“CATCH-22: AUTISM IN ADULTHOOD” SCRIPT

NAT SOUND OF “HAPPY BIRTHDAY”FADE UP TO FOOTAGE OF AJ LOPEZ 5th BIRTHDAY

FADE TO BLACKNAT SND “HAPPY BIRTHDAY”FOOTAGE OF AJ’S 22 BIRTHDAY

INTRO/TITLES with graphics

BROLL AJ’S MOM

CG: Josie Ramos – AJ’s motherPICTURE OF AJ AND NICOLE AS CHILDREN

VO: IT’S 1997 AND AJ LOPEZ IS TURNING 5(?) YEARS OLD. IT’S A DAY OF CELEBRATION FOR THE LOPEZ FAMILY. BUT WHAT LIES AHEAD FOR AJ IS NOT ALL AS JOYFUL.

VO: SEVENTEEN YEARS LATER, AJ IS TURNING 22. BUT THIS TIME, THE CELEBRATION IS BITTERSWEET. AJ HAS AUTISM.  AND THIS YEAR, HE WILL LOSE MANY OF THE GOVERNMENT BENEFITS HE’S ENJOYED FOR HIS ENTIRE LIFE. MOST IMPORTANTLY: HIS RIGHT TO ATTEND PUBLIC SCHOOL.

AJ IS NOT THE FIRST OR THE ONLY AUTISTIC ADULT TO FACE THIS CHALLENGE. HE IS JUST PART OF A GROUP THAT IS OFTEN FORGOTTEN ONCE THEY REACH A CERTAIN MILESTONE…

THE CATCH 22.

VO: AJ’s MOTHER JOSIE RAMOS IS A PSYCHIATRIST IN THE MIAMI AREA--SHE SEES AUTISM IN HER LINE OF WORK. BUT HER OWN SON’S DIAGNOSIS STILL CAUGHT HER OFF GUARD.

Josie:“And I’m like, ok, well now what do I do? So um…by that time he was having all the classic symptoms. He was also, he was making sounds but not clearly verbalizing, he was very hyper… there’s pictures, I laugh now but (2:39)”“taking pictures of him on a birthday, I showed Nikki recently--- Nicole, my daughter --- notice this picture, in one he’s there, we just put him in his chair and then within seconds he’s gone under the table so

GRAPHIC OF BRAIN

BROLL AJ AS CHILD

BROLL ENDSTIGHT SHOT JOSIE

BROLL THOMAS AND MARIEPICTURE OF THOMAS

CG: Thomas and Marie Whitehurst – Thomas’s parents

in the picture he is not there. So you see Nicole with him and then Nicole without him.”

AUTISM AFFECTS THREE KEY PARTS OF THE BRAIN--THE CORPUS CALLOSUM WHICH CONTROLS COMMUNICATION, THECEREBELLUM- THE BODY'S CENTER FOR COORDINATION---ANDAMYGDALA WHICH REGULATES SOCIAL BEHAVIOR. EVEN SOMETHING LIKE SAYING A SINGLE WORD CAN BE A CHALLENGE FOR AJ.

Josie: (7:02) “The first time he said a clear word, he was at a small classroom in The Learning Center, and they called me immediately, they couldn’t believe he said it clearly, and it was a part of the daily alphabet, it was the word “A – apple.” So they told me, “You have to come over here, you have to see this.” What they were really surprised about, then, not only was he… believe me he was nonverbal, you knew this was within him this whole time but it was like finally, the connection of being able to say a word.”

Josie: What was amazing to me was when he was able to name the names…and I was just flabbergasted. I could even cry now, that he knew that name of every little kid there. (7:56) And that’s how he is, he knows everybody’s names…right AJ?AJ: Yes.

VO: THOMAS AND MARIE WHITEHURST ARE ALSO PARENTS OF AN AUTISTIC ADULT.THEIR SON THOMAS IS JUST A FEW MONTHS OLDER THAN AJ.

Marie: Thomas, when he was younger though the kinds of difficulties that he had were like taking him out to restaurants, going out to movies and things. He would start getting, you know, very anxious and agitated

GRAPHIC

so we always had to leave those places we were, so you never really knew how he was going to react, it was very

Tom: --unpredictable

Marie: Yes, unpredictable.

