The Centers for Disease Control estimates that one in 36 children is diagnosed with autism.

What happens when those children become adults?

That is what we are here to discuss in this program, "Autism Aging Out."

I'm Cecelia Hollands, Director of Clinical Programming at the Barber National Institute in this collaboration with WQLN Public Broadcasting.

Joining me today is Dr. Maureen Barber-Carey, Executive Vice President of the Barber National Institute, and Carrie Kontis, Chief Officer for Intellectual Disabilities at the Barber National Institute.

In a few minutes, we will be viewing a program about the challenges and opportunities facing adults with autism that has been produced by WQED, the public television station in Pittsburgh.

But first, let's talk about the services closer to home in Northwestern Pennsylvania.

I'd like to begin by talking about autism, what it is, and how it can affect children and adults.

Maureen, you have been an expert working in this field.

When you talk to parents and families, what do you tell them about autism?

I think the first and foremost that you must mention is what autism is.

It's a neurological disorder, and it impacts one's learning, one's cognition, one's social skills, and one's language.

Recently, the CDC identified one in 36 children having autism, which is a huge increase since 2000.

In 2000, it was one in 150.

So, you can see the great increase in the statistic.

CECELIA: Sure.

So that's what the disorder is.

What are the services though that are available to families who have a child with autism?

There are is totally multiple services available and that's what families need to think about.

First of all, there's early intervention.

If your child is diagnosed at three or under, there are early intervention services available.

As well as if he's diagnosed between three and five, again, early intervention services through your local public school.

At age five, there is a mandate for education for all children with disabilities, and there again, is a wealth of education opportunities for children with autism.

It's important to keep in mind that autism is a spectrum disorder.

There are children who are very, very bright with autism and there are children who have moderate to severe intellectual disabilities with autism.

So, the child himself or herself will determine what kinds of services are available and what that child would be eligible for.

Over and above education, I think we need to think about other services that child would be eligible for.

There's many, many behavioral health services that children are eligible for, as well as families.

Families need the support, and there are services out there for them.

We also have camps.

At the Barber National Institute, we're running a number of summer camps for children with autism.

And in fact, we started the first program, Camp Connections for children with Asperger's many years ago.

I think it was about 16 years ago.

So there is a wealth of services.

A parent needs to speak up, and begin looking for services.

And the best way, I think, is really to call the Barber National Institute.

You can find out what we have available.

But over and above those services, I think it's important for parents to talk, start thinking about transition.

What happens when your child turns 18 or turns 21?

What services are out there?

And again, transition is not something just starts at that 18 or 21.

According to the law, IDEA, children are eligible to start talking about transition at age 14.

And you might think, "Well, 14 is quite young."

No, it really is not.

'Cause again, it's very, very important to be looking to the future for your child.

I remember my brother told me, and my brother is a pediatric neurologist, that when my son was 10, he started talking to me about transition.

"What are you doing to plan for transition?"

My immediate answer was, "He's 10, how can we plan for transition?"

But it is never too early to plan for transition, and that's what I really encourage families to do.

So, we do have a pretty comprehensive system for children with autism.

Carrie, can you talk a little bit more about what happens when a child with autism turns 21?

Sure, Cecelia.

You know, Pennsylvania is really lucky in a lot of ways related to our system and our services.

There are services available for persons who are autistic or persons who are autistic and intellectually disabled.

I think it really starts with what Maureen was saying.

One of the key factors I'd like to make sure people understand and hear is that the transition planning is key.

Really to understand what is coming after graduation from school, you need to understand transition, utilize some of the skills and some of the tools that are available.

Pennsylvania really emphasizes person-centered planning, and that really tailors services to what that particular individual needs.

So, how is that done?

Well, one of the ways a person-centered planning tool is called life course.

A lot of schools can use that.

A lot of supports coordinator organizations use that.

We'll talk a little bit about what support coordination is as well.

But it's really a system where you're looking at what the individual has accomplished, what they may need, what the individual, the family and the team think will be in need as that person ages, really kind of assessing needs and then looking where the person hopes to be, where the individual used to be, whether it's mom or dad or other relatives, where do they think they're going to go in the future and what do they hope to accomplish?

And then kind of, from there, looking at a trajectory and then trying to align the appropriate services for that.

So, that's one thing I would definitely say.

