- [Narrator] Funding for "Autism Aging Out" is made possible by Highmark Blue Cross Blue Shield.

(gentle music) - There is a very famous saying in the autism community.

- Everyone will always tell you... - If you know one person with autism... - If you've met one person with autism... - You've met one person with autism.

- And that's a fact.

- You go, Jenn.

(people chattering) - It's a spectrum.

There's a wide range there.

- [Narrator] Each person with autism spectrum disorder is unique and so are their needs, but when a person with autism turns 21... - All your school services are stopping at age 21.

- [Narrator] And the path to setting up new services could be an uphill climb.

- There you go.

- And the adult world is not a system built for people to come to your door and say hi, I'm here ready to serve you.

You have to fight for the services for your child.

- [Narrator] Transitioning from school services to the adult world is called aging out.

- There's this cliff.

No one hands you an instruction book.

- What I've seen in some circumstances is families are working really hard taking care of somebody and they need support.

- [Caretaker] You did great today!

- [Narrator] Discover what it takes to navigate a complex system to secure services for adults with autism and find out who faces additional barriers along the way.

- I didn't want families to go through what I went through.

- I would change that it wouldn't be such a fight for parents to get the resources they need for their adult with autism and people need to hear that again and again, that given the right resources and everything, things can turn out really great for them.

(suspenseful music) (electronic bell ringing) - What makes me a good employee is that I work independent, I do things.

Corene does a checklist for me, so that I know what to do.

(gentle music) - [Narrator] 25-year-old Maddie Ashton works in the cafeteria at Strath Haven Middle School in suburban Philadelphia.

Corene Contreni is her job coach.

- Yeah, it works much better.

- I usually get the cookies out of the fridge and then, I pan them up.

(gentle music continues) - Brr.

Nice job, Maddie.

- I get to serve pretzels to the kids, 'cause they really like them.

(people chattering loudly) (gentle music continues) - [Student] Thank you.

- Sometimes, Ron gives me high fives or fist bumps whenever I do a good job.

- All right, ready?

- Yeah.

- My goal has always been for Maddie to be a tax paying citizen.

To not spend all those years of public education, 12 plus years, and have it go to waste and have her sit at home on my couch.

I wanted her to go out in the work world and feel good about herself, 'cause I think work makes people feel good.

- [Narrator] Young adults with autism have the lowest rates of employment among people with disabilities.

- [Corene] Got the door okay?

Okay.

- But employment outcomes and incomes improve dramatically when the autistic person receives job coaching and support.

- And people need to hear that again and again, that people, when they're given jobs and job supports and transportation and resources and skill sets, they turn out to be productive individuals just like everyone else.

- [Narrator] The path that led Maddie to this job started more than a decade ago when her mother began talking to support teams at school about transitioning Maddie into the work world after graduation.

- The kind term is aging out of the school system and the true term is falling off a cliff to parents, because literally, you can either jump or you're pushed and there's either two ways to go about it and jumping, you can prepare yourself for jumping off the cliff and have your parachute ready and have a great place to land or you can push and just fall.

While we were looking for jobs, we looked at things that she liked to do.

Maddie loves to organize.

She loves to stay busy.

She likes to be on her feet moving.

She loves to do something again and again and again and again.

(gentle music continues) So, we look for situations like that.

- [Narrator] Penny eventually connected with a Philadelphia nonprofit called Community Integrated Services.

- Excellent.

Nice job, Maddie.

That was pretty fast today.

- And their slogan is employment for everyone and that is what I truly believe, that everyone can work.

- [Narrator] Job coaches escorted Maddie to workplaces where she could sample different jobs.

- Once it's off the paper, you can use your fingers if you need to.

Okay?

- It's just like flipping a pancake.

- Right?

It is.

- [Narrator] Maddie has been in this job for more than a year.

- She's been working so much more independently that she really needs hardly any prompting.

- Community Integrated Services really opened up this whole world of employment for her, because what I can't do is replicate a work environment here at home.

