When the School Bus Stops Coming: The Employment Dilemma for Adults with Autism (continued)

And when families can find adult services, they often are too generic and, therefore, inappropriate. For example, it would be unconscionable to remove a wheelchair from physically disabled adults when they graduate from high school or college, thereby eliminating their prosthesis, which enables them to navigate their world. However, time and again this happens to adults with autism; their prosthesis—that is, their “prosthetic environment” (Holmes and Chaffee, 2007)—is taken away. A prosthetic environment for an adult with autism is one that is structured, consistent, dependable, reliable, supportive, accommodating, calming, comforting; but most of all, predictable (Holmes, 1998).

When we place people with autism in an employment opportunity or setting that does not have the attributes of a prosthetic environment, we have uniformly stripped them of the prostheses necessary for success. It is no wonder that the majority of adults with autism, if they are capable of finding employment opportunities, will fail.

Following are some case examples of the struggles that adults with autism face in securing employment:

Ann Bauer in a Washington Post op-ed piece, “Willing, Able and Unemployable,” states,“My 18-year-old son shambles. There is no other word for it. He walks like an old man-scraping the soles of his feet on the floor, tilting his head to one side and tucking it into the space between his neck and shoulder. Andrew has autism. When he was 16, I told him it was time to get a part-time job. I took him first to the coffee house where I wrote each morning, introducing him to the manager, and took my usual table. But even from a distance I could see things weren’t going well. The interview took three minutes, ending abruptly ... Next, I took Andrew to Target, a company known for its history of working with disabled people, only there is a catch. I was told when I called that their policy was to employ “visibly handicapped” workers ... People in wheelchairs qualified ... My son ...does not.” (Bauer, October 30, 2006)

Bauer’s frustration continued in attempt after attempt to get her son employed, instead receiving responses that her son was “a potential liability.” The only job she was able to get for him was a “starter job,” volunteering in a local nursing home “trundling a library cart from room to room.” She said he was “unfailingly patient and kind” and that the residents “grew to rely on him.” However, when a job became available in dining services, he was turned down because the manager “thought him odd.”

In Salt Lake City, Utah, Dawn and Brian Schmidt have a 22-year-old son who is aging out of the special education services school system. They said that without the structure and supervision that the school provides, their son Ryan is left to his own devices. He spends most of his days watching television and eating. The Schmidts watched their son deteriorate over the summer as boredom took hold and he lost the skills that he worked so hard to learn.

Ryan is one of 2,225 residents of Utah on a waiting list for services (Kirsten Stewart, The Salt Lake Tribune, 7/21/05). Ryan has been on the state’s waiting list for eight years and is existing on a $570 monthly Social Security check.

Finding Appropriate Placement

The difficulties of finding appropriate adult placements are too numerous to describe. Take, for example, John, whose mother has been advocating for appropriate applied behavioral analysis (ABA) services for her adult son. John eventually was placed in an out-of-state organization providing residential and employment services that utilize the principles of ABA.

Once there, he thrived. After many months of privately paying for the services, his family petitioned their state to help to pay for the services. The state declined and offered John a placement in a local program that offered generic services to a variety of people with disabilities. This agency allowed those in their care to do what they wanted, when they wanted, as part of their philosophy of “person centered planning.” John was placed in an apartment with one other resident and was given a job with a mobile crew that went to various locations cleaning and dispatching with trash.

Initially, John enjoyed being out with the crew but quickly tired of the work and asked to be returned to his apartment so he could play with his DVD games. When not accommodated, he would have behavioral outbursts, which led to his not going to work at all. Today, John spends his day playing with his DVD games along with his roommate, both of whom refuse to go to work.

In a recent correspondence from his mother, she stated: “John is now refusing to go anywhere with the staff, even to places he likes. Last week he was aggressive towards the staff and towards his roommate. He threw a couple of ceramic canisters at them, knocked a few chairs over and was basically intimidating them. Last Sunday morning the staff went outside to smoke a cigarette and he locked them out and started teasing his roommate. This resulted in the police coming once again. There is no program until February (current date is early January). I looked at the one possibility they have. There are eight individuals with three staff basically doing hand-over-hand activities and all practically nonverbal. They stamp bags and put cans and boxes into bags and do some clothes sorting, although I think that all of the activity is made up, nonmeaningful and probably [will] only keep John’s attention for 10 minutes. He shadowed the program last week. He liked the staff. The first day he thought he was Mr. Important. They eat lunch at 10 a.m. when they get there. After the second day he ate lunch and was ready to leave ... I think that having the police be part of their behavior plan is inappropriate and that their program is not meaningful or useful.”

These situations are all too common. Throughout the educational years of children with autism, it is a generally accepted maxim that they need predictable environments. Yet when they graduate from school, if they can find employment, they literally are placed under conditions that are not predictable and, therefore, highly anxiety producing and nonreinforcing. People under these conditions do what John did: engage in behavior that removes them from the unpleasant situation in order to be returned to reinforcing situations, like playing DVD games in the comfort of their home, without demands. Such conditions are counterproductive for adults with autism and result in significant skill and talent loss, which could be brought to use for the benefit of the community.