>> GOOD AFTERNOON, EVERYONE. I'M TOM INSEL, THE CHAIRMAN OF THE INTERAGENCY AUTISM COORDINATING COMMITTEE, WHICH IS THE GROUP THAT IS HOSTING TODAY'S SPECIAL LECTURE. THIS IS AN EVENT FOR AUTISM AWARENESS MONTH, WHICH IS THE MONTH OF APRIL. EACH YEAR WE DO SOMETHING THAT TRIES TO BRING INCREASING AWARENESS TO THE PUBLIC, AND ESPECIALLY TO THE NIH PUBLIC, ABOUT AUTISM, WHICH IS AN ISSUE THAT INVOLVES MANY, MANY DIFFERENT PARTS OF NIH. IT'S A TRADITION WHEN YOU DO INTRODUCTIONS FOR SCIENTIFIC LECTURES TO BEGIN BY DESCRIBING THE BIOGRAPHY OF THE PERSON WHO'S GOING TO SPEAK, BUT I'M ACTUALLY NOT GOING TO DO THAT BECAUSE JOHN ELDER ROBISON WILL DO A MUCH BETTER JOB OF TELLING YOU HIS OWN BIOGRAPHY THAN I COULD EVEN PRETEND TO DO. WHAT I'LL DO INSTEAD IS JUST TO TAKE A MOMENT TO LET YOU KNOW A LITTLE BIT ABOUT THIS INTERAGENCY AUTISM COORDINATING COMMITTEE, IACC, BECAUSE IT IS A BIT UNUSUAL FOR THOSE OF YOU WHO DON'T GET INVOLVED IN AUTISM POLICY ISSUES. THIS IS A COMMITTEE THAT WAS MANDATED BY CONGRESS BACK IN 2000 WITH THE CHILDREN'S HEALTH ACT, AND IT'S BEEN RE-AUTHORIZED IN 2006 AND AGAIN IN 2009, AND IN EACH CASE, THE IDEA WAS TO CREATE A GROUP OF BOTH FEDERAL AND NON-FEDERAL MEMBERS, NOW UP TO A TOTAL OF 30, 1 15 FEDERAL AND 15 NON-FEDERAL MEMBERS WHO MEET ON A REGULAR BASIS TO DO THREE THINGS, TO ADVISE THE SECRETARY OF HEALTH AND HUMAN SERVICES ABOUT WHAT SHE NEEDS TO KNOW ABOUT AUTISM ACTIVITIES IN THE FEDERAL GOVERNMENT OR SOMETIMES OUTSIDE THE FEDERAL GOVERNMENT, TO COORDINATE ACROSS THE VARIOUS AGENCIES THAT ARE INVOLVED AND THE 15 FEDERAL MEMBERS CROSS OVER THE DEPARTMENT OF DEFENSE, THE DEPARTMENT OF EDUCATION AND MANY, MANY DIFFERENT PARTS OF THE DEPARTMENT OF HEALTH AND HUMAN SERVICES, SO IT'S VERY BROAD AND VERY DIVERSE KIND OF COMMITTEE IN THAT SENSE. AND THE THIRD THING WE DO IS TO, IN SPIRIT OF TODAY'S LECTURE, TRY TO INCREASE INFORMATION OR INCREASE AWARENESS FROM THE PUBLIC ABOUT ISSUES RELATED TO AUTISM. SOME OF THAT MEANS BRINGING THE PUBLIC INTO OUR MEETINGS AND MAKING SURE THE MEETINGS ARE ENTIRELY TRANSPARENT. SOME OF IT MEANS REACHING OUT TO THE PUBLIC AND MAKING SURE THEY HEAR ABOUT NEW RESEARCH, NEW POLICY ISSUES, ISSUES IMPORTANT FOR SERVICES FOR PEOPLE ON THE AUTISM SPECTRUM. JOHN ELDER ROBISON IS A MEMBER OF THAT COMMITTEE AND HAS BEEN A VERY ACTIVE PART OF WHAT WE DO, AND ONE OF THE MESSAGES THAT HE HAS HELPED THIS COMMITTEE TO UNDERSTAND AND I THINK WE'LL HEAR MORE ABOUT THIS FROM HIM IN JUST A MOMENT IS THAT IN A WAY THAT NIH TENDS TO THINK ABOUT AUTISM, EITHER AS A DISORDER, PERHAPS AS A DISABILITY, JOHN HAS REALLY HELPED US TO REMEMBER THAT IT'S ESSENTIALLY A DIFFERENCE AND THAT THERE'S MUCH THAT WE CAN LEARN FROM PEOPLE ON THE AUTISM SPECTRUM, NOT SO MUCH IN TERMS OF WHAT THEY CAN'T DO BUT IN TERMS OF WHAT THEY CAN DO THAT MAKES THEM SPECIAL. AND HE'S HELPED THE ENTIRE COMMITTEE AND I MUST SAY NOW IN MANY WAYS TH THE ENTIRE COUNTRY TO UNDERSTAND THAT THROUGH A SERIES OF PUBLICATIONS. HE IS THE AUTHOR OF "LOOK ME IN THE EYE," WHICH WAS PUBLISHED IN 2007, AND FOR THOSE WHO HAVEN'T READ THIS BOOK, THERE MAY BE NO BETTER TEXT TO INTRODUCE YOU TO WHAT IS A DIFFERENT WAY OF SEEING THE WORLD, THE WORLD THROUGH THE VIEWS OF SOMEBODY ON THE AUTISM SPECTRUM. HE'S ALSO THE AUTHOR OF "BE DIFFERENT," WHICH WAS PUBLISHED IN 2010, AND MOST RECENTLY OF RAISING CUBBY, WHICH YOU CAN SEE HERE ON THIS SLIDE AND HAS BEEN JUST RECENTLY PUBLISHED, I THINK HE'S GOING TO TELL US A BIT ABOUT WHAT IS IN THAT NEW BOOK. ENOUGH. RATHER THAN TAKING ANY MORE OF HIS TIME, I'M SURE YOU'RE HERE TO HEAR FROM HIM AND NOT FROM ME, AT LEAST I AM, AND I'M ASSURED ALL OF US ARE IN FOR A TREAT TODAY TO HAVE JOHN WITH US. IT IS REALLY A GREAT HONOR TO BE ABLE TO INTRODUCE YOU AND I HOPE YOU WILL ALL JOIN ME IN WELCOMING JOHN ELDER ROBISON. THANK YOU. [APPLAUSE] >> WELL THANK YOU FOR COMING OUT TO SEE ME HERE TODAY AND THANKS TO ALL THE FOLKS HERE AT NIH AND EVERYONE WHO'S MADE THIS POSSIBLE. ON THE IACACC, WE HAVE THIS PERIOD OF PUBLIC COMMENT, AND SO FOR THE PUBLIC COMMENT, PEOPLE CAN SEND IN WRITTEN COMMENTS AND THEY CAN GET UP IN FRONT OF THE PODIUM HERE AND THEY CAN SAY WHAT THEY WANT TO THE COMMITTEE MEMBERS, BUT THEY GOT THIS SORT OF RULE THAT PEOPLE HAVE TO WRITE OUT WHAT THEY'RE GOING TO SAY BEFOREHAND. AND SO IN THE SPIRIT OF THAT, I WROTE OUT WHAT I WAS GOING TO TALK WITH YOU FOLKS ABOUT TODAY. I DON'T REALLY EVER DO THAT, THOSE OF YOU WHO COME TO MY TALKS, BUT I DECIDED THAT I WOULD DO IT FOR YOU NOW. HOWEVER, WHAT I WROTE IS NOT ENTIRELY SUITABLE BECAUSE YOU'VE BEEN LED TO BELIEVE THAT I'LL INTRODUCE MYSELF AND TELL YOU OF MY BACKGROUND AND ALL THAT KIND OF STUFF, SO I GUESS I'LL START WITH THAT. SO I GREW UP IN THE 1950s AND 1960s. BEFORE THE KIND OF AUTISM THAT I'M TOUCHED BY WAS REALLY RECOGNIZED IN THE WORLD. PEOPLE LIKE ME, AND THERE ARE LOTS OF US, GREW UP BEING TOLD THAT WE WERE STUPID, LAZY, DEFIANT OR DIFFERENT. I CERTAINLY -- I CERTAINLY WAS VERY LONELY AS A CHILD. I WAS A KID WHO NEVER KNEW WHAT TO SAY. I TRIED TO MAKE FRIENDS AND WHEN I TRIED TO MAKE FRIENDS, I ALWAYS DID THE WRONG THING, AND SOMETIMES THE KIDS WOULD WHACK AT ME AND I WOULD CONTINUE TO -- WITH MY EFFORTS TO MAKE FRIENDS WITH THE PROTECTIVE BENEFIT OF A STICK, AND I WOULD GET INTO MORE TROUBLE WHEN I DID THAT. EVEN THOUGH IT WAS THOSE OTHER CHILDREN WHO HAD MAKE THE STICK NECESSARY IN THE FIRST PLACE. I DIDN'T REALLY HAVE FRIENDS RIGHT THROUGH GRADE SCHOOL. AND THAT IS PURELY A WAY THAT AUTISM IS DISABLING. MANY, MANY YOUNG PEOPLE GROW UP EXACTLY THE SAME AS ME, FEELING ALONE AND FRIENDLESS, AND IF YOU'RE SOMEBODY WHO'S 8 OR 10 YEARS OLD AND YOU SEE EVERYONE INVITED TO RUN TOGETHER, PLAY ON THE PLAYGROUND, AND YOU ARE THE KID THAT THEY POINTEDLY DON'T WANT WITH THEM, YOU CAN'T HELP BUT FEEL YOU'RE DEFECTIVE, NO MATTER WHAT KIND OF SPIN YOUR PARENTS TRY AND PUT ON THE STORY, AND WHEN I BEGAN SPEAKING AND WRITING ABOUT AUTISM YEARS LATER, THAT WAS A GROUP I PARTICULARLY WANTED TO SPEAK ON BEHALF OF BECAUSE I KNEW FROM MY OWN LIFE THAT WHEN YOU'RE YOUNG, ALL YOU FEEL IS THE WEIGHT OF THAT DISABILITY AND ALL YOU FEEL IS THE STING OF REJECTION AND HOW CAN YOU POSSIBLY KNOW THAT THERE'S A BETTER FUTURE OUT THERE FOR US. AND INDEED THE FIRST GLIMMER OF THAT CAME FROM ME WHEN I WAS 13 YEARS OLD, AND AT THAT TIME I STILL DIDN'T HAVE FRIENDS. MY PARENTS GAVE ME A COMPUTER KIT. AND BACK IN THOSE DAYS, A COMPUTER KIT WASN'T A COMPUTER, LIKE YOU USED TO. IT WAS A BUNCH OF TRANSISTORS AND RESISTORS AND YOU PUT IT TOGETHER AND MADE SORT OF AN ELECTRONIC SLIDE RULE. I PUT IT TOGETHER, OF COURSE IT DIDN'T WORK. MY PARENTS WERE AT THE UNIVERSITY OF MASSACHUSETTS AND THEY INTRODUCED ME TO THE ENGINEERING LAB THERE WHERE THE GRAD STUDENTS TURNED OUT TO BE OLDER AND SLIGHTLY MORE SOCIALIZED VERSIONS OF ME. THEY TOO DIDN'T HAVE ANY FRIENDS AND THEY TOO WERE KIND OF SOCIAL REJECTS AND I QUICKLY LEARNED THAT THEY WERE DELIGHTED TO HAVE ME AROUND BECAUSE THEY WERE REGULAR COLLEGE STUDENTS SUBJECT TO ACADEMIC DISCIPLINE AND EVEN THE ACTION OF THE POLICE, AND I, AS THE CHILD OF A PROFESSOR, WASN'T SUBJECT TO ANY REGULATION WHATSOEVER. SO THEY