So, all the things people learn at work, how to be part of a team how to do things on your own and report back to a boss, how to take direction from a boss.

All those skills that all of us learn how to do at work.

- Thought maybe I'll take them out.

(people laughing) - She's doing really well.

Her great support team here, all her coworkers, if it wasn't for them, I don't think she'd be doing as good as she's doing.

They are just so supportive.

They're so helpful and she's doing awesome.

It's really good to see.

- And often, in the world of disability, there's a saying, food, flowers, or filth.

You can work with food, you can work with flowers, or you can work cleaning something.

There's certain categories that we think of that are worthy of people with disabilities working in those areas.

- [Narrator] But workforce experts suggest people with autism and other disabilities are an untapped pool of talent and could work in a wide range of industries if only more employers gave them the chance.

- Everyone on this earth, no matter how disabled a person is, they wanna feel valued and seen worthy and I think work makes you worthy and it makes you feel seen and I think everyone wants to be seen.

- [Maddie] I'm the cookie girl.

- [Corene] You are the cookie girl.

(laughs) - Feeling proud of myself means I know what I'm doing and doing the right job for me.

(gentle upbeat music) - First of all, there's nothing wrong with Kellen.

Autism just means that the individual thinks differently than a neurotypical person.

That doesn't mean there's anything wrong with them.

- [Narrator] 35-year old Kellen Brookins has multiple diagnoses including autism.

He receives an assortment of services and support and they're paid for by the state.

- [Instructor] And it's time for exercise.

Let's go.

- So, considering what our life would look like without services actually gives me chills, because I know a lot of families that don't have that.

- [Narrator] Public schools are required by law to provide services for students with disabilities until age 21.

After that, services stop.

It's referred to as aging out.

(people chattering) Aging out means navigating a new and complex path to qualify for services as an adult.

- When they are getting ready to transition out of the school environment, there's this cliff.

So, we already had supports in place before he would've transitioned out of school.

- [Narrator] The supports are available through the Medicaid Home and Community Based Services Waiver Program.

- And the waiver is what provides the funding for services, so that the individual can remain in the home and the community.

- [Narrator] The waiver program started in 1991.

It's a way to avoid placing the person in a state institution, care that Medicaid would have to pay for.

Under this program, the person waives their right to institutional care, a combination of state and federal dollars fund services for home and community living instead.

(people chattering) - All right, gentlemen.

Here we go.

We're about to make magic.

Check out what I just did.

- It's not about parents and what the household needs.

It's about the individual.

In our case, what did Kellen need?

- Beautiful.

Beautiful.

- [Narrator] When Kellen's day program ends at 3:00, an aide escorts him to more activities before he heads home for dinner.

- What kinda car is that?

- And they may go shopping and they may go for a walk in the park and they may go see museums or any other activities, but the whole point is inclusion in the community and that he learns to function in the community and the community learns to accept him for who he is.

- School support teams are required to start talking about aging out transition plans when the child with a disability turns 14.

- Mom's gonna meet us, pick you up and take you to the Special Olympics tonight.

- [Narrator] But anything from a late diagnosis to health and social inequities could derail that eventual transition when the child turns 21.

- How you doing, Kellen?

Good.

Did you have a good day with Quincy?

- [Kellen] Quincy.

With you.

- What did you do today?

- Walking, walking.

Walking.

I bet you did.

Did you see any... - Without assistance, few families could shoulder all of the burdens of caring for their adult child with disabilities.

- Mom's car?

Let's go put it in the car.

Come on.

Which one's mom's car?

- Disease burden is a complicated term.

It's not just the immediate symptoms that affect the patient.

It's how it affects everybody else around them.

- [Narrator] Disease burden for autism includes everything from the expense of medical services to a family member's lost income if they miss work to care for their loved one.

These costs to society are predicted to exceed $461 billion by 2025.

- And now, you'll see some statistics.

The CDC says in the United States, it's one in 44 kids has been diagnosed with autism.

- [Narrator] That's one in 44 children with communication, sensory, and behavioral impairments that continue into adulthood.

