Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Thursday, February 28, 2013

It's Not About You

Trigger Warning: Erasure of disabled people from their own stories

I know that video isn't about me. Here's the thing: It's not about Mitchell either. No, really. How much of it is  about how Mitchell feels, what Mitchell wanted, what Mitchell did? Versus how much of it is about everyone else talking about how inspirational it is, how it was such a nice thing to do for him?
It's not about Mitchell. But it should have been.
And what would it have looked like if it were really about Mitchell?
There would probably have been no video made. If there was, he would have been the one to run it. His shot might have been in it, but probably not, since he didn't know it was coming. It would have been him talking about what happened, how awesome (or not!) he thought it was.
More likely, it would have gone the same way the tradition of leaving managers and sometimes injured seniors (especially injured captains!) goes, had it really been about Mitchell. Suit up. Get put in. Teammates try to help him get a basket. He gets one or doesn't, and everyone forgets about it a week later because it's just what teams do for their managers. It's not about him being developmentally disabled and obsessed with basketball. It's just about him being the team manager. The school newspaper might publish a short thing: "Team wishes farewell to their manager, plays him in final game."
But it wasn't about Mitchell. He barely talked. He was barely shown. It was all other people talking about how wonderful they were for doing what they did. Yeah, they erased him from what should have been his story. He became the Object, not the Subject.
When you tell me that these sorts of things are not about me, you are more right than you know. They're not about the disabled people in them. They're meant to inspire abled people, and they're about the abled people around the disabled person.
That's the problem.
When the disabled person is a passive object in inspiring abled people, it's all kinds of icky. I don't care how good your intentions were. Well, that's not really true. If your intentions are as good as you think they are, you'll care more about the fact that it's not having the effect you wanted than just to be upset that people aren't seeing you as a good person for it. You'll want to know how to fix it. You'll want to know what you should do.
It's listen to the people who are telling you that you're Doing It Wrong, by the way. And listening to why. And learning the difference between "I recognize your good intentions, but it's not working, it's hurting, here's why" and "You're a horrible person and you fail and I'm going to s*** all over you." And learning. Learning hurts, because you have to recognize the bad things you did before you learned. But then you can treat disabled people like people, not as objects for your inspiration

Tuesday, February 26, 2013

Intent... not magic

Trigger Warning: Ableism, Inspiration porn.

(I don't like the word inspiration porn. It insults actual porn. But that's the word I'm looking for...)

I get that people were trying to be nice. Really. But... not OK. This video is not as nice as you think it is.
It squicks me.
Everyone is sharing this around again, and talking about how sweet it is, and how inspirational. And you know what? Everyone was trying to be nice. They were. And they patronized the team manager in the process. They probably patronized him every game, but I don't know that for sure, I don't have video of that. 
I could get into all kinds of theory, but I shouldn't need to:
I am developmentally disabled. I'm no better at basketball than the manager. No, really. If you had put me out on the court, I would have missed. Every shot. And I would be pissed if someone did that to me. 
I played sports all through high school. I ran cross country. I was, for four years, the slowest person on the team. I was only able to stay on the team at all because it was non-cut. And I was the slowest by quite a large margin, too. The girls whose times were counting were running their 5k in 19 minutes and less. In four years, I never ran my 5k under half an hour. My mile time? Right around 10 minutes. Four years of cross country, and I am a worse than average runner looking at the general population.
But people insisted that I was doing a great job. I did no such thing. All I did was be too stubborn to quit, because that's what I do. And if I had been praised for that, everything would have been fine. Because it was for something good I actually did.
But no.
It wasn't about my stubbornness. It was about how I was doing such a good job running. Yeah, no. I wasn't. I was doing a pretty fail job running. 
I've been in that position.
In spring track (I got cut from softball,) they generally had me run the 800. There is a reason they had me run the 800. They put me in the mile exactly once. I got lapped. By everyone. Yes, everyone. One kid was about 10 yards short of double-lapping me in a four lap race. And they didn't let me finish, because there were other events to have. Not being allowed to finish was mortifying, I won't deny it. But the stuff I took on a daily basis about how great a job I was doing because I was too stubborn to just quit already? That was worse. The time they didn't let me finish, I was embarrassed, and that was pretty much it. The times that people were patronizing, I was embarrassed, angry, and expected to be grateful for it. And no one listened when I told them I wasn't. They kept lying to my face about how great a job I was doing.
It left scars.
I have trouble believing the praise I get from anyone, ever, still. Because what if it means that I'm not actually doing well and they're pulling the same thing as they did in high school? They only do that when you're so bad at it you're not even seen as really being competition. Am I really that bad at it? Or am I actually doing well? I thought I was actually doing a good job, and then someone praises me and suddenly I'm not so sure. 
It doesn't help that people still do this to me. 
You might wonder how they can. Well, there are drills we do at practice in Ultimate where yes, my motor issues come out so obviously that I really do look like the obviously developmentally disabled kid they're letting practice with them to be nice. But the coach tells me I'm doing great. The captains tell me I'm doing great. As I pick myself up off the ground because I couldn't even figure out how to keep my feet under me while failing to do the drill properly and the entire rest of the team, while tired, has done it 30 times correctly and I've messed it up five times, falling over from three of them. Yeah, not doing great. If you want to praise my stubbornness, go ahead, but don't tell me I'm doing a great job just in general, because I'm not. And I know it. And that is why I have trouble believing even genuine praise, now. That is why I have social anxiety. Because people lied to my face and kept doing so as I called them on it and wouldn't even admit to the fact they were doing it and expected me to be grateful for it, at that. 
Actually playing, I'm not that bad. I'm not great, probably not even average, but I'm passable. I'm actually good enough at the stuff we do in a real game that it's worth keeping me on the team, especially since we often wind up playing with only one or two subs, but from practice, you wouldn't know it. And at practice, they do it. Still. 
And they insist that I'm just being hard on myself and I'm really doing a great job. 
I'm aware of what's going on around me, folks. Don't patronize me. And don't patronize other disabled people. Even if that manager did want to be put in (I could believe it,) the way the member of the opposing team acted was still well-intentioned patronization and the way the video was made can't even be given the "well-intentioned" qualification. It was just patronizing, plain and simple. How much of the video was other people talking about how wonderful it was, compared to how much was the manager actually talking? Wonder why?

