Inadvertent Disclosure of Autism
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.