In one way, autism is big business. Like many other childhood disabilities, autism generates a variety of expensive special needs services in the medical, educational, psychological and behavioral realms. Parents feed many dollars into our capitalist system in order to receive these critical services for their children. No wonder autism has generated a booming industry with: behavioral therapists, speech therapists, occupational therapists, developmental pediatricians, psychiatrists and pharmacologists. (And that’s just scratching the surface!) The demand for ABA (Applied Behavioral Analysis) alone—currently considered the most effective treatment for autism—far exceeds the supply. On Google, I visited one ABA site where there were over 6,000 openings for ABA therapists! And what about all of the special education teachers and tutors needed to work with 1 out of every 68 children born with autism? Clearly there aren’t enough people to fill those jobs either. Even colleges have developed expensive support programs for students with Asperger’s Syndrome and higher functioning ASDs. In addition, the autism conundrum employs researchers and pharmaceutical companies looking for prevention, treatments and ultimately, a cure (however unpopular that idea may be to the neurodiversity movement). Clearly, autism has become a billion dollar industry.
But who’s paying for the lion’s share of this billion dollar business? The parents, of course! I should know Henry and I paid for all the services listed above plus many more—most of them NOT covered by insurance. And what do we have to show for our investment? Our daughter: a lovely, brave, motivated young woman who managed to graduate from college, but who still has challenges as she longs to be independent. What she needs now is: a job, a home of her own (NOT an institution), some life skill support and a community that will embrace her. But our capitalist society (mostly) doesn’t provide services to young adults with autism because THEY can’t pay for the expensive therapy and treatments previously funded by their parents. By the time these kids on the spectrum grow up, most of their parents have exhausted their resources in addition to being near retirement. We are tapped out and worried about what will become of our “special needs” grownups when we are no longer around to watch over them. The neurotypical children who bullied or ignored our “different” kids usually don’t grow into compassionate adults who care about inclusion in the workplace.
Of course there are some intelligent and compassionate exceptions. According to Business Insider,two MIT graduates Rajesh Anandan and Art Schectman recently founded ULTRA Testing, a software-testing company created ESPECIALLY to hire people on the autistic spectrum. (Bravo!) Anandan has always believed that people with disabilities often have hidden talents that others fail to notice. For example, he says, someone who born blind might have superior hearing and someone born deaf might have better-than-average sight. The fact that people with autism and Asperger’s tend to engage in repetitive behaviors that many might consider boring is exactly what makes them uniquely qualified to stay focused on testing whether a particular piece of software works on different devices, operating systems and web browsers over and over again.
With almost 80% of adults on the autistic spectrum unemployed, ULTRA Testing can receive 150 applications in 72 hours. Unfortunately, Sarah’s talents do not lie in this area, so she can’t even compete for one of these jobs. Anandan’s analysis is the same as mine: “Even in a best-case scenario where you have a protective family and an inclusive education system, when kids age out, there are no jobs, there is no opportunity, and if you’re not from an affluent family, it’s really bad news.” YES!!