My attention span is currently at a level I would describe as “kitten.”

I’ve known for a long time that my attention is directly correlated to the interestingness of the material–this isn’t unusual for kids identified as gifted (nor the adults they grow into), or anyone on the spectrum. In fact, it was this extreme hyperfocus that first had me questioning if I might be on the spectrum as I read tales of kids and their encyclopedic knowledge of topics and saw myself. This one time, I drew the same picture with only minor variations a couple hundred times; I was nine. I suspect I could still draw it.

I’ve also known for a long time that if I’m otherwise engaged, I can pay attention to topics of less interest with some reliability. In a school setting, for example, I’m usually really strongly into one class and then have varying levels of caring about the others–just like anyone else. Because of that high interest class, though, I have this sort of carry-over attention effect making it easier to pay attention to other material that is not as engaging for me. This has led me to the conclusion that I do well in moderate to high stress environments, but yesterday I started thinking (a rare thing these days when my mind lands on a topic and only stays for a few minutes at most), and this may not be the case.

There are different kinds of stress. Google thinks there are three–acute, episodic, and chronic–but that’s not what I mean. Those factors certainly play in, but I think stress can and should be divided by what part of you it engages, not just the length. Intellectual stress would be things like heavy schoolwork, complex reading material (fiction or no), non-rote professional work, puzzle solving. Emotional stress is identifying your own and other people’s feelings, social cues, working with other people. Physical stress could be identifying sensations (like needing to pee or being hungry), things that involve physical labour, or enduring discomfort (like working in a too-cold or too-hot place). Some combination of three things creates the stress, and that can then be chronic, episodic, or acute.

By this system, I really like things that are chronically intellectually stressful, with low levels of emotional or physical stress. I don’t like to move or worry about what my body language says. That is…not how I would currently describe my life. So even while I feel stressed, worrying about money and the cat and immigration, it isn’t the sort of stress that puts me in a position to spend a lot of time thinking. Those stressors are not comfortable for me, so they use up many more spoons than the stressors I like–and because I’ve wasted those spoons, I can’t do the things I enjoy (like reading scienceblogs) which could potentially refresh my spoons.

When I’m stressed–in the bad, not comfortable way–my memory and attention are spotty. I need to have a constant stream of intellectual information coming in–and going out, such as via blogging–to feed my own ruminative processes. Not only do I think they are a good thing, I now think they are essential to my well-being. When I am taking in enough information to have a viable ruminative background process going, my whole mind is working in concert, concious, unconcious, and memory. Being able to ruminate this way requires a precise memory, which is the first thing to go when I’m under stress (I often have no memory of meltdowns, for example–they’re just missing or I have a handful of photograph-like images).

I have been incredibly, risably forgetful lately–and lucky Kit doesn’t mind. Things we discussed multiple times have slipped my mind as if they never were. There is no sense of loss, of having forgotten something. My memory is not recording in the first place. Even when she reminds me, often with my own words, they feel new, unseen.

We talked about it yesterday, and I think it shifted my brain into the right gear to ruminate, because it hit me this morning, how all of this is connected for me: I need intellectual stress (and preferably as little of the other kinds as possible) to function well; I know alternate sources for this when I am not in uni; when I do not get this stress I become unable to seek it out because my will to live attention span grows shorter and shorter the longer I go without; this correlates with an unusually poor memory; these things are because with information coming in, I am able to ruminate properly (like any good ruminant and/or monster), because it is an adaptive and helpful process for me rather than being a destructive way to rehash bad memories or thoughts; therefore I have to just force myself to do something brainy, because it will sort of kickstart the whole process and I will stop feeling leaden. Which is…a helpful conclusion, and hopefully writing this will have done enough kickstarting I’ll no longer feel like my brain is dribbling out my ears slowly and painfully.

This post has multiple topics because I am too lazy to make multiple posts.

1. I run google analytics on this website. I promise, I’m not tracking you down at all, my meagre readers, but I generally find it entertaining. Originally, I got analytics because I wanted to use it with etsy, and as an after-thought maybe six weeks ago, I realized I could run it on here. Like magic.

The most interesting part of analytics is the search referral terms. The top ten search terms that get people onto my blog are:

1. alternate lexicon
2. the alternate lexicon
3. perseveration/rumination thinking style
4. “foreign service” autism
5. “the neurotypical spectrum”
6. alternatelexicon.com
7. ari ne’eman is a piece of shit
8. autism loneliness
9. feminism asperger
10. food choice perseveration

Now, I should note that “top ten” is sort of euphemistic, since only the first three have yielded multiple hits. Still. This list is pretty awesome.

