Insights I have had in the past few days:
1. I really can’t skip the iron pills.
I thought I was in the clear because the month that Kitty was here was like some unending meat-fest, in terms of the relative level of meat in my diet. I normally don’t get a lot of meat because it’s expensive (I only buy free-range, hormone free stuff if I’m doing the cooking), and there’s that whole raw meat thing which I’m not down with. I eat a lot of vegetable proteins (mostly soy) and cheese and yogurt and hope for the best, although of late my yogurt consumption hasn’t been dairy, either. Of course, this is illogical, because the body continually uses its stores of iron and needs them to be replaced.
My iron levels have been ridiculously low in the past, something I first discovered as a teen when I started to give blood–and got rejected about every other time for too-low iron. I’ve had this followed up by doctors intermittently (with lab work) and the usual reccomendation is to take a ridiculous amount of iron pills and get on with things. The thing is, iron pills make living unpleasant–they cause my already unpleasant stomach upsets to become worse. So I avoid taking them as often as I probably ought to and rely on instinct (ha) and/or Kitty to tell me when I’m due for a pill.
So I’ve had this headache for about 2 weeks. I’ve felt stuffy, dizzy, tired–very tired. It’s been really bad, but not migrainous, which has been a confusion and a relief. The extreme visual side effects of my topamax (for the migraines, a small dose) have been out of control to the point that I’ve been seriously concerned that I’m beginning to have occipital seizures. It finally occured to me that it’d been about two months since my last iron pill, and the amount of meat I ate while Kitty was here not withstanding, that is an awfully long time.
The side effects were the first to drop away, back to their usual level of obnoxiousness. Then the tireness, and then the stuffiness, and last the headache (it’s still there a little bit). Ah, anemia. Lesson learned: remember the things that I already have, rather than being afraid of things I might have in some horrible alternate universe.
2. On the subject of Things I Have vs Things I Don’t But Could In An Alternate Universe, I got the results (finally) from the first clinician I saw. My overall feeling after having read his report is that I was swindled out of a large sum of money for very little effort on his part, with a dose of sexism and perhaps a side of pet theory.
What I should make clear before I go on is that this psychologist has social anxiety himself, and made a point to tell me this a number of times during our two meetings.
So, according to him (although not my current therapist, who agrees with my self-assessed aspieness, and with whom I will finally be discussing these results this coming week), I have a social anxiety disorder and avoidant personality. The report is like some strange hybrid of what really happened and what I think he wanted to happen in our meetings–he gave a lot more weight to answers that were not weighted by me, and did not listen to a great deal of what I told him. The fact that I meet all criteria for AS was roundly ignored, although he was “kind” enough to leave a “rule out PDD” in my Axis I. The fact that he did not care to specify which speaks volumes as to his skill.
The thing is, I have this handy internet right here at my fingertips, and have accessed the guidelines for social anxiety disorder (social phobia–which should have been given a specification, even if it was only ‘generalized’) and avoidant personality disorder. As far as I am aware, I do not meet the criteria for either of these categories.
Now, I might meet one criteria in SA (point D); I do tend to avoid social interactions in the scope that I know this psychologist was discussing (parties). This is because parties are often loud, with new people, and there’s just a lot going on sensory-wise. I don’t dislike them once I’m there, usually, and I attended parties on a pretty regular basis in Melbourne. I go out to eat, to the store, to work, to see plays and movies, all without problems. I believe that he interpreted my dislike of other people because I don’t understand their intentions all of the time for fear, and this is a problem within his own nature–projecting his own diagnosis–not a problem with me. I will concede to point 6 (the first part–I think I am often a bit inept!) in the avoidant list.