WERE ABLE TO SAY TO ME, SEE IN THIS BOOK HERE, THE PICTURES OF CRATERS ON THE MOON, YOU COULD PROBABLY REPLICATE THOSE CRATERS IF YOU WERE TO GO TO THE TOP OF THE NEW GRAD RESEARCH CENTER AND ROLL THE BARRELS OF ROOFING TAR OFF THE ROOF AND LET THEM HIT THE PARKING LOT. SO I WAS ABLE TO GO DO STUFF LIKE THAT AND SOMETIMES THE CAMPUS POLICE WOULD CHASE ME BUT I COULD ALWAYS OUTRUN THEM. I MEAN, WHAT 14-YEAR-OLD CAN'T OUTRUN, YOU KNOW, A COP GOING UP THE STAIRS IN A BUILDING LIKE THAT. I BEGAN TO SPEND ALL MY TIME STUDYING ELECTRONICS, AND THAT WAS WHERE THE FIRST GLIMMER OF GIFT EMERGED IN ME. I DIDN'T HAVE FRIENDS BECAUSE OF THIS AUTISTIC DISABILITY. AND BECAUSE I DIDN'T HAVE FRIENDS, I HAD NOTHING TO STOP ME FROM SPENDING ALL MY DAYS AND ALL MY NIGHTS IN THE STUDY OF WHAT I QUICKLY CAME TO LOVE, AND THAT WAS ELECTRONICS AND MUSIC. BECAUSE OF THIS AUTISM, I HAD WHAT PSYCHOLOGISTS CALL SPECIAL INTERESTS, AND MY SPECIAL INTEREST WAS ELECTRONICS. WHEN PROFESSIONALS TALK ABOUT SPECIAL INTERESTS IN CHILDREN, THEY PATHOLOGIZE THEM AS IF IT'S A DISEASE WE HAVE. INDEED SOME SPECIAL INTERESTS CAN PREVENT YOU FROM DOING THE ORDINARY THINGS YOU NEED TO GET BY IN LIFE. BUT FOR ME AT AGE 13, A SPECIAL INTEREST IN ELECTRONICS MEANT THAT COMBINED WITH MY SOCIAL ISOLATION, I IMMERSED MYSELF IN ELECTRONICS AND I BEGAN STUDYING SIX, EIGHT, 10 HOURS A DAY. I STOPPED GOING TO SCHOOL, I STOPPED GOING TO MY CLASSES AND ALL I DID WAS STUDY WHAT I LOVED. AND WHILE YOU MIGHT HEAR THAT, YOU MIGHT THINK WELL THAT IS A DISABILITY IF YOU STOPPED GOING TO SCHOOL. THINK ABOUT WHAT HAPPENED AFTER THREE, FOUR, FIVE YEARS OF THAT. I HAD SPENT THOUSANDS AND THOUSANDS OF HOURS STUDYING ELECTRONICS AND MUSIC. I HAD SPENT MORE TIME BY THAT TIME STUDYING WHAT I LOVED THAN MANY OF YOU SPENT TO GET A DOCTORATE IN YOUR OWN FIELD. AND ALL THAT BY THE TIME I WAS WHAT, 16, 17 YEARS OLD. I WENT THROUGH A NUMBER OF PHASES. I STARTED OUT WITH WHAT I MIGHT CALL MY DESTRUCTIVE PHASE, WHERE I SACRIFICED EVERY PIECE OF ELECTRONICS I COULD GET MY HANDS ON IN THE NAME OF NONL, AND NEN I WENT INTO MY REPAIRMAN PHASE THAT I WAS SO PROUD, I COULD FIX STUFF. THAT WAS WHERE I BEGAN TO SEE A FUTURE FOR ME BECAUSE I BEGAN REPAIRING GUITAR AMPLIFIERS AND EQUIPMENT FOR LOCAL BANDS AND MUSICIANS. FROM THERE I WENT ON TO THIS COPYING PHASE WHERE I COULD DUPLICATE SOMETHING. IF YOU SHOWED ME AN AMPLIFIER I COULD MAKE YOU ANOTHER ONE FROM PARTS. AND I WAS SO PROUD OF THAT. THE FINAL PHASE, AND I GUESS IT'S A PLACE YOU HOPE TO GET TO WHEN A PLACE LIKE THIS HIRES YOU, IS I COULD CREATE STUFF OUT OF THIN AIR. TO DO THAT, I TAUGHT MYSELF OVER A PERIOD OF YEARS WHAT THE WAVE FORMS OF MUSICAL INSTRUMENTS LOOKED LIKE. I TAUGHT MYSELF HOW TO DISTINGUISH A BASE FROM CYMBALS AND HOW TO READ THE RHYTHM OF THE MUSIC WHEN THE SCOPE WAS SET SLOW AND HOW TO LOOK AT THE PATTERNS OF THE INDIVIDUAL INSTRUMENTS WHEN I SPED IT UP. I TAUGHT MYSELF HOW DIFFERENT CIRCUITS ALTERED THOSE WAVES, AND THEN I TAUGHT MYSELF HOW THOSE ALTERED WAVES WOULD SOUND. SOMETIMES PEOPLE HEAR THESE STORIES OF ME DOING THAT AND THEY THINK I HAVE SOME SORT OF GOD GIVEN ABILITY TO SEE INTO CIRCUITS AND I WAS BORN WITH IT. NOTHING COULD BE FURTHER FROM THE TRUTH. I HAVE NO NATURAL ABILITY TO RELATE WAVE FORMS ON A SCREEN OR PICTURES ON A PAPER WITH SOUNDS IN THE AIR. WHAT I HAD, THOUGH, WAS I HAD THIS DISABILITY. I DIDN'T HAVE A SOCIAL LIFE, I HAD A LAB AT MY PARENTS' UNIVERSITY. THAT LAB HAD SCOPES AND I HAD ALL THE TIME IN THE WORLD, AND I JUST SAT THERE AND I STUDIED IT AND I STUDIED IT AND I STUDIED IT UNTIL I COULD HEAR IT THROUGH MY EARS AND I COULD SEE A PICTURE IN MY MIND, AND I COULD THEN TAKE THAT PICTURE AND I COULD MODIFY IT IN A CIRCUIT IN MY MIND, AND I COULD IMAGINE WHAT IT WOULD LOOK LIKE AND WHAT IT WOULD SOUND LIKE, AND WHEN I BUILT IT, IT SOUNDED LIKE I IMAGINED. AND I HAVE TO ADMIT, IT DIDN'T ALWAYS SOUND LIKE I IMAGINED. SOMETIMES IT WENT UP IN SMOKE. SOMETIMES IT WENT SPECTACULARLY WRONG. BUT THE THING IS, I LEARNED FROM THOSE MISTAKES. AND THE MORE IMAGINING I DID, THE CLOSER MY IMAGINATION CAME TO THE REALITY. SO YOU MIGHT WONDER WHERE MIGHT YOU HEAR THOSE SORTS OF THINGS THAT I IMAGINED AND YOU CAN HEAR THOSE ON RECORDINGS. I WORKED FOR PINK FLOYD SOUND COMPANY BY THE LATE 70s, AND YOU CAN HEAR MY NOISES ON RECORD ALBUMS, YOU CAN HEAR MY ELECTRONIC FLANGING NOISES HAVE BEEN PLAYED FOR JUST MILLIONS AND MILLIONS OF PEOPLE IN THE RECORDING INDUSTRY. YOU CAN HEAR THE THINGS THAT WE CREATED WITH LIVE SOUND SYSTEMS. WE WERE THE VERY FIRST PEOPLE IN THE WORLD TO MAKE FOUR AND FIVE AND SIX WAY CROSSOVERS TO MAKE HIGH POWER LOUD SOUND REINFORCEMENT POSSIBLE IN THE 70s. THAT WAS KIND OF THE PINNACLE OF ENGINEERING OF HIGH POWERED SOUND SYSTEMS. YOU MIGHT SAY WHY WOULD I SAY IT WAS THE PINNACLE? JUST BECAUSE I WAS THERE 30 YEARS AGO? NO, THAT'S NOT RIGHT. THE REASON IT WAS THE PINNACLE IS THAT WAS BEFORE THE GOVERNMENT GOT INVOLVED AND THERE WERE LAWS, BECAUSE WHEN I DID ROCK AND ROLL, THEY DIDN'T HAVE ANY SUCH THING AS KNOWLEDGEABLE PEOPLE AND SOUND LEVEL LAWS. WE WOULD EVERY NOW AND THEN GET LIKE A BUILDING INSPECTOR OR WE'D GET A FIRE MARSHAL, HE'D COME IN AND HE'D ASK ME HOW LOUD ARE WE PLAYING? AND I WOULD PICK UP MY METER AND I WOULD SWITCH ON THE 20DB PAD SO IT COULD BE THE LEVEL RIGHT BEHIND A JET ENGINE ON TAKEOFF AND IT WOULD STILL SHOW A SAFE LEGAL LEVEL, YOU KNOW? AND SO WE WERE ABLE TO PLAY UNREGULATED, LOUD ELECTRIC ROCK AND ROLL, AND IT WAS SOME OF THE MOST POWERFUL STUFF I THINK THE WORLD HAS EVER KNOWN IN MODERN TIMES. AND WHEN I LOOK BACK ON THAT, I REALIZE THI IT WAS AUTISM THAT MADE THIS POSSIBLE. AUTISM MADE ME A MISFIT LONELY KID THAT FELT LIKE I WAS A LOSER AND I WAS NEVER GOING TO GO ANYWHERE, BUT AT THE SAME TIME, FREED OF SOCIAL COMPLEXITIES AND POSSESSED OF THIS CONCENTRATION, I DIDN'T START OUT AS ANY KIND OF MUSICAL GENIUS WHEN I STARTED OUT IS AS A LONELY KID, JUST DOING WHAT HE LOVED, AND IT WAS AUTISM THAT MADE THAT SUCCESS POSSIBLE. AND THEN SO MUCH OF WHAT WE SEE IN THE WORLD TODAY HAS BEEN BROUGHT, BROUGHT TO US BY PEOPLE LIKE ME. IN FACT, IN THE MUSIC BUSINESS, THE THING I'M BEST KNOWN FOR ISN'T EVEN THE SOUND EFFECT STUFF, EVEN THOUGH SOUND EFFECT STUFF HAS ENTERTAINED SOME MILLIONS OF PEOPLE. IT'S THE STUFF THAT I DID FOR KISS. SOME OF YOU PROBABLY WERE KISS FANS. WELL, YOU KNOW, NOW ACTUALLY THE AUDIENCES GET YOUNGER AND THEY DON'T WANT TO ADMIT IT ANYMORE, BUT I STILL KNOW THERE'S SOME OF YOU OUT THERE THAT LISTEN TO OUR STUFF. AND WHAT I DID WITH THEM IS THEY ACTUALLY CAME IN TO OUR STUDIO IN NEW YORK, THEY WANTED TO RENT A MONITOR SYSTEM AND I GOT TALKING TO GUITAR PLAYER WHO WANTED TO MAKE A GUITAR BLOW FIRE AND I TOLD HIM I COULD DO THAT. AND SO WHEN I BROUGHT HIM HIS SMOKING GUITAR AND HE TOOK THAT OUT ON STAGE AND PLAYED IT, THAT WAS THE MOST MAGICAL MOMENT FOR ME BECAUSE I SAW THAT GUITAR IN EVERY BIG CONCERT VENUE IN THE WORLD. MADISON SQUARE GARDEN, NEW YORK CITY, CAPITAL CENTER IN LANDOVER MARYLAND, WHEN WE PLAYED D.C., WE PLAYED CAPITAL CENTER, BIG CIVIC CENTER. I'D COME INTO THESE PACKED HALLS AND THE AUDIENCES WOULD JUST ROAR WHEN THOSE