Two important things:
1. My very good friend Stina is 25 as of today. I have made her an awesome present of awesomeness, which I’ll discuss after her party as she reads this blog.
2. I love anagrams. I especially love challenging anagrams. And I am here to tell you that there are at least 1001 words that can be made out of the phrase “the very hungry caterpillar.” Kitty has asked me to stop and start using new words (I think I’ll try “where the wildthings are” or “the baby blue cat and the whole batch of cookies”, though that last one is really long and so might be too easy). Please don’t suggest new words if you see one I missed–I like the palindrome number.
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.
As is often the case, I find myself inspired by a post on the hub, this time about the myth of the autistic person in their own little world. This seems to be one of the most pervasive misunderstandings, to the point that it has entered the popular subconcious as a “truth”–despite it being nothing of the sort.
Usually, the concept is presented as something of a travesty: autistics (especially children) are in a “world of his/her own” and need to be “drawn out” by parents, teachers, support workers. This comes out of a misperception of the reality of autism: it is viewed as a (possibly semiwillful choice of) emotional and social isolation. In reality, the isolation that autistics feel is only one part of the disorder; sensory and other perceptual differences are at least as important and all three blend together in individual combinations. Autism is better thought of as autisms, plural–each affected person’s precise combination of impairments will be unique. For me, my sensory and perceptive issues are a bit worse than my social skills, but my theory-of-mind is only good when I’m calm, and my emotional skills are quite frustrating (and not just for me). All that means, in the end, is that this is my autism. It bears no strong reflection on any other spectrumite except in the sense that we all share some difficulty in each of the three areas in the classic triad of impairment: communication, social skills, and imagination.
(For the record, I’m at a loss how autistics are supposed to each have a world of our own from which we must be coaxed if we’re also meant to have impairment in the imagination. The two ideas seem contradictory, given most people have a simplistic idea of imagination.)
What non-autistics don’t seem to realize is that everyone has “a world of his/her own.” Everyone has the ability to withdraw when overwhelmed by a situation. An easy example is this: you are riding public transport–a bus, a subway, a tram, what have you–and alone. You have nothing to do, like read a book or play on a laptop, and no one to talk to. Most people, in this situation, might find themselves staring out a window (or trying to keep their balance on an overfull train). What do you think about while you are in your own world? Something that interests you, that entertains you? Perhaps you contemplate the people in your life and how to strengthen your relationships with them. We even have a phrase for this state: “lost in thought.”
But this is no different than being autistic; like most of the traits in autism, the difference is in the degree. Autistics may appear to be lost in thought more often and for longer than the average NT person.
The reason comes back around to some of the other differences that make someone identifiably autistic, specifically sensory and perceptive differences. What if you perceieved light–sunlight, lamps, any light–as brighter, more intense, than the people around you, as if you were the only person outside on a sunny day while everyone else had sunglasses? What if you had acute hearing, able to hear minute tonal differences or far away sounds, but lost the train of conversations when there is background noise, or found your hearing mysteriously shutting itself down because you are so overwhelmed by sound? What if the feel of ordinary textures, in your clothing or your surroundings or your food, felt twice as rough, or soft, or hard, or squishy? And what if you could make all of that go away, for a brief while, by going on the retreat? You’ll have to go back to it eventually, but a break makes the overwhelming way the world can feel so much more tolerable. This isn’t even to address the way social interaction, with its subtleties and heavy nonverbal (and often lost on autistics) components, can be just as exhausting–if not more so–than simply adapting to the physical environment.
In this light, trying to “draw an autistic out of his/her own world” is not just misguided and poorly conceptualized, but potentially cruel. Everyone needs some down time to process what’s going on around them. Introverts need more than extraverts, and autistics may need even more. Trying to engage with someone when they are not ready can lead to tantrums, or at least snapping (like before the Kate! concert when I was in a decidedly need-to-be-alone mood but was unable to fulfill that need).
Engage with autistics. Treat us with the dignity and respect you would show anyone. And when we tell you–verbally or not–that we need a break, respect that. Don’t worry, we’ll come out of our worlds on our own, just like anyone else, once we’ve had sufficient time to work on whatever we’re busy working on–just like anyone else.
Can’t do cartwheels anymore
Wrap me up against the cold
I’d be happy if I wasn’t bored
Went down to Mom’s over the weekend–my weekend, anyway. I went down on Sunday and came back late Monday night. We put up a wall vinyl she’s been wanting, which looks pretty good. She fed me all the foods I can’t get here (which is good for my health, really): greek, cheap takeout hibachi, and bagels. Mmmm bagels. I now have a stash in the fridge (my favourite bagel is only made by 1 chain that I haven’t found outside of NC).
While I was there, she had her radiologist buddy (who I know–we gave them kittens, once) look at my MRI. I have a small dot that appears to be a migraine-related bit of hyperintensity, and a cyst in my sinus, but am otherwise clean and clear. Now if they bring up that spot at the doctor’s, I can not panic.
Prosper has been super needy since I came back; apparently almost two days away from me is too much to bear. Suck it up, cat! He is also terrified of the window seat thing Mom sent with me–it had been one of her cat’s favourites. No wonder.
The weather changed last night, and it’s cold and rainy. Consequently, I have the sniffles. I also burned the crap out of my hand getting a pizza out of the oven, so it’s pretty much fail city around here.
So, I went to the doctor for my 2 week follow up after discontinuing topamax last Friday (the 2nd).
