A Mid-Forties Butch Aspie
Makes Her Way
(blog originally kept at WrongPlanet.net)
The Road from Here to There - Part 9
Assessment Conclusion -
The Fourth Appointment
Composed on November 29, 2011
Warning: The following post is both lengthy and, in some places, rather unpleasant. It's not the end of the world, but I'll be talking about stuff that was tough to deal with. If you're going to read it, please try to find some means of comfort. Also, if you read as far as the difficult stuff, please continue reading all the way through to the end, so that you get the part about how I'm coping with it. Don't be left hanging at the sad, frustrating, scary part. Thanks!
By bedtime last night, I was feeling pretty tense, looking ahead to going in today to learn the results of my assessment. I imagined encountering one of two scenarios.
The psychologist smilingly reassures me that, although he's certain my distress over what might be going on with me is real, there's actually nothing seriously wrong with me. He can find no evidence of any developmental issues, and he's sure that, with some medication for anxiety, and maybe depression, I'll be just fine.
Alternately, he's concerned because he's aware that I want a diagnosis of some form of autism, and he tries to explain to me why this is not healthy. He then reiterates that there's nothing wrong with me except that I need medication for anxiety and/or depression, and he strongly recommends that I seek therapy to address my apparent need to think I have a neurological condition.
My ever-supportive girlfriend, upon listening to my concerns, asked me to consider two more possibilities.
I actually get diagnosed with Asperger's.
I'm told that, although I don't actually fall within the parameters of an Asperger's diagnosis, I have at least some of the traits strongly enough to come close. This would still be a meaningful and useful result.
Of course, she wasn't just trying to make me feel better. She knows me, and she's been educating herself a bit already, so she was very right to suggest that.
So, I prepared this little preamble this morning, before going in, feeling reasonably willing to concede that things really could go either way. In fact, anything could happen. Um, a giant pumpkin pie could suddenly drop down from above, ending all need to discover anything. Still, the remaining time continued to be an uneasy wait. On the one hand, I knew that, if there's nothing wrong with you, and you want there to be something wrong with you, well, then, there's kind of something wrong with you. On the other hand, if you nail an explanation of your troubles and then get that explanation confirmed, that's a big relief. It's not anything like what parents feel when their child has something going on that they never expected and then they're told it's caused by something they may never even have heard of before.
Keeping that all in mind, here's what actually happened...
To start with, the report hadn't been typed up yet. The psychologist said he thought it was because of the Thanksgiving holiday. He had to work from his notes in order to tell me what he'd decided.
The result? He saw no indication, whatsoever, of any sign of any form of autism at all. Nothing like it. Not even close. From the moment he said it, I wanted to leave. But I couldn't. There was no smiling on the part of either one of us. The good news is that he didn't think I needed medication for anything, and he didn't lecture me about appearing to have an unhealthy need to be diagnosed with something. He did, however, want to know why I would want to have something like that wrong with me, and how I thought that a diagnosis would help me. Nothing I said about how it made my life make sense, however, made any difference. I guess I must've just seemed stubborn or something. His opinion is that I'm an underachiever, for an unknown reason; that the teacher I told him (during the first appointment) had said, when I was in grade school, that I seem to deliberately try to be different, just for the sake of being different, was correct; that my troubles are really the result of anxiety and depression; that, with some counseling, I could be more productive and feel more useful; that my sense of not fitting in or belonging is the result not just of my being gay but of my being a cross-dresser (the cross-dressing part being a thing I do deliberately and that I could change, unlike the example he gave of the birth mark on his face, which he was born with); and that my fibromyalgia (which he also knew about from the beginning) seems not to be very limiting for me (though he admitted he couldn't really tell and might be wrong about it). He also noted that I have an above average IQ, with my greatest difficulty being in the area of my working memory, with number spreads. I got my best score in verbal ability. He also said I was above average in the questionnaire my girlfriend filled out about my day-to-day living skills and abilities (you know, the whole bathing, dressing myself thing).
I'm confused. Although he explained it to me, I'm still not clear on how he made his decision that I'm not anywhere on the spectrum. I'm not even sure how anyone could tell from such limited contact with me. It seems like some kind of convoluted hocus-pocus. One might expect he's hiding a set of divining rods in his pocket or something. He reminded me he deals with people with autism all the time, so I guess I wasn't supposed to argue with him. He said people with autism don't make eye contact. Until today, when I stared him in the eye, because I somehow couldn't seem to help it, I'd barely looked him in the eye at all, for the same reason. I pointed out that I've learned to do a lot of masking and compensating, and he said people with autism can't learn to change. I mentioned that I felt as though, from all the books, posting with people online, and (maybe I didn't get this last one out) the couple of people I know who have Asperger's, it was an explanation that made my life make sense. This apparently meant nothing to him, so he didn't comment on it at all. No words about feeling like I fit in with such folk or about not finding them strange, the way others do, made it out of my mouth. I also never got to a point where I could bring up any of my repetitive physical movements, which I suspect are stimming. I suppose he would likely have told me he considered them to be nothing more than nervous habits. He stated that autistics have obsessions, then moved on without any discussion about it at all, as though it were just one more thing he was throwing out there. And how would he know anything about my fibromyalgia, except that I had it? That's not his area of expertise, and he did nothing to evaluate its effect on me and my life.
