE ALSO HAS SOME WORDS AND HE WAS HYPERLEXIC SO HE CAN SPELL AND HE CAN TYPE. BUT IN A VERY FUNDAMENTAL WAY. AND THE KIND OF THINGS HE USES HIS LANGUAGE FOR, FOR ASKING FOR THINGS, PRIMARILY. I MEAN THAT WAS HUGELY IMPORTANT FOR HIM TO LEARN PHRASES THAT -- LIKE I NEED HELP. OR FIX THIS. AND I DON'T THINK HE NECESSARILY UNDERSTANDS WHAT EVERY WORD MEANS IN THESE PHRASES BUT HE KNOWS BY SAYING THESE THINGS, HE WILL GET ME TO FIX HIS iPAD OR HELP HIM PUT HIS SHOE ON OR SOMETHING. SO THE TYPE OF LANGUAGE -- I THINK WE NEED TO DISTINGUISH BETWEEN PEOPLE OF SIGNIFICANT COGNITIVE IMPAIRMENT AND THOSE WHO DON'T. IT'S A VERY DIFFERENT LANGUAGE LANDSCAPE FOR THOSE. FOR MY SON, THE PROBLEM IS NOT THAT HE DOESN'T HAVE THE ABILITY TO SPEAK OR WRITE OR COMMUNICATE ADVANCED CONCEPTS. HE JUST DOESN'T HAVE ADVANCED CONCEPTS BECAUSE OF HIS SIGNIFICANT COGNITIVE IMPAIRMENT. OUR LANGUAGE GOALS ARE VERY DIFFERENT. JUST REALLY NEED TO EMPHASIZE THAT YES, WE THE FAMILIES OF MINIMALLY VERBAL INDIVIDUALS AND MINIMALLY VERBAL INDIVIDUALS THEMSELVES, WE NEED NEW INTERVENTIONS. I WAS SO EXCITED -- I HAVE TO SAY THAT DR. A AUTUMN AUTUMN, YOUR EXCITEMENT IS CONTAGIOUS -- DANIEL ALMIRALL, ABOUT THE FUTURE OF ALL THESE DIFFERENT MODALITIES AND COMBINING TREATMENTS AND SEEING SIGNIFICANT IMPACTS. LIKE I WAS LIKE I WISH THEY HAD THIS WHEN MY SON WAS YOUNGER. BUT I THINK AS MUCH AS WE NEED INTERVENTIONS, WE NEED EVIDENCE-BASED INTERVENTIONS. AND I LIKE DR. DANIEL ALMIRALL'S EMPHASIS ON USING RANDOMIZED CLINICAL TRIALS, CONTROLLED EXPERIMENTS FOR EVALUATING TREATMENTS. AND I THINK THIS ABSOLUTELY IS ESSENTIAL. MY SON, HE HAS A PRETTY FRAGILE AGENCY. HE HAS LIMITED CONTROL OVER HIS ENVIRONMENT. AND IT IS ABSOLUTELY ESSENTIAL THAT WE MAKE SURE THAT WHAT HE COMMUNICATES REALLY REFLECTS HIS AGENCY. WE DON'T WANT TO RISK HIJACKING THE AGENCY OF PEOPLE WHO ALREADY HAVE SO LITTLE IMPACT ON THEIR ENVIRONMENT BY GIVING THEM INTERVENTIONS THAT DON'T ACCURATELY REFLECT THEIR VOICE AND THEIR AUTONOMY. SO, I DO WANT TO CORRECT SOMETHING THAT DR. STEPHEN CAMARATA SAID, WHICH IS I AGREE THERE IS A RIGHT TO COMMUNICATE BUT I THINK THAT THAT NEEDS TO BE MODIFIED TO A RIGHT TO INDEPENDENT COMMUNICATION. WHATEVER THAT LOOKS LIKE. IF IT MEANS -- WHEN JONAH WAS A LITTLE KID, HE LEARNED ONE SIGN, MORE. THAT WAS ALL HE HAD. BUT HE USED IT IN A SURPRISINGLY LARGE NUMBER OF CONTEXT. HE USED IT TO ASK FOR THINGS HE HADN'T BEEN GIVEN ANY OF YET. THAT'S WHAT HE USED. NOW HE HAS SOME LANGUAGE. HE ALSO CAN SPELL SOME THINGS. BUT THAT'S INDEPENDENT LANGUAGE. AND I THINK THAT WE REALLY HAVE -- THAT'S A LINE WE HAVE TO, A BRIGHT LINE IN THE SAND THAT WE NEED TO HAVE CONTROLLED STUDIES TO DEMONSTRATE INDEPENDENT LANGUAGE. THANK YOU. Y. >>CONNIE KASARI: THANK YOU, IMPORTANT COMMENTS. NOW WE ARE NOT GOING TO HAVE OPEN DISCUSSION AS JUDITH SAID, WE ARE GOING TO WAIT UNTIL THE END AND MOVE TO MEANINGFUL OUTCOME MEASURES AND HELEN, IT'S YOURS. >>HELEN TAGER-FLUSBERG: THANK YOU CONNIE AND THANK YOU TO EVERYONE IN THE PREVIOUS SESSION. SO IMPORTANT TO THINK ABOUT RESEARCH DESIGN AND WHAT OUR METHODS ARE. BUT THE TOPIC THAT HAS COME UP YESTERDAY AND THE TOPIC THAT WAS ALLUDED TO IN THE PREVIOUS SESSION IS THE ISSUE OF MEASURING MEANINGFUL OUTCOMES. AND I DON'T THINK THIS TOPIC WILL AGREE ON COMPLETELY THIS AFTERNOON. BUT I THINK IT'S ABSOLUTELY CRUCIAL AND OUR FIRST SPEAKER THIS AFTERNOON, CATHY LORD WILL TALK ABOUT RESEARCH PERSPECTIVES ON DEVELOPING MEANINGFUL OUTCOME MEASURES. >>CATHY LORD: I'M TRYING TO SHARE MY SCREEN. THERE WE GO. I ALSO WANT TO JUST THANK EVERYBODY FOR INCLUDING ME IN THIS. AND I'M SO IMPRESSED THAT PEOPLE HAVE WORKED TOGETHER FROM A VARIETY OF DIFFERENT PERSPECTIVES. I'M GOING TO TRY TO GIVE EXAMPLES FROM SOME OF THE WORK I HAVE BEEN INVOLVED IN OR PERIPHERALLY INVOLVED IN, AND CONNIE, YOU'LL SEE SOME OF THE WORK I JUST VIEWED FROM ACROSS THE HALLWAY. I DO HAVE SOME CONFLICTS OF INTEREST BUT I'M NOT TRYING TO SELL YOU ANYTHING AND TODAY NOTHING I TALK ABOUT IS FOR SALE. SO HOPEFULLY THAT WILL HELP. I'M REALLY TRYING TO MAKE TWO POINTS HERE TODAY. AND I HAD A THIRD POINT WHICH IS THE INVOLVEMENT OF PARTICIPANTS AND STAKEHOLDERS BUT I THINK OTHER PEOPLE HAVE TALKED ABOUT THAT A LOT. SO THE FIRST ONE IS, WE NEED TO MAKE OBSERVATIONS. WE NEED TO SEE WHAT IS HAPPENING. AND I KNOW THAT THIS IS HARD FOR SOME STAKEHOLDERS. I DEFINITELY HAD FEEDBACK THAT I DON'T WANT TO DOD THIS AND I DON'T WANT TO BE WATCHED. I THINK WE HAVE TO FIGURE OUT HOW TO DO THIS WITH RESPECT AND COMFORT. BUT I DO THINK WE NEED TO SEE WHAT IS HAPPENING WHEN PEOPLE COMMUNICATE. AND WHAT WORKS. I THINK REALISTICALLY, WE ALSO HAVE TO FIGURE OUT WHAT IS AT LEAST IN TERMS OF THE CLINICAL ESTABLISHMENT TO, DO THIS OVER SHORT TIMES THAT GIVE US RELIABLE INFORMATION. AND BECAUSE WE CAN'T JUST WATCH PEOPLE FOR HOURS AND HOURS AND HOURS IF WE HAVE TO BILL THEM, WHICH IS THE REALITY OF AMERICAN MEDICINE. I THINK WE HAVE TO LINK THESE FINDINGS TO MEANINGFUL MEASURES OF CHANGE THAT GO BACK TO LIKE SEVERAL PEOPLE HAVE REFERRED TO, I THINK STEPHEN, ABOUT THE IDEA OF WHAT ARE OUR REAL GOALS? AND WE HAVE TO HAVE MEASUREMENTS THAT WE CAN DO ACROSS CONTEXT AND PARTNERS. BECAUSE COMMUNICATION IS TIED TO CONTEXT T DOESN'T OCCUR IN THE SKY. IT OCCURS BETWEEN PEOPLE AND ABOUT THINGS. AND THOSE THINGS ARE GOING TO BE DIFFERENT. AND IDEALLY IF WE COULD HAVE MEASUREMENTS THAT WERE CONSTANT ACROSS STUDIES, NOT THAT THEY ARE THE ONLY THING WE DO BY ANY MEANS. IT WOULD HELP US MAKE THE HETEROGENEITY THAT IS OBVIOUS AND FOR EXAMPLE DANNY TALKED ABOUT MORE COMPREHENSIBLE. WE NEED TO RECOGNIZE WE ARE TALKING ABOUT DEVELOPMENT HERE. I AM SO CURIOUS ABOUT HOW DO PEOPLE WHO MOVE FROM HAVING MINIMAL SPOKEN LANGUAGE TO BEING ABLE TO COMMUNICATE MORE FLUENTLY IN DIFFERENT FORMS? HOW DOES THAT HAPPEN? AND WE NEED TO LEARN MORE ABOUT THAT PROCESS, NOT JUST YES OR NO. WE ALSO NEED TO THINK ABOUT NOT JUST ORAL SPEECH BUT USE OF DEVICES AND ALSO THINGS LIKE GESTURES AND VOCALIZATIONS. SO I'M JUST GOING TO USE EXAMPLES. THIS IS CONNIE'S. SO THIS IS THE DATA ABOUT THE SPEECH, EFFECT OF SPEECH GENERATING DEVICES. YOU'LL SEE THE LINE HERE, THE ONE THAT GOES WAY UP. THOSE ARE KIDS IN HER STUDY. AND THE FACT THAT THEY USE MORE SPONTANEOUS UTTERANCES THAN KIDS WHO DIDN'T HAVE SPEECH GENERATION. THIS IS THE SAME STUDY THAT DANNY MENTIONED. BUT I THINK WHAT IS REALLY IMPORTANT HERE IS THAT WHEN MY POSTDOC AND CONNIE LOOKED CAREFULLY AT THESE DATE ADD. OF THE LANGUAGE, INCLUDING THE SPEECH GENERATING DEVICE, THAT THE KIDS USED DURING THIS, ONLY 10% OF IT WAS ACTUALLY USING THE DEVICE. SO WHAT WAS HAPPENING WAS THAT THE KIDS WHO WERE IN THE CONDITION WHO HAD ACCESS TO SPEECH GENERATING DEVICE, WERE TALKING MORE. NOW THAT IS NOT WHAT I WOULD HAVE EXPECTED AT ALL. AND MY POINT IS NOT THAT THIS ALWAYS HAPPENS. BUT THAT WE NEED TO OBSERVE. WE NEED TO THINK ABOUT WHAT WAS HAPPENING. AND IT TURNED OUT THAT KIDS WHO HAD BETTER ATTENTION WERE MORE RESPONSIVE TO THE SPEECH GENERATING DEVICE. AND TALKED MORE. AND I WOULD HAVE PREDICTED THAT THE SPEECH GENERATING DEVICE WOULD HAVE IMPROVED JOIN ATTENTION. BUT THAT IS NOT WHAT HAPPENED HERE. SO MY POINT IS, WE NEED TO STOP AND LOOK AT WHAT IS GOING ON. SO I'M GOING TO GIVE YOU ONE EXAMPLE BUT THIS IS REALLY JUST AN EXAMPLE. WE HAVE BEEN DEVELOPING SOMETHING CALLED THE BOSCC, A STANDARD WAY OF MEASURING SOCIAL COMMUNICATION. IT INVOLVES 12-16 MINUTES OF VIDEOTAPED PLAY FOR YOUNGER KIDS AND THEN THERE ARE MATERIALS, BASICALLY INCLUDING BAR GAMES FOR ADOLESCENTS AND ADULTS. ANYONE CAN GIVE THIS. THE MORE NAIVE THE PLAY PARTNER, THE BETTER. THIS PERSON CAN BE BLIND TO TREATMENT STATUS, WHICH IS SO IMPORTANT BECAUSE THAT, AS BIRDIE SAID, THAT IS NOT NECESSARILY A PART OF WHAT PEOPLE OFTEN DO. AND IT CAN BE CODED BY SOMEBODY ELSE. IT'S VIDEOTAPED. WHO DOESN'T KNOW IF THIS IS BEFORE OR AFTER, IF THE KID IS IN A CONDITION, WHAT THE GOALS OF THE STUDY ARE. NOW WE TOOK AIM DATA AGAIN, THANKS TO CONNIE. SO OF AN INTERVENTION THAT WE WERE PART OF. AND PEOPLE WERE INTERACTING WITH THEIR THERAPISTS AND THEY WERE ALSO DOING A DIFFERENT INTERACTION WITH THEIR PARENTS. AND WE WERE INTERESTED IN INITIALLY WHEN WE TRIED USING THE DATA FROM THE PARENT DATA, NOBODY CHANGED. BUT IN FACT, THE CAREGIVERS, AND THIS IS RELATED TO DANNY -- THEIR 6-WEEK RESPONSES WERE THAT MANY PEOPLE HAD CHANGED. NOT THE CAREGIVERS, THE THERAPISTS. WHAT WE WERE ABLE TO DO IS USE THESE OBSERVATIONAL CODES. AND ON THE LEFT TO CODE WHETHER THE KID CHANGED WITH THE CAREGIVERS, WHICH THEY DID NOT, AND WHETHER THEY CHANGED WITH THE THERAPIST, WHICH THEY DID, PARTICULARLY IN ONE OF THE K. SO AGAIN, MY POINT S WE NEED TO SEE WHAT HAPPENS. WE ALSO CAN TAKE THESE CODES AND WE COULD SHOW THAT FOR EXAMPLE, ON THE LEFT, THE KIDS WERE MORE RESPONSIVE FROM THE START WITH THEIR OWN CAREGIVERS. THAT'S THE ENGAGEMENT. THEY ALSO SHOWED MORE RRBs WERE MORE ACTIVE AND MORE LIKELY TO BE AGGRESSIVE. SO WE HAVE BEEN TRYING TO USE THESE MEASURES WORKING WITH SOPHIE AND A WHOLE SLEW OF OTHER PEOPLE HERE TO LOOK AT INTERVENTIONS. AGAIN, IN MICHIGAN, OUR GROUP WAS ABLE TO PARTICIPATE IN ESDM TRIALS. THESE ARE ALL RANDOMIZED CONTROL TRIALS. ESI AND GAS PER. THESE ARE VERY DIFFERENT INTERVENTIONS. AND I NEED TO REALLY POINT OUT THIS IS JUST A SENSE OF WHEN IT DOES IT WORK? WHAT WE FOUND, AGAIN, USING THESE CODINGS BY SOMEBODY WHO DIDN'T KNOW IF THE KID WAS BEFORE OR AFTER, DIDN'T KNOW WHICH INTERVENTION THEY WERE IN, IS THAT IN ESDM ON THE RIGHT, THE KIDS IN INTERVENTION GOT BETTER MORE THAN THE KIDS WHO WERE NOT IN THE INTERVENTION. AND THIS IS REALLY A GENERALIZATION TRIAL BECAUSE THIS WAS NOT THE GOAL OF THIS STUDY. SO THIS MAKES SOME PEOPLE QUITE NERVOUS. IN ESI USING ONLY OUR DATA BECAUSE AMY COULDN'T EVER GET US HER DATA, WE SAW THE SAME THING. SO SYSTEMATICALLY AND UP AT THE TOP IS, SOCIAL COMMUNICATION, NEXT REPETITIVE LEADERS AND THE NEXT IS THE TOTAL. EVERYBODY CHANGED A LITTLE BIT BUT THE KIDS IN THE INTERVENTION CHANGED MORE. WE DID NOT SEE THIS FOR JASPER BUT JASPER WAS JUST 12 WEEKS AND FAR LESS INTENSE. ONE OF THE THINGS WE WERE ABLE TO DO WAS CODE THE CAREGIVER'S BEHAVIOR. THIS IS AN INSTRUMENT OR CODING SYSTEM FOR THE SAME VIDEO CALLED THE MONSY. IS IT A PARENT CHANGED MORE THAN THE KIDS DID. AND THE PARENTS AS YOU CAN SEE ON THE BOTTOM LEFT IN INTERVENTIONS, CHANGED MORE THAN PARENTS NOT INTERVENTIONS. AND THIS ACTUALLY ACCOUNTED FOR THE CHANGES OF THE KIDS. SO, ONE OF THE THINGS WE CAN TELL, WE CAN LEARN FROM OBSERVING. WE ALSO HAVE BEEN TRYING TO GET AUTOMATIC MEASURES FROM THIS. AND THIS HAS BEEN BACK TO FRED'S COMMENT. HUNDREDS OF THOUSANDS OF DOLLARS LATER. ENGINEERS FROM USC AND GEORGIA TECH. WE HAVE A FEW MEASURES. SO FOR EXAMPLE, WITH OLDER KIDS FROM THESE STUDIES, THE LATENCY TO RESPOND CHANGED. A METHOD OF OUGHTMATICALLY CODING WHETHER THE CHILD IN THE PARENT ARE LOOKING AT THE SAME THING. AND THAT ALSO CHANGES FOR THE LITTLELER KIDS. SO WE ARE NOW, AND I THINK THE WHOLE GROUP OF US, INCLUDING HELEN AND CONNIE AND SOPHIE AND OTHERS, ARE TRYING TO FIGURE OUT IF WE CAN DO THIS BETTER. I THINK JUST TO COME TO A SUMMARY, MOST CHANGES ARE GRADUAL. THERE IS A FEW EUREKA MOMENTS BUT MOST CHANGES ARE GRADUAL. SO WE NEED TO KNOW FOR PEOPLE WHO ARE NON-SPEAKING PEOPLE WHO HAVE COME TO COMMUNICATE WITH DEVICES INDEPENDENTLY, SO BACK TO AMY'S COMMENT. WE NEED TO KNOW HOW DID THIS HAPPEN? MOST CHANGES IN COMMUNICATION ARE AFFECTED BY THE ENVIRONMENT. SO WE NEED TO BE ABLE TO TEST DIFFERENT PARTNERS AND DIFFERENT PLACES. AND THE BEST MEASURE OF CHANGE WILL DEPEND ON WHAT THE INTERVENTION IS. SO THERE ISN'T GOING TO BE ONE THING THAT WORKS FOR EVERYTHING. BUT WE DO WANT TO HAVE SOME STANDARDIZATION. AND TO REMEMBER THAT WE WANT TO COME BACK TO OUR GOALS, WHICH ARE MEANINGFUL CHANGE THAT ALLOWS PEOPLE TO COMMUNICATE. SO THIS WORKED LIKE EVERYBODY ELSE'S IS VERY DEPENDENT ON MY COLLEAGUES AND EVERYBODY ELSE. BUT I JUST WANT TO THANK YOU FOR LISTENING. >>HELEN TAGER-FLUSBERG: THANK YOU VERY MUCH, KATHY. THAT'S A GREAT START TO THIS SESSION ON OUTCOME MEASURES. WE'LL TURN NOW TO VANESSA BAL. VANESSA WILL BE SPEAKING ABOUT EMOTIONAL HEALTH AND WELL-BEING AS AN OUTCOME AND INDICATOR OF INTERVENTION SUCCESS. AND THANK YOU VANESSA. YOU'RE UP AND RUNNING WITH YOUR PRESENTATION AND I'LL HAND THE FLOOR OVER TO YOU. >>VANESSA BAL: THANK YOU VERY MUCH. IT'S REALLY AN HONOR TO HAVE BEEN INVITED TODAY. AND I MY CLIS CLOSURE IS AT THE BOTTOM BUT THE MOST IMPORTANT IS THE THAT I'M A CLINICAL PSYCHOLOGIST. I'M NOT A LANGUAGE RESEARCHER OR A LANGUAGE INTERVENTIONIST. AND SO I THINK MAYBE THAT BIAS WILL COME THROUGH PRETTY CLEARLY IN WHAT I'M GOING TO TALK ABOUT TODAY. SO, I WANTED TO SORT OF TAKE A QUICK SECOND TO REFLECT. THIS IS A PAPER AND CONNIE WAS PART OF THIS IN OUR PRE CONFERENCE IN 2017, FOCUSED ON MEASURING MEANINGFUL OUTCOMES. THIS WAS A BROAD SCOPE ACROSS-THE-BOARD NOT SPECIFIC TO MINIMALLY VERBAL OR NON-SPEAKING INDIVIDUALS. WE HAD A DISCUSSION WITH OVER 200 DIFFERENT STEAK AND SHAREHOLDERS, INCLUDING AUTISTIC PEOPLE, CLINICIANS AND RESEARCHERS. THE THEMES THAT EMERGED ARE THINGS WE REALLY TOUCHED ON IN THE LAST COUPLE OF DAYS. IN PARTICULAR I THINK THIS HIGHLIGHTINGS THAT WE REALLY NEED TO BROADEN THE SCOPE OF WHAT WE ARE MEASURING AS RESEARCHERS. AND SO, AS WE ARE TALKING ABOUT LANGUAGE INTERVENTIONS AND THINKING ABOUT WHAT WE DEFINE AS A MEANINGFUL OUTCOME FROM A LANGUAGE INTERVENTION. AND I WANT TO TAKE A STEP BACK AND THINK ABOUT WHY DO WE REALLY USE LANGUAGE? AGAIN, I'M NOT A LANGUAGE RESEARCHER. I'M A LITTLE SELF CONSCIOUS ABOUT MY CHOICE OF FUNCTION AND HOW SOME OF THE AUDIENCE MEMBERS DEFINE FUNCTIONAL COMMUNICATION. BUT WHAT I MEAN BY THIS IS THAT THERE IS A SPECIFIC -- LANGUAGE IS DESIGNED TO ACCOMPLISH SOMETHING SPECIFIC. AND THIS CAN BE SORT OF SEPARATED FROM THE LARGER PURPOSE. SO THERE IS LOTS OF FUNCTIONS THAT WE TRY TO USE LANGUAGE FOR BUT MUCH OF IT REALLY COMES DOWN TO OUR OWN PERSONAL MOTIVATIONS, WHICH I THINK SORT OF IN A BIGGER PICTURE WAY MAP ON TO EMOTIONAL HEALTH OR WELL-BEING, OR PUT SIMPLY, WHAT MAKES US HAPPY? WHAT MAKES US SON TENT? SO IF WE LOOK AT LANGUAGE INTERVENTIONS OFTEN WE ARE TARGETING THOSE FUNCTIONS. SO AS A RESULT, OUTCOME MEASURES FOCUS ON WHETHER OR NOT THE INTERVENTION IS SUCCESSFUL AND HELPING PEOPLE TO COMMUNICATE FOR THAT PARTICULAR FUNCTION. THERE IS A LOT OF EMPHASIS ON OBJECTIVE NUMERIC OUTCOMES WITH AN ASSUMPTION THAT MORE IS BETTER. THAT MAKES SENSE. WE NEED THOSE SORTS OF METICS AND THAT IS REALLY IMPORTANT. BUT I THINK SOMETIMES WE RUN THE RISK OF MISSING THAT BIGGER PICTURE. SO, WHICH IS WHETHER THE COMMUNICATION IS SERVING THE UNDERLYING PURPOSE. SO THE EXAMPLES THAT GRANT AND JORDYN GAVE US YESTERDAY, HIGHLIGHTED HOW TONE OF THE AUGMENTIVE COMMUNICATION DEVICE DOESN'T NECESSARILY CAPTURE THEIR COMMUNICATIVE INTENT. WHAT IF YOU'RE TRYING TO GET EMOTIONAL SUPPORT BUT YOUR METHOD OF COMMUNICATING DOESN'T CONVEY YOUR PERSONAL EXPERIENCE? IS THE FUNCTION MEANINGFUL? SO SOMEONE MADE REFERENCE YESTERDAY TO MANY INTERVENTIONS FOCUSING ON REQUESTING AND MORE TO LIFE THAN COOKIES. AND WADO WE HAVE IF YOU FOCUSED ON HELPING SOMEONE TO REQUEST SOMETHING SPECIFIC, AND THEN THEY GET OLDER AND THEY CAN GET THE COOKIES FOR THEMSELVES. THEY CAN OPEN THAT BOX. AND SO THEN IS THAT LANGUAGE AND IS THAT SUPPORTED COMMUNICATION STILL SERVING THAT FUNCTION? AND THEN WE HAVE THE EXAMPLES FROM DEN SPEC FROM AMY ABOUT THE WAYS IN WHICH YOU CAN -- IT GOES BEYOND THE NUMBER OF WORDS OR THE NUMBER OF SIGNS YOU HAVE AND REALLY DENISE'S SON WAS ABLE TO FIGURE OUT HOW TO USE BREAD STICKS AND THE BROAD REPERTOIRE DIDN'T HAVE THE SPECIFIC WORD ON THE DEVICE BUT HERE'S ABLE