GUITARS OF MINE CAME OUT, AND I WAS JUST SO PROUD, YOU KNOW, THAT THERE I WAS, THIS LOSER KID, PEOPLE SAID TO ME IN HIGH SCHOOL, EVEN THE ARMY WON'T TAKE YOU BECAUSE YOU'RE A HIGH SCHOOL DROPOUT, BUT THE MUSIC, YOU KNOW, IS REALLY WHAT SET ME FREE. AND TODAY, OF COURSE, I SAY THAT TO PEOPLE, THEY ASK WHERE CAN WHO'S DIFFERENT FIND A HOME? AND I ALWAYS THINK OF MUSIC AND THE THEATER, BECAUSE THE WONDERFUL THING ABOUT THAT IS IT DOESN'T MATTER WHAT YOU LOOK LIKE OR WHAT YOU SOUND LIKE, BUT AS LONG AS YOU DON'T SMELL TOO EXCEPTIONALLY BAD, YOU KNOW, IF YOU CAN MAKE BEAUTIFUL MUSIC AND YOU CAN MAKE THE SCENES IN THE THEATER, EVEN IF YOU'RE THE GUY STANDING IN THE BACK AND YOU CAN CALL THE SPOTLIGHTS AND YOU CAN COLOR THE STAGE IN BEAUTIFUL COLORS, YOU'VE GOT A HOME THERE. AND IT'S JUST A WONDERFUL THING FOR PEOPLE LIKE US. BUT IT CAME TO AN END BECAUSE OF AUTISM. SO ONCE AGAIN, WE HAD DISABILITY AS A CHILD, AND I HAD AN AUTISTIC GIFT THAT SET ME FREE AS A YOUNG ADULT, BUT I COULDN'T UNDERSTAND WHAT PEOPLE THOUGHT ABOUT THE STUFF I WAS CREATING. SO I WENT FROM WORKING IN MUSIC TO WORKING IN A REGULAR JOB IN ELECTRONICS BECAUSE I WAS SCARED TO TAKE THE PLUNGE AND MOVE TO L.A. OR NEW YORK, WHICH IS THE CENTER OF THE WORLD IN MUSIC. I WAS AFRAID PEOPLE WOULD FIND OUT I WAS JUST THIS NOTHING HIGH SCHOOL DROPOUT AND I HAD NO SKILLS AND THEY'D FIRE ME AND I'D BE THOUSANDS OF MILES FROM HOME AND I'D BE STARVING. SO I QUIT. I TOOK A JOB AT MILTON BRADLEY, WHO AT THE TIME WAS THE BIGGEST ELECTRONIC TOY AND GAME COMPANY IN THE WORLD. AND I BECAME A STAFF ENGINEER AND I WORKED ON SOUND EFFECTS. AND INDEED IF YOU WERE A FAN OF ELECTRONIC GAMES IN THE 70s AND 80s, YOU SURELY HEARD MY SOUND EFFECTS BECAUSE THE EFFECTS THAT WE MADE WERE REPLICATED AND INTEGRATED INTO CUSTOM CHIPS AND THEY WERE SOLD FOR YEARS AND YEARS AND YEARS AND ALL THOSE DIFFERENT THINGS. BUT LIKE I SAID, DISABILITY TOOK IT AWAY FROM ME. BECAUSE I COULDN'T TELL GOOD JOB, FIRST, I BELIEVE BECAUSE OF WHAT I HEARD AS A CHILD I WAS REALLY JUST THIS NOTHING, AND I BELIEVED I WASN'T A REAL ENGINEER, I WAS JUST SOMEBODY WHO GOT LUCKY, LIKE PEOPLE SAID TO ME, AND I THOUGHT THE BEST THING I COULD DO WAS QUIT BEFORE MILTON BRADLEY FIRED ME. AND SO I QUIT ELECTRONICS. AND NOW WHEN I LOOK BACK ON THAT, I REALIZE THAT'S A PERFECT EXAMPLE OF HOW AUTISTIC DISABILITY COULD TAKE A CAREER AWAY FROM SOMEBODY AND YOU'D NEVER EVEN KNOW IT, BECAUSE ANYONE WHO WOULD HAVE LOOKED AT ME BACK THEN, YOU WOULD HAVE THOUGHT I WAS LIKE A -- SORT OF A RISING STAR IN THE COMPANY. I WAS A SUCCESSFUL ENGINEER, I WAS A SENIOR STAFF ENGINEER, THE TOP LEVEL OF ENGINEER IN THE COUNTRY, MY SOUNDS WERE IN EVERY TOY THAT THEY WERE SELLING, AND YET SOMEHOW I BELIEVED I WAS A FAILURE. AND IT WAS BECAUSE OF THIS AUTISM, IT WAS BECAUSE I COULDN'T LOOK AT OTHER PEOPLE AND TELL WHAT THEY WERE THINKING OF ME, SO I ASSUMED THE WORST. I ASSUME THEY WERE THINKING I WAS JUST A LOSER AND THEY COULDN'T WAIT TO FIRE ME AND I SHOULD JUST GET OUT. THE IRONY OF THAT IS THAT I DIDN'T EVEN UNDERSTAND THAT. UNTIL 30 YEARS PASSED. AND I LEARNED ABOUT AUTISM IN MYSELF AND THE DISCOVERY SCIENCE CHANNEL CAME AND THEY DID A TV SHOW ABOUT ME. AND THEY SENT CREWS OUT TO INTERVIEW PEOPLE FROM MY PAST AND THEY WENT AND FOUND THE FORMER PRESIDENT OF MILTON BRADLEY, HE'S ABOUT 80 YEARS OLD NOW, AND THEY SAT HIM DOWN AND ASKED HIM AND HE SAYS I WAS ONE OF THE MOST SUCCESSFUL ENGINEERS THEY EVER HAD. IT WAS JUST SUCH A SHOCKING THING TO REALIZE THAT THE PRESIDENT OF THE COMPANY THOUGHT I WAS ONE OF THE MOST SUCCESSFUL ENGINEERS AND I THOUGHT I WAS GETTING OUT THE DOOR SECONDS BEFORE THEY JUST FIRED ME FOR BEING A FRAUD AND A FAILURE. AND IT'S THE PERFECT ILLUSTRATION OF HOW SOARNL SOCIAL DISABILITY CAN CRIPPLE THE MOST ARTICULATE AND SEEMINGLY SMART AND SUCCESSFUL PERSON. YOU WOULD NEVER, EVER GUESS THAT. YOU THINK WELL, I WANT MY SON WITH AUTISM TO BE ABLE TO GROW UP AND GET A JOB. THERE I WAS AND I HAD A JOB AND I WALK THE AWAY FROM IT. HOW COULD YOU EVER HAVE THOUGHT THAT? AND SO I STARTED A BUSINESS FIXING CARS. AND YOU KNOW WHY I DID THAT, BECAUSE I WANTED TO DO SOMETHING WHERE I COULDN'T GET FIRED BECAUSE I BELIEVED THAT I HAD FAILED IN MUSIC AND I BELIEVED THAT I HAD FAILED IN CONSUMER ELECTRONICS WITH MILTON BRADLEY, AND OF COURSE NOW I LOOK BACK ON THOSE TIMES AND ALL THOSE THINGS I MADE, PEOPLE SAID TO ME, YOU KNOW, YOU'RE NOT A REAL ENGINEER, YOU'RE JUST A FAKE AND YOU'RE JUST LUCKY. BUT ALL THAT STUFF HAS STOOD THE TEST OF TIME, YOU KNOW? YOU CAN LISTEN TO ALL THOSE THINGS I MADE ON THOSE RECORD ALBUMS AND YOU CAN SEE THAT STUFF IN THE VIDEOS AND YOU CAN SEE AND HEAR THOSE VIDEO GAMES, AND IT'S ALL REAL, IT ALL WORKS. BUT BECAUSE OF SOCIAL DISABILITY, I BELIEVED IT WAS ALL A FAKE, THAT I THREW IT ALL AWAY. SO I STARTED THIS BUSINESS WITH CARS BECAUSE NOBODY WOULD ASK ME FOR MY QUALIFICATIONS FIXING AN AUTOMOBILE. AND THE BUSINESS WAS SUCCESSFUL, AND IT WAS THERE AT THAT BUSINESS THAT I GOT TO KNOW A THERAPIST WHO OWNED A LAND ROVER ONE DAY IN THE MID 90s, HE WALKS IN AND HE TELLS ME ABOUT THIS ASPERGER THING AND HE SAYS I COULD BE THE POSTER BOY FOR IT. AND THAT WAS WHAT STARTED ME ON THE JOURNEY THAT LED ME HERE. BECAUSE WHEN I LEARNED ABOUT ASPERGER'S, FOR THE FIRST TIME IN MY LIFE, I KNEW WHY I HAD FAILED SOCIALLY FOR ALL THESE YEARS. I HAD ALWAYS BELIEVED THAT I WAS THIS LOSER AND A REJECT, AND FOR THE FIRST TIME, FOR THE FIRST TIME I SAW THAT I WAS NOT A LOSER AND A REJECT, I WAS JUST A GUY WITH ASPERGER'S AND I WAS BEING LIKE EVERY OTHER GUY WITH ASPERGER'S WAS. AND WHEN I READ TONI ATWOOD'S BOOK, ASPERGER'S SYNDROME AND SAW ALL THE THINGS THAT PEOPLE LIKE US DON'T DO AND THE THINGS WE DO DO THAT NO ONE EXPECTS, I RESOLVED, BY GOD, I'M GOING TO MAKE MYSELF NORMAL. YOU KNOW, IT TOOK ME A NUMBER OF YEARS BUT THE TRANSFORMATION IN MY SOCIAL LIFE WAS ALMOST -- JUST MAGICAL. I WENT FROM HAVING NO FRIENDS TO HAVING FRIENDS EVERYWHERE. IT WAS JUST THE MOST AMAZING THING, AND TODAY I HAVE FRIENDS EVERYWHERE I GO. I COME DOWN HERE TO WASHINGTON, D.C. AND ALL -- AND PEOPLE HERE AND ALL OF YOU, YOU'VE ALL WELCOMED ME. THE FOLKS IN BACK, THE FOLKS I WAS TALKING TO EARLIER IN THE DAY, IT'S MAGICAL. BECAUSE YOU KNOW, I DIDN'T GET NICER, I DIDN'T TURN INTO BE SOMEBODY ELSE, I DIDN'T BECOME FAKE, SWEET AND SMILEY. I'M THE SAME PERSON I ALWAYS WAS, BUT THE DIFFERENCE IS I HAVE LEARNED NOT TO DO THE TOTALLY WEIRD AND BIZARRE STUFF THAT USED TO DRIVE PEOPLE AWAY, I'VE LEARNED TO LET PEOPLE INTO MY WORLD, AND I HAVE REALIZED THAT THAT SOCIAL ISOLATION THAT HURT ME SO, SO BAD WHEN I WAS A LITTLE BOY, THAT I ULTIMATELY BECAME A PRISONER IN MY OWN MIND AND I AM NOW LEARNING HOW TO GET OUT OF IT. AND THAT'S SUCH AN IMPORTANT MESSAGE. THAT'S WHY I TOOK UP WRITING AND SPEAKING ON BEHALF OF YOUNG PEOPLE WHO ARE DIFFERENT. I WANTED THEM TO SEE THAT THERE IS A BRIGHT FUTURE FOR US. I WANTED THEM TO SEE THAT WHEN YOU'RE YOUNG, YOU ONLY SEE DISABILITY AND HOW IT HURTS YOU, BUT THE VERY SAME THINGS THAT HURT YOU CAN MAKE YOU SPECIAL. AND YOU KNOW, I WROTE DOWN -- THIS IS VERY DISAPPOINTING, YOU KNOW, BECAUSE I SPENT A LOT OF TIME