I’ll update later today (it’s after midnight, it’s today!) with hair and cat photos, if I don’t completely forget. As you do. It’s snowy snow snowing outside again. Another 4″ on top of the 8″ we had (that, to be fair, had melted down by half at least) over the weekend, with possibly a couple of feet due over the coming weekend. Cannot. Escape. Fast. Enough. I like snow, but I am so sick of the whining and the not having good vegetables and the slush in my house because my door opens in a weird way and there’s no place to keep a doormat.

Have you, O Reader, ever felt like you can’t catch a break? Every time you turn around, something is happening that prevents you from advancing? Yeah. The last few months have felt like that, and I was bitterly convinced that 2010 would be better because it couldn’t be worse. I stand corrected. It can be at least the same level of suck.

Things that have happened in January since my last substantive post:

1. I fell down the stairs outside my apartment, bruised myself up.

2. I told the neuro the gabapentin wasn’t working and got very little help from him (I’m trying a hefty dose of magnesium and will be adding riboflavin shortly, as reccomended in the best book about migraines I have ever read even if she does think accupuncture isn’t a total sham).

3. The glasses I found and wanted were sold out (I ended up buying the ones with the real! wood! sides!, we’ll see if they’re as badass as they seem)

4. I negotiated/weeped my way to a resolution on my MRI bill (short version: Them: “You don’t qualify for the fee reduction because in the past 3 months you made X with would mean your yearly salary is Y, about $8,000 over the limit.” Me: “Can you not see the part where I did, in fact, make a salary under the limit? This is stupid math.” Then some weeping, and an agreement to resubmit my claim in April with all new paystubs).

5. I had to pay over $400 in taxes because my job sucks at doing their job witholding. Seriously, how could I, at around 200% of the poverty level, owe the feds money? WTF?

6. Prosper sprained his little kitteh wrist and was all limpy until the vet gave him (an expensive) shot that made him a little loopy.

7. Dollhouse ended and the finale sucked.

8. I DID NOT HAVE INTERNET AND IT WAS HORRIBLE DEATH. The internet has now been restored. You can tell, because I am alive.

9. At this point I should make a 10 point list, don’t you think? Uh, I had a serious lack of therapy. Further, my asshole insurance decided I probably only need 6 more sessions. This won’t be a catastrophe because of the moving and all that, but if I wasn’t? Jerks. Therapy is waaaaay better than drugs, even if it is more expensive. We’re working on my awareness of my tendency to be rigid and how to think my way through that. We had a really good one this past Monday about thought planning in new social situations that was super helpful. Fuck you, insurance!

10. My job continues to suck.

I am so looking forward to going down to Dad’s next week. Here’s hoping I don’t get snowed in.

First, SAD. My glasses were sold out when I went to order them. It’s been a long and crappy couple of weeks–the internet was cancelled, my debit card was cancelled (both without warning), so I have only just got it together to purchase them. NOT PLEASED. SHOUTING.

I’ve had a lot of thoughts and ideas and pictures of the cat in the mean time, but for now I am at a loss for what to write; the bad thing about blogging is the longer one doesn’t do it, the harder it is to start again.

Edit: Ebay comes through! Quickly!

1. What appear to be very similar (the auction is for the first colour shown) to the ones sold out.

2. Real wood.

3. Possibly cute but too big?

I really like the Aspie Teacher, and need to add her to my blogroll. I usually re-discover her blog when I’m playing on the autism hub and a new post comes up, and it’s always insightful and very helpful.

I’ve been thinking about perseveration since New Year’s Eve, when I read this post by her on the subject.

The idea that perseveration happens with emotions is one I had never considered, but is so true that I read it and immediately sent it to Kitty (“Yes. This!”). I tend to think about perseveration in the way I think most people do: obsessing about a special interest and having a hard time changing topics, fixed patterns of doing things that sometimes look a bit odd (like lining up toys rather than playing with them ‘correctly’ or having to eat one’s food in a certain order), echolalia. This post has really shattered those thoughts for me, made me acknowledge the depth of my tendencies towards perseveration–even when I seem completely normal, at ease.

There isn’t a time or age in my memory which I can point to and say I didn’t have perseverative behaviour and thoughts; some level of this is probably normal, because like with all things on the autism spectrum, it’s not the case that the behaviour itself is abnormal, just the severity. I have always tended to pick up a special interest, fixate havily upon it for a varying length of time, and then let it go. I think that the way that I played with my toys was probably a little odd–I remember that I enjoyed greatly dressing my dolls, but they didn’t tend to do much on the whole. I enjoyed setting up a scene, but not creating a story and then playing them through it. I read and reread the same books (and lots of new ones, too, but there are a handful of books I still reread when I feel stressed), many well below my age and reading level (the Baby Blue Cat is always soothing). I can’t remember a time when I did not repeat conversations (or rehearse conversations to come) in my head and sometimes outloud. But much more strongly than any physical types of perseveration, I emotionally perseverate.

