Inadvertent Disclosure of Autism

Inadvertent disclosure happens, I was reminded tonight. Because I've been on the road, I've been using several email accounts, usually based on which "webmail" solution was working best. What I forgot was that my Yahoo account was being used primarily for autism mailing lists and groups, not for anything else. So, by using my Yahoo email, the signature with links to this blog was included.

Now, a mailing list that has nothing to do with autism has links to this blog. An interesting question arises, and one I'm not sure how to address — or if it is worth addressing. I do know that at least two people followed the link from my email to the blog, but no idea which two. That does matter, since some people are more understanding than others.

I believe most of the men and women on that list would understand traumatic brain injuries, such as occurred at my birth, along with the other injuries that might (and only might) contribute to the traits categorized as HFA. Other people aren't likely to be so understanding. The notion that an "autistic" person is amongst them might be disconcerting.

Then again, my seizures, palsy, dystrophy, and so on, can and have offended various people. Shaking and trembling bothers some people. My blunt honesty bothers others. Of course, seizures are just plain annoying, even from my perspective. The point is that some people will never appreciate that some of us are not and will never be typical.

During college, I started putting my paralyzed right hand in my pocket about that time, as if I could hide that it didn't work properly. I'd stand with my hands behind me during the national anthem or pledge, so no one could tell I couldn't place my hand over my heart without great effort and pain. I didn't talk about being in a plastic back and body brace for six years. I didn't want anyone to know I was "damaged" in any manner.

Several friends joined the military. I envied them. My medical records? No way was I going to be allowed to serve in any institution that needs men and women in good physical shape. And so, even as the least likely people from high school joined the armed forces, law enforcement, or public safety institutions, I was left to sit and write or program computers.

I still try to hide, though I probably should be over any fear of being rejected as different. In a group of programmers, I want to be another programmer. In a group of writers, I want to be another writer. In a group of autism researchers… I have no idea what I want to be.

Last week I met a lot of brave men and women. And yet, I'm still cowardly when it comes to discussing my complex physical existence. These men and women faced life and death situations, by choice. I've only faced death as an unwilling traveling companion through life.

A few years ago, something called a hemoglobin level dropped dangerously low and I needed two blood transfusions during the Christmas holiday. When I returned to classes, I only told my adviser. I didn't want anyone else to know I had been hospitalized in the ER on Christmas Eve.

I actually taught within a day or two of eye surgeries, necessitated by my base membrane dystrophy. I didn't want anyone to think I couldn't do the job.

In the end, that's not about being strong. It is about being afraid, being a coward. Even now, I'm afraid of what people think of me when they learn I was considered "mentally retarded" by doctors following my birth. I'm afraid of what people will think then they learn I'm a thousand broken pieces, held together by determination and a lot of denial.

Being on the road, I never thought my email could lead to disclosure of my medical issues. Mistakes happen, and this was definitely one of them. Maybe nobody will comment. I have to believe whoever followed the link in my Yahoo signature (which I have since changed) was at least a little surprised.

No comments will allow me to continue pretending no one from the other "communities" in my life knows I'm also The Autistic Me. Denial at work.

Comments

  1. You will always be who you are regardless of any labels that are applied to you.

    People who know you and already accept you as a person should be unchanged by this new information. I say ... SHOULD ... because it's not always possible.

    If I were to find out that someone I know and accept had a history of (for example; molestation), I'd have difficulty controlling/preventing a change of opinion - even if the said act was "a long time ago".

    Obviously being on the spectrum isn't like this because you're not harming anyone. Even so, there are still closed-minded people out there who will not accept that which is different. Losing them as friends is your gain.

    Don't be afraid of the label or disclosure. Achieving against difficult odds is a quality to be admired, not hidden.

    ReplyDelete
  2. I am from Brazil, so I have some difficulty to write in your language, but I must say that I enjoy A LOT your writings.

    ReplyDelete
  3. I had an idea to make quarterly blog entries because I was so dissatisfied with content generated by others on parenting profoundly autistic children.I realize that in fact what I had issue with was they were speaking and their children, some of whom are adults, were not. I don't feel that urge to blog so much because I've found the Autistic Me and other blogs by people who should be heard. And I am so glad I did. The writing is powerful and moving and makes me a more purposeful parent. However you feel, you are, in my eyes, brave.

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  4. I appreciate the kind words people have offered here. Unfortunately, it seems that someone sent links to the blog to people outside the autism community and without the context that this blog reflects my struggles to interpret human interactions — and basic human nature, at times.

    The end result has been an increased sense that I am better off when I don't deal with people or groups outside my safe, familiar little space on this world. Maybe I'm at fault, but I don't intend to redact the thoughts and opinions I post on this blog.

    I don't want to fear interacting with people, but that's definitely an urge I have to resist. Giving in to the fear of what might go wrong, since so often things have ended badly, would be easier.

    People scare me. That's not healthy, but that's how it feels.

    ReplyDelete

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