I'll talk a little bit about what's called the supports coordinator organization in Pennsylvania.

Individuals and families really do have this as a support.

Each county in Pennsylvania has something called supports coordination organization.

I would advise people to really get involved with that organization early.

Call them up.

Each, again, county would have one, and they would have that posted on websites or under their Department of Human Services.

The family really and the individual should get a hold of them, get a meeting, sit and talk about what their needs are, what the needs of the individual, whether it's a son, daughter, whoever it might be, and identify those needs.

Help is there with a supports coordinator.

They will look at what is eligible.

So, the individual has a certain criteria, what's eligible for different types of services or not eligible for services, but they're sort of a gatekeeper or a navigator for a family.

So that relationship and forging that early on is really pretty important.

Registering with the supports coordination unit is pretty easy.

Again, as I mentioned, call them, you can contact them through a website, but get with them so they can kind of talk about that.

From there, access to services really begins as to what the person's eligible for, what the criteria is and then really what type of capacity any service has at that point.

Well, thank you.

And, what are some of the options for adults?

Okay.

You know, Cecilia, I think what I'll do is talk a little bit first about one of the primary options.

Pennsylvania is actually an Employment-First state.

What that means basically is, back in 2016, I think it was Governor Wolf wrote an executive order establishing Pennsylvania as a Employment-First state.

Basically that the policy for Pennsylvania would be that those services are embraced and we should align funding and access to allow people to do things in their community, including employment.

In 2018, there was actually a legislative act which turned that into formal policy for Pennsylvania, and again, aligned funding, aligned services with this particular philosophy.

So, Supported Employment is one of the services that is available for people with autism, intellectual disabilities and autism, or other types of disabilities.

And the first way you would access Supported Employment is through what's called the Office of Vocational Rehabilitation.

We frequently use acronyms, so I'm going to say OVR, and OVR is an interesting service.

It really does,... Again, it's one of the gatekeepers to services.

A family or an individual would get in contact with OVR.

They would go through an intake process, set things up, understand if they're eligible or if they're not eligible.

And from there, if they are eligible, begin to do things with Supported Employment, those types of things.

They would actually be assigned an OVR counselor.

That person would again, help them navigate through this kind of specialized area of employment for that.

So that is a very integral part of the Employment-First.

We could talk a little bit more about other services that are within employment as we go a little further.

We have many wonderful stories about adults who have found meaningful opportunities with community employers through the Supported Employment Program.

We're now going to see two of those stories as told from our Bollinger Campus in Warren in this brief video.

It gives these young men and/or women a real purpose to get up and get going.

and they're contributing members to society and that's huge.

[soft upbeat music] Our Supported Employment Program is for most of our clients that are here.

When a client wants to go to a certain place and they have an open position, I usually start with going and talking to the employer.

The last 25 years, we've had two other young men, now Andy will make number three that have worked with us and we've had good experiences with them all.

We started out with another young gentleman that came in and he worked with us and has furthered himself onto school in early childhood.

And now, we have taken on Hallie.

Hallie's been with me now since June.

As far as working with the Barber Center, and to get Andy here now, the current young man is with us, they were very receptive to whatever we needed.

We make sure that when we take them in for interviews, we go through all of their paperwork and make sure that everything's together, make sure that they have everything.

And then I kind of tell them about the job coaches, and what they would be doing as far as that goes.

CORKY: They came down with, you know, the initial meet and greet just to see if we're both comfortable, back and forth, following it up with phone conversations, and have definitely been very interactive as far as how things have gone.

We've had great support.

They've really kind of been there through the whole ride, and it's been very nice to have that because there are some things that we don't know how to handle, so we go to them and they help us.

[soft upbeat music] A lot of our employers, when we go into a new job, are fabulous when it comes to working with the individuals.

A lot of them love to have them there.

The kids love her.

Like they come in and they're like, "Miss Hallie!"

She helps us with lunch 'cause she comes in around 11:30.

On Tuesdays and Thursdays, she comes in and she gets all the cots out for nap.

I work with kids, and help them, maintain them, and also help them with lunches and play, and I feel appreciated.

[Hallie laughing] So, I've done pretty good here.

In a small business like this, we're not pigeonholed into one thing.

We all do a lot of different things.

And Andy's invaluable.

He jumps in and out and helps a lot of us with different things that we do.