1, 2, and 6 are self-explanatory, though 6 begs the question of why they googled me instead of typing it into the url bar. 3, 8, 9, and 10 are all things I am interested in and plan to write about more (I’m thinking maybe of writing about feminism and autism for blogging against disableism day). I have no beef with Ari Ne’eman, so I’m not sure how 7 gets you there (except that now I’ve typed it out, it will inevitably do so again). As for 4, I’ve thought about writing about my experience applying for the foreign service two years in a row and being rejected early in the process, but, here’s the thing: if anyone (on or off the spectrum) tries to tell you that people with autsim, as a rule, do not hold grudges, that person is a LYING LIAR. I’m still angry at the foreign service and probably will continue to be for years. One of the many reasons I’m interested in medical school is so I can be better than them (yes, I know this makes no sense), and I felt an overwhelming sense of loss this spring when I realized I was not taking the exam this year. It’s really for the best if I don’t write about it.

2. There are a lot of cool places I like to go to that, for whatever reason, I have utterly failed to add to my links sidebar. Please check them out while I get to remodelling (see 3, below).

FWD/Forward, a blog about feminism and disability.

Hyperbole and a Half, written by someone named Ali, too, except she spells it wrong. Her blog is awesome enough to forgive that.

Hezabelle, my dear friend Heather’s awesomeness.

The princess of denial, my other dear friend Sarah’s awesomeness.

Both blogs my girlfriend has made and sort of totally failed to keep up with (there’s Kate Miller-Heidke on one of them!).

It appears that Derailing for Dummies (a must read) is no longer online, but there’s a reconstruction.

3. I want a new theme. HALP. I’m okay messing with it a bit to get what I want–I did with this them (and sort of broke it in the process, whatever). Does anyone have an opinion on any of these?

Paper
Airmail
Look Booster
Magatheme

Fair warning: there’s a lot of links in this post, and they’re not there to be pretty.

There’s been some discussion on ScienceBlogs of Jonah Lehrer’s recent piece for the NYTimes, a review of depression and rumination and some mildly interesting thoughts on why rumination may confer an evolutionary advantage, thus preserving depression through evolution. Like most evolutionary psych theories, I think this is sort of pretty much bunk–a trait just doesn’t have to kill you off before you reproduce to be kept in the gene pool. Hell, even if it does kill you off, if your sibling has that gene but not expressed in the same manner and they reproduce, the gene can be passed on without issues. A really interesting book about genetics and disease states that I would highly reccomend is Survival of the Sickest.

That drifted off topic pretty quickly.

Okay, so the article is about rumination in depression and how it serves an essential function: for people with reactive depressions (that is, depression because something in their life sucks, like a pet or close friend or family member dying or being diagnosed with a serious illness or losing a job, as opposed to depression strictly caused by a chemical imbalance), the process of rumination helps alleviate the depression itself. Rumination is going over and over and over a scenario or comment or anything in in the past repeatedly. People who tend to be ruminative thinkers are more likely to be depressed, though it’s not completely clear if this is because ruminative thought processes lead to depression (otherwise known as dwelling on shitty stuff in life) or if people who are depressed turn to rumination.

I think it’s pretty simple to draw a parallel here to perseveration, or doing/thinking/saying something over and over again. It is also important to note that a large number of people on the autism spectrum do struggle with depression and/or anxiety. I would like to suggest that the broader thinking style is perseverative, and rumination (focus on events in the past) and worry (focus on events in the future) are just two subtypes of this broader thinking style. It doesn’t occur in just people on the autism spectrum: people with ADD (especially the inattentive/not hyperactive types) and people with ocd experience it, too. It seems that the broader neurodiverse community has at least a passing familiarity with this so-called autistic trait that we tend to assume must be unique to us as a group. Hell, even neurotypical people perseverate (though because they’re NT we kindly don’t label it as if it’s something bad or wrong or symptomatic).

