Damned if You Do, Damned if You Don’t: The Dilemma of Disclosing Autism

Autism, Daily Life, Neuroscience, Way of Life

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“…Brain variations are normal and should be respected, just like differences in gender and race. People with autism, according to this philosophy, aren’t abnormal. It’s just that they might need some extra support to live in a society built with “neurotypical” people in mind.” Microsoft Wants Autistic Coders. Can It Find Them And Keep Them?

I have no regrets in disclosing my autism. That aside, I definitely still harbor an internal discomfort in relation to others knowing I have autism.

There remains this residue — a thin layer of separateness. Something I can never quite wash away. Some of it is definitely self-invented, assumptions on my part and second-guessing, still learning to live in my own skin, despite what I think others think. But then there are obvious statements and signs that indicate, with 100% proof, that another is treating me differently because I am autistic. I get this familiar tingling inside, and then I react, at times, pushing myself to prove I am worthy, as if to say: I am alright despite being autistic.

I witness what surrounds—the questioning looks, the slight pauses, the rising tones — and I question is this because they know I am autistic or something else? To this day, just two years after my diagnosis of Asperger’s Syndrome, I ponder the pros and cons of being out of the autistic closet. I ponder the reasoning behind my actions. I ponder the immense relief and sense of newfound community, alongside the immense stigma and sense that I somehow need to prove myself to non-autistics. The idealist in me would like everyone who is autistic to say so, to be done with it. To shout it out proudly, and plaster their autism across billboards, to wear hats and shirts, and wave colorful flags.

“I am autistic. I am proud!”

I ache for us, as a society, to gain awareness, understand, accept; and then to move on, without having to announce “autism” ever again. Not because autism is bad or shameful, but because it isn’t anything anymore, nothing more or less, nothing but a variation of how the world is taken in and interpreted.

Essentially, I long to inhabit a society free of judgment over idiosyncrasies, to escape the indoctrinated way of acting “normal.” And then I think, how can one out run human nature and societal norms? How can there exist no standard way to be?

In considering whether someone should disclose that they are on the autism spectrum, a marching band of pros and cons arise. Anyone who is autistic can easily venture into the feasible benefits and risks of disclosing. We don’t need someone who is non-autistic to tell us what might happen. We all know, and some have lived, at some level, the risk of backlash. And some of us are fortunate to know the benefits of an inclusive and accepting environment. Yes, there are multiple ways disclosing autism can assist a person and enhance personal and working relationships. I would definitely recommend disclosing (on my good days). Even so, it’s all very subjective and dependent on multiple variables, including one’s sense of self-worth and ability to stick up for themselves, and the energy it takes to do so, and if they have a support system, someone to turn to when they feel the sting. There isn’t a right or wrong answer to disclosing or not. Still there is the potential threat—it’s always there. And there are ramifications, regardless of any precautionary measures or steps taken.

In reality, autism is a baby in the realm of marginalized minorities. Swarming, is false, outdated, and unsubstantiated information about autism spectrum disorders. Beginning to fly, queries of whether or not autism is even a disorder. And false information certainly abounds, leading to further queries. When professionals in the field of psychology are mistaking eye contact, empathy, imagination, and ability to make friends, as markers against feasibly having autism, how can we expect that the average non-autistic will get it? When autistic classes and seminars are saturated by teachers who are non-autistics, how are we heard? And how many immediately box us into constricting conclusions of less than, needs special treatment, fragile, or a charity case? How many think us to be like the one autistic they already know or have heard about? How many of us lose who we are and become something we are not, in the eyes of another with the mention of autism?

Today, I asked someone about their experience with disclosing, he confessed: “I deeply regret sharing my diagnosis. My coworker thought Aspergers was an extremely awful disability that makes people uncomfortable. He had no reference point. And nothing was ever the same again. It resulted in the end of our working relationship. If I was ever to go into another job, the last thing I would ever do is tell them I was autistic . . . No. I wouldn’t want people to know I am autistic or have Asperger’s Syndrome because they are just going to misinterpret it. I mean it’s a deal breaker for all NTs (neurotypical/non-autistic); they are never going to look at you the same. It’s not that I am afraid of what they think. I just know that once I tell them that it can never be undone. That’s not just in the workplace. It’s with doctors, family members, even my own parents . . . I don’t know what’s worse being judged because no one knows you have autism or knowing that if you tell people you have autism that action alone is going to come off as extremely strange. In theory, I won’t only be judged for my autism, but for the mere action of disclosing.” He went on to say, “Non-autistics don’t process the same as me. Telling them I am autistic made them look at me like I told them I like to wear pink girl panties. I never could wash away that initial expression of shock, and, to this day, I am not the same person in their eyes, even as nothing about me has changed.”

It seems we are in a predicament.

What would you do if you have autism? 
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