♪ ♪ ♪ ♪ GOOD EVENING AND WELCOME TO UNDERSTANDING AUTISM, A KET FORUM.

I'M YOUR HOST KELSEY STARKS.

TONIGHT, WE DIVE INTO THE WIDE RANGING SPECTRUM OF AUTISM.

WE'LL DISCUSS DIAGNOSIS, THE IMPORTANCE OF EARLY INTERVENTION, EDUCATION OPPORTUNITIES, NOT ONLY FOR THOSE LIVING WITH AUTISM BUT HOW WE CAN ALSO BE EDUCATED TO UNDERSTAND MORE ABOUT THE CONDITION.

WE WILL ALSO TALK ABOUT RESOURCES FOR PARENTS AND CAREGIVERS AND HOW TO NAVIGATE THE COMPLICATED SYSTEM SURROUNDING THESE RESOURCES.

MORE CHILDREN THAN EVER BEFORE ARE BEING DIAGNOSED WITH AUTISM.

THE CDC NOW ESTIMATES ABOUT ONE IN EVERY 36 CHILDREN ARE DIAGNOSES WITH AUTISM SPECTRUM DISORDER.

THAT'S A NUMBER THAT HAS BEEN STEADILY INCREASING OVER THE LAST 20 YEARS.

IN FACT, 20 YEARS AGO, ONE IN EVERY 150 CHILDREN WERE DIAGNOSED.

MUCH OF THAT, OF COURSE HAS TO DO WITH INCREASED AWARENESS AND SCREENING.

THE CDC DEFINES AUTISM AS A DEVELOPMENTAL DISABILITY THAT CAN CAUSE SIGNIFICANT SOCIAL, COMMUNICATION AND BEHAVIORAL CHALLENGES.

BUT, ANYONE WHO HAS BEEN AFFECTED KNOWS THAT AUTISM SPECTRUM DISORDER OR ADS ASD AS IT IS REFERRED TO ARE A BROAD RANGE OF CONDITIONS THAT ARE HARD TO DEFINE AND EVEN HARDER TO DIAGNOSES.

WE'VE GATHERED A PANEL OF EXPERT TO HELP US UNDERSTAND WHAT DEFINES AUTISM AND HOW IT IS DIAGNOSED.

WE WELCOME TO OUR STUDIO Dr. GREGORY BARNS, HEAD OF THE NORTON AUTISM CENTER AND CHAIR OF THE COUNCIL ON AUTISM.

Dr. TOOMEY, DEVELOPMENTAL PEDIATRICIAN FROM U.K. HEALTHCARE AND KENTUCKY CHILDREN'S HOSPITAL IN LEXINGTON AND SUSAN MILLS IS THE MOTHER OF A NINE-YEAR-OLD SON ON THE AUTISM SPECTRUM.

SHE IS ALSO AN AUTHOR, PODCAST AND TALK SHOW HOST AND THE FOUNDER AND EXECUTIVE DIRECTOR OF THE NON-PROPHET MY AUTISM TRIBE.

THANK YOU ALL FOR BEING HERE AND SHOW SHARING YOUR STORIES WITH US.

FIRST WE BRING YOU THE VAUGHN FAMILY.

THEIR YOUNG SON WAS DIAGNOSED AT A YOUNG AGE.

IS 16 YEARS OLD NOW AND THRIVING.

HIS PARENTS SAY MUCH OF THAT IS BECAUSE OF THE STEPS THEY TOOK EARLY ON.

>> JAMES WAS A VERY HAPPY BABY.

HE WAS VERY JOYFUL AND JUB LENT.

HE WOULD JUBILANT.

HE WOULD GIGGLE A LOT.

YOU COULD SEE THE LIGHT IN HIS EYES.

>> HE CRAWLED EARLY.

AND IT WAS STEP, STEP, RUN.

HE WOULD TAKE A COUPLE OF STEPS AND AFTER THAT, HE JUST RAN EVERYWHERE.

BUT HE WAS NOT A POINTER.

HE DIDN'T POINT AT ALL DURING THOSE EARLY YEARS.

BUT IF HE WANTED SOMETHING, HE WOULD GUIDE OUR HANDS TO THE OBJECT OR TO WHATEVER IT WAS HE WANTED OR HE NEEDED.

PROBABLY THE EARLIEST SIGN THAT WE NOTICED IS THAT WE DIDN'T ALWAYS GET YES OR NO ANSWERS FROM JAMES.

JAMES WOULD RECITE THE BOOKS WE WOULD READ BUT IF WE ASKED HIM WOULD YOU LIKE EGGS OR WOULD YOU LIKE RICE, WE WOULDN'T GET A YES >> PROBABLY BEFORE MARY EVEN NOTICED, I KIND OF STARTED DOING A LITTLE ONLINE RESEARCH ON MY OWN, JUST SEEING SIGNS AND SYMPTOMS AND I WAS LIKE, THIS MAY BE HIM.

BUT WE'LL SEE HOW IT GOES.

>> BUT THAT EXPRESSIVE LANGUAGE PIECE WAS THE FIRST SIGN THAT WE SAW THAT SOMETHING WAS NOT EXACTLY TYPICAL WITH JAMES' DEVELOPMENT.

AT THREE YEARS OLD, WHEN WE PUT HIM IN PRESCHOOL THAT FIRST DAY, THEY TOLD ME, OH WELL, HE CAN'T TRANSITION TO MUSIC CLASS.

THAT WAS THE FIRST STEP.

WELL NOW IT'S NOT JUST SPEECH.

IT'S ALSO SOMETHING ELSE.

WE STARTED PRIVATE O.T.

THERAPY, AND WE ALSO STARTED THE SPEECH.

AND THEN BY THE TIME HE REACHED KINDERGARTEN, THAT IS WHEN WE REACHED OUT FOR THE COMMUNITY DIAGNOSIS AND WE RECEIVED A COMMUNITY DIAGNOSIS OF AUTISM.

>> IT WASN'T A COMPLETE SHOCK BUT IT STILL TOOK TIME TO ABSORB THE DIAGNOSIS.

>> YOU LEARN SOMETHING REALLY QUICK IS THAT YOU HAVE TO BE HIS ADVOCATE.

KIDS CAN'T EXPLAIN THEMSELVES.

YOU HAVE TO BE THE ONE TO KIND OF PUMP THEM UP AND BE A VOICE FOR WHAT YOU KNOW YOU CAN DO WHAT YOU SEE DAY TO DAY.

YOU KIND OF HAVE TO HAVE KIND OF WHOLE CONGLOMERATE OF THINGS TO HELP HIM, AND THOSE PRACTITIONERS WE WENT TO DID THAT.

THE SPEECH DID THAT O.T., WHEN HE TRANSITIONED TO BEHAVIOR THERAPY.

>> THE AMOUNT OF INFORMATION, THE EXPERIENCE, THE INPUT WE GOT TO HELP JAMES AS HE WENT THROUGH THESE THERAPIES, I MEAN IT JUST OPENED UP ANOTHER WORLD.

I STILL REMEMBER MY MOTHER SAYING HE WILL GROW OUT OF IT, OUT OF SOME OF IT.

AND AT THE TIME, I LISTENED TO HER BUT I DIDN'T REALLY UNDERSTAND WHAT SHE MEANT.

I THOUGHT SHE IS MEANT, OH, IT GO JUST GO AWAY.

SHE DIDN'T SAY THAT BUT IN MY MUBD MIND IT WAS ALL A LOT TO PROCESS.

BUT I FEEL THAT SHE MEANT HE WILL GROW, AND HE HAS AND WE ALL HAVE GROWN.

NOTHING HAS STAYED STATIC.

HE WILL GROW.

WE ALL WILL GROW.

>> WONDERFUL STORY.

AS THE SAYING GOES, IF YOU HAVE MET ONE PERSON WITH AUTISM, YOU HAVE MET ONE PERSON WITH AUTISM.

NO TWO PEOPLE ARE ALIKE.

IT MAKES THIS HARD TO NAVIGATE.

AS A DOCTOR AND RESEARCHER, HOW DO YOU DEFUN AUTISM Dr. BARNS?

>> AUTISM IS DEFINED AS DIFFERENCES OR DIFFICULTIES WITH SOCIAL INTERACTIONS AS WELL AS SOCIAL COMMUNICATION.

WE OFTEN FIND CHILDREN HAVING DEVELOPMENTAL DELAY WITH THAT.

ALONG WITH THAT, THERE IS ALSO THE APPEARANCE OF SO CALLED REPETITIVE BEHAVIORS.

AND WE'LL TALK ABOUT SOME OF THOSE BEHAVIORAL FLAGS IN A FEW MUNTS WITH Dr. TOOMEY.

YOU ALSO SEE OFTEN TIMES DIFFICULTIES WITH SENSORY STIMULI.

THIS IS MANIFESTED SOMETIMES IN CHILDREN HAVING DIFFICULTY EITHER EXPANDING THEIR DIET OR THEY LIVE ON A VERY RESTRICTED DIET.

SO THOSE DIFFICULTIES HAVE TO BE ATTENDED TO.

AND AS NOTED IN THE SEGMENT THERE, FOR ALL OF THOSE SYMPTOMS, EARLY INTERVENTION IS INCREDIBLY IMPORTANT IN THE LIFE OF A CHILD WITH AUTISM.

>> YES, ABSOLUTELY.

AND WE'LL TALK MORE ABOUT THAT, TOO.

THE NUMBERS WE TALKED ABOUT, THOUGH, ARE REALLY SIGNIFICANT.

AS I MENTIONED, MOSTLY DUE TO INCREASED AWARENESS.

DO YOU THINK THERE ARE ANY OTHER UNDERLYING FACTORS TO EXPLAIN THAT KIND OF INCREASE?

>> WELL, THAT'S AWE VERY GOOD-- THAT'S A VERY GOOD QUESTION.

WE CERTAINLY HAVE AN INCREASE IN NUMBERS OF DIAGNOSTIC CENTERS WITHIN NOT ONLY THIS COUNTRY BUT ALSO THROUGHOUT THE WORLD.

AND AS WE LOOK AT THE WHOLE WORLD, THE INCIDENTS BEING SOMEWHERE IN THE 1.5 TO 3% RANGE IS PRETTY CONSISTENT THROUGHOUT THE WORLD.