VO: LIKE AJ, THOMAS’S BIGGEST CHALLENGE IS WITH SPEECH.

Tom: He doesn’t have much pro-active speech. He has reactive speech and at times he has bursts-we were just visiting a school the other day and they said one day he all of a sudden started chatting up a storm not reactively but proactively. We don’t see it very often but he does have the ability. It’s also difficult because he has something called apraxia which makes it hard for him to combine certain letters, and umm, the other thing that’s a challenge is it’s hard to find out what he wants to do, you know even if it’s “Thomas, do you want vanilla ice cream or a chocolate chip cookie?” And we know there’ something he wants but until you start actually giving him the wrong one he won’t say a word. He just, he won’t make the selection himself. But that’s, we can work around cuz we kind of know what he wants but 40 years from now we don’t know if there will be someone around to predict his needs and wants.

VO: THOMAS AND AJ ARE PART OF THE LARGEST GENERATION OF AUTISTIC ADULTS IN HISTORY. AND THAT NUMBER CONTINUES TO GROW. [[GRAPHIC]] IN 2000, 1 IN 1000 CHILDREN WERE DIAGNOSED WITH AUTISM. TODAY, THAT NUMBER IS CLOSER TO 1 IN 68.WITHIN THE NEXT 10 YEARS, 500,000 CHILDREN WITH AUTISM WILL BECOME ADULTS.

Tom: 32:43You don't want them at home until you drop dead, and then all of sudden your kid is in

GRAPHIC

BROLL DC CAPITOL

BROLL AJ KINDERGARTEN

FADE TO BLACK

TEXT on black: “Catch-22 (noun): a difficult situation for which there is no easy or possible solution”

BROLL AJ

this house and at 45 years old has to make this transition. So, we need to start to transition as quickly as possible…Tom: 31:15  When we're not here anymore, and his disability is no restriction on life expectancy, he could live to 100, and who is gonna be around then?

VO: THESE FAMILIES ARE ONLY A FEW OUT OF THE MILLIONS AFFECTED BY THIS DISORDER. AUTISM IS THE FASTEST-GROWING SERIOUS DEVELOPMENTAL DISABILITY IN THE U.S. AT LEAST 1.5 MILLION AMERICANS ARE CURRENTLY AFFECTED BY AUTISM. THAT’S TRIPLE THE POPULATION OF THE STATE OF WYOMING.

THE UNITED STATES FEDERAL GOVERNMENT ESTABLISHED A PROGRAM KNOWN AS INDIVIDUALS WITH DISABILITIES EDUCATION ACT, WHICH REQUIRES SCHOOLS TO PROVIDE PROGRAMS FOR ELIGIBLE STUDENTS WITH DISABILITIES...UP UNTIL THE AGE OF 22.

Marie: But at 22, everything stops. And that's you know, that's the scary part because you really have limited options. Very, very limited options.

Josie: About him turning 22… it’s major. I actually feel how I felt when he was 22 months and almost 3 and I was looking for a place for him, and I feel like I’m back to that same place, like, “Now what?”

VO: IT’S A QUESTION THAT EVERY PARENT OF AN AUTISTIC ADULT MUST ASK.

BROLL SCOTT AND MICHELLE

CG: Michelle Rubin – Founder of Autism After 21

BROLL AUTISM AFTER 21 PHOTOS

AT 22, AJ CAN NO LONGER STAY IN THE MIAMI-DADE PUBLIC SCHOOL SYSTEM. NOW, RAMOS HAS TO MAKE A TOUGH DECISION. PAY TENS OF THOUSANDS OF DOLLARS A YEAR FOR PRIVATE EDUCATION OR PUT AJ ON A WAITLIST FOR FEDERALLY SUBSIDIZED PROGRAMS. A WAITLIST HE MAY NEVER GET OFF.

VO: MICHELLE RUBIN’S SON SCOTT SPENT 12 YEARS ON ONE OF THESE WAITLISTS, HOPING FOR A MEDICAID WAIVER. THE WAITLIST SCOTT WAS ON HAS SINCE BEEN CLOSED DUE TO BUDGET CUTS, LEAVING THOUSANDS OF FLORIDIANS WITHOUT ACCESS TO SERVICES.