You know, saying people with Asperger's just plain can't do the things he used as examples, and that I can't have Asperger's because I can do them, is like saying I can't have fibromyalgia (or can't have it to a disabling degree), because people with fibromyalgia can't take 50 lbs. of dog food and dump it from the bag into a barrel. Sure they can. Personally, I can do it with a feed scooper! But it doesn't matter how it gets done, anyway, because what determines the presence and severity of fibromyalgia isn't how strong your body is or how much energy it has in a given moment. It's how your body feels over time - which includes things such as "tender points" or "trigger points", flare-ups of pain, and bouts of fatigue. Ability to empty a dog food bag into a barrel on a given day, even by actually lifting and pouring it, isn't a determining factor. It really seems to me that the psychologist looked for signs of autism in me in one way, and I looked in a totally different way. And I think this is the only shot I get, given that I doubt Medicaid will pay for a second opinion (which might not be any better anyway, if the process runs the same and the person performing it has the same bias), so this guy's report is the one that stands.
When I left, I felt devastated. This was awful. I was so shocked I almost didn't want to drive. It was just a short trip to meet up with my girlfriend, though. Had it not been for her, I think I might be in a ditch somewhere by now. (Oh, is that evidence I can't have Asperger's? The psychologist did say people with autism can't connect with other people!) We only had a few minutes before she had to go back to work. I explained what had happened. I told her how lost and scared I felt. Then we agreed on some things.
First of all, my girlfriend knows me better than the psychologist does. She agrees that this evaluation didn't seem to consist of sufficient contact or gathering of information. She also sees in me the traits I see in myself - the ones that led me down the path to assessment in the first place. And she's met my father, so she knows what we're talking about when my sisters and I discuss him. It's because of my similarities to him that I got started with this thing, because my younger sister said she thought he might be mildly autistic. She's a registered nurse who's been furthering her education and understanding, both through reading and by interacting with families who have autistic members. I know that doesn't qualify her to make a diagnosis, but she's not ignorant about the subject.
Second, my girlfriend and I have decided it may be best to approach life as though I'd gotten the diagnosis, because this it what not only makes my life make sense but also helps me find ways to deal with the things I find difficult or challenging and work around the things I can't manage.
Third, we think I might benefit from more face-to-face encounters with people we know or might meet who have Asperger's and who are willing and able to socialize. This could involve some online searching around to see where we might find more people I could get to know. Either I'll identify with them or I won't, but I know I feel a certain commonality with at least one guy I know already. I've seen for myself, and heard from others, that he experiences the same social awkwardness with which I'm familiar, and he does the eye-contact-in-a-group "turn giving" thing that I've intentionally adopted as a strategy for conversing with multiple people. At the same time, however, you wouldn't necessarily know he had Asperger's (or anything at all causing him difficulty) unless either he told you or you knew him well enough to find out. I'll have to see what else I discover as I learn more about people with Asperger's in person. I've got to step up and take care of this, because I can see now that online exchanges are not enough.
I hope my girlfriend will not be overstressed by all this or worry that it makes me too dependent on her. She's been wonderful, and I don't want to scare her with how hard this has been for me, though I seem to be completely unable to hide any of my feelings about anything from anyone (even if it also seems people don't always accurately identify exactly what feeling they're seeing). We have a house guest coming to stay with us in the near future, and it'll be stressful enough to manage my reaction to having another person present all the time in our space, watching the house get gradually disarranged, and having my daily routines disrupted. It went poorly for me during her first couple of visits with us (though we were able to keep her from being troubled by it until near the end of the second time), and it really threatened our relationship. We've been talking about how to make the experience more manageable, and I hope it works. I like our friend, she's really important to my girlfriend, we rarely get to see her (she's from a foreign country and only visits for a couple of months, once or twice a year), and she needs to feel comfortable wherever she stays. The current plan is to divide our friend's stay between having us host her and having her stay with the other friends through whom we met her, as before, but to split our part of the time so that she's with us a couple of weeks, then with them for a month, then with us a couple more weeks. That breaks up the visit so that I can collect myself in the middle and get the house back in order. The latest we've heard is that we may only have her for two weeks total anyway. She may already have plans in mind for dividing her stay amongst even more of her friends. So, this may be a little easier for me than I thought, though it will be tougher on my girlfriend to see less of out friend, and I'm truly sorry about that.
I'm going to try to keep in mind that the psychologist may be very "old school", as my girlfriend suggested when we met after the appointment. Here, on Wrong Planet, it's been said that there have been some noteworthy limitations to the understanding of autism. Many who have studied and worked in the field may have made assumptions based on behaviors exhibited by children who were not able to speak for themselves at the time they were being observed and therefore were not able to explain those behaviors for themselves. Consequently, guesses may have been made that may have had little bearing on reality, such as the reason for an apparent lack of interest in some kind of event that affected others or the motivation for engaging in what seemed to others to be a strange action. I'm 43, female, gay, and butch. If, indeed, I do have Asperger's, it's gone officially, professionally unrecognized my whole life. This is likely partly because those who have it can be so different from each other; partly because mine is probably a relatively mild case, putting me far into that one end of the spectrum; partly because my situation growing up really compelled me to make the best possible effort to learn certain things in particular, in order to survive my specific circumstances (which is actually not that unusual a thing for anyone); partly because of unexpected sources of help and support that I encountered along the way; and partly because what is now considered to be the scope of the autism spectrum has only been broadened in more recent years. I don't think the psychologist knows what Asperger's would look like in such a person. But here I am.
And soon I'll be back in the safety of my living room tent: snugged up on the couch, hiding out under the drape of the fuzzy blanket, enjoying the softness and warmth of my bathrobe, with the added warmth of my little blanket, reading some more out of my library book. Microfiber is a good thing, and I've surrounded myself with lots of it, from couch cover to tent cover to robe. My girlfriend can come in and share when she gets home, if she likes. We can read together. Then maybe I'll feel better.
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