What this means is that when I experience a strong emotion–the type most likely for me to notice I’m feeling (1)–I tend to get stuck in a pattern. I know my friends and family must be rolling their eyes, because it’s obvious, but I’d never thought of it in these terms and it’s actually really helpful and enlightening to me. Aspie Teacher describes it as a loop, like a broken record. I think it’s sort of like those toy trains with tracks in a circle. Once things reach a certain, unspecified level of feeling–once I’m on that track–I can’t stop going around it again and again without help. That help may be time, or the right input from someone else, or a distracting thing (though distracting isn’t a good long-term fix).

Perseverating makes you feel you’re trapped in your emotions, and they go on and on because no one else understands you enough to resolve the situation. Or you’ll think the situation is sort of resolved and then a few minutes later everything comes rushing back and you’re saying the same things all over again.

I fought with Stina and Dylan, about a week before Christmas. We’re okay now, as far as I know, but thinking about perseveration in this way has helped me work out why it happened in the first place. I have an unfortunate tendency to hold a grudge (which is really just long-term perseveration and an inability to forget?) and can’t always predict the small things that will suddenly become BIG THINGS and lead to this. The trigger was pretty stupid, and definitely not worth fighting over, but I got stuck in a thought pattern of being upset and every time I thought I was done, it all rushed back to me. Trying to explain to my mom and Kitty just felt like reliving it. I could not stop thinking about what was happening and my anxieties about the situation.

Venting online is kind of like winning a battle but losing the war – you may feel a temporary boost from the sympathy you get, but it won’t help you stop perseverating.

This is so true. But I would add that venting, really at all, is not very good for me. Explaining once is enough, because after that it just becomes part of the cycle of upset.

Knowing this now, I have some hope that I’ll be better able to catch this and stop it in the future. I also will be able to explain it to my therapist and hopefully make some sense so we can work on appropriate strategies.

So, I don’t think it’s news that Autism Speaks doesn’t speak for actual autistic people, nor their families, nor anyone who gives more than half a shit about things like equality, disability rights, neurodiversity, or the rights of children. You know, real trivial stuff.

And yet, they can surprise me. ABFH reports on a horrifying situation come to light, where families with autistic kids–one of which was trying to open a school for kids on the spectrum–who were displaced by Katrina were denied any help from Autism Speaks. The family due to open the school was used in promo material by Autism Speaks, but never given a cent. Read more about it over there at her blog.

Last April (did you know my birthday is World Autism Day? It’s less awesome than it sounds), TJ Maxx (a chain of discount stores, which take clothing and housewears from large department stores and sell them at a hefty discount, and sadly often have awesome and obscure chucks) sponsored a drive for Autism Speaks. I haven’t been able to bring myself to go back since I saw the front window covered in puzzle-shaped pieces of paper, each signifying a dollar given to this do-no-good “charity,” given by individuals duped about their usefulness to the community. Most people don’t know that only 4% of the funds Autism Speaks receives return to the communities. It’s time for more than just autism advocates to protest this bullshit. Every thinking person should be appalled.

Autism Speaks definitely does NOT speak for me.

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:

First of all, I think that this expresses my current mood best. There is a box of sugar cookies behind me, taunting.

True story: I once made Dylan a sugar cookie fiend out of fleece and it plays the sugar cookies rampage. I am aware that you are stunned at my awesome.

I’m also currently stunned at my awesome, for altogether different reasons. I shall elaborate.

So, my job sucks. This is actually not true. I like most of the individual elements of my job (medical filing, working with kids, working with kids who’re autistic or crazy or sad, playing on the internet all night), but there are two parts that suck: the fact that my shift is night shift, and the fact that I cannot stand my coworkers. I’m really not sure if it’s an autism thing or a smart thing (or if I could separate the two anyway), but I find them endlessly tedious with their social games and talking about things which do not hold any interest for me. This has been a long-standing and escalating complaint, from “You know, I really don’t have anything in common with these people” to “Not only do I not have anything in common with them, but I wish they’d stop telling me about their kids and little league and parking tickets–even I can tell someone doesn’t want to listen if they put on headphones, so why can’t they just shut up when I do it?” to “OMG STFU I AM WATCHING HOUSE” to my sobbing on the phone to my mom last Sunday morning that I really didn’t think I could come back in Tuesday (that would be right now, as I’m typing–technically Wednesday morning, but that doesn’t count).

She came up with a brilliant suggestion: move to Atlanta. My dad lives there, and will gladly put me up. I can quit this job in 4 months when my lease is up, move to Greensboro temporarily while I clean the apartment and then go to Melbourne, and then finish moving southward and get a job there. It’s a very big city–my favourite kind!–and full of healthcare related shit and IR shit, so I should be able to find something.

I’m scared, because my only friends are Kit, Stina, and Dylan, and I won’t have any of them. But this is why there is an internet. (This is also why there is an internet.) I will hopefully be able to meet some local Asperger’s/autism groups, maybe join a choir, maybe take up dancing again? I can go to school as long as I find a job that pays me enough (and I plan to try to stop by Melbourne Uni to determine exactly what they’ll want from me for the med school), and Prosper will keep me company.

As someone who perseverates to the point of panic on incomplete plans, I have a sense of restfulness and lessened anxiety for the first time in months.

Now I just have to convince my bosses that my plane ticket got cancelled so I don’t need to use all of my vacation time in May!

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.

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.

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