SO ALTHOUGH AUTISM IS CONSIDERED TO BE VERY INHERITABLE, THE OTHER PART OF THAT, AND IT MAY EXPLAIN SOME OF THE RISE IN AUTISM, BECAUSE ABOUT 70% CAN BE EXPLAINED BY THE INCREASED DIAGNOSIS.

BUT ABOUT 30%, THE LITERATURE SAYS, THERE ARE OTHER FACTORS THAT ARE INVOLVED THERE.

WE CALL THEM THE NON-GENETIC FACTORS.

SOME PEOPLE CALL THEM THE ENVIRONMENT, AS A WHOLE.

AND THERE IS A HUGE FIELD OF AUTISM THAT IS DEDICATED, IN TERMS OF RESEARCH, DEDICATED TOWARDS STUDYING THOSE FACTORS.

>> THERE ARE ALSO SOME NEW WAYS THAT AUTISM IS BEING DIAGNOSED.

WHAT DO WE KNOW ABOUT THIS?

THERE ARE SOME NEW RESEARCH ABOUT HOW TO DIAGNOSE ASD?

>> AND I THINK YOU SAID A KEY WORD THERE.

EVERYBODY IS LOOKING AT THIS IN RESEARCH AND THE IDEA IS THAT YOU KNOW, CURRENTLY AUTISM IS DIAGNOSED THROUGH LOOKING AT BEHAVIORS FOR THE MOST PART.

AND THEIR LENS, IN DOING THAT, THERE DOES SEEM TO BE SOME INACCURACY IN THAT.

SO PEOPLE ARE LOOKING AT MORE OBJECTIVE WAYS TO DO DIAGNOSIS: FOR INSTANCE, THERE ARE A NUMBER OF CENTERS THAT ARE LOOKING AT DOING IMAGING STUDIES OF THE BRAIN.

AND THERE ARE DIFFERENCES IN TERMS OF THE AUTISM BRAIN VERSUS TYPICALLY DEVELOPING CHILD, BOTH AGE AND SEX MATCHED.

WE DO-- WE HAVE A PROGRAM LIKE THAT HERE AT THE UNIVERSITY OF LOUISVILLE.

BUT ALL OF THOSE ARE NOT READY FOR PRIME TIME YET.

THEY HAVE NOT BEEN TESTED IN THE REAL WORLD.

ARE THEY IN FRONT OF THE FDA NOW?

YES.

THERE ARE MANY OF THOSE DIFFERENT DIAGNOSTIC, MORE OBJECTIVE DIAGNOSTIC TECHNOLOGIES IN FRONT OF THE FDA.

BUT OTHER THAN-- THEY'RE NOT IN WIDESPREAD USE.

WE DO THE MORE TRADITIONAL DIAGNOSIS OF HAVING A PSYCHOLOGIST, ALONG WITH DEVELOPMENTAL BEHAVIORAL PEDIATRICIANS, OCCUPATIONAL THERAPISTS, SPEECH THERAPISTS LOOKING AT THE CHILD AND DIAGNOSING THIS BEHAVIORALLY FOR NOW.

>> THE RESEARCH IS JUST CHANGING SO RAPIDLY, AND I KNOW IT'S HARD TO KEEP UP WITH.

WE'LL TALK A LITTLE BIT ABOUT THAT DIAGNOSIS WITH Dr. MARISSA TOOMEY WHO SPECIALIZES IN DIAGNOSING CHILDREN WITH AUTISM.

GETTING THAT DIAGNOSIS THOUGH CAN BE SO DIFFICULT BECAUSE AS WE SAW, THE SYMPTOMS ARE NOT UNIVERSAL.

WE HEARD FROM THE VAUGHNS WHO SAID, YOU KNOW, SOME OF THE SYMPTOMS THAT THEY HAD BUT WHAT ARE SOME OF THE THINGS YOU LOOK FOR WHEN YOU ARE DIAGNOSING A CHILD WITH AUTISM?

>> ABSOLUTELY.

SOME OF THE THINGS I LOOK FOR WHEN I'M MAKING AN AUTISM DIAGNOSIS IS A DIFFERENCE IN THE WAY THAT CHILDREN EXPRESS HOW THEY'RE FEELING OR WHAT THEY ARE THINKING.

SOMETIMES CHILDREN APPEAR TO BE OFF TO THEMSELVES BUT THEY'RE ACTUALLY PROCESSING THE WORLD AROUND THEM.

AND THEY MAY SHOW THIS BY SMILING AT THE TOYS IN FRONT OF THEM, BY MOVING THEIR BODY IN EXCITED WAYS, FLAPPING HANDS OR RUNNING BACK AND FORTH.

AND REALLY WHAT THEY'RE SAYING TO THE PEOPLE IN THE ROOM IS, I'M HAVING A GREAT TIME.

OR THEY MIGHT THROW TOYS DOWN AND SAY I AM NOT HAVING THE BEST TIME.

SO I'M OFTEN LOOKING FOR A CHILD TO TELL ME, THROUGH THEIR OWN WAY, HOW IT IS THAT THEY'RE THINKING AND THEY'RE FEELING.

I THINK THE VAUGHNS DID A VERY NICE JOB OF MENTIONING THAT SOMETIMES KIDDOS MAY NOT BE ABLE TO SAY THAT YET AT THE TIME THAT THEY'RE FIRST DIAGNOSED WITH AUTISM.

THEY MAY NOT HAVE LANGUAGE YET.

>> SO YOU HAVE A SORT OF LIST THAT YOU GO THROUGH WITH SOCIAL SKILLS, BEHAVIORAL KIND OF RED FLAGS, YOU WOULD SAY, THAT PARENTS NEED TO BE AWARE OF.

WHAT ARE THOSE?

>> SO THANK YOU FOR ASKING ME THAT QUESTION.

SOME OF THE SOCIAL SKILLS RED FLAGS THAT WE THINK ABOUT ARE A CHILD WHOSE HEARING IS APPROPRIATE BUT NOT ABLE TO RESPOND WHEN THEIR NAME IS CALLED.

WE SOMETIMES SEE CHILDREN NOT SHARE THEIR INTERESTS WITH THEIR FAMILY MEMBERS, NOT MAKE AS MUCH EYE CONTACT AS OTHERS IN THE FAMILY DO.

NOT DIRECT A VARIETY OF DIFFERENT FACIAL EXPRESSIONS.

ANGRY, HAPPY, SCARED.

AND NOT, LIKE THE VAUGHNS MENTION, NOT BE ABLE TO USE THEIR HANDS TO COMMUNICATE.

SO GESTURES LIKE WAVING, BLOWING KISSES, OR NOT POINTING TO INDICATE THEIR WANTS OR THEIR INTERESTS.

ON THE BEHAVIOR SIDE OF THUNKS THINGS, THERE ARE SOME RED FLAGS WE THINK ABOUT.

SOME CHILDREN MIGHT FLAP THEIR HANDS WHEN THEY'RE EXCITED, ROCK THEIR BODY WHEN THEY'RE ANGRY OR SPIN THEMSELVES IN CIRCLES TO COMMUNICATE HOW THEY'RE FEELING.

SOME CHILDREN MIGHT REPEAT WORDS OR PHRASES AS A MEANS OF EXPRESSING HOW THEY'RE FEELING WITHIN.

AND EVEN IF THOSE AROUND THEM ARE NOT TALKING ABOUT, FOR EXAMPLE, THE TV SHOW THAT THEY'RE REPEATING FROM.

SOME KIDDOS MIGHT BECOME UPSET IF THEY HAVE CATEGORIZED THINGS IN ORDER AND SOMEONE MOVES SOMETHING OUT OF LINE AND SOME KIDDOS MIGHT BECOME QUITE UPSET IF THERE IS A SMALL CHANGE IN THEIR ROUTINE, IF THE FAMILY HAS TO DRIVE A DIFFERENT WAY IN THE CAR TO A FAMILIAR PLACE.

MANY KIDDOS HAVE INTERESTS AS CHILDREN, BUT SOMETIMES IF YOU ARE ON THE AUTISM SPECTRUM, THOSE INTERESTS ALMOST BECOME AN OBSESSION, WHERE MUCH OF YOUR DAY IS SPENT WITH THEM.

AND SOME KIDDOS MAY FOCUS ONLY ON PARTS OF TOYS SUCH AS OPENING AND CLOSING DOORS REPETITIVELY ON CARS.

THE FINAL THING WE THINK THROUGH IS SENSORY, LIKE Dr. BARNES SAID, RESPONSE TO SMELLS AND TASTE AND TOUCH AND SOUND AND IT CAN BECOME OVERWHELMING FOR SOME CHILDREN IN COMMON PLACES LIKE RESTAURANTS OR GROCERY STORES.

>> IT'S SO HARD BECAUSE SO MANY OF THOSE THINGS MIGHT BE SOMETHING FOR A NEUROTYPICAL CHILD AS WELL.

IT'S SO HARD TO FIGURE OUT AND SO HOW ARE CHILDREN TESTED AND FOR THAT OFFICIAL DIAGNOSIS AND WHEN?

>> THANK YOU FOR THAT QUESTION.

SO THE WAY THAT CHILDREN ARE TESTED FOR AN OFFICIAL DIAGNOSE OF AUTISM IS REALLY THAT WE ARE LOOKING FOR TWO THINGS: WE TALK TO FAMILIES TO FIND OUT WHERE THE KIDDOS STRENGTHS ARE AND WHERE THE AREAS OF CONCERN HAVE BEEN.

WE TALK ABOUT SOCIAL SKILLS WITH FAMILIES AND BEHAVIORS THEY MIGHT HAVE NOTICED.

AND THEN WE ALSO DO DIRECT DEVELOPMENTAL TESTING WITH CHILDREN.

STARTING AROUND THE AGE OF 18 MONTHS, WE FEEL THAT OUR DEVELOPMENTAL TESTING FOR AUTISM IS ACCURATE IN MAKING A DIAGNOSIS.

AND IT'S ALL PLAY BASED.

WE BRING OUT A BUNCH OF TOYS AND WE SEE WHAT HAPPENS WITH WE GET DOWN ON THE GROUND AND WE PLAY WITH KIDDOS.

I ALWAYS SAY THAT I HAVE THE BEST JOB WITHIN PEDIATRICS BECAUSE I GET TO PLAY WITH MY PATIENTS AND HELP MAKE DIAGNOSIS AT THE SAME TIME.

