I was reading Sullivan over at LB/RB as he elucidated why the new hate video by Autism Speaks bothers him. I agreed with his thoughts, but one thing in particular jumped out at me:

Fourth, with apologies to my fellow parents, but the autistics really are the heroes. There are kids working harder in kindergarten than some people work in grad school. There are adults working harder just to get through the day than I do at work. If we are supposed to pity the parent who is embarrassed by their child in the park, how about some compassion for the child (or adult) undergoing the meltdown?

Emphasis mine, because this line inspired this post.

I would like to talk about the last time I had a full-on meltdown in public. My last meltdown in private was a few weeks ago, when firefox was self-destructing, but I think all people, adult or child, autistic, NT, or anything else, deserve the occasional private meltdown. The public ones are a bit more difficult to deal with.

I was in New York City, with Kit. It was Saturday, the last day of our vacation, and I was less enthused about the events planned than I had been for previous days: we were to go to the Top of the Rock (a ridiculously expensive trip to the top of the Rockafeller Center), to the Met, and then to get some food. Maybe FAO Schwartz, too, for presents.

This is where I mention that I was not thrilled to be going that high up. I’m not afraid of heights, per se, but more than I’m afraid of middle-distance heights. Being a few stories up in a building is fine, or looking out over Afton mountain as I’m driving home from Charlottesville. I’m positively gleeful in airplanes when I can see the land underneath us. But this middle height, being 70 floors up, was a terrifying, terrible idea. Still, Kitty really wanted to do it, so we went. I have photos from that which still need to get added to flickr. I survived, it was less scary than I thought it might be (though still pretty terrifying), and the pictures are very neat.

I was already a little on edge, though I had survived this terror with relative aplomb, when we arrived at the Met. When we go to places that require a lot of walking, I generally insist that Kit get a wheelchair. I’d rather push all day and have my arms be tired than have Kitty walking all day and accidentally running out of spoons. The Met, though they offer wheelchairs, is not actually wheelchair friendly. You have to stay on the designated paths, there are unmarked stairs, and fuck it all they want you to go through 18th/19th century European art, which is frankly the last thing I want to do. We wanted to see a few things, especially the musical instruments, which meant, of course, that these were virtually impossible to reach (at one point she got out of the chair, walked down a flight of stairs, and I carried it down after her). The music room closed early without warning or reason. A woman tried to tell us how to get to the exhibit we wanted to see in the Japanese section, but it involved more stairs. I was increasingly angry and frustrated, because I just wanted to see the art, but it was overcrowded, overlarge, and poorly designed. We left exclaiming over how terrible it had been.

We made a pit stop in FAO Schwartz to look at toys/see the giant piano (which we’d missed when we went in January), and buy souveniers for Stina and Dylan. I was starting to get cranky because I was hungry, and the giant candy display lured me in like a terrible, neon trap. I bought quite a lot, at an exhorbitant price, about 1/3 for me and the rest for Stina and Dylan. The store was closing, so we left.

I made it about ten steps outside the door before the meltdown hit. I was tired, and hungry, and upset that I had just spent this money irrationally, and I cried. I sat down and refused to move, even when a security guard came over and told me to (Kitty defended me, though I took issue with it at the time, because I was in that mood). I eventually got up and stormed off, Kitty trailing and starting to get annoyed with my attitude. I was completely unable to express how overwhelmed I felt, why this had happened, or how to fix it. As we waited for the subway, I began to calm, but the jostling and pushing and having to touch strangers on the subway set me on edge again. I did not properly calm until halfway through dinner.

Well, so I thought at the time. I didn’t actually calm down until we were on the plane the next day.