TO FIGURE OUT HOW TO COMMUNICATE WHAT IT WAS HE WANTED. AMY MENTIONED HER SON USING A SINGLE SIGN ACROSS A VARIETY OF DIFFERENT FUNCTIONS. SO MOVING BEYOND HOW MANY DO WE HAVE, HOW OFTEN DO WE USE, BUT DO YOU HAVE IT AT THE POINT THAT YOU REALLY NEED TO COMMUNICATE SOMETHING? AND SO, I THINK I WANT TO BE REALLY CLEAR. I THINK LANGUAGE INTERVENTIONS ARE INHERENT LIE SUPPORTING THE BIGGER PICTURE. THIS ISN'T LIKE A NOVEL IDEA BEING ABLE TO EXPRESS OURSELVES AND OUR NEEDS AND DESIRES, TO BE ABLE TO CONNECT WITH PEOPLE, TO BE ABLE TO REFUSE THOSE CONNECTIONS. THOSE ARE ALL IMPORTANT FACETS TO QUALITY OF LIFE. AND OBVIOUSLY MORE FLUENCY, MORE WORDS, MORE MODALITIES CAN BE REALLY VALUABLE TO ENSURE THAT EVERYONE HAS ACCESS TO THAT. BUT I THINK IF WE LISTEN TO THE STAKEHOLDERS IN OUR ZOOM ROOM, IF WE REALLY BELIEVE THAT THE PURPOSE OF LANGUAGE IS REALLY TO PROMOTE SOME FACET OF OUR WELL-BEING, SHOULDN'T WE BE MEASURING THAT AS AN EXPLICIT OUTCOME, AS AN INDICATOR OF SUCCESS IN OUR INTERVENTIONS BROADLY BUT INCLUDING OUR SPECIFIC LANGUAGE INTERVENTIONS? AND IF WE THINK ABOUT THIS, HOW DOES THE FOCUS ON EMOTION OR WELL-BEING ACTUALLY EXPAND OUR DEFINITIONS OF INTERVENTION RESPONSE, WHAT WE DEFINE AS SUCCESSFUL OUTCOME IN INTERVENTION AND EVEN IN FORM OUR DECISIONS REGARDING WHEN WE MIGHT MOVE TO AN ADAPTIVE DESIGN. SO THINKING ABOUT, HOW EFFECTIVE IS THE COMMUNICATION FOR THE BROADER PURPOSE? WHAT ABOUT THOSE INDIVIDUALS WHO TALKED ABOUT THE BARRIERS TO VARIOUS TYPES OF AAC DEVICES AND WHAT ABOUT THE FLUENCY OR THE COMFORT OR EASE WITH WHICH THEY ARE ABLE TO USE THOSE TO COMMUNICATE. SOMETIMES RELATIVELY SIMPLE NEEDS ARE OF THE UTMOST IMPORTANCE TO THOSE INDIVIDUALS. WE HAVEN'T TALKED TOO MUCH ABOUT THE SATISFACTION OVERALL WITH THE OUTCOME THEY ARE TRYING TO ACHIEVE WITH THE INTERVENTION OR THE MODALITY. DO THEY WANT TO USE AN AAC DEVICE? IS SOMETHING LIKE GHOST YOURS EASIER FOR THEM? THERE WAS A LOT OF -- GESTURES -- DISCUSSION YESTERDAY ABOUT INDUSTRY AND NOTHING MAKES IT IN INDUSTRY UNLESS CUSTOMERS ARE SATISFIED. AND SO I THINK IF WE THINK OF IT FROM THAT ANGLE, WHAT ARE WE TRYING TO SERVE FOR THESE PEOPLE? SO LOOKING AT THE CLOCK, EVERYONE IS SO GOOD ABOUT TIME. I'M NEVER GOOD ABOUT TIME. BUT MOVING FORWARD, THINKING ABOUT HOW WE EXPAND THE SCOPE OF OUTCOME MEASURES. OBVIOUSLY WE HAVE TO DEFINE THIS AND EMOTIONAL HEALTH AND WELL-BEING IS A BIG THING. CONCEPTUALIZING IT IN MULTIPLE DIFFICULT WAYS. I'M NOT HERE TO SUGGEST ONE WAY OR THE OTHER. WE MIGHT THINK ABOUT THIS WITH RESPECT TO DIFFERENT CONTEXT. WE CAN LOOK TO THE EMOTION LITERATURE. WE HAVE COLLEAGUES AT BERKLEY WHO HAVE SPENT THEIR ENTIRE CAREERS THINKING ABOUT HOW WE DEFINE HAPPINESS. IF WHY LOOK AT THOSE ACTUAL DEFINITIONS, THEY MAP ON TO MEASURES THAT WE REALLY HAVE ALREADY AT OUR DISPOSAL. SO THINGS LIKE THE PROMISE AUTISM BATTERY HAS DIFFERENT FACETS OF SUBJECTIVE WELL-BEING AND EMOTIONAL DISTRESS. IF WE LOOK TO THE SEVERE PROFOUND INTELLECTUAL DISABILITY LITERATURE, THERE IS NICE REVIEWS ON HOW WE ASSESS MENTAL HEALTH PROBLEMS AND DIFFERENT FASELS OF WELL-BEING IN THAT POPULATION. AND THERE IS A FEW INSTRUMENTS THAT YOU COULD ARGUE HAVE SOME GOOD PSYCHOMELT RICK PROPERTIES. CERTAINLY, WHILE THOSE WILL BE MATCHED WITH RESPECT TOESS EXPRESSIVE LANGUAGE, THIS DOESN'T RECOGNIZE THAT SOME PEOPLE HAVE DIFFERENCES IN COGNITIVE ABILITIES BUT IT ALSO DOESN'T NECESSARILY REFLECT THE WAYS IN WHICH AUTISTIC PEOPLE, MINIMALLY VERBAL OR NOT, MAY MANIFEST OR EXPRESS THEIR EMOTIONS. SO I THINK WE REALLY HAVE TO CONSIDER THAT PARTICULAR SUBGROUP OF PEOPLE. AND SO WE DON'T HAVE A LOT OF EMOTIONAL WELL-BEING OR MENTAL HEALTH MEASURES SPECIFICALLY DESIGNED TO ASSESS THESE CONSTRUCTS IN MINIMALLY VERBAL AUTISTIC PEOPLE. THE EMOTION DYSREGULATION INTERVIEW OR INVENTORY HAS INCLUDED SOME MINIMALLY VERBAL PEOPLE AND THEY LOOKED AT DIFFERENTIAL ITEM FUNCTIONING BASED ON VERBAL ABILITIES THAT WERE GOING IN THE RIGHT DIRECTION. AND ALL OF THESE PLACES ARE GREAT TO START. BUT I ALSO HAVE TO ACKNOWLEDGE, THIS IS A REALLY BROAD CONCEPT. DO WE REALLY THINK A LANGUAGE INTERVENTION WILL CHANGE SOMEONE'S FUNDAMENTAL SUBJECTIVE WELL-BEING? I THINK THAT'S THE GOAL. THAT'S THE HOPE. BUT CERTAINLY THAT IS A TALL ORDER. AND SO WE MIGHT ALSO NEED TO THINK ABOUT HOW DO WE DEVELOP ASSESSMENTS OR TOOLS OR INSTRUMENTS OF EXPERIENCES THAT ARE MORE CONFINED TO THE KINDS OF CONTEXT AND SITUATIONS THAT COMMUNICATION IS BEING FOCUSED IN? JUST A QUICK CAUTION AND EXISTING MEASURES. THIS IS A PUBLISHED STUDY. BASICALLY THERE ARE INSTRUMENTS OUT THERE, MANY OF WHICH WERE NOT DESIGNED FOR USE WITH INDIVIDUALS ACROSS THE LANGUAGE RANGE. AND THIS JUST SHOWS YOU THAT INSTRUMENTS LIKE THE CHILD BEHAVIOR CHECKLIST AND THE ADD VERRANT BEHAVIOR CHECKLIST, WHILE MEASURING SIMILAR CONCEPTS, SHOWED DIFFERENT PROFILES ACCORDING TO LANGUAGE ABILITIES. SO MINIMALLY VERBAL INDIVIDUALS HERE SHOW LOW INTERNALIZING SYMPTOMS WHEREAS HERE THEY ARE QUITE HIGH IN LETHARGY WHICH YOU MIGHT EXPECT TO BE MORE COMPARABLE. SO THERE ARE LOTS OF REASONS FOR THIS. ITEMS REQUIRE LANGUAGE AND MUCH MORE REFLECTION ON INTERNAL STATES. AND THESE THINGS SEEM OBVIOUS WHEN YOU LOOK TAT THAT WAY. IT'S EASY TO OVERLOOK WHETHER WE START TO TALK ABOUT LARGE COLLABORATION AND SECONDARY DATA ANALYSIS TO UNDERSTAND THIS SUBGROUP OF PEOPLE. I THINK THAT THERE IS A LOT OF EXCITING THINGS THAT WE COULD DO TO REALLY MOVE FORWARD IN TERMS OF UNDERSTANDING MINIMALLY VERBAL AND NON-SPEAKING PEOPLE. I THINK THAT THIS GROUP IN PARTICULAR WOULD BE REALLY AMAZING TO THINK ABOUT HOW WE PERCEIVE QUALITATIVE STUDIES TO REALLY UNDERSTAND THE WAYS IN WHICH MINIMALLY VERBAL OR NON-SPEAKING PEOPLE ON THE AUTISM SPECTRUM EXPRESS THEIR EMOTIONS. WHAT DO WHY MISS? WHAT MIGHT OVERLAP WITH OTHER INSTRUMENTS? WE KNOW FROM SPEAKING INDIVIDUALS STEMMING OFTEN IS USED TO EXPRESS HAPPINESS AS WELL AS FRUSTRATION OR EMOTION REGULATION AND SO HOW DO WE USE THAT INFORMATION? IF WE TALK TO PARENTS OF THESE MINIMALLY VERBAL AUTISTIC PEOPLE, THEY WILL TELL US THAT THEY KNOW WHEN THEIR SON OR DAUGHTER OR LOVED ONE IS HAPPY OR UPET AND SO HOW DO THEY KNOW? AND SO THERE IS LOTS OF DIFFERENT OBJECTIVE MEASURES AND LOTS OF DIFFERENT THINGS WE CAN USE TO INFORM OUTCOME MEASUREMENT. AND SO JUST A QUICK PLUG. I KNOW WE ARE TALKING ABOUT LANGUAGE INTERVENTIONS AND OUTCOMES. IF WE EXPAND RESEARCH TO FORK US ON MENTAL HEALTH IN MINIMALLY VERBAL AND NON-SPEAKING PEOPLE, WE'LL DO A LOT TO FIGHT AGAINST SOME OF THE ATTITUDES THAT GIACOMO HIGHLIGHTED YESTERDAY. SO WE NEED TO CHECK OUR OWN ATTITUDES AND BIAS SYSTEM. THOSE OF US OUT IN THE COMMUNITY WITH RESPECT TO WHAT WE PRIORITIZE FOR MINIMALLY VERBAL AUTISTIC PEOPLE. HOW WE VIEW MENTAL HEALTH AND HOW WE PRIORITIZE THAT. WE HAD A LOT OF GRANT REVIEWS THAT REALLY QUESTION PARENTS CAPABILITIES, OF REPORTING INTERNAL STATES, SELF REPORTED CAPABILITIES OF MINIMALLY VERBAL PEOPLE. THAT'S A REAL CHALLENGE WHEN YOU CAN JUST SEE THE BIAS AND THE STEREOTYPES THAT ARE COMING THROUGH EVEN AT THE LEVEL OF GRANT REVIEWS. I HAVE A GRADUATE STUDENT I'LL HIGHLIGHT QUICKLY WHO HAS FUNDING FROM AUTISM SCIENCE FOUNDATION TO LOOK AT EXISTING MEASURES OF DEPRESSION AND ALSO TO MOVE US FORWARD WITH SOME QUALITATIVE RESEARCH TO UNDERSTAND SOME OF THOSE MANIFESTATIONS. AND SO I'LL END BY SAYING, LANGUAGE HAS A FUNCTION AND IT HAS A PURPOSE. REALLY MEASURING MEANINGFUL OUTCOMES REALLY REQUIRES US TO THINK ABOUT HOW WE WANT TO CAPTURE PROGRESS WITH RESPECT TO THAT LARGER PURPOSE. AND THAT WE NEED TO MAKE SURE THAT NOT ONLY WE DON'T HOWEVER LOOK IT BUT WE HAVE TO TAKE A MORE CAREFUL LOOK AT HOW TO MEASURE THAT. THANK YOU. >>HELEN TAGER-FLUSBERG: THANK YOU VERY MUCH, VANESSA. THAT WAS AN ENLIGHTENING TALK FOR SOMEONE LIKE ME WHO FOCUSES TOO NARROWLY ON THE LANGUAGE OUTCOME PIECE AND NOT THE BIGGER PICTURE. AND THAT BIGGER PICTURE, I THINK, IS CRITICAL FOR ALL THE KEY STAKEHOLDERS THAT WE ARE TRYING TO REPRESENT AND DISCUSS HEREBY. SO WE'LL TURN NOW TO OUR FRIEND, FREDRICK SCHICK, WHO WILL TALKED ABOUT EYE TRACKING MEASURES FOR MINIMALLY VERBAL POPULATIONS. I'M EXCITED TO HEAR THIS WORK. A LOT OF TALK ALMS ABOUT THE EXTENT TO WHICH WE CAN AND SHOULD BE USING EYE TRACKING AS AN IMPLICIT MEASURE FOR THIS POPULATION. SO, THANK YOU FRED. >>FREDERICK SHIC: SORRY. OKAY, ALL RIGHT. SO I HAVE SOME DISCLOSURES. CONSULTANT FOR JENSEN AND ROCHE AND ALSO TAKE VANESSA'S QUEUE AND ADMIT I'M A COMPUTER SCIENTIST SO I REALLY DON'T KNOW ANYTHING ABOUT ANYTHING. NOT EACH ABOUT COMPUTERS WHICH IS ACTUALLY KIND OF SURPRISING. SO, WHEN WE TALK ABOUT EYE TRACKING, IN STUDIES OF AUTISM, TYPICALLY WE ARE TALKING ABOUT SETUPS THAT LOOK LIKE THIS. THIS IS A TRADITIONAL LAB-BASED DESKTOP MOUNTED OCULAR GRAPHIC DARK PUPIL EYE TRACKING SYSTEM. YOU CAN TELL IT IS DARK PUPIL BECAUSE OF THE WAYS THAT THE CAMERA WOULD BE ALIGNED WITH THE EYE. BUT YOU WOULDN'T EVEN KNOW THIS IS AN EYE TRACKER EXCEPT FOR THE PRESENCE OF TWO SMALL RED DOTS INDICATING THAT INFRARED LIGHTING IS BEING USED TO GET A CORNEA REFLECTION THAT WILL ALLOW THE EYE TRACKER TO HAVE A REFERENCE POINT FOR THE PUPIL. SO THIS SOUNDS LIKE THE MAIN TYPE OF SETUP AND MOST OF THE STUDIES WHEN WE THINK ABOUT STUDIES THAT IS HAVE INFORMED US ABOUT MINIMALLY VERBAL INDIVIDUALS WITH ASD COME FROM STUDIES OF TODDLERS. AND BY-AND-LARGE, I'M NOT GOING TO TALK TOO MUCH ABOUT THIS. I THINK THERE IS A WEALTH OF INFORMATION WE KNOW ABOUT TODDLERS NOW. THE THING THAT IS REALLY PROMISING IS THAT NOW WE ARE STARTING TO SEE SOME STUDIES THAT ARE LOOKING AT EYE TRACKING SPECIFICALLY USED IN THE CONTEXT OF TREATMENT, WHICH I THINK IS ONE OF THOSE THINGS THAT IT WON'T GET BETTER UNLESS WE ACTUALLY USE THESE. SO, OF COURSE WHEN WE ARE TALKING ABOUT MINIMALLY VERBAL TODDLERS AND THEN TALKING ABOUT MINIMALLY VERBAL OLDER CHILDREN WITH ASD, IT'S NOT THE SAME. THE MISSING INGREDIENT, DISPARITY OR THE DISCONNECT, IS DEVELOPMENT. THE DEVELOPMENT HAS A LOT OF DIFFERENT COMPLEX ROLES THAT AREN'T ALWAYS IMMEDIATELY OBVIOUS. SO THIS IS A STUDY LOOKING AT CHILDHOOD DISORDER, ASSUMED UNDER ASD5. SO IN CDD, THESE CHILDREN TYPICALLY SHOW RAPID AND SIGNIFICANT REGRESSION ABOUT 3 AND 4 YEARS OF AGE AND MOST OF THEM AND AS MINIMALLY VERBAL, MOST ARE IN THIS STUDY. IN THIS PARTICULAR STUDY, THE SCANNING PATTERNS OF THOSE CHILDREN WHO HAVE CDD, ACTUALLY LOOK A LOT MORE SIMILAR TO THE SCANNING PATTERNS OF THE TIP WOULD WOULD CALL DEVELOPING CHILDREN. WHEN YOU THINK ABOUT DISTRIBUTION OF ATTENTION BETWEEN THE EYES AND THE MOUTH. THE GROUP THAT IS VERY DIFFERENT FROM THE OTHERS ARE THOSE WHAT WE MIGHT CONSIDER TO BE THE VERBAL CHILDREN WITH ASD. SUGGESTING THAT THIS MAY BE ACTUALLY A DEVELOPMENTAL COMPENSATORY MECHANISM. THE ABSENCE OF WHICH MAY BE REFLECTED IN THE CDD GROUP. OF COURSE IT COULD BE ALL RELATED TO OVERALL IQ LEVELS. BUT IT IS ONE OF THE THINGS THAT HIGHLIGHTS HOW INCLUSION OF MINIMALLY VERBAL CHILDREN ACTUALLY MAKES THE SCIENCE BETTER BECAUSE IT ALLOWS US TO EXPLORE AND LOOK AT AND THINK ABOUT THOSE DEVELOPMENTAL SYSTEMS THAT OTHERWISE MAY WORK IN WAYS WE DON'T EXPECT. THE OTHER PIECE IS THAT OFTENTIMES WE ARE EXCLUDING MINIMALLY VERBAL CHILDREN WITH ASD FROM EYE TRACKING STUDIES, WE ARE ALSO MISSING ALL OF THESE OPPORTUNITIES TO REALLY BROADEN THE SCIENCE. AT THIS POINT, THERE IS SO MUCH SCIENCE OUT THERE THAT IS IT REALLY DOING A IT DISSERVICE NOT JUST TO THE MINIMALLY VERBAL CHILDREN WITH ASD BUT FOR ALL CHILDREN WITH ASD BECAUSE WE ARE NOT UNDERSTANDING THE FULL PICTURES. IF WE WANT TO GET THERE, THIS BRINGS ME TO MY FIRST POINT. ONE OF THE THICK WE SHOULD BE DOING IS OMNI DIRECTIONAL INCLUSION OF MINIMALLY VERBAL CHILDREN WITH ASD INTO EYE TRACKING STUDIES IN A CHRONOLOGICAL AGE AND ALSO IN A DEVELOPMENTAL AGE MESHED WAY. WE SHOULD INCLUDE OLDER MINIMALLY VERBAL CHILDREN WITH ASD ALONGSIDE YOUNGER CHILDREN WITH ASD. THOSE LONGITUDINAL STUDIES ALLOW US TO MAP THE EARLIER PRECURSORS FOR LIKELY MEMBERSHIPPING TO MINIMALLY VERBAL ASD GROUP AS COMPARED TO NOT BECAUSE THAT TELLS US ABOUT THEORETICALLY IMPORTANT DEVELOPMENTAL MECHANISMS AND ALSO PRACTICALLY THINGS THAT MIGHT BE USEFUL FOR TREATMENT PLANNING DOWN THE LINE. SO WHAT DO WE KNOW ABOUT MINIMALLY VERBAL CHILDREN WITH ASD RIGHT NOW? I'M NOT GOING TO GOING INTO DEPTH HERE BUT THERE IS A SMALL NUMBER OF STUDIES USING EYE TRACKING. WORK BY THOMPSON AND COLLEAGUES, PRELIMINARY WORK BY CAITLYN CUED ACK AND OTHERS, AS WELL AS WORK BY -- I BUTCHERED THAT NAME. ARE HIGHLIGHTING ONE ASPECT THAT SEEMS TO BE PRETTY COMMON ACROSS THESE STUDIES WHICH IS THAT THERE IS A PORTION OF THE MINIMALLY VERBAL A SD GROUP WHO ARE ESSENTIALLY LOSING DATA OR ARE OFF TASK MORE THAN WOULD BE EXPECTED. AND THIS REALLY MAKES IT VERY DIFFICULT TO I THINK INTERPRET THESE EYE TRACKING MEASURES AS THEY ARE DESIGNED. SO THAT BRINGS ME TO THE SECOND POINT WHICH IS THAT I THINK ANOTHER PLACE THAT EYE TRACKING STUDIES NEED TO GO IS WE NEED NUANCED APPRECIATION OF LOST DATA BECAUSE THEY IR NOT ON TASK DOESN'T MEAN THEY ARE NOT DOING ANYTHING. EVEN IF THEY ARE -- YOUR EYES ARE CLOSED, SOMETHING IS HAPPENING. AND THAT MEASUREMENT OF THOSE PROCESSES CAN TELL US SOMETHING SPECIFIC ABOUT WHAT IS HAPPENING WITH THESE MINIMALLY VERBAL CHILDREN. SO HOW DO WE GET THERE? ONE WAY IS THAT WE REALLY NEED A MULTILEVEL QUANTIFICATION OF LOST DATA AND ERROR. WE KNOW THAT THESE SUPPOSED QUALITY CONTROL VARIABLES ARE AS ASSOCIATED WITH CLINICAL PHENOTYPE IN ASD AS PRIMARY VARIABLES ARE. AND SO OF COURSE WE CAN VIEW THIS AS A NUISANCE OR TURNING IT ON ITS HEAD. WE CAN VIEW THIS AS AN OPPORTUNITY OF UNDERSTANDING A LITTLE BIT MORE FULL EXPRESSION OF AUTISM AS IT APPLIES TO MINIMALLY VERBAL CHILDREN. THE SECOND THING THAT WE SHOULD BE DOING IN TERMS OF LOST DATA, IS AUGMENTING OR EYE TRACKING WITH ADDITIONAL TOOLS. AND ONE PLACE THAT REALLY HAS A LOT OF POTENTIAL IS THE USE OF COMPUTATIONAL VISION TOOLS. THEY HAVE MATURED EXTRAORDINARILY. THEY ARE NOT AT THE POINT WHERE YOU CAN PULL IT OFF THE SHELF AND INSTALL IT AND HOPE IT WORKS, BUT IT IS ACTUALLY GETTING TO THAT POINT. DATA IN, RETRAIN THE DATA, TRANSFER LEARNING, SOLVE THE PARTICULAR PROBLEM YOU'RE INTERESTED IN AND SOLVE IN AIR QUOTES OF COURSE. WE HAVE ALL THESE TRADITIONAL EYE TRACKING MEASURES THAT HAVE BEEN DISCUSSED IN THE LITERATURE AND NOW WE ARE ADDING TO THIS COMPUTER VISION. SOME OF THE THINGS THAT COME ALONG WITH COMPUTER VISION ARE THE ABILITY TO THINK ABOUT CHARACTERIZING THE FULL RANGE OF ENGAGEMENT WITH TASK AND EYE TRACKING MEASURES. IT ALSO MEANS THAT WE CAN START LOOKING AT ADDITIONAL THINGS LIKE -- GOING BACK TO WHAT VANESSA WAS TALKING ABOUT. WE DON'T KNOW IF EXPRESSIONS ARE VIEWED IN THE SAME WAY. ONE THING THESE SYSTEMS CAN DO IS QUANTIFY THE PRECURSORS WE TYPICALLY CONSIDER AS FACIAL EXPRESSION THAT IS CAN BE REALLY USEFUL. WE WON'T KNOW THE EXPRESSIONS AREN'T THE SAME UNLESS WE ARE MEASURING THEM. AND ON TOP OF ALL OF THIS, APPLYING OTHER TYPE OF COMPLEMENTARY MODALITIES TO UNDERSTAND THE FULL CONTEXT OF WHAT EYE TRACKING IS TELLING US ABOUT ABOUT LOOPING PATTERNS. WE TALKED ABOUT A TON OF VARIABLES AND THE ONLY WAY WE'LL MAKE PROGRESS IN THAT IS BY REALLY APPLYING COMPLEX MONDAY LEARNING -- IT'S ONE OF THE WAYS THAT THEY CAN SIMPLIFY OUR ABILITY TO MAKE USE OF THIS DATA. BASICALLY UNDERSTANDING THE COMMONALTIES BETWEEN ALL THESE DIFFERENT TYPES OF MEASURINGS INTO SOMETHING MORE USEABLE. SO THINKING ABOUT SOME ADDITIONAL THINGS. I'M GOING TO GO THROUGH REALLY FAST NOW. COMPUTER VISION GIVES US THESE TOOLS THAT ALLOW US TO TAKE THIS OUT OF THE LABORATORY AND MOVE IT INTO HANDHELD CONSUMER DEVICES. WE HAVE SEEN THIS ALREADY IN TERMS OF FACIAL EXPRESSION, QUANTIFICATION IN LARGE SAMPLES IN TERMS OF EYE TRACKING