WRITING THIS. I WROTE THIS 3,000-WORD THING THAT I WAS GOING TO READ ALL YOU PEOPLE AND IT GOT DERALLIED HERE WITH THIS INTRODUCTION. BUT ANYWAY, I WANTED TO GO OUT AND SHOW THAT THERE ARE TWO SIDES TO THIS. THAT'S ONE OF THE MESSAGES THAT I WANT TO BRING YOU FOLKS TODAY. WHEN YOU WORKED WITH ALMOST EVERY OTHER DISORDER OR EVERY DISEASE, YOU ARE ATTACKING WHAT IS ESSENTIALLY AN ENEMY OF MANKIND, YOU KNOW, WHEN SOMEBODY SAYS I'VE GOT THE FLU, YOU TURN TO THEM AND SAY, OH, BOY, THE FLU SUCKS, DOESN'T IT? AND YOU AGREE, AND YOU HATE IT. AND THOSE OF YOU WHO ARE SCIENTISTS HERE OR AT CDC, YOU THINK, IF I COULD ERADICATE THAT FROM THE WORLD, I COULD WIN A NOBLNOBEL PRIZE BUT I'D BE DOING A GREAT THING FOR HUMANITY FOR JUST GETTING RID OF IT. THERE'S NOTHING GOOD ABOUT FLU OR NOTHING GOOD ABOUT CANCER THAT YOU SEE. YOU JUST WANT TO GET RID OF IT. AND THEN WE GET INTO THIS SORT OF GRAY AREA WHERE THEY TALK ABOUT BIRTH DEFECTS, AND THERE AGAIN, THEY MOSTLY, MOSTLY ARE DISABLING AND YOU MOSTLY WANT TO GET RID OF IT. AND THEN WE HAVE THESE NEUROLOGICAL DIFFERENCES. WE HAVE THINGS LIKE AUTISM, WE HAVE ITS CLOSE COUSIN, ATTENTION DEFICIT DISORDERS, AND AT FIRST, PEOPLE TALKED ABOUT THOSE AS IF THEY WERE DISEASES TO BE CURED. INDEED, AT IACC, WE TALK ABOUT HOW THERE MAY BE DISEASE PATHWAYS INTO SERIOUS AUTISTIC DISABILITY. BUT WHAT'S UNIQUE ABOUT AUTISM IS THAT AUTISM, RATHER THAN CHANGING THE BODY EXTERNALLY, IT CHANGES THE WIRING OF OUR BRAINS VERY SUBTLELY INSIDE. SOME PEOPLE WITH AUTISM ARE CRUSHED BY A LIFELONG BURDEN OF DISABILITY. THEY HAVE SERIOUS INTELLECTUAL FUNCTIONING CHALLENGES, THEY HAVE DIFFICULTY TAKING CARE OF THEMSELVES AND LIVING ON THEIR OWN, AND THEIR PARENTS LOOK AT THEM AND THEY SAY, YOU KNOW, MY GOD, WHAT COULD YOU SAY EXCEPT, YOU KNOW, WE NEED A CURE, WE NEED HELP FOR MY SON OR DAUGHTER. AND I LOOK AT THOSE PEOPLE AND I THINK, WHAT RATIONAL PERSON WOULD DISAGREE WITH THEM? YOU KNOW, IF WE COULD REACH INTO THEIR MINDS AND WE COULD DELIVER SOME KIND OF THERAPY THAT WOULD ALLOW THEM TO SPEAK, THAT WOULD ALLOW THEM TO ORGANIZE THEMSELVES AND MANAGE THEIR LIVES AND BEGIN TO FUNCTION INDEPENDENTLY, WHO ON EARTH WOULD OBJECT TO THAT? AND INDEED, WE'RE MOVING IN THAT DIRECTION. I LOOK FOR EXAMPLE AT WHAT WE'RE DOING WITH ASSISTIVE TECHNOLOGIES LIKE, FOR EXAMPLE, WITH iPADs, I GO TO AUTISM CONFERENCES, AND PEOPLE I HAVE SEEN BEFORE THAT WOULD STAND AT THE BACK WHO WERE MUTE, THEY COULD HEAR WHAT I WOULD SAY, BUT THEY COULDN'T TALK, AND THEY WOULD COME UP AND THEY WOULD SPEAK TO ME THROUGH iPADs AND IT'S THE MOST MAGICAL THING BECAUSE I SEE THEM, AND THEY TALK TO ME, AND I ANSWER THEM. AND THEY ANSWER ME BACK. AND IT'S LIKE THERE WAS THIS WHOLE CONVERSATION LOCKED INSIDE THEM AND SUDDENLY WE'VE LET IT OUT. AND I SEE THAT WE HAVE THE PROMISE OF REMEDIATING THAT DISABILITY AND THAT IS ABSOLUTELY ONE OF OUR GREATEST DUTIES HERE. BUT AT THE SAME TIME, WE HAVE TO RECOGNIZE THAT THE AUTISM SPECTRUM IS VERY BROAD, AND THERE ARE OTHER PEOPLE WHO ARE TOUCHED BY AUTISM WHO ARE, LIKE ME, A COMBINATION OF CRIPPLED AND DISABLED. IT'S EASY TO LOOK AT SOMEBODY LIKE ME TODAY AND SAY, WELL, YOU KNOW, YOU'RE SUCCESSFUL, YOU'RE NOT DISABLED AND SO FORTH AND YOU DON'T NEED ANY SERVICES. IT ACTUALLY WORRIES ME GREATLY THAT PEOPLE SEE FOLKS LIKE ME, AND THEY THINK, WELL, IF HE TYPIFIES AUTISM, WHY DO WE NEED TO SPEND HUNDREDS OF MILLIONS OF DOLLARS IN RESEARCH, WHY DO WE NEED ALL OF THESE SERVICES? AND OF COURSE THERE ARE TWO ANSWERS. FIRST OF ALL, WE HAVE A POPULATION THAT'S NOT AS FORTUNATE AS ME, THAT HAS TREMENDOUS NEED OF SERVICES. BUT THE OTHER THING WE HAVE THAT'S A GREAT MYSTERY IS WE HAVE SOME PEOPLE WHO ARE TOUCHED BY AUTISM THAT ARE JUST AS ARTICULATE AS ME, AND SOME OF THESE PEOPLE TEST SEVERAL WHOLE STANDARD DEVIATIONS HIGHER THAN I DO ON I.Q. TESTS. I HAVE SEEN, IN FACT, PEOPLE WITH AUTISM WHO I WOULD BET MONEY WOULD TEST SIGNIFICANTLY HIGHER THAN ANY ONE OF YOU IN THIS ROOM, AND YET, THEY HAVE LIVED THEIR ENTIRE LIVES ON DISABILITY. AND THAT IS THE TERRIBLE DICHOTOMY IN THIS AUTISM THING, YOU KNOW? IT CAN MAKE US DISABLED, IT CAN MAKE US ECCENTRIC AND WONDERFUL, IT CAN HURT US SOCIALLY. ALL TOO OFTEN, THOUGH, AS FUNCTIONAL AS WE SEEM, WE END UP UNEMPLOYED OR UNDEREMPLOYED. WE FOR A VARIETY OF REASONS ARE OFTEN NOT ABLE TO PROGRESS THROUGH THE EDUCATIONAL SYSTEM. YOU HAVE YOUNG PEOPLE HERE THAT CAME FROM IVY MOUNT, A SCHOOL FOR PEOPLE WITH DIFFERENCES, AND PLACES LIKE THAT ARE WONDERFUL. I CAN'T SAY ENOUGH GOOD THINGS ABOUT IVY MOUNT AND THE KIDS THAT'S GRADUATED THAT HAVE COME HERE TO PROJECT SEARCH THAT YOU SEE AROUND NIH, BUT YOU KNOW THERE'S ALL TOO FEW IVY MOUNTS AROUND THE COUNTRY AND THERE'S MILLIONS OF KIDS LIKE ME, AND SOME OF US ARE DROPPING OUT. AND WE SO DESPERATELY NEED TOOLS AND THERAPIES TO HELP ALL OF US. AND THAT'S ONE OF THE THINGS THAT I WANT TO ASK ALL OF YOU TO THINK ABOUT TODAY. YOU'RE GOING TO GO BACK AND YOU'RE GOING TO DO WHATEVER YOU DO THAT RELATES TO AUTISM, AND I WANT YOU TO CONSIDER THAT UNLIKE THE OTHER DISEASES AND DISORDERS THAT YOU WORK WITH, AUTISM CUTS BOTH WAYS. IT BRINGS US EXTRAORDINARY GIFTS AND IT BRINGS US EXTRAORDINARY DISABILITY. ALL TOO OFTEN, WE HAVE NINE DISABLED PEOPLE FOR ONE GIFTED PERSON WITH AUTISM. BUT THERE IS THAT GIFT, BLATANT, IN EVERY ONE OF US, AND SO OUR JOB IS TO FIGURE OUT HOW TO BRING THE GIFT OUT IN THOSE NINE PEOPLE, HOW TO FIND THOSE PEOPLE A PLACE IN THE WORLD, HOW TO MAKE THEM A PART OF OUR SOCIETY. TO SOME EXTENT, WE NEED TO CHANGE SOCIETY TO DO THAT, BUT WE ALSO REALLY NEED TO DEVELOP TOOLS. WE TALK ABOUT ABA IN AUTISM THERAPY, BUT ABA IS ONLY ONE THING, AND ALL ABA DOES IS ADDRESS BASIC BEHAVIORAL ISSUES. AUTISM IS SUCH A COMPLEX DISORDER, WE HAVE MEDICAL COMPLICATIONS, WE HAVE PEOPLE WHO ARE BESET BY HEADACHES, DIGESTIVE TROUBLES, PEOPLE WHO CAN'T SLEEP, PEOPLE WHO HAVE TERRIBLE PROBLEMS WITH ANXIETY AND DEPRESSION. THEN WE HAVE PEOPLE WHO LOOK LIKE ME. PEOPLE WHO ARE VERY ARTICULATE AND WELL SPOKEN, BUT THEY CAN'T GET A GIRLFRIEND THEY CAN'T FORM A RELATIONSHIP, THEY CAN'T GET A JOB, THEY CAN'T KEEP A JOB. AND YOU KNOW, THOSE THINGS ARE JUST AS CRIPPLING. AND WE DON'T HAVE ANY TOOLS TO HELP THOSE PEOPLE, AND IT IS JUST -- YOU KNOW, IT'S REALLY A TRAGEDY. I LOOK AT ALL OF THE MONEY THAT WE HAVE SPENT IN AUTISM RESEARCH, AND I BELIEVE IN SCIENCE AS MUCH AS ANY OF YOU, YOU KNOW, THOSE OF YOU WHO FOLLOW MY CAREER AND ACTIVITIES, I COME HERE TO NIH AND I GO TO CDC AND I VOTE FOR RESEARCH PROPOSALS AND BASIC SCIENCE AND I BELIEVE IN IT WITH ALL MY HEART, BUT I ALSO REALIZE THAT THESE GENETIC STUDIES AND THESE BIOLOGY STUDIES THAT WE CARRY ON HERE WITH WHAT ARE POTENTIALLY 20 AND 30-YEAR TRANSLATION HORIZONS, THEY DON'T MEAN A THING TO A FAMILY WITH A KID THAT WON'T SLEEP AT NIGHT OR A YOUNG ADULT WITH AUTISM THAT CAN'T GET A JOB. WE NEED TO HELP THOSE PEOPLE. AND ONE OF THE THINGS THAT I HAVE PUSHED FOR IN IACC, IT'S VERY UNFORTUNATE, I HAVE THIS BEAUTIFULLY WRITTEN TALK HERE AND IT'S LIKE TOTALLY LOST BECAUSE OF THIS LACK OF INTRODUCTION, YOU KNOW, BUT THERE IT IS. WHAT WE NEED IS TO DEVELOP A VERY, VERY BROAD RANGE OF THERAPIES THAT