So rumination allows (at least some) people who are depressed to focus and solve whatever problem it is that is causing their depression. People who are on the spectrum or otherwise neurodiverse use perseveration in much the same way at least some of the time–and sometimes, perhaps, it traps us into a negative thinking pattern which results in depression. Perhaps we are more inclined to perseveration/rumination/what have you being our thinking style overall. While not being able to turn off this compulsive drive can lead to problems, I think it’s certainly true that it can also lead to victories. We likely would not have some of our scientific achievements without people who perseverated the crap out of their topic of choice. On a more personal level, perseveration allows me to work through my thoughts and sort them into a coherent form that I can easily access and share with others. Yes, it can trap me into nonfuctional routines, food choices, or thinking patterns, but it is also rewarding. Perseveration taught me to draw well (I wonder if my parents still have any of the literally hundreds of variations I did of a single girl copied out of a book my dad had), probably had a part in my extreme early literacy, produced some of my best fiction writing. Perseverative thinking produced this blog post.

I don’t think we necessarily need to have an evolutionary explanation for why rumination (and as suggested by the article, depression) happens. Like many traits found within the non-neurotypical portion of neurodiversity, I think a tendency to be ruminative is just a part of the broader human experience. This makes labelling it a problem within the non-NT part of the population pretty obnoxious, though: because it is our primary thinking style rather than an accessory thinking style, we suddenly have problematic thinking. It is important to separate out the thinking style (perseverative) from the problems that can result. My way of thinking isn’t a problem. My choice of topics of what to think about (inasmuch as they are a choice) can be.

I’m not sure how to write a good transition here, so just go with me.

Also common in non-NTs are difficulties with executive function. This is basically the part of your brain that plans, that does a lot of abstract thinking, that allows for flexibility rather than adherence to routine, that helps keep your working memory strong. To varying degrees, most people on the spectrum seem to have some difficulties with executive function. It is also a major problem in depression for a lot of people.

What if perseveration is used to help overcome executive dysfunction?

What actually brought this to mind was an article in Real Simple, a magazine I flipped through at my mom’s house. It reminded me of information I already know, but had forgotten (ha!): there are a couple different theories of what working memory IS out there, but they all seem to agree that to move something from working memory to actual kept knowledge requires effort–repetitions, emotional involvement, word tricks.

Yes, that’s right, working memory often requires repetitive processing of information to transfer that information to long-term memory and become part of a person’s knowledge base. And that, if you are lucky enough to be non-neurotypical, is often called “perseveration.” Or rumination. If people with executive dysfunctions (spectrumites, depressed people, people with OCD, Tourette’s, ADHD, whatever) are also more likely to have ruminative thought processes, and we know that at least a little bit of rumination/perseveration can help assist along working memory (an executive function), then it seems like there should be studies on the effects of perseverative thinking in overcoming executive functioning problems for, well, everyone with executive functioning problems!

I totally see my postdoc right here, guys. Now I need to get into med school.

Found at Autism Street originally.

I love TEDtalks; they are often enlightening, often entertaining, often interesting. This talk is by Aimee Mullins, on the nature of disability, and is well worth your 22 minutes.

In more personal news, the cat and I are back from Hotlanta and pictures will arrive shortly.

My ability to quote Kate lyrics for titles remains unfettered and, probably, unimpressive.

I was reading a blog I quite enjoy just now, and gladly read her breakdown of a new study reporting Copy Number Variations (CNVs) in relation to autism.

I love science. That is all. Head on over there to read why this is interesting.

Like most days at work, I’ve been hanging out on the autism hub reading; like very few days, I’m actually responding to something I read.

So, Sarah talked about self-diagnosis and the hate that seems to come with that word (or similar, like self-identifying or self-labelling). Some of what she said I found really meaningful, like:

I also know several people who have derived great personal benefits from self-identification. (Some have since been professionally diagnosed.) I am talking about people who have spent their entire lives wondering why they were different from other people, why they experienced certain difficulties. I am talking about people who have had all sorts of psychiatric diagnoses which didn’t fit, people who may have been institutionalized and spent years feeling depressed and suicidal. For many of them, self-identifying as autistic has provided significant help, self-esteem, and self-understanding.

Oh, hi, me. Yeah, I identify with that–becoming autistically obsessed with autism has given me some serious insight into how I work; it hasn’t fixed everything and made it sunshine and rainbows, but it’s at least given me a framework for my self-construction that I don’t have to patch up. I understand why I’m anxious, now. I understand why I don’t understand my friends, my family, even Kit, and why I get so frustrated. Parts of my childhood, like blind rages due to social and communicative frustrations that I could not get my head around that left others hurt (emotionally or otherwise), or how I’ve always felt most at home in print, or my lack of stranger-fear as a toddler, or even hyperlexia all fit into a sense of “this may not be normal for everyone, but it’s normal for me and these other people.” Self-identifying as autistic has helped me.

