Update from a former poster on alt.support.autism

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Hello everyone, this is my first time posting to Wrong Planet. Back in 2003 when I was 25, I posted a rather lengthy rant on the newsgroup alt.support.autism about the problems I was having in my life at the time, and whether they were signs of Asperger Syndrome. (If anyone wants to see it, do a search for "Rolteg" in that newsgroup. Sorry my post was a little on the whiny side, but my life was pretty pathetic back then.)

Anyway, I'm now 36, and I've made a few improvements in my life since that time. I have now landed a job as a content writer for a company that makes educational software for schools, and I've worked there for the past ten years. It has been going quite well for the most part; although I had a few struggles in my early years I have continued to improve my work, and my supervisors generally seem to be happy with me. (Plus I get to do much of my work off-site on a laptop, which is good since I'm not a big fan of office buildings.) I also finally moved out of my parents' house at age 27 and have lived in two different apartments since then, and the situation there is quite satisfactory. So far so good.

On the negative side, however, my social life has still been pretty blah for the most part and pretty much devoid of any romance. It's getting rather frustrating for me at this age. However, I have played in two different local bands over the years (I play keyboards), so I've been able to make a few friends that way.

Still, I spend about 70-80% of my time alone. I don't always mind it, but wonder if it might be unhealthy for me.

Regarding my possible AS, I did get an official diagnosis in 2004. However, it was a rather rushed diagnosis, and I've had at least two other psychologists tell me it was either wrong or highly exaggerated.

I first heard about AS from my mother, who read about it in a magazine sometime when I was in my early 20s. After that, she consistently pumped me with information about it and pretty much made it her mission in life to get me diagnosed. So my rushed diagnosis was, it seems, a way for her to say "told you so."

I'm glad I finally moved out of the house. She was driving me crazy. She still does, and has for my entire life. I know it sounds like scapegoating, but I honestly think some of the problems in my life have more to do with the way she brought me up instead of AS.

Anyway, that's where I'm at today. I'm glad I discovered this forum, and I'm eager to hear any feedback.

The vast majority of mental health professionals have little hands-on experience with autism and what they do know, is almost exclusively about autism in children, which presents much differently and more subtly than autism in adults. How many psychologists you talk to is not important, as many of them seem to have their own ego involved - they all want to be smarter and more insightful than the last one you saw and frequently contradict each other out of sheer intellectual narcissism.

What matters is which one of them (if any) had any practical experience in dealing with autistic ADULTS. Qualified psychologists with that specific specialty are extremely rare, but for this diagnosis, theirs are the only opinions that matter.

Adults with autism have had years, even decades to develop coping mechanisms to disguise their autistic behaviors and reactions, usually because they have been criticized, punished and bullied repeatedly for their differences.

For example, eye contact does not come naturally to me, in fact it's so uncomfortable it can be physically distressing at times, but my parents drilled me on it as a child until I learned to fake it well enough to get them off my back. Rocking and leg bouncing were unacceptable stims on a church pew, so my mother gave me pencils and paper and encouraged me to doodle, to get me to sit still. If I'm engaged in a task, you can hardly see the internal anxiety, on the surface.

By the time you're a grown adult, a lot of the autistic behaviors that would have been easily identifiable in a child have been sublimated, covered up, masked by social convention, but the sensory problems and the neurological dysfunction are still there. It takes experience and a keen eye to spot them, but they can still be seen if you know what to look for.

OTOH, it's harder to hide life impairments, like chronic un-or-under-employment, a history of failed personal relationships and chronic social avoidance.

Mothers are in the perfect position to see all the handicaps their children are struggling with, even if the child is oblivious to them, or at least never thinks of themselves as having a definable 'disability.' So your Mom may be able to see you in ways that you cannot see yourself. AS in particular, to people only exposed to it in short episodes, at intervals, can just seem like an odd, quirky personality - but if you live with it and see it all day, every day, it's much easier to recognize as a crippling pathology.

Ironically, some people with AS convince themselves that because they've developed such sophisticated coping mechanisms, that they've overcome their neurological disability and 'cured' themselves, or at least outgrown it. Problem is, in spite of those masking behaviors, we can never know for certain just how well we're fitting in socially, because one of the symptoms of our disorder is the inability to intuit what other people may be thinking. If others seem to accept us, we may think we're golden, while all the time people are winking at each other behind our backs and giggling about how odd we are every time we leave the room.