ADDRESS THE PRACTICAL PROBLEMS THAT PEOPLE WITH AUTISM ARE LIVING WITH TODAY. ONE OF THE KEY THINGS WE NEED TO DO IS ACTUALLY UNDERSTAND THE PRACTICAL PROBLEMS OF PEOPLE WITH AUTISM LIVING TODAY BECAUSE FOR THE PAST 10 YEARS, AUTISM HAS BEEN A CHILD CENTRIC DISORDER. WE HAVE TALKED ABOUT AUTISM, CHILDREN AND SCHOOLS, ALL TOGETHER, AND YOU KNOW, ONE OF THE THINGS YOU'LL SEE IN THE STRATEGIC PLAN AND THE REPORT ON AUTISM FROM THE IACC FOR 2012, WE TALK ABOUT A STUDY BY A FELLOW NAMED BRUGA OVER IN ENGLAND WHERE HE WENT AND HE LOOKED AT THE RATE OF AUTISM IN THE ADULT BRITISH POPULATION. IN THAT STUDY, WHAT HE FOUND IS THAT THIS ONE IN 88, ONE IN 90 RATE OF AUTISM WE TALK ABOUT IN AMERICA IS ESSENTIALLY THE SAME IN THE ADULT ENGLISH POPULATION AND IT'S THE SAME FOR PEOPLE BORN IN THE 80s, THE 70s, THE 60s, THE 50s, THE 40s AND THE 30s. IT SHOWS THAT AUTISM HAS BEEN THERE RIGHT ALONG, AND THE THING THAT WAS MOST INTERESTING ABOUT THAT STUDY IS THAT THE VAST MAJORITY OF PEOPLE WHO WERE IDENTIFIED AS BEING ON THE AUTISM SPECTRUM BY THE RESEARCHERS HAD NO PRIOR DIAGNOSIS OF AUTISM. SO WHEN YOU LOOK AT THAT AND YOU LOOK AT THE EXPLOSION OF AUTISM AWARENESS IN SCHOOLS, YOU HAVE TO REALIZE THAT FOR EVERY CHILD WITH AN AUTISM DIAGNOSIS IN A SCHOOL, THERE ARE TWO OR THREE ADULTS PROBABLY NONE OF WHICH, NONE OF WHOM HAVE A DIAGNOSIS AT ALL, AND YET THAT'S THE POPULATION THAT REALLY NEEDS THE HELP. BECAUSE WHEN PEOPLE GET OUT OF SCHOOL, WHAT HAPPENS? THEY GO OUT INTO THE ADULT WORLD AND ACCORDING TO THAT BRUGA STUDY, THE PEOPLE THAT THEY FOUND WITH AUTISM, THEY FILLED THE BOTTOM CATEGORIES OF SOCIAL ATTAINMENT. WHATEVER YOU JUDGE TO BE A SIGNAL OF SOCIAL SUCCESS, THE PEOPLE WITH AUTISM WERE AT THE BOTTOM. MARRIED OR SINGLE, MOST LIKELY TO BE SINGLE. MARRIED OR DIVORCED? MOST LIKELY TO BE DIVORCED. OWN HOME OR RENT A HOME, MOST LIKELY TO RENT A HOME. LIVE IN STATE OWNED HOUSING OR LIVE INDEPENDENTLY, MOST LIKELY TO BE LIVING WITH THE STATE, EMPLOYED OR UNEMPLOYED, MOST LIKELY TO BE UNEMPLOYED. THE PICTURE OF SUCCESS PAINTED BY THAT STUDY IS BLEAK. BUT AT THE SAME TIME, I CONSIDER THAT ALL THOSE PEOPLE GREW UP LIKE ME, UNDIAGNOSED WITH NO AIDS, WITH NO SERVICES, AND I SEE THE TREMENDOUS PROGRESS PLACES LIKE IVYMOUNT ARE MAKING WITH YOUNG PEOPLE, AND I THINK THAT'S THE CHALLENGE FOR US. WE NEED TO TAKE THE KINDS OF TOOLS AND TECHNIQUES THAT ARE DEVELOPED AT PLACES LIKE IVYMOUNT, AND THAT'S, OF COURSE, DEVELOPED WITH FUNDING FROM HERE. WE NEED TO TAKE THAT STUFF AND WE NEED TO TRANSLATE IT OVER THE WHOLE LIFE CYCLE SO THAT WHEN WE DEVELOP A THERAPY, WE HAVE A THERAPY THAT BENEFITS CHILDREN AND IT BENEFITS ADULTS, AND WE NEED TO DEVELOP A WIDE RANGE OF THERAPIES, WE NEED TO HELP PEOPLE WITH ALL PROBLEMS, WE NEED TO ADDRESS PEOPLE WHO NEED TO LEARN TO TALK AND WE NEED TO ADDRESS PEOPLE WHO NEED TO LEARN TO PASS A COLLEGE INTERVIEW EXAM. BECAUSE THOSE ARE BOTH EQUALLY VALID AND LEGITIMATE NEEDS. AND I WOULD SAY TO YOU THAT WE HAVE OUR WORK CUT OUT FOR US, AND I THINK IT IS TIME FOR US TO REALLOCATE THE WAY WE ARE SPENDING MONEY IN THE PUBLIC SECTOR FOR AUTISM. I THINK IT IS TIME FOR US TO SHIFT A SIGNIFICANT AMOUNT OF OUR RESOURCES TOWARDS DEVELOPING THERAPIES WITH A MUCH SHORTER TRANSLATION HORIZON AND THERAPIES THAT ADDRESS THE BROAD RANGE OF PROBLEMS WE REALLY LIVE WITH EVERY DAY. AND I THINK THAT WE SHOULD TAKE THE MONEY TO PAY FOR THAT FROM SOME OF THE BASIC SCIENCE STUDIES. NOT BECAUSE I THINK BASIC SCIENCE ISN'T IMPORTANT. I DO. I BELIEVE IN IT. BUT BECAUSE I RECOGNIZE THAT THERE ARE MILLIONS OF PEOPLE LIVING WITH AUTISM RIGHT NOW THAT NEED HELP IN THAT BASIC SCIENCE ISN'T GOING TO DO ANYTHING FOR US. WE ABSOLUTELY -- WE NEED TO MOVE IN THAT DIRECTION. AND THE OTHER THING THAT DR. INSEL AND I HAVE TALKED ABOUT, AND HE BELIEVES THAT THERE'S A SOLUTION COMING ON THE HORIZON FOR THIS, WE NEED TO BE FUNDING MORE STUDIES TO VALIDATE THE WORK THAT WE HAVE ALREADY DONE SO OFTEN HERE AT NIH AND CDC, AND I'VE SEEN THIS REVIEWING RESEARCH GRANTS. WE FUND NEW AND NOVEL RESEARCH. EVERYONE WANTS TO COME TO US AND PROPOSE A BRAND NEW THERAPY FOR TEACHING A CERTAIN SKILL TO CHILDREN OR TEACHING A CERTAIN SKILL TO ADULTS. AND IT'S NEW AND IT'S NOVEL AND THEY'RE GOING TO TAKE OUR TWO, THREE, $500 BILLION, THEY'RE GOING TO TRY IT OUT. AND WE FUND ONE OF THOSE THINGS AFTER ANOTHER. MANY OF THE THINGS THAT WE HAVE FUNDED IN THE LAST SIX OR SEVEN YEARS HAVE COME BACK WITH GOOD RESULTS. HOW MANY OF THEM ARE WIDELY AVAILABLE TO PEOPLE IN THE COMMUNITY? ALMOST NONE. THE REASON FOR THAT IS THAT WHEN WE FUND THOSE STUDIES, WE DON'T REALLY GO TO THE SECOND STEP. THE SECOND STEP WOULD BE FOR SOMEONE HERE, AND I BELIEVE IT SHOULD BE AT NIH, FOR SOMEONE TO REVIEW THE WORK THAT'S DONE, EVALUATE WHICH ARE THE MOST PROMISING STUDIES, AND THEN FUND MORE STUDIES TO VALIDATE THAT WORK AND DETERMINE WHO IT'S GOING TO SERVE AND HOW. WHAT WE NEED IN THE AUTISM WORLD, WE NEED THE EQUIVALENT OF A PHYSICIAN'S DESK REFERENCE FOR AUTISM THERAPY. WE NEED TO BE ABLE TO OPEN UP A REFERENCE BOOK AND SAY THAT THIS KID THAT I'M SEEING TODAY WHO'S 16 YEARS OLD THAT HAS TERRIBLE ANXIETY AND HE HAS TERRIBLE ORGANIZATIONAL PROBLEMS, THIS KID IS GOING TO BENEFIT FROM THIS THERAPY AND THIS THERAPY AND THIS THERAPY. AND THIS KID WHO HAS A SIGNIFICANT LANGUAGE CHALLENGE AND ALSO CAN'T SLEEP AT NIGHT, HE'S GOING TO BENEFIT FROM THIS THERAPY AND THIS THERAPY. WE NEED TO HAVE A RANGE OF THINGS THAT WE CAN PRESCRIBE JUST LIKE MEDICINE, AND SOME OF THOSE THINGS MAY BE MEDICINE, SOME OF THEM MAY BE TALK THERAPY, SOME MAY BE A COMBINATION, AND SOME MAY BE BRAND NEW THERAPIES LIKE TMS. WE NEED A WHOLE RANGE OF TOOLS IN THAT KIT, AND THAT KIT NEEDS TO BE DEEP ENOUGH AND BROAD ENOUGH TO COVER THE HUGE DIVERSE RANGE OF NEEDS IN THE AUTISM COMMUNITY. I BELIEVE THAT THE DEVELOPMENT OF THAT REFERENCE, IF YOU WILL, THAT KIT, SHOULD BE A PRIME MISSION OF THE NIH. I THEN THINK THAT IN THE PRIVATE SECTOR, WE NEED TO AUGMENT THAT WITH ADVOCACY GROUPS WHO GO OUT AND LOBBY AND FIGHT THE BATTLE FROM STATE TO STATE TO GET THIS STUFF UNDER THE SCOPE OF INSURANCE COVERAGE. I'VE SAID THIS AT THE IACC AND WITH YOU FOLKS HERE, I'M GOING TO SEIZE THE CHANCE TO SAY IT ALL TO YOU. WE HAVE DEVELOPED SOME WONDERFUL, WONDERFUL THINGS AT NIH. AND WHEN YOU DEVELOP THINGS THAT RESULT IN A PILL OR WHEN YOU DEVELOP THINGS THAT RESULT IN AN OPERATION, THEY GET OUT THERE IN THE FIELD AND THEY CHANGE THE WORLD. BUT WHEN WE DEVELOP THINGS THAT ARE THERAPIES THAT CAME OUT OF SOME LAB AT BAYLOR OR UCLA OR SOME OTHER COLLEGE, ALL TOO OFTEN, THEY DON'T GO ANYWHERE BECAUSE WE DON'T SUCCESSFULLY SPREAD THEM IN THE COMMUNITY. WE DON'T VALIDATE WHAT WORKS WHERE, WE DON'T TRAIN CLINICIANS TO DO THE TEACHING, AND WE DON'T BACK THAT UP BY GETTING INSURANCE COMPANIES TO COVER IT. IT IS JUST SUCH A VITALLY IMPORTANT THING. THIS IS VERY UNSETTLING, YOU KNOW? I SHOULDN'T HAVE WRITTEN THIS THING. I SHOULD HAVE -- I SHOULD HAVE JUST GOTTEN UP HERE AND TALKED TO YOU FOLKS. SO I'VE GOT TO LOOK AT THE OTHER POINTS I WANTED TO MAKE TO YOU. ANOTHER THING THAT I'M VERY CONCERNED ABOUT, AND I WOULD JUST -- I'D SAY IT TO YOU IN THE