It’s like this.

(In retrospect this seems horribly pretentious, I’m sorry, but I finished it so you get to see it.)

It’s like this.

Living with a disability is a struggle.

There are bad days and good days, and there is always something worth living for, but it’s a struggle sometimes, or maybe even most of the time.
Sometimes the things you struggle with are a fundamental part of your disability and there’s no way around them, and you grieve for the things you’ll never be able to do. Sometimes, if you could just get the right equipment, the right medication, the right assistance, your life would be pretty great. Sometimes you still can’t get those things.
Sometimes your disability brings things into your life that make you happy and proud. Sometimes you’d take a cure in an instant if there was one.

Living with a disability is a struggle.

Hating yourself is a fate worse than death.

It’s one thing to struggle sometimes.
It’s another to spend every minute of struggle feeling ashamed, feeling unworthy, mentally tearing yourself down for struggling, for needing help, for not being normal.
What good is it to have adapted equipment, accomodations, medications, if you feel weak and worthless every time you take a pill? If you feel inadequate because you can’t do things the same way others do? If you hate the sight of the things that help you live your life because they mark you as abnormal?

Being filled with shame, every day, for things we can’t change, is a fate worse than death.

The “acceptance, not awareness” perspective, the “neurodiversity” perspective, is this:

We can live with being disabled but we can’t live with hating ourselves for it.

No amount of hatred and anger and defiance will cure us when medical treatments can’t.

Acceptance, freedom from self-hatred and shame, will help us live the lives we have.

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11/18: Echolalia

Echolalia is a long word for a simple thing: repeating words or phrases you’veread or heard. Echolalia can be a stim— repeating words because it helps you focus, or just because they’re fun to say— but it can also be communication. For an autistic person who has a lot of trouble with language, it can be easier to repeat other people’s phrases than to put things into their own words. Some autistic people use echolalia only rarely, while some speak in echolalia more often than in their own words.

Here’s Amythest Schaber’s video about echolalia, and a post by Julia Bascom about using echolalia as communication.

This is another thing that I do, but mostly only in private. I do both the stimming-for-fun kind of echolalia and the communicative kind. My most recent fun echolalia is an increasingly long series of nicknames for my pets— many of them rhyming— simply because they’re fun to say.

I don’t generally use echolalia to communicate in everyday conversations, but it’s a big part of the way I think. I often find myself using short quotes or phrases that seem to me to perfectly encapsulate larger ideas. I’ve learned through a lot of embarrassment and disappointment that these meanings don’t really carry to other people, even if they know the source material and remember the quote. So I keep them to myself, for the most part, but they are still part of how I think.

I remember how excited I was when I realized that Tumblr tags were a perfect excuse to use short phrases to refer to much larger ideas. Now, a number of my tags are essentially echolalia.

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Numbers Guy and I are actually sort of friends now, which is really nice. We can talk to each other, and he includes me in silly things like when he goes around patting people on the head at parties, and he hugs me– and sometimes he asks permission to hug me, which is extra awesome.

He’s really an incredibly sweet person. I’m glad Sparkly found him.

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10/18: Stimming

One of the biggest concerns of parents, the biggest focuses of therapy and the biggest points of contention between autistic people and medical professionals, is variously called “stereotyped movements”, “self-stimulation” or just “stimming”.

Outside the domain of psychologists, people call it fidgeting.

Autistic people tend to fidget a lot, and in ways that are unusual or socially unacceptable (although we may also do common “normal” fidgets like nail biting, tapping our feet, playing with our hair, etc.) Medical professionals used to believe that autistic people’s stimming was involuntary, or something like the tics involved in Tourette’s Syndrome. Because of this, a lot of autism treatments have focused on “curing” stimming. Instead of viewing stimming as the visible sign of something going on inside our minds, many medical professionals thought that autistic people’s strange behaviors were meaningless and that we could simply be trained out of doing them. Some even considered behaviors to be the entiretly of autism, and thought that getting an autistic person to behave normally would mean they were no longer autistic.