ON AN iPAD AND iPHONE. AND THIS MAY GIVE US ALSO THIS OTHER PIECE OF EXPANDING OUR ABILITY TO REACH UNDERSERVED POPULATIONS. THE OTHER THING IT GIVES US IS DEPTH AND ACCESS. ONE OF THE THINGS THAT COMES OUT OF THE RESEARCH IN LOOKING AT EYE TRACKING AND LANGUAGE IS THAT NOT ALL MEASURES WORK THE SAME WAY IN INDIVIDUALS WHO ARE MINIMALLY VERBAL WITH ASD. ANOTHER THING, IF WE HAVE THESE THINGS IN HAND, IF WE HAVE ACCESSIBILITY AND ARE ABLE TO GIVE THESE SYSTEMS OUT AND MAKE THEM MORE READILY AVAILABLE, THIS MEANS WE CAN USE THESE TO UNDERSTAND -- AND USE FOR SPECIFIC PURPOSES. WORK SHOWED THAT CHILDREN WITH ASD WHO WERE OPERATING IN THIS SLIGHTLY CONTROVERSIAL STUDY WHERE A FACILITATOR IS HOLDING A SOUND BOARD FOR AN INDIVIDUAL WITH ASD WHO IS TAPPING ON TO THE TOUCH BOARD IN ORDER TO WRITE. IT SHOWED THAT THE EYE OF THE INDIVIDUAL WITH AUTISM, THESE ARE NON-SPEAKING INDIVIDUALS, MOVES BEFORE THE FINGER PRESS SUGGESTING THEY ARE INDEED THE ONES DRIVING THIS COMMUNICATION. THIS IS JUST A SIMPLE EXAMPLE OF HOW WE COULD HOPEFULLY REMOVE THE PERSON FROM THE LOOP. THIS IS A SYSTEM TO LOOK AT 2002. OVER TWO DECADES AGO. THESE SYSTEMS FOR RAPID TYPING WITH THE EYES, I THINK THEY SAID IT GOES UP TO ABOUT 25 WORDS PER MINUTED. SO EXTREMELY RAPID. OF COURSE THIS WOULD NOT WORK FOR EVERY INDIVIDUAL WITH ASD BUT IT MIGHT WORK FOR SOME. THE REASON WHY I BRING THIS UP IS BECAUSE THIS IS IN A NEW AGE WHERE A NEW AGE OF GENITIVE AI WHERE WE HAVE AI SYSTEMS TALKING TO EACH OTHER MAKING FULL PARAGRAPHS, BEING ABLE TO HAVE CONVERSATIONS AND JUST A MATTER OF TIME BEFORE WE TAKE SYSTEMS LIKE THIS WHERE YOU TYPE WITH YOUR EYES AND TURN THEM INTO FULL CONVERSATIONS USING THESE AI. AND SO, OF COURSE WE DON'T HAVE TO STOP THERE. ALL OF THESE SYSTEMS, MULTIMETHOD SYSTEMS, CAN BE BRIDGED INTO THESE AI SYSTEMS TO PROVIDE GREATER EXTENSIONS OF THE INDIVIDUAL WITH AUTISM. THE IDEA HERE IS THAT THESE SYSTEMS WORK WELL. THIS DASHER SYSTEM FOR EYE TAPPING WORKS WELL BECAUSE IT PREDICTS WHAT THE NEXT CHARACTER SHOULD BE. IN MANY WAYS WE CAN CONSIDER AI THE NEXT STEP IN THAT PREDICTING FURTHER WHAT THAT INDIVIDUAL WITH ASD WOULD WANT TO SAY. THERE IS THE SLIPPERY SLOPE HERE WE CAN GET INTO IF IT'S OF INTEREST. THE LAST THING, OR NEXT TO THE LAST THING, WE NEED MORE PRECISE MEASURES. NO WAY AROUND THIS. IF WE WANT BETTER MEASURES OF EYE TRACKING MEASURES OF RECEPTIVE LANGUAGE SKILLS, WE HAVE TO BUILD IT. THIS IS ONE OF THE MOST RIGULOUSLY DESIGNED MEASURES I HAVE SEEN IN EYE TRACKING PERIOD. AND EVENLY HERE FOR THE MINIMALLY VERBAL CHILDREN YOU CAN SEE THERE IS A LOT OF HETEROGENEITY. THAT WE EXPECT. NOT ALL MEASURES WILL WORK THE SAME WAY GIVEN THE LARGE EXPANSIVE DEVELOPMENTAL HETEROGENEITY WE SEE IN MINIMALLY VERBAL CHILDREN. THIS IS WORK WE NEED TO DO. WE ALSO NEED TO ADDRESS WHICH TYPE OF TECHNOLOGY FOR WHOM SOME ARE GOING TO RESPOND WELL TO THESE SCREENS AND SOME WILL NEED SOMETHING MORE TO PAY ATTENTION TO THE SCREEN. SOME WILL IN FACT NOT EVEN BE ABLE TO PAY ATTENTION TO THE SCREENS AND WILL NEED TO GO TO PHYSICAL EMBODIED SYSTEMS LIKE ROBOTS OR MECHANICAL AUTOMATION. AND THIS ALL BASICALLY SUGGESTS THAT WE NEED TO DEVELOP A SCIENCE OF ADAPTING OUR TASKS TO THE DIFFERENT PREFERENCES, BIASES, ABILITIES OF MINIMALLY VERBAL INDIVIDUALS WITH ASD IN THE SAME WAY WE WOULD TRANSLATE A STANDARD MEASURE INTO SPANISH, WHICH WE THINK ABOUT TRANSLATING THIS INTO DIFFERENT MODALITIES. THE LAST PART IS THERE IS A POSSIBILITY THAT WE CAN START THINKING ABOUT INTERACTIVE EYE TRACKING IN A WAY WE HAVE NEVER THOUGHT OF BEFORE. PREVIOUS WORK THAT WE HAVE DONE SECRETARIES THAT INTERACTIVE EYE TRACKING SYSTEMS CAN LEAD A YOUNG CHILD WITH ASD INTO LEARNING A NEW STRATEGY FOR LOOKING AT SOCIAL INFORMATION IN COMPLEX SOCIAL SCENES. WHAT DO WE DO NOW WITH AI TO GENERATE UNLIMITED NUMBERS OF STIMULI ADAPTIVELY ON THE BASIS OF DIFFERENT TYPES OF CRITERIA IN ANY SITUATION YOU CAN IMAGINE YOU CAN GENERATE NEW TYPES OF IMAGES. WHAT WOULD WE DO WITH THAT POWER? ALL OF THESE CLIP ART I HAVE PUT INTO THIS PRESENTATION ARE GENERATED BY AI. NONE OF THE PEOPLE EXIST. NONE OF THE OBJECTS, NONE OF THESE EYE TRACK EARLS EXIST W THIS TYPE OF TECHNOLOGY, YOU CAN IMAGINE HOOKING UP INTO THE CREATION, OPTIMIZATION OF PORTO COLS, SYSTEMS THAT CAN ADAPT REFINE BOTH HOW TO COLLECT DATA AND WHAT TYPE OF DATA WE ARE COLLECTING FROM MINIMALLY VERBAL CHILDREN TO MAKE BETTER PREDICTIONS TOWARDS SOME SPECIFIC OUTCOMES WE CHOOSE. THE LAST THING I WILL SAY IS THAT THIS IS SOMETHING THAT I SEE ALMOST EVERY DAY, WHICH IS THE -- IF YOU LOOK AT THIS, WHAT I SEE, I SEE A DRUNKEN OCTOPUS. I SEE IT EVERY DAY. MAYBE YOU SEE IT ALSO. AND MAYBE YOU WANT TO FIGHT IT BECAUSE IT LOOKS LIKE IT WANTS TO BOX. BUT CLEARLY, I'M JUST MAKING THAT UP. LIKE I SAW THAT AND IT'S STUCK IN MY HEAD AND IT'S -- THE MORE I THINK ABOUT IT, ALL THESE SOCIAL GREGS AND SOCIAL CONVENTIONS WE HAVE, COMMUNICATION, OUR LANGUAGE, THESE ARE THINGS THAT ARE SYSTEMS THAT WE HAVE UNIVERSALLY DECIDED TO DILUTE OURSELVES INTO BELIEVING ARE COMMON AND UNIVERSAL WHEN THEY ARE NOT. AND SO, I WOULD SIGH THAT WE HAVE TO BE CAREFUL IN OUR STUDIES OF EYE TRACKING AND DEFINING OUTCOME MEASURES IN ASSUMING WHAT IS CORRECT AND GOOD WITH THE RECOGNITION THAT LIKE THIS DRUNK OCTOPUS IS JUST A FABRICATION. IF AI CAN LEARN THIS LANGUAGE OF SPOKEN WORD FOR NEUROTIP CALLS, MY HOPE IS THAT WE CAN ALSO APPLY THAT SAME TYPE OF TECHNOLOGY TOW LEARN THE INDIVIDUAL LANGUAGE OF PEOPLE WITH ASD, ONE THAT INCLUDES THE REPRESENTATION IN SOME TYPE OF COLLECTIVE COMPROMISE. AND SO, THANK YOU. SORRY. I'M SO OVER. >>HELEN TAGER-FLUSBERG: THANK YOU VERY MUCH, FRED. THERE WAS AN AWFUL LOT FOR YOU TO PRESENT AND EVEN MORE FOR THE REST OF US TO TRY TO TAKE IN. BUT WE REALLY -- IT'S AMAZING TO SEE WHAT IS HAPPENING IN THE WORLD OF EYE TRACKING. WE ARE GOING TO TURN TO A PRESENTATION TO NANCY GRADY. UNFORTUNATELY SHE IS NOT ABLE TO JOIN US IN PERSON THIS AFTERNOON. BUT SHE HAS PREPARED HER REMARKS. JUDITH, I THINK YOU'RE GOING TO BE PRESENTING THAT? [ BACKGROUND NOISE ] >>CONNIE KASARI: JUDITH, ARE YOU TRYING TO -- YOU NEED TO SHARE YOUR SCREEN. >>DR. COOPER DO YOU HAVE A VIDEO? >>JUDITH COOPER: YES, ARE YOU NOT SEEING THIS? HOLD ON JUST A MINUTE. >>SHE'LL BE HERE IN TWO SECOND IF YOU NEED HER. >>JUDITH COOPER: I KNOW WHAT I DID WRONG. I JUST HAVE TO GET OUT OF THIS. >>CONNIE KASARI: IT'S CLEAR WE NEED IMPROVED TECHNOLOGY. >>JUDITH COOPER: STOP, STOP. I'M TRYING TO SHARE SCREEN. HERE WE GO. >>THERE YOU GO. >>JUDITH COOPER: ALL RIGHT. >>SHARE SOUND. >>JUDITH COOPER: OKAY, I'M HOPING IT IS ALREADY SHARED. >>I'M NANCY GRADY AND WE ARE TALKING ABOUT SOCIAL CUES IN AUTISTIC CHILDREN WITH MINIMAL SPEECH. LET'S STEP BACK AND -- [ INAUDIBLE ] SO ALL OF -- [ DISTORTED VIDEO ] [ DISTORTED SOUND ] [ DISTORTED SOUND ] STANDARDIZED MEASURES OF COMMUNICATION ARE HELPFUL TO US. STANDARDIZED MEASURES THAT ARE DERIVED -- [ DISTORTED AUDIO ] >>HELEN TAGER-FLUSBERG: I THINK IT WAS DIFFICULT FOR SOME OF US TO HEAR EVERYTHING, NANCY WAS SAYING AND THE SLIDES SEEMED A LITTLE BIT SMALL; BUT WE HOPE THAT PERHAPS THROUGH THE EDITING WHEN WE DISSEMINATE THE WEBINAR, WE'LL BE ABLE TO CAPTURE MORE OF WHAT NANCY WAS PRESENTING ON THE CRUCIAL OUTCOMES OF SOCIAL COMMUNICATION. AND LIKE OUR OTHER SPEAKERS, PUT THAT IN A BROADER PERSPECTIVE. WE ARE GOING TO TURN NOW TO COMMENTARY ON THIS FROM LEONARD ABBEDUTO. LEN, PLEASE GO AHEAD. >>LEONARD ABBEDUTO: I'M NOT GOING TO USE ANY SLIDES SINCE IT ALMOST ALWAYS DOESN'T WORK FOR ME WITH TECHNOLOGY. SO, FIRST OF ALL THESE WERE FOUR GREAT PRESENTATIONS AND I PROBABLY SHOULD JUST START BY SAYING, WOW. BUT I WON'T. I'LL DO A LITTLE MORE COMMENTARY. SO THE FIRST THING I SHOULD SAY IS THAT THERE REALLY IS NO PERFECT OUTCOME MEASURE AND I THINK EVERYTHING HAS STRENGTHS AND LIMITATIONS. SO, SOME OF US WE HAVE PARTICULAR BIASES OF MEASURES WE ARE COMFORTABLE WITH AND SO I'LL TAKE THAT INTO ACCOUNT WITH MY COMMENTS. I WANTED TO COMMENT A LITTLE BIT ON VANESSA'S WONDERFUL PRESENTATION. VANESSA WAS A LITTLE BIT APOLOGETIC ABOUT NOT FOCUSING ON LANGUAGE BUT I THINK THAT WAS REALLY A WONDERFUL -- BECAUSE OFTENTIMES WHEN WE WRITE OUR PUBLICATIONS ON LANGUAGE, WE'LL SAY, AND THIS IS IMPORTANT BECAUSE IT IMPACTS HOW YOU LEARN. HOW YOU'RE INCLUDED IN THE WORLD AND HOW HAPPY YOU ARE AND ALL OF THESE OTHER MEASURES. I THINK THE IDEA THAT WE NEED TO BEGIN TO TIE LANGUAGE OUTCOME MEASURES TO THESE BROADER FUNCTIONAL OUTCOME MEASURES IN OTHER DOMAINS IS REALLY CRITICAL. WE JUST PUBLISHED SOMETHING RECENTLY IN A DIFFERENT CONTEXT, ON INDIVIDUALS WITH FRAGILE X SHOWING SOME OF OUR LANGUAGE OUTCOME MEASURES ARE TIED TO LEVELS OF ADAPTIVE BEHAVIOR AND THE CAPACITY FOR SELF DETERMINATION. AND I THINK THOSE ARE THE MEASURES THAT REALLY WILL HELP US ARGUE THAT INTERVENTIONS ARE HAVING A BIG IMPACT. SO I THINK IT IS REALLY CRITICAL. THE OTHER THING IS I THINK THAT ISSUES OF BEHAVIORAL HEALTH AND EMOTIONAL WELL-BEING, THOSE ARE FACTORS THAT WILL MODERATE THE EFFECTS OF ANYTHING INTERVENTION ON LEARNING OUTCOMES. IF ONE IS NOT ENGAGED, IF ONE IS UNHAPPY, IF ONE IS SOCIALLY ANXIOUS, ALL OF THOSE THINGS WILL LIMIT INTERVENTIONS. SO I THINK HER RESEARCH AND HER COMMENTS REALLY ADD A CRITICAL DIMENSION TO WHAT WE DO IN THE LANGUAGE INTERVENTION FIELD. FRED'S TALK IS ALWAYS SO SOPHISTICATED AND ALWAYS EMBARRASSES ME ABOUT HOW LITTLE I KNOW ABOUT TECHNOLOGY. I WANT TO MAKE A COUPLE OF COMMENTS ON EYE TRACKING. I THINK THE BEAUTY OF EYE TRACKING WHICH FRED SO NICELY ILLUSTRATED, WAS THE FACT THAT WE CAN OVERCOME SOME OF THE QUOTE/UNQUOTE PERFORMANCE LIMITATIONS OF INDIVIDUALS TO REALLY UNDERSTAND WHAT IS GOING ON IN THEIR HEAD, WHAT THEY KNOW, WHAT THEIR INTENTIONS ARE. AND I THINK THAT IS INCREDIBLY VALUABLE. I THINK HIS POINT ABOUT LOST DATA IS OFTEN NEGLECTED IN THE FIELD WHEN WE USE THESE AUTOMATED MEASURES. I THINK THAT RECOGNIZING WE MAY NEED TO DO SOME TRAINING THROUGH BEHAVIOR ANALYSTS IN TERMS OF GETTING PEOPLE READY TO PARTICIPATE IN EYE TRACKING SO WE HAVE MORE PEOPLE THAT CAN PARTICIPATE AND FEWER LOST DATA POINTS IS REALLY CRITICAL. I DO THINK THAT THE THINGS THAT WE NEED TO THINK ABOUT AS WE LOOK AT THESE MORE SUBTLE TECHNOLOGICAL MEASURES IS ARE THEY TIED -- CAN WE SHOW THEY ARE TIED TO MORE FUNCTIONAL OUTCOME MEASURES? IF EYE TRACKING DOESN'T PREDICT COMMUNICATION USE AND MORE NATURALISTIC SETTINGS, THAT BECOMES PROBLEMATIC. I THINK WE NEED TO HAVE THOSE KINDS OF DATA. I ALSO THINK EYE TRACKING MEASURES, WE NEED TO BEGIN TO DO REALLY SERIOUS PSYCHOMETRIC WORK. WE NEED TO ASK ABOUT ISSUES OF CONSTRUCT VALIDITIY, TEST FOR RELIABILITY AND PRACTICE EFFECTS AND SO ON. WE ARE TO THE POINT WITH MANY OF THESE MEASURES WE CAN BEGIN TO DO THAT. I THINK -- I WOULD ALSO THINK THAT WONG OF THE THINGS THAT NANCY DIDN'T TOUCH ON THIS TOO MUCH BUT I THINK WHEN WE THINK ABOUT THE TIMEFRAME OF MEASUREMENT AND INTERVENTION STUDIES, UNFORTUNATELY WE TAKE PRE AND POST AND A LITTLE BIT OF MAINTENANCE AND SOME OF THESE INTERVENTIONS. BUT WE EXPECT THAT LEARNING WILL CONTINUE TO IMPROVE OVER TIME. SO WE REALLY NEED A LONGER DURATION OF ASSESSMENTS AND INTERVENTIONS TO UNDERSTAND THEIR EFFECTS. AND I THINK THAT IS PARTICULARLY TRUE WHEN WE TALK ABOUT CAREGIVER IMPLEMENTED INTERVENTIONS WHERE THE EFFECTS MAY BE REALLY DELAYED. AND I THINK THAT HAS AN IMPACT, THAT IS IMPACTED BY THE FUNDING MECHANISMS WE HAVE THAT HAVE THESE FIVE YEAR CYCLES. THAT IS SOMETHING TO THINK ABOUT. I WANT TO ALSO JUST KIND OF ARGUE A LITTLE BIT FOR US TO RELY MORE ON NATURALISTIC COMMUNICATION SAMPLING WHERE WE ARE REALLY LOOKING AT PEOPLE IN EVERY DAY MEANINGFUL CONTEXT AND OBSERVING THEIR BEHAVIOR MAKING -- THE VALUE OF THAT IS WE CAN LOOK AT COMMUNICATION WHETHER INDEPENDENT OF MODALITY. I THINK THAT IDEALLY IT IS GREAT TO LOOK AT, HAVE LOTS OF DATA POINTS OVER MANY DIFFERENT CONTEXT IN A PERSON'S LIFE. AS CATHY POINTED OUT, THAT IS NOT FEASIBLE. I DO THINK THAT AS ARTIFICIAL INTELLIGENCE AND MACHINE LEARNING IMPROVE, I THINK THAT MAYBE THAT BECOMES MORE REALISTIC. IN THE SHORT TERNAL, I THINK WE HAVE TO TAKE BRIEF SAMPLES SO WE ARE NOT UNDULY BURDENING RESEARCHERS OR FAMILIES IN TERMS OF HOW OFTEN WE ARE IN THEIR LIVES. I THINK IF WE GO WITH GRIEF SAMPLES WE REALLY NEED TO BALANCE NATURALISTIC SETTINGS WITH STANDARDIZATION. AND I THINK THE BASK IS A NICE EXAMPLE OF THAT. IT'S NATURALISTIC. BUT THERE IS STRUCTURE IN TERMS OF HOW YOU'RE DOING IT. IF WE DON'T HAVE STRUCTURE, IF WE DON'T HAVE SOME STANDARDIZATION OF CONTENT AND STANDARDIZATION OF THE PARTNER'S BEHAVIOR, IT BECOMES REALLY DIFFICULT TO HAVE COMPARABLE ASSESSMENTS OVER TIME TO LOOK AT AN INDIVIDUAL IN WHICH AN INDIVIDUAL IS CHANGED. SO WE REALLY NEED TO BALANCE NATURALISTIC ASSESSMENTS WITH STRUCTURE AND STANDARDIZATION. WE HAVE DONE THAT IN DIFFERENT POPULATIONS THAT HAVE PHRASED SPEECH LOOKING AT EXPRESSIVE LANGUAGE SAMPLEELING AND IT IS DOABLE. WE SHOULD SHOWN YOU CAN TRAIN PARENTS TO BE JUST AS EVENT. ADMINISTRATION OF THESE MEASURES AND ADHERING TO STRUCTURE WITH TRAINING AS EXAMINERS. SO I THINK THERE IS LOT OF THINGS WE NEED TO DO. BUT I THINK STRUCTURE IS CRITICAL IF WE ARE GOING TO HAVE SHORT ASSESSMENTS. A COUPLE OF OTHER POINTED I THINK ARE CRITICAL TO ANYTHING WE DO WITH OUTCOME MEASURES. WE REALLY NEED TO THINK ABOUT THE PSYCHOMETRIC PROPERTIES. AND WE NEED TO LOOK AT THOSE BORING THINGS LIKE TEST RETEST RELIABILITY AND PRACTICE EFFECTS AND ALL OF THAT. AND TO DO THAT, YOU NEED A FAIRLY LARGE SAMPLE OF PARTICIPANTS, WHICH WILL BE A CHALLENGE, I THINK, FOR OUR FIELD. AND JUST ONE EXAMPLE, WE DID IN OUR STUDIES OF DIFFERENT GROUPS OF INDIVIDUALS WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES AS WELL AS INDIVIDUALS WITH AUTISM, WE HAD CLOSE TO 100 PARTICIPANTS SO WE CAN REALLY GENERATE AND SHOW THAT WE HAVE GOOD TEST RETEST RELIABILITY AND ALL THOSE THINGS. AND NO PRACTICE EFFECTS. BUT 100 PARTICIPANTS WORKS AT A GROUP LEVEL T DOESN'T WORK VERY WELL WHEN YOU WANT TO HAVE AN INDIVIDUALIZED MEASURE LIKE RELIABLE INDEX OF CHANGE. AND SO, WHEN WE LOOK AT STANDARDIZED TESTS, WHICH I THINK ARE NOT ADEQUATE FOR OUTCOME MEASURES, WE ARE TALKING ABOUT STANDARDIZATION ON SAMPLES OF HUNDREDS IF NOT THOUSANDS OF PARTICIPANTS. SO I THINK ONE OF THE CHANNELLESS FOR THE FIELD THEN IS MAYBE AS WE DO INTERVENTIONS IS TO BUILD IN SOME PSYCHOMETRIC WORK AND AGGREGATE ACROSS STUDIES. SO MAYBE WE HAVE A LONGER PLACEBO LEAD IN PHASE TO A TREATMENT TRIAL WHERE WE CAN LOOK AT TEST RETEST RELIABILITY PRACTICE EFFECTS, CONSTRUCT VALIDITY AND IF WE DO THE SAME SORTS OF MEASURES ACROSS MULTIPLE INTERVENTIONS, WE MAY GET THERE IN TERMS OF PSYCHOMETRICS. AND THEN THE LAST COMMENTS I'LL MAKE REALLY HAVE TO DO WITH KIND OF THE PARTICIPANTS IN OUR SAMPLE OFTENTIMES WERE NOT VERY GOOD ABOUT CREATING PSYCHOMELT RICK WORK THAT MAPS ON TO WHO ARE THE PEOPLE MOST LIKELY TO BE INTERVENTIONS. SO IF WE CREATE PSYCHOMETRIC PROPERTIES FOR ONE SAMPLE BUT THOSE AREN'T THE PEOPLE IN OUR INTERVENTION, WE HAVE DONE A DISSERVICE. AND MY LAST POINT IS THAT WE REALLY NEED, WHEN WE CREATE THESE MEASURES, WE NEED TO REALLY THINK ABOUT THE DIVERSITY OF OUR SAMPLES. RIGHT NOW, FOR EXAMPLE, IF WE ARE DOING WORK ON LANGUAGE, WE HAVE VIRTUALLY NO MEASURES OF LANGUAGE THAT ARE PSYCHOMETRICALLY VALIDATED IF ARE SPANISH SPEAKERS, AS ONE EXAMPLE. AND THAT MEANS THAT THESE PEOPLE ARE CUT OUT OF TREATMENT TRIALS AND THEREFORE THAT HURDLE OUR SCIENCE. IT ALSO HURTS THEM IN TERMS OF ACCESS TO BENEFITS. DIVERSITY IS JUST AN ABSOLUTELY CRITICAL THING WHEN WE ARE TALKING ABOUT OUTCOME MEASURINGS. I'M SORRY TO GO OVER A LITTLE BIT BUT THAT'S IT FOR ME. THANK YOU. >>HELEN TAGER-FLUSBERG: THANK YOU, LEN. YOU BROUGHT UP SO MANY IMPORTANT