So he’s given me this inaccurate set of diagnoses, ignored my accurate self-diagnosis, and I’m trying to work out why. The best I can come up with is this: I am a girl. I am very smart, and I am largely self-sufficient. I was on my best behaviour (no stims, no tip-toes, no meltdowns, compliant and test-taking and omg I love tests it is a miracle this blog is not overrun with internet quiz memes yet). I have a girlfriend, which explicitly counted against me in his final review (queers and people in relationships can’t be on the spectrum now–I guess I’ll have to tell the researcher I’m helping out via the GRASP newsletter). He had a medical view of autism and the spectrum, and was not open to neurodiversity as a concept, nor to the social model of autism.
He did not ask, or wish to know about, my Theory of Mind, my executive function. I was “too open to new experiences” to be really aspie (because one of the tests they gave asked if I liked to travel–in my opinion, an aspie dream of planning and maps and public transport and endless flight details).
He asked, at one point, if I held grudges. “Most autistics do, I find.” I stammered a no, because it’s rude to hold grudges; later I realized that I do, profoundly. I still hate the kid who forged my signature on a prank love letter in 7th grade and slipped it into the locker of another boy. I lost one of my best friends over a grudge because she wouldn’t apologize for being cruel. I wonder if he would find me more autistic knowing that this envelope has only added fuel to an already well-burning grudge, or if he would just accuse me of faking?
So, I’ve had this here blog thing less than a week, and my mom found it. I’m not sure if she’s still reading it, or if it was a one-time read-through, revlusion/horror/sadness sort of deal, because I haven’t posted since she told me–for fuck’s sake, I’d barely had a chance to make a dent in my own bandwidth yet anyway. (Though I have gotten spammed. Twice.)
The funny thing is, I was brainstorming a post on how to approach her on the subject–my last few attempts have been rebuffed, so I wasn’t feeling so great about it–of Asperger’s, and me, and my seeing a professional. I was even considering a series of posts about the process of coming out aspie, and how it’s similar, and not, to coming out queer (something I have experience with already), and how other adults on the spectrum I admire have handled it.
This is not the first time my mom has found me on the intarwebs, nor is it the first time I’ve felt mildly violated by her actions; when pressed to tell me how she finds me, she hasn’t ever given a satisfactory answer, and claims she just likes to know what I’m up to. For a while, I left comments directed TO her in posts I made on various Gawker Media sites (mostly Jez), knowing she might be lurking and reading, and knowing she knew this made me profoundly uncomfortable. I was under the impression that this had ended after she yelled at me a few months ago for “saying mean things about her on the internet” (which, I’m sorry to say, is the perogative of all children with internet access), and my telling her to back off. However, one of the only places I can think of that she might have gotten this link would be my profile on any of the Gawker Media sites, which means she’s still checking up on me. I am trying not to be upset over that part, because she has said that she is hurt that I didn’t tell her, feels shut out, and feels like I might blame her for all of this.
So. I know my mom, and I know now, for sure, that she probably would not stop reading even if I explicitly asked her not to–and I haven’t, yet. I must assume that she is reading.
Asperger’s syndrome is a neurological disorder; it is probably genetic (there are a ton of genes that are potentially causal for any given person, and they may be de novo or inherited mutations) with some posssibility of influence from outside sources like the uterine environment; it is non-degenerative. It is currently diagnosed at a rate of 10 boys to every 1 girl, while there are 4 boys for every 1 girl diagnosed across the whole autism spectrum; this is, in my opinion, probably due to girls with Asperger’s being capable enough of masking their symptoms that they never seek out help or are brought in for help by their parents (girls are socialized towards many aspie traits–introversion in a teenage girl may be less worrying than in a teenage boy–and their interests are often more socially normative, even if the intensity is not). With support from family and friends, there is no reason a person with Asperger’s can’t have the same sort of achievements anyone else can–if that’s what he or she wants. My goals have not changed: I still intend to do my premeds, go to med school, and have kids.