>> RESEARCH SHOWS THE FIRST THREE YEARS OF A CHILD'S LIFE ARE THE MOST IMPORTANT TIME FOR DEVELOPMENT AND LEARNING.

IN KENTUCKY THERE IS A STATEWIDE EARLY INTERVENTION SYSTEM THAT PROVIDES SERVICES TO CHILDREN WITH DEVELOPMENTAL DISABILITIES FROM BURTDZ TO AGE-- FROM BIRTH TO AGE 3.

YOU MAY KNOW IT AS FIRST STEPS.

Dr. TOOMEY, I'LL START WITH YOU ABOUT THAT EARLY INTERVENTION PIECE THAT WE HEARD FROM THE VAUGHNS AND WE HEAR SO MUCH.

IT'S SO IMPORTANT.

TELL US WHY.

>> ABSOLUTELY.

SO EARLY INTERVENTION IS IMPORTANT BECAUSE A CHILD'S BRAIN IS GROWING AND DEVELOPING RAPIDLY AT THE EARLIEST STAGES.

AND WE THINK THAT ANY DEVELOPMENTAL SKILLS THAT THEY ARE ABLE TO ACCESS AND PICK UP DURING THOSE EARLY YEARS ARE LIKELY TO STAY WITHIN WHAT WE CALL THEIR DEVELOPMENTAL TOOLKIT.

MEANING THINGS THAT THEY CAN USE TO EXPRESS THEMSELVES, TO KEEP THEMSELVES SAFE IN TIMES WHEN THEY'RE IN SCHOOL AND BEYOND.

AND THE EARLIER YOU ACCESS THINGS LIKE SPEECH AND OCCUPATIONAL AND BEHAVIORAL THERAPY, THE MORE LIKELY THAT THE SKILLS YOU GAIN WILL STAY WITH YOU.

>> AND SUSAN-- GO AHEAD.

>> IT'S VERY IMPORTANT TO REALIZE THAT DEVELOPMENT L TOOLKIT IS A WINDOW.

THAT WINDOW DOES, IN FACT, CLOSE WITH TIME.

AND FROM A STANDPOINT OF IF YOU ACTUALLY DO MEASUREMENTS OF SAY IN THEIR BRAIN WAVES AND OF A CHILD, YOU CAN ACTUALLY SEE THEM GO MORE TOWARDS LOOKING LIKE NEUROTYPICALS IF THEY HAVE EARLY INTERVENTION.

SO IT'S REALLY IMPORTANT TO UNDERSTAND THAT THAT WINDOW CLOSES.

SO IDENTIFICATION IS VERY IMPORTANT.

GETTING SERVICES IS VERY, VERY IMPORTANT BECAUSE YOU MAY MISS THAT WINDOW TO BE ABLE TO STRENGTHEN THOSE CONNECTIONS BETWEEN THE NERVE CELLS THAT ARE LACKING IN AUTISM.

>> AND SUSAN, I'LL BRING YOU IN AS A PARENT.

I KNOW YOU HAD A LOT OF EARLY INTERVENTION SERVICES AND NOW YOU WORK WITH PARENTS IF THE SAME BOAT.

WE HEARD ALSO FROM THE VAUGHNS, YOU BEING A PARENT ADVOCATE IS SO IMPORTANT WHAT DO YOU TELL PARENTS WHO MAY NOT KNOW WHERE TO GO OR WHAT TO DO?

>> WELL, I ALWAYS SHARE PERSONAL EXPERIENCES, AND I ALWAYS SAY THESE ARE OUR PERSONAL EXPERIENCES THAT MAY NOT BE THE JOURNEY FOR YOUR FAMILY.

BUT I LEARNED VERY EARLY ON, PROBABLY THE WORST THING I COULD HAVE DONE IS START GOOGLING RIGHT AWAY.

I WENT DOWN RABBIT HOLES I HAD NO-- I DIDN'T NEED TO BE GOING DOWN.

I ALWAYS TELL PARENTS FOR THE FIRST YEAR, I GOOGLED FOR WAYS TO BLAME MYSELF.

INSTEAD OF IMMEDIATELY TURNING STRAIGHT INTO, YOU KNOW WHAT?

WE ARE JUST GOING TO HIT THE GROUND RUNNING HERE.

MY SON RECEIVED HIS DIAGNOSIS AT THE AGE OF TWO AND A HALF AND THE DOCTORS, WE SAT IN A ROOM, YOU KNOW, LIKE Dr. TOOMEY.

THEY PLAYED WITH HIM.

HE HAD THE TIME OF HIS LIFE.

AND AT THE END OF THE FOUR HOURS, HE RECEIVED THE DIAGNOSIS.

IT DID FEEL LIKE EVEN THOUGH I HAD SUSPICIONS OF, YOU KNOW, IT FELT LIKE GETTING HIT BY A MACK TRUCK.

THERE IS A LOT TO PROCESS.

AND A LOT OF ORDERS THAT THE DOCTOR GIVES YOU.

HE BASICALLY WRITES YOU A TICKET AND SENDS YOU HOME WITH ORDERS TO DO AND THAT IS EARLY INTERVENTION.

TIME IS OF THE ESSENCE.

HIS BRAIN IS MOLDABLE.

GET HIM INTO THERAPY.

SO THAT'S WHAT WE TRIED TO DO.

YOU KNOW, I THINK ALONG THE WAY, WE HAVE ENCOUNTERED MULTIPLE WAITING LISTS.

JUST AS WE HAD A WAITING LIST FOR THE DIAGNOSIS PROCESS AS WELL, UNFORTUNATELY.

BUT HE DID RECEIVE THE DIAGNOSIS AT TWO AND A HALF AND HE DID RECEIVE EARLY INTERVENTION.

SO WE ARE THANKFUL FOR THAT.

>> THERE ARE SO MANY RESOURCES OUT THERE, BUT IT'S FINDING THEM , NAVIGATING THAT WORLD IS NOT ALWAYS EASY.

THE AVA CENTER-- ABA CENTER USES APPLIED BEHAVIORAL THERAPY TO HELP PEOPLE ON THE SPECTRUM AND THE KELLY CENTER IN BOWLING GREEN IS A K-12 PROGRAM.

BOTH FOCUSED ON EDUCATION, BUT AS YOU SAY, THE NEED FAR OUTWEIGHS THEIR REACH.

>> CAN YOU WAVE?

>> HI.

>> WHAT WE DO AT THE ABA CENTER ITSELF THE FULL SPECTRUM OF SERVICES FOR SOMEBODY ON THE SPECTRUM.

WE TAKE KIDS IN THE PROGRAM BETWEEN THE AGES OF 2-12.

WE HAVE PART-TIME LEARNERS AND FULL-TIME LEARNERS.

WE HAVE SOME LEARNERS FIVE DAYS A WEEK, WE HAVE SOME THAT ARE TWO DAYS A WEEK, THREE DAYS A WEEK.

THIS IS VERY FUN, VERY INTERACTIVE.

AS YOU WALK THE HALLS, YOU WILL SEE SMILES ON THEIR FACES AND REALLY ENGAGED, REALLY LOVING WHAT THEY'RE DOING.

>> NO MORE MONSTERS JUMPING ON THE... >> GRAVE.

>> THE LARGEST ABA CENTER IN THE NATION RIGHT NOW.

IT HAS ALL THE ADVANCEMENTS.

THE PROBLEM IS THERE IS A GREAT NEED AND THE NEED, WHEN YOU LOOK IN PIKEVILLE, WE HAVE FAMILIES DRIVING FROM ALL OVER THE REGION, FROM FLOYD COUNTY JOHNSON, MARTIN, YOU NAME IT.

WE HAVE FAMILIES DRIVING.

THAT FACILITY IN PIKEVILLE WILL HOLD 120 KIDS WE HAVE ABOUT 90 KIDS IN THE PROGRAM RIGHT NOW, BUT EVEN NOW IN PIKEVILLE, AND WITH NOW THE LOCATION WITH 90 KIDS IN THE PROGRAM, WE HAVE OVER 500 KIDS ON THE WAITING LIST.

SO THE NEED IS GREAT.

>> GREEN!

GOOD JOB!

>> AUTISM IS NOT A DISABILITY.

A LOT OF PEOPLE THINK OF IT AS SUCH.

IT'S JUST A DIFFERENT ABILITY AND WHAT ABA DOES, IT ALLOWS THEM TO OPEN UP THEIR MINDS AND OPEN UP THEIR WAYS OF COMMUNICATION AND GIVES THEM A VOICE IN A WAY THAT THEY HAVEN'T HAD BEFORE.

TO HEAR A CHILD SPEAK FOR THE FIRST TIME AT THE AGE OF 6 IS AMAZING.

TO SEE A FATHER DROP TO THEIR KNEES AND CRY AND SAY I NEVER THOUGHT WOULD I HEAR MY DAUGHTER'S VOICE.

THE FIRST TIME SHE SAYS DADDY, IT'S REMARKABLE AT WHAT THE PROGRAM DOES AND WHAT OUR STAFF DOES.

I CAN'T PUT INTO WORDS WHAT IT MEANS FOR A FAMILY.

MY HOPE IS WHETHER IT HAS ABA'S NAME ON THE FRONT OF IT OR NOT TO HAVE CENTERS SET UP ALL THROUGH STATE SO EVERY CHILD THAT CAN BE HELPED WITH THIS TYPE OF THERAPY IS GIVEN THE OPTION AND THE OPPORTUNITY TO DO SO.

>> WE'LL TAKE CARE OF THEM, WON'T WE?

>> HAVING AUTISM, I COULDN'T READ WELL, COUNTY WRITE WELL, I COOPERATE SPEAK WELL.

IT HAS AFFECTED ME SOCIALLY AND ACADEMICALLY.

>> WE WORK WITH ADULTS WHO ARE ATTENDING COLLEGE AND THAT'S OUR KELLY AUTISM CIRCLE OF SUPPORT.

THEY COME HERE FOR ACTIVITIES WHERE WE ARE TRYING TO BUILD DIFFERENT SKILLS.

WE WILL HAVE GUEST SPEAKERS OR SOME OF THE STAFF WILL DO PROGRAMS WITH THEM SUCH AS PROFESSIONALISM.