CONTEXT OF PROJECT SEARCH IS THE PUBLIC IMPRESSION OF PEOPLE WITH AUTISM AND PEOPLE WITH DISABILITIES IN GENERAL. ONE OF THE THINGS THAT I BELIEVE HOLDS US BACK IN GETTING FUNDING FOR AUTISM SERVICES, ONE THING THAT HOLDS US BACK FROM GETTING ALL SORTS OF ASSISTANCE IS A WIDESPREAD PUBLIC BELIEF THAT EITHER PEOPLE WITH AUTISM DON'T NEED ANY HELP OR A BELIEF THAT PEOPLE WITH AUTISM ARE DANGEROUS UNDESERVING FREAKS WHO JUST GOT WHAT WE DESERVED AND WE DESERVED NOTHING. I THINK THAT COMES ABOUT TO A LARGE EXTENT THROUGH MEDIA PORTRAYALS OF PEOPLE WITH DISABILITIES. WHEN I WALKED AROUND AND LOOKED AT THE YOUNG ADULTS IN PROJECT SEARCH, I DON'T KNOW HOW MANY OF YOU FOLKS HAVE SEEN THEM WALKING AROUND THE CLINICAL CENTER HERE, BUT THEY'RE WONDERFUL TO SEE AND THEY'RE HAPPY AND THEY'RE PROUD AND THEY'RE DOING REAL IMPORTANT JOBS AND THEY'RE REALLY INTO IT. IT'S A GREAT THING. AND THEY'RE OUT THERE AND THE PUBLIC IS SEEING THEM. BUT YOU KNOW, I TALK ABOUT WHAT CHALLENGES THEY RUN INTO AND ONE OF THE BIGGEST CHALLENGES IS PUBLIC ACCEPTANCE. THEY GET INTO AN ARGUMENT WITH SOMEBODY IN A CORRIDOR, AND WHAT HAPPENS, THE AUTISTIC GUY IS IN TROUBLE BECAUSE THAT PERSON IS SCARED OF HIM. HE'S SCARED WE'RE GOING TO ATTACK HIM. WHAT WENT WRONG WHEN WE IN AMERICA BECAME AFRAID THAT A GUY WHO HAS LANGUAGE CHALLENGES OR A GUY WHO'S GOT COORDINATION TROUBLES AND STANDS CROOKED AND CAN'T TALK QUITE RIGHT, WHAT MAKES US THINK THOSE PEOPLE ARE MONSTERS AND THEY'RE GOING TO ATTACK US. WHEN I WAS GROWING UP, I DIDN'T FEEL THAT WAY. SOMETHING THAT WE DO IN POPULAR CULTURE, WE MAKE MOVIES ABOUT PEOPLE THAT GO AROUND YOU CUTTING PEOPLE UP WITH CHAIN SAWS, AND SOMEHOW IT SUBTLELY TWISTS IMAGE OF PEOPLE. I LOOK AT HOW THE MEDIA PORTRAYS PEOPLE WITH AUTISM AND IT WAS REALLY BROUGHT HOME TO ME WITH THAT BUSINESS IN NEWTOWN THERE WITH THE KID GOING OUT AND SHOOTING PEOPLE. THE DAY THAT THAT HAPPENED, NEWS REPORTERS STARTED SAYING WE CAN'T HAVE ASPERGER'S. AND THAT WAS THE HEADLINE. THIS KID WITH ASPERGER'S GOES OUT AND KILLS A BUNCH OF PEOPLE. NOW YOU JUST IMAGINE, MOST OF YOU WHO ARE FAMILIAR WITH ASPERGER'S, YOU KNOW THAT THERE IS NO DOCUMENTED CONNECTION BETWEEN PEOPLE HAVING ASPERGER'S AND GOING OUT AND COMMITTING MASS MURDER. THERE'S NOT EVEN ANY LEGITIMATE SUGGESTION OF THAT IN THE MEDICAL COMMUNITY. THERE IS NO MORE SUGGESTION THAT PEOPLE WITH ASPERGER'S WOULD DO THAT THAN THERE IS JEWISH PEOPLE OR BLACK PEOPLE WOULD GO OUT AND COMMIT MURDERS OR ROB LIQUOR STORES. AND YET EVERY ONE OF YOU, I THINK, WOULD AGREE WITH ME THAT IF "THE WASHINGTON POST" PUBLISHED A HEADLINE SAYING THAT A BLACK GUY ROBBED THE LIQUOR STORE AND THAT'S WHAT THEY DO, HE'D LOSE HIS JOB. HE WOULDN'T EVEN COME BACK TO WORK AFTER THAT WAS PUBLISHED. AND YET PEOPLE CAN SAY AUTISTIC PEOPLE DO THAT. AND THEY CAN SAY THAT WITH IMPUNITY AND THE PUBLIC JUST NODS THEIR HEAD. AND YOU KNOW WHAT HAPPENED, BACK IN THE 1920s, 30s, 40s, 50s AND 60s, NEWSPAPERS DID PUBLISH THAT KIND OF STUFF ABOUT BLACK PEOPLE, ABOUT JEWISH PEOPLE, ABOUT GAY PEOPLE, ABOUT ALL SORTS OF RECOGNIZED MINORITIES. AND THOSE MINORITY GROUPS ROSE UP AND THEY FOUGHT BACK. WE RESPONDED WITH FEDERAL LEGISLATION, WE RESPONDED BY CHANGING WHAT'S ACCEPTABLE IN THE MEDIA AND WHAT WE'LL LISTEN TO. AND THAT KIND OF STUFF HAS DISAPPEARED. BUT IT HASN'T DISAPPEARED FOR PEOPLE WITH AUTISM. YOU MIGHT SAY WHAT'S THE HARM WHEN WE SAY THE GUY WHO SHOT HIM HAD ASPERGER'S? THE HARM IS THAT EVERY TIME SOMETHING LIKE THAT IS PUBLISHED IN THE MEDIA, PEOPLE ASSOCIATE ASPERGER'S AND AUTISM WITH MURDER AND THEY THINK IN THE BACK OF THEIR MIND, I DON'T KNOW IF IT'S VERY SMART TO HAVE THAT AUTISTIC KID IN MY SON'S CLASS. MAYBE I SHOULD TALK TO MY TEACHER. MAYBE I SHOULD MOVE MY KID. AND WHEN SOMEBODY COMES IN AND APPLIES FOR WORK, I DON'T KNOW IF WE SHOULD HAVE THAT PERSON WITH AUTISM WORKING IN OUR STOCK ROOM ANYMORE. I THINK WE SHOULD JUST GET RID OF HIM. YOU KNOW, IT'S A JUSTIFICATION FOR MARGINALIZATION AND DISCRIMINATION. AND I WOULD HOPE AS A LEADER IN PUBLIC HEALTH FOR THE UNITED STATES THAT THE NATIONAL INSTITUTES OF HEALTH SHOULD BEGIN TO SPEAK OUT AGAINST THAT. BECAUSE I BELIEVE THAT IN THE CASE OF OTHER KINDS OF DISCRIMINATION, WE HAD POWERFUL ADVOCACY GROUPS, WE HAD THE JUSTICE DEPARTMENT, WE HAD OTHER BRANCHES OF THE FEDERAL GOVERNMENT TO FIGHT THAT BATTLE. WHEN IT COMES TO DISCRIMINATION AGAINST AUTISTIC PEOPLE, I THINK THAT'S A BATTLE THAT THE NIH SHOULD TAKE A LEADING ROLE IN FIGHTING. AND I VERY MUCH HOPE TO SEE THAT THAT. YOU KNOW, I SAY IN HERE IN MY NOTES THAT I WAS MARGINALIZED IN THE SAME WAY, AND I TOLD YOU ABOUT THAT WHEN I WAS GROWING UP, AND I GUESS I WONDER WHAT THE EFFECT WOULD BE IF I HADN'T HAVE BEEN MARGINALIZED, WHAT IF I HADN'T GONE TO A SCHOOL LIKE IVYMOUNT, AND WHAT IF THEY HAD FOUND A COLLEGE I COULD GO TO AND THEY HAD PLACED ME IN AN ASPERGER-FRIENDLY COLLEGE AND THEY HAD BEEN THERE TO COUNSEL ME AS A FRESHMAN WHEN I WAS SCARED AND WANTED TO CALL MY ADVISORS. THEN WHEN I WENT ON TO GRADUATE SCHOOL, WHERE WOULD I BE TODAY? PERHAPS I'D BE A DIRECTOR HERE TOO. AND YOU KNOW, I WONDER, WOULD ACCEPTANCE HAVE DONE THAT? OR WOULD I BE LIKE THAT KID IN THE JOHNNY CASH SONG, THAT BOY NAMED SUE, YOU KNOW? MAYBE I JUST WENT OUT, WHOOPED THEIR ASSES BECAUSE THEY TOLD ME I WAS A LOSER. I DON'T KNOW WHICH IT IS. BUT I SURELY KNOW THE STING OF BEING REJECTED, MARGINALIZED, DISCRIMINATED AGAINST HAS STAYED WITH ME ALL MY LIFE. AND AS POWERFUL AND ARTICULATE AS A SPEAKER AS YOU MIGHT BELIEVE ME TO BE NOW, I HAVE BEEN HELD BACK ALL ALONG BY THAT, AND I FEEL SO STRONGLY FOR THOSE PEOPLE WHO ARE LESS ABLE TO SPEAK THAN ME AND I THINK THAT ALL OF US HAVE A DUTY TO HELP THAT COMMUNITY, TO HELP OUR BROTHERS AND SISTERS ON THE SPECTRUM HAVE BETTER LIVES AND BE THE BEST WE CAN BE. I SURE AM SORRY THAT I HAVE GIVEN YOU THIS RAMBLING ACCOUNT, YOU KNOW, IT'S SUCH A PRESTIGIOUS INVITATION FOR ME TO COME DOWN AND TALK TO YOU HERE, AND I FEEL LIKE I'VE SORT OF FOUNDERED, YOU KNOW, AND GIVEN YOU A WELL THOUGHT THROUGH ADDRESS BUT THERE IT IS. SO I GUESS WITH THAT, AND I'VE GIVEN YOU, I THINK, MY CHARGES FOR WHAT I THINK WE SHOULD DO, I'M HAPPY TO ASK FOR QUESTIONS AND SEE IF WE MIGHT TAKE A FEW QUESTIONS BEFORE WE END. SO THANK YOU SO MUCH FOR HAVING ME. [APPLAUSE] THERE'S A MICROPHONE HERE AND HERE IF PEOPLE WANT TO ASK QUESTIONS. >> MY NAME IS RICK BERZON. I JUST WANT TO SAY YOU DIDN'T FOUNDER AT ALL, YOU GAVE A WONDERFUL TALK, IT WAS VERY INSPIRING AND IT RESONATED WITH ME IN PARTICULAR BECAUSE I HAVE A SON WITH ASPERGER'S WHO MY WIFE AND I ARE BOTH CLINICIANS SO WE REALIZED FAIRLY EARLY ON THAT THERE WERE SOME ISSUES WITH MY SON AND WE WERE ABLE TO HAVE HIM AFTER A FEW FAILURES CORRECTLY DIAGNOSED AND EVEN THOUGH NO ONE KNEW EXACTLY WHAT TO DO WITH THE DIAGNOSIS, WE WERE ABLE TO STAY WITH IT OVER THE YEARS AND HAVE HELPED HIM, AND HE'S AT A SMALL LIBERAL ARTS COLLEGE IN NORTH CAROLINA NOW, AND DOING VERY WELL. AND HE IS IN INFORMATION TECHNOLOGY AND COMPUTERS, WHICH I THINK IS WHERE A LOT OF PEOPLE TODAY WHO ARE LOOKING FOR WORK GO BECAUSE THAT SORT OF ENVIRONMENT WORKS FOR THEM AND WHAT THEY'RE DOING. BUT THE