Autism through the lifespan #7- Adulthood

As part of our continuing series on autism, Erika Beras reports on the challenges and triumphs of adulthood with autism.

As part of our continuing series on autism, Erika Beras reports on the challenges and triumphs of adulthood with autism.

Part seven of a nine-part series covering autism’s impact through the lifespan. Erika Beras, behavioral health reporter at WDUQ in Pittsburgh, reports.

 

As far as an adult with autism goes, Jeff Hudale is kinda the poster-child. He’s been in studies, sat on state task forces and is active in the autism community. He was in his teens, misdiagnosed with schizophrenia when doctors found that he actually had autism.

He ended up graduating from The University of Pittsburgh with a degree in Civil and Environmental Engineering.

He got a job at a small firm and didn’t disclose his disability.

 

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Jeff: About a year after I was hired that I guess I was doing something for them one day in the office and my hands must have been flapping about something and she asked, ‘ Jeff are you autistic?’ And I immediately was startled, I thought, ‘Oh No, I’m going to get fired.’

 

He didn’t. But a few years later, he was laid off. He spent decade looking for work in his field. He applied for jobs.

Jeff: During an interview, sometimes my eyes would drift away and some people think if I wasn’t looking directly at them that I wasn’t being honest with them but then again a lot of people don’t really understand that’s one of our little idiosyncrasies.

Jeff is a higher-functioning autistic – book smart, great with numbers, an avid conversationalist. A few years ago he got a job at BNY Mellon Corporation.

Jeff: Its great to be fully employed but I feel that my skills are not really being utilized properly.

His is a common concern among high-functioning autistic adults. They can get through college. But when they get jobs they flunk coffee break.

Phil: I’ve never held a job for more than about a year and a half in my life. I simply cannot maintain employment. And the problem has to do with always with social issues, every job I have had they say. ‘Phil your good at that job.’ All the performance reviews say, ‘Phil your really good at that job.’ And, ‘We can’t keep you.’

That’s Phil Garrow. He’s 46 and has Asperger’s.

Phil: One of the great sadnesses in my life is that I have received all of this training, I’ve gone to school. I’m a mechanical engineer. I’m a computer scientist. I’ve gone to school. And that I can’t hold a job because of social reasons, no matter how good I am at those skills, no matter how much money, no matter how much time I’ve spent in therapy and other types of training. I can’t tell you how sad that makes me.

Much of the attention focused on autism has to do with childhood. But autism is a lifelong disorder. We spend most of our lives as adults. And we spend much of our adulthood working.

Caitlan Freedman is 30. She’s Phil’s partner.

Caitlan: Autism is a different disability than being blinded or losing the use of one’s limbs. It is what’s called a social disability.

The traits that might drive others away from them, brought the pair together.

Phil: There is an understanding that we have of each other’s sensory and social needs.

Phil says the hardest hurdle is the intolerance people display towards adults with autism. He has what he calls a blindness, he can’t pick up on social cues.

Phil: People build libraries about what works and what doesn’t work. If you miss those clues starting at birth, then you don’t build those libraries. Or the libraries are much harder to build. The failures in building those libraries, as one gets older, are much more dramatic. If a two-year-old misses a visual clue you say, ‘ahh, they’re 2 years old.’ If a four-year-old misses them, again you say, ‘ahh.’ If a 44-year-old misses them, you say, ‘That guy…why didn’t…he shoulda…oh boy,’ you know. That’s a big thing. That’s a problem.

It’s a common problem that professionals say they see. Larry Sutton manages the local Bureau of Autism Services for the Commonwealth.

Larry: One individual was doing very well until they changed the bathroom cleaning schedule. He became enraged because of what had occurred. He was fired for workplace violence for yelling at the staff that was cleaning the bathroom.

Trouble with work may lead some adults to self-employment in creative fields. Sheryl Yaegar’s didn’t thrive at any of her jobs. A few years ago she discovered painting with pastels. Not only has art provided her with a livelihood, it’s become an essential part of her identity.

Sheryl: I was abused as a child and it made me feel better because it took away a lot of the pain and a lot of the hurt and sorrow that I suffered throughout my childhood years.

She has been lauded for her work and done over 2,000 paintings, which she keeps in boxes in the kitchen of the apartment in a Senior Citizen high-rise where she lives. Her work has been in shows around the country.

