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

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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? by Vauhini Vara

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, some five 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.

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20 thoughts on “Damned if You Do, Damned if You Don’t: The Dilemma of Disclosing Autism

  1. Sadly in all too many instances it is a definite case of damned if you do. Autistic parents are damned by being discriminated against and targeted by professionals with no just cause, who make child protection referrals based on the parent’s autism. The police often don’t take autistics reporting crimes seriously, even when they are clear hate crimes. Authorities condone hate crimes against autistics resident in their properties by lack of action. The information on these scenarios is all out there and the child protection side of things is rife. If you are not a parent and are lucky enough to live in a detached property and have the sort of job (if you work) that suits your neurology, then by and large you may get by without immense difficulties. But an autistic lives very close to neighbours and especially if they have children who are are autistic there is a high chance of malice from neighrbours. If the autistic parent’s autistic children have needs that services don’t want to meet and that parent has to battle for them it’s like standing in the firing line.

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  2. Generally I don’t discuss my diagnosis with employers, and authorities unless I know they have some education in the matter or met someone with the condition. Too much prejudice in my country. General disclosure has always been mixed and always will, you can’t control what others believe, only offer to educate.

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  3. I think your decision to come out would probably depend on the sort of people you work with, the kind of job etc. I have a safe, well paid job, something I value highly as it enables a comfortable life. I wouldn’t jeopardise this by risking telling my employers as it is a working class, old fashioned environment where safety is critical and I imagine there would be an over reaction to my announcement, something along the lines of – we can’t have a nutter in such a safety critical role. I have seen this when colleagues have had illnesses like depression and others have done the tapping of their temples or tongue in bottom cheek gestures behind their backs. The thing is, my industry attracts aspies and I can see traits in colleagues but it’s something nobody would ever admit to or talk about.

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  4. This is a cut and paste of a comment I made on a very lovely, supportive friend’s FB – she asked the open question “what do you hide from others and why?”

    Paranthetically, also my ex – he’d framed the relationship failure as being entirely due to my inadequacy whilst he was the “reasonable” one. Diagnosis came after – supported and encouraged by a really beautiful man who accepts me. Ex is passive-aggressive arsehole who couldn’t see anything from anyone else’s viewpoint. Asked not to have the radio on in the morning – highly sensitive to noise at that time of day particularly – it was “normal people have the radio on and I want it on so I’m going to put it on”. He would provoke me into arguments because he could make himself look cleverer than me and my stuttering slow processing. I’m never giving him licence to say “See? Told you the normal one and there’s something wrong with her.”
    I am a completely different person when my ex isn’t provoking me.

    My comment:

    ‘I will never tell my parents about my aspergers diagnosis. I was a “clever” kid and my mother lived this vicariously. She would be on the phone to her friends (having had a drink) boasting and I wanted the ground to swallow me. I refused to sit a public school scholarship test and when she tried to make me I said I was just going to spend 2 hours not writing anything. I was never happy – severely depressed as a teenager – and increasingly unable to communicate my ideas and understanding. People have called me thick although I have an IQ (at age 13) over the test cut-off. If I ever told her I fear the person she thinks I am will vanish in a puff of smoke and it will be all about her. If you’ve read the novel – perversely it’s one of my favourites – she’s basically Miss Jean Brodie plus a drink problem. I actually think she could be autistic herself.’

    It’s hard with the people around me. Easier with people who don’t have the power to upset me in such a very personal way.

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  5. Thank you for this article. My boyfriend has Aspergers, and your comments are very helpful for both of us. Those who judge you judge everyone. They are unhappy people who have not truly evolved to face their own truths, whatever they may be. As an educator, I strive to ensure safe learning environments, but also the understanding and embracing of everyone’s differences. ‘Neuro-typicals’ may think they are normal, but in reality, no one is. I hope one day soon those with autism will be understood and embraced for the amazing individuals they are.

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  6. Do you know any doctors, psychologists or physical therapists which have come out open about their autism? Well, here in Holland, we have a premiere: two GPs have given an interview in a known (medical) magazine with names and pictures, disclosing their diagnoses, their dealings with autism and NT’s and of course, the reason for coming out!
    They are the first official Dutch Doctors with Autism. We are proud!
    signed: a Physical Therapist about to follow their example 🙂

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      1. Yes of course: Here’s the link to the article, in Dutch and only 1/5 of it, but after 8th of February it will be available in full for free:

        https://www.medischcontact.nl/nieuws/laatste-nieuws/artikel/artsen-met-autisme-uit-de-kast.htm

        And here the link to the doctor which started talking about her autism, a year ago anonymously, and since a week openly.

        This is good. She received a lot of positive reactions from other doctors etc. which are also autistic, mainly thanking her for the strength her initiative gives them.

        I was planning to come out as well this very week but the interview with another magazine got cancelled until a later time because it would be too similar for readers of both medical magazines.
        http://www.artsenmetautisme.nl/

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  7. I am struggling with decision to let college admission people at super competitive schools (Ivies) know about my 17 year-old daughter’s diagnosis. It would explain some inconsistencies in the application (like test scores not equal to her very high grades). But I fear it will work against her. Any advice?

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    1. I think having support in college is a necessity for some students. It depends on the school’s culture, the support she is already receiving, and if you think she will need accommodations. I let my son’s college know incase he needs accommodations in the future. I don’t think admissions would be bias based on that; and they have to keep it confidential by law, I believe. It could serve to her advantage. I know a young man who got a full scholarship for his essay on having Aspergers. You could research the campuses by calling the counseling dept. and asking anonymously what services they provide, if they having any autism groups, etc.

      Liked by 1 person

  8. I’ve got Aspergers, and I’m in this teen arts council. I’m struggling a bit talking and sharing thoughts and ideas, and while I know why, I haven’t told anyone about my condition. Would it better to keep it hidden, and let them guess, or should I say something and hope that the understanding makes the meetings more fruitful?

    Great blog, BTW

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    1. That is such a personal question. I support people being proud of being autistic, but at the same time that person must have inner strength and a support system in place to navigate the discrimination that comes with it. and thank you 🙂

      Liked by 1 person

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