LIving a Spectrumite Life in an En-Ty World

Some of my peers choose humorous ways to talk about living as a member of the Aspergers/Autism "spectrum", such as John Elder Robison's self-created title as a "Free-range Aspergian". That has a bit of whimsy, of "cuteness" to it, doesn't it? Mr. Robison and Temple Grandin (another noted Autistic/"Spectrumite") even make the point both in their books and their lecture appearances that they wouldn't want to change anything about themselves or their presence "on the spectrum". They're comfortable being who and what they are. They feel of those of us with Autism/Aspergers ... conditions? ... have also been given enough advantages over "Neuro-Typicals" that they prefer life on the spectrum. Or, as I call it, being a "Spectrumite" versus being an "En-Ty".

For me, learning about my own hardwired limitations as a Spectrumite these last couple years has been brutal. Just as brutal as living on that spectrum has been for lo these 58 years. Yes, I finally have some understanding of how and why interpersonal communications and relations for my entire life have been ... "odd". For both myself and everyone around me, as I'm very aware that I do continually cause confusion and discomfort in others. I understand why some people react so strongly, so negatively,  on just being in a room with me. Why so many attempts at simple conversations go so ... uncomfortable. In three sentences or less.

But for all those years before "understanding" attacked, I kept up an optimism that someday, somehow, I'd figure out how to blend in with most people. How to get along, have "normal" conversations at parties and professional meetings; even how to relate with people without seeing the faces of this or that person simply cringe upon seeing me for the first time, and before I've even said a word to them. Because, yes, I've always seen this happen, and yes, it has always hurt. Not everyone reacts to me with such dismay, and yes, I have managed a few friends over the years. But I've not seen my friends and acquaintances receive such reactions ever. I do.

As someone who'd been a Secondary-Education/English Lit major in college, and an acquaintance of people with Autistic/Aspergers kids, I knew of the existence of the "Spectrum". But it was out there, of course, not ... here. Then a few years back, in short succession I had both a 5-year old son and a 26 year old daughter (a grad-school  student in a Lutheran Seminary) diagnosed as "on the spectrum". For him, the diagnosis was high-functioning Autism; for her, Aspergers.

For an involved dad like myself, this was quite a jolt. As a very active parent, I set out to learn the differences, the determining factors, of being "on the spectrum" as opposed to being "normal", with my typically intense ability to focus and absorb. What did this mean in REAL terms, and ... how does one mitigate the known problems? What do you do after the diagnosis?

During those studies, with the focus and passion that (I would soon learn) those of us on that spectrum are so often capable of, and with the firm (if unappreciated!) nudge of a close friend, I came to the inevitable if startlingly uncomfortable conclusion: two of my children, my self, and my late father all existed on that same spectrum. I didn't like the conclusion one little bit. But ... I am an analysis whiz. It is one of the few things I'm hot at. And once I started looking at the possibility of my own 'existence' as a Spectrumite, I couldn't find any missing pieces. All I found was supportive evidence. Solid supportive evidence. A lot of solid, supportive evidence.

When I first mentioned this idea (of my "inclusion") during a meeting with our son's teachers and specialists they had no reaction at all. Or rather, not verbally. They just looked sideways at each other, and ... the meeting moved on. It seemed it had been obvious to them earlier in our 'relationship'. Checking in with a couple of them later ... well, yes ... they had all noticed the rather obvious link, and had even discussed it among themselves long before it had occurred to me.

Would a test be useful, I mused? (Note: I was still looking for an "out", a possibility that my conclusion was wrong.) The response was disheartening: Um ... well ... no, not really, it would mostly be a waste of time and money; I was certainly welcome to go get tested, but ... the direct answer was that while I may not look and seem to most people to be "obviously suffering" from Autism/Aspergers, to someone who works in the field ... I light up the indicator lights all over the board. Bluntly, if this is a game of tag, I'm "it".

As I noted at the beginning, both John Robison Elder and Temple Grandin are comfortable with (or actually prefer) being a Spectrumite to being an En-Ty. At the present time, I can't join them "there". Maybe someday. I've been so aware my whole life of the difficulties I have both in business and personal situations, of some interference with my ability to communicate specific meanings and ideas on a predictable, solid basis to other humans, that finding out that there really is no solution to my problem isn't ... comforting. I've struggled mightily with the loss of hope. I've have many damn rough days and nights.

I've had to realize that for all it's prowess and capabilities, my brain doesn't use language quite like any of the En-Ty's I know or work with. Not even my wife and closest friends. This limits everything I try to do to such an extent that at times I wonder why I even bother trying anything. Having learned it's a permanent hard-wiring problem, I keep looking for the equivalent of a software "patch". Some way to actually get my thoughts out "there" such that others can understand the depth and width of what I try to communicate.

I'm not having any luck. Knowing the cause hasn't provided (at least yet) any assistance at amelioration. There has been a ton of new emotional baggage to work through, not least of which is the realization that ... this is permanent. There may be no fix for my communication/interpersonal struggles.

The supposed definition of insanity is trying the same action over and over and expecting a different outcome. But all I've got left is to keep trying to improve my ability to communicate with the En-Ty world I live in, and hope that eventually I'll find a way to maybe double the percentage of accurate  'content' I manage to get across. Someday, someway, I'll maybe hit a 4% -transmission of ideas to someone. It ain't much ... but it would be better than I'm getting now. It would be ... something.

It would bring so much hope back ...