MICHELLE RUBIN: …and while... the legislature has slowly been releasing more funds as theeconomy in Florida has improved, the back-lag of people is so long (that)…some people will probably never get it…

VO: SO RUBIN DECIDED TO TAKE MATTERS INTO HER OWN HANDS. IN 2011, SHE FOUNDED AUTISM AFTER 21--AN ORGANIZATION THAT FOCUSES ON TRANSITIONING AUTISTIC ADULTS INTO THE WORKFORCE.

Michelle: Autism After 21 was founded about 3 years ago, and it really was born out of my desperation that Scott was getting older, and I started looking around at what was going to happen when he left the school system, and I realized that there really wasn’t going to be a lot for him to do, and he was going to lose most of the supports he had been getting during all his years at school. So, at the urging of some friends, who I think quite frankly got sick of me complain about this, said “Well, why don’t you just do something?” So I said, “Alright, well, if you gals will help me, then we’re gonna do it!” So that’s how we decided to start Autism

NAT SOUND BREAK EASTER SEALSBROLL EASTER SEALS

PICTURES OF THOMAS AT EASTER SEALS

BROLL EASTER SEALS

BROLL OF RISING TIDES

After 21.

VO: RUBIN’S ORGANIZATION SEEKS OUT BUSINESSES IN THE COMMUNITY TO PROVIDE JOB TRAINING FOR AUTISTIC ADULTS LIKE SCOTT FREE OF CHARGE. IN SOME CASES, THE TRAINING PERIODS CAN LEAD TO PERMANENT EMPLOYMENT.

OTHER ORGANIZATIONS HAVE DECIDED TO HANDLE THE JOB TRAINING THEMSELVES. EASTER SEALS IS A SCHOOL THAT EDUCATES SPECIAL NEEDS CHILDREN FROM BIRTH UNTIL AGE 22. THE HIGH SCHOOL CURRICULUM OFFERS A CULINARY PROGRAM THAT TEACHES SKILLS TO MAKE THEIR GRADUATES EMPLOYABLE AS CHEF AIDES. THOMAS WHITEHURST WAS ONE OF THE PARTICIPANTS.

Marie: 9:08 Probably where he learned the most practical skills was in this culinary program because that was definitely geared to that specific activity...Then they came out with a certificate which is you know a wonderful thing because it’s not just a special ed certificate, it’s a certificate that says that Thomas can be a chef aid which is frankly, that’s that’s, now we just have to find him a job, but having that type of certification is a wonderful thing, that program is very helpful.

THE GOAL OF THESE JOB TRAINING PROGRAMS IS TO EQUIP AUTISTIC ADULTS WITH THE SKILLS TO LAND A JOB.

RISING TIDE CAR WASH IS ONE OF THE BUSINESSES HIRING. TOM D’ERIE FOUNDED THE SMALL CARWASH IN PARKLAND, FLORIDA AFTER HE WAS INSPIRED BY HIS AUTISTIC BROTHER

CG: Tom D’Eri – Rising Tide Founder

BROLL ERIC JAWITZBROLL PUBLIC TRANSPORTATIONPHOTO LOEWS

ANDREW. D’ERIE SAYS HE WANTS TO PROVE HIRING AUTISTIC ADULTS CAN BE GOOD FOR BUSINESS. D’ERIE SAYS HE WAS DISAPPOINTED BY THE LACK OF OPPORTUNITIES FOR HIS YOUNGER BROTHER. SO HE DECIDED TO SOMETHING ABOUT IT.

TOM (Rising Tides): (7:56) We did a lot of research around why there is so much unemployment for people with Autism, and it turns out there is 80-90% unemployment among this group, so we did some deep dives doing research around what were the causes of that. What we essentially found was um, there’s 2 key reasons: One is that we as a society really view autism as a disability that requires sympathy instead of a really potentially valuable diversity, and maybe even a potential advantage for business. And second is that, um, there’s no um, strategic reason across the business community as to why a business would step out of their comfort zone and hire someone with this diversity. And so what we wanted to be able to do is not only show and really educate communities around how people with Autism really work, but also create a really clear business case as to why a company should go and try to employ someone with Autism.