WE'LL WORK ON THEIR RESUME, MOCK INTERVIEWS.

>> WE TALK ABOUT FINANCE, WE TALK ABOUT DIFFERENT THINGS, HOW TO DO SCHOOL WORK, TALK TO MY MENTORS, TELL THEM WHAT HAS BEEN GOING ON IN MY CLASSES, WHAT DO I HAVE TO DO.

>> BUT THEY ALSO DO MANY OTHER THINGS, LIKE THEY HELP THEM CONNECT TO THE CAMPUS.

THEY HELP THEM MAYBE TO COMMUNICATE IF THEY'RE HAVING AN ISSUE, IF SOMETHING IS GOING ON.

>> IT HAS HELPED ME TALK TO TEACHERS AND HAVE THEM UNDERSTAND, HEY, I'M HAVING ISSUES WITH THIS CLASS.

>> THEY HELP THEM TO ORGANIZE.

THAT'S A BIG ONE AND PRIORITIZE.

>> WE WOULD HAVE SOCIALS SO ONE NIGHT WE WOULD HAVE MOVIE NIGHT AND ANOTHER ONE WOULD BE VIDEO GAME NIGHT.

>> THIS PLACE HAS CHANGED ME MENTALLY AND EMOTIONALLY BY BEING HERE AND HELPING ME.

>> WE TALK ABOUT AUTISM AWARENESS.

IT'S ONE THING TO BE AWARE.

A WHOLE OTHER THING TO BE ACCEPTING AND ANOTHER LEVEL WHEN WE TAKE ACTION AND GO WHAT CAN I DO TO MAKE SURE THAT I AM BEING SUPPORTIVE AND HELPFUL WITH OTHERS.

I THINK THAT WE ARE AS A RESULTING TO REALIZE THE POTENTIAL AND THE STRENGTHS THAT AUTISM CAN BRING TO YOU.

>> THEY CAN DO SPECTACULAR THINGS.

YOU ARE REALLY OPEN MINDED AND HAVE SO MANY IDEAS THAT CAN TRANSFORM THE WORLD.

I WILL BE EXCITED TO GET THAT DIPLOMA.

>> AND TO BE ABLE TO STAND ON THAT HILL AND APPLAUD THEM FOR THEIR HARD WORK AND THE FACT THAT WE WERE ABLE TO BE A SMALL PART OF THE SUPPORT THAT HELPED THEM TO MAYBE BUILD SOME SKILLS, MAYBE HONE SOME SKILLS, TO BE A PART OF THEIR LIFE.

IT JUST DOESN'T GET ANY BETTER THAN THAT.

>> IT FEELS LIKE THIS IS MY SECONDARY MOMENT HOAMENT, MY SECOND-- IT FEELS LIKE MY SECONDARY HOME AND FAMILY.

>> THERE ARE RESOURCES AVAILABLE THROUGH KROUT THE STATE AND THERE ARE MORE EFFORTS TO BRING IN MORE HUBS THROUGHOUT THE STATE.

TO TALK A LITTLE BIT MORE ABOUT THIS ASPECT OF NAVIGATING THE SYSTEM, SUSAN MILLS IS STILL HERE WITH US, THE PARENT AND EXECUTIVE DIRECTOR OF THE NON-PROFIT MY AUTISM TRIBE.

WE WILL ALSO BRING IN TANYA STURGILL, AN AUTISM RESEARCH SPECIALIST WITH FAYETTE COUNTY PUBLIC SCHOOLS FOR THE PAST 20 YEARS, SCOTT BRINKMAN, FORMER STATE LEGISLATOR WHO IS A PARENT OF A CHILD WITH AUTISM.

AS A STATE LEGISLATOR, HE HELPED CREATE THE KENTUCKY COMMISSION ON AUTISM SPECTRUM DISORDER THAT CREATED INSURANCE COVERAGE FOR THE DIAGNOSIS AND TREATMENT OF ASD AND TINA BOJANOWSKI IS A PARENT OF A CHILD WITH AUTISM AND SPECIAL EDUCATION ELEMENTARY TEACHER FOR JEFFERSON COUNTY SCHOOLS AND MELANIE WEST IS THE EXECUTIVE DIRECTOR OF FAMILIES FOR EFFECTIVE AUTISM TREATMENT THAT ACTIVELY SUPPORTS PROGRAM, EDUCATION AND PROGRAMS FOR FAMILIES WITH AUTISTIC CHILDREN.

AS WE HEARD THERE ABOUT THE NEED, 500 PEOPLE ON A WAITING LIST.

I'LL START WITH OUR CURRENT STATE REPRESENTATIVE, TINA BOJANOWSKI, WHAT STILL NEEDS TO BE DONE?

I KNOW THERE ARE MANY EFFORTS UNDER WAY.

BUT HOW DO WE MEET THESE KNEADS-- HOW DO WE MEET THESE NEEDS.

>> I'LL TALK ABOUT THE MEDICAID WAIVER WAITING LIST.

WE HAVE SEVERAL DIFFERENT WAIVERS THAT FAMILIES OF CHILDREN WITH AUTISM MAY PARTICIPATE IN.

ONE IS CALLED THE MICHELLE P WAIVER AND THAT PROVIDES SUPPORTS FOR CHILDREN TO LIVE AT HOME RATHER THAN TO HAVE TO BE IN AN INSTITUTIONAL SETTING.

MICHELLE P WAIVER HAS A WAITING LIST OF 8284 PEOPLE, ABOUT 2,000 OF THOSE CHILDREN ARE ON ANOTHER WAIVER.

THERE IS ANOTHER WAIVER CALLED THE SUPPORTS FOR COMMUNITY LIVING WAIVER AND THERE IS A WAITING LIST OF 3172 PEOPLE.

SO I THINK-- I DO KNOW THAT THAT WAITING LIST HAS PEOPLE WHO, IF IT GOT TO THEIR NAME, THEY MAY NO LONGER NEED THOSE SERVICES OR THEY MIGHT NOT QUALIFY.

SO THAT'S NOT AN ABSOLUTE NUMBER, BUT I DO THINK THAT THE GENERAL ASSEMBLY NEEDS TO LOOK AT THESE LISTS.

THEY DO PERIODICALLY INCREASE THE FUNDING FOR THE WAIVERS BUT I THINK THAT WE NEED TO LOOK AT APPROPRIATING MORE MONEY TO SUPPORT PARENTS, TO BE ABLE TO GIVE THEIR CHILDREN THE SUPPORTS TO BE ABLE TO HAVE THEM LIVE AT HOME.

AND THEN THE SUPPORTS FOR COMMUNITY LIVING, WE HAVE A GROUP OF CHILDREN WITH AUTISM WHO ARE NOW GROWING UP AND WHAT ARE THEY GOING TO DO AS THEIR PARENTS AGE AND THEY NEED SUPPORT?

AND I HAVE A GROUP OF FAMILIES WITH WHOM I'M WORKING WHO ARE, YOU KNOW, THEY'ROTOMY SHELL P WAIVER,-- THEY'RE ON THE MICHELLE P. WAIVER BUT SHOULD THEY BE ON A DIFFERENT WAIVER BECAUSE THE CHILDREN DON'T HAVE THE SUPPORTS.

WE AS THE GENERAL ASSEMBLY NEED TO GO BACK AND LOOK AT THESE WAIVERS AND SEE WHAT CHANGES NEED TO HAPPEN TO SUPPORT FAMILIES AS THEY ARE TODAY.

>> IT IS A COMPLICATED ROAD MAP AND I KNOW YOU ALL HAVE DEALT WITH IT IN YOUR OWN FAMILIES AND OF COURSE IN YOUR PROFESSIONS NOW.

WHEN IT COMES TO EDUCATION, THAT AUTISM DIAGNOSIS THAT WE DISCUSSED, BEING DETERMINED BY A MEDICAL PROFESSIONAL, DOESN'T NECESSARILY MEAN THAT A CHILD WILL MEET THE REQUIREMENTS FOR SPECIAL EDUCATION INTERVENTION AT SCHOOL.

SO WE TALKED ABOUT THOSE INTERVENTION, HOW IMPORTANT THAT IS UP UNTIL AGE 3.

SO WHAT HAPPENS AFTER THAT?

AND I WANT TO TALK TO TANYA STURGILL ABOUT THE EVALUATIONS, THE MARKERS YOU ARE LOOKING FOR IN SCHOOL WHEN YOU ARE DOING THESE KINDS OF EVALUATIONS ON OLDER CHILDREN.

>> YES, THANK YOU FOR THE QUESTION.

WE ARE REALLY LOOKING AT THOSE SAME MARKERS THAT Dr. TOOMEY AND Dr. BARNES TALKED ABOUT EARLIER.

WE ARE LOOKING AT THEIR SOCIAL COMMUNICATION SKILLS, THE VERBAL AND THE NON-VERBAL, THEIR CONVERSATIONAL SKILLS, THEIR PLAY SKILLS, THEIR ABILITY TO TAKE THE PERSPECTIVE OF OTHERS, AS WELL AS THOSE PATTERNS OF REPETITIVE BEHAVIOR, SENSORY PROCESSING.

WITHIN THE SCHOOL SETTING, ONCE A STUDENT HAS A DIAGNOSIS OF AUTISM, ONE OF THE FIRST THINGS WE WANT TO DO IS HELP CONNECT THEM WITH THOSE COMMUNITY SUPPORTS AND SERVICES.

AND THEN OUR ROLE IS TO REALLY LOOK AT THE LEVEL OF IMPACT THAT MAY OR MAY NOT BE THERE BECAUSE OF THAT DIAGNOSIS AND DETERMINING WHETHER A STUDENT WOULD NEED SPECIAL EDUCATION SERVICES OR SIMPLY MODIFICATIONS WITHIN THAT CLASSROOM SETTING.

AND THAT BEGINS AT THE AGE OF 3.

WHAT IS WONDERFUL NOW IS THAT MOST OF OUR THREE YEAR OLDS THAT COME TO US ALREADY HAVE THAT DIAGNOSIS.

SO I'VE SEEN OVER THE YEARS, WE ARE ABLE TO DO THOSE EVALUATIONS AND DIAGNOSIS EARLY, AGAIN, TO GET THE EARLY INTERVENTION GOING THAT IS SO IMPORTANT.