He multitasks very well, takes a lot of pride in what he does.

And all three of the young men over the years that we've had, they've all been that way.

Well, I think a program like this is great for our community.

It gives those individuals that might not know what they wanna do, a chance to work out.

Give them a chance to be out there in the community, give them a chance to show what they're capable of doing.

These people take a lot of pride in what they're doing.

They're reliable, they're dependable.

I mean, these are things that's hard to find today in the workforce.

[hopeful music] STEPHANIE: They're getting a good worker.

They can depend on the client.

They're very loyal.

When it comes to the clients, they're very dedicated.

You know, we've had two and they've both have worked out.

I would definitely say try it, to any employer, try it.

You put them in the right spot, then they'll come through for you.

I'm very confident [hopeful music] These clients want to be out in the community too.

They wanna a job, they wanna work.

Give them a chance!

[thoughtful music] And that video was made possible from a grant from KeyBank to create greater awareness about employment for adults with autism and intellectual disabilities.

Carrie, what is the main funding stream that families may want to know about?

Sure.

Well today, I just wanna really emphasize two, in particular for persons who are autistic.

There's an Adult Autism Waiver, and there's a second one which is also very helpful.

It's called the Consolidated Waiver.

This would be for persons who are either intellectually disabled, or intellectually disabled and autistic, or just autistic.

So those are really the two primary pieces, and again, how you access that, it's that supports coordination organization that I mentioned previously.

It's really getting a hold of them and determining eligibility and seeing what funding stream really fits the needs of the individual themselves.

Good.

We will be back soon to discuss other opportunities for adults with disabilities, and to hear from a parent who is navigating the system for her adult son.

But first, we are happy to share this program created by WQED public television in Pittsburgh, "Autism Aging Out."

- [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) Welcome back.

I hope you enjoyed the production of "Autism: Aging Out," produced by WQED Public Television in Pittsburgh.

I'm Cecelia Hollands, director of clinical programming at the Barber National Institute, and we are looking at the challenges and opportunities here in Northwestern Pennsylvania that affect adults with autism and their families.

I'm here with Dr. Maureen Barber-Carey, executive vice president of the Barber National Institute, and Carrie Kontis, chief officer for intellectual disability services at the Barber National Institute.

And for this segment, we are joined by Karen Groshek, a parent who has agreed to share some of her experiences finding services for her adult son, Eric.

Maureen, can you quickly recap what happens when an individual with autism is getting ready to transition to the adult system?

Well, as we discussed earlier, transition really starts at age 14.

So by the time you're gonna be 18 or 21, you will know, are you looking to employment, are you looking to an adult day program, are you looking to college, or are you looking to community college?

So all that should have happened in that period of 14 to 21.

Gotcha, gotcha.

And Carrie, what are some of the services available to adults?

I know that we talked about employment, but what are some of the other options?

Let's just quickly talk about employment one more time.

There are services underneath that supported employment, like a community-based work assessment job finding, how to find a job, and then job coaching as well.

There are some other day services, such as community participation support.

Helps with skill-building, helps with community integration.

We have something called Club Erie, which is really community-based.

You're out in your own local environment, your own local area throughout the day, socializing in and learning your environment.

And then we also have another service called small group employment.

This kinda bridges a gap between some of the other services I mentioned before somebody may be ready to go to supported employment.

CECELIA: Thank you, thank you.

And one of the non-traditional programs is Agency with Choice.

Carrie, what does this program offer for adults and families?

Well, Agency with Choice is really an interesting program and really brings a lot of benefits to families, I think.

It's a program that's based on the ethic of having the family or the individual be able to self-direct their own services.

They really have greater choice.

They are able to sometimes even employ family members.

It allows a person to stay at home longer with their family.

That's good for a lot of people.

Or it also can support a person who is going to kinda be able to move out more independently on their own.

Great.

Well, thank you for that explanation.

We are fortunate to have a parent here for this discussion, and we welcome Karen Groshek.

Thank you for being willing to share your perspective as a mom of an adult with autism.

Can you recall what it was like when Eric was getting ready to graduate and you were preparing to leave the structure of the school system?

It was terrifying.

[chuckling] [Cecelia laughing] I'm not gonna lie.

I was very afraid for the future.

Eric had been part of the Barber Institute since he was a baby, starting with early intervention services, and then part of the school until he was 21.