As far as your original DX being 'rushed,' you don't specify what you mean by 'rushed' - mine was done over a period of a couple days by a psychologist who had not known me personally before. Although he put me through an extensive battery of tests, he and I had no therapeutic history together, but he did have access to my regular therapist's assessments of me, and he had specialized in dealing with autistic adults for many years, so the time period would seem relative and less important than the level of expertise involved.

Of course, in my case there was no convincing necessary, I knew the instant I first read the diagnostic criteria that it was describing me. If he had told me I didn't have AS, I would have thought he was daft and sought another opinion.

Thanks for the feedback. I don't have a copy of the official diagnosis with me, but I do think my mother pressured the psychologist into getting me diagnosed. I seem to remember the written statement having a lot of hyperboles like "extreme," "very poor," etc. which is what my other psychologists disagreed with. (And these other psychologists had actually been dealing with me for a much longer period of time -- the one who diagnosed me saw me ONCE.)

Anyway, I certainly do have *some* of the traits of Asperger Syndrome, but I'm not sure if I have enough of the traits to officially have the condition. Here's a run-down of many of the common traits and how I relate to them:

Intense special interests: Definitely. I've had many different intense interests over my lifetime, some of which remain strong to this day and others which tend to come and go in phases. The earliest one I remember having was astronomy...my family went to a planetarium when I was very young (around Kindergarten or first grade) and since then I wanted to learn everything I could about astronomy, especially the constellations. I'd check out books on constellations from the library and trace the figures onto sheets of paper, labeling them with both their Greek and English names.

Since then, I've had numerous other special interests...some of the main ones have been microbiology, music (especially 70s progressive rock), literature, video games, educational programs on PBS, certain movies, certain women in my life...sometimes these interests stuck in my mind for years, and other times I'd go crazy about them for a few months and then forget about them soon afterward. I can easily watch the same DVD, read the same book, or listen to the same album over and over again for days on end and not get sick of it.

Sensory issues: I did have some of these as a kid, especially with loud noises -- buzzers in particular. The school I attended was regulated to have a fire drill once a month, and I hated the sound of the alarm. It was just a loud, blaring buzzer that scared the hell out of me. If it was a sunny day (and therefore more likely for a drill to occur), I sometimes wouldn't be able to pay attention in class, because I'd be worried that the alarm could go off any minute and scare me. However, once the drill did occur, I would be relieved, knowing that it would be over until the following month.

Another buzzer that always bothered me was the sound of the horn at basketball games. My father was a coach and would sometimes take me along to games, and I'd have to cover my ears whenever time was about to run out on the clock. Eventually I took to wearing ear plugs to games, since I couldn't stand the sound of the buzzer at full volume.

As far as sensory issues involving sight, touch, taste or smell however...I don't think I've had any.

Stimming behaviors: Yeah, I did the hand-flapping thing when I was a kid. Later on when I took up the drums in by school band class, I developed a habit of tapping rhythms on just about any hard surface I could find. I've outgrown most of these habits, although today I still tend to crack my knuckles and twist my fingers around when I'm nervous, and I also pace around my apartment a lot while talking to myself when I'm alone.

Avoiding eye contact: I'm not sure about this one. It's possible I may have when I was younger, but I don't think I do anymore. However, during conversations, I often have to think carefully about what I say before I say it, and it's during this "thinking" period that I tend to look away, and then I bring my eyes back to the person's face when I'm talking. It's possible some people might interpret this "looking away" moment as lack of interest; I'm not sure. But I certainly don't find eye contact "uncomfortable" like some Aspies say they do.

So anyway, those are the main issues with me possibly having AS. As for other things I've read about AS, e.g. lacking empathy, not showing/understanding emotions, not being able to read verbal cues, not understanding sarcasm or figures of speech, etc. etc. -- I don't think those apply to me at all. Someone observing me in a social situation might think differently, but I can't think of any specific times in my life when those issues were a problem.

So, now that you all know what traits I have...how would you assess it?