>> WELL, THAT IS SO IMPORTANT, AND AS WE TALKED ABOUT, TOO, WE HAVE A GROUP OF THREE YEAR OLDS NOW WHO WERE BORN DURING COVID AND SO THAT HAS ALSO HAD A DRAMATIC IMPACT ON THAT EARLY INTERVENTION AND REPRESENTATIVE BOJANOWSKI, I KNOW YOU HAVE NUMBERS ABOUT WHAT THAT MEANS FOR THE STUDENTS.

>> KIND OF ANECDOTALLY, IT'S MY UNDERSTANDING THAT WE HAVE MAYBE 81 KIDS COMING OUT OF PRESCHOOL GOING INTO KINDERGARTEN WHO MIGHT HAVE MODERATE TO SEVERE DISABILITIES, NOT JUST AUTISM.

SO I DON'T KNOW SPECIFICS.

BUT YOU KNOW, THE IMPACT OF THE PANDEMIC ON FAMILIES HAVING LACK OF EARLY INTERVENTION AND, I MEAN I KNOW AS A PARENT, MY SON WAS DIAGNOSED AT TWO AND A HALF AND WE HAD THE THE UNIT TO DO AN EARLY INTERVENTION PROGRAM AND I ASKED A PROFESSOR FROM I.U., NANCY, AND SHE WAS A PREEMINENT SCHOLAR AND I WAS LIKE WHAT SHOULD I DO?

WHAT INTERVENTION.

AND SHE JUST SAID INTENSIVE.

BUT WHAT SHOULD I DO?

INTENSIVE.

SO IF THESE KIDS DON'T GET THE INTENSIVE INTERVENTIONS WHEN THEY'RE YOUNGER, THEY'RE GOING TO COME INTO SCHOOL WITH MORE NEEDS.

AND I THINK THAT WE ARE GOING TO HAVE MORE CHILDREN COMING INTO OUR SCHOOL SYSTEMS WITH MORE NEEDS AND THEN COMBINE THAT WITH OUR TEACHER SHORTAGE, WHICH, IN SPECIAL ED, IS MORE DIRE AND IN OUR SPECIAL CLASSES, EVEN MORE DIRE.

ARE WE GOING TO HAVE MORE CHILDREN AND FEWER EDUCATORS TO SUPPORT THEM?

THAT'S A MAJOR GAP IN OUR EDUCATION SYSTEM THAT WE NEED TO VERY MUCH PAY ATTENTION TO RIGHT NOW.

>> YEAH, SUSAN, WHAT DO YOU TELL FAMILIES WHO, YOU KNOW, BETWEEN ALL THE THERAPIES AND ALL THE THINGS, HOW DO THEY NAVIGATE THE SYSTEM ABOUT WHERE EVEN TO GO TO SCHOOL?

>> THERE ARE SO MANY LAYERS TO THAT BECAUSE EVERY SINGLE DAY THINGS ARE CHANGING AND I JUST ALWAYS TELL PEOPLE AND THEY PROBABLY HEARD IT BEFORE, TOO, IT'S NOT A SPRINT.

IT'S A MARATHON.

SO YOU START ONE PLACE AND YOU TAKE STEPS AND ASK AND DO AS MUCH RESEARCH AS POSSIBLE.

YOU WILL BECOME A RESEARCHER OF EVERYTHING.

YOU WILL BECOME A MEDICAL RESEARCHER.

YOU WILL BECOME AN EDUCATIONAL RESEARCHER.

ASK AS MANY QUESTIONS AS YOU CAN AND FIND YOUR TRIBE.

FIND THE PEOPLE WHO HAVE BEEN THERE AND HAVE DONE THAT; WHAT NOT TO DO, WHAT TO DO.

ASK EVERYONE, AS MANY PEOPLE AS YOU KNOW ABOUT THEIR PERSONAL EXPERIENCES AND WAS WORKED AND WHAT DIDN'T AND REACH OUT TO YOUR REPRESENTATIVES AS WELL, TOO, BECAUSE THEY CAN BE-- I THINK THE PARENTS ARE ALWAYS THE VOICES OF THEIR CHILDREN AND THESE REPRESENTATIVES CAN BE THE VOICE OF US, TOO.

>> AND SCOTT, I'LL BRING YOU IN, TOO, WHO HELPED PASS LEGISLATION TO MAKE SURE INSURANCE CAN PAY FOR SOME OF THESE THERAPIES IN KENTUCKY.

THOUGH AS WE SAW, EIGHT, 10-YEAR WAIT FOR SOME OF THESE WAIVERS?

WHERE DO YOU THINK THE BREAKDOWN IS HERE?

>> WELL, THE INSURANCE BENEFIT WAS PASSED IN 2010 AND INITIALLY HAD CAPS ON THE AMOUNT OF MONEY THAT COULD BE SPENT THROUGH A HEALTH PLAN ON AN INDIVIDUAL CHILD WITH AUTISM.

IT WAS AWJ LIMITED TO 21 AND THERE WAS A DIFFERENTIATION BETWEEN LARGE GROUP PLANS AND SMALL HEALTH PLANS.

IN 2018, THE GENERAL ASSEMBLY MODIFIED THE LEGISLATION AND REMOVED THE CAPS, REMOVED THE AGE AND PROVIDES THAT ALL HEALTH BENEFIT PLANS IN KENTUCKY HAVE TO PROVIDE THIS BENEFIT.

SO THE INSURANCE BENEFIT IS VERY ROBUST.

NOW PARENTS STILL HAVE TO WORK WITH THEIR HEALTH PLAN TO DEVELOP THE ARRAY OF SERVICES FOR THE INDIVIDUAL.

BUT AS TO THE WAIVERS, THERE IS NO QUESTION THAT IT IS A CHALLENGE, PARTICULARLY THE MICHELLE P AND THE SUPPORTS FOR COMMUNITY LIVING WAIVER.

BACK IN 2019, WHEN I WAS PART OF THE PRIOR ADMINISTRATION, WE WERE TAKING A HARD LOOK AT ALL OF WHAT WE CALL OUR 1915C WAIVERS INCLUDING MICHELLE P AND THE SUPPORTS FOR COMMUNITY LIVING WAIVERS TO TRY TO DETERMINE HOW BEST TO CONFIGURE THOSE TWO BEST ADDRESS THE NEEDS OF THE CONSUMERS, THE CLIENTS, BUT ALSO THE PROVIDERS AND THE FAMILIES AND CAREGIVERS AND THEN COVID CAME AND THAT PROJECT WAS INTERRUPTED.

BUT HOPEFULLY THE ADMINISTRATION AND THE GENERAL ASSEMBLY WILL TAKE A HARD LOOK AT THIS.

I KNOW WITHIN THE GENERAL ASSEMBLY THERE IS BROAD BIPARTISAN SUPPORT TO INCREASE THE NUMBER WHAT THEY CALL SLOTS FOR THE WAIVER PROGRAMS.

IN THE CURRENT GUY BIENNIALIAL BUDGET, IT'S MODEST BUT 50 ADDITIONAL SLOTS EACH YEAR FOR THE MICHELLE P AND 50 SLOTS TOTAL FOR SUPPORTS FOR COMMUNITY LIVING.

NOW ALSO IN THE BUDGET, WHICH WAS LONG OVERDUE, THERE IS INCREASED REIMBURSEMENTS FOR OUR PROVIDERS.

OUR PROVIDERS HAVE BEEN SQUEEZED FOR A NUMBER OF YEARS BECAUSE OF RISING COSTS, AND CLEARLY WE NEED A VERY STRONG PROVIDER NETWORK TO PROVIDE THE SERVICES.

SO I WAS VERY PLEASED THAT THE GENERAL ASSEMBLY FOUND THE FUNDS TO INCREASE REIMBURSEMENT TO THE PROVIDERS, BUT THAT'S ALL WITHIN THE MEDICAID BUDGET WHICH MEANS THOSE DOLLARS WERE NOT AVAILABLE TO FUND ADDITIONAL SLOTS.

SO IT'S A CHALLENGE, BUT I DO KNOW THAT THERE IS BROAD BABY SUPPORT-- BIPARTISAN SUPPORT TO START TO REALLY AGGRESSIVELY DRESS THE WAITING LIST.

>> AND MELANIE, AS DIRECTOR OF FEAT, I KNOW THAT YOU HELP FAMILIES COME UP WITH THEIR OWN ROAD MAP AND THAT'S THE THING, TOO.

EVERYBODY'S IS DIFFERENT.

AND WHAT DO YOU TELL PEOPLE ABOUT GETTING THOSE WAIVERS?

I'VE TALKED TO PARENTS WHO SAY THAT, I MEAN THEY'RE EDUCATED AND KNOWLEDGEABLE BUT HAVE TROUBLE NAVIGATING THE SYSTEM.

>> WHEN FAMILIES COME TO FEAT, WHETHER THEY WERE HANDED THE DIAGNOSE THAT DAY OR HANDED YEARSING OR SPECULATING THAT MAYBE THERE IS A DIAGNOSIS, WE MEET THEM WHERE THEY ARE AND START FROM THERE SO WE TELL THEM TO, ESPECIALLY IF IT IS A NEWLY DIAGNOSED INDIVIDUAL, USUALLY IT'S A CHILD WE TELL THEM, HERE ARE FOUR THINGS TO DO AND THEN CALL US BACK.

IT'S A LOT, YOU KNOW, AS SUSAN ALLUDED TO EARLIER.

IT'S A LOT TO TAKE ON.

IT CAN BE VERY ISOLATING WHEN GIVEN THE DIAGNOSIS SO WE WANT TO HELP GET THEM OFF THE ISLAND.

BUT TO EDUCATE THEY WILL AND TELL THEM TO GET ON THE WAIVER, YOU KNOW, IT IS THE NUMBERS ARE DAUNTING.

WE HAD ONE WHO WAS AWARDED A WAIVER THIS WEEK.

SO GET ON THERE AND SOME PEOPLE SAY, YOU KNOW, WE HAVE THE MEANS TO TO DO THIS.

WE DON'T NEED TO DO THAT BUT IT'S THERE.

AND GIVEN THE DIAGNOSIS, IT'S YOUR GOLD N TICKET TO SERVICES AND OPENS THE DOOR TO SO MANY OPPORTUNITIES TO GIVE YOUR LOVED ONE, YOU KNOW, THE BEST START THAT THEY CAN GET.