We had to get up ridiculously early, because our flight left at 10. I had checked the subway and was pretty sure I knew how to get us there the fastest way, so we left at the crack of dawn. Then the train was delayed. Then we had to transfer trains and that one was delayed. We got to the airport with some time to spare, though I was pretty jittery and upset, hand-wringing and stimming all over the place. Then, in the worst designed concept ever created, we had to check Kit’s bag. See, she came over for a month, and that takes a lot of clothes and presents. She had a purse, a hand luggage bag, her laptop, and a suitcase, the last of which was to be checked. I had a backpack and a suitcase. Everything was a very tight fit as it was. The way it worked was we checked her in, got her ticket, and then went to the counter to check her bag…except that the kiosks to check in were in the middle of the lines to check the bags, resulting in our not being in a line for the first five minutes. When we got her checked in, finally, it was fifteen minutes to our plane leaving.

When I had checked in, all I got was a slip to see the gate agent–no ticket. Between the time delay and that, I was convinced we weren’t going to get on the plane.

We went to get in line for the TSA screening, but were stopped by a lady who told Kit she had too many bags. Despite our pointing out that the laptop had to be out anyway to check it, that Kit had flown with all three before and it wasn’t a problem, that we were missing our flight, she insisted that we put the bag away. And that was when it hit. Sobbing, muttering hate under my breath (didn’t want to get held up by the TSA for extra screening because I’d threatened someone), I managed to shove it into my suitcase, where there really wasn’t room. I sobbed for the next ten minutes as we walked/ran to the gate, and Kitty says that I was pretty harsh on her, although I honestly don’t remember and feel shitty for both doing it and not remembering.

My ticket was waiting at the gate, and there was no issue with Kitty carrying her laptop on board separately–the gate agents were very nice, and half of our plane was late anyway because of the hold-up in check in.

I had very little control over either meltdown (and the second was really just an explosive continuation of the first, a bit delayed), though I’m glad I had the presence of mind not to run into traffic or yell at the TSA lady and get myself in trouble. I felt bad after, because I don’t want to hurt the feelings of those closest to me, and apologized. But that doesn’t negate the fact that it happened.

I am 24, and I have had a meltdown in the past 3 months worthy of a small child. I am, if we must use this language, an extremely high functioning autistic. I pass for normal a lot of the time. And I still have a classic autistic trait, because autism is a spectrum. It has been said before, but there are as many autisms as there are people with autism. Each of us have our skills and challenges, and we each deserve the supports that we need, be it a reduction of sensory overloads, the understanding of our friends and family, or educational supports. I am very glad I have them, and people who love me even when I have a meltdown. I hope that one day, this will be true for all of us on the spectrum.

I applied to join the hub, but no word yet. It’s been a month and a half and I’m sort of annoyed.

Regardless, I follow the blogs on the hub quite regularly; it’s a good way to pass the time at work, and not allow coworkers who pretty much fail at the comprehension of autism and epidemiology to get on my nerves too much (1). There has been discussion of late, especially on Sarah’s fabulous blog (which, reading sometimes, I wonder if the most expedient explanation for why I enjoy her so much is that we are actually the same person), of the idea that Asperger’s is a linguistic tool to try to divide the autism community as a whole.

When the majority is dealing with an increasingly uppity minority, the best way to get rid of them is to divide them. We see this in the black community (just look up “good hair” and see, or light skin), we see it in caste systems, and it’s quite evident in the autism community. Autism is a spectrum disorder, and those of us diagnosed with Asperger’s syndrome are, definitionally, autistic. What the inclusion of Asperger’s as a separate disorder does is twofold: it allows the people diagnosed with this “less severe” (read: more favourable, more normal, more valued) label to wish to distance themselves from those with “real” autism, and it allows those with more needs, who may be less well functioning in the way which society demands, (or their advocates) to say that those with Asperger’s aren’t really autistic. So rather than uniting and dealing with our collective shit, and sticking up for all of us, the autism community ends up divided between those who are too good to hang out with those autistic people, and those who would rather have the higher functioning group removed from the spectrum altogether lest they take up any of the limited resources doled out.

This is pretty much crap.

