Autism through the lifespan #6: Early Adulthood

For most, early adulthood is full of new found independence. Going to college, getting a job, moving from home and possibly starting one’s own family are among early adulthood’s rites of passage. But a wave of autistic adolescents are becoming adults and will most likely struggle with all of those things.

For most, early adulthood is full of new found independence. Going to college, getting a job, moving from home and possibly starting one’s own family are among early adulthood’s rites of passage. But a wave of autistic adolescents are becoming adults and will most likely struggle with all of those things.

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

 

Ray Springer and Amanda Smith are planning their wedding. They’ve been together for 3 years. They met at a Valentine’s Day dance at their job.

Amanda: I asked my friend Katie, I said, ‘Katie, who’s that good looking guy up there’ and she said, ‘Oh you’ll find out, you’ll find out,’ of course he comes to me he goes, ‘ What’s your name?’ and I said, “Amanda’ he goes, ‘Would you like to dance with me?’ And I was kind of shy, and then I told him and he goes, ‘Do you have a boyfriend?’ and I said, ‘No’ he says, ‘Would you like to be my girlfriend?’ I said, ‘Sure’ and that’s how we hooked up.

Ray: Amanda is a sweet, sweet person in the world and all that and she always says I love you. That’s what she tells me.

 

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Ray has autism. He is 25. Amanda has intellectual disabilities. She is 21. They live in his parent’s basement.

 

Ray’s mother Pauline.

Pauline: They do have to pay some room and board, they buy their own food and they’re on a budget. They each get so much money to spend. Of course I assume the put it together am I right?

Ray and Amanda: Yea. Of course we do.

For those with autism, a disorder characterized by social deficits, when it comes to relationships, they may need extra help.

Joanne Migyanka, a special education professor at Indiana University of Pennsylvania counsels the couple on various issues.

Joanne: Compromise is a big issue. Managing their emotions so that, when they have a conflict, how do they resolve that conflict so that it doesn’t involve yelling or hitting or things that are borderline abusive to each other.

She helps them with budgeting their money and sexuality.

Early adulthood is full of milestones. Falling in love is among them.

Joanne: There are many people with Asbergers or high-functioning autism who are married and have families. On the lower end of the spectrum, not so much.

Those years aren’t just a time of newfound independence, its when their services drop off. The specialists that have been visiting them daily stop. Rigid routines such as school, end. That can be devastating. It was for Ray.

Joanne: When he graduated from high school that social network that he had just totally disappeared and he was very, very depressed.

Ray and Amanda work at The Cambria County Association for the Blind and Handicapped. It provides training and employment for people with disabilities. He does assembly line work.

They have jobs. Although schools prepare their students for the transition, jobs may not be there for the autistic teenagers becoming adults. Especially now. Joanne: These are hard times and there aren’t that many employers out there that are willing to provide part-time employment and provide something for the disabled.

That’s Janice Hebert, whose 23-year-old daughter has autism. Hers is a constant complaint. It was heard at a Town Hall meeting held a couple months ago in Monroeville on Advancing the Future for Adults with Autism and it was echoed at a forum in Oakland late last year.

Autism research, funding and services have vastly focused on children.

In the early 90’s, large amounts of children started getting autism diagnoses. Now they are becoming adults. In 2005, more than 1,400 Pennsylvania adults were identified as autistic, just over seven percent of the total autism population. In 2010, that number is expected to increase 179 percent to more than 3,800. By 2015, the state will have more than 10,000 adults with autism. And by 2020 the adult autism population will be about equal to the commonwealth’s entire autism population from 2005.

Nina Wall Cote runs the Bureau of Autism Services.

Nina: The community tends to be very patient when children are tiny and they’re struggling, but when they’re older and look more threatening, people are quick to make that call.

That call may be to the police. It’s a problem Joanne Migyanka has seen before.

Joanne: A young man who has autism and his father is a professor and he was waiting outside the campus on the sidewalk for his father to come out of work – and so he is pacing back and forth, pacing back and forth, his father’s late, so he’s getting a little more anxious, he begins talking to himself. People misconstrued it as somebody odd, somebody with a mental illness, some of the co-eds were frightened of him and they called the police. And then the police when they spoke to him didn’t recognize that he had autism because he is a bit more higher-functioning. When a person with autism is confronted like that, and have a difficult time explaining their situation – which they do- and then they begin to engage in more stereotypic behaviors maybe hand-flapping, jumping, finger flicking, talking to themselves, yelling…

Scenes like that have repeatedly occurred in public areas in their community. It’s a growing problem.