Sheryl: I do more birds and animals than anything else…I feel free when I do art, one with God and one with nature…For instance even when I see birds or nature stuff outside or whatever, I seem to relate to them better than people. I guess because they don’t talk back or they’re innocent and they accept you for who you are.

She has autism. Like many older adults on the spectrum, she wasn’t diagnosed as a child. She was in her 30’s. She’s 49 now. She says her life is lonely.

Sheryl: I really don’t have any true friends and I would really like to find autistic friends that have a lot of things in common with me.

Her limitations aren’t limited to social ones.

Sheryl: Sometimes I’m really angry that I have autism. I feel that way because I can’t do things as good as other people. Like I can’t, no matter how many times I try, I can’t do computers and I can’t put film in a camera.

Sheryl says most of the support groups aimed at adults with autism are filled with younger adults, not people in middle-age like her. Phil and Caitlan belong to one such group.

Caitlan: Meeting other people with autism it’s kind of like looking into a mirror.

Phil: With that community, with that group, the way that I talk, the way that I am, the decisions that I make, the behaviors – all seem to fit, all seem normal, all seem reasonable. Outside of that room, I’m a little weird.

They are renovating a home in Oakland. For them, housing isn’t an issue. But it is for many on the spectrum. Jeff lives in Penn Hills with his aunt and cousin. His parents are dead. He has never lived on his own.

Jeff: Very clutzy and all, and not really all that organized. When it comes to intellectual things I do all right, but common sense to me, I’m a liability.

His aunt says if she were not around, Jeff would live on the street. She buys his clothes, cooks his meals and looks after him. His being social is also his pitfall.

Flo: People pick on him all the time because of his condition. Several times in his lifetime, he was swindled out of quite a bit of money. One time it was to the tune of $35,000.

He gets harassed.

Jeff: A couple bowling friends of mine came over and said, ‘Well Jeff, no matter what, you’ll always be Rainman to me,’ and I go, ‘Please, don’t you dare call me Rainman.’ Then a couple of other guys said, ‘ok, Rainman.’

And he gets taken advantage of.

Flo: They see that he’s not quite right I think they all think, ‘Well. Why shouldn’t I try?’

There is another area where he is deficient in. Jeff and his aunt Flo.

Jeff: Not only do I not have a girlfriend, I’ll take it one step further and say, I’ve never even had a date. And there have been some people who have actually even made fun of me because of it.

Flo: Jeffrey does not date, he has never dated, he is 38 years old. And he would really have a rough time being out on a date with a young lady at this stage in his life because he’s never done it. He’d probably be all thumbs like anyone else whose doing that for the first time.

Jeff’s saving grace has been living with his aunt, although she worries what will happen when she’s gone.

Richard Campbell is 56 years old. He has spent much of his childhood and adulthood in and out of psychiatric hospitals and personal care homes. He has dual diagnoses – schizophrenia and bipolar. He now lives in a group home. About 20 years ago, he was diagnosed with autism.

Richard: I was stunned. I was overwhelmed.

He’s had problems keeping jobs or staying in personal care homes. But the biggest problem, he says, has been being bullied.

Richard: Some people call me retarded, stupid, I’m not going to say anything else, but people still pick on me today sometimes.

Increasingly, medical and social service Professionals are getting more calls from adults or their family members saying they’ve heard of autism and think they fit the bill. Some have been misdiagnosed.

Nina Wall Cote runs the state’s Bureau of Autism Services.

Nina: Adults with autism are very very hard to find because they are labeled with other things, there really wasn’t a service delivery for people with a diagnosis of autism so the only way you could get services is if you had a diagnosis of mental retardation or an intellectual disability or mental health diagnosis.

Recently, Pennsylvania revealed the results of an autism census. At present there are an estimated nearly 4,000 people with autism who are over 21.

Nina: We have a count of the number of adults with autism which we know is an egregious lowball and many of them are lost to us. They are at home with aging parents they’re homeless, they’re in the criminal justice system.

The state has an Adult Autism Waiver that helps pay for care.

Nina:We will need more in the way of resources to support the thousands and thousands of people who will be coming into the system. And we don’t have an answer for that part.

Erika Beras reports on behavioral health issues for WDUQ in Pittsburg, PA.