(gentle music) (people chattering) - Concisely, we don't know what causes autism.

We don't know what the problem is in the brain.

(people chattering) - Hi.

Some hot tea.

- In general, we think of it as a connectivity problem, but the brain is a wondrously complex organ and when we talk about connections, we're talking about trillions of connections.

(piano key dings) - [Narrator] There is no physical or medical test to diagnose autism spectrum disorder.

- Five plus 10 equals... - [Narrator] Doctors assess a person's developmental history and behaviors, but even that presents challenges.

- It varies from kid to kid or person to person in terms of what might be going on and that's why you see a wide spectrum of problems.

- [Narrator] Because it is a wide spectrum of problems, people with autism face a wide spectrum of needs.

- Our society takes advantage of parents who are committed to taking care of their kids.

They love their kids.

They don't want them in an institution.

What I've seen in some circumstances is families are working really hard taking care of somebody and I think many families don't have that financial wherewithal and they need support and the wait list for a placement or a wait list for additional services is so long and they need help right now.

- [Narrator] A wait list for services.

Waivers are allocated in slots, not dollar amounts, and the state only issues a limited number of slots each year.

So, even though individuals qualify for services, they may end up on a waiting list to receive them.

- There's a waiting list, because there's just not enough funding right now in the system.

It comes down to dollars and cents.

- [Narrator] In addition to serving as president of the ARC of Greater Pittsburgh Achieva, Nancy Murray is part of a non-profit advocacy group called the Pennsylvania Waiting List Campaign.

- And as of this moment, there's still about 12,000 people with intellectual disabilities and autism on our waiting list for services.

- [Narrator] Those 12,000 people on the waiting list are divided into three groups.

Those needing services within five years, two years, and more than 5,000 adults in the state who are in immediate need of emergency services.

Without additional funding, wait list slots only open up for two reasons.

- It's because somebody passes away or they move out of state.

There's really no other reason.

Each year, we work with the Office of Developmental Programs in the Department of Human Services.

We work with the governor's office, the budget secretary, and all members of the Pennsylvania General Assembly and I have to say we've been lucky in Pennsylvania.

In the last 20 years or so, there was really only one year when we did not see an increase for funding for people on the waiting list.

- [Narrator] But the waiver program is competing against thousands of other programs for its share of state dollars.

So, funding still has not caught up with demand.

- 75% of people with intellectual disabilities and autism live with families.

Throughout the United States, we need policymakers, we need legislators to understand.

Family caregivers are the safety net.

There's nobody after us.

- [Narrator] Meaning adults with autism face a ripple effect of risk and impacts and the need will only increase even if funding does not.

The number of adults with autism in Pennsylvania is expected to more than double by the year 2030.

- Transition planning is not rocket science.

We've been doing it now for a couple decades.

We know how to provide services for people with intellectual disabilities and autism.

We know how to provide community living, employment, education, healthcare.

We know how to provide the services.

We just need more funding to do it.

- [Narrator] Screening for autism has improved and yet, minority children continue to be significantly underdiagnosed compared to their white peers.

- We know that in our African American minority communities, that our numbers look different.

Our children are diagnosed anywhere from three to five years later or so.

So, your child's not getting the supports that they need.

- [Narrator] Black children with autism also are five times more likely to be misdiagnosed with conduct and behavior disorders.

- I wanted to see your stuff.

I need to see your stuff.

- What stuff?

- Your grades and stuff.

- [Narrator] It's a system of inequity Jamie Upshaw experienced firsthand when she sought a diagnosis for her son Jamir.

- My son was misdiagnosed multiple times before we actually received his autism diagnosis.

When I reached out for support and different things, there was really nobody out there that looked like me.

So, I kinda jumped in head first and like started a support group, 'cause I felt like I didn't want families to go through what I went through - [Narrator] The support group Jamie started turned into a nonprofit called Autism Urban Connections, Inc.

- We are actually the first and only African American minority family-focused autism organization in the state of PA.

I had no idea of the need that was out there.

Families like flocked in, looking for support.