POINTS AND REALLY REMINDED US HOW CHALLENGING IT IS TO WORK ON OUTCOME MEASURES THAT ARE GOING TO BE MEANINGFUL FOR THE FULL RANGE OF PEOPLE WHO NOT ONLY ARE BUT REALLY SHOULD BE IN OUR INTERVENTIONS RESEARCH. THANK YOU VERY MUCH. I'M GOING TO TURN THE FLOOR BACK TO CONNIE WHO IS GOING TO INTRODUCE OUR NEXT SESSION. >>CONNIE KASARI: MOVING RIGHT ALONG. WE ARE DOING WELL ON TIME SO THIS IS GREAT. SO, I WANT TO MAKE A COMMENT ABOUT SO FAR, WE HAD THIS VERY RICH DISCUSSION YESTERDAY AND TODAY. AND FROM PRACTITIONERS AND CLINICIANS, FROM RESEARCHERS AND FROM PARENTS OF MINIMALLY VERBAL AND OFTENTIMES WITH CO-OCCURRING INTELLECTUAL DISABILITY. THAT IS A REALLY IMPORTANT VOICE. THE PARENTS ARE REALLY A SECOND VOICE. THEY ARE SPEAKING FOR THEIR CHILDREN OR ADULTS WHO CANNOT SPEAK FOR THEMSELVES. WE HAVEN'T HEARD AS MUCH FROM PEOPLE WHO ARE SPEAKING IN FIRST VOICE. SO WE ARE VERY PLEASED THAT WE HAVE TWO SPEAKERS TODAY WHO ARE BEING VERY COURAGEOUS IN HAVING A CONVERSATION THAT IS MODERATED BY A VASE VASE WHO HAS BEEN SPENDING HIS -- SARAH SANDERS JASER -- WHO HAS BEEN SPENDING HIS TIME WITH THESE INDIVIDUALS. -- VICK RAM JASWALL. I SPENT A BIT OF TIME WITH GRANT BLASCO AND GEORGE ZIMMERMAN. I'M THRILLED THEY ARE HERE TO TALK. WE ARE GOING TO START WITH A FEW MINUTES FROM JORDYN WHO DIDN'T SPEAK YESTERDAY BY HERSELF. SHE WILL SPEAK FOR A FEW MINUTES AND THEN VICK RAM WILL MODERATE A CONVERSATION BETWEEN THE THREE OF THEM. SO THIS IS REALLY IMPORTANT AND WE ARE REALLY HAPPY THAT YOU'RE HERE. JORDYN? >>HI, EVERYONE. I'M GEORGE ZIMMERMAN. THROUGH VISUAL ACCESS I'M A WHITE WOMAN WITH WAVY BROWN HAIR. I'M WARING A GREEN BLOUSE AND SITTING IN FRONT OF TWO FLORAL PAINTINGS. I COMMUNICATE BY TYPING LETTER BY LETTER ON AN iPAD WHICH THEN SPEAKS MY WORDS ALLOWED. THANKS TO THE CO-CHAIRS FOR HAVING ME PARTICIPATE IN THIS WEBINAR. NOW, BEFORE WE GET INTO THE CONVERSATION ASPECT THIS DISCUSSION, I'M GOING TO SHARE MY OWN LIVED EXPERIENCE AS A NON-SPEAKING AUTISTIC PERSON WHO HAS BEEN CALLED SEVERE AND PROFOUND AND WILL INCLUDE RESEARCH RECOMMENDATIONS FOR CONSIDERATION. WHILE I'M EXTREMELY HONORED TO SHARE WITH ALL OF YOU, I WANT TO POINT OUT THAT AN ESTIMATED THIRT-40% OF THE MORE THAN 5 MILLION AUTISTIC PEOPLE LIKE MYSELF IN THE UNITED STATES, ALSO RELY ON COMMUNICATION SUPPORT. BUT MOST DON'T HAVE IT AS WAS SAID YESTERDAY. I'M ONLY ONE SPEAKING AUTISTIC PERSON AND WHILE WE MAY HAVE SOME THINGS IN COMMON, I CAN ONLY SHARE MY EXPERIENCE ALONE AND DO NOT AND CANNOT CLAIM TO REPRESENT MORE THAN A MILLION OTHERS. AS A YOUNG KID, I WAS PUT ON A PATH OF SEGREGATION. PLACES SEEMED TO ASSUME THAT BECAUSE I COULDN'T COMMUNICATE RELIABLY WITH SPEECH AND HAD WHAT THEY REFERRED TO AS CHALLENGING BEHAVIORS THAT THEY DIDN'T NEED TO MAKE SPACE FOR ME. BUT AS I WERE, LEGALLY, I HAD EVERY RIGHT TO BE INCLUDED IN MY SCHOOL AND COMMUNITY. ACCESS TO RELIABLE COMMUNICATIONS SHOULD HAVE BEEN PROVIDED TO ME BUT IT SHOULD NOT HAVE BEEN -- TO LEARN, PLAY OR THRIVE. AS GRANT SHARED DURING THE STAKEHOLDER PANEL YESTERDAY, AND WHICH I RELATED TO THIS LACK OF COMMUNICATION CAUSED A VICIOUS CYCLE OF TRAUMA WHICH IS IMPACTED ME DEEPLY. THIS IS ALL ONE REASON RESEARCHERS MUST PRIORITIZE COMMUNICATION SUPPORT FOR YOUNG CHILDREN WHO NEED IT AS EARLY AS POSSIBLE AND PUSH LEGISLATION THAT INCREASES INCLUSIVE PRACTICES, WHILE DECREASING SEGREGATION. LATER, I RECEIVED AN IQ SCORE OF 61. THE ASSUMPTIONS YOU SHOULD LYING MY IQ SCORE HAVE SUCH A NEGATIVE IMPACT ON PEOPLE'S PERCEPTIONS OF ME AS WELL AS MY PERCEPTION OF MYSELF. PROFESSIONALS TALKED AROUND ME THINKING I DIDN'T UNDERSTAND. WHILE THERE IS NOTHING SHAMEFUL ABOUT THE IQ SCORE THEY WERE CONVEYING TO ME I WAS A FAILURE IN SOCIETY BECAUSE OF MY POOR MOTOR SKILLS AND APPROXIA. I BELIEVE RESEARCHERSES MUST PRIORITIZE POLICIES THAT MAKE SURE IQ TESTS ARE NOT GIVEN TO PEOPLE WHO DO NOT HAVE ACCESS TO RELIABLE OR EFFECTIVE COMMUNICATION AM WE MUST CONSTANTLY REMEMBER THAT SPEECH IS A MOTOR FUNCTION NOT A COGNITIVE FUNCTION. WHEN WE USE WORDING THAT DEGRADES, SUCH AS SEVERE, NON COMMUNICATIVE, COMPLEX, PROFOUND AND CHALLENGING, WE PAINTED A PICTURE OF PEOPLE AND INADVERTENTLY EVOKE FEAR WHETHER OR NOT THAT IS THE INTENTION. THIS PLAYS A ROLE IN SEGREGATING AND DEI NOOING ACCESS TO ROBUST COMMUNICATION. WE NEED TO TALK ABOUT THE SERVICES AND SUPPORTS PEOPLE NEED AND MAY BENEFIT FROM. IN THE LAST 18 POCKETS I GRADUATED FROM BOSTON COLLEGE WITH MY MASTERS IN EDUCATION AND STARTED MY FIRST OFFICIAL JOB. I HAVE BEEN FEATURED IN A DOCUMENT CALLED, THIS IS NOT ABOUT ME. AND I COCREATED AND WAS FEATURED IN, LISTEN, A SHORT FILM ABOUT NON-SPEAKING AUTISTIC PEOPLE. I SERVE ON THE BOARD OF DIRECTORS OF THE NATIONAL CIVIL RIGHTS ORGANIZATION COMMUNICATION FIRST AND HAVE KEYNOTED SEVERAL CONFERENCES. I WAS APPOINTED BY PRESIDENT BIDEN TO THE PRESIDENT'S COMMITTEE FOR PEOPLE WITH INTELLECTUAL DISABILITIES. NONE OF THIS MEANS I DON'T NEED AND RELY ON HIGH QUALITY SUPPORT EACH DAY. YET, NONE OF THESE ACTIVITIES WOULD BE POSSIBLE IF I HADN'T BEEN GIVEN ACCESS TO ROBUST POLICY. EVEN BE THOUGH I NOW HAVE ACCESS TO -- MY VOICE STILL IS OFTEN QUESTIONS OR DISREGARDED BY PROFESSIONALS. IN THE CONTEXT OF PLANNING THIS VERY WEBINAR AS A FELLOW COMMITTEE MEMBER, IT WAS DIFFICULT FOR RESEARCHERS WHO ARE EXPERTS ON PEOPLE LIKE ME, TO MAKE SPACE FOR ME. THIS IS WHY ACCESS TO THIS ALONE IS NOT ENOUGH. WHETHER YOU ARE RESEARCHERS OR FAMILY MEMBERS, YOU MUST SUPPORT OUR RIGHT TO COMMUNICATE ABOUT OURSELVESES AND OUR NEEDS IN THE WAYS THAT WORK BEST FOR US. >>THANK YOU JORDYN FOR THOSE COMMENTS. I'M SO HAPPY TO BE THE LUCKY PERSON WHO GETS TO MODERATE THIS CONVERSATION BETWEEN JORDYN AND GRANT. JORDYN, I SEE A LOT OF OVERLAP WITH SOME OF THESE EXPERIENCES AND POINTS THAT GRANT RAISED IN HIS COMMENTS YESTERDAY. BUT I WANT TO FIRST PICK UP ON THAT POINT THAT YOU HAD AT THE END OF YOUR PRESENTATION. YOU MENTIONED THAT, AND I WANT TO MAKE SURE I GET THE WORDS RIGHT. PLANNING THIS WEBINAR AS A FELLOW COMMITTEE MEMBER IS DIFFICULT FOR RESEARCHERS WHO ARE EXPERTS ON PEOPLE LIKE ME TO MAKE SPACE FOR ME ON ZOOM. AND THIS REMINDED ME OF A POINT THAT LEN MADE YESTERDAY THAT THE EXPERTS ON THIS VERY TOPIC, MIGHT NOT HAVE MUCH IN THE WAY OF EXPERIENCE INTERACTING WITH AND THINKING ABOUT HOW BEST TO INCLUDE PEOPLE THEY ARE SUPPOSED TO BE EXPERTS ON. LET ME START WITH A QUESTION FOR THE BOTH OF YOU WHICH IS, WHAT ARE SOME WAYS THAT FUTURE WORKSHOPS, CONFERENCES, WEBINARS AND SPACES HOSTED BY NIH AND OTHERS, COULD BE MADE MORE ACCESSIBLE, WELCOMING AND INCLUSIVE FOR AUTISTIC AAC USERS? JORDYN DO YOU WANT TO START? >>JORDYN ZIMMERMAN. >>SURE. A LOT OF AGENCIES SUCH AS NIH PUT UP BEAUTIFUL GUIDELINES FOR HORSTING INCLUSIVE AND ACCESSIBLE EVENTS. I SUGGEST PROVIDING CONTENT IN ADVANCE AND HAVING A SLOWER STREAM OF SPEAKING. TO ALLOW FOR MORE THINKING AND ENGAGEMENT DURING THE DISCUSSION PERIOD. BREAKS ARE ALSO A GOOD IDEA TOO. >>YES. SOME OF US HAVE SLIPPING OUT BY TURNING OFF OUR CAMERAS. GRANTER, DO YOU HAVE SOME THOUGHTS YOU WANT TO ADD TO ACCESSIBILITY ISSUES? >>SORRY WE HAVE A VOLUME ISSUE. >>GRANT BLASCO: I WILL LET ATTITUDES AND LISTENING ARE SO IMPORTANT. I ONLY AGREED TO PARTICIPATE AFTER I GOT -- WITH THE COORDINATORS. AND ESTABLISHED A RELATIONSHIP HELPS. WITHOUT THESE ACCOMMODATIONS, WE ARE AT A DISADVANTAGE. WE LIMIT EXPOSURE TO THE MEETING FORMAT AND WE HAVE NOT TIME TO DIGEST THE SCIENCE WITHOUT MATERIALS AHEAD. IT TAKES LONGER TO TYPE SO IT IS HIGHLY UNLIKELY WE WILL BE ABLE TO TIMELY WITH THE CONVERSATION. IT CREATES STRESS WHICH CAN LEAD TO -- WHICH CAN ENFORCE THE IDEA WE ARE NOT EQUIPPED TO PARTICIPATE. IF WE HAVE THE OPPORTUNITY TO PLAN WELL, WE WOULD BE FINE. >>YES, THANK YOU FOR THAT. I MEAN, ONE OF THE THINGS THAT WAS BROUGHT UP YESTERDAY OF COURSE IS THAT KIND OF ACCOMMODATIONS THAT PEOPLE DEAL WITH PROBABLY WOULD BE HELPFUL TO ALL OF US TOO, MATERIALS IN ADVANCE, TAKING A BREAK IN A 4-HOUR CONVERSATION. >>ONE THING TO THAT AND SAY I WORK SO HARD TO BE SEEN AS -- AND I APPRECIATE THE TIME WE HAVE BEEN GIVEN. I WOULD ADD ONE THING TO THAT AND SAY I GIVEN. >>THANKS, GRANT. I'M GOING SKIP TO A QUESTION STILL IN THE ACCESSIBILITY KIND OF FRAME. MY SENSE FOR MY CONVERSATIONS WITH THE BOTH OF YOU AND SOME OF THE THINGS YOU SHARED YESTERDAY AND TODAY IS THAT PEOPLE MAY NOT OR DO NOT, CANNOT, REALLY APPRECIATE THE FACT THAT IN ALMOST EVERY SETTING YOU FIND YOURSELF IN, PARTICIPATION IS A CHALLENGE FOR SOMEBODY WHO COMMUNICATES USING AAC OR SOMEBODY WHO DOESN'T YET HAVE A WAY TO COMMUNICATE. BOTH OF YOU HAVE SHARED THE TRAUMA THAT LARK OF ACCESS TO EFFECTIVE COMMUNICATION AND LACK OF UNDERSTANDING BY, OF WHAT IS NEEDED FOR SOMEBODY TO BE ABLE TO COMMUNICATE, EFFECTIVELY, CAUSES. SO GRANT, YOU SAID YESTERDAY, IF YOUR TRAUMA IS AROUND YOUR DAILY INABILITY TO COMMUNICATE COMBINED WITH ADD ATTITUDINAL AND SYSTEMIC BARRIERS, THE LIKELIHOOD OF BEING TRIGGERED SAID HIGH. WHICH TAKES A ENORMOUS TOLL ON YOUR PHYSICAL, EMOTIONAL AND MENTAL HEALTH. AND JORDYN YOU MENTION THE YOUR REMARKS IN YOUR DOCUMENTARY ABOUT YOU THAT DESCRIBED SOME OF THESE ISSUES THAT YOU HAVE THAT IS LINKED FOR THE AUDIENCE MEMBERS AND THE SPEAKER AGENDA AT THE BOTTOM. I WONDER IF IT'S NOT TOO PERSONAL A QUESTION, MAYBE IF YOU EACH COULD SHARE AN EXAMPLE OR STORY TO ILLUSTRATE JUST HOW SIGNIFICANT THIS ISSUE IS. GRANT, DO YOU WANT TO START? >>A PLASMODUIM FALCIPARUM: SURE, I HEARD A ELEC BEATURE THAT TALKED ABOUT NAVIGATION. I EXPLAINED THE DRIVE. SORRY THE DEAL WITH DAYS PARITY OF MY PERCEIVED OYST IDENTITY IN DIFFERENT SPACES. SKILLS TO REMAIN FLEXIBLE AND REGULATED IN THE FACE OF CONSTANT - AFTERNOON EXTENSIVE AS YOU MIGHT IMAGINE. FOR INSTANCE I WASES IN IAP MEETINGS AS A METAL SCHOOL AGED STUDENT WHERE ADULTS MIGHT BE THERE TO TALK ABOUT MY DEFICITS. THE PRESSURE WAS SO GREAT. ONLY AFTER THEY WERE SATISFIED WOULD I GET THAT GENERAL EDUCATION. NOW, I CAN NAVIGATE A METING WITH A PROFESSOR WHERE I CAN COME ACROSS AS A CREDIBLE COLLEGE STUDENT. THAT HELPS ME FEEL NORMAL EACH THOUGH SUCCESSFUL MEETING TAKES SO MUCH STAMINA AND FOCUS. LATER I CAN WALK INTO A HOSPITAL WHERE I AM OFFERED A HIGH-FIVE BY MEDICAL ASSISTANT WHO DID NOT READ MY CHART AND THEN INSTANTLY -- I CAN WALK INTO A RESTAURANT AND MOVE SLIGHTLY DIFFERENTLY THAN OTHERS AND THE RESULT WILL BE THAT I'M GIVEN A PLASTIC CUP WHILE OTHER PEOPLE GET GLASSWARE. THE POINT IS I CANNOT CONTROL OTHER PEOPLE'S IGNORANCE BUT I STILL NEED TO DEAL WITH IT DAILY DAILY. >>RIGHT. AND JORDYN? YOU HAVE AN EXPERIENCE YOU'D LIKE TO SHARE? >>JORDYN ZIMMERMAN: YES, A LOT OF THIS IS ILLUSTRATED IN THE FILM, HOW FAR, I CAN DEFINITELY EXPAND MORE -- HEREAFTER. THE DAILY -- GRANT DESCRIBES VERY TRUE. I GOT ACCESS TO ROBUST POLICY WHEN I WAS 18 YEARS OLD. UNFORTUNATELY, MY SPECIAL EDUCATION TEACHER USED MY iPAD TO TYPE IN CRUDE JOKES ABOUT MY APPEARANCE AND THEN WOULD PLAY THEM AS IF THEY WERE MY WORDS. WHEN I WENT TO COLLEGE, MY WORTH WAS CONSTANTLY QUESTIONED. ALMOST DAILY, I WAS ASKED IF I WAS REALLY A STUDENT ON CAMPUS. EVEN NOW ON SOME DAYS, THE DAILY BUILDUP BECOMES SO MUCH I'M UNABLE TO STAY REGULATED IN ON THOSE DAYS IT CAN BE DIFFICULT TO COMMUNICATE MY NEEDS. I GET INTO A SET WHERE I BANG MY HEAD UNTIL IT'S BRUISED AND CUT. I KNOW ON THOSE DAYS, PEOPLE ARE QUESTIONING MY WORTH EVEN MORE. >>ONE OF THE THINGS I HAVE LATER AS A QUESTION FOR YOU BOTH HAS TO DO WITH WAYS IN WHICH WE CAN, AS RESEARCHERS AND AS A COMMUNITY, HELP TO POSSIBLY REDUCE SOME OF THAT TRAUMA. BUT BEFORE WE GET TO THAT POINT, THESE ARE REALLY SERIOUS ISSUES AND I KNOW THAT YOU BOTH ARE IN THE PAST HAD TO DEAL WITH THESE SERIOUS EFFECTS THESE HAD ON YOUR PHYSICAL, MEANTAL AND EMOTIONAL HEALTH. BUT YOU ALSO SHARED WITH ME HILARIOUS EXAMPLES IN RETROSPECT OF WHERE PEOPLE DON'T KNOW HOW TO PROCESS YOU OR THE WAY THAT YOU COMMUNICATE. NOW IN RETROSPECT YOU CAN LAUGH ABOUT THEIR IG NOWHERES. I WONDER IF YOU CAN SHARE AN EXAMPLE OF THAT. GRANT WHY DON'T YOU START? >>GRANT BLASCO: I THINK I CAN PUT IT THE FIRST QUESTION. [ TYPING ] I THINK I CAN PREDICT THE FIRST QUESTION I WILL GET AFTER ANY PRESENTATION. I KNOW WHAT ARE YOU USING? >>SO, AFTER YOU'RE AMAZING CONTENT THE FIRST QUESTION IS, WHAT APP ARE YOU USING? >>THE TRUTH IS I DON'T HEAR ABOUT THE TECHNOLOGY. [ TYPING ] THE TRUTH IS I DON'T CARE ABOUT THE TECHNOLOGY. THERE IS TOO MUCH TO WORRY ABOUT FOR SUCCESSFUL COMMUNICATION. >>I'M GOING TO MOVE ON TO ANOTHER QUESTION IN THE INTEREST OF TIME. BEATING OF YOU WORK TIRELESSLY IN SPACES TO ADVOCATE ON BEHALF OF NON-SPEAKING AUTISTIC FOLKS. INCLUDING THOSE WHO DON'T YET HAVE A CONVENTIONAL LANGUAGE BASE WAY TO COMMUNICATE EFFECTIVELY. JORDYN, YOU MENTIONED THAT YOU HAD A DIRECTOR OF PROFESSIONAL DEVELOPMENT AND YOU'RE CHAIR OF THE BOARD AT COMMUNICATION FIRST. AND GRANT IS ON THE COMMUNICATION FIRST ADVISORY BOARD AND A NUMBER OF NYU'S ADVISORY BOARD FOR PROGRAM FOR INCLUSION OF NEURODIVERSITY EDUCATION. THIS IS A HARD QUESTION. BUT WHAT DO YOU SAY TO FOLKS WHO MAY FEEL LIKE THE FACT THAT YOU NOW HAVE ACCESS TO COMMUNICATION AND YOU CAN ADVOCATE ON BEHALF OF YOURSELF AND OTHERS, MEANS THAT YOU DON'T UNDERSTAND THE CHALLENGES THAT INDIVIDUALS WHO STILL DON'T HAVE ACCESS TO COMMUNICATION HAVE. THAT MAYBE YOU DON'T OR HAVE NEVER HAD SIGNIFICANT CHALLENGES; ALLUDED TO SOME OF THESE EARLIER. DO YOU WANT TO EXPAND ON ANY OF THEM? [ TYPING ] >>SURE. IN THE DOCUMENTARY THAT WAS PREVIOUSLY MENTIONED, THERE IS IT A PROFESSIONAL THAT STARTS OFF BY TALKERRING ABOUT HOW I WAS ONE OF THE MOST QUOTE, CHANNELING, UNQUOTE STUDENTS SHE EVER WORKED. AS SHARED DURING THE DISCUSSION YESTERDAY, AUTISM IS A DEVELOPMENTAL DISABILITY. HOW I MAY PRESENT IN THIS MOMENT OR HOW I PRESENT 10 YEARS AGO DOES NOT DISMISS MY RIGHT TO AUTONOMY THEN OR THE SUPPORT I NEED TODAY. WE MUST ALL WORK TOGETHER. >>THANK YOU. THAT'S A REALLY -- THE DOCUMENTARY IS A REALLY POWERFUL ONE. WE ARE REALLY RUNNING OUT OF TIME AND AS WE TALKED ABOUT BEFORE, I WISH EVERYBODY COULD HAVE BEEN A PART OF THE HOURS OF CONVERSATIONS WE HAVE BEEN ABLE TO HAVE OVER THE LAST COUPLE OF WEEKS WITH CONNIE TOO. SO I JUST WANT TO GIVE US MAYBE ONE OR TWO MINUTES SO BOTH GRANT AND JORDYN, YOU'LL HAVE TO KEEP IT QUICK, BUT THE LAST QUESTION JUST TO CLOSE THE LOOP REGARDING COMMUNICATION INTERVENTION, SPECIFICALLY, WHAT IS ONE MESSAGE YOU WOULD LIKE TO LEAVE THIS AUDIENCE OF THE NIDCD FOLKS AND THE FOLKS LISTENING TO THE WEBCAST WITH AS THEY ATTEMPT TO SET THE AGENDA FOR THE NEXT 10 YEARS OF RESEARCH WITH NON-SPEAKING OR MINIMALLY VERBAL FOLKS. GRANT DO YOU WANT TO START? [ TYPING ] I WANT TO SHARE A RESPONSE. EVEN NOW I STRUGGLE TO GET OUT EVERYTHING I WANT TO SAY AND I PAIN TO GET OUT FOR OTHERS BECAUSE I'M AWARE THE FAMILIES ARE IN PAIN BUT THAT ALSO MAKES ME A TARGET. I HAVE SO MUCH TO LOSE SO WHY DO I DO THIS? SOME DAYS I DON'T KNOW. UNDERSTAND MY FEELINGS OF BEING ALONE WITH MY LACK OF UNDERSTANDING OF MY DIAGNOSIS AND MIGRAINE HEADACHES AND INVOLVEMENTITTING AND SELF INJURY. I HAVE SEIZURES AND I GO DAYS WITHOUT SLEEP DUE TO STRESS. BEFORE I COULD COMMUNICATE, I COPED MY -- GREAT AMOUNTS OF NUDES IN THE PANTRY AND FRIDGE DOWN DRAINS AND FLUSHED MOM'S FAVORITE NECKLACE DOWN THE TOILET. I COULD GO ON. THE MARK OF DIFFERENCE WAS BEING EDUCATED ABOUT HOW AUTISM CAN IMPACT SOMEONE AND LISTENING TO OLDER AUTISTIC PEOPLE EXPLAIN HOW THEY COPE. I KNOW WE ARE ALL DIFFERENT. WHEN I HEAR PARENTS EXPLAIN THEIR CONCERN USED KIDS WORDS OVER AND OVER REMINDED ME I DID THE SAME THINGS BEFORE I HAD THE INFORMATION THAT PUT ME IN A PLACE OF SEEING LOGICAL. I DON'T WANT ANYONE TO THINK I'M SHAMING PARENTS. BUT, I HAVE EXPERIENCED PAIN TOO. I HAVE FRIENDS WHO CANNOT STAND SO THEIR HOMES