VO: IN JUST OVER 18 MONTHS SINCE RISING TIDES OPENED ITS DOORS, THE SMALL BUSINESS HAS TAKEN OFF.

Tom: We have folks come in all the time looking to pass out flyers to friends their family, like oh my girlfriend has a son with Autism or something like that, so, we’ve

BROLL RISING TIDES

NAT SOUND BREAKBROLL ERIC JAWITZ

BROLL ERIC AND KARIN

BROLL MIAMI METRO

PHOTO ERIC AT WORK

CG: ERIC JAWITZ – 27 YEARS OLD

BROLL KARIN

CG: KARIN JAWITZ- MOTHER OF ERIC

done really well in customer service. And the way that they’ve embraced us has really helped drive our business. We’ve got a great customer base, and I mean you talk to our customers, most of them still come because its’ a really good quality service at a reasonable price, but there’s a large contingent of customers that would never dream of going to another car wash because they really identify with our mission

VO: FOR ANDREW, RISING TIDES HAS BECOME A PLACE TO CALL HOME.

Andrew D’Erie: My job responsibilities are to roll up the vacuums whenever there is no cars, and to clean the lobby.I like working here, a lot!

Tom: So that’s what we wanted to continue to do here. We wanted to create a really tight-knit community where if something were to happen to one of our families we’d be there really to help them through it.

VO: OTHER AUTISTIC ADULTS LIKE ERIC JAWITZ HAVE FOUND JOBS WORKING ALONG SIDE PEOPLE WITHOUT DISABILITIES.

AT AGE 27, STILL LIVES WITH HIS PARENTS. BUT EVERY DAY, ERIC TAKES PUBLIC TRANSPORTATION TO HIS JOB AT THE LOEW’S MIAMI BEACH HOTEL, WHERE HE WORKS AS A POOL ATTENDANT. ERIC IS THE HOTEL’S ONLY AUTISTIC EMPLOYEE, BUT HE DOESN’T LET HIS DISABILITY STAND IN THE WAY OF HIS WORK.

Eric Jawitz: There’s no--I’m the only one. But I don’t tell my coworkers that. Cause it’s private. I don’t want them to be like “why are you here? you have a disability” ...it’s like “I don’t have one” … I pretend I don’t have it, you know? Even if I was in the dressing room changing, I don’t tell them about it,

BROLL AJ

BROLL UMCARD

cause I don’t want people to get mad, you know?

VO: HIS MOTHER KARIN SAYS SHE WAS INITIALLY UNSURE IF EMPLOYMENT WAS EVEN THE RIGHT OPTION FOR HER SON.

Karin Jawitz (Eric’s Mom):  And then an opportunity came up and the job coach heard about a job fair at the City of Miami Beach, and we were like, “What is he possibly gonna do there? And how is he gonna get there?” But then it was, just go ahead and take him, because it’s like an outing for him for the day, it’s something to do, and he went and interviewed and the next day he got a callback. And that was almost 4 years ago, he’s won employee of the month, he’s won all these awards, he loves his job, he’s a great employee, and they’re really happy with him.

Eric: I like helping people out, you know. I like when guests will sometimes give me tips, you know, which I don’t expect. I don’t think about it. I just think about there personalities really. And sometimes guests give me handshakes too. Like I say like “I’m Eric” and they give whoever there is. And I still kinda care because they’re nice. I even get guest comments sometimes. I get emails back from the hotel that they got a few guest comments about me.

BUT WHILE EMPLOYMENT MAY WORK WELL FOR ERIC, HAVING A JOB JUST ISN’T AN OPTION FOR MANY LOWER FUNCTIONING ADULTS LIKE AJ.

Josie: And the truth is, my son, unfortunately, does need supervision. You know, I could not conceive of him just being totally, “Ok, let’s put him in this kitchen cafeteria and have somebody tell him, ‘Oh, go get this.’” You know, he may be able to go get that thing, but then he may not know

BROLL DR. ALESSANDRI

CG: Dr. Michael Alessandri – Executive Director UM Center for Autism and Related Disabilities

what to do with it after.

