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

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Demystifying Autism From The Inside Out

Disclosure: Breaking the “Outing” Cycle

By William Stillman

It may be very challenging for parents, caregivers, educators and others to fully understand what it is to endure an autistic experience. Because most people with Asperger’s are intensely sensitive beings, we should never underestimate the potential for others’ remarks to cause undue humiliation and embarrassment. Many caregivers are unaware that their words may be perceived this way; and none of us who are caring and committed willfully wishes to cause hurt feelings.

Our society wrongly condones as acceptable our speaking openly and freely about the most intimate details of another person’s physical, mental, behavioral, and educational being. We’re most likely to do this with children, the elderly and people with different ways of being. Too often, a person’s “differences” are discussed at length, on their behalf, and without permission. Such conversations frequently occur in the presence of the individual, be it a child or adult. Usually the persons being discussed are without a voice or equal say. While caregivers believe they are engaged in altruistic support, a regrettable breach of trust has occurred.

Here is but one example. Recently, I was asked by a school-based training group to co-present on a two-person panel addressing autism and Asperger’s. I accepted, and learned that my co-panelist would be a professional colleague with whom I had previously worked. A short time later, I received a fax. It was the flyer announcing the panel and the logistics of registration. I assumed it was a draft submitted for my approval, but I learned it was the final copy and was already in mass distribution.

I was distraught, and here is why: my co-presenter was listed by his name, title, and professional affiliation. I was listed simply as, “William Stillman, adult with Asperger’s Syndrome.” Period. End of sentence. Instead of something like “William Stillman, autism author, presenter and consultant,” in one fell swoop I was reduced to “adult with Asperger’s Syndrome” and nothing more. I was “outed” without my permission or ability to control the dissemination of such confidential information---and I have a voice! In addition, my nearly twenty years in the field of supporting people with different ways of being was neatly excised; my work as a Pennsylvania government-level statewide point person for children and adolescents with autism obliterated; and my passion for supporting others’ understanding of the autistic experience, invalidated.

In a follow-up call to my contact person, I expressed my upset which had me rattled for days. I thought I was being asked to present because of my expertise, not as a curiosity. I am an educator, not an entertainer. Please allow me to be clear: I am in no way uncomfortable or ashamed of who I am, but people will learn about my Asperger’s as I choose to reveal it depending upon the circumstances. I certainly want to be known for all the things others find intriguing about me before I’m defined by my “difference.” It is a sliver of my sum total as a human being.

The next time you feel entitled or obligated to disclose information about someone with a perceived “difference,” whether that person is in your presence or not, please ask yourself:

  1. Do I have prior permission from the individual to do so?
  2. Is what I’m about to share gentle, respectful, private or even necessary?
  3. Would I be willing to say the exact same thing about myself in exactly the same forum---or have others say it about me without my prior consent and without a way to defend myself?
  4. Is there a more discreet manner in which to share the information, such as e-mailing or faxing sensitive information to vocational, educational, medical or school personnel?

I respectfully request that you reflect upon these words, and humbly thank you for your kind and pensive consideration.

©2005, William Stillman

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