Autism and Asperger Articles, Bill Stillman, Award-Winning Author

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Demystifying Autism From The Inside Out

The Curious Business of Autism

By William Stillman

I am often asked by parents of young children on the autism spectrum, "Will my child ever have a job?" The answer depends upon how the word "job" is defined; but, yes, there's no reason to believe that persons with autism shouldn't be gainfully employed—it's just that they'll have some pretty stiff competition. In what industry will they be employable? The one into which they were born: autism. And let's acknowledge that autism is an industry.

There are those in the curious business of autism who are profiting, and handsomely so. They are the so-called experts to whom everyone in the autism industry abdicates: parents and professionals. I'm not suggesting that many of these individuals are not well intended, but they are not autistic. They cannot presume to speak with intimacy about the autistic experience. They can only present their objective perspective based upon observation and interaction with individuals who are autistic. It is they who are the true experts; and yet very few are valued as such.

Several years ago in Pennsylvania, my home, state government convened an Autism Task Force to investigate the status of autism services and supports in our Commonwealth and advise the Department of Public Welfare with action plans to implement and improve the current system structure. Of the approximately 280 individuals who served on Pennsylvania's Autism Task Force, there was no one with autism invited to participate—all were parents and professionals, the presumed experts. This became most glaringly apparent during my Transition to Adulthood Subcommittee meetings; that I was appointed as a professional who happens to have Asperger's Syndrome was happenstance.

In reaction to the composition of the Autism Task Force, I contacted the Secretary of Public Welfare, under whom the Task Force was established, to discuss ways in which to ensure that people with autistic experiences are fully represented and included as self-advocates in all facets of the autism system development in Pennsylvania. I expressed the critical urgency that the wisdom and expertise of such individuals be carefully considered first and foremost as equal partners in this planning process.

During an in-person meeting in the Secretary's office, and throughout our interactions, I stressed the egregious nature of this oversight, to which the Secretary conceded. It was inconceivable that the very persons for whom the Autism Task Force had been planning had been excluded from the process! I know of no other consumer group that would tolerate this without serious protest or even instigation of litigation proceedings; and, having previously worked for Pennsylvania's Department of Public Welfare, I also know that office would have never considered any similar planning process without benefit of a consumer focus group. Furthermore, that persons with autism had not been invited, from the outset, as equal planning partners in the Autism Task Force perpetuated myths and stereotypes about disbeliefs of intellectual competence. Such individuals continue to be oppressed, devalued, abused and mislabeled as mentally retarded.

What I discussed in that meeting with the Secretary was the paramount importance of statewide regional, in-person forums to be scheduled for persons with autism to meet the Secretary and express their thoughts, insights and concerns. There had previously been no opportunities for the voices of autism self-advocates to be heard and listened to free from parental, educator, or provider influence. Despite a commitment from the Secretary, I found myself repeatedly restating what I believed to be my understanding of that commitment over the period of many months of silence. By this time, I was personally and professionally embarrassed, feeling accountable for having misled many individuals with autism (announcement of this effort had also been published in several Pennsylvania-based autism newsletters). To say that this inactivity has caused me to feel frustrated, disheartened and disappointed would be an understatement.

Where autism is concerned, I have the luxury and privilege of being verbally articulate whereas others are mute. In my work, I am well aware of my responsibility as an ambassador of goodwill on behalf of those individuals who are not yet in the position to speak openly and freely in the way that I am. However, I, too, am treated with tremendous disregard and indifference as people defer to the aforementioned "experts."

In closing, my point is this: if I have diligently made valiant attempts to advocate for all my brothers and sisters with autism to be included—if not employed—and my voice goes unheard and disregarded, how is it possible that anyone will ever listen to those without a voice at all? In my heart, I believe that most parents and professionals are well intentioned; and I can fully appreciate their demands, pressures and conflicting priorities. However, at this time, autism self-advocates sorely need affirmation of a partnership; I'm not speaking of tokenism but a true collaborative allegiance.

Where employment within the expansive autism industry is concerned, there should be unlimited possibilities for listening to the wisdom and expertise of those who live it, allowing them to self-determine how their lives will and should be—and fairly compensating them for their wealth of invaluable knowledge. But unless, and until, we shatter demeaning myths and stereotypes, and tear down walls of indifference, the voices of those with autism will continue to be held at bay and silenced by the industry that purports to know best.

©2007, William Stillman

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