And if you’re thinking “well, those self-diagnosed people should just get a diagnosis,” then I’d point out that things really aren’t that simple for most people. Here are some common reasons why autistic people do not have official diagnoses:

1. Age. The current autism criteria did not come into being until the late 80s/early 90s, and awareness of the autism spectrum has lagged even further behind. The older an autistic person is, the more likely he/she is to be undiagnosed.

2. Money. I’m not as familiar with the countries outside of the U.S., but I do know that there are significant financial barriers to obtaining a professional evaluation and diagnosis. Insurance companies typically do not cover adult autism evaluations–and, of course, not all Americans are lucky enough to even have insurance. A comprehensive autism evaluation can cost as much as $2,000–if not even more. This is a significant expense for most people, let alone autistic people who may be unemployed or underemployed.

I know there are a lot of adults who would love to be evaluated for autism, but can’t for financial reasons. So to anyone who complains about self-diagnosis: Unless you’re willing to pay for every adult who wants an evaluation to receive one, you don’t have much room for criticism.

I’ve been struggling to get a professional diagnosis for about six months, now. I’ve outlined why I’d like it before, and if anyone really cares I could go into how I meet DSM criteria and all that crap. The first psychologist I saw was crap, and while my therapist absolutely agrees with me, she isn’t comfortable giving an “official” diagnosis due to her own training (she’s an LSCW and awesome, but I do understand her hesistation).

Unfortunately, my hope to get that taken care of ASAP is ruined by the part where I’m broke, broke, so broke. While the psychologist with whom I had been emailing has quite reasonable hourly fees, once you start to consider the testing to be done (an IQ test–hinky as they may be, I still feel sort of fond of them?–and at least one major autism inventory), plus an official write up, a reasonable hourly fee suddenly becomes “Fuck! Where am I going to get $700?” With no serious hope of reimbursement from my insurance, it’s unaffordable (see point 2 in the block quote above)–and this is an inexpensive clinician who happens to have an interest in autism, not someone trained specifically in such. I’m left frustrated and will probably ask my therapist to write me an official diagnosis either way, just so I have the paperwork for school for now.

Continuing with quoting a lot of text:

3. Professional ignorance. Professionals keep working to diagnoses autistic people at earlier and earlier ages–because we’re all doomed if we’re not diagnosed by the age of two, you know–but tend to know very little about evaluating adults. Indeed, there aren’t even any specific criteria for evaluating adults–a problem when many autistic adults learn to “pass” as neurotypical to varying degrees. And while consultation with parents or others who knew the autistic adult as a younger child can help provide corroborating evidence for a diagnosis, this isn’t always practical, for a variety of reasons. I know autistic adults–particularly women–who have had difficulties finding qualified professionals to evaluate them even in well-populated areas. How much worse might it be for autistics in sparsely populated areas?

4. Stereotypes. This is particularly an issue for women, but it’s certainly not limited to us. Talk to enough autistic adults and you’ll find tons of stories of professionals telling them they couldn’t be on the spectrum because…

-They’re female
-They can talk
-They have a job or have graduated college
-They are in a long-term relationship
-They have a friend–may sometimes be plural, but sometimes only singular
-They can make (or fake) eye contact
-They aren’t like this other autistic person known to the professional
-They are an adult! If they were really autistic, they would have been diagnosed as a kid.

The last one is particularly high on tautological “logic.”

These two really touch raw nerves for me. I live in a pretty rural area, though I’m within about 2 hours of two moderately sized metro areas (including the state capital) and within 4 for DC. Combine lack of knowledge of how adults–especially bright adults who have learned to fit in or else–present on the spectrum and especially ALL of point 4 (each and every one of those BUTS was used against me by the first psychologist), and I know personally how difficult this shit is.

And yet…

I also partly agree with some of the comments that disagree with her post (mostly because I think they aren’t speaking to the point of the post, which is institutional difficulties with obtaining a diagnosis as an adult). I think it’s disengenuous to ignore the theme of the post, but the comments also do make some valid points. For one, Stephanie Lynn Keil’s comment:

It’s hard for me to take self-diagnosed people seriously because I knew a few who self-diagnosed and when they went to the doctor to get the self-diagnosis confirmed they were told they didn’t have an ASD. So they just decided that they doctors were wrong and they were right.