>> AND YOU DON'T KNOW WHAT IS DOWN THE ROAD, EITHER YOU CANS-- SO YOU MIGHT AS WELL TRY TO GET THAT.

IS THAT WHAT YOU SAY, TOO, SUSAN?

>> ABSOLUTELY.

I THINK ANY KIND OF RESOURCE-- I KNOW THAT SOME PARENTS OUT THERE MAY EVEN BEEN HESITANT IN RECEIVING A DIAGNOSIS TO ARE THEIR CHILD BECAUSE THEY DON'T WANT TO NECESSARILY HAVE A LABEL FOR THEIR CHILD.

HOWEVER, THAT LABEL IS GOING TO BE ABLE TO GET THEM THE BEST SERVICES POSSIBLE TO HAVE A GREAT START DOWN THE ROAD AND REACH OUT TO SERVICES LIKE FEAT IN LOUISVILLE.

JUST TO HELP, BECAUSE YOU DON'T THOUGH WHAT YOU DON'T KNOW.

THERE ARE ALWAYS THINGS-- EACH ROAD STOP THAT YOU HAVE THAT YOU NEED TO LEARN.

MY SON IS GETTING READY TO TURN 10.

I'M NOW TALKING WITH PARENTS WHO ARE JUST NOW RECEIVING THEIR DIAGNOSIS AND I'M ALSO TALKING TO PARENTS WHOSE CHILDREN ARE GOING THROUGH PUBERTY BECAUSE THAT'S WHERE MY SON IS GETTING READY TO ENTER AND THERE ARE THINGS I DON'T KNOW.

SO I THINK IT'S JUST RECEIVING THAT DIAGNOSIS AND GETTING, YOU KNOW, SUPPORTS.

THAT'S THE BEST THING.

>> THAT'S RIGHT.

AND FOR PEOPLE ON THE SPECTRUM, FEDERALLY MANDATED SERVICES THAT END AT THE AGE OF 21 UNDERSTAND WE TALKED ABOUT THE NEED FOR SOME THOUGH GOES INTO ADULTHOOD.

ONE IN 36 CHILDREN ARE DIAGNOSES WITH AUTISM.

IN KENTUCKY THAT'S ONE IN 54, THE MAJORITY OF THEM ARE ADULTS.

AND SO THAT IS ESTIMATED OVER THE NEXT FOUR YEARS MORE THAN 200,000 PEOPLE WILL BE IDENTIFIED ON THE AUTISM SPECTRUM WILL TURN 21.

WE WANT TO SHOW YOU A PROGRAM AT LIFEWORKS, WESTERN KENTUCKY UNIVERSITY'S KENTUCKY'S ONLY LIVING AND LEARNING TRANSITION PROGRAM FOR AUTISTIC YOUNG ADULTS TO TAKE A LOOK AT WHAT THAT NEXT STEP IS.

>> LIFEWORKS REPRESENTS THAT NEXT PHASE OF LIFE.

FOR ADULTS OR AFTER COLLEGE, AFTER HIGH SCHOOL, READY TO TAKE THAT NEXT STEP AND TO ADULTHOOD OF WORKING AND LIVING ON THEIR OWN.

WE ARE LOOKING FOR YOUNG ADULTS WITH LOW SUPPORT NEED AUTISM OR OTHER NEURODIVERGENT OTHER LEARNING DIFFERENCES WHO HAVE THE MOTOR-- WHO HAVE THE MOTIVATION AND DESIRE TO LIVE INDEPENDENTLY AND GO TO WORK.

THEY LIVE AT THE LIVING LEARNING COMMUNITY RIGHT NEXT DOOR.

THE TRANSITION ACADEMY CONSISTS OF HYBRID OF IN CLASS AND OUT OF CLASS LEARNING.

>> BUT WHAT I THINK THIS IS TRYING TO SHOW, IF THAT IS YOUR LIFESTYLE, THAT IS PROBABLY NOT GOING TO BE GOOD FOR YOUR SELF-ESTEEM.

>> ON A LIMITED BASIS, THE CLASSES AND OTHER TRAINING ACTIVITY.

IT'S ALL INDIVIDUALIZED.

WHEN WE ASK APPLICANTS, WHAT ARE YOUR GOALS, TOP THREE.

A LOT TALK ABOUT FINANCIAL MANAGEMENT OR I WANT TO MAKE FRIEND OR I WANT TO FIND EMPLOYMENT.

WE KIND OF COVER THE GAMUT WITH THEM.

>> I WANT TO LIVE ON MY OWN, BE INDEPENDENT.

I NEED TO WORK ON COMMUNICATIONS, MANAGING RELATIONSHIPS.

>> THE DIFFERENT CORE STUFF THEY WORK ON IN THE CLASSES, I WAS LIKE, I DON'T KNOW.

I FEEL COMFORTABLE WITH THOSE.

BUT WHAT PULLED ME IN, THEY WERE SUPER NICE AND LIKE WE ARE GOING TO FIGURE OUT WHAT EVERYBODY NEEDS AND I REALLY WANTED TO BE ABLE TO PROPERLY GET OUT OF THE HOUSE, HAVE A PLACE TO MYSELF TO PRACTICE SOME OF THE SKILLS THAT I WAS PRETTY SURE I COULD DO MYSELF, LIKE COOKING.

BUT HAVE A PLACE WHERE I FELT COMFORTABLE DOING SO.

>> GIVING THEM AN OPPORTUNITY TO BE RESPONSIBLE FOR THEIR OWN APARTMENTS AND BEING ON TIME AND MAINTAINING A SCHEDULE AND THOSE KINDS OF THINGS, REALLY HAS HELPED INCREASE THEIR SELF CONFIDENCE.

WE LIKE TO FOCUS ON EMPLOYMENT RIGHT AWAY.

FOR SOME WE MAY BE DOING JOB DEVELOPMENT OR JOB SHADOWING OR WORKING ON SCHEDULING INTERNSHIP.

WE HAVE FOUND EMPLOYMENT FOR THE PEOPLE THAT WE SERVE HAS BEEN LIFE CHANGING.

>> I WAS JUST KIND OF STUCK LIVING AT HOME WITH MY PARENTS AND I WAS IN A SMALLER TOWN THAT I DIDN'T REALLY LIKE VERY MUCH AND THERE JUST WASN'T ENOUGH EMPLOYMENT OPPORTUNITIES THERE.

>> I NEEDED HELP FINDING WORK.

I FELT KIND OF STUCK WHERE I WAS GOING TO BE STUCK ONLY TO THEN GO TO RETAIL, WHICH I KNEW WAS NOT GOING TO WORK FOR ME AT ALL.

BUT I HAD NO OTHER OPTIONS.

SO GETTING HERE AND HAVING PEOPLE WHO KNEW MORE RESOURCES AND COULD KIND OF GET ME IN THE DOOR BETTER WAS NICE.

>> WHAT WE ARE DOING IS NOT MAGIC.

IT'S JUST GIVING PEOPLE AN OPPORTUNITY TO PRACTICE LIFE AND LEARN HOW LIFE WORKS, WHETHER IT BE THROUGH EMPLOYMENT, DAILY LIVING SKILLS TRAINING, JUST HAVING THE OPPORTUNITY TO SOCIALIZE TOGETHER, JUST THOSE EXPERIENCES.

WE SEE IT WORKING.

>> WELL, OBVIOUSLY NOT ALL WILL NEED THIS TYPE OF RESIDENTIAL CARE, BUT OF COURSE IT IS A GREAT OPTION FOR SOME.

SCOTT AND TINA I KNOW YOU BOTH HAVE ADULT CHILDREN NOW.

WHAT HAS THAT EXPERIENCE BROUGHT ON OR WHAT DO YOU WANT TO TELL PEOPLE ABOUT THAT PHASE?

>> WELL, WE WERE VERY FORTUNATE BECAUSE MY WIFE INVESTIGATED EARLY ON WHAT SUPPORTS WERE THERE SO WE WERE ABLE TO GET ON THE WAITING LIST FOR THE SUPPORTS FOR COMMUNITY LIVING WAIVER, SO OUR SON DAVID DOES HAVE THE S.C.L.

WAIVER WHICH INCLUDES AN ARRAY OF SERVICES.

WE ARE VERY FORTUNATE.

FOR ANY PARENTS WHOSE CHILD IS DIAGNOSED WITH AUTISM, I STRONGLY ENCOURAGE THEM TO REACH OUT TO THE CABINET FOR HEALTH AND FAMILY SERVICES AND GET ON THE WAITING LIST FOR THE WAIVERS, AS QUICKLY AS POSSIBLE.

EVEN THOUGH THE NUMBERS ARE DAUNTING, THE SOONER YOU ARE ON THE WAITING LIST, THE BETTER THE OPPORTUNITY THAT EVENTUALLY YOU WILL GAIN ONE OF THOSE SLOTS.

AND THEN KEEP YOUR INFORMATION CURRENT, TOO.

THAT'S VERY IMPORTANT.

>> BECAUSE AS YOU MENTIONED, MEDICALLY, AS PEOPLE DO COME UP FOR THOSE WAIVERS, IF YOUR INFORMATION HAS CHANGED, THERE IS NO WAY TORE THEM TO GET IN TOUCH.

>> RIGHT AND THEY'RE GOING TO MOVE ON TO THE NEXT PERSON, UNFORTUNATELY.

>> THAT'S RIGHT.

TINA, TELL US ABOUT YOUR EXPERIENCE IN THIS SPACE?

>> WELL, IN MY DOCTORAL STUDIES I DID MY DISSERTATION ON STUDENTS WITH AUTISM GOING TO COLLEGE.

AND AS CHILDREN TRANSITION OUT OF HIGH SCHOOL, THERE IS LIKE A CLIFF WHERE THEY LOSE BENEFITS AND SUPPORTS.

AND IT'S VERY DIFFICULT TO HAVE THE RIGHT SUPPORTS TO GAIN ACCESS TO WHAT THEY NEED TO DO DURING THAT TRANSITION.

MY SON WAS ABLE TO DO AN ASSOCIATE'S DEGREE AT A COMMUNITY COLLEGE.

HE NOW CURRENTLY WORKS AT KROGER HE IS PRETTY CONTENT WITH HIS SOCIAL ACTIVITIES.