WERE DARK AND I WENT THROUGH A STAGE WHERE I HAD TO UNPLUG EVERY ELECTRICAL APPLIANCE AND LAUGH BECAUSE I WAS HEAR THE BUZZING. MY HOPE IS TO HELP OTHERS SO MAYBE ONE PERSON CAN TALK ABOUT AUTISM WITH A LOVED ONE AND FIND SOME PEACE. THAT IS MY HOPE BUT I KNOW I AM NOT THE EXPERT OF PEOPLE I HAVE NEVER MET. JUST LIKE PEOPLE WHO HAVE NEVER SPENT A DAY WITH ME DO NOT UNDERSTAND HOW I OVERCOME SOME ISSUES BUT I'M STILL WORKING ON MANY TOO. WE SHOULD HAVE EMP THY THEE FOR EACH OTHER AND TRADE IDEAS BECAUSE THIS STUFF IS NOT EASY FOR ANY OF US. >>WOW, THANK YOU, GRANT. JORDYN, LAST COMMENT FOR THE GROUP. AND OF COURSE BOTH OF YOU WILL HAVE THE OPPORTUNITY TO PARTICIPATE IN THE DISCUSSION AS WE ALL WILL; WHICH IS HAPPENING SHORTLY. >>DYNAMIC HUMANS. COME OUT OF YOUR LABS. WE CAN ATAFT TO FULLNESS AS PEOPLE. -- ATTEST TO OUR FULLNESS AS PEOPLE. >>THANK YOU BOTH FOR A FANTASTIC END OF THE FULL DISCUSSION OF OUR -- OR PRESENTATIONS AND I'LL TURN BACK OVER TO CONY AND HELEN AND JUDITH FOR THE FINAL DISCUSSION. THANK YOU AGAIN GRANT AND JORDYN JORDYN. >>CONNIE KASARI: I CAN DEFINITELY ATOAST YOUR FULLNESS, JORDYN. I WILL SAY I SPENT A FEW HOURS WITH JORDYN AND WITH GRANT AND WITH VICK RAM OVER THE LAST FEW WEEKS. AND I WOULD SAY, AND YOU CAN CORRECT ME IF I'M WRONG, BUT I THINK SOME OF THE QUESTIONS YOU COULD PREPARE BEFOREHAND, RIGHT, GRANT AND JORDYN? SO THAT'S WHY WE HAD THESE LONG STRINGS OF PRODUCTION. AND IN OTHER TIMES YOU WERE RESPONDING IN REALTIME. AND I KNOW THAT WHEN WE HAD OUR CONVERSATIONS, IT WAS ALL IN REALTIME. SO I CAN DEFINITELY ATTEST TO NOT ONLY THE FULLNESS OF YOU AS HUMANS BUT ALSO YOUR SENSE OF HUMOR. YOU BOTH ARE VERY, VERY -- YOU BOTH HAVE A GREAT SENSE OF HUMOR. AND I REALLY APPRECIATED THAT. AND YOU ALSO KNOW THAT I'VE WORKED MOSTLY WITH MINIMALLY VERBAL CHILDREN WHO GROW UP. AND WE DON'T ALWAYS AS RESEARCHERS GET TO FOLLOW PEOPLE UP INTO ADULTHOOD. IT'S A REAL DISADVANTAGE TO US TO SEE HOW SOME OF OUR MINIMALLY VERBAL YOUNG CHILDREN GROW UP TO BE ADULTS. I HAVE A COUPLE OF KIDS THAT WERE IN STUDIES THAT ARE NOW IN COLLEGE, LIKE YOU GUYS. AND OTHERS THAT HAVE REALLY SIGNIFICANT NEEDS. AND AROUND THE CLOCK THEY NEED CARE. SO THERE IS THAT HETEROGENEITY. AND I THINK WE HAD A REALLY RICH DISCUSSION FROM BOTH OUR PARENTS AND OUR INDIVIDUALS WHO ARE INDEPENDENT TYPERS. AND YOU GUYS, I HAVE TO SAY, YOU'RE AMAZING AND I AM IN AWE OF YOUR COURAGE AND EFFORTFUL CONTROL THAT IT TAKES TO DO WHAT YOU DO EVERY DAY. AND IN FACT, A QUESTION I HAVE FOR YOU IS, MY GOODNESS, HOW DO YOU -- WHAT IS YOUR WORKDAY LIKE, JORDYN? I MEAN WE ARE SITTING HERE IN THIS ZOOM CONTEXT WITH NO BREAKS FOR 4 HOURS AND I'M EXHAUSTED. I HAVE TAKE A NAP AFTERWARDS. SO I CAN'T IMAGINE DOG THIS KIND OF WORK THAT YOU DO -- DOING THIS KIND OF WORK THAT YOU DO AND WORKING A FULL DAY. I DON'T THINK I CAN DO IT. HOW DOES THAT WORK FEDERAL YOU? HOW DOES THAT WORK FOR YOU? >>JORDYN YOU'RE MUTEED. >>I THINK SHE IS STILL MUTED. THERE WE GO. >>I DON'T HAVE FOUR HOUR MEETINGS. EVEN YOUR DOG WAS BARKING IN DISAGREEMENT ABOUT THIS YESTERDAY. [ LAUGHS ] >>LIKE I SAID, THEY HAVE A GREAT SENSE OF HUMOR! YES, IN FACT JORDYN DID ASK ME WHAT KIND OF DOG I HAD BECAUSE SOMEHOW SYBIL POPPED UP INTO THE VIEW. AND THEN GRANT, I KNOW THAT YOU'RE A COLLEGE STUDENT AND YOU KNOW, I'M TEACHING AN UNDERGRADUATE CLASS RIGHT NOW THAT STARTS AT 8 A.M. AND HAS TO BE IN-PERSON. AND I DON'T TAKE ATTENDANCE. SO FIRST DAY EVERYONE WAS THERE. OVER 100 STUDENTS. SECOND TIME, HALF BECAUSE 8 A.M. IS WAY TOO EARLY. SO MY QUESTION TO YOU IS, DO YOU HAVE TO GO TO CLASS IN-PERSON OR ARE YOU ON LINE? ONLINE IS SO MUCH EASIER BUT I DON'T KNOW WHAT YOU DO. [ TYPING ] I DO BOTH AND I PREFER IN-PERSON BECAUSE I WANT TO BE A PART OF THE ACTIVITIES OF REGULAR STUDENTS. >>THAT'S GREAT. YOU WOULD GET AN A IN MY CLASS. I CAN SEE YOU DOING GREAT AND I WOULD LOVE TO HAVE YOU. LET'S SEE, DO WE HAVE ANY QUESTIONS FROM JUDITH FROM OUR PARTICIPANTS BEFORE WE MOVE TO -- NEXT SESSION WHERE I'M HOPING THAT JEERED IN AND GRANT CAN PARTICIPATE -- OR MAYBE YOU GUYS HAVE SOMETHING YOU WANT TO ADD, JORDYN AND GRANT? YES, THEY DO. >>GRANT BLASCO: NO THANKS. >>JORDYN: ME EITHER. >>CONNIE KASARI: OKAY, WELL GREAT. WHAT WE WERE GOING TO DO -- HELEN HAS SOMETHING. >>A FLORIDA'S FLORIDA'S: I WANT TO MAKE A COMMENT HERE: HELEN TAGER-FLUSBERG -- I REALLY ADMIRE YOUR COURAGE JORDYN AND GRANT. IT ISN'T EASY TO PUT YOURSELF OUT THERE THE WAY YOU DO. YOU HAVE IN THE PAST AND YOU ARE HERE AND I REALLY APPRECIATE THAT. I ALSO WANT TO SAY, OBVIOUSLY YOUR LANGUAGE AND COMMUNICATION SKILLS ARE WHAT WE ASPIRE TO FOR THE MINIMALLY VERBAL AND NON-SPEAKING POPULATION. YOU ARE ABLE TO COMMUNICATE. AND WE KNOW THAT FOR MOST INDIVIDUALS, THEY ARE NOT GOING TO BE ABLE TO REACH YOUR ASPIRATIONAL STATUS. AT THE SAME TIME, I THINK WHAT I HAVE TAKEN AWAY FROM THIS AFTERNOON IS, YES YOU HAVE THAT CAPACITY BUT LOOK AT HOW HARD IT IS. IT IS STILL SUCH A CHALLENGE. AND I THINK YESTERDAY WE TALKED ABOUT THE NEEDS TO HAVE TECHNOLOGIES THAT WOULD CHANGE SO MANY OF THE FEATURES OF YOUR COMMUNICATION, TO MAKE IT FASTER, TO MAKE IT MORE EXPRESSIVE AND MORE, YES YOUR FIRST VOICE, BUT LET IT BE YOUR OWN VOICE. AND HOW ARE WE GOING TO BE ABLE TO GET THERE? SO I THINK YOU HAVE HIGHLIGHTED BOTH WHAT WE CAN ASPIRE TO AND ALSO WHAT WE NEED TO BE DOING AS A FIELD TO IN FACT, REALLY ALLOW YOU TO COMMUNICATE IN WAYS THAT I KNOW YOU WISH TO DO. AND THE STRESS AND THE TRAUMA THAT YOU TALK ABOUT, I THINK IT'S VERY EVIDENT TO ME TODAY, WATCHING YOU, THAT LISTENING TO YOU, WHY EACH THOUGH YOU CAN COMMUNICATE, THE STRESS IS JUST STILL SO ENORMOUS. IT MUST BE COMPOUNDED IN EVERYDAY LIFE. SO I REALLY JUST WANT TO THANK YOU FOR SHOWING ME AN ASPECT OF WHERE WE WANT TO BE THAT I HADN'T REALLY THOUGHT SO MUCH ABOUT BEFOREHAND. >>JUDITH COOPER: THANK YOU CONNIE AND JORDYN AND GRANT. WHAT A WONDERFUL PART OF THE AFTERNOON. SO, WE ARE MOVING NOW INTO WHAT IS NEXT, NEXT STEPS. DO NOT EXPECT THAT CONNIE AND HELEN AND I ARE GOING TO DO A SUMMARY OF WHAT WE HAVE LEARNED OVER THESE TWO DAYS. I WILL SAY THAT WHAT WE WANT TO HEAR FROM YOU IS, WE HAVE HEARD A COUPLE OF THEMES, OKAY? PARTICIPATORY RESEARCH. A LOT OF PEOPLE TALKED ABOUT THAT. TECHNOLOGY, CHANGES IN TECHNOLOGY. NON-TECHNOLOGICAL APPROACHES FOR MINIMALLY VERBAL. AND THEN THE HETEROGENEITY ISSUE. RECOGNIZING THAT WE ARE NOT THE MONLITHE THAT JOHN MENTIONED YESTERDAY. SO I'M GOING TO ASK EVERYBODY TO TURN THEIR CAM RAGS ON SO WE CAN SEE EVERYONE -- CAMERAS ON SO WE CAN SEE EVERYONE TO RAISE THEIR HANDS TO MAKE COMMENTS AND SUGGESTIONS ABOUT OTHER THEMES THAT YOU WOULD LIKE THOSE OF US WHO ARE LISTENING TO PAY ATTENTION. WE HAVE GOT BOTH YOU FOLKS ON THE SCREEN AND THEN THOSE ON THE WEBINAR WHO CAN AND HAVE BEEN SENDING FORTH COMMENTS. SO I THINK WE'LL -- CONNIE AND HELEN AND I WILL JUST SHARE CALLING ON FOLKS BUT WE'LL WAIT TO SEE WHO RAISES THEIR HAND. >>I ASSUMED WE WERE GOING ALPHABETICALLY. SO I WANT TO JUST MAYBE MAKE TWO COMMENTS. ONE IS IN REFERENCE TO LARRY'S EXCELLENT PRESENTATION ABOUT THE NEED FOR MULTIMODAL INTERVENTIONS. OR MULTICOMPONENT INTERVENTIONS. AND I WANT TO MENTION A COUPLE OF OTHER BENEFITS BECAUSE I THINK THIS IS THE WAY TO GO IN THE FUTURE. RECOGNIZING THAT THESE ARE EXPENSIVE INTERVENTIONS TO DO BUT I THINK THEY REALLY NEED TO BE DONE. IN MY OWN FIELD, WE HAVE DONE A MULTIMODAL INTERVENTIONS FOR INDIVIDUALS WHO HAVE FRAGILE X SYNDROME AS ONE EXAMPLE AND WE COMBINED MEDICATIONS WITH PARENT IMPLEMENTED INTERVENTIONS. THE TWO THINGS I WANT TO ADD TO LARRY'S EXCELLENT POINTS ARE, THAT THERE REALLY IS A CHALLENGE IN THE TYPICAL DRUG TRIAL WHERE YOU HAVE A PLACEBO CONDITION. SO FAMILIES COME TO THIS AND NO ONE WANTS TO BE IN THE PLACEBO. RIGHT? EVERYONE WANTS TO BENEFIT FROM THE MEDICATION. AND I THINK THAT THERE IS A COST TO FAMILIES IF THEY DON'T GET ANY TREATMENT. THAT IS IN TERMS OF TIME, EFFORT, HOPE AS WELL AS THE FACT THAT OFTEN THEY HAVE TO STOP OTHER MEDICATIONS AND THINGS LIKE THAT. AND SO I THINK HAVING AN ALTERNATIVE TO THE TRADITIONAL PLACEBO BEING TO GET A BEHAVIORAL INTERVENTION WITHOUT THE MEDICATION, IS REALLY BENEFICIAL AND I WOULD LIKE TO SEE US DO THAT, RECOGNIZING IT WILL COST MORE TO FUND THAT THROUGH THE NIH. SO THEN THE SECOND COMMENT AGAIN, MAYBE THIS IS PARTICULAR TO THE FRAGILE X FIELD. ONE OF THE CHALLENGES IN A LOT OF THE MEDICATION TRIALS IS THEY DON'T REALLY KNOW WHICH OUTCOME MEASURE TO PICK. WE THINK WILL WE WILL HAVE POSITIVE IMPACT ON COGNITION SO WE DO OUR BEST TO PICK THAT ONE PRIMARY OUTCOME MEASURE BUT IT IS OFTEN NOT WELL MOTIVATED. IF YOU PAIR A PARTICULAR KIND OF INTERVENTION WITH THAT, SORE PAIR A LANGUAGE INTERVENTION WITH THE MEDICATION, THEN HAVE A LANGUAGE OUTCOME MEASURE. IF YOU DON'T SEE ANY BENEFIT THERE YOU'RE NOT REALLY GOING TO SEE A BENEFIT IN THE MEDICATION. SO I JUST THINK THERE ARE LOTS OF WAYS TO REALLY BUILD ON THIS MULTIMODAL THING AND MAYBE THE LAST POINT I'LL SAY ABOUT THAT IS WE JUST DID A BIG -- WE HAVE DONE SEVERAL STUDIES WHERE WE FOUND THAT THE NO EFFICACY OF THE MEDICATION BUT THE BEHAVIORAL INTERVENTION WORKED WELL AND THEN WHAT A LOT OF PEOPLE TAKE FROM THAT IS WE NEED TO FOCUS ON MORE MEDICATIONS. THE FLIP SIDE OF THAT IS MAYBE WE NEED TO FOCUS ON BEHAVIORAL THERAPIES AND OTHER KINDS OF EDUCATIONAL INTERVENTIONS AND NOT PUT ALL OF OUR EGGS IN THE MEDICATION BASKET. THAT'S MY SOAPBOX BUT THANK YOU. >>JUDITH COOPER: THANK YOU, LEN, JANICE? >>JANICE LIGHT: I WANTED TO USE MY TIME TO ASK A QUESTION. JORDYN, I DON'T KNOW IF YOU'RE STILL THERE, AND GRANT, BUT I DON'T THINK YOU, AT LEAST JORDYN, GOT A CHANCE TO ANSWER THE QUESTION WE ALL HAVE BEEN ASKED. WHAT IS THE BIGGEST UNMET NEED, THE GREATEST RESEARCH PRIORITY? I THINK IT WOULD BE REALLY HELPFUL FOR US TO HEAR YOUR PERSPECTIVE ON THAT FROM YOUR LIVED EXPERIENCES. AND GRANT, YOU AS WELL. I KNOW YOU HAD A FEW MINUTES AT THE BEGINNING OF THE SESSION BUT I'D BE REALLY INTERESTED IN HEARING YOUR VIEWPOINTS ON THE RESEARCH PRIORITIES. >>JUDITH COOPER: I'M LOOKING AND JORDYN IS ON AND GRANT IS ON. SO MAYBE WE'LL LET JORDYN GO FIRST. [ TYPING ] L. ] [ TYPING ] I THINK INCLUSION IS AN INTERVENTION BUT MAYBE FULLY PLANNED INCLUSION. IT HAS TO BE DONE RIGHT AND THERE IS SAY LOT TO THIS. SEGREGATION IS NOTED AND IF WHY ARE GOING TO BE SERIOUS ABOUT TRAUMA, WE NEED TO THINK LONG AND HARD ABOUT THE HARM THAT HAPPENS IN SEGREGATED SPACES, PLANNED WITH UNRELIABLE COMMUNICATION. >>JUDITH COOPER: THANK YOU, JORDYN. GRANT, WOULD YOU LIKE TO -- ARE YOU READY? OR WE CAN WAIT FOR YOU. IT LOOKS LIKE YOU ARE PREPARING SO WE'LL WAIT UNTIL YOU'RE READY. ACCESSIBILITIESY IN SCHOOLS IS A HUGE NEED. -- ACCESSIBILITY -- I ECHO WHAT JORDYN IS SAYING. DR. LIGHT I'M A FAN. I WANT TO STUDY ETHNIC GRAPHICS AND SO MANY ASPECTS OF HOW ACC USERS MANAGE RESEARCH AND ACCESSIBILITY IN SCHOOLS IS A HUGE NEED. >>JUDITH COOPER: THANK YOU, GRANT AND JORDYN. OKAY, SO LET'S SEE, NEXT I THINK CATHY? >>HI, EVERYBODY. I THINK ONE OF THE THINGS I WANTED TO SECOND AND THIS IS PROBABLY MOSTLY DIRECTED TOWARDS JUDITH. BUT I THINK ONE OF THE ISSUES THAT WAS BROUGHT UP, IS THERE ANY WAY TO HAVE A SYSTEM THAT IS LIKE CANCER CENTERS, FOR EXAMPLE? I THINK IT CAN'T JUST BE THROUGH MEDICINE BECAUSE I THINK AS JORDYN AND GRANT JUST SAID, A LOT OF ISSUES DO ARISE THROUGH SCHOOL. BUT IS THERE A WAY TOO HAVE STANDARD PROTOCOLS THAT COULD BE SHARED WHERE PEOPLE THAT ARE CAPABLE OF CARRYING THESE OUT AGREE TO DO THIS. AND THEN ARE APPLIED TO DIFFERENT PEOPLE WHO NEED DIFFERENT THINGS. I THINK ONE OF THE THINGS I WAS STRUCK BY AND THIS IS PARTLY SAYING TO DANNY AND CONNIE. CONNIE HEARD ME SAY THIS BEFORE. BUT I THINK THE SMART DESIGNS ARE WONDERFUL EXCEPT SO FAR, I WANT TO KNOW WHO RESPONDED AT THE START AND WHO DIDN'T RESPOND AT THE START. NOT JUST WHAT CAUSED RESPONSES. AND WITHOUT HUGE NUMBERS WE JUST CAN'T FIGURE THAT OUT. AND ALSO JUST ADDRESSING THE HUGE HETEROGENEITY THAT WE SEE. SO IS THERE A WAY TO COORDINATE EFFORTS ACROSS SITES? AND FRAGILE X HAS DONE THIS. I THINK MORE THAN WE SEE IN TYPICAL AUTISM, BUT I THINK IT'S A HUGE EFFORT. BUT I THINK WE ARE ALL TRYING. AND IF WE COULD WORK TOGETHER, AND FIGURE OUT WAYS TO BE MORE INDIVIDUALIZED BUT TO BE SURE WE WERE GETTING ENOUGH PEOPLE IN DIFFERENT GROUPS THAT WE COULD ACTUALLY SEE WHAT WORKS FOR WHOM AND WHEN, IS ALSO THE OTHER ISSUE. BECAUSE I THINK -- I MEAN, LOOKING AT JORDYN AND GRANT, YOU GUYS ARE YOUNG ADULTS. WHAT WOULD BE DIFFERENT ABOUT DOING - WHAT WOULD WE DO WITH YOU AT 3, WHICH WOULD BE QUITE DIFFERENT TO HELP YOU AT 3 THAN AT 6? OR AT VARIOUS AGES. SO I JUST WANT TO PUT IN A PLEA FOR REALLY HIGHER ORDER SYSTEMS THINKING ABOUT HOW DO WE ADDRESS THE NEED FOR LARGER SAMPLES ACROSS HETEROGENEITY. SO NOT THE SAME THING FOR EVERYBODY. AND WAYS TO KEEP TRACK OF THAT. AND ALSO BACK TO LEN'S POINT, NOT THAT YOU HAVE A CONTROL OF YOU GET NOTHING VERSUS YOU GET THE THING THAT I MOST INVESTED IN. WE HAVE REASONABLE OFFERS OF THINGS TO EVERYBODY. >>JUDITH COOPER: THANK YOU, CATHY. JOE. >>YES, THANKS. I'M JOE. I'M A U.K.-BASED RESEARCHER AND AMAZING TOO BE HERE. SO INSPIRING. I FEEL LIKE A NEED A FEW DAYS TO DIGEST IT ALL NOW. I WANTED TO SAY I'M INTERESTED, LIKE MOST OF YOU, IN THE HETEROGENEITY OF TRAJECTORIES IN THIS POPULATION. AND THE NEED AS MANY PEOPLE BROUGHT UP, FOR HAVING A LONG TERM OBSERVATIONS OF PEOPLE SO WE CAN KNOW WHO CHANGES IN WHAT WAY AND MAYBE WHAT ARE THE CORRELATES OF THAT. AND THIS IS AT THE FRONT OF MY MIND BECAUSE I'M PLANNING A LONG TERM OBSERVATIONAL STUDY AT THE MOMENT AND DISCUSSING MEASURES. ONE OF THE QUESTIONS I HAVE AND I DON'T KNOW IF ANYONE CAN SHED ANY LIGHT ON THIS FOR ME, BUT IF I'M LOOKING AT A POPULATION STUDY WHERE EVERYONE STARTS MINIMALLY VERBAL OR NON-SPEAKING BUT THEY MAY CHANGE IN DIFFERENT WAYS IN TERMS OF OF THEIR COMMUNICATION SKILLS OVER THE PERIOD OF THE STUDY. IT'S HARD TO PUT MY FINGER ON A MEASURE THAT HAS ENOUGH SENSITIVITY TO COVER THE WHOLE RANGE OF POSSIBLE COMMUNICATE OUTCOMES. SO SOMETHING THAT MIGHT BE REALLY GOOD IN AN INTERVENTION STUDY WHERE WE SEE DIFFERENT AMOUNTED OF CHANGE IN A SHORT PERIOD, IT MIGHT NOT -- IT MIGHT HAVE BIG CEALING EFFECTS FOR THOSE WHO GO ON TO ACQUIRE PHRASE SPEECH AND MORE LANGUAGE. SO I JUST WAS WONDERING HOW PEOPLE THOUGHT ABOUT THAT AND IF MAYBE THE SOLUTION IS YOU JUST HAVE TO HAVE LOTS OF DIFFERENT MEASURES. THAT'S SOMETHING I'M JUST PONDERING AT THE MOMENT. >>JUDITH COOPER: I DON'T KNOW IF WE OUGHT TO OPEN IT UP TO RESPOND BECAUSE WE HAVE A LOT OF PEOPLE IN LINE WITH THEIR HANDS UP. BUT, MAYBE WE'LL COME BACK TO JO'S QUESTION AFTER WE TALK TO THESE PEOPLE WITH THE HANDS UP. STEPHEN? >>STEPHEN CAMARATA: I GO BACK TO THE TIME WHEN I FIRST ENCOUNTERED AUTISM. I WAS TRAINED IN PSYCHOTHERAPY. EVEN THEM I WAS SKEPTICAL. WE HAVE BEEN BLAMING THE PARENTS A LOT. ONE OF THE THINGS I REALLY WORRY ABOUT IS THAT WE DO IN FACT NOW, IT SHOULD BE A STANDARD OF CARE THAT WE PROVIDE PARENT SUPPORT AND PARENTS BECOME PARTNERS IN THE PROCESS. ON THE OTHER HAND, I THINK IT'S REALLY IMPORTANT THAT IN ADDITION TO UNDERSTANDING THE TRAUMA AND THE NEEDS THAT WE HEARD FROM OUR FIRST PERSON SPEAKERS AND SO PROFOUNDLY MOVED BY THAT. I THINK WE ALSO WANT TO UNDERSTAND DIFFERENT CAPACITIES OF PARENTS SO THAT IT'S NOT THE CASE THAT WE TRY TO HAVE THE PARENT BECOME A MINI-ME BEHAVIORAL THERAPIST. SOME CAN DO THAT. I HAVE PARENTS THAT WORK WITH SPEECH PASS. I HAD A FAMILY COME FROM MISSISSIPPI. MOM IS A SINGLE MOM. GRANDMA IS HELPING OUT. AND HER SON IS NON VERBAL, 6-YEAR-OLD. I HELPED HIM WITH AUGMENTATIVE AND HER COMMENT TO ME WAS, SHE COULDN'T REALLY UNDERSTAND AUGMENTIVE DEVICE AND THAT SHE FELT A LOT OF PRESSURE TO COMPLETE ALL THESE