Monday, September 7, 2009

Disclosing the best kept secret of autism

What’s the best-kept secret of autism? Well, it may very well be the one that you’re keeping. Whether you’re a parent of a child with ASD, or someone with autism the debate rages on: “Should I tell others about my/my child’s autism, or not?”

From the parent’s perspective – at least upon initial diagnosis – the tendency tends to swing to the “tell” side. In fact, more so than tell, even broadcast to anyone met. This is often the case, as when a parent first receives the diagnostic news there is shock, grief, lack of understanding as to what it might mean for their child, creating a need to outreach to anyone and everyone for support, for answers.

Fast forward a few years, and past the initial shock. While some parents continue to share their family’s news widely, many others begin to pull back, not wanting to generate negative stigma for their child (or themselves). “Sure, my son’s behavior might seem ‘strange’ to others, but it’s none of their business.”

As those children grow into their teen years and adulthood and for those adults diagnosed later in life, there are more difficult decisions. Does disclosure open up the flood of discrimination – whether overt or less seen – among peers? Among fellow employees? To one’s employer?

Some adults are loath to mention anything about their autism in the workplace. “Let them think I’m shy, quirky, not social. But at least I can stick to the job at hand and get it done; who cares about interpersonal interaction.” In some cases, those people taking this stance find that their silence impedes their abilities to get promoted; they find that their self-isolation keep them from any visibility at all to their employers and they’ve become anonymous.

Others opt to disclose to their colleagues or employers and are greeted with a desire to understand and support, making allowances for job responsibilities better suited for their needs. Some even offer to help “practice” social skills or provide mentorship in navigating through the often perplexing NT world. Others, unfortunately, find the invisible stigma once they’ve disclosed follows them throughout their workplace.

There clearly is no one answer, and the success individuals have in any of these options is as varied as the individual.

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