QUESTION I HAD FOR YOU WAS REALLY YOUR HISTORY IS VERY SIMILAR, I THINK, TO THOSE OF US THAT KNOW CHILDREN WITH ASPERGER'S, WHICH IS A FAIRLY HIGH FUNCTIONING FORM OF AUTISM, AND IT'S VERY IDIOSYNCRATIC, AS YOU DESCRIBED IT. BUT FOR YOU, YOU TRIED A NUMBER OF DIFFERENT ACTIVITIES WITH YOUR LIFE, AND EVEN THOUGH YOU THOUGHT YOU WERE A FAILURE, YOU WERE ACTUALLY VERY SUCCESSFUL, AND BUT FOR WHATEVER REASON, YOU MISUNDERSTOOD THOSE SIGNALS, AND WENT TO DO SOMETHING ELSE. BUT FOR PEOPLE WITH THIS CONDITION, WHAT IS IT THAT CAUSED YOU TO AT SOME POINT REALIZE THAT YOU HAD MISREAD THE SIGNALS AND CHOOSE SOMETHING THAT YOU'RE OBVIOUSLY VERY GOOD AT, YOU'RE OBVIOUSLY VERY GOOD AT A NUMBER OF THINGS. BUT WHAT WAS IT, WAS IT THE MATURITY, WAS IT THE KRON LOGIC AGING, WAS IT THE FACT THAT YOU TRIED SOME THINGS AND AFTER A WHILE, IT JUST SORT OF DAWNED ON YOU THAT YOU HAD MISREAD THE SIGNALS AND SO THAT YOU ARE A ABLE TO PROGRESS WITH YOUR LIFE, WHAT DO YOU THINK IT WAS WITH THE EXPERIENCES THAT YOU HAD WHICH LED YOU TO DEVELOP THE SELF CONFIDENCE AFTER HAVING HAD THE SORT OF CHILDHOOD THAT YOU HAD, YOU'RE ABLE TO OVERCOME THAT AND TO MOVE ON WITH YOUR LIFE AND TO BE VERY SUCCESSFUL IN A NUMBER OF DIFFERENT FIELDS. HOW DO YOU THINK THAT TRANSPIRED? >> I THINK THAT A NUMBER OF PEOPLE GAVE ME LITTLE TIDBITS OF ADVICE THAT MAY NOT HAVE REALLY MEANT EVERYTHING TO THEM AT THE TIME, BUT THEY MEANT THE WORLD TO ME. I THINK THAT ONE OF THE FIRST PEOPLE WHO DID THAT IN THE MEDICAL FIELD WAS DR. PASCALEON OF HARVARD MEDICAL SCHOOL. HE CONTACTED ME SHORTLY AFTER MY BOOK "LOOK ME IN THE EYE" WAS PUBLISHED, AND I WENT AND I MET HIM FOR DINNER. AT A RESTAURANT IN BOSTON. AND WE SAT AND WE TALKED ABOUT WHAT HE WAS DOING, AND I ASKED WHY HE WAS INTERESTED IN ME, AND HE TOLD ME HE WAS INTERESTED IN PEOPLE WITH I SAVANT ABILITIES, AND I SAID, WELL, I DIDN'T THINK I DESCRIBED ANYTHING LIKE THAT, YOU KNOW, IN MY BOOK, BUT DANIEL TAMMAN HAD WRITTEN A BOOK ABOUT RECITING PI TO 21,000 PLACES. THAT CAME OUT ABOUT THE SAME TIME AS "LOOK ME IN THE EYE." HE SAID ACTUALLY WHAT I WAS TALKING ABOUT WAS YOUR STORY IN LOOK ME IN THE EYE ABOUT HOW YOU BECAME A DIGITAL ENGINEER IN TWO WEEKS. AND IN THAT, I HAD BEEN WORKING AS A SELF TAUGHT ENGINEER IN ROCK AND ROLL, AND ROCK AND ROLL ENGINEERING BACK IN THE 70s WAS ENTIRELY ANALOG. ANALOG TAPE RECORDING, ANALOG SIGNAL PROCESSING AND ALL. WHEN I LOOKED AT THE JOB AT MILTON BRADLEY, THAT WAS THE DAWN OF MICROPROCESSORS AND EVERYTHING BEING DONE THERE WAS DIGITAL. SO THEY WANTED A DIGITAL ENGINEER TO CREATE SOUND EFFECTS. AND I LOOKED AT THE JOB AD AND I THOUGHT, HOW HARD CAN THAT BE? I'LL BE A VISUAL ENGINEER. SO I WENT TO THE LIBRARY AT THE UNIVERSITY OF MASSACHUSETTS AND I GOT ME SOME TEXTBOOKS ON DINL TALL DESIGDIGITAL DESIGN, YOU STU STUDIED THEM FOR A COUPLE WEEKS, WENT DOWN THERE AND SAID I WAS A DIGITAL ENGINEER AND THAT WAS THAT. SO ALL THESE YEARS I HAD THOUGHT WITH WHAT PEOPLE SAID TO ME, THE PEOPLE THAT KNEW ME SAID, WELL, YOU JUST TRICKED YOUR WAY INTO A JOB. YOU JUST LIED TO THEM AND THEY HIRED YOU. THAT'S THE ONLY REASON YOU EVER GOT THAT JOB. AND I BELIEVED THAT. AND THAT'S ONE OF THE REASONS THAT I QUIT MILTON BRADLEY. BECAUSE I KNEW I WAS JUST A FRAUD WHO WAS JUST GOING TO GET FIRED WHEN THEY FOUND OUT THE TRUTH ABOUT ME. AND YOU KNOW WHAT ALVERO SAID TO ME? HE SAID, WELL, I DON'T THINK YOU INTERPRETED THAT CORRECTLY. HE SAID I THINK THAT'S A PERFECT EXAMPLE OF A SAVANT BEHAVIOR. HE SAID WHEN I READ YOUR BOOK, I SAW THAT YOU DESCRIBED A LIFETIME OF SUCCESSES AND IF YOUR LIFE WAS FOUNDED ON FRANKLY BULLSHIT AND TRICKERY, YOU WOULD HAVE FAILED ONE TIME AFTER THE OTHER IF SOMEBODY LIED AND TRICKED HIS WAY INTO A JOB AT A MAJOR COMPANY PRODUCING PRODUCTS ONE AFTER THE OTHER, HOW COULD YOU HAVE SUCCEEDED? BUT YOU DID SUCCEED. AND HE SAID TO ME THAT'S A PERFECT EXAMPLE OF A SAVANT BEHAVIOR, JUST LIKE TAN YELL LEARNED ENOUGH ICELANDIC TO HAVE A CONVERSATION IN TWO WEEKS, YOU LEARNED ENOUGH ENGINEERING TO STEP INTO A SENIOR ENGINEERING ROLE IN THAT COMPANY AND DO THE JOB, AND NOT ONLY DO THE JOB, DO THE JOB IN A WAY THAT THEY DESCRIBED AS EXCEPTIONAL. AND DAND I DID THAT AT A NUMBER OF DIFFERENT BUSINESSES. UNTIL HE SAID THAT TO ME, I GUESS I ALWAYS JUST ASSUMED THAT IT WAS JUST GOOD LUCK THAT HAD CARRIED ME IN LIFE, AND IT WASN'T ANY KIND OF UNUSUAL REASONING POWER. YOU KNOW I WILL ALWAYS BE GRATEFUL FOR HIM SAYING THAT, LIKE IT WAS NO BIG DEAL TO HIM THAT I COULD DO THAT. AND THEN AFTER I GOT -- AFTER I WROTE THAT BOOK, PEES PEOPLE IN GOVERNMENT AND PRIVATE AGENCIES ASKED ME IF I WOULD GET INVOLVED IN REVIEWING RESEARCH GRANTS AND TALKING ABOUT RESEARCH AND TALKING ABOUT POLICIES, AND YOU KNOW, I THINK THERE, TWO OF THE PEOPLE HERE AT NIH WERE VERY INSTRUMENTAL IN THAT. I THINK BOTH TOM INSEL HERE AND ALLEN GUTTMACHER BOTH PLAYED KEY ROLES, I THINK, IN INFLUENCING ME BECAUSE BOTH OF THEM AT DIFFERENT TIMES, WE SORT OF -- SORT OF TOOK ME ASIDE AND ENCOURAGED ME, I THOUGHT THAT I WAS NOTHING BUT THE TOKEN AUTISTIC PERSON ON THESE COMMITTEES. I THOUGHT, WELL, THEY HAVE TO HAVE AN AUTISTIC GUY ON THE COMMITTEE SO THEY'LL GET ME AND IT KIND OF DOESN'T MATTER WHAT I SAY. AND INDEED, CRITICS IN THE AUTISM COMMUNITY SAID WHY ARE YOU EVEN BOTHERING BEING ON THESE COMMITTEES FOR THE GOVERNMENT? THERE'S 35 SCIENTISTS AND THEN THERE'S YOU, ALL THOSE PEOPLE, ALL THEIR VOTES MATTER, YOU'RE JUST ONE GUY. IT DOESN'T MATTER WHAT YOU SAY. AND I SAID THAT TO BOTH OF THEM. AND THEY EXPLAINED TO ME THAT I WAS WRONG. AND IN FACT, BOTH OF THEM SAID AT DIFFERENT TIMES, WOULD YOU THINK ABOUT GETTING MORE INVOLVED IN THIS? AND ULTIMATELY THAT'S WHAT LED TO ME BEING ON THE IACC. IT WAS THEIR ENCOURAGEMENT OF ME. AND TODAY, YOU KNOW, I'VE BEEN DOING THIS NOW WITH THE GOVERNMENT FOR GOING ON FIVE YEARS, AND NOW I REALIZE THAT I DO HAVE THE 'FESS SAIR EE INTELLECT, IF YOU WILL, TO SIT THERE AND OFFER MY THOUGHTS AND I REALIZE THAT PEOPLE DO HAVE A REGARD FOR ME. BUT I COULD NEVER HAVE KNOWN IT, AND IF IT WASN'T FOR THEM SAYING THAT TO ME, I WOULD NEVER BE HERE TODAY, BECAUSE YOU KNOW, I WOULDN'T HAVE THE CONFIDENCE TO CONTINUE. I CAN'T LOOK OUT AT THE PEOPLE IN THE ROOM AND DISCERN THAT THEY REALLY LIKE ME. I HAVE TO DEDUCE IT BY LOGIC, AND IT'S ONLY BECAUSE THESE TWO GUYS WHO WERE, YOU KNOW, LEADERS IN POSITIONS THAT I RESPECT WHO CAN SORT OF TALK TO ME AND ENCOURAGE ME, AND IT'S MADE IT POSSIBLE. AND I GUESS I OWE YOU BOTH A THANK YOU FOR THAT, REALLY, AND I'D POINT THEM -- WELL, AT LEAST YOU'RE HERE. [LAUGHTER] >> AND THAT KIND OF THING, YOU KNOW, IT'S ALWAYS IN MY LIFE, SOMEONE WHO HAS BEEN THERE TO BE A MENTOR TO ME TO MAKE IT POSSIBLE BECAUSE I CAN'T TELL BY MYSELF WHEN I DO SOMETHING WELL. I HAVE TO LOOK TO SOMEBODY ELSE THAT I RESPECT WHO CAN ADVISE ME, AND I'VE BEEN SO LUCKY TO HAVE THAT IN MY LIFE. >> THANK YOU. >> HI, HOW ARE YOU? THANK YOU, YOU HAVE TRULY INSPIRED ME, AS EVERYONE IN THE ROOM, I'M SURE, WOULD ECHO. MY NAME IS SHARRY, I'M A MOM OF A YOUNG 16-YEAR-OLD BOY WITH AUTISM. ONE THING I DID TELL HIM IS YOU BELIEVE IN YOURSELF, DON'T EVER LET ANYONE TAKE THAT AWAY FROM YOU AND THAT YOU HAVE THE