LESSONS. AND IT WAS JUST VERY DIFFICULT FOR HER. SO I THINK AS WE GO FORWARD, I THINK WE WANT TO BEAR THAT IN MIND. WE WANT TO THINK ABOUT OUR FIRST PERSON SPEAKERS IN TERMS OF ARE WE PUTTING UNREAL EXPECTATIONS ON THESE FOLKS? AND CERTAINLY THE NEURODIVERSE MOVEMENT HELPED US TO UNDERSTAND THAT BETTER. BUT WE ALSO WANT TO MAKE SURE WE ARE NOT REBLAMING THE MOTHERS. I THINK THERE IS ALREADY PLENTY OF GUILT TO GO AROUND AND WE WANT TO BE REALLY MINDFUL OF THAT AND WE WANT TO ANSWER THAT WITH DATA. SO GOING FORWARD, BIG PICTURE MEASURES, WE ALSO WANT TO UNDERSTAND WHERE WE CAN MEET PARENTS WHERE THEY ARE TO SUPPORT THEM IN THEIR JOURNEY. >>THANK YOU, STEPHEN. MATTHEW. >>THANKS. I WANT TO MAKE TWO POINTS BRIEFLY. NUMBER 1, WE TALKED A LOT ABOUT PARTICIPATORY RESEARCH. I THINK WE ALL AGREE ON THAT. BUT OUR GOAL OF COURSE IS TO DEVELOP THERAPEUTIC TECHNIQUES. IT CAN BE DEPLOYED TO IMPROVE QUALITY OF LIFE. AND PARTICIPATORY RESEARCH NEEDS TO LEAD TO PARTICIPATORY THERAPY. AND PARTICIPATION IN THERAPY. TOO OFTEN PUBLICLY-FUNDED PROJECTS RESULT IN PRIVATE SPIN OFFS THAT RESULT IN METHODS AND TECHNOLOGIES AND DIAGNOSTIC TESTS BEING MARKETED FOR HUNDREDS OR EVEN THOUSANDS OF DOLLARS TO FAMILIES WHO ARE ALREADY BEING IMPOVERISHED BY THIS CONDITION. NOW THAT IS BAD ENOUGH IN HIGH-INCOME COUNTRIES BUT WHEN YOU LOOK AT IT IN A GLOBAL CONTEXT, WHERE PEOPLE -- YOU'RE NOT GOING TO HAVE A TABLET. THEY PROBABLY MIGHT HAVE A SMARTPHONE. THEY MIGHT NOT EVEN HAVE A TOILET BUT MANY PEOPLE DO HAVE A SMARTPHONE. THE TROUBLE IS THAT WE ARE DEVELOPING THESE THERAPIES THAT ARE POTENTIALLY GOING TO BE STOPPED IN THE PRIVATE COMPANIES AND NOT BE ACCESSIBLE EVEN FOR PEOPLE IN THE UNITED STATES. AND CERTAINLY NOT ACCESSIBLE ON A GLOBAL SCALE. WE HAVE SEEN THIS HAPPEN BEFORE WHEN AUTISM DIAGNOSTIC TESTS. WHY DOES IT NOT GET USED IN INDIA? IT'S BECAUSE NOBODY CAN PAY FOR IT. THAT IS ONE POINT. THE OTHER POINT IS, WE SAID THAT ALL PEOPLE SHOULD BE ENTITLED TO INDEPENDENT COMMUNICATION AND THEN THAT IS A GOAL TO WHICH I WHOLEHEARTEDLY SUBSCRIBE. BUT IN ADDITION, PEOPLE SHOULD BE ENTITLED TO RESPECT AS PERSONS. AND JORDYN MADE A VERY ELEGANT POINT ABOUT THAT. SHE WAS BEING -- SHE TALKED ABOUT BEING TALKED AROUND AND TALKED DOWN TO. I RECALL THAT THERE WAS A PERSON WITH -- WHO WAS AN AAC USER WHO APPROACHED.BIDE WHEN HE WAS ON THE CAMPAIGN TRAIL. AND BIDEN TALKED TO HIM AS THOUGH HE WERE SOME KIND OF FOOL. TALKING DOWN TO HIM SAYING, YOU ARE SMART. I WISH I COULD FIND THE VIDEO ON YouTube. IT ENRAGED ME. NOW I DON'T KNOW HOW MUCH MY BROTHER -- HOW MUCH OF MY BROTHER'S JOHN'S ASSISTED TYPED COMMUNICATIONS CAME FROM HIM. I KNOW THAT SOME OF THEM DO. I ALSO KNOW THAT SOME OF THEM HAVE NOT. BUT WHAT I DO KNOW IS THAT WHEN HE WAS GIVEN ACCESS TO TYPING, AND WHEN PEOPLE STARTED TAKING HIM SERIOUSLY AS A CONVERSATION PARTNER, YOU COULD SEE THE RELIEF IN HIS FACE. AND I DON'T CARE IF THE TYPING IS ALL RUBBISH. I DON'T THINK ALL OF IT IS. BUT THAT RESPECT, THAT BEING TAKEN SERIOUSLY IS ALSO HIGHLY, HIGHLY IMPORTANT. AND WE NEED TO KEEP THAT IN MIND ALWAYS. >>JUDITH COOPER: THANK YOU, MATTHEW. VERY IMPORTANT POINT. ZACK? >>SO, RIGHT. I ALSO WOULD LIKE TO MAKE A FEW POINTS. A LITTLE OFF TRACK FROM WHERE THE LAST COUPLE OF CONVERSATION POINTS HAVE TAKEN US. BUT I WANT TO SEAR BACK A LITTLE BIT TOWARDS THE HETEROGENEITY OF THIS POPULATION. BECAUSE THIS IS SOMETHING THAT HAS COME UP A FEW TIMES TODAY. AND ONE OF THE -- AGAIN BROUGHT UP A LOT YESTERDAY TOO. BECAUSE AGAIN, DESPITE ALL FOLKS HERE BEING MINIMALLY VERBAL AND MINIMALLY SPEAKING OR NON VERBAL AND NON-SPEAKING, AGAIN WE ARE NECESSARILY TALKING ABOUT DIFFERENT CORE DEFICITS THAT ARE CAUSING THE LOW LEVELS OF SPEECH OR LANGUAGE. SOME OF IT IS SPEECH. SOME OF IT IS LANGUAGE. SOME OF IT IS COCK NITION. AND THOSE ARE FUNDAMENTALLY DIFFERENT THINGS -- COGNITION. -- THAT PERHAPS WE FUND DIFFERENT INTERVENTIONS. IF YOU SIMPLY NEED OR HAVE INTACT LANGUAGE AND YOU NEED SOMETHING TO COMMUNICATE, BECAUSE YOUR LANGUAGE IS INTACT, THAT'S GREAT. IT'S EASY FIX. HOPEFULLY. YOU DON'T NEED TOO MUCH IN THE WAY OF ACTUAL LANGUAGE INSTRUCTION. YOU MIGHT ACTUALLY HAVE A GREAT RECEPTIVE VOCABULARY ALREADY. IN SOME CASES YOU DON'T HAVE THE CONCEPTUAL KNOWLEDGE TO PRODUCE ANY LANGUAGE. YOU MAY HAVE A PRETTY SEVERE INTELLECTUAL DISABILITY AND YOU MAY NOT -- YOU MAY BE PRETTY CONCEALING BY YOUR COGNITION. IN THOSE CASES, THERE MIGHT NOT BE A LOT LANGUAGE INTERVENTION CAN DO FOR YOU. CLEARLY THESE ARE DIFFERENT PEOPLE WHO NEED DIFFERENT THINGS. WE NEED TO DO MORE BEFORE WE IMPLEMENT THE INTERVENTIONS TO SUBTYPE PEOPLE, TO UNDERSTAND WHO IS GOING TO EVEN POTENTIALLY BENEFIT FROM INCLUSION IN A TRIAL. IT'S HARD, OBVIOUSLY WHEN WE GET TO THE 3-YEAR-OLDS, TWO-YEAR-OLDS. WE DON'T DIAGNOSE INTELLECTUAL DISABILITIES IN THESE KIDS. EVEN THE KIDS WHO ARE LIKE, OKAY, THIS IS A GLOBAL DELAY. WE ARE PRETTY SURE. ACCOUNT WE HAVE THE DIAGNOSIS AND FRAGILE X -- THERE ARE [ INAUDIBLE ] MORE SEVERE BUT OKAY. BUT IN IDIOPATHIC ID, WE ARE NOT SURE. WE HEDGED, ET CETERA. THERE ARE ALL SORTS OF VARIABLE TRAJECTORIES. AND IT'S VERY IMPORTANT FOR US AS CLINICIANS TO FIGURE OUT HOW CAN WE SUBTYPE? HOW CAN WE STRATIFY? BECAUSE THAT'S GOING TO MATTER A LOT, ESPECIALLY IF WE ARE TRYING TO START EARLY TO MATCH THE CHILD, MATCH THE PERSON TO THE INTERVENTION. BECAUSE AGAIN WE WANT OUTCOMES THAT ARE GOING TO BE FUNCTIONAL FOR PEOPLE. AND CLEARLY THEY WILL BE DIFFERENT FOR DIFFERENT PEOPLE. >>JUDITH COOPER: THANK YOU, ZACK. GIACOMO? >>THANK YOU. YES, I RAISED MY HAND BECAUSE I WANTED TO RESPOND TO OUR COLLEAGUE, JOE ABOUT MEASURES. NOT ME, BUT MY CANADIAN COLLEAGUES, ISABEL AND HELL AN FLANAGAN CREATED A TOOL CALLED THE ASSESSMENT OF FACE OF PRESCHOOL LANGUAGE OR APPLE, WHICH APPLIES TO LANGUAGE BENCHMARKS FRAMEWORK FOR PROFILES OF LANGUAGE LOOKING AT PRAGMATICS, VOCABULARY, GRAMMAR. AND DIFFERENT DIMENSIONS OF LANGUAGE THAT CAN BE USED FLEXIBLEY THROUGH FROM TRANSCRIPTS OR FROM STANDARDIZED MEASURES WHICH WE HAVE USED FOR WHAT I'M LEADING IN THESE FINAL STAGES. WE WERE ABLE TO CHARACTERIZE A SAMPLE OF 1000 OR SO CHILDREN WHO RECEIVED THE INTERVENTION AND HALF OF THEM WERE IN A -- MINIMALLY VERBAL AFTER THE INTERVENTION AND WE ARE TRYING TO UNDERSTAND WHY. IT'S A GREAT TOOL. I ALSO WANTED TO -- I REALLY AGREED ON THE IDEA THAT WE NEED TO BE ON THE SAME PAGE. BUT I THINK WE ARE NOT DOING ENOUGH METICULOUS EXAMINATIONS OF WHAT ARE THE INTENTIONS THAT SOMETIMES PREVENT US FROM BEING ON THE SAME PAGE IN BETWEEN SCIENTIST OR PEOPLE TRAINED AS SCIENTISTS. AND STAKEHOLDERS IN THE COMMUNITY. AND I THINK SOME OF THE ONGOING TENSIONS MIGHT BE RELATED TO THE FACT THAT A SCIENTIST WE ARE TRAINED TO BE SKEPTICAL TO STAY AWAY FROM ANECDOTAL EVIDENCE AND THIS MENTALITY THAT COMINGS FROM OUR TRAINING, PROBABLY COMES ACROSS AS NOT TRUSTING OR NOT REALLY WANTING TO ENGAGE WITH PEOPLE'S LIVED EXPERIENCE. AND THAT IS ATTENTION. I'M NOT SAYING IT IS WRONG TO BE A SCIENTIST OR THAT WE NEED TO ENGAGE WITH ANY LIVED WITH EXPERIENCE. BUT I CAN SEE WHEN I TRAIN YOUNG SCIENTIST THEY NEED TO STRIKE A BALANCE BETWEEN WHAT IS LISTENING TO PEOPLE'S LIVED EXPERIENCE WHILE ADOPTING THE FOUNDATION OF THE SCIENTIFIC METHOD IS A HEALTHY SKEPTICISM. IT'S LOOKING AT GOING BEYOND WHAT YOU IMMEDIATELY FEEL. SO THAT CREATES A COMPLICATED DYNAMIC IN THE FIELD THAT WE NEED TO STUDY MORE. THIS IS ALSO IN ITSELF A RESEARCH QUESTION ON HOW WE CONVEY BOTH PRIORITIES. AND SAME WITH THE USE OF SPECIFIC TERMS. LIKE IQ AND INTELLECTUAL DISABILITY WHICH ARE MANAGED TO ACCOMPLISH WHAT WAS SAYING BEFORE. PHENOTYPING PEOPLE SO WE UNDERSTAND AND WHAT ZACK WAS SAYING, UNDERSTAND INDIVIDUAL DIFFERENCES BETTER IF WE QUANTIFY. WE ALSO UNDERSTAND INTELLECTUAL DISABILITY COMES ACROSS AS A DEROGATIVE TERM THAT PEOPLE WANT TO DISTANCE THEMSELVES FROM. AND IT'S DISTANCING THEMSELVES FROM INTELLECTUAL DISABILITY CAN CREATE OR PUT YOU IN A CORNER AND YOU DON'T WANT TO TALK ABOUT IT ANYMORE BECAUSE IT'S GOING TO BE, COME ACROSS AS IF YOU ARE UNDER VALUING PEOPLE. AND THAT CONVERSATION BECOMES EVEN MORE DIFFICULT BECAUSE THEN OFTEN WE HEAR COMMENTS ABOUT THE RICHNESS OF THE HUMANITY OF PEOPLE OR WE CELEBRATE THEIR HUMAN FULLNESS IN RELATIONSHIP TO SOMEONE'S IQ WAS UNDERESTIMATED AND THEN IT CAME OUT THAT THAT PERSON WAS INDEED EXTREMELY INTELLIGENT AND JUST HAD DIFFERENT BARRIERS. BUT IT'S VERY IMPORTANT THAT THIS FULLNESS, THIS QUALITY IS ALSO ACKNOWLEDGED IN PEOPLE WHO HAVE AN INTELLECTUAL DISABILITY AND HAVING THIS DISABILITY DOESN'T MAKE A PERSON LESS SUCCESSFUL PERSON. AND SOMETIMES WE JUST NEED TO MAKE SURE IS THAT THOSE NARRATIVES OF UNDERESTIMATING SOMEONE'S INTELLIGENCE ARE NOT ULTIMATELY THE NARRATIVE OF APPRECIATING THE STRENGTHS OVER SOMEONE WHO MIGHT NOT HAVE THE SAME LEVEL OF INTELLIGENCE. >>JUDITH COOPER: EXCELLENT POINT. THANK YOU VERY MUCH. KAREN? >>KAREN: THANK YOU FOR TAKING MY COMMENT. IT MY COMMENT PICKS UP ON WHAT A LOT OF PEOPLE HAVE SAID IN DIFFERENT WAYS AT DIFFERENT POINTS IN THE CONFERENCE. AND IT TOUCHES ON THE NEED FOR -- DESCRIPTIONS OF THE BLENDED STUDIES, THE NEED FOR SENSITIVE AND USEFUL OUTCOME MEASURES AND WHAT JOE WAS JUST SAYING ABOUT CREATING OBSERVATIONAL STUDIES. I THINK ONE CHALLENGE THAT I HAVE IN THIS AREA IS THAT IF I WANT TO INVESTIGATE A DEVELOPMENTAL TRAJECTORY, ESPECIALLY AS IT IS AFFECTED BY TREATMENT, I DON'T KNOW WHAT I AM MEASURING IT AGAINST AND I CAN'T NOT GIVE A CHILD THERAPY. SO I THINK THAT SOMEHOW IF WE HAVE ROOM FOR PHENOTYPING OR NATURAL HISTORY STUDIES THAT JUST FOLLOW PEOPLE FOR MANY, MANY YEARS IF THEY ARE WILLING TO BE IN PARTNERSHIP WITH A RESEARCHER. WE COULD PROBABLY COME UP WITH SOME MODULARIZED MEASURES, TAKING MY INSPIRATION FROM THE ADOS WHERE SOME PEOPLE GET -- THERE IS SOME SMALL SET OF MEASURES THAT EVERYBODY GETS AND THEN AS PEOPLE'S ABILITIES DEVELOP AND GROW, THEY GET MORE MEASURES. SOMETHING TO CONSIDER. >>JUDITH COOPER: THANK YOU. LARRY? >>LARRY: I'D LIKE TO RESPOND WHAT LEN BROUGHT UP. GREAT QUESTIONS. AND I LOVE THAT QUESTION. SO THE FIRST THING ABOUT COMBINED TREATMENT BEHAVIORAL AND DRUGS FOR EXAMPLE, YOU HAVE TO DECIDE WHETHER THE BEHAVIORAL AND THE DRUG ARE POINTED AT THE SAME THING. THEY DON'T HAVE TO BE. IT'S EASIER IF THEY ARE BECAUSE YOU'RE LOOKING FOR ADDITIVE EFFECT. THE SECOND POINT IS THE PLACEBO CONTROL REFLECTS, IT OUGHT TO REFLECT THE SIMPLE TRUTH THAT WE DON'T KNOW IF THE MEDICINE HELPS OR NOT. AND SO THE IDEA THAT PARENTS MAY WANT THE MEDICINE, THEY HAVE IT IN THEIR BELIEF THAT IS IT GOING TO HELP BUT WE DON'T KNOW. AND SIDE POINT, IT WAS MENTIONED EARLIER THAT YOU COULD PERHAPS USE THE PLACEBO RUN IN AS A WAY TO DO TEST AND RETEST. I UNDERSTAND THE IMPULSE BUT NOT REALLY. BECAUSE PLACEBO PEOPLE HAVE EXPECTATIONS THAT COULD EFFECT TEST AND RETEST. AND THEN THE POINT ABOUT PEOPLE THAT GET RANDOMIZED PLACEBO OR GET NOTHING. THEY ARE GETTING THE BEHAVIORAL INTERVENTION AND YOU CAN OFFER THE MEDICATION AFTER THE RANDOMIZED PHASE. SO IT ISN'T A BUST. AND THEN, LAST BUT NOT LEAST, ON THE ISSUE OF OUTANY MEASURE. PARENT RATINGS ARE GREAT. I THINK THEY ARE GREAT. AND A PARENT MEDIATED INTERVENTION IS COMPLICATED BECAUSE THEY ARE PART OF THE INTERVENTION. SO, THEY CAN'T STAND ALONE. AND BACK TO MICHAEL SAND BANK AND COMPANY'S META-ANALYSIS THAT THERE WERE A LOT OF STUDIES THAT DID NOT HAVE BLINDED OUTCOMES. AND SO, YOU NEED TO HAVE IN ADDITION TO PARENT RATINGS, A WAY TO GET AT BLINDED OUTCOMES LIKE THE CGI. AND THE CGI HAS BEEN AROUND FOR 50 YEARS IN DRUG RESEARCH. AND IT IS A WAY OF HAVING A CLINICIAN DIVIDE THE WORLD INTO POSITIVE RESPONSE AND NEGATIVE RESPONSE. IT HAS TO HAVE INPUTS. IT HAS TO HAVE INPUTS. AND IN OUR WORK, ONE OF THE MAIN INPUTS WE GET IN ADDITION TO PARENT RATINGS AND PERFORMANCE RATINGS IS THE PARENT TARGET PROBLEM. IT'S A SIMPLE DESCRIPTION OF THE CHIEF PROBLEMS THAT THE PARENT IS DEALING WITH AND TO TRACK THAT NARRATIVE OVER TIME AS A WAY TO MAKE THE CGI RATING. >>THANK YOU. CAITLYN. >>THANK YOU. I WANTED TO ECHO WHAT A LOT OF PEOPLE SAID ABOUT THINKING, GRANT AND JORDYN FOR SHARING THEIR PERSPECTIVES. ONE OF THE THINGS THAT I WAS HEARING AS YOU WERE DESCRIBING SOME VERY VISCERAL REACTIONS TO SOCIAL INTERACTION WHEN'S YOU'RE USING DIFFERENT AAC DEVICES AND LEARNING WHAT COMMUNICATION PIECES WORK FOR YOU. IT WAS REMINDING US THAT THESE EXPERIENCES HAVE THESE LONG LASTING IMPRINTS ON HOW OUR BRAINS ARE FORMING AND THOSE SUBSTRATES. SO REALLY MAKING SURE THAT WHEN WE ARE TALKING THROUGH INTERVENTIONS, WE ARE THINKING ABOUT WAYS OF NOT ONLY PROVIDING THE TECHNOLOGY OR THE TECHNIQUES TO ENABLE COMMUNICATION, BUT THINKING ABOUT THESE SOCIALIZATION PROCEDURES. SO IF IT'S A MATTER OF HAVING A NEW DEVICE, IS THERE A WAY TO ALSO BUILD IN THOSE SOCIAL SUPPORTS AT THE LOCAL LEVEL IN THE CLASSROOM AS WELL AS HAVING A QUICK WAY AND EXPLAINING AND TEACHING? I THINK LEN MENTIONED THIS YESTERDAY. WE NEED MAKE SURE WE ARE TEACHING ETIQUETTE FOR THE OTHER SIDE OF THE COMMUNICATION. SO IT'S NOT PUTTING EVERYTHING BACK ON THE INDIVIDUAL. AND THE OTHER UNDERLYING POINT I WANT TO EMPHASIZE, YOU TALKED A LITTLE BIT ABOUT THIS AND I THINK ZACK MENTIONED COMING BACK TO THINKING THROUGH THE ETIOLOGY AND WE'RE NOT NECESSARILY ALWAYS BEING AS INCLUSIVE. SO I SPENT A LOT OF TIME LAST YEAR DRIVING AROUND THE COUNTRY AND WORKING WITH SOME OF OUR MINIMALLY VERBAL NON-SPEAKING KIDDOS WHO HAVE NEVER REALLY SEEN A SPEECH-LANGUAGE PATHOLOGIST BECAUSE THEY DON'T HAVE ACCESS TO THAT. SO A LOT OF US ARE IN OUR URBAN HUBS AND WE ARE CREATING THESE AMAZING PIECES BUT THINKING ABOUT HOW WE ROLLOUT OUR INTERVENTIONS AND BUILDING TRULY INCLUSIVE PRACTICES TO REDUCE THOSE FEELINGS OF SEGREGATION THAT JORDYN MENTIONED. AND I THINK IT WILL BE ABSOLUTELY CRITICAL TO CREATING WELL-BEING IN AS MANY FOLKS AS WE CAN. >>JUDITH COOPER: THANK YOU. DANNY. >>DANNY: CAN YOU YOU HEAR ME? I'LL BE QUICK. I WANTED TO SHARE THREE OBSERVATIONS BASED ON ALL OF THE EXCITING THINGS I HEARD TODAY. MY FIRST ONE IS IN RESPONSE TO THE EXCITEMENT BY LARRY, LEN AND OTHERS ON MULTICOMPONENT INTERVENTIONS. I WANTED TO SHARE THAT BASED ON MY 22 YEARS OF RESEARCH, IN ACTUAL PRACTICE SETTINGS, OKAY, SO I'M TALKING ABOUT IN ACTUAL PRACTICE SETTINGS, ALMOST ALL INTERVENTIONS I HAVE EVER SEEN OR WORKED ON ARE MULTICOMPONENT. OKAY? HANDS DOWN. AND I DIDN'T SAY ALL OF THEM BECAUSE WE MIGHT GET LUCKY AND BE ABLE TO FIND ONE OR TWO. BUT ALMOST ALL OF THEM ARE MULTICOMPONENT. AND I THINK ONE REASON WE MIGHT BE SEEING THIS AS A NOVELTY IS BECAUSE MANY OF US ARE TRAINED IN EFFICACY RESEARCH WHERE THE GOAL IS TO ISOLATE ONE STINGEL THING AND CONTROL THE REST OF THE WORLD. SO THAT BRINGS ME TO MY SECOND COMMENT. MY SECOND INNOCENT TARGETED AT JUDITH BUT MAYBE ALSO ALL OF US SCIENTISTS. I REALLY. TO GET MORE SERIOUS IN OUR AUTISM RESEARCH ABOUT THE HANDOFF FROM EFFICACY TO EFFECTIVENESS TO IMPLEMENTATION. WE ALL LOVE THE TRANSLATIONAL MODEL BUT I THINK WE'RE NOT DOING A GREAT JOB OF IT. AND THERE IS SO MUCH WE CAN DO THAT IS NOT THAT HARD IN AUTISM TO SORT OF SPEED UP THAT TRACK. OKAY? AND LET ME STOP THERE BECAUSE I THINK WHAT ENDS UP HAPPENING IS, AS WE MOVE DOWN THAT TRANSLATIONAL TRACK, THINGS GET MORE MULTICOMPONENT AND MORE REAL AND MORE EXCITING BUT ALSO, THIS IS KEY, JUDITH, NEWER IDEAS ARE NEEDED. AND THIS WHOLE IDEA THAT I SHARED WITH YOU EARLIER ABOUT OPTIMIZATION BECOMES EVER MORE IMPORTANT AS WE MOVE INTO EFFECTIVENESS AND IMPLEMENTATION. BECAUSE NOW THE RESEARCH IS NOT ABOUT ISOLATING THIS ONE LITTLE THING IN SOME LABORATORY AND IF YOU FORCE EVERYONE TO TAKE THE MED, YOU FIND THAT IT WORKS. THAT'S GREAT. I DON'T HAVE A PROBLEM WITH THAT. BUT AS WE MOVE INTO THE REAL WORLD, WE ARE REALLY TRYING TO ASSEMBLE AND