VO: BUT LUCKILY FOR AJ, THERE ARE STILL SOME OPTIONS AVAILABLE. THE UNIVERSITY OF MIAMI CENTER FOR AUTISM AND RELATED DISABILITIES--COMMONLY KNOWN AS UM CARD--IS ONE OF SEVEN UNIVERSITY BASED CENTERS FUNDED BY THE FLORIDA LEGISLATURE TO HELP PEOPLE WITH AUTISM FOR THE ENTIRETY OF THEIR LIVES. THE CENTER SERVES 8300 FAMILIES ACROSS SOUTH FLORIDA. DR. MICHAEL ALESSANDRI IS THE EXECUTIVE DIRECTOR.

Alessandri: I think the most important thing to remember about autism is that it's a remarkably vast spectrum So you have every possible combination of ability and disability in the autism spectrum and I think the most important to think about when you're trying to create a meaningful and viable life for someone after school is you have to think about meeting their needs on an individual basis...For some individuals it's going to be post-secondary education because they're on an educational track, for other individuals it's about creating a work environment that can sustain them in terms of viable work for a lifetime. And in other cases, it's some combination. Maybe some of our adults aren't really able to work full-time but maybe they can volunteer part-time, maybe they can work part-time, and maybe they can do some education as well. You just have to be very open minded about trying to cobble together a life for someone that is based on their individual needs and not try to predict or fit everyone into the same type of program. They really do need individualization...Their interests are different, their needs are different, and as a result the services and systems that support

FADE TO BLACK

PHOTOS AJ AND THOMASPHOTOS AJ AND JOSIE

BROLL TIME-LAPSE BUILDING A RESIDENTIAL LIVING CENTER FOR AUTISM

them need to be different.

VO: AJ IS LUCKY. HE’S BEEN RECEIVING SUPPORT AND TREATMENT FROM THE CARD CENTER FOR MOST OF HIS LIFE. MANY OTHERS IN SOUTH FLORIDA ARE NOT AS FORTUNATE.

Alessandri: It’s still far less than are out there—if you look at the prevalence rate for autism which are pretty astounding, you expect about 50,000 people in South Florida to have autism and we’re only reaching about 8,000. So there are reason that maybe they haven’t found us yet. Maybe they don’t know they have autism or maybe they have another diagnosis, they're late in getting a diagnosis. There are many barriers in diagnosis and treatment. So it's possible that there are many more people out there that we still have to find.

VO: TREATMENT FOR AUTISM HAS MADE MASSIVE STRIDES SINCE AJ AND THOMAS WERE FIRST BORN. BUT AUTISTIC PARENTS STILL HAVE TO FACE AN UGLY TRUTH. WHILE THE DISORDER HAS MAJOR EFFECTS ON THE BRAIN, AUTISM HAS NO IMPACT ON LIFE EXPECTANCY. WHICH MEANS THAT MOST AUTISTIC ADULTS WILL OUTLIVE THEIR PARENTS.

Josie: Yes of course, that’s the thing parents--- you know there are things that we never wanna talk about, thing such as dying, and then what happens to your child. Any parent, that has to cross your mind. Especially when you have a disabled child, absolutely. And especially when you have another child, you don’t want to leave that responsibility completely to them….

VO: FOR MANY PARENTS THE SOLUTION TO THIS PROBLEM WILL

NAT SOUND BREAKBROLL CAPITOL TALLAHASSEE

COME IN THE FORM OF ADULT RESIDENTIAL COMMUNITIES.

Whitehurst (16:47) We’re in a situation where we could afford to set something up with like a group home or a home permanently and have someone living with Thomas but it wouldn't expand his horizons and it wouldn't solve the rest of the community's problems. So we'd like to create a community, a larger community, like a college campus setting almost, where the kids could live there in a somewhat protected environment.

Josie 22:50…a concept of like a village, a village, you know like you see a retirement village, where you have different levels of care and attention. Some need constant supervision, but there would be some sort of center like they do with the elderly, some daily treatment centers, they get music therapy, they get someone to do exercise, so something like that outside of Dade County, (28:33) there are places that are in development right now that seem to be starting, looking at adults with Autism, and maybe starting day-treatment centers but certainly that’s not happening here.