RIGHT TO DO ANYTHING AND BE WHEREVER YOU ARE AS LONG AS YOUR BEHAVIOR IS GOOD. BUT A QUESTION FOR YOU IS THIS: WE JUST RECENTLY FOUND OUT THAT WHEN THERE'S BACKGROUND NOISE, HE CAN'T HEAR WORDS. AN AUDIOLOGIST ABOUT TWO WEEKS AGO SAID THERE WAS JUST SOMETHING UNIQUE ABOUT HIM. HE'S SO INTELLIGENT, HE CAN READ, INTERPRET THINGS THROUGH THE COMPUTER, RESEARCH. HE DOESN'T HAVE AN INTERACTIVE VERBAL CONVERSATION BUT YET HE UNDERSTANDS COMPLEX CONVERSATIONS, BUT WITH BACKGROUND NOISE, HE DOESN'T REACT. WHEN THEY DID THE TESTS TWO WEEKS AGO, THEY FOUND OUT THAT ANY BACKGROUND NOISE THAT'S GOING ON NULLIFIES THE WORDS. HE JUST CAN'T DECIPHER BETWEEN THE TWO. I WAS WONDERING IF THAT EVER HAPPENED TO YOU AND IF SO, WHAT WERE YOU A ABLE TO DO TO OVERCOME THAT PROBLEM. >> IT DOES HAPPEN TO ME, AND I'M NOT SURE HOW I OVERCOME IT OR HOW I COULD TRAIN IT. ONE THING THAT'S VERY INTERESTING IS PEOPLE SOMETIMES COME UP TO ME AND THEY WOULD SAY, I DON'T UNDERSTAND HOW YOU COULD BE A REAL AUTISTIC PERSON BECAUSE MY SON CAN'T STAND NOISES AND YOU TALK ABOUT DOING THIS ROCK AND ROLL AND WORKING IN DISCOS AND REAL AUTISTIC PEOPLE CAN'T DO THAT. AND SEE, NOW THAT I'VE PARTICIPATED IN ALL OF THESE VIRGINIA BEACRESEARCHSTUDIES, I KNOW I'M A REAL AUTISTIC PERSON, BUT YOU KNOW, I CAN GO INTO -- I CAN GO INTO LIKE A BAR, YOU KNOW, OR A CROWDED RESTAURANT, AND IF I'M BY MYSELF AND I'M GOING TO, LIKE, MEET SOMEBODY, I CAN EASILY BE OVERWHELMED BY NOISE AND I WOULD END UP OUTSIDE. IN FACT, YOU KNOW, I WAS IN THE LOBBY OF THE HOSPITAL HERE TODAY, AND I WAS WAITING FOR STEWART FROM AUTISM SPEAKS TO COME IN AND TALK TO ME AT LUNCHTIME, AND MY WIFE WAS THERE WITH ME AND IT WAS -- AS YOU MIGHT IMAGINE, I SHOULD BE COMFORTABLE, RIGHT, IT'S NOT HORRIBLY LOUD IN THE LOBBY, BUT I FOUND IT SOOTHING TO GO OUTSIDE IN NATURE EVEN THEN AND GET AWAY FROM THAT, SO I CERTAINLY AM SUSCEPTIBLE TO THAT. BUT AT THE SAME TIME, I COULD PLAY ROCK AND ROLL AS LOUD AS WE EVER DID IT AND HOW CAN WE DO THOSE THINGS? I WROTE ABOUT THAT IN MY SECOND BOOK, "BE DIFFERENT." I TOOK EVERY WAY THAT AUTISM COULD AFFECT US, AND I WROTE A STORY TO SHOW HOW I EITHER MINIMIZED IT OR I USED IT TO MY ADVANTAGE OR HOW IT SHAPED MY LIFE. AND I ACTUALLY GOT A PARTIAL ANSWER TO WHAT YOU JUST ASKED ME, AT AN EVENT WITH DOUG FLUTIE, THE FOOTBALL PLAYER. HE HAS AN AUTISM FOUNDATION BACK IN NEW ENGLAND. I GO OUT THERE EVERY YEAR WHEN I CAN. AGAIN, I USED TO THINK I WAS LIKE A TOKEN AUTISTIC PERSON, BUT NOW I REALIZE THOSE PEOPLE SORT OF LIKE ME. PLUS I WATCHED SOME OF THOSE PATRIOTS LIKE DOGS BOWLING WITH THEM, SO I EARNED THEIR RESPECT. ANYWAY, I WAS THERE AND IT WAS LIKE REALLY NOISY. AND I WAS GOING TO LEAVE. AND IT WAS -- THE EVENT WAS LIKE A THIRD OVER. I GO UP TO THEM AND I SAY, HEY, DOUG, I'M SORRY, I'M GOING TO TAKE OFF, SO I'LL SEE YOU LATER. HE SAID DON'T TAKE OFF, HE SAID YOU'VE GOT TO STAY FOR THE AWARDS AND STUFF. I DON'T REMEMBER WHAT ELSE WAS GOING ON. HE SAID YOU'VE GOT TO STAY. HE SAID MY BAND IS GOING TO GO ON IN FIVE MINUTES, SO WHY DON'T YOU WAIT UNTIL MY BAND STARTS? BECAUSE HE'S A MUSICIAN. HE'S GOT GUYS THAT PLAY WITH HIM. AND SO I SAID OKAY, I'LL WAIT. AND I STAND THERE, AND I WAS GETTING MORE AND MORE NERVOUS AND I'M LIKE LOOKING DOWN, THERE'S A COUPLE HUNDRED PEOPLE AT THE BAR, AND I COULDN'T -- THERE'S NO WAY I COULD VENTURE DOWN THERE AMONG THEM. SO HE GETS HIS BAND MEMBERS TOGETHER, THEY GET UP AND THEY START PLAYING. AND I GO UP IT THERE AND I STAND BEHIND HIM, YOU KNOW, AND THE BAND IS LIKE RIGHT OUT THERE WHERE YOU ARE AND I'M STANDING BACK HERE, AND I WALK RIGHT UP AND I'M STANDING BEHIND EACH OF THE MUSICIANS, AND I'M JUST STANDING THERE LISTENING TO THE INSTRUMENTS AND I REALIZED THAT THE SOUND OF THE CROWD AND EVERYTHING HAD DROPPED AWAY, AND I WAS DOING THE SAME THING I DID PRODUCING MUSIC IN 1977, YOU KNOW? I WAS STANDING THERE, AND I WAS JUST LISTENING TO THE BASS, I WAS LISTENING TO THE LEAD GUITAR, THE RHYTHM GUITAR, TO THE DRUMS, AND ALL OF A SUDDEN, THERE WERE NO OTHER NOISES. AND THAT IS MY AUTISTIC POWER OF CONCENTRATION IN USE. SOMEHOW, I SWITCHED OFF THAT WHICH WAS DISTRACTING ME AND I LOCKED IN ON THAT. TODAY, WHEN YOU LOOK AT WHAT I DO, FOR EXAMPLE, IF YOU LOOK AT MY PHOTOGRAPHY ON FACEBOOK, IT'S JOHN ELDER ROBISON ON FACEBOOK, I HAVE LOTS OF PHOTOS OF PERFORMERS AND MUSICIANS. SOMETIMES PEOPLE SAY, HOW COULD YOU GET UP THERE ON A STAGE AND PHOTOGRAPH THOSE MUSICIANS WITH ALL THAT NOISE AND ALL THAT STUFF GOING AROUND, BEING AUTISTIC? AND THE ANSWER IS, I DON'T EVEN SEE IT. I GO UP THERE ON THE STAGE, I GOT MY CAMERA AND I'M LIKE LOCKED IN ON THAT GUY PLAYING GUITAR, AND IT BECOMES LIKE A DANCE OF HIM AND ME. HE KNOWS I'M THERE AND I KNOW HE'S HERE AND I'M WATCHING HIM, AND I JUST WAIT FOR THE SHOTS TO COME TO ME. AND YOU KNOW, THAT'S HOW I DO IT. WHEN THAT HAPPENS, I DON'T HEAR ANYTHING. WHEN I'M LOCKED INTO SOMETHING, I DON'T MISS IT. TODAY BECAUSE OF DOING ROCK AND ROLL SO LONG, NOW I'M LIKE THREE QUARTERS DEAF. SO NOW MY WIFE IS SAYING SOMETHING TO ME, I DON'T HEAR IT BECAUSE I'M ACTUALLY SORT OF DEAF, BUT OUT SIGH OF BEING DEAFENEND BY ROCK AND ROLL, I ACTUALLY SORT OF LEARNED TO SOLVE THE PROBLEM YOU'RE TALKING ABOUT TO ME BY THE POWER OF FOCUS OF MY MIND. I DESCRIBE WHAT I DID IN "BE DIFFERENT." NOW WHETHER YOUR SON CAN TRANSLATE THAT IN HIS OWN LIFE TO SOMETHING BENEFICIAL, I DON'T KNOW. BUT I WOULD HOPE THAT IF YOU READ THOSE STORIES IN THAT BOOK, THAT YOU MIGHT GAIN SOME VALUE. AND THE OTHER THING I WOULD SAY TO YOU IS THAT LAST YEAR, AUTISM SPEAKS, AND I THINK NIH TOGETHER, FUNDED SOME TESTS OF A NEW DRUG IN MICE THAT HAVE TRAITS OF AUTISM BRED INTO THEM GENETICALLY, AND THEY ACTUALLY FOUND THIS DRUG THERAPY TO BE POWERFULLY EFFECTIVE IN REMEDIATING SENSORY OVERLOAD, AND WE ARE NOW LOOKING AT TESTING THAT IN HUMANS, AND WHAT THAT SUGGESTS IS THAT SOMETIME IN THE NEXT DECADE, WE MAY ACTUALLY HAVE A DRUG THERAPY FOR SENSORY OVERLOAD IN AUTISTIC PEOPLE, BUT THERE IS STILL WHAT I WRITE ABOUT, WHICH IS THE POWER OF USING YOUR MIND TO FIX YOURSELF, SO WE HAVE BOTH THOSE ANSWERS, I HOPE, FOR YOU. DO WE HAVE TIME FOR ANY MORE? >> I JUST HAVE TO TELL YOU ONE OTHER THING, SIR. YOU SAID YOU WISHED THERE WAS A WAY TO HAVE ALL THESE THERAPIES COME TOGETHER. MYSELF AND COMCAST HAVE BEEN WORKING ON A TV SHOW WE'RE GOING TO PUT ON WEB TV THAT TALKS ABOUT ALL THE THERAPIES WE COULD POSSIBLY ACCUMULATE, SO MAYBE YOUR WISH WILL BE TRUE WITHIN A YEAR. SO THANK YOU. >> I KNOW THAT DR. INSEL HERE, HE WANTS TO SEE IT COME TRUE TOO, AND I KNOW WE HAVE ADVOCATES FOR THAT AND I VERY MUCH HOPE SO. ARE WE OUT OF TIME? >> I THINK WE ARE, BUT JOHN, JUST WHIC BY WAY OF SUMMARY BECAUSE YOU'VE SAID A COUPLE TIMES THAT YOU'VE WONDERED HOW THE AUDIENCE WAS HEARING YOUR MESSAGES. WITHOUT YOUR NOTES, WHICH WE UNDERSTAND YOU HAD PREPARED SO -- >> YES, RIGHT HERE. YEP. RIGHT HERE. >> I'D LOVE TO JUST TAKE A MOMENT TO APPLAUD WHAT YOU'VE DONE AND TO SAY HOW FOR ALL OF US, THIS HAS BEEN BOTH INSPIRING, INFORMATIVE. THANK YOU. >> WELL THANKS SO MUCH. IT HAS REALLY MEANT THE WORLD FOR ME TO BE WELCOMED BY YOU GUYS AND TO JOIN YOU DOWN HERE. THANK YOU SO MUCH.