Vince Nocera is 24. He lives with his parents and works as a security guard at a steel plant while he studies computer forensics.

A couple years ago, he expressed some negative feelings towards a former teacher.

Vince: There was an email. Just a subject line, there wasn’t any actual content, the subject line contained threatening content. I actually was not fully intent upon sending it, I meant to delete it. I accidentally hit the send button because that’s what I’m so accustomed to doing and consequently it got to her. She did what probably most anybody else would do – especially a teacher in a school – brought it to the attention of the authorities who later ended up charging me with terroristic threats.

The charges were eventually dropped.

Vince will someday move out of his parent’s home. His mother says he will need some kind of support. Vince drives. But many people with autism don’t. When Ray and Amanda leave his parents home they hope to live in an assisted living facility near a bus line.

If the infrastructure is not in place, that breeds dependence and leaves few choices in a car-centric culture.

Sherry Barnett’s son Timothy is 19.

Sherri: He doesn’t drive so he can’t go anywhere. Where we live, transportation is hard.

He lives with his family in Munhall, takes classes at Community College of Allegheny County and works at Mellon Arena. Timothy: I usually serve hot dogs and nachos to all the Penguins fans at all the hockey games.

Anytime he goes anywhere it is because his parents drive him.

Dating is hard. Timothy has never dated. And Vince says of all the changes he has made in his behavior, it’s the one hurdle he struggles with.

Vince: The longest relationships I’ve had were very short-lived out of all the improvements I’ve made and all the ways I don’t – in the eyes of others and myself – behave so much like a conventional high-functioning autistic, maintaining a relationship seems to be the one obstacle that’s inevitable.

He doesn’t tell his dates that he has autism.

Vince: It doesn’t last long enough for me to get to that point. I think that’s something that comes later once a rapport has been more firmly established that’s the way it should be, that’s the way relationships work.

The way relationships work is something Joanne Migyanka is working on closely with Ray and Amanda. They want a child. Amanda has expressed concerns that their child may have autism or another disability. Family planning is a constant topic of conversation.

Joanne: Oftentimes they don’t generalize this or retain a lot of the information so you find that you’re repeating the same information over and over. And even talking about the whole reproductive cycle – and when is it safe, when should you engage in sexual intercourse and what about birth control.

They plan to have over a hundred people at their wedding. Ray says it will be the happiest day of his life.

Ray: It’s going to be a blessing wedding for me and her and I did tell Amanda a couple of times I’m going to be in tears while she approaches to me in the ceremony – for joy.

Ray’s parents were older when they had him. His father has Alzheimer’s Disease. They know they will someday pass away. He is an only child. The goal is to get him and Amanda to live as independently as possible, but with a bit of support. Amanda’s mother has not been supportive of the relationship.

Amanda: We talked about it and after we talked about it we decided to get married and said you ask my mom and I’ll ask my mom and my mom’s not happy with it.

Erika Beras: Why isn’t your mom happy with it?

Amanda:Because she don’t think he’s the right guy for me.

Erika Beras: Why doesn’t she think he’s the right guy for you?

Amanda: Because he has autism. She’s been telling me other things about other guys, ‘Go find other guys,’ and I keep on telling her, ‘ No, I want him.’

There aren’t numbers for how many people on the spectrum end up marrying or partnering up. But anecdotally, it’s a rarity.

Pauline Springer says much of her son’s social literacy is the result of their close-knit community and the years of behavioral and speech therapy. He has occasional tantrums, he’s had seizures and he struggles in many ways but he his progression has surprised everyone around him.

Pauline: What is normal, I don’t know what normal is, but we’re always trying to make them fit into a normal world. Sometimes it’s a square peg going into a round hole, and its very difficult for them to understand but he has learned to shove that peg in there in a lot of ways that some autistic kids never learn.

Ray and Amanda will get married this summer.

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