Whitehurst 28:11…there's not necessarily some person who is creating some obstacle, it's more a function of the system isn't really quite ready for these adults when they turn 22. So that's the challenge; is to be able to change that, and that's what we're trying to do in our own way.

Tom D’Erie: Well, I think it’s that you can’t rely on the government to address this issue because simply it’s too hard to do. The processes that the government uses, vocational rehabilitation uses to find employment opportunities for people with autism are just not efficient enough to kind of take on that volume, which is evident.

VO: IN THE MEANTIME, IT’S

BROLL RISING TIDE CAR WASH

BROLL SLOW-MO MONTAGE OF

EVERYDAY HEROES LIKE TOM D’ERIE WHO ARE ANSWERING THE CALL TO HELP THESE ADULTS TRANSITION INTO ADULTHOOD.

VO: WITHOUT GOVERNMENT-SPONSORED PROGRAMS, THE RESPONSIBILITY OF HELPING THESE ADULTS TRANSITION INTO ADULTHOOD IS LEFT TO EVERYDAY HEROES LIKE TOM D’ERIE

Tom: We’re teaching our guys independent living skills like how to take public transport, or how to manage their money, we probably at some point want to teach them how to live independently, how to pay rent, and stuff like that, cook, and clean, and be safe living on their own without a parent or guardian.So, we need alternatives and what our goal is, and what excites me about this, is that this is—if we can convince the business community um, that it’s a competitive advantage to employ people with autism we can actually solve this problem.

VO: FOR OTHERS LIKE AJ AND THOMAS, EDUCATION WILL BE THE SOLUTION.

Josie: He loves words…you like reading AJ?AJ: Yes.Josie: You  like math?AJ: YesJosie: No you don’t, he’s not being truthful. Math, he does not like. But there are other things he does like, and just continuing to be together with others, you know, instead of being alone and isolated and being at home, and maybe bringing in, you know, tutors and stuff, which I guess I could always but it’s not the same, to be in a setting where he is

SUBJECTS

FADE TO BLACKCREDITS

involved with others.

Marie: …I would just say that, it really does get better. It really really does. And never give up on your child, that's the most important thing. You can make such a difference in your child's life and just to stay informed, stay on top of what's going on in the world of Autism. Education is very important.

Alessandri: It’s like a daily Rubix cube that you’re trying to figure out. And every one is different for each kid that you interact with.

VO: WE OFTEN THINK OF AUTISM AS A DISABILITY. A SETBACK IN DEVELOPMENT OR A CAUSE FOR SYMPATHY. BUT WE FAIL TO REALIZE THE UNIQUE ADVANTAGES AND THE VARIETY TALENTS THAT COME WITH AUTISM.

FROM AJ LOPEZ TO THOMAS WHITEHURST. FROM ANDREW D’ERIE TO ERIC JAWITZ, EACH AUTISTIC ADULT IS LIKE A PUZZLE PIECE. UNIQUE IN THEIR CURVES AND EDGES. THE PIECES MAY LOOK DIFFERENT FROM WHAT WE’RE USED TO. BUT WITHOUT THEM THE PUZZLE IS INCOMPLETE.

THE CHALLENGES THAT THESE AUTISTIC ADULTS WILL FACE ARE GREAT AND THE CHANGES THEY ARE HOPING FOR IN GOVERNMENT AND PUBLIC PERCEPTION WILL BE GRADUAL. BUT DESPITE ALL OF THE ADVERSITY THAT COMES WITH AUTISM, THEIR FAMILIES STILL CONSIDER THEMSELVES LUCKY.

Tom: I heard a story one time that I think describes it well: A couple had been saving up for a couple years and planning a trip to

London... So they're flying over on the Red-eye and right before they land the pilot says, "We're not going to be able to land in London because there's bad weather, we're going to have to land in Paris, but maybe you can catch a flight later."…They were really disappointed because they had been planning for 2 years for this trip, they had their guidebooks they had everything mapped out, and then they woke up the second day and said, "Wait a second, we're in Paris!" And by the end of the trip, they were like why did we ever want to go to London? So that's how it is with Thomas. He's our Paris.