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With skills beyond my usual expectations, I woke myself at the godawful hour of noon today (I had been asleep since around 8:30, because Prosper was a little beast and ended up being Bathroom Cat (1)) and made it over to work eleven hours before I was due. There was a presentation scheduled on autism and assistive technology, and I was geared up to do some heavy correcting (my experience with the clinical staff here is that they wouldn’t know an autistic child if one stood in front of them had they not come in pre-labelled).

The presentation was given by two nice ladies from a service called TTAC (training and technical assistance center). They were genuinely pro-neurodiversity (though I’m not sure they were familiar with the word–they work with teachers, mostly, on the fringes of a lot of different disabilities without being immersed in any one community) and super heavy on the people first language (a very big problem around here and one that is very easy to accidentally fall into).

Like every seminar ever since the history of seminars, we all had to say who we were, and where we worked (there were a couple of people from outside the centre). I had to go first (ugh), and chose to disclose my place on the spectrum. The direct care staff present all knew anyway, so I couldn’t see any real harm and felt it might lend weight to any corrections or contributions I might make. To my surprise, I had no real corrections to make at all! These ladies were on top of it and very well prepared, and asked for my imput along the whole presentation, repeatedly praising me as the perfect resource for this centre. Quite a lot of awesome validation!

One small point I mentioned during a short discussion of sensory issues facing those on the spectrum was the area of touch. There are a handful of people who are allowed to touch me without warning, though I’ve probably only explicitly talked about it with half of them. And I generally don’t get too upset if a little kid grabs without warning, either. But other adults and older kids to teens? Ugh. I explained that my sense of touch, like many on the spectrum, is both hypo- and hyper-sensitive. I love deep pressure (at the expensive of Kitty’s arms via backrubs) and startle greatly when touched unexpectedly. This is actually a lot better than it was before Melbourne–public transport sort of forces one to suck it up. But a lot of the staff and teachers here will touch kids who are on the spectrum without warning, and then be surprised when there is a meltdown–or a delayed meltdown. It can take minutes, even hours, for some children to process what happened and only then will they react. I’ve been trying to convince my coworkers to quit touching kids for a while, so I hope with the weight of outside help they’ll start to listen. One of the speakers seemed really profoundly moved by such a simple thing.

I spoke with them both afterwards, and we talked about things they might also include like synesthetic responses and how nonverbal children may not be able to communicate that they are having multi-sensory experiences and how that can influence behaviours (I suspect and have no way to test that a lot of visual stims might produce synaesthetic responses, making them waaaay more fun), or how girls are quite probably underdiagnosed and may be caught in an NVLD diagnosis (a post I still need to write), or how people first language is all well and good, but if a self-advocate chooses to use the adjective you should honour that. I called myself and the kids I worked with autistic, not people with autism, and explained that it is partially a taking-back of the word, and partially the formation of a community for those on the spectrum. We want the choice to self-label or not, to choose to be the face of a disability or not. Forcing people first language on those who want to identify by their label is just as unnecessary and potentially harmful as refusing to use it at all. As I explained, and I think I was understood, you should take your cues from the person.

My, um, assistive tech is a planner, my computers, a notebook, and Kitty. I’m not sure she counts, but I think she should–she remembers things for me (I do the same for her), helps keep me organized, reminds me when I need to do certain tasks. The planner helps me week to week to remember my migraine symptoms and appointments. The notebook helps me remember fleeting thoughts (so, so many are fleeting!). The computers allow me to speak at my best, without pauses for thought or silly pronoun or word-order issues like when I’m comfortable in person (plus they have spell check, which is like the visual equivalent of making sure you don’t pronounce a difficult word wrong).

1. Bathroom Cat is what happens when Prosper is being naughty (chewing on the blinds, usually, or trying to scale the fridge, or trying to sit on top of the window) and has to spend a while in the bathroom. His litter, food, and water are all in there, along with a toy or two that I can scoop up as I deposit him there while spouting off admonishments about how I just want to sleep why are you such a horrible bastard cat you are clearly half-breed basement cat spawn I am going to sleep and you are going to think about what you’ve done! Within about three hours he begins the endless whiney mewling to be let out, but those first two are really nice.

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And I’m sorry.

After months of thinking about it, I emailed Craig, my dissertation supervisor. I admitted I have completely stalled on my topic and can no longer write it. I explained about Asperger’s and how I’ve lost my passion for IR–the linguistics of politics were a rather obsessive passion at the time I was setting my topic, but I’ve reached the point that I feel like I’ve exhausted the source material. I’m bored. I have all the information I need to write the paper, but it’s so tedious to do that I can’t possibly bother.

I asked to change topics to one related to international health or even autism specifically, and he’s open to the idea provided I can ground it in IR theory. So I’m now trying to work out just how best to do that, but enthusiastic for the first time.