There is a parallel to be drawn to the queer community, which I am (ha) intimately familiar with. The most visible and most accepted groups within the queer community are people who, simply, are gender normative and gay or lesbian (this includes, to a degree, the likes of butches and femmes or bears). The others are…not so welcome, a lot of the time. Ask any bisexual (hey, comments are open and I qualify), and he or she will be glad to tell you about being discriminated against by both straight and queer people. There is an assumption that because there is a wider initial group to whom bisexuals may be attracted that their problems are more paltry, less worthy of discussion or consideration. This leads to some interesting but hurtful stereotypes (like bisexuals being sluts) which are not, on the whole, true. Bisexuals find themselves, like those currently diagnosed with Asperger’s, at a loss: they are not gay enough (autistic enough) for many queer groups, but they are not straight enough (NT enough) for many of their straight friends. Transpeople tend to have a similarly difficult time in the queer community, where many people, despite progressive attitudes about sex and sexual attraction, are just as conservative as their straight peers when it comes to gender.

In light of all of these thoughts, I’ve decided to start using autistic as a self-descriptor more regularly and hopefully to the preference of Asperger’s; I like Sarah’s tact of saying ‘Asperger’s autistic’, but find the lack of alternative (‘original flavour autistic’? ‘Kanner’s autistic’?) for those with other types of autism to be troubling. I can’t quite believe I’m saying this, but I’m looking forward to the next DSM (which is looking like it’ll be a bit of a joke, unfortunately), as I heard a rumour they were taking Asperger’s out and going with a numerical scale. While this has its own problems, it solves one language-based issue, and for now, I’ll take it.

Furrther reading:
Cat in a Dog’s World

1. Sample question: “But…why has the rate of autism gone from, like, 1 in 10,000 to 1 in 150 in the past twenty years?” Sample answers: “Well, first, there’s a lot of diagnostic substitution going on. A lot of the kids we see here would have been called intellectually disabled or possibly schizophrenic twenty years ago. Also, in 94 the diagnostic criteria were broadened significantly, and now include Asperger’s, which includes people like myself. I was never diagnosed as a child but I have been as an adult because, well, I meet the criteria and knowing this has helped me clarify my life. Kids like me would have been missed entirely a generation or two ago. Also, if you’re trying to imply there is something nefarious going on, I would be happy to point you towards studies that refute whatever you’re thinking of.” He did not like this answer..

Autism Speaks doesn’t speak for me.

They recently released a new mini-infomercial/video about autism, compiled from submissions from families which include at least one autistic member. The video is available here (youtube.com/watch?v=HDdcDlQVYtM) but I’d prefer not to link to hate speech, so you’ll have to copy it into your browser yourself.

The biggest and most obvious issue with this is the personification of autism as some creepy dude who comes and steals your children. Autism is a description of a person’s strengths and weaknesses, of their very personality. It is a broad word and covers a whole spectrum of people from the intellectually disabled to the very gifted, from the nonverbal to those who never shut up to those who prefer to write, to those with incredible talents in music or math or language to those who are quite ordinary. I personally feel that my autism is unable to be extracted from my personhood; it is a descriptive label for many of the things which make me unique. I am a better writer, a better artist, a better researcher because of autism, and I would not trade those skills and passions for the removal of the parts of me that are more problematic because of autism, like the inability to connect at times or sensory issues. I work with a lot of autistic kids at my day job (is “day job” even appropriate when one works third shift?), and each and every one of them has benefits alongside the defecits caused by autism.

Autism doesn’t change who a person is, at a fundamental level. Autism is that person, that child, that brother or sister, that mother or father. And autistics can speak for themselves, be it in words–spoken or written–in sign, in dance, in PECS, in music. We are all capable of communicating in our own ways. What Autism Speaks has never grasped is that these ways are valid, and deserve to be heard.

Autism Speaks doesn’t speak for me.

Further reading on this video:
The Asperger’s LJ community
Cat in a Dog’s World
Left Brain/Right Brain

My favourite part is when he sees the camera, at the end.