- [Narrator] Jamie, along with one administrative assistant, serve nearly 1500 families with autistic loved ones of all ages in the Pittsburgh area.

They connect them to vital resources, financial assistance, social events, and a network of people who share their concerns.

- You're able to be with people that understand your cultural context and being able to build those relationships.

The benefit is just having that cultural love, that background that you know you're me almost type of feeling - [Narrator] Not understanding a community's challenges matters, because it perpetuates racial inequity.

- Years go by, your child still doesn't have a diagnosis.

- And that creates a ripple effect of problems.

Earlier intervention improves long-term outcomes for language, intellect, social skills, employment, and independent living.

When it comes to healthcare, underserved communities historically suffer from lack of access to physical and mental health providers.

Autism Urban Connections, Inc.

tries to fill in the gaps by coaching cohort groups.

- And it's a six-week training where we provide trainings and resources on applied behavior analysis, which is the science of the study of the function of behavior, which is used to develop treatment plans for those with disabilities.

So, we teach you how to identify where you're lacking and where we can provide resources for our loved ones to be able to have a healthier quality of life.

I'm passionate about what I do, because this is my life.

This is the life of my son, my family, and the families that I serve.

(gentle music continues) This is a everybody fight, because this is a everybody issue, because everybody needs to get on board to see where the needs lie, to see where they can come in to help.

Autism affects every race, ethnicity.

It doesn't discriminate.

So, it's an everybody issue.

- [Narrator] Some people with autism fall through the cracks others fall into an abyss.

- I don't think that being autistic makes you more likely to commit a crime, but I do think it makes you more likely to be misunderstood in any interaction that you're gonna have and every interaction where you're misunderstood can add another pile onto what you have to get out of.

- [Narrator] A person with autism spectrum disorder is seven times more likely to intersect with the criminal justice system than a person who does not have autism.

- Behaviors that autistic people display or don't display might be considered non-compliant in a way that would threaten them in interactions with police, corrections officers, any staff at the jail, because people want you to respond appropriately and appropriately might mean comply.

Comply with how I want you to behave.

- [Narrator] State law requires police officers to undergo training to deescalate crises, but symptoms of autism include outbursts, anxiety, and inflexible thinking, which could mimic defiance and lead to arrests.

- The jail is naturally overstimulating.

They wouldn't be put in a special place in the jail that's more comfortable for them.

There is no more comfortable place in the jail.

It is a cinder block with cages and tired workers.

What we need to do is collect a lot of the records that your daughter has from her IEPs, from any psych evals.

- [Narrator] Pittsburgh attorney Kate Lovelace frequently represents clients who are on the autism spectrum.

- I've had clients that get through intake and they have torn their bodies apart, because they're just so physically uncomfortable.

They have scraped nails off, pulled hair out.

(suspenseful music) You maybe picked on by other inmates, because you're not responding appropriately, probably don't stand up for yourself.

If you are on the spectrum and you don't have advocates on the outside to help, I mean, you'll deteriorate in the jail.

He's never been verbal.

- [Caretaker] He doesn't say nonverbal.

What he says is he's not a very communicative guy.

- [Narrator] A prison stay of any length could traumatize an autistic person, but there's even more at stake as time goes on.

They could lose services provided by their Medicaid waiver, everything from housing to healthcare, if they are not released from jail within 90 days.

- And people have put a lot of effort into making sure that all these preventative services are in place.

That all falls apart after 90 days.

Is he willing to testify at the jail oversight board?

- He has many times.

- [Narrator] Lovelace serves on the autism task force in Allegheny County, recognizing the role autism may play in confessions, competency, and misunderstandings that land them in the system in the first place.

- Because of HIPAA.

A lot of times, you're living in a neighborhood and the person next to you just thinks you're weird or their kid thinks you're weird and that can escalate into not serious charges, but charges.

Yeah and that police report doesn't say... - [Narrator] In addition to neighbor disputes, sexual offenses are another common cause for criminal charges, charges Lovelace says sometimes, need more context to fully understand.