He also suggested I could take the Graduate Diploma (a degree that doesn’t have wide application in the US but is common in Australia)–I’ve done the required 8 classes to do so. If I can take that degree and have a completed degree and finish the paper and then take the MA, then I’m all for it. If I have to do the one or the other, I’m less sure about my choice. It would be really nice to have a completed degree on paper, and I don’t begrudge myself the loans to live in Melbourne the extra semester at all. That was money well spent. But that MA has been hovering just out of reach for almost two years now and I’d be disappointed in myself if I didn’t try to take it. Besides which, this MA (while probably not helping me get into med school anywhere) would be a potentially good thing to have if I get into epidemiology at all.

And then we talked about Jasper Fford. I remember why I like him, and why I shouldn’t be scared of him–well, not him, but his disapproval.

So! A topic related to my passion–I’m sure I can come up with that, I did it last time (though I’d been stewing on that topic for 3 years by then), so I can do it again. And it’ll be awesome. I’m aiming for an HD.

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Just got back from the doctor and pharmacy. This was my six month med check on topamax/topiramate, which I have been increasingly disliking.

I began having migraines when I was 13 or 14, and they were pretty irregular; I had very few while on zoloft (one of the few plusses of remaining on that med longer than otherwise necessary). In July of 2007, I had a sudden, unexpected and unexplainable upswing in frequency, from one every six weeks or so to, at the worst of it, three and four a week (it was a nice, slow exponential curve towards that point). I saw a neurologist and was given a beta blocker, inderal/propranolol, which thankfully dropped me back down to one a monthish. We agreed that was a manageable level and I didn’t pursue further treatments.

In March of this year, after slowly watching the number of migraines per month creep back up from maybe one to two or possibly three, I went to the doctor. My blood pressure was tolerable, but my heart rate was quite a bit too low to add more beta blockers (which is what I was hoping for going in); 52 is apparently unacceptable. We started topamax then.

The side effects have been varied and interesting. They’ve been neutral, by and large, with the exception of what appears to be a ten pound loss–definitely positive. There’s been some parasthesia in my lips and fingers when I’m cold (which is pretty unpleasant but tolerable), and some really interesting visual disturbances when I wake up. I can best describe these as ghosting effects, or perhaps what it’s like when the shutter on a camera is too slow for a moving object. Motion blur. Except that everything that moves, or which I move in relation to, has them. FUN. (not fun) This started out as being a very transient thing which lasted up to five minutes after waking and happened once or twice out of the week; now it can last up to an hour and happens probably four or five days out of the week. At the very start, but not so much now, I had organized patterns of moving very small white/irridescent lights in my peripheral vision–now I do sometimes get brief flashes of the white lights on white or lightly coloured walls (I get them when I first get to work if I nap before going in, I find), but not in the same organized patterns as before.

All of this has served to make my doctor think I am very mildly crazy. Well, I can’t exactly blame him. I’m reporting visual phenomena which can’t be validated and probably do sound a little crazy, except that I have a definite start date for them which coincides with the start of this med (also, they look like my migraine auras, which are rare but distinct–and it makes sense to me that the med would affect the same area of my brain).

Twice in June, again in July, twice in August, and then last week coming home from Boo Gardens, I had what I am tentatively labelling seizure-like events (my doctor did not like my tentativeness, either–”You’re not very decisive!”). On all five occasions, I was up waaaaay too late (in the neighborhood of 24-35 hours) because of the way my work schedule ended up, or had only napped for 2-3 hours after getting home from work and then continued on my merry way. On four of the five, I was late getting my meds because I was so late getting home and to bed, although I take my pills when I feel like it, at this point, so I don’t really see how that makes too much of a change.

If I was, in fact, having seizures, they were simple partial in nature. I was concious each time and acutely remember each event (which involved nystagmus and visual disturbance), but not being distressed or feeling like I was in any danger. They were probably occipital in origin–funnily enough, where my migraines tend to start (the migraines that just burst into existence, at least–about a third begin their lives as sinus headaches).

My doc doesn’t buy that the topamax could be causing them, as it’s an anti-epileptic. I say that my body is perverse that way–benadryl doesn’t put me to sleep, either. Either way, he agreed to take me off the topamax and we’ll recheck in 2 weeks to see if the rest of my side effects have dropped off. I want to antagonize the possible seizure activity, so I guess I need to stay up next week. Hmm…wonder what I can do to make that happen? I’ll work something out.

Edit: Oh, balls. Imitrex is contraindicted for basilar migraines, which I have had (apparently so is my beta-blocker, which I didn’t know). I guess I’m bookmarking this and bringing it in with me in two weeks.

Edit again: The ghosting effect is called palinopsia, and I am experiencing the positive variety. I WIN AT WIKIPEDIA.