He was still pretty skeptical of my claims of possible seizure activity. I haven’t had another event with the nystagmus and all of that, but I’m still having daily rounds of hiccups (fun) and some interesting scintillations. I’ve kept a headache diary, by which I mean I’ve written them down in my planner with details about sensitivities and auras, and I’m back to between 1 and 3 migraines a week (though excedrin helps about half the time, which is excellent). If I have an aura, the excedrin will almost certainly help, which makes me wonder (haven’t brought this up with the doc) if I’m having a different sort of headache sometimes. My migraines almost always begin in the occipital region, mostly on the right but a moving towards being bilateral, and spread along my side until they my temples and sinuses, at which point all bets are off because my head fucking hurts. I try to get to them before there is sinus involvement. Sometimes, maybe 1 in 4 or 5, I notice the right temporal pain before the occipital pain. The pain is pretty variable–if I have an aura, it’s going to hurt less. I would say they’re all moderate, between 4 and 7. I sometimes have tension headaches, which start as an all-over pain and are a 3-4, and these go away without trouble with the application of any pain med–excedrin, tylenol, ibuprofin, whatever’s on hand.
The doctor wanted me to see a neurologist, which I’m not super enthusiastic about. I know that I probably should, but I’m concerned for insurance costs and making my life even more difficult trying to get insurance if I change jobs. He decided that we’d try an opthamologist and an MRI, first; I was so tired that I was willing to do most anything he reccomended.
The opthamologist was nice, but scary. I do not think I will go into opthamology, though I find the actual anatomy interesting. I freaked out when they touched my eyes and I’m lucky I didn’t scratch my corneas. We discussed the possibility of acute angle glaucoma from topamax (he claims to have had 2 patients with it right out of med school, so he suspects it’s more common than is claimed), but I’m free and clear (I didn’t expect to be told about surprise glaucoma, anyway). He believes strongly that everything is just a side effect of my meds and will go away with time (gee, thanks, nothing we can do to fix it now?), in a way that made me wonder what my doc had written in the chart he sent over. “Crazy girl thinks she’s having occipital seizures. Did I mention she goes to therapy? Cah-ray-zee.”
Oh! My appointment with him was a surprise appointment. The doctor’s office said they’d make my appointments for me, which I wasn’t really excited about but felt was a good idea (I cannot remember to call places to make appointments to, probably literally, save my life). So on Monday the 5th, while getting ready to go see KATE!, I got a call telling me my appointment with him was tomorrow afternoon. Ha! And my MRI was on Friday.
So the MRI was fun. I mean, I’m pretty entertained by medical procedures, because I have a fairly good layman’s grasp of what’s going on and am well-versed enough to understand when other things are explained. I’m probably a super obnoxious combination of enthusiastic, curious, and anxious.
I got to the hospital at the ass-crack of dawn, just after getting off work and changing into metal-free clothes. They only other time I’ve had brain imaging (a CT) was in Melbourne just after getting diagnosed with migraines, a precautionary “You don’t have brain tumours, right?” measure. It was without contrast and showed pretty much nothing; this time I got an IV for contrast.
Hey, guess what? I HAVE A BRAIN. It’s amazing, I know.
I’ve looked at all of my films, and there’s one set where I guess I moved. Unless they’re supposed to look like that. The internet is down at home, so I can’t compare easily. In the rest, it is evident that I have a brain, and no apparent giant tumours or anything. That’s pretty much the extent of my diagnostic skills.
As far as withdrawal from topamax has gone, the palinopsia is mostly gone (though it persists on bright things next to a darker background, like my chair against my dresser), and I’m still possible-seizure-creepiness free. I’ve had a few tunnel vision and scintillation bursts, which remain unexplained. My appetite (and weight) are back up–my appetite possibly more than when I started the topamax. I lost 10 on it, and have gained 5 back, so I hope this is where it ends. My word-search and forgetfulness probelms are getting a lot better, though I never expect them to be “normal”–I still have pronoun issues when I’m really relaxed! It’s asking a little much to reach normalcy.
On the subject of word searches, did you know you can make at least 855 words out of the phrase “the very hungry caterpillar”? Stupid restaurant only gave me 10 blanks for this challenge, so I had to prove them wrong. I think I definitively have.
I have not, contrary to what it may look like, dropped off the face of the earth.
Since my last post, I have:
1. Gone to the doctor, quit the useless imitrex (anyone need some? I have leftovers), and been scheduled for meetings with the opthamologist and an mri.
2. Done those things. The mri was today (well, technically yesterday–Friday morning). Were you aware that I have a brain? (I must note before I forget that, ha, in keeping with logic about NVLD and autism, my left hemisphere appears to be just slightly bigger than my right on all of the scans. I laughed.)
3. Been ill.
4. Saw KATE! With Ben Folds, who was also quite nice, but the important thing here is that I saw KATE!
Each of these deserves a post, and maybe I’ll get the chance to do that stuff while I head down to Mom’s house to help her put a sticker on the wall and recover my aspie book. I’m also hoping to list some of the 20 million things I have for etsy, which takes priority since I am not Dooce and no one pays me to blog. I mean, hell, no one really reads this except Kit–at least, not regularly. I think even Mom quit. So, they’ll happen. Yep.
My name is Ali, though sometimes it's Eliot.
I have many tumblrs, which you are welcome to also visit:
The Polite Yeti - My personal tumblr, full of silliness.
Fuck Yeah, Kate Miller-Heidke - the only active Kate fan site, which is baffling.
The Branden Rose - the only active Monster Blood Tattoo fansite, which is less baffling.
I also have a semi-successful etsy shop, which you should visit, below.
Please buy things from me:
A brief history:
- January 2012
- December 2011
- November 2011
- October 2011
- September 2011
- August 2011
- July 2011
- June 2011
- May 2011
- April 2011
- March 2011
- February 2011
- January 2011
- December 2010
- November 2010
- October 2010
- September 2010
- August 2010
- July 2010
- June 2010
- May 2010
- April 2010
- March 2010
- February 2010
- January 2010
- December 2009
- November 2009
- October 2009
- September 2009
- August 2009
- July 2009