(I put this in past tense, but these views haven’t entirely gone away. Although there is a consensus nowadays that autism is some kind of physical difference in the brain, which probably can’t be changed or cured, plenty of doctors still want to treat autistic people by training us to act in a more “correct” or “normal” way.)

But stimming is not an involuntary muscle twitch, nor is it an uncontrollable urge that makes us do things we don’t want to do. It is not a meaningless behavior. It is a natural part of our body language, an expression of our emotions, and a way of coping with stress.

If these sound like the same reasons that anyone fidgets—they are. Autistic stimming is not fundamentally different from anyone else’s fidgeting. We just do it more, and sometimes in different ways. (And people with other disabilities or mental illnesses, like anxiety and ADHD, can also fidget more than the average person.) For more information about this, I recommend this video by Amythest Schaber, and this post about stimming and executive function by Cynthia Kim.

Personally, I stim a lot, although it isn’t necessarily obvious to someone watching me. Since I wasn’t diagnosed as a child, I was never explicitly told that stimming was bad, but being teased and treated as weird was more than enough to get the message across. I have some specific stims that I avoid in public but do when I’m alone or around people I know well, like rocking back and forth. I try not to stim too obviously in public in general, although sometimes I don’t realize what I’m doing right away. It’s like reading something funny in a library and accidentally laughing out loud, even though you know you need to be quiet. It’s not a matter of resisting a desire to do something, but of noticing something my body does naturally and then making myself stop.

I pretty much can’t completely stop stimming, though, especially not while I’m trying to think. Almost any time I have a face-to-face conversation, I’m stimming in some way— rubbing my fingers together, fiddling with my jewelry, clothes, or hair. When I’m holding still, it’s because I’m clasping my hands together tightly, or tucking them under my legs while I’m sitting down, or crossing my arms and holding on to my elbows with my hands— the pressure takes the place of movement. These things (I hope) don’t make me look too strange, and aren’t disruptive for other people, which is something I worry about. I know what it’s like to be easily distracted by small noises, so I try not to do noisy things (e.g. clicking my retractable pens over and over) in public.

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9/18: Special Interests

“Highly restricted, fixated interests that are abnormal in intensity or focus” says the DSM 5. The most common term for these among autistic people and their families is “special interests.” Lots of people have hobbies; autistic people’s hobbies get special attention for two reasons: first, we often focus on them really intensely, and pursue them in unusual ways— wanting to learn everything there is to know about a topic, for instance, rather than wanting an activity to do. Second, we sometimes pick topics that other people consider obsucre, or silly, “Why would anyone be interested in that?” sort of things. Some autistic people focus on one topic for years, others may switch often or have several at once. For some reason the archetypal special interest is trains.

Julia Bascom wrote a wonderful essay about how having a special interest feels, called “The Obsessive Joy of Autism”, which you can read here.

As for me, I don’t tend to focus on one interest really intensely, but I do have a special-interest-ish way of going about a lot of my interests. I can spend hours reading though forums and user guides and wikis for my favorite computer game… instead of actually playing the game. Sometimes I read information about games I don’t own and never even intend to play, like the descriptions and vital statistics of DnD monsters. (Small evil ants. Medium-sized evil ants. Giant evil ants. The spell you can use to summon evil ants, and what level you need to be to get each size. etc. etc. etc. To me, this is a lovely, soothing progression of information.) I can also spend hours using Ravelry’s knitting pattern search function, finding the perfect pattern for the hypothetical hat or sweater I’ll probably never make. I find reading and sorting and collecting information to be soothing.

I do feel the obsessive joy that Julia Bascom talks about. I have a whole host of science and history facts that are so! cool! which I try to avoid boring people with.

That’s another autistic trait, by the way– having one all-consuming interest + having some difficulty with social interaction = “infodumping” lots of facts that are fascinating to you but not interesting to your conversational partner. I’m pretty good at controlling this urge, I think, but I definitely have it.

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Cuteness for Sparkly

Have I mentioned that ey sometimes naps in eir suits? Ey comes home from work and goes straight to bed. Jacket and nylons and sometimes ID badge and all.