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I first heard the term “asynchronous development” in a book called Misdiagnosis And Dual Diagnoses Of Gifted Children And Adults: ADHD, Bipolar, OCD, Asperger’s, Depression, And Other Disorders. I found this book rather by accident: I was ordering my tangible, touchable, lickable copies of the first two MBT books along with a second copy of my favourite book on Asperger’s in the whole world (Kitty wants a copy and I promised to purchase it for her). It turned out that alibris.com was the much better deal as a seller there had all three in stock (the total was about $10 less than amazon), and I glanced at the reccomended books before checking out. This book was on there.

I am not the sort to buy books before I’ve read them. I place great value in libraries, and tend only to purchase books I like enough to actually wish to reread or reference. I checked the local library system, and it was in stock at the Churchville branch, so I finished my order and headed over to Churchville (the libraries have been losing items between branches lately, so it was easier to drive 15 minutes myself).

Despite having been identified as ‘gifted’ in school, I didn’t know very much about gifted education–how it could be done, what type I had had versus other types, or even how I had been tested versus other tests (though I happened to have a copy of the paper verifying I needed gifted services, so I was able to find this information). This book was helpful in pointing me in the right direction: Hoagies’ Gifted and SENG. The rest of the book was mixed. The opening chapters on gifted theory, especially the introduction to the concept of overexcitabilities, were very good, but the section on Asperger’s was pretty craptastic (1).

So, asynchronous development. It’s this idea in the gifted community that I’d never heard before–keeping in mind that I work in a kids’ psych hospital and am a semi-active participant in the autism community. Giftedness is thought of as developmental acceleration, but kids can be accelerated at different rates for different things, and not at all for some things. So a child of seven, in 2nd grade chronologically, might read at a ninth grade level, do math at a fifth grade level, and have 2nd grade social skills. Her development is asynchronous.

This is, naturally, frustrating for everyone involved because you want to challenge the child, but when her social peers are her own age, but they can’t keep up mentally, and she is socially unable to keep up with her academic peers in any of her advanced subjects, it becomes difficult to educate such a child in a traditional setting.

I would like to propose the autism community begin to use the concept of asynchronous development. It is an easily understood, non-judgemental, and quick way to describe a person’s functioning level while remaining respectful of their skills and adaptations. This would be a much better shorthand than the currently used “mild/moderate/severe” which tend to imply “possibly can improve/work very, very hard/there is no hope” and are discouraging for parents and autistics alike.

I’m going to try to come up with a set of scales, but I could really use a researcher to work with me on this. Anyone know anyone? Children’s scales are the easiest, of course, because you can rate against other children of ‘typical’ development. But I think we can formulate an adult scale as well, with different criteria.

There is also the idea in the gifted community which would be helpful to bring over into the autism community of different paths of development. Giftedness perhaps should not be thought of as accelerated development at all, but as a different way of developing that looks accelerated compared to peers as children. Intellectual giftedness involves deeper ways of thinking, leadership giftedness involves an outstanding ability to be a leader that is a life-long skill, musical giftedness is lifelong as well. These talents all begin with earlier skills in childhood, but also quicker learning and more depth of learning. The gifted inevitably perform with a deeper understanding, whatever their field.

If we can stop conceptualizing autism as developmental delays, but instead begin to think of it as a different way of thinking and being, I think it would being a positive change to to lives of many autists. The social skills of those on the spectrum are only delayed for a handful of years before, realistically, they ought to be called ‘divergent’. Our social skills are certainly developing, but not in the average, NT way! Now, yes, some developmental delays associated with autism probably should stay under that label (things like toileting or other ADLs). But communicating and social interaction are major hallmarks of ASDs and often cited as “delays” when they are really just different developmental paths altogether that those on the spectrum might take.

It is also important to remember that one can simultaneously be on the spectrum and be gifted. This lovely asynchronous development makes it possible; it sometimes makes life even more frustrating, because you can write 1280 word blog posts about your current topic of interest and forget to eat food all day, but, you know, I don’t think I would choose to be any other way.

1. I actually have a good idea of why this was, and expect you to go read the link on overexcitabilities and then come back here, if you don’t already know what they are/haven’t been exposed to my excited rambling. Open a new tab, I’ll wait.

So, the authors of the book put forth a few times that a kid with psychomotor and intellectual overexcitabilities might be mistaken for ADD/ADHD, or even genuinely have this disorder at the most extreme level. That seems pretty logical to me–a kid that’s a little bit bouncy and very smart might get slapped with a label because he’s disruptive in the classroom due to boredom.

What they seem to overlook, though, is that the sensory/sensual and intellectual overexcitabilities combination is pretty much the profile of a mild ASD. The authors spend the section on Asperger’s talking about how aspies cannot ever, EVAR have empathy (and then using examples of sympathy–they don’t seem to have a clear separation?) and strong stereotypic interests like deep fryers and vacuum cleaners. Frankly, most of the aspies I know online demonstrate well-developed sympathy and a number of us are just fine with the empathy (it just takes a little bit more Theory of Mind, and it tends to be the older aspies because of this). We all have different interests, and while some have been a bit, um, weird, many are things that NT folks are commonly interested in, too–it’s the level of interest that is definitive.