Shit, maybe the topamax was actually doing something–I’m at the onset of migraine number two for this week, and am aware of two things:

1. I should have guessed, given I slept for 10 hours (my prodrome invariably involves sleepiness, as do the actual headache, and the postdrome–I’m basically not sleepy when my migraines are well controlled and all other times are no-go).
2. I do not have imitrex with me, because, shit, I already had one this week, and I was not expecting further issues for at least another day or two.

This one involved a very minor (very, very) aura, but the main feature is occipital pain and sinus pain, so far. I want a nap.

Edit: Excedrin. This is why I always have it with me. Fuck this ‘scrip shit. Within an hour, I was merely tender, and within two it was gone.

I don’t really have words for how sad I am to have gotten a rejection letter from a job I applied for, earlier this week. I applied almost a month ago, and barely spoke to anyone; most of my contact with them was in voicemails left (that would be me leaving voicemails). The two real phone contacts I did have were both during the middle of the day, waking me up. I was never asked to go out to the school to interview properly, but I was strung along for four weeks hoping for a job that never materialized. Apparently would never materialize; the headmaster doesn’t like me after we met in April. I had gone, then, to turn in an application, and he interviewed me on the spot. Anyone familiar with anyone on the spectrum will be able to guess how that went (hint: I thought I did really well, until it turned out otherwise).

Now there’s a craigslist job posting recruiting for this same job. My ability to keep job searching has just hit an all-time low.

I had a job I thought was going to eventuate, back in June. I last heard from them two months ago to say that they were restructuring the company and when they were done they’d be in touch to hire me. My emails to them have not garnered responses.

I do not like my current job, but it pays the bills and has fabulous insurance. I was hoping to get something else so I can stop working night shift, stop hating the people I have to see every day, but realizing that it took two separate applications and interviews to get this shitty job doesn’t give me much hope for finding anything better. Is it so much to ask for a community of one’s peers? Or even a fair chance at an interview?

I guess so.

Still tender and vaguely headachey in the occipital region, almost exactly 4 hours after I took the imitrex (about five after I started noticing the onset of pain, while we were at the vet’s and driving home). I’m also currently having a hiccuping fit. I should have included them in my description of seizure-like bizzareness. Who the hell hiccups for ten minutes straight without precipitant? Apparently people having simple partial seizures. I really hope they go away as I withdraw from the topamax over the next day or two–it’s even become something of a joke at work (well, I’m not entirely certain I’m not the butt of a joke in this case, but I’m not offended, so it’s harmless?) that I hiccup often and without cause. Light sensitivity has receded. Frankly, I’ve had as good or better pain management on excedrin. Mom reccomended chasing with ibuprofin, as she thinks it’s what’s in the newer formulation–I’ll check drugs.com and see.

Aaaaand here comes my first migraine. I can feel it starting everywhere in my head (it’s one of those, great–did you know “sinus headaches” are usually migraines?), from above my cheekbones to the backs of my eyes to, no surprise, the occipital region of my skull. It is a rare migraine for me that doesn’t have some occipital involvement, whether in the form of pain that ends up centred there or scintillations (which I’ve learned is the correct word for the flickering white/irridescent lights–maybe if I was using it, I wouldn’t get the crazy look?). It’s funny to read all this stuff about how migraines are usually unilateral, because mine so rarely are; they often start on the right side, but within the first few minutes are bilateral.

Since a) I haven’t had a basilar type in almost two years and b) this started as a sinusy-type (I forget the right word for it, which I think is fair given my head fucking hurts) and is quickly moving into an all over the head kind, I’m going to try this imitrex stuff. And see if I can eat and have some coffee (both usually also help).

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.

This post to be elaborated on after I’ve eaten: where are all the aspie girls? Being diagnosed with nonverbal learning disorder instead.

Edit 9/15: I got so excited I told my therapist instead and forgot to update here. Am working on a post.