And then now.

the transition to, he's in the adult day program, which is, the school made it a seamless transition.

Yeah.

What are some of the services that you ended up choosing for Eric, and how have they enriched Eric's life and your life as a family?

Well, based on Eric's level of functioning, because he's non-verbal and he had a lot of behavioral needs and such, we decided after touring and viewing the day program that that would be the best option.

And he's in, it's called 99, and he's at the Barber Institute.

But I was kind of under the conception.

I didn't want him to just sit, and he doesn't sit still very long, so we had to get really creative, and it has been a godsend to him.

He's out in the community every single day.

We created a program for him with his day program, and we also use Agency with Choice evenings and weekends.

And Eric is working on all of his goals in in-home and community in both programs.

So he is out just enjoying.

You'll find him bowling, at the mall, hiking, going to the playgrounds.

He did do some volunteering.

He's not able to keep, you know, handle a job, but he's able to volunteer for small bits of time.

But he's living his best life, truly, and I never, ever thought.

I was crying my head off at graduation.

CECELIA: [laughing] Yeah.

Not ever believing this could happen, but it can.

Yeah, yeah.

So you talked about some of the activities that Eric does.

How would you describe a typical day for Eric, and what have been some of the rewards for him in his adult life?

Well, a typical day, Eric has to be very routine.

So the day program has been wonderful, 'cause it is very- It isn't closed very many times of the year.

So Monday through Friday, he arrives at 8:00, and he's home by 3:30, and every day is the same.

He goes into his room and he has his routine there, but he does some skill-building and his little bit of socializing there, and then they head out in a van into the community.

So he goes out, and he's learning all of the ways to, you know, behave in public and be part of the Erie community.

And everybody knows him, and it's really cool.

And then when he comes home, he has support through Agency with Choice, and we continue on in the weekends with a lot of the same goals.

So for him, he's just, he's built these relationships with the people at the day program, these one-on-one relationships with his workers through the Agency with Choice, and he truly, even though he can't verbalize it, you can see it in his eyes.

He talks with his eyes, and he just lights up, and he loves to go every day.

He knows at 7:45, he's getting in the car, and he's going to his favorite place.

So it's been, it's just wonderful to see.

Yeah.

So it sounds like it's been a really wonderful experience for Eric, as well as for your family.

It has.

Yeah.

Carrie, can you talk a little bit about any advice you would have for parents or families who are either entering the adult system or who want to explore new opportunities within that system?

Sure.

I think the one thing is what we've already said and Maureen said it best, really, you need to embrace transition from school to adulthood, start there.

I would advise families or individuals to get in contact with their local Supports Coordination unit in Erie.

We have one that's called Erie County Care Management.

I would also advise families to really think about, you know, getting in contact with a service provider in Erie.

Could be Barber National Institute, might be some other service provider.

Ask for a tour.

You heard Karen kinda talk about that.

I think you need to kinda see, touch, and take a look at things before you make any final decisions.

Again, Erie County Care Management will navigate the family through some of that.

I would also advise that families can explore, there's a website called MyODP, very easy, and they have a whole family and individual page that helps explain services, there's videos on there.

Educate yourself that way.

Don't just listen to Supports Coordination, come for the tour, see what we have to say, but think about it.

And then I guess, in finality I would really say people need to start early, they need to try and be informed, and then ask plenty of questions, because it really is a service that doesn't have to be one service, you can braid these different services together, just like Karen kinda talked about.

She's using two right now.

Yeah.

Well, thank you so much.

And I think if I could only add here that Eric is a unique young man.

I've known Eric since he was three years old.

Persons with autism are a total spectrum, so again, what works for Eric might work for John, but might not work for Susie.

So Karen's story is a beautiful one, and many, many children who become young adults are similar to Eric and would benefit from the programs and services Karen and her family have benefited from.

But also keep in mind that you are very unique when you have autism, and there's not one service that fits all the children or all the adults.

I want to thank our panelists, Dr. Maureen Barber-Carey, Carrie Kontis, and Karen Groshek.

If you have more questions about any of the services that we discussed or about the Barber National Institute, please visit our website, barberinstitute.org.

You can also call the Barber National Institute at 814-453-7661, and you will be connected with someone who can help.

I would also like to thank WQLN Public Broadcasting for this opportunity to talk about "Autism: Aging Out."