But, see, that’s the sticking point for the gifted community and these authors, because the level that aspies are interested in things is the level that gifted adults and kids are interested in things, a lot of the time; also, as aspies get older we tend to get interested in more things at once (so rather than one or two interests, we might have three or five or six) and all of the sudden you can’t tell an aspie apart from a gifted adult. Funny, that. The gifted community does not want labels for their kids; it is strictly antilabelism, as far as I can tell. Oh, they want labels defining HOW gifted, but they don’t want anything noting any psychiatric or other developmental issues like ADD or an ASD. So the fact that being intellectually gifted with sensory issues looks pretty much exactly like a mild ASD does not compute.

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Those other posts! They must wait. I am having waaaaay too much fun with the autism hub, which has become my renewed favourite autism-centric place now that autism.change.org has officially closed its doors. All will be well–it’s going to be a generalist disability blog, although I’m not sure if the url is changing (and will update my links if this is the case)–but it meant I was at a loss for autism/aspie centric news and reading for a while (and very, very bored at work–my capacity for reading fiction has gone downhill as I’ve gotten older, and I’ve become very spoiled by audio books, but there’s something silly-feeling about sitting and listening to a book, plus people keep interrupting me).

So I think I’m going to do this read and discuss and trackback thing a go. It’s what real bloggers do, right? Fuck, am I a blogger?

What has me all excited, first, is an Extremely Obscene and Offensive post by Socrates, over at his personal blog (as opposed to LB/RB–I need to add his blog to the list and will be doing so now). He discusses a study done at Indiana Univeristy, published J Child Adolesc Psychopharmacol. 2009 Jun;19(3):265-74. The study is about the use of aripiprazole, an atypical antipsychotic, in PDDNOS and Asperger’s kids whose parents felt they were irritable. Having been medicated and not very willing about it as a teen, I’m sure I was described as irritable, too, and I’m fucking glad I wasn’t put on this shit.

I’ve seen kids at my work on this med, and although it was not common it has been increasing (I think due to marketing–I know I saw ads for Abilify, the brand name, before I stopped having a tv). It isn’t approved for use in kids, as he notes in the post. This drug is commonly given for schizophrenia and bipolar. Frankly, I’m not sure why anyone thought it would be an awesome idea to give to kids on the spectrum, except that it’s expensive and they were getting paid for it. The side effects are crap, and well known for this whole class of drugs:

Weight gain is a given, sometimes drastic. Extrapyramidal symptoms, like tardive dyskinesia or dystonia, are reasonably common, and sometimes permanent. Antipsychotics can increase depression. The list for known and warned side effects is chilling. Great, your child is drooling now, but it’s not a super-big deal. At least he’s not irritable…oh, no, irritability is actually on the list of side effects. Nevermind. Brilliant study, dipshits. Give the kids something that permanently damages them and has the potential to cause what you’re trying to fix, which sounds like teenage moodiness combined with parents who tend to medicalize everything because their children have a label.

I promise never to be this sort of doctor.

I was placed on Zoloft as a teen, just before I turned 17. I was resistant–I didn’t like the idea that I needed to be medicated, first, and also couldn’t grasp that I might need to be medicated. I was given Zoloft because of the known strength of SSRIs for anxiety, which was what the psychologist/psychiatrist team felt I was dealing with (no mention of Asperger’s; although having discussed this with Mom, she can see how I recall that time–and have blocked parts of it–and interpret it through a lense of autism). Knowing that about 60% of teenagers on the spectrum deal with anxiety has helped me normalize these feelings in a retroactive way; at the time I found it very stigmatizing and the side effects of the drug did not help. I gained weight, about 40lbs all told, in the three years I was on Zoloft. I lost what ability I had to tell when I was hungry or not, which wasn’t very well-developed to start, so I kept eating because I enjoyed the taste of things–or didn’t eat all day because I was caught up in a special interest. This weight has proved very difficult to budge, and my efforts have been half-hearted and defeatist (something to work on).

The anxiety, and associated depression, label haunts me, though. It successfully stopped my application to the Peace Corps (I refused to submit to a psych eval just because I’d had anxiety issues as a teen), and is a source of teasing in my family (a constant issue). It isn’t okay for my mom to be able to joke that I should take some Zoloft when I get upset and she thinks it’s overreacting, because I was given a label of being anxious as a teenager, and it isn’t okay for these teenagers in this study to be told that their normal teenage irritation and moodiness is something bigger, something pathological, because they have a label of Asperger’s or PDDNOS.

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