Imagine for a moment what it feels like to be a straight-A student in a graduate program while being offered positions bagging groceries.
The stress and humiliation of being offered minimum wage work becomes insurmountable.
So you reach out to your state’s Vocational Rehabilitation (Access VR) counselor for a more appropriate job placement.
Your counselor tells you the only job he can find you is a janitorial position. When you refuse, your job coach deems you “unemployable” and your case is promptly closed, even though you are eligible for services because of your autism diagnosis.
The aforementioned story is a snapshot of what happened to me (co-author Rebecca Botta-Zaluck), an autistic graduate student. I am not alone in experiencing these all-too-common encounters with state vocational rehabilitation agencies.
Because communication support is not part of the core rehabilitation services offered through Access VR, many individuals diagnosed with autism spectrum disorders are offered job placements that are not adequately suited to their abilities, education or skill levels.
Even with average or above-average intelligence, more than 90 percent of autistic adults are unemployed. If they do have a job, they are often accused of “asking too many questions” at work, leading to mishaps with supervisors.
Following verbal directions is an area of difficulty in a speaking world where it is assumed that spoken language reflects the intention of the speaker. For autistic speakers, the words might emerge vocally or in writing, but are a far way off from the actual communication of intent. Layer that with the struggle to filter and refine the language that emerges, and you have breakdowns in effective communication.
The difficulty that many individuals on the autism spectrum face when seeking employment is not a lack of ability, but a need for communication skills that are critical for success in the work place. Currently, Access-VR offers a cluster of services, such as technical training and job skills, to those who need them. But these services are often not as helpful for those who are already highly skilled, yet face challenges with regard to interpersonal communication.
Simply put, the current model focuses too heavily on skills and training, but leaves out critical communication support.
(Co-author Henny Kupferstein), an autistic college student, was training in music therapy, hoping to work with autistic clients in the future. In the academic program, there was constant pressure at her field placement site, which included navigating the instructions from her supervisor without accommodations or support. Communication breakdowns left everyone flustered and exhausted. “I was not recommended for an internship and therefore could not earn her board certification for music therapy.” Her vocational rehabilitation counselor ordered an employability evaluation, where she was found to be “significantly disabled,” on a “sixth-grade level” and recommended to work in “the janitorial field.
“That was three months after I had graduated from college with a 4.0 GPA.”
Excellent GPAs fail to tell the whole story of what happens when autistic adults attempt to work in professions that are consistent with their passion and expertise.
Janine Kruiswijk, executive director of New York’s Autism Society of the Greater Capital Region, says, “Asking the public to be aware of this issue is like trying to convince a foreign universe that students with autism spectrum disorders are worth the effort.”
Researchers stress that “professionals who are directly supporting adults with autism spectrum disorders in the workforce should focus additional efforts on social integration with co-workers,” rather than skills training.
Local state vocational rehabilitation agencies may be the only resource for eligible adults who received their diagnoses in adulthood and who do not qualify for a Medicaid developmental disabilities waiver.
This system is failing its autistic consumers and misappropriating funds to job skills training instead of communication supports.
For example: in 2012, New York’s ACCES-VR serviced 29,000 individuals. Of these, 4 percent (1,168 individuals) were autistic consumers but only 2.8 percent achieved employment — a mere 32 individuals statewide.
We became disillusioned by this very broken system. Together with hundreds of other self-advocates, we submitted a proposal to the deputy commissioner asking New York to become a model state in supporting autistic adults within the education and employment systems.
The proposal became the inspiration behind bill A5141/S4256, which would require New York ACCES-VR (Vocational Rehabilitation) to provide communication support services for consumers with social pragmatic language disorders related to autism spectrum disorders and other language impairments.
This piece of legislation will improve employment outcomes for autistic individuals who are currently struggling to find employment as well as those who are on the verge of teetering on the cliff of uncertainty once they reach age 18, when the majority of support services will disappear.
Rebecca Botta-Zalucki is a graduate student at UAlbany. Henny Kupferstein is now attending college in San Francisco.