To me this is extremely mysterious, especially since I’m already mystified by how quickly ey falls asleep. This afternoon ey handed me my laptop and asked me to put on a radio program, and then fell asleep within the first minute or two. Ey had to ask me later what program I had on. Ey did half-wake at one point when the cat walked across eir chest, but I’m not sure if ey remembers that.

I think it’s sweet that ey likes me to be there while ey naps.

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8/18: Hyperlexia

The closest thing I have to a specific “splinter skill” or “savant skill” is my ability to read. I don’t know exactly when I started reading, but my parents have told me that I learned to read very well at a fairly early age. I can cite a couple of full-length novels, aimed at adults, that I read while in elementary school. I was not only able to read– to look at words on a page and say them out loud– unusually well, but also had very good comprehension of what I read.

There’s a term for people who are sort of like me in this: hyperlexia. But that usually implies being good at reading in the page-to-sound sense while also lacking reading comprehension or having other difficulties with language. I first learned about hyperlexia from Mel Baggs. You can read some of hir (Mel is agender and goes by sie/hir pronouns) posts about hyperlexia here and here.

I’m inclined to say that I am hyperlexic, and I find it frustrating that the researcher quoted in that Wikipedia article thinks that “autistic and hyperlexic” is a single subtype, as if autistic people all have the exact same capabilities with language. My personal speculation is that “decoding”, reading comprehension, and expressive language (and many other aspects of language) are all completely separate, that someone can have any combination of talents and impairments in different areas of language.

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June Food Diary

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7/18: “Splinter Skills”

Next, I’m going to talk about several traits that are in the DSM 5 criteria and have been in the DSM for a long time. I began by talking about the autistic traits that I’m most aware of in myself, the differences in how my brain works that have the biggest effects on my daily life. These next sections describe some visible, outward autistic traits that tend to stand out most to people around us, the things that mark our everyday behavior as strange but which we may not notice until they’re pointed out to us.

When you’ve seen autistic people in fiction or heard about us on the news, you may have heard about the idea that some autistic people, although disabled in some ways, have one exceptional talent, one subject on which they not only don’t seem disabled, but are much more skilled than the average person. Older media use the term “idiot-savant” for a person like this. Newer terms are “twice exceptional” (used in education and meaning, to put it crudely, a person who’s exceptionally bad at some school subjects and exceptionally good at others) and “splinter skill” or “savant skill” (referring to the skill that stands out above the person’s overall “level” of ability or education).

I want to note here that the kind of intelligence measured by IQ scores and standardized tests is not in any way part of the criteria for autism. Some autistic people score extremely well on these kinds of tests, others are average, others have low scores. This does not mean that those of us with higher IQs are less autistic or less disabled, or that those with lower IQs are less worthy of respect or less capable of making their own decisions— only that some of us are better at the specific skills these tests require. I generally do well on standardized tests, yet there are real ways in which I am cognitively disabled; my brain is not always capable of doing what I need it to do or what other people expect. I know people whose IQs are significantly below average, yet in certain ways they are undeniably smarter than I am, and I’ve learned a lot from them.

Anyway, it’s true that some autistic people have these skills, even if the way people describe them is sometimes pretty gross.

I don’t have a “splinter skill”, in the sense of a single highly-specific skill that I’m exceptionally good at. In fact, I’m fairly bad at a lot of the “splinter skills” that have made it into popular culture. In particular, I’m mediocre at best at mental math, and anything that involves juggling a lot of information in working memory.

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Sparkly is so cute.

Yesterday, out of the blue, ey decided ey wanted crayons and a coloring book full of abstract patterns, like the one M has. Target sadly does not carry coloring books for adults, but ey got some crayons and we went home, and I drew patterns on graph paper, and ey was very appreciative.
Eir color choices, for different sections of the pattern:
Orange and dark purple
Light turquoise, yellow, and yellow-orange
Pink, pale green, and black– to look like a watermelon, ey said.

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