A Mid-Forties Butch Aspie
Makes Her Way
(blog originally kept at WrongPlanet.net)
The Road from Here to There - Part 10
Assessment Aftermath -
The Morning After
Composed on November 30, 2011
I woke up this morning with two things going on in my head: a headache and stuff on my mind.
As I lay in bed, I recalled that, during the assessment process, only the first appointment, which was half an hour long (as they all were), was spent with the psychologist asking me anything personal. It seemed that a lot of what he asked me that day was about where I lived, if I knew where I was and why I was there, and similar sorts of things. The personal stuff, such as whether I'm close with my family and why I thought I might have some form of autism, was very general and went by very quickly, so that there was no opportunity for elaboration and no in-depth probing into my concern. I don't feel that I expressed myself very well, and it didn't seem to matter, given the rush to get through it all.
At no time was I given a test anything like the ones posted here on Wrong Planet, designed specifically to look for indicators of autism, nor was I asked any questions similar to the ones found on those tests. The only test I took was the IQ test, which took up the second and third appointments. The fourth appointment was the summation, so no evaluation took place at that time. And that was it.
Was it supposed to go that way?
After thinking about that, it occurred to me to wonder if something had gone wrong. Before being given an appointment, I was required to have my medical records sent for review. Might my prior diagnoses of anxiety, depression, and PTSD have prevented another diagnosis from being made? What about my mother's anger issues, which I'd mentioned during the first appointment? Was that considered to support the previous diagnoses and, therefore, to preclude a new one?
When I was little, my parents took me to a child psychologist who decided my whole problem in life was that I was experiencing sibling rivalry. This was because he'd asked me to draw a picture of a happy time with my family, and I'd added my baby sister as an afterthought. But he never asked me why, so I didn't know it was an issue. If he'd inquired, I could've truthfully told him that it was because I'd drawn a scene in which I realized she hadn't been present, so I decided to include her anyway, because I wanted to show all of us. I wasn't trying to leave her out and then grudgingly admitting she had to be there. I wanted to make her a part of something, because she belonged, even though she'd actually been in her crib at the time of the scene I'd depicted. So, I put her in my mother's arms.
My mother told me I'd seen this guy twice, though I only remember going once. I only remember drawing the picture and that he'd had a bunch of toys he wouldn't let me play with. My mother said that, when I didn't want to go back, they didn't make me. My parents were apparently as unimpressed with him as I was.
So, what happened this time? Was the psychologist's mind made up before I even went in? Did the lack of severity of my case and my ability to compensate over the years make me seem so different from the clients in need of ongoing services over there at Easter Seals that he couldn't see past the differences far enough to even want to look for similarities? Was it some kind of professional courtesy towards the psychologist I saw only once, when I was about 21, who diagnosed me with General Anxiety Disorder and PTSD? Did he not want to contradict him? I'm sure that report must've been in with the other stuff sent when my medical records were requested. (That psychologist noted back then my "mannish" style of dress, suggesting in his report that I was confused about my gender. And what did this one at Easter Seals do? He said he thought my feelings of not belonging during my life were brought about by my deliberately being different by cross-dressing. Gee, do you suppose he should've asked if my feeling persists even when I'm with other women who dress the way I do?)
If my diagnosis was, in fact, pretty much a foregone conclusion, then something did, indeed, go very wrong. In that event, I was not evaluated properly. So, here's what I intend to do at this time. I'm going to continue to participate in the forums at Wrong Planet. I'm going to leave my status as it is, continuing to reflect that the matter is still unresolved. In the "General Autism Discussion" forum, I'm going to post to let others know what's happened, pointing them to my blog entries, to see what they think and if anyone else has had a similar experience. And I think I might have one or two people I can get in touch with to discuss what's happened. One of them is a teacher from my high school that I saw recently. I trust him enough, and he knows enough about psychology, that I think I can get into this with him. That might help.
I've read about the things required for diagnosis, and I think I fit the description well enough: I've had struggles with eye contact, reading other people, and pacing conversations properly (speaking at appropriate times and for appropriate lengths). I didn't interact well with kids my own age when I was growing up and spent many hours upon hours playing alone, which I generally preferred. (Although it wouldn't be true to say I never had any friends, I generally went at least somewhat outside my age group. I also usually carried out my friendships "lightly", which is to say, with little exception, there was not any real consistency or great frequency regarding playing with any particular kid. Even the exceptions didn't last all that long.) My mother noted that I seemed self-centered and insensitive to others as a child (though I think at least part of that was because I couldn't always understand other people, not because I didn't care about them, part of it was that I was just really self-contained and somewhat independent of a certain amount of need for social outlet, and part of it was because I got somewhat preoccupied with things like my pain from being bullied). I had to learn to respond to the interests and feelings of others, not just blurt out things that interested me but that were unrelated to things they said. My areas of interest may be singular or multiple (in small number) at any given time, but I do really delve in. (This may not always be noticed, because my usual practice is not to collect and memorize facts and figures. But I do get very focused, and then it dominates my time and conversations unless I really make myself not behave that way, which I've learned to do better over time. My poor girlfriend, however, gets the "less abridged", shall we say, version of my conversation. Right now, it's all about Asperger's, of course!) I also do repetitive motions that have no apparent practical use. I think this is what I've read is called stimming. I rub the same spot on my teeth with my tongue. This is almost constant. I also have some shoulder movements I can't seem not to do sometimes. (I originally thought this was because I felt uncomfortable with something about my clothes or a seat belt, but I've since discovered that I also do it when I'm at home and not dressed.) When I was a teenager, I remember how my family pressed me to stop jerking my head to the side to get my bangs out of my way. I repeated this movement so many times in a row that they said they were concerned I would hurt my neck. I succeeded in suppressing that one pretty quickly, but the tendency to do one thing or another never went away. I'm also sensitive to certain kinds of physical sensations, sounds, and light (though at least some of this can also be attributed to fibromyalgia). I'm very particular about being touched, as some of the people around me can attest. I can generally mask that one, for the sake of social acceptability, but when it's too much, it shows. I can get overwhelmed by things that don't seem to bother other people, whether they are sensations, activity around me, or my own feelings (though I've learned both to deal with it and to hide when I'm not dealing with it better now than I used to). I sometimes have trouble processing information. I was not able to tell the psychologist any of this stuff, except to mention that thing I do with my tongue (which I mentioned at the third appointment, I think). He immediately dismissed that, as I noted in my blog entry about that day.
I also keep thinking and thinking about how the things even people who've been diagnosed with Asperger's as children say about themselves as adults are sometimes so different from what professionals have guessed about them from their observations. It's the reasons behind things, the variety of modes of expression of the characteristics, and the variation in which of the traits appear in any particular individual and which don't that I've had on my mind. It doesn't make any sense to me that so many professionals are apparently so disinterested in what Aspergians have to say about themselves. How can they really understand anything if they're so unwilling to consult the people who have it about how they experience it?
Well, I've taken quite a journey so far, but it seems I still have a long road ahead of me. This feels like a lot to deal with. But I refuse to accept things as they currently are, given the fact that it's not just that I don't like the psychologist's conclusion but that it really does seem I wasn't evaluated properly. There have been lots of things in life that I haven't liked but that I've lived with anyway. This is different. It really does seem that something has gone very wrong. Just as it was back when I was nervous about the approach of my assessment and considering backing out, as my girlfriend put it, I can't seem to let it go.
To view my Wrong Planet discussion thread on this topic, please go here:
[Poll] Something Went Wrong with My Assessment, I Think
The MindWithoutWalls Asperger's Syndrome Assessment Blog:
A Mid-Forties Butch Aspie Makes Her Way
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