- And for a lot of people on the spectrum, they're learning the formalities of consent, but then, they look for consent in ways that may not be legal.

You're 18 and they're 14 and you really believe you're in love.

It could be that you went on Craigslist to find a prostitute and it was an FBI sting.

You will get charged and those are very, very, very serious charges.

- [Narrator] Lovelace stresses that being on the autism spectrum does not excuse a person for breaking the law.

- You know, being autistic doesn't mean you're incompetent, but I do think that being autistic or being an individual living on the spectrum can be really dangerous when it comes to a police interaction.

So, making sure that people are diagnosed appropriately or that attorneys have access to information to make sure that they don't end up in those situations is critical.

(gentle music) - [Narrator] Back at Step By Step in the South Hills of Pittsburgh, Ruth Buckley works as a program specialist and instructor.

- Follow this thing.

- [Narrator] Ruth's 31-year-old son Timmy attends the program.

Timmy started to show behavioral symptoms of autism when he was about about 18 months old.

- We started noticing he wasn't walking as well.

He wasn't talking.

He was shying away from people.

- [Narrator] A family friend suggested the possibility of autism.

- That's the first time we ever heard of autism.

- We studied, read everything in there.

It was like we immersed are... - And it scared the daylights out of us.

- But we immersed ourselves in what it was, because when you have children, whatever their needs are, you meet.

whatever their dreams are, you try to match.

- [Narrator] Timmy started receiving services through the school district with the help of a support coordinator.

- You want red?

Okay.

Put them up here.

And she once said to me anything I send you, you do, because if you don't, it's gonna affect his life after he turns 21.

Boy, was she right.

So, everything she asked me, I did.

Little more.

Okay.

Okay.

Put it back.

Good job.

- Every person has value and because he's not going to miss out on anything possible in life.

We don't worry about Timmy being isolated in this society, because he is brought up in so much love that will then reflect on him.

- Hey, Tim Tim, we'll see you later, okay?

- I always joke like the old TV show "Everyone Loves Raymond".

Well, everyone loves Timmy.

Come on.

- Go ahead, Tim!

- Come on, Tim!

(people cheering and clapping) - [Narrator] Perhaps, that love is most evident when Timmy runs with his dad.

- We created this team called Autism Runs and we decided that we were gonna put emphasis on autism awareness.

- [Narrator] Runners on the team are not autistic, but their shirts, banners, and fundraising draw attention to the disorder.

- So, I was running for Timmy and then, it was like let's see if he can run.

- [Narrator] Not only could Timmy run, he seemed to love it.

- And so, then it be transitioned from running for Timmy for running with Timmy.

- [Narrator] The Autism Runs team competes in long distance races, but Timmy joins his dad for portions of the course.

- For us, it is a race, but it's more a celebration of Timmy.

- Hey, who's the best runner?

- T T.

- That's right.

And now, I'll have, people will come see us at the park and they'll say I have a son who's autistic or I have a daughter.

How did you do this?

I once had someone say to me did you ever think about the things that you miss out in life, because you you had a son like Timmy?

And I said did you ever think about the things that you missed out on life, 'cause you didn't have a son like Timmy?

Honestly, he's made me a better person than I was.

Excuse me.

He made me a better father.

He just made our family and our lives better, made me a better person - [Narrator] For families touched by autism... - [Spectator] Go, Timmy!

- Let's go, Tim!

- [Narrator] The Buckleys have this advice.

- It'll be okay.

It will be okay.

(crowd cheering) They're gonna be different, but different doesn't make it bad.

It just makes it different than you expected.

Is it gonna be hard?

Absolutely.

Absolutely.

Are there times your heart's gonna break?

All the time.

(crowd cheering) - [Spectator] Good job, Timmy!

- [Chris] Come on!

- [Spectator] Good job!

- [Ruth] There you go, Tim.

- [Spectator] Good job, Timmy.

- But when you see a smile and you see them playing and you see them happy, you'll be okay.

- Awesome.

That's awesome!

(inspiring music) - Great job!

(inspiring music continues)