When the School Bus Stops Coming: The Employment Dilemma for Adults with Autism (page 2)
“Charles Vaughn” devours each issue of Discover and Scientific American as son as the magazines land in his mailbox. Without hesitation he can tell you that the speed of light is 186 thousand miles per second . He multiplies gigantic numbers for fun . With Charles ’ high school graduation aproaching in June, his parents should be thrilled about their eldest son ’s prospects. Instead, they are terified . Charles is autistic . Now 21, he has difficulty starting a conversation .
Even though he has an above average I.Q., he has not learned to drive and he prefers to spend his free time watching cartoons on T.V. Until this year, he has received much of the help he needs through school under a federal law that allows people with disabilities to continue their public education until the year in which they turn 21. Through the school, he has started taking a computer course at the local community college, and he has a part-time job inputting at a communications company. But all that could end in June, when he dons a cap and gown and accepts his high school diploma. When Charles Vaughn turned 21 on January 11, he walked into a bureaucratic black hole. Charles lives in a state that provides no services for autistic adults. (Hillary Waldman, The Hartford Courant, February 16, 2006).
One of the greatest hoaxes a person can play is to give someone the expectation that life will be better following an exercise that requires significant investment in effort, time and money, and then inform him at the end that they knew all along that it really wouldn’t work out. Unfortunately, this hoax is played hundreds of thousands of times on people with autism, their families and the communities in which they live.
America has one of the best public education systems in the world. It promises to prepare its children to be able to live the American Dream, yet for people with autism that promise is rarely, if ever, realized. After years of struggling through their education years, most adults with autism find themselves without any opportunity to enjoy gainful employment or to live and recreate to their capacity in their communities (Holmes and Shore, 2005).
The problem lies in two areas: the lack of proper preparation for work during the education years and the lack of laws and funding to entitle adults with disabilities to the same rights established for children under IDEA (Individuals with Disabilities Education Improvement Act of 2004). Both areas must be addressed immediately, if America is to stem the tide of unemployment among its citizens with disabilities.
It is a generally accepted fact that more than 75% of Americans with disabilities are unemployed (Gerhardt and Holmes, 2004). It also has been established that if adults with autism do not find employment after their educational training, they have a 70% chance of not being gainfully employed throughout their life (Rebuck, 2006). Further, some studies have revealed that only 6% of people with autism spectrum disorder have a full-time job (National Autism Society, 2006). The remainder of individuals with autism are either unemployed or under-employed (Holmes, 1998).
The dilemma for adults with autism is that, unlike the entitlements they have for “an appropriate education” under the IDEA, once they leave the education system, there are no seamless entitlements. There are some federal and state procurements that might enable a modicum of services for adults, but they do not exist in the quantity and quality necessary for most adults with autism.
The Rehabilitation Services Administration (RSA) is responsible for serving adults with autism, but currently is serving fewer than 2,000 (Dew and Allan, 2007). If a person is eligible for Supplemental Security Income (SSI) or Social Security Disability Income (SS DI), they will receive monthly funds that can be used to support their living and employment arrangements. However, these funds are minimal (averaging $400 per month) and not nearly enough to afford an appropriate employment opportunity, let alone an appropriate living arrangement (Kaplin and Moore, 2000).
If a person is eligible for Medicaid funds, which have asset restrictions (less than $2,000 in assets) and, frequently, I.Q. restrictions (less than or equal to 70 I.Q.), they can be placed on a waiting list for adult services—services that may or may not be appropriate for their needs and may take years to acquire. Further, utilizing intelligence quotients for eligibility is ill conceived when it comes to autism. The most significant deficit many people with autism have is in the area of social skill development. A high I.Q. with low social skills (social quotient) leaves an individual severely compromised in the adult world.
Over the years it has been a struggle to get autism recognized as a unique and distinct disability from mental retardation. In fact, it was included under the Developmental Disabilities Act well over two decades ago. Yet most states continue to have departments or divisions of mental retardation servicing people with autism, but only if they have an I.Q. of less than 70, leaving many ineligible for services. This incongruity must be remedied to enable more advanced adults with autism to be fully productive in life.
The Services Conundrum
With the passage of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA 1990), people with autism have access to opportunities afforded all Americans and accommodations that are reasonable (Thomas, et al, 2000). Of course, accessibility and funding are two separate issues, and accessibility without funding, for most people with autism, is no accessibility at all.
Even with improved awareness of the needs of adults with autism, and decades of advocacy for appropriate employment services and opportunities for these adults, the majority are living at home with their aging parents with few if any meaningful job opportunities (Howlin, Goode, Hutton and Rutter, 2004). Most people with autism who have significant behavioral and cognitive challenges receive custodial care at best or no care at all. Those with higher cognitive capacities may graduate from college only to end up in psychiatric hospitals, drug treatment centers or even worse, jail, because they cannot access appropriate employment supports due to their average or above average I.Q. (Howlin, et. al., 2004).
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.
Reprinted with the permission of the Autism Society.
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