BUT IF THE COURSE OF MY STUDY, WHAT I DISCOVERED WAS THE MOST SIGNIFICANT NEED FOR OUR YOUNG ADULT CHILDREN WITH AUTISM IS EXECUTIVE FUNCTION.

THAT'S PLANNING, ORGANIZING, YOU KNOW, BEING ABLE TO FIGURE OUT HOW DO I STUDY FOR SOMETHING?

ALL OF THOSE ASPECTS, MAKING DECISIONS.

SO THERE IS A GREAT BOOK CALLED EXECUTIVE FUNCTION IN THE CLASSROOM.

AND I RECOMMEND IT FOR PARENTS OF CHILDREN WITH AUTISM AND ADHD AS A REAL GREAT SUPPORT FOR TOOLS TO HELP YOUR CHILDREN NAVIGATE EDUCATION THROUGH POST SECONDARY MORE THAN 35% ARE UNEMPLOYED.

FEAT IS ONE OF THE ORGANIZATIONS THAT'S HELP THE BUSINESS INITIATIVE.

MORE THAN 450 BUSINESSES INVOLVED ACROSS 1 STATES,-- 17 STATES, WHAT DO YOU TELL PARENTS OR ADULTS WITH AUTISM WHAT TO DO TO GET THAT EMPLOYMENT?

I WILL REFER TO IT AS A.F.B.I., IT WAS AN INITIATIVE SPEER HEEDED-- SPEARHEADED SINCE 2011 BY IS THE AFC GROUP.

A GROUP OF PROVIDERS THAT WE CONTINUE TO MEET WITH QUARTERLY TO FILL, YOU KNOW, WHAT ARE THE GAPS CURRENTLY.

THAT'S HOW THE A.F.B.I.

CAME ABOUT, THE FAWM FRIENDLY BUSINESS INITIATIVE.

BECAUSE OF THAT NEED RIGHT THERE.

YOU KNOW, INDIVIDUALS WITH AUTISM AND BREAKING THE STIGMAS AND PEOPLE USED TO SAY, OH CHILDREN, WELL, THEY GROW UP JUST LIKE WE ALL DO.

AND THEY WANT TO BE CONTRIBUTING CITIZENS LIKE YOU AND I.

SO FIGURING OUT A PROGRAM DESIGNED TO BREAK THOSE STIGMAS, EDUCATE, WHICH EDUCATION IS KEY TO ANY FUNDAMENTAL THING IN LIFE.

THAT EDUCATION PIECE AND STARTING WITH, YOU KNOW, WHAT AUTISM IS AND WHAT IT IS NOT, JUST REALLY CHANGING THAT.

AND SO THAT'S WHERE THE TRAINING PROGRAM CAME FROM SO WE WORK ON TRAINING BUSINESSES, AND AGAIN IT'S JUST, YOU KNOW, IT'S HERE EVEN AS A PROGRAM DEFINED FROM FEAT OF LOUISVILLE, THE PROGRAM HAS GONE ALL THE WAY TO THE WEST COAST, YOU KNOW, IT'S UP IN THE NORTHEAST.

IT'S DOWN IN THE SOUTH.

WE ARE, YOU KNOW, SO THANKFUL TO BE ABLE TO BE ABLE TO SPREAD THIS AWARENESS, BUT IT'S ALL, YOU KNOW, EDUCATING, HELPING BUSINESSES MAKE MODIFICATIONS.

I'M EXCITED TO SAY THAT MORE AND MORE BUSINESSES ARE MAKING SOME OF THOSE, AND WE ARE TALKING ABOUT SLIGHT MODIFICATIONS, MAYBE OFFERING A SPECIFIC SPACE, A QUIET SPACE OR A SENSORY TIME OR MAYBE JUST SOME OF OUR PARTNERS THAT ARE IN THE BANKING INDUSTRY, THEY HAVE SENSORY ITEMS AT EACH OF THEIR BRANCHES TO PROVIDE THAT WELCOMING ENVIRONMENT.

BUT THEN BRIDGING THAT EVEN FURTHER AND TALK ABOUT EMPLOYMENT OPPORTUNITIES, YOU KNOW, RESTRUCTURING THEIR HIRING PRACTICES, EVEN TALKING, YOU KNOW, WE'VE WORKED WITH COUNTLESS BUSINESSES ON EVEN THE HIRING PROCESS LOOKS DIFFERENT.

BUT I'M EXCITED TO SAY EVEN JUST AN EXAMPLE OF THE BUSINESS HERE IN LOUISVILLE THAT WENT THROUGH THE CERTIFICATION A COUPLE YEARS AGO AND THEY ACTUALLY EMPLOYED AN INDIVIDUAL LAST YEAR.

AND, YOU KNOW, MOM TALKED WITH THE BUSINESS AND SHE ACTUALLY WAS PART OF, YOU KNOW, PART OF THE INTERVIEW.

BUT IT WAS ALL DONE OUTSIDE SO, YOU KNOW, HER SON DID NOT FEEL LESS THAN GOING THROUGH THE PROCESS, BUT YOU KNOW, TO REALLY EQUIPPING THESE BUSINESSES.

AND IT'S REALLY TWO FOLD.

SO IT'S FOR THE COMMUNITY TO BE ABLE TO HAVE THESE BUSINESSES WHERE THEY'RE READY TO EMPLOY AND HAVE THAT AWARENESS.

BUT IT'S ALSO FOR ANY BUSINESS OF ANY SIZE, YOU KNOW, WE HAVE SOME BUSINESSES THAT HAVE ONE EMPLOYEE AND SOME THAT HAVE 500 PLUS IS BECAUSE MORE THAN LIKELY WITH THE NUMBERS, YOU ARE GOING TO NOT ONLY BE INTERACTING WITH INDIVIDUALS THAT ARE ON THE SPECTRUM, BUT COULD VERY WELL BE WORKING WITH SOMEONE.

>> THAT'S RIGHT.

IT'S SO IMPORTANT TO EDUCATE ALL OF US ON WHAT IT IS AND WHAT IT ISN'T.

THERE IS A GREAT QUOTE IN THE DISABILITY COMMUNITY: NOTHING ABOUT US WITHOUT US.

NO ONE KNOWS WHAT IT IS LIKE TO LIVE AS A PERSON WITH AUTISM BETTER THAN A PERSON WITH AUTISM SO I HAD THE CHA TONS SIT DOWN WITH CODY CLARK, A LOUISVILLE MAN LIVING WITH AUTISM AND HAS MADE IT HIS LIFE'S WORK TO HELP PEOPLE UNDERSTAND EXACTLY WHAT IT ITSELF LIKE WITH A TRAVELING MAGIC SHOW.

>> MY PARENTS WERE TOLD WOULD I NEVER WALK, TALK, GET MARRIED, HAVE CHILDREN, HOLD DOWN A JOB AND WHILE THEY WERE WORRIED, THEY DID IMMEDIATELY PUT ME INTO THERAPY AT THE U OF L AUTISM CENTER.

THEY DID A GOOD JOB OF ACCEPTING IT WHILE MAKING SURE I WAS IN A GOOD POSITION TO IMPROVE IN THE AREAS WHERE I GENUINELY WANTED TO IMPROVE.

>> AND THAT PARENT ADVOCACY IS SO IMPORTANT.

AND SELF-ADVOCACY, WHICH IS WHAT YOU DO NOW.

INTRODUCING PEOPLE AROUND THE CITY AND STATE TO PEOPLE.

HOW DID YOU END UP THERE DOING THAT?

>> WELL, SELF-ADVOCACY FOR THE LONGEST TIME, I DIDN'T WANT TO MENTION MY AUTISM IN MY ACT OR IN MY PERSONAL LIFE BECAUSE A LOT OF PEOPLE ON THE AUTISM SPECTRUM DO WHAT IS CALLED MASKING.

ESSENTIALLY, IF WE CAN HOLD CONVERSATIONS, HOLD DOWN JOBS AND DO AT LEAST MOST THINGS DECENTLY WELL, A LOT OF US FEEL MENTIONING IT WOULD CAUSE PEOPLE TO HAVE STEREOTYPES ABOUT US.

BUT WHAT A LOT OF US FIND IS THE QUIRKS COME OUT AND PEOPLE START WONDERING WHAT EXACTLY IS DIFFERENT ABOUT US.

SO I DECIDED, WITH THE HELP OF MY MENTOR RICHARD, WHO IS A FELLOW MAGICIAN I MET WHEN I WAS A THEATER ARTS MINOR AT THE UNIVERSITY OF LOUISVILLE, I EXPERIMENTED WITH JUST ONE ROUTINE ABOUT MY AUTISM, THEN ANOTHER, THEN AN ENTIRE SHOW THAT I STILL TOUR THE COUNTRY WITH AND THAT'S WHEN I REALIZED PEOPLE ACTUALLY ARE NOT GOING TO JUDGE ME FOR KNOWING THAT I'M AUTISTIC BUT THEY'LL ADMIRE ME FOR HAVING THE COURAGE TO MENTION IT.

>> ABSOLUTELY.

AND I KNOW THAT YOU GO TO SCHOOLS AND WHAT DO YOU HEAR FROM KIDS WHEN YOU VISIT SCHOOLS?

>> I SERVE TWO DIFFERENT SUBSETS OF STUDENTS.

FIRST THE GENERAL STUDENT BODY WITH AN AUTISM 101/SOCIAL EMOTIONAL LEARNING SHOW CALLED A DIFFERENT WAY OF THINKING.

AND THEN I'LL GO BACK TO THE SPECIAL EDUCATION CLASSROOMS FOR MY TALKS ON TRANSITIONING TO ADULTHOOD.

FROM THE FIRST SET OF STUDENTS, THE GENERAL STUDENT BODY, I'LL OFTEN HEAR STORIES ABOUT RELATIVES OR PARENTS THAT HAVE AUTISM AND INCREASINGLY I'M SEEING STUDENTS WITH NOISE CANCELING HEADPHONES.

I'M ALWAYS LIKE, I LIKE YOUR HEADPHONES.

THEY FEEL VALIDATED BECAUSE INSTEAD OF MAKING PHONE OF THEIR HEADPHONES, THEY CAN BE PROUD OF IT.

NOW THE STUDENTS ARE LIKE I'M DIFFERENT.