CONSTRUCT REAL-WORLD INTERVENTIONS THAT HAVE VARIOUS MOVING PARTS. AND I JUST NEED US IN AUTISM TO LET GO OF -- THERE IS ONLY ONE WAY TO DO THAT KIND OF RESEARCH. I'LL STOP THERE AND I HOPE THAT WAS PROVOCATIVE AND EXCITING FOR YOU. >>CAN I JUST SAY AMEN! [ LAUGHS ] >>JUDITH COOPER: THANK YOU, BOTH. WE ARE LISTENING. STEPHEN? >>STEPHEN CAMARATA: SOMETIMES I HAVE A LOT OF POPULATION AROUND ISSUES AND I REALLY WANT TO PUT OUT -- PASSION -- THIS NOTION OF DISABILITY AND TURN IT ON ITS HEAD. WHEN I'M FORTUNATE ENOUGH TO MEET A FAMILY AND A PERSON WITH QUOTE/UNQUOTE INTELLECTUAL DISABILITY, IT MEANS TO ME SIMPLY THAT I'M GOING TO HAVE TO WORK HARDER TO BE MORE FOCUSED AND BE BETTER AT HELPING THAT PERSON WITH COMMUNICATION OR WHATEVER IT IS THEY NEED. BECAUSE THERE IS A HIGHER PRICE TO THAT KNOWLEDGE. AND SO, TO ME, I DON'T WANT TO SEE IT AS EXCLUSIONARY OR LIMITING. I WANT TO SEE IT AS SAYING, LOOK, THIS PERSON IS GOING TO TAKE LONGER. THEY HAVE MORE NEEDS. AND SO I HAVE TO BE REALLY GOOD AT PRIORITIZING. I HAVE TO BE REALLY EFFICIENT IN THE TEACHING AND IT MAY INVOLVE THESE MULTIPLE COMPONENTS, THINGS WE TALKED ABOUT. BUT I JUST DON'T LIKE THINKING ABOUT THIS AS A LIMITING FACTOR. I WANT TO THINK ABOUT IT AS OH, MY GOSH! ONE OF MY CHILDREN HAS SEVERE RECEPTIVE LANGUAGE DISORDER GROWING UP AND IT TOOK ME FAST MAPPING. IT WAS SLOW MAPPING. IT TOOK 5 HELPED PRESENTATIONS TO GET HIM TO REMEMBER A WORD FROM ONE DAY TO THE NEXT. AND -- 500 -- SO HI TO BE VERY EFFICIENT ABOUT WHAT I WAS DOING AND HOW I WAS DOING IT. AND BY THE WAY, HE WAS MISIDENTIFIED AS INTELLECTUAL DISABILITY BACK THEN. BUT MY POINT IS THAT I DON'T WANT TO TALK ABOUT THAT WAY. I DON'T WANT TO ACCEPT THE PREMISE. I WANT TO SAY LOOK, EVERYBODY CAN LEARN. EVERYBODY -- WE CAN BUILD WITH EVERYBODY. AND WHAT THIS GROUP NEEDS TO DO IS TO GIVE PEOPLE THE TOOLESS TO DO THAT IN THE MOST EFFECTIVE AND EFFICIENT WAY, ESPECIALLY WHEN WE KNOW IT'S GOING TO BE A HIGHER COST TO TEACHING AND LEARNING. THAT'S MY RANT. >>THANK YOU, STEPHEN. IT'S NOT A RANT AT ALL. COURTNEY. >>I'M GOING TO REPEAT MYSELF SLIGHTLY BUT I REALLY WANT TO EMPHASIZE WITH CATHY LORD SAID ABOUT THE NEED TO REALLY THINK BIG AND LOOK AT SYSTEMIC THINGS WE CAN DO TO MOVE THIS FORWARD. I THINK I MENTIONED YESTERDAY THESE INITIATIVES AND DEVELOPMENTAL PSYCHOLOGY AND EXPERIMENTAL PSYCHOLOGY, MANY BABIES, MANY LABS, WHERE THEY HAVE SET PROTOCOLS AND THEY GET LABS ALL OVER THE WORLD TO TRY AND REPLICATE STUDIES. AND I THINK THIS IS SUCH A FASCINATING PROGRAM OF RESEARCH THAT HAS A HUGE NUMBER OF BENEFITS. ONE, YOU CAN GET ENDS, SUFFICIENT ENDS TO SAY THINGS ABOUT MEASUREMENTS AND ABOUT INDIVIDUAL DIFFERENCES AND RESPONSE TO TREATMENT. YOU CAN LOOK AT CONTEXTURAL EFFECTS. YOU CAN DEFINITELY INCREASE YOUR DIVERSITY. AND IT ALSO MAKES RESOURCES AVAILABLE TO COUNTRIES AND TO RESEARCHERS WHO MIGHT NOT HAVE THOSE RESOURCES INCLUDING EARLY CAREER RESEARCHERS. SO I JUST THINK IT'S A WIN-WIN. AND THIS SEEMS LIKE A FORUM WHERE YOU COULD GET SOME AGREEMENT ON KIND OF KEY THINGS THAT YOU MIGHT WANT TO PUSH FOR REPLICATION AND WHERE YOU CAN POOL DATA AND WHERE YOU CAN BUILD ON THE EXPERTISE OF PEOPLE WHO ARE DOING META-ANALYSIS AND LOOKING AT MEASUREMENT ON A REALLY BIG SCALE. AND I THINK THAT WOULD BE SUCH A VALUABLE THING TO DO TO PUSH THIS AGENDA FORWARD. >>THANK YOU, COURTNEY. LYNNE:. >>I WANT TO PUSH BACK ON A COUPLE OF THINGS A LITTLE BIT. I MEAN, I THINK ONE OF THE REASONS THAT I THINK IT WOULD BE USEFUL TO FIGURE OUT DESIGNS IN WHICH WE CANNOT ONLY DO INTERVENTIONS BUT LOOK AT THE PSYCHOMETRIC PROPERTIES OF OUTCOME MEASURES, IS BECAUSE WE REALLY NEED TO AGGREGATE ACROSS STUDIES. I THINK THAT'S JUST A REALITY. AND I THINK THE MORE THAT WE CAN ACCOMPLISH MORE IN ONE STUDY -- WE DON'T WANT TO DO SLOPPY RESEARCH. BUT IT MAY BE WE NEED TO THINK OF NEW DESIGNS. THAT'S ESPECIALLY IMPORTANT BECAUSE ONE OF THE PROBLEMS WE HAVE WITH EVALUATING NEW OUTCOME MEASURES IS ARE THEY SENSITIVE TO CHANGE? IF WE EMBED THIS IN THESE INTERVENTIONS, WE CAN BEGIN TO ASK THAT QUESTION. I'M NOT GOING TO PRETEND TO UNDERSTAND ALL THE NUANCES OF CLINICAL TRIAL DESIGN AND LARRY PROBABLY KNOW SYSTEM MORE ABOUT THAT THAN I WILL EVEREVER KNOW. BUT I THINK IT'S A CHALLENGE FOR US. AND I THINK THE OTHER THING -- I AGREE WITH DANIELLE ABOUT THE MULTICOMPONENT INTERVENTIONS REFLECTED OF PRACTICE. THE PROBLEM WITH THAT IS OFTEN THESE MULTICOMPONENTS IN PRACTICE ARE NOT DRIVEN BY EVIDENCE. I MEAN WE SEE THAT WITH POLYPHARMACY WHERE WHO KNOWS WHAT IS GETTING ADDED ON AND WHY THINGS ARE BEING TAKEN OFF. AND I THINK THE EXPERIMENTAL APPROACH WHERE WE STILL TRY TO DISENTANGLE THESE EFFECTS, IS STILL USEFUL. AND MAYBE EVEN MORE MOTIVATED BECAUSE THAT REFLECTS THE REALITY. AND SO, THEN I THINK THE LAST THING IS MAYBE AN ADDITIONAL POINT AND THIS FOLLOWS UP ON SOMETHING THAT STEVE SAID. SOME COLLEAGUE OF MINE, JUST PUBLISHED A PAREN WHERE SHE AGGREGATED SOME OF OUR INTERVENTION DATA AND LOOKED AT MEASURES OF PARENT'S WELL-BEING AND STRESS AT THE BEGINNING, AT BASELINE AND WHAT SHE FOUND IS THERE WAS SOME EVIDENCE THAT PARENTS -- IS THIS SHOULDN'T BE SURPRISING. PARENTS WERE MORE STRESSED AND PERHAPS HAD MORE EMOTIONAL CHALLENGES AT THE START OF THE INTERVENTION AND ARE SLOWER TO LEARN THE INTERVENTION AND LESS LIKELY TO IMPLEMENT IT AND THEIR CHILDREN MAKE LESS PROGRESS. AND SO, THIS IS NOT THE PATHOLOGIZE PARENTS BUT I THINK IT POINTS TO THE FACT THAT WE REALLY NEED FAMILY SYSTEMS APPROACH TO INTERVENTIONS TO UNDERSTAND WHERE WE NEED TO INTERVENE, HOW WE CAN SUPPORT FAMILIES OPTIMALLY, WHEN IS THE RIGHT TIME TO ASK THEM TO HELP WITH THERAPIES AND THINGS LIKE THAT? AND YOU KNOW, WE CONTINUE TO HAVE THIS FOCUS ONLY ON THE CHILD, WHICH MAKES SENSE. BUT ULTIMATELY THAT MAY NOT BE -- GET US THE BIGGEST BANG FOR OUR BUCK IN TERMS OF INTERVENTION. WE NEED TO LOOK AT THE WHOLE FAMILY AS THE SOURCE OF SUPPORT FOR AN INDIVIDUAL CHILD. >>THANK YOU, LEN. ELAN? >>I DON'T KNOW MY TIMING WAS SPEAKING COULDN'T BE ABOUT BETTER AFTER INTERVENTION OF STEPHEN AND INTERVENTION OF TRAUMA SPEAKING AS PARENT. I CAN ONLY AGREE TO WHAT HAS BEEN SAID. THE PHENOTYPING IS VERY IMPORTANT. THE ROLE OF THE PARTICIPATORY RESEARCH WITH THE PARENTS, I MEAN IT'S GREAT IT'S ALSO AN ENORMOUS RESPONSIBILITY THAT IS PUT ON THE PARENTS SHOULDERS WHO MIGHT THINK THAT THEY ARE UP TO DO IT. THEY WANT TO DO IT, BUT IT'S AN ENORMOUS CHALLENGE WHEN AT THE SAME TIME THEY HAVE TO TAKE CARE OF THE KID BEING SICK, THE KID NOT EATING, THE KID HAVING TOILETING PROBLEM. THE PROBLEM WITH THE TEACHER. THE PROBLEM WITH THE -- SO IT'S AN ENORMOUS CHALLENGE. THE FEELING OF FAILURE OF THE PARENTS IS ENORMOUS. ESPECIALLY WHEN THE NEW APPROACHES ARE SUPPOSED TO BE THIS MARVELOUS THING THAT IS GOING TO SOLVE THE PROBLEM AND WHEN YOUR KID DOESN'T PROGRESS, THE PARENTS NOT ONLY -- YOU MAKE IT MUCH HARDER FOR THE PARENTS TO CONTINUE PARTICIPATING. AND ALMOST -- AND SO MUCH MORE DIFFICULT FOR THE CHILD WHEN YOU HAVE TO SWITCH TO ANOTHER APPROACH. THE IDEA OF THE MULTICOMPONENT INTERVENTION IS ALSO GREAT AND I THINK WHAT DANIELLE SAID YES, MOST OF THEM ARE. BUT VERY OFTEN IT'S AGAINST THE WILL OF THE PEOPLE THAT ARE VERY OFTEN, ENTHUSIASTIC ABOUT THEIR METHOD AND THEY -- THEIR METHOD IS GOING TO BE -UE KNOW, SOLVING THE PROBLEMMA AND NOT TO BLAME THEM BECAUSE WE WANT THE RESEARCH TO BE ENTHUSIASTIC. BURR IT'S VERY DIFFICULT TO HAVE MULTICOMPONENT APPROACHES AND ESPECIALLY IF SOMEBODY WANTS TO GET SCIENTIFIC DATA OUT OF IT. WHAT IS INFLUENCING WHAT IN THE OUTCOME? SO BEATING UP ON THE -- ABOUT THE TRAUMA, ABOUT WHAT LEN SAID, ABOUT WHAT STEPHEN SAID, ABOUT WHAT JORDYN AND GRANT SAID. THERE IS A LOT TO DO BUT THINK ABOUT THE STAKEHOLDER PARENTS. THEIR ROLE YOU HAVE TO BE REALLY CAREFUL WHAT THEY CAN UNDERTAKE, WHAT THEY ARE ABLE TO, AND ALSO THE FEELING OF FAILURE SHOULD NOT DETOUR THEM TO TRY OTHER APPROACHES. IF THE ONE THAT WAS IN FRONT OF THEM IS NOT SUCCESSFUL. OKAY, I'M NOT GOING TO SPEAK ANYMORE. >>THANK YOU. CAN I INTERSEABLITE? SO JORDYN WANTS TO RESPOND TO STEPHEN'S COMMENT. SO I'LL TREAD FOR HER. I WANT TO EMPHASIZE AND ADD WE ALSO DON'T KNOW IF SOMEONE HAS AN INTELLECTUAL DISABILITY IF THEY DON'T HAVE ACCESS TO ROBUST AAC. AND IB EFFECTIVE COMMUNICATION SYSTEMS OFTEN CAUSE PEOPLE TO ASSUME AN INTELLECTUAL DISABILITY. IQ TESTS ARE NOT EVEN EVIDENCE-BASED FOR SOMEONE WHO CANNOT RELY ON SPEECH OR MOVE THEIR HANDS RELIABLY. THEN THIS BECOMES A VICIOUS CYCLE AND LEADS TO INCREASED SEGREGATION. SO IMPORTANT COMMENT. THANK YOU, JORDYN. >>THANK YOU, JORDYN. I THINK NEXT IS DAVID. >>SO I ALSO WANT TO HIGHLIGHT STEPHEN'S COMMENT WITH RESPECT TO THE IDEA THAT TRULY EVERYONE CAN LEARN. AND IF THEY ARE NOT LEARNING, I THINK IT MAY BE A QUESTION AS MUCH OF WHAT WE ARE TRYING TO TEACH AS WELL AS HOW WE ARE TRYING TO TEACH. THE GREAT MAJORITY OF AAC THAT IS OUT THERE BEING PROMOTED MAY DO AN OKAY JOB OF SUPPORTING NEEDS AND WANTS IN SOME RESTRICTED SITUATIONS BUT REAL DOES HE NOT DO A GOOD JOB OF SUPPORTING THE FULL RANGE OF COMMUNICATIVE FUNCTIONS THAT PEOPLE NEED TO BE FULL PARTICIPANTS IN SOCIETY. AND I THINK WE CAN SEE THAT THE POWER THAT LITERACY HAD FOR MANY OF THE PEOPLE ON THE SPECTRUM THAT ARE PARTICIPATING IN THE CONVERSATION TODAY. SO THAT'S NOT TO SAY THAT THAT IS THE ONLY APPROACH AND MAY NOT BE THE VERY FIRST APPROACH. BUT I THINK WE REALLY HAVE TO QUESTION THE EXTENT TO WHICHY WOO ARE INVESTING TIME AND ENERGY IN TRYING TO PROMOTE THE USE OF SYSTEMS THAT ULTIMATELY ARE NOT GOING TO BE ABLE TO SUPPORT THE WIDE RANGE OF COMMUNICATION NEEDS THAT AUTISTIC INDIVIDUALS WANT. >>JANICE. >>I COULDN'T AGREE MORE. AND I THINK PART OF THAT IS NA WE ALSO, WHEN WE ARE SHARING OUR RESEARCH WITH OTHERS, NEED TO PROVIDE VERY CAREFUL DOCUMENTATION OF WHAT THE AAC HAS BEEN. BECAUSE THERE IS GOOD AAC AND THERE IS BAD AAC, JUST LIKE OVERING ELSE. AND WE NEED TO UNDERSTAND WHAT VOCABULARY HAS BEEN PROVIDED. HOW IS THAT VOCABULARY BEEN REPRESENTED? HOW HAS IT BEEN ORGANIZED AND LAID OUT WITHIN THE SYSTEM? HOW IS THE INDIVIDUAL BEEN EXPECTED TO SELECT IT? WHAT OUTPUT HAS BEEN PROVIDED? IT IS IN AND OF ITSELF AN INTERVENTION AND RIGHT NOW, WE ARE NOT DOING A GOOD JOB OF DOCUMENTING THAT. AND AS A RESULT, THERE IS SAY BLACK HOLE WE DON'T UNDERSTAND WHAT'S HAPPENING. SO REALLY JUST AN URGE THAT AS PEOPLE ARE DOING INTERVENTION THAT IT IS THOUGHTFUL DECISIONS ABOUT THE AAC SYSTEMS THAT ARE BEING PROVIDED. THAT THEY ARE PROVIDING ACCESS TO MEANINGFUL VOCABULARY AND MEANINGFUL WAYS TO PARTICIPATE. AND THAT THAT IS CAREFULLY DOCUMENTED IN OUR PAPERS NOT JUST WE USE SYSTEM X. THAT MEANS NOTHING. WE NEED TO KNOW EXACTLY WHAT THAT SYSTEM LOOKS LIKE. SO THAT IS ONE THING. AND THEN A SECOND THING IS, WE TALKED A LOT ABOUT HETEROGENEITY AND ANOTHER JUST COMMENT TO URGE EVERYBODY AS WE ARE PUBLISHING STUDIES THAT PROVIDE GROUP RESULTS TO PLEASE SHARE THE DATA OF THE INDIVIDUAL PARTICIPANTS WITHIN THOSE STUDIES. WE NEED TO UNDERSTAND BETTER WHAT WORKS BEST AND SO OFTEN THE GROUP RESULTS MASK INDIVIDUAL PATTERNS THAT WE CAN REALLY LEARN FROM. SO IT'S BEEN INTERESTING TO ME AND SOME OF THE MEDICAL LITERATURE SPECIFICALLY. SOME OF THE DRUG-BASED LITERATURE, THEY REALLY FORCE LIKE A THREE TIERED LEVEL OF ANALYSIS WITH GROUP RESULTS WHERE THEY LOOK AT THE GROUP PATTERNS BUT BEYOND THAT THEY LOOK AT WHAT PERCENTAGE OF PEOPLE COMPLY WITH THE GROUP PATTERNS IN AND AT AN INDIVIDUAL LEVEL, WHAT DOLT UNIQUE CASES LOOK LIKE WHERE PEOPLE ARE NOT FINDING CERTAIN INTERVENTIONS EFFECTIVE OR THEY ARE INDEED FINDING OTHER INTERVENTION ITS FAITHIVES? THAT IS HOW WE ARE ANYTHING TO LEARN WHAT WORKS BEST FOR WHOM. SO JUST URGING EVERYBODY TO SHARE YOUR -- SHARE YOUR INDIVIDUAL DATA NOT JUST YOUR GROUP RESULTS. AND ONE FINAL QUICK COMMENT. I THINK IT'S REALLY INTERESTING WHEN OUR INTERVENTIONS ARE EFFECTIVE. IT'S ALWAYS THE INTERVENTION THAT IS EFFECTIVE. WHEN THEY ARE NOT, IT'S THE INDIVIDUAL THAT DIDN'T RESPOND. SO AGAIN, IT'S ALWAYS ON THE INTERVENTION, ON THE JOB WE DID IN TERMS OF DESIGNING THINGS. SO THEY ARE EITHER EFFECTIVE OR NOT FOR THAT PARTICULAR INDIVIDUAL. >>ABSOLUTELY, JANICE AND I'M GOING TO INTERJECT AGAIN BECAUSE FROM GRANT, JUST -- THIS IS MOVING VERY FAST, THIS CONVERSATION AND THEY ARE TRYING TO GET IN THERE. BUT FROM GRANT HE SAYS, I LOVE WHAT YOU SAID CAITLYN, SO THIS WAS AIFY PEOPLE AGO. AND I COMPLETELY AGREE THAT SCHOOL COMMUNITIES AND COMMUNICATION PARTNERS CAN BE TRAINED TO BE INCREDIBLE ALLIES TO UPHOLD AAC ETIQUETTE AND THE POINT OUT DISCRIMINATION WHEN NECESSARY. SO THANK YOU, GRANT FOR THAT MEANT. A FEW BACK. >>CHARLOTTE? >>IN RESPONSE TO WHAT A LOT OF FOLKS HAVE ALREADY BROUGHT UP UI WANTED TO MAKE A PLUG FOR DESIGNING RESEARCH THAT HAS SOME SORT OF FLEXIBLE SET OF ASSESSMENTS FOR PHENOTYPING. I KNOW A LOT OF FOLKS ON THIS CALL ALREADY DO THAT BECAUSE YOU WERE THE ONES THAT TRAINED ME AND NOW I DO THAT. BUT A COUPLE OF PEOPLE HAVE BROUGHT UP THE ISSUE HOW TO CHARACTERIZE HETEROGENOUS POPULATIONS? AND I THINK THE ANSWER IS THAT WE CAN'T JUST CHOOSE ONE MEASURE AND SAY, THIS IS THE MEASURE WE ARE GOING TO USE. SOME KIDS ARE GOING TO FLOOR OUT AND SOME WILL CEALING OUT AND SO BE IT. I THINK WE AS THE RESEARCHERS HAVE TO PUSH BACK AND ADVOCATE A LITTLE BIT FOR -- MAY MAKE THE STATISTICIANS CRINGE AT THE END OF THE DAY, BUT WE NEED TO GET MEANINGFUL NUMBERS FROM OUR PARTICIPANTS. AND JORDYN AND GRANT HAVE MADE EXCELLENT POINTS ABOUT THE FACT THAT COGNITIVE ASSESSMENTS ARE NOT EVEN VALID IN A LOT OF THESE POPULATIONS. I WOULD RATHER HAVE NUMBERS FROM A FEW DIFFERENT ASSESSMENTS THAT I HAVE REASON TO BELIEVE ARE GETTING AT THE SAME CONSTRUCT THAT ARE GIVING ME VALID INFORMATION ABOUT EACH ONE OF THOSE INDIVIDUALS, THAN HAVE NUMBERS ALL FROM THE SAME ASSESSMENT WHERE I THINK ONLY HALF THE NUMBERS ARE ACTUALLY VALID. SO FOR PEOPLE WHO ARE SORT OF THINKING ABOUT THESE ISSUES OR STARTING OUT, I WOULD ENCOURAGE FOLKS TO THINK ABOUT A STRUCTURED BUT FLEXIBLE SET OF ASSESSMENTS TO TRY TO MEET THE NEEDS OF THE DIFFERENT INDIVIDUALS THAT WE'RE ASSESSING. >>THANK YOU, CHARLOTTE. VICK RAM. >>THANK YOU. I WANT TO MAKE TWO POINTS. I'M A SCIENTIST AND I HEARD A LOT ABOUT INTERVENTIONS AND HEARD A LOT ABOUT APPROACHES AND I HEARD A LOT ABOUT EXPERIMENTS. BUT I ALSO HAD A LOT OF TIME TO SPEND WITH JORDYN AND GRANT AND OTHER DISABLED FOLKS. AND ONE OF THE THINGS THAT IS SO CLEAR FROM MY EXPERIENCES WITH THEM IS THAT THEY FEEL UNDERSTANDABLY, THAT THE DAY-TO-DAY EXPERIENCES AND CHALLENGES AND OPPORTUNITIES THAT THEY FACE ARE NOT BEING CAPTURED BY MUCH OF THE RESEARCH AND THE INTERVENTION AND THE EXPERIMENTS THAT ARE BEING DONE. AND I WANT TO GIVE YOU A SPECIFIC EXAMPLE. SO, I WAS REALLY MOVED YESTERDAY BY DENISE LOMBARDI'S DESCRIPTION IN THE VIDEO THAT SHE SHOWED OF RJ SPELLING OUT BREAD AND THEN GOING TO FIND THE NUMBER 6 IN ORDER TO MAKE A REQUEST FOR BREAD STICKS. AND THAT'S NOT SOMETHING THAT WOULD BE CAPTURED IN A LAB. THAT'S NOT SOMETHING THAT TO SOMEBODY'S POINT EARLIER AN ANECDOTE MIGHT NOT BE BELIEVED, IT MIGHT BE DISMISSED. BUT IMAGINE HOW MUCH THAT TELLS YOU ABOUT THE CREATIVITY AND THE PROBLEM-SOLVING AND THE COGNITION THAT RJ WAS DEMONSTRATING IN THAT MOMENT! SO WHAT A WONDERFUL WAY TO LEVERAGE THAT KIND OF EXPERIENCE, THAT KIND OF EPISODE TO HELP RJ BUT ALSO THINK ABOUT THE AMAZING OPPORTUNITIES. IT WOULD BE TO LEVERAGE TO DEVELOP A LINE OF RESEARCH ABOUT PROBLEM-SOLVING AND CREATIVITY IN THESE SITUATIONS THAT NON-SPEAKING AND MINIMALLY VERBAL PEOPLE FIND THEMSELVES IN ALL THE TIME. SO, I'VE HEARD THIS PLEA OVER AND OVER AGAIN FROM THE FOLKS I GOET TO SPEND TIME WITH, LIKE I WISH THAT RESEARCHERS WOULD GET OUT OF THE LAB. COME SPEND A DAY WITH ME OR TWO DAYS WITH ME