Sorry, I can’t endorse this.

People don’t self-diagnose diabetes, cancer, schizophrenia, etc. If you self-diagnose yourself with diabetes and then your doctor tell you that you don’t have it you don’t go around telling everyone that your doctor is wrong and really do have it, do you?

At first glance, this seems pretty okay to me–she’s right, self-diagnosing medical issues is called hyperchondria and is not cool. Then I thought about it some more.

First of all, comparing diagnosis of autism (or any psychological abnormality) to diseases is NOT on–even if only for the fact that we can test reliably for things like diabetes or cancer, but we cannot for ASDs or most mental healh issues. This isn’t even to touch on the fact that comparing autism to a disease is insulting for anyone, self-diagnosed or not.

What she appears to assume is that all professionals are the same (ignoring points 3 and 4 of Sarah’s post, essentially). They aren’t. I chose to go to a psychologist who was accepted by my insurance. No other reason. I can’t afford to go outside of insurance (I could barely afford him as he was), so I didn’t have the luxury to choose a doctor with significant knowlege of autism. Additionally, it’s pretty easy to test for diabetes, but diagnosing autism is tricky in the first place and just gets harder the older the diagnosee is. There is no “Yep, you have it!” test like there is with diabetes, and the older someone undergoing evaluation is, the more likely they are to present as “normal”–kids who are more severely affected by their autism are diagnosed much younger, it’s easily visible in the average age of diagnosis gap between “autism” and “Asperger’s syndrome” (around 3 for autism, but 7 or 8 for Asperger’s). I understand and really appreciate that it can be hard to take people seriously, especially after they’ve been dismissed by a doctor, but it seems like a rejection of reality to dismiss them out of hand. Repeated doctors, perhaps? But having been told I was wrong (and given two inappropriate diagnoses that I don’t fit the criteria for–if he had been a good doctor, he’d at least have sent me away with nothing!), I can’t whole-heartedly support the belief that because a doctor said NO, it’s forever or even likely a NO.

I also liked part of the comment by Nightstorm (who makes a joke about Otherkin in the full comment, but seriously seems to be…nevermind):

Self-diagnosis has no social advantage, you can’t get governmental support SSI or any social help. So it becomes more of a personal thing which is fine. I see no problem with self-dxing as a place holder, but my big issue are the little rags who use it as a replacement for an actual diagnosis. No. It isn’t. There is no actual advantage to it. It just ends up being way for some people to fit in which for me is insulting. I didn’t pick this label, because I was lonely and I wanted a group to participate in. And the problem is, when people self-diagnosis and then act like douches, it does make us official diagnosed look bad. I can’t use the term “asperger autist’ or “has asperger syndrome” online because of the douches who abuse their label.

She’s right. There’s no social advantage to a self-diagnosis of Asperger’s…there’s really no advantage at all. It makes your friends think you’re sort of nuts (hi, Dilly!) and can cause rifts with your family. I have a hard time seeing a use for it except as the place-holder he describes, which is where I am now. On the internet, anyone can claim to have anything–anyone who has participated in a largish forum has known people to fake pregnancies, suicidal ideation, marriages, anything, whole lives. There’s no requirement for veracity. So a lot of people (hello, livejournal Asperger’s group) self-diagnosis without any real cause except that they heard it’s for socially awkward people and act like jerks and get the whole group misunderstood.

But…there are all those reasons that someone might not be able to get professionally diagnosed. I think there is an important distinction to be made between those who want an official diagnosis and those who do not (the former says, to me, that it’s not something trendy but real underlying issues, unlike the latter), and even the reasons why someone wants a diagnosis and how willing they are to accept hearing “no, sorry” (exhaustive research and education paired with self-understanding and need for supports is much more worthy than an excuse to be a jerk). I can’t dismiss all people who are self-diagnosed because I don’t know their reasons.

I’m no longer sure where I’m going with this, actually.

Edit: The awesome comments of awesomeness by Julian^Amorpha are totally worth checking out. They are too long to quote from, but involve a thorough dissection of privilege and minority group status that I feel really refutes the complaints Stephanie Lynn Weil and Nightstar both have (and that I partially sympathized with above).

I think my point is that getting a diagnosis is a fucking pain and even I, relatively privileged to be well educated, verbal, with a few friends, and a job, can’t afford it even though I desperately want it and believe it to be appropriate.

In lieu of a conclusion, I give you a kitten:

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.

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.

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.

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.