By my own assessment, and the agreement of the therapist, I am a very borderline case. There is a grey area where the most socially functional persons on the autism spectrum meet the least socially functional persons NOT on the spectrum, where a diagnosis is very difficult to make. Ultimately, though, I know me better than anyone else (actually, Kit may know me just as well), and I appreciate her trust in my confidence on which side of the line I fall. It was a difficult conclusion, the work of 2 years of personal searching, to make, and meant a lot to me to be trusted, as the first therapist I saw for this very much did not trust me.
My goals are the same, it’s not degenerative, it’s an extremely mild case…why did I seek out confirmation, then? Because I want access to support groups, although currently the closest one that isn’t for parents of little kids is in Richmond. Because I enjoy being told I’m right, a feeling my mother should be intimately familiar with. Because I want help with my preference for nothing changing, and to get therapy paid for by insurance means having some sort of diagnosis on my paperwork–and if it’s going to be A diagnosis, I want it to be the RIGHT one.
To start, it is Prosper’s 3 month birthday according to my totally arbitrary date I gave him by counting down from how old the shelter thought he was when I adopted him and then fudging the number a bit so his birthday coincides with the date most commonly celebrated as Shakespeare’s birthday. The kitten doesn’t speak a lot of English yet–mostly his name–but I guess he knew something was up when he got two new toys (a kitten version of a kong, a dog chewing toy, which I’m hoping will save my arms from further destruction, and one of his jingle toys tied with elastic to the underside of my loft bed) last night, and a few treats for no good reason this morning. The elastic toy is really helping his jumping skills, of which he has none.
The idea for the toys came after I had my first meeting with my new therapist yesterday afternoon, a meeting that went so well I ended up spending far more money on my kitten than I had really intended to because I was still pleasantly letting the few words we’d said tumble about my head.
I hadn’t expected something quite along those lines, after nearly two months of struggling with a psychologist who was not a good fit. I came in to him alone, sad, frustrated, knowing full well that I have Asperger’s syndrome and wanting confirmation and someone to help me come up with coping strategies, to help me become less defeatist and self-isolating, to help me stop making patterns in my friends’ interactions with me that aren’t true. I was coming from a perspective of neurodiversity, and with some perspective I think he was coming from the view that any ASD is inherently disabling. The patients he normally saw with Asperger’s, from comments he had made, must be men more profoundly affected than I, and while it may not be fair, I’m not certain that either intellectual curiosity or professionalism had ever prompted him to ever pick up even the simplest Attwood book for assistance; he expected my behaviours and, later, test scores to match these men, and while they might have a similar pattern, I’m a 24 year old woman, extremely intelligent, who self-diagnosed because my masking skills are good enough to have escaped evaluation previously. He didn’t want to give me a diagnosis of Asperger’s as he felt it would limit me; I felt it could only help me grow. We could not see eye to eye–I was, in fact, so frustrated with him I could not make eye contact at all. We did not part on good terms and I cried with Kitty for a while in the car.
The reccomendation for this new therapist came from the old, which put me on edge, but I had liked him as a person, just not his ideas or attitude. She was kind, polite, and read my written summary of myself and why I was there–I so greatly prefer written words to spoken ones I had prepared a five page document, including the DSM criteria for Asperger’s and how I fit them–while I filled out the forms I needed to do for her, answering questions as best I could whenever they came up.
It was the first therapy session I can remember having that I enjoyed. I think I probably enjoyed the ones I had as a small child, playing with toys while being reassured that some change was necessary, like the birth of my brother, but I can’t recall those with any clarity. So it is with great relief that I have found this lady, even if I must drive half an hour each way to see her, and I will see her again next Tuesday.
One of the last things she said to me, which has been on an echolalic repeat in my head–and mouth, sometimes spilling over into the air–was so calming, so reassuring, perhaps what many an adult aspie looking for a diagnosis and some help needs to hear I shall repeat it here: “This is just amazing, that you’ve compiled all this together, done all of this research, and self-diagnosed like this. I’ve never seen anything like it before, and I’m glad to be the person to help you however you need.”
My name is Ali, though sometimes it's Eliot.
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