THEY'RE DIFFERENT.

IT'S OKAY.

>> THAT'S RIGHT.

>> AND THE ONES TRANSITIONING TO ADULTHOOD BECAUSE THEY'RE LIKE ME BUT WHEN I WAS THEIR AGE, THEY LOVE HAVING THE HANDS ON STRATEGIES, ACTUALLY BROKEN DOWN FOR THEM BECAUSE IN A TALK I DO CALLED REVEALING THE SECRETS HINDI SENGS SKILLS, A LOT OF PEOPLE JUST ASSUME EVERYBODY IS BORN WITH ADULTHOOD SKILLS.

PEOPLE DON'T THINK TO REALIZE THAT BECAUSE OF THE WAY PEOPLE WITH AUTISM SOCIALIZE OR THE WAY OUR SERVE US SYSTEM IS WIRED, A LOT OF THAT INFORMATION IS NOT AUTOMATICALLY INSTALLED IN OUR HARD DRIVE.

SO A LOT OF THOSE STUDENTS REALLY APPRECIATE THAT SOMEONE IS TAKING THE TIME TO NOT ASSUME, BUT INSTEAD, TEACH.

>> AND EXPLAIN WHAT IT IS.

WHAT DWOW THINK-- WHAT DO YOU THINK IS THE MOST COMMON MISPERCEPTION ABOUT PEOPLE WITH AUTISM?

>> THAT WE ALL END UP BEING ONE TYPE OF PERSON, WHICH IS PRETTY MUCH THE BRAINIAC MATH NERD THAT DOESN'T KNOW HOW TO HOLD A CONVERSATION.

THAT DOES INDEED EXIST, AND THAT IS INDEED VALID BUT THERE IS A LOT OF US WHO ARE INTO THE ARTS, THERE ARE A LOT OF US WHO WANT TO BE PART OF COMMUNITY SERVICE, A LOT OF US WHO WANT TO CHANGE THE WORLD.

JUST THE TWO COMMONALITIES ARE SOCIAL SKILLS DIFFICULTIES AND NEUROLOGICAL WIRING DIFFERENCES THAT LEAD TO SENSORY ISSUES.

BUT OTHER THAN THAT, WE HAVE THE SAME ARRAY OF PERSONALITIES AND LIFE DESIRES AS ANYONE ELSE.

>> AS ANYBODY ELSE, RIGHT?

WHAT DO YOU THINK, FOR YOU, HAS BEEN YOUR BIGGEST CHALLENGE?

WOULD YOU 15 I?

>> MY I GO-- WHAT WOULD YOU SAY.

>> MY BIGGEST CHALLENGE IS A GOOD QUESTION.

BUT THE MOTOR SKILLS HAVE GIVEN ME CHALLENGES WITH DRIVING.

I DIDN'T DRIVE UNTIL I WAS 19.

HANDWRITING, I INSIST ON TYPING EVERYTHING BECAUSE OTHERWISE YOU WOULDN'T BE ABLE TO READ MY HANDWRITING.

AND ALTHOUGH IT IS A GOOD CHALLENGE THAT I LIKE WORKING ON, SOME MAGIC IS HARDER FOR ME BECAUSE IT REQUIRES FINE MOTOR SKILLS.

AND THEN WITH THE SOCIAL SKILLS, THAT CAN BE CHALLENGING OUTSIDE OF THE CONTEXT OF MY BUSINESS SINCE I KNOW BUSINESS CONVERSATIONS ARE ABOUT MY MAGIC.

BUT WHEN I'M TRYING TO MAKE FRIENDS, ALTHOUGH I AM THANKFUL TO HAVE A LOT OF FRIENDS, WHEN I'M TRYING TO DATE, IT CAN BE A STRUGGLE SOMETIMES TO FIGURE OUT WHAT DO PEOPLE TALK ABOUT IN THIS CONTEXT?

>> RIGHT, AND WHAT DO YOU HOPE THAT PEOPLE MAY BE WATCHING THIS WILL UNDERSTAND ABOUT LIVING WITH AUTISM?

>> THAT LIVING WITH AUTISM, THERE IS A REASON IT IS STARTING TO BE THE NEURO-DIVERSITY SYSTEM.

WE ARE A DIFFERENT WIRING SYSTEM.

IT IS NOT THAT WE ARE DOING ANYTHING INNATELY WRONG BUT A LOT OF PEOPLE COMPARE IT TO PCs VERSUS MACS.

BOTH ARE COMPUTERS THAT GET THE JOB DONE BUT NOT THE SAME SOFTWARE SO THERE NEEDS TO BE TRANSLATION IN THE MIDDLE.

WITH TRANSLATION IN THE MIDDLE, NOT JUST FROM US, BUT FROM THE NEURO-TYPICAL POPULATION, THERE CAN BE A LOT OF FRUITFUL RELATIONSHIPS AND A LOT OF FRUITFUL WORKING TOGETHER.

>> I LOVE HOW HE DESCRIBES THAT.

TWO DIFFERENT OPERATING SYSTEMS TRYING TO COMMUNICATE.

SO WE ONLY HAVE A FEW MINUTES LEFT HERE, BUT I WANT TO GIVE YOU A CHANCE TO HAVE ONE LAST COMMENT.

TINA, YOU SAID YOU HAD A COMMENT?

>> YES, SO I WANT TO SPEAK AS A MOTHER.

SO IT'S SO IMPORTANT, LIKE SUSAN SAID, TO FIND YOUR TRIBE.

AND FIND SOMETHING THAT HELPS YOU STAY ANCHORED.

FOR ME, I HAD A TRIBE AND I HAD TWO PASSAGES THAT WERE HANGING IN MY BATHROOM.

AND I READ THEM EVERY DAY.

ONE WAS WELCOME TO HOLLAND BY EMILY PEARL KINGSLY AND THE SECOND WAS CALLED A SPECIAL MOTHER BY EARNA BOMBECK.

AND THE SECOND IS TO ACKNOWLEDGE THAT THERE IS GRIEF IN HAVING A CHILD WITH DIFFERENCES, SO THERE IS A SONG CALLED MISSING PIECES BY MARK LELAND MY SON WAS PROBABLY IN MIDDLE SCHOOL BY THEN.

WHEN I LISTENED TO IT AND I'LL DO THE FIRST TWO LINES.

NOW I LAY HIM DOWN TO SLEEP, PRAY THE LORD MY SON COULD SPEAK.

I LISTEN TO THAT SONG AND I BALLED AS IF SOMEONE HAD JUST DIED.

SO THERE IS A DEEP GRIEF IN HAVING A CHILD WITH A DIFFERENCE.

AND THEN YOU KNOW, YOU WORK THROUGH IT AND THEN YOU DISCOVER YOU ARE IN HOLLAND AND THERE ARE SOME AMAZING PEOPLE AND AMAZING OPPORTUNITIES THAT ARE IN HOLLAND, EVEN THOUGH THAT'S NOT THE PATH THAT YOU INTENDED TO GO DOWN, THAT'S THE PATH YOU ARE ON.

SO TO ALL THE FAMILIES OUT THERE , YOU KNOW, EMBRACE YOUR PATH, FIND YOUR TRIBE AND FIND YOUR ANCHORS.

>> WELL SAID.

SUSAN.

>> YEAH, I WOULD JUST SAY A LARGE TAKEAWAY IS THAT FOR A PARENT, IS THAT YOU ARE NOT ONLY PREPARING YOUR CHILD FOR THE WORLD.

BUT YOU NEED TO PREPARE THE WORLD FOR YOUR CHILD.

BECAUSE YOUR CHILD HAS AMAZING CAPABILITIES AND THEY'RE GOING TO SURPRISE YOU AND EVERYONE ELSE.

SO MAKE SURE THE WORLD IS READY FOR THEM.

>> TANYA.

>> WONDERFUL.

I LOVE HEARING THE PARENT STORIES AND IT JUST SPEAKS TO ME EVERY SINGLE DAY IN THE WORK THAT WE DO AND REACHING OUT TO THE COMMUNITIES ALSO FOR FAMILIES TO REACH OUT AND WORK WITH YOUR SCHOOL SYSTEM.

YOU KNOW, THERE ARE 27, 28 NATIONALLY RECOGNIZED EVIDENCE-BASED PRACTICES THAT CAN MAKE THE WORLD OF DIFFERENCE.

AND I THINK IN KENTUCKY, WE'VE REALLY, REALLY WORKED HARD TO PROMOTE TEACHER TRAINING AND EDUCATION IN THAT AREA TO HELP OUR STUDENTS.

>> SCOTT, JUST ABOUT 10 SECONDS.

>> YEAH, IF THE LAST 25 YEARS OR SO, WE HAVE MADE REMARKABLE PROGRESS IN THE STATE IN CREATING ALL THE SERVICES THAT ARE AVAILABLE AND I ENCOURAGE PARENTS TO REACH OUT AND JUST TO ACCESS EVERY SERVICE AVAILABLE.

YOU CAN MAKE A DIFFERENCE.

>> THAT'S RIGHT.

THOSE RESOURCES ARE AVAILABLE.

WE'VE LISTED A LOT OF THOSE ON OUR WEBSITE ket.org/AUTISM.

WE WILL LEAVE YOU TONIGHT WITH SOME MAGIC FROM CODY CLARK.

HAVE A GREAT NIGHT.

>> PEOPLE'S FIRST THOUGHTS ON AUTISM, AS WE ARE DISCUSSING IN THIS SERIES ARE A BIT TOO BLACK AND WHITE FOR KENTUCKIANS TASTE.

PEOPLE THINK WE ARE EITHER GENIUSES OR FAILURES.

PEOPLE THINK WE ARE NON-VERBAL OR WALKING DICTIONARIES WHO WON'T SHUT UP.

PEOPLE THINK WE ARE COLD AND UNEMOTIONAL OR HAVING MELT DOWNS AT WAL-MART.

NOT MUCH IN BETWEEN.

ONLY BLACK AND WHITE.

UNTIL WE KENTUCKIANS HAVE A DIFFERENT WAY OF THINKING ABOUT AUTISM, THEN WE WILL SEE THAT IT'S REALLY A MAGICAL COLORFUL AND QUITE DIVERSE SPECTRUM FULL OF SOME OF THE BEST KENTUCKIANS YOU WILL EVER MEET!

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