OR A WEEK WITH ME THROUGH ALL THE SETTINGS THAT I'M IN. AND THAT IS GOING TO BE BENEFICIAL ON SO MANY WAYS. AND I GUESS THE SECOND POINT I'LL MAKE, I OFTEN BEEN THE PHILOSOPHER WHO HAS A COGNITIVELY DISABLED DAUGHTER AND IN VARIOUS EXCHANGES SHE WAS FORCED TO HAVE WITH PETER SINGER, SHE ARTICULATED 4 PRINCIPLES OF WHAT SHE CALLS EP SETTIC PRINCIPLES. THE ONE I WILL FOCUS ON HERE IS SHE CALLS IT EPISTEMIC MODESTY. AND IT'S KNOWING WHAT YOU DON'T KNOW. AND SO WHEN IT COMES TO THINKING ABOUT SOMEBODY'S POTENTIAL OR SOMEBODY'S COGNITIVE ABILITY, WE DON'T HAVE DIRECT ACCESS TO THAT KIND OF INFORMATION ABOUT ANYBODY. AND THE PEOPLE WHO I'VE HAD THE OPPORTUNITY TO SPEND WITH, A TIME WITH AND THEIR FAMILIES S AND MYSELF, I'M SURPRISED ALL THE TIME ABOUT WHAT SOMEBODY KNOWS AND CAN DO. AND THOSE PIECES, THOSE LITTLE GLIMPSES ARE NOT GOING TO BE OBVIOUS BY STAYING IN THE LAB. JUST TO REPEAT FROM EARLIER. I THINK WE HAVE TO ALSO REMEMBER THAT THERE ARE REAL PEOPLE BEHIND ALL OF THIS RESEARCH. THANK YOU. >>THANK YOU. ZACK. >>OKAY. SO, I'M TRYING TO MAKE A COUPLE DIFFERENT POINTS HERE. SO FIRST THING, THINKING JUST ABOUT THE OVERALL TOPIC ABOUT HOW DO WE GET BETTER MEASURES FOR PSYCHOMETRICS AND OVERALL BETTER OUTCOMES? SO I DO ACTUALLY AGREE WITH LARRY. YOU DON'T REALLY WANT TO DO TEST RETEST OVER PLACEBO. THERE IS A LOT OF PROBLEMS WITH THAT. SO, BECAUSE AGAIN THERE IS LIKE A MAJOR ISSUE WHICH IS LIKE YOU ESSENTIALLY GAVE PEOPLE AN INTERVENTION OVER THE PLACEBO RUN IN. PLACEBOS ARE AN INTERVENTION. BUT THERE ARE OTHER OPTIONS. NAMELY THAT YOU CAN ACTUALLY COLLECT DATA NATURALISTICALLY. SOMEONE ELSE EARLIER WAS MENTIONING WE SHOULD DO MORE NATURALISTIC DATA COLLECTION. NATURAL HISTORY STUDIES ARE VERY IMPORTANT. AND I THINK ONE REAL AREA THAT I THINK A LOT OF PEOPLE HAVE NEGLECTED IS JUST THE DATA COLLECTION IN EVERY DAY CLINICAL PRACTICE. ALL OF THESE PARTICIPANTS THAT PEOPLE ARE THINKING OF RUNNING THROUGH THE CLINICAL TRIALS SEE CLINICAL PROFESSIONALS ANYWAY. THEY SEE A LOT OF SERVICE PROVIDERS OFTENTIMES BECAUSE THIS IS A POPULATION THAT NEEDS A LOT OF SERVICES AND OFTENTIMES THESE PEOPLE ARE ADMINISTERING A BUNCH OF STANDARDIZED MEASURES ANYWAY. IN THIS CASE, AS WE JUST LEVERAGED THESE DATA, THAT PEOPLE ARE ALREADY COLLECTING, PUT THEM IN BIG 'OLE DATABASES AND PUT THEM TOGETHER. THERE NEEDS TO BE IRBs BEHIND THESE THINGS AND STANDARDIZED PROTOCOLS TO SOME EXTENT AND WAYS OF POOLING THE DATA. AND AGAIN, I THINK HAVING JUST BIG STANDARDIZED INFRASTRUCTURE TO DO THAT FACILITATING WOULD BE REALLY, REALLY VALUABLE. AND AGAIN, SAY HERE SAY GREAT PROTOCOL FOR DOING ASSESSMENTS IF YOU COULD FIT THIS IN WHEN YOU SEE THESE KIND OF PATIENTS. CLINICIANS DO THIS. AND JOIN OUR STEP AND THEN HAVE MANY AUTISTIC PEOPLE JOIN OUR GROUP AND FOLLOW THEM AS LONG AS YOU CAN. AND THEN WE HAVE PSYCHOMELTRIX FOR ALL OF THESE STANDARDIZED THINGS. ET CETERA. ANOTHER THING IN TERMS OF FLEXIBLE PHENOTYPING, WE COULD POTENTIALLY DO WORK TO ACTUALLY EQUATE ASSESSMENTS. IF WE THINK THINGS ARE MEASURING THE SAME CONSTRUCT. THERE ARE PLENTY OF TECHNIQUES THAT COULD ACTUALLY TEST THOSE SORTS OF HYPOTHESES. NOW GRANTED LIKE USUAL I NEED NUTRITION ON YOUR TEAM TO RUN THOSE KINDS OF ANALYSIS. BUT THIS IS NOT SOMETHING THAT IS BEYOND THE SCOPE OF A R21 TO ACTUALLY TASK, ESPECIALLY IF YOU HAVE DATA WITH CLINICAL TRIAL LEVEL SAMPLES. AND SOY, IF WE HAVE THOSE KINDS OF DATA, IT IS VERY HIGHLY LIKELY THAT WE WOULD BE ABLE TO DO THAT KIND OF WORK AND THEN FROM THE KIND OF DATA WE HAVE ALREADY COLLECTED, ESSENTIALLY AGAIN IN A PHASE III TRIAL, RUN FROM THAT AND SAY, OKAY, NOW WE SAY OKAY WE HAVE THIS REALLY HETEROGENOUS POPULATION BUT WE ARE OKAY MERGING THE -- I WOULD SAY THE RECEPTIVE ONE WORD PICTURE VOCABULARY TEST IN THIS GROUP AND THE BODY IN THIS GROUP AND SOME OTHER LANGUAGE TEST IN THIS GROUP. AND THAT IS OKAY. BECAUSE WE WERE ABLE TO EQUATE THEM AND -- DISCERN WILL AND THEN THE LAST THING IS TO VICKRA'S POINTED. THERE ARE WAYS TO MEASURE SOME OF THESE SORT OF VIBIETS THAT FAMILIES CAN TELL YOU IN THE CLINICAL ENVIRONMENT. AND THAT IS THROUGH THE CLINICIAN INTERVIEW. LOTS OF TIMES IN JUST STANDARD CLINICAL PRACTICE, HOW DO YOU FIGURE OUT WHETHER THE PATIENT GETTING BETTER? YOU ASK THEM. YOU ASK THE FAMILY. AND YOU JUST SAY HOW ARE YOU DOING? THERE IS A LOT OF QUALITATIVE INFORMATION THAT GOES INTO A STANDARD CLINICAL ASSESSMENT. AND OBVIOUSLY, THIS ISN'T TYPICALLY DONE IN A CLINICAL TRIAL. WE TRY TO BE OBJECTIVE AND TRY TO GET THINGS AND STRUCTURE THEM AND PUT THEM INTO MEASURES THAT CAN BE COMPARED BETWEEN PEOPLE. HOWEVER, NEVERTHELESS, WE CAN ALWAYS DO THIS IN SOME SORT OF MORE STRUCTURED WAY. IF WE ASK THE RIGHT QUESTIONS, WE CAN PULL OUT THIS KIND OF INFORMATION, FILTER IT THROUGH CLINICAL JUDGMENT AND STILL GET THEM TO TELL US THE VIGNETTES THAT WILL GIVE US THIS KIND OF INFORMATION, WHICH WE THEN SCORE, RATE, ET CETERA, AND PUT INTO OUR OUTCOME MEASURES. AND I THINK HAVING MORE CLINICIAN RATED INTERVIEW-TYPE INSTRUMENTS COULD BE VERY VALUABLE. BECAUSE THEY COULD TELL US THIS INFORMATION. WE HAVE TO LEARN TO ASK THE RIGHT QUESTIONS. HOW DO WE DO THAT? WE ASK THE STAKEHOLDERSES WHAT THOSE QUESTIONS ARE. >>THANK YOU, ZACK. MARY ANN? >>I ORIGINALLY WAS COMING ON TO TALK ABOUT STEPHEN'S COMMENTS ABOUT INTELLECTUAL DISABILITY BUT I WANT TO ADD SOMETHING ABOUT JORDYN'S COMMENTS AS WELL. I CERTAINLY AGREE WITH WHAT STEPHEN SAID ABOUT INTELLECTUAL DISABILITY AND WHEN WE FOCUS ON WHAT THE PERSON CAN DO OR HAS THE POTENTIAL TO DO, WE OFTEN COME AWAY WITH MUCH BETTER OUTCOMES FOR THEM. AND I WANT TO RESPOND TO WHAT JORDYN SAID BECAUSE I THINK IT IS SO CRITICAL ABOUT TESTING AND IQ TESTS. IQ TESTS OFTEN ARE BASED ON LANGUAGE SKILLS AND VERBAL SKILLS THAT SOMEBODY BRINGS WHEN YOU ARE LOOKING AT FOLKS VERBAL IQ. AND INDIVIDUALS WHO ARE GOING TO BE USING AAC DON'T BRING THOSE SKILLS OR THEIR SKILLS CAN'T BE TESTED IN A TRADITIONAL WAY. SO THEY ARE PUT AT A DISADVANTAGE FROM THE ABSOLUTE BEGINNING WHEN THEY ARE BEING SEEN AND INTEGRATED INTO SOME TYPE OF INTERVENTION. I WANT TOW ADD TO THE COMMENTS THAT STEPHEN MADE ABOUT HOW WE VIEW PEOPLE WITH INTELLECTUAL DISABILITIES BECAUSE I THINK -- THIS IS ALSO TRUE FOR PEOPLE WHO USE AAC. THAT THERE ARE REAL MYTHS THAT ARE OUT THERE THAT HAVE EVOLVED OVER TIME ABOUT WHAT A PERSON CAN DO OR WHAT AN INTERVENTION WILL OR WILL NOT DO. FOR EXAMPLE, AAC WILL HINDER THE DEVELOPMENT OF SPEECH. AND THESE ARE ALL OFTEN MYTHS THAT ARE BELIEFS AND ATTITUDES THAT ARE DEVELOPED AND THEY AFFECT HOW WELL WE CAN INTERVENE AND HOW WELL WE CAN ADVANCE COMMUNICATION FOR INDIVIDUALS. SO I THINK THAT YESTERDAY THE ATTITUDES AND BELIEFS WERE TALKED ABOUT A LITTLE BIT AND I THINK THAT IT ENDS UP BEING A VERY IMPORTANT PIECE OF THINGS BECAUSE IF PEOPLE COME BOTH FAMILIES, CLINICIANS, PHYSICIANS, THEY COME WITH THESE ATTITUDES AND BELIEFS. CHANGING THOSE ATTITUDES AND BELIEFS CAN BE VERY CHALLENGING TASK FOR US. BUT THEY ALSO AFFECT HOW SUCCESSFUL AN INTERVENTION CAN BE OR NOT. SO THANK YOU. AND JORDYN, THANK YOU VERY MUCH FOR THOSE COMMENTS. >>THANK YOU, MARY ANN. WE HAVE FOUR MORE PEOPLE WITH HANDS UP AND WE HAVE -- WE ARE GETTING CLOSE TO BEING DONE. AND I DON'T KNOW IF THEY ARE PRESSING QUESTIONS FROM THE VIDEOCAST. SO I'M GOING TO GO ON AND GO TO AMY AND I ASK EVERYBODY TO BE AS BRIEF AS THEY CAN MAKE THEIR POINTS SO EVERYBODY WILL HAVE A CHANCE TO SAY THEIR PIECE. AMY. >>THANK YOU. AND I WAS REALLY THINKING HARD IF I WAS GOING TO SAY ANYTHING BUT IN THE END I DECIDED I HAD TO AND RESPONSE TO STEPHEN'S CLAIM THAT HE DOESN'T WANT TO ACCEPT THE PREMISE THAT INTELLECTUAL DISABILITIES IS LIMITING AND OTHER COMMENTS THAT FOLLOWED ABOUT THE COGNITIVE CAPACITIES THAT ARE HIDDEN IN MANY AUTISTIC PEOPLE OR THE PERCEPTION THAT THERE IS. I'M SORRY THAT YOU DON'T WANT TO ACCEPT THAT PREMISE, STEPHEN, BUT INTELLECTUAL SIGNIFICANT DISABILITIES IS EXTRAORDINARILY LIMITING. MY SON IS 24. HE LIVES AT HOME. HE CAN'T CROSS THE STREET BY HIMSELF. HE IS NEVER GOING TO GO TO COLLEGE, DRIVE, HAVE MEANINGFUL WORK, HAVE A ROMANTIC RELATIONSHIP. AND HE GETS A LOT OF JOY FROM WATCHING SESAME STREET. AND THAT IS FINE. THAT DOESN'T MAKE HIM ANY LESS HUMOR DESERVING OF OUR ATTENTION OR OUR LABOR TO EXPAND HIS HORIZONS. AND INCREASE HIS COMMUNICATIVE CAPABILITIES AND JUST HIS OPTIONS TO OPERATE IN THE WORLD. BUT I'M SAYING A LOT OF THIS SANITIZING OF AUTISM THAT NOBODY HAS A REAL INTELLECTUAL DISABILITY AND EVERYBODY HAS THIS INTACT MIND INSIDE THAT CAN BE JUST ACCESSED. THERE IS NO EVIDENCE THAT THAT IS TRUE. AND WE CAN'T PRETEND THAT INTELLECTUAL DISABILITY AWAY. IT'S SUCH -- IT IS A LIMITING THING. AND I JUST WANT TO JUST IMPLORE YOU NOT TO FALL INTO THIS TRAP THAT WE ARE SEEING WHERE THIS IS WHY FACILITATED COMMUNICATION IS RESURGING NOW. OR POLICIES ARE COMING OUT FROM STATES GETTING RID OF DISABILITY-SPECIFIC SETTINGS AND CERTAIN VOCATIONAL SETTINGS FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES AND PEOPLE AT MY SON ARE SITTING AT HOME. WHEN YOU CLOSE THOSE SETTINGS FOR PEOPLE WHO REALLY NEED THEM, THEY DON'T HAVE ACCESS TO THE SUPPORTS THAT THEY NEED. SO, WHILE IT WOULD BE LOVELY IF EVERYBODY HAD A TYPICAL OR GENIUS INTELLECT, IT'S JUST NOT THE CASE. AND I JUST WANT EVERYBODY TO REMEMBER THAT. >>THANK YOU, AMY. >>HI, TO THE POINT ABOUT PUTTING A BUNCH OF DATA IN A BIG PLACE TO STORE FOR PEOPLE TO MINE, I JUST WANTED TO BRING FROM MY BACKGROUND THAT THERE IS A FRAMEWORK FOR THAT THAT IS NIDCD SUPPORTED AND IT'S BRIAN McCLINY IS THE MASTERMIND BEHIND IT. IT'S APHASIA DOT TOPIC DOT-ORG. HE'S AT CARNEGIE MELON. THERE IS 130,000 HITS ON THAT PAGE AND DOZENS OF RESEARCHERS SUPPORTING THAT AND I DON'T KNOW HOW MANY PUBLICATIONS HAVE COME OUT OF THAT. AND AS FAR AS ENRICHING THE LITERATURE, IT'S HELPED PROVIDE DISABILITY AND VALIDITY AND RELIABILITY TO OUR DISCOURSE LITERATURE. AND FROM THAT, THERE HAS BEEN DEVELOPED BRIGHT HEMISPHERE DISCOURSE TOPICS,INS FLUENCY TOP BANK. AND I'M PRETTY CONFIDENCE IF YOU REACHED OUT TO BRIAN, HE WOULD BE INTERESTED IN HELPING THIS GROUP OF RESEARCHERS. I'M DONE. >>THANK YOU. KRISTI. >>THANK YOU SO MUCH AND I REALLY APPRECIATE AMY CHIMING IN WITH HER COMMENTS AND IN GENERAL. I HAVE A VERY PRACTICAL QUESTION THAT I SPECIFICALLY LIKE TO ADDRESS TO JORDYN AND GRANT BUT ALSO WOULD LOVE THE FEEDBACK OF THE INCREDIBLE PANEL HERE. ON WHAT TERM TO USE GOING FORWARD. WE TALKED ABOUT THE HETEROGENEITY, PHENOTYPING. WE ALL RECOGNIZE AND APPRECIATE THE BREATH OF THE SPECTRUM, INCLUDING THE MINIMALLY VERBAL NON-SPEAKING SPECTRUM. I SPENT -- I SPENT A LOT OF TIME FIGURING OUT HOW TO DISCUSS THIS POPULATION NOT ONLY IN MY DAILY LIFE. AGAIN I'M A PARENT OF A NON-SPEAKING PROFOUNDLY INTELLECTUALLY DISABLED YOUNG CHILD. HE IS 11. HE HAS A GENETIC DISORDER. HE STRUGGLES WITH VERY, VERY BASIC TASKS. TO AMY'S POINT. AAC HAS BEEN GIVEN TO HIM SINCE HE WAS TWO. IT'S STILL EMERGING. AND SO THERE IS IN MY DAILY LIFE THIS STRUGGLE TO ACKNOWLEDGE THE BREATH OF THE SPECTRUM BUT ALSO IN MY PROFESSIONAL LIFE WRITING ABOUT IT IN LITERATURE SO OTHER RESEARCHERS CAN FIND IT SO WE CAN HAVE CONFERENCES AND TOPICS AROUND THIS POPULATION AND DISCUSSION. SO I'D REALLY LOVE A PRACTICAL DISCUSSION ON WHAT TERM TO USE GOING FORWARD. AGAIN BOTH FROM JORDYN AND GRANT AND ANY OTHER RESEARCHERS IN THIS POPULATION SO WE CAN MOVE IT FORWARD BY APPRECIATING AND IDENTIFYING THE NUANCE. >>THANK YOU. KRISTI. SO I DON'T KNOW WHETHER JORDYN OR GRANT WANTS TO GO FIRST? >>GRANT: SURE. I USE NON-SPEAKING WITH HIGH SUPPORT NEEDS. >>THANK YOU, GRANT. WE'LL WAIT FOR A MINUTE WHILE JORDYN IS PREPARING HER RESPONSE RESPONSE. >>I ALSO USE NON SPEAKING AND I THINK IT'S HELPFUL TO TALK ABOUT THE SUPPORTS AND SERVICES THAT A PERSON BENEFITS FROM. >>THANK YOU, JORDYN. SO COMPARABLE TO WHAT GRANT WAS POINTING OUT. SO THE SUPPORT NEEDS. OKAY, I'M GOING TO TAKE THE -- I'M NOT THE CHAIR BUT I'M ONE OF THE CHAIRS. I'M GOING TO TAKE MY PREROGATIVE AND SAY THAT WE NEED TO -- WE ALL HAVE BEEN SITTING FOR A WHILE AND WE SAID WE WERE GOING TO STOP AT 5:00. SO WE WILL, BUT I WANT TO GIVE SOME FINAL WORDS TO SAY IF WE MAY. SO, HELEN, WOULD YOU LIKE TO GO FIRST? >>HELEN: I GUESS SO. I WANT TO THANK EVERYONE. THIS WAS A RICH AND WIDE RANGING DISCUSSION. I ESPECIALLY ENJOYED THIS AFTERNOON, HOW WE FLIPPED BETWEEN THE SORT OF MORE PERSONAL, MORE EXPERIENTIAL DISCUSSION OF THE TOPICS AT HAND AND THEN THE REALLY WONDERFUL SCIENTIFIC CONTRIBUTIONS AROUND DESIGN AND OUTCOME MEASURES AND TERMINOLOGY AND INFRASTRUCTURE NEEDS AND SO FORTH. AND TO ME, I THINK THAT CAPTURED WHAT WE WERE LOOKING TO HEAR ABOUT, TO LEARN ABOUT THE LAST COUPLE OF DAYS. AND I APPRECIATE EVERYONE'S CONTRIBUTION. THIS IS REALLY HARD FOR ALL OF US TO TALK ABOUT SOME OF THE TOPICS UNDER DISCUSSION. BUT I THINK EVERYONE'S COMMENTS, HOWEVER THEY WERE EXPRESSED, WERE IMPORTANT FOR THE ENTIRE COMMUNITY TO HEAR BECAUSE WE ARE A TEAM, WHOMEVER USED THAT PHRASE EARLIER. IN CASE SOMEBODY DOESN'T SAY THIS, THE WEBINAR WILL BE MADE AVAILABLE PUBLICLY THROUGH THE NIDCD WEBSITE. AND SO WE'LL LOOK OUT FOR THAT AND I'M SURE WE'LL BE INFORMING THE COMMUNITY WHEN THAT IS GOING TO BE AVAILABLE. THERE WAS SO MUCH TO TAKE IN. I KNOW I'M LOOKING FORWARD TO REVIEWING MANY PARTS OF WHAT WE HEARD OVER THE LAST TWO DAYS. SO JUST THANK YOU TO EVERYONE. THIS HAS BEEN A GLORIOUS COUPLE OF DAYS. CONNIE? >>CONNIE: I CONCUR. A GOOD REVIEW WOULD BE GREAT BUT NOT TODAY. LATER. I JUST WANT TO REALLY THANK EVERYBODY. MATHY SAID THIS IS A REALLY COMPLICATED AND EMOTIONALLY FRAUGHT TOPIC. AND I REALLY APPRECIATE EVERYONE'S ABILITY TO SHARE AND THEIR COURAGE IN SAYING WHAT WAS ON THEIR MINDS OR FROM THEIR EXPERIENCE AND SO ON. SO I WANT TO THANK EVERYONE FOR PARTICIPATING. I THINK IT'S BEEN GREAT. >>JUDITH COOPER: THANK YOU. I CAN'T TELL YOU HOW MUCH WE, THE PLANNERS, APPRECIATE THESE LAST TWO DAYS. AND THE SPIRIT WITH WHICH EVERYONE PARTICIPATED. I DO WANT TO SAY AS FAR AS NEXT STEPS, WHAT CAN YOU EXPECT? LET ME JUST SAY A FEW THINGS. HELEN DID SAY THAT THE WEBINAR WILL BE ON OUR WEBSITE BUT IT WILL ALSO BE UP ON THE NIH VIDEOCAST WEBSITE UNDER ARCHIVED. SO THAT IS WHERE IT WILL LIVE FOREVER. AND WHEN WILL IT BE AVAILABLE? WE HAVE TO DO A LITTLE BIT OF EDITING, IS MY UNDERSTANDING, PROBABLY WILL BE MAYBE A WEEK OR TWO OR SO. BUT IT'S COMING. THAT'S ONE THING. SEVERAL PEOPLE HAVE POINTED NIH NEEDS TOO. SO JUDITH ARE YOU LISTENING? I WANT TO REMIND YOU THAT THERE ARE FIVE INSTITUTES AT THE NIH THAT SUPPORT AUTISM RESEARCH. ONE OF THEM SUPPORTS THE NATIONAL AUTISM DATABASE. WE TALKED ABOUT THE DATABASE. A LOT OF MY COLLEAGUES WERE LISTENING TO THIS WEBINAR. SO A LOT OF YOUR IDEAS WILL GO BACK TO THAT GROUP. AND THEN I WOULD SAY -- I SAID AT THE GIPPING THAT WE HAVE SUPPORTED WORK FOCUSED ON THIS POPULATION AND ALSO ON AUGMENTIVE AND ALTERNATIVE. WE CONTINUE TO. IF YOU HAVE AN IDEA, COME ON AND SUBMIT. ESPECIALLY NEW INVESTIGATORS. WE ARE READY FOR THE NEW TEAM OF NEW IDEAS TO COME ONBOARD. BUT I'M NOT SO NAIVE AS TO THINK THAT THERE AREN'T SOME BIG ISSUES THAT WE NEED TO THINK ABOUT HOW WE MIGHT IMPLEMENT THOSE. AND I MIGHT ALSO JUST ADD THAT WE DO HAVE A NEW NIDCD STRATEGIC PLAN AND ONE OF OUR LIMITED GOALS AND THEMES IS ABOUT TRANSLATIONAL RESEARCH. SO, WE ARE MOVING IN THAT DIRECTION TOO. SO, I HAVE A LOT OF HOPE FOR -- IF WE LOOK DOWN THE ROAD, ANOTHER 10 YEARS, THAT WE WILL SEE THAT THIS MEETING LED TO SOME REALLY IMPORTANT ISSUES. THANK YOU VERY MUCH FOR YOUR PARTICIPATION. [ BACKGROUND NOISE ] >>IS SOMEONE NEEDING TO SAY ONE MORE THING? [ BACKGROUND NOISE ] >>INGLE ANNA IS NOT ON MUTE. SHE IS SUPPORTING HER SON IS MY HYPOTHESIS. >>SO I WANT TO SAY THANK YOU AND WE'LL BE IN TOUCH. >>THANK YOU ALL.