Possible "Autistic People Are..." Ideas!

Yeah, I'm being all organized this time. Have ideas, and I'll be reposting this on Autistic People Are as well.

So, here's some ideas I think anyone can write, Autistic or not (though a non-student writing classmates would be weird, that sort of thing):

  • Autistic people are people.
  • Autistic people are as diverse as non-autistic people.
  • Autistic people are our co-workers.
  • Autistic people are our classmates.
  • Autistic people are not here for inspiration.
  • Autistic people are not mysteries to be solved.
  • Autistic people are not tragedies.
  • Autistic people are awesome.
  • Autistic people are not puzzles.
  • Autistic people are the experts on autism.
  • Autistic people are not all children.
And here's some I'd love to see that should come from an Autistic person who is *insert whatever we are:*

  • Autistic people are teachers.
  • Autistic people are writers.
  • Autistic people are engineers.
  • Autistic people are parents/mothers/fathers.
  • Autistic people are historians.
  • Autistic people are creative.
  • Autistic people are farmers.
  • Autistic people are activists.
  • Autistic people are advocates.
  • Autistic people are firefighters.
  • Autistic people are researchers.
  • Autistic people are teachers.
I think you get the idea? There are certainly more you can write about, these are just to get people started. 
I'll probably either be all meta again and talk about choosing a topic, but if not, I might go with "Autistic people are researchers" since I am a researcher in nanotechnology and all. I'm not sure. Write ALL the things! Oh, and maybe I'll write one in Chinese. I think that would be cool.

Note: This is run by Autistic people, and so all the suggestions are in terms of Autistic people. If you are a person with autism, you can write a "People With Autism Are" and submit it. We respect your self-identification. If you are going to tell us what to call ourselves, however, that is not OK.

Monday, February 25, 2013

Tired but Happy

Yesterday was the "Autistic People Should" flash blog. I got some great help there, with lots of people boosting the signal, lots of people writing. There were people who did multiple things, so my post numbers and my people numbers are not the same, but there were seventy-two different posts (at last count) that were longer than a sentence, most of which were full-length blog type things. Of those, Karla made three slides on her ASD Page, which reaches a lot of people. There were fourteen different posts made by people who just completed the sentence, some of whom made longer posts at other points in the day. The allistic people who wrote did so in respectful ways, even when the rest of their blogs were problematic. (Yes, there was one proper curebie who wrote an "Autistic People Should" post, and the main issue I have with the post itself is the statement that person-first is better and what we should use. It's only better for describing people who want to be described that way. The rest of her blog is pretty triggery, though. Do not recommend.)
Basically, I'm really happy with how this went.
I'm also exhausted. I spent most of yesterday alternating between resting and tracking down/putting up posts and links. I didn't realize how tiring that could be until I did it, and goodness, am I tired.
And I get to do it all again next Saturday, for Autistic People Are. I'm going to have more help with that one, since Brenda of Mama Be Good said she could help with it and I've added her to the blog. But it's also going to be potentially much bigger. Because we're actually doing a press release. Like, that means that people who aren't already following internet autism and Autistic communities will know that it's a thing. There might be more tracking down to do for more posts, and that's wonderful. It's also exhausting.
When I declared flash blog, I figured I might get ten or twenty posts per thing, not 80+ for the first and who knows how many for the second. I've already got a submission for Autistic People Are, it's going to be better organized, and it has a longer time of people knowing it exists before it actually happens. Oh, and that press release. That's a thing. 

Sunday, February 24, 2013

Autistic People Should Be Considered The Experts On Autism.

Nekobakaz has it right. Autistic people are the experts on living in Autistic brains. We've spent our whole lives Autistic, after all. 
And mainstream autism experts get so much wrong, and they do it so obviously. Think about it. 
Musings of an Aspie tells us that Autistic people should question everything. She tells us to question the experts who think:
  • Autistic people don't realize others have minds.
  • Autism is an exaggeration of male habits.
  • Autistic children play "wrong" because they lack creativity and imagination.
  • Autistic people don't get married or have children. ("Autistic People Should...")
I do, of course, question them. I question their ideas, and I question their expertise. If they were truly expert, they would not come up with things that are so wrong and be so insistent that these falsehoods must be so.
Because, well, "everybody is the world's foremost authority on what's it's like to live inside their own body" (Wetering.) I would add that everybody is also the world's foremost authority on what it's like to live inside their own brain. It shouldn't need adding, since the brain is part of the body, but people do often separate the mental from the physical and autism is in how the brain is wired. 
But so-called experts deny this. So-called experts tell us that Temple Grandin's books are worthless for understanding autism (they are privilege denying, which is different.) When an "expert" says that Grandin "cannot possibly get the concept of what it is like to be herself" (Grace 96,) we know it is time to question.
So I do.
And it's not just me, either. Dr. Grace wants to "Occupy Autism Expertise" (Grace 96.) Paula is having a TweetChat with Autism Womens Network about the "Autism Experts" site, where Autistic people are the autism Experts. Amy says we have the most valuable information on autism because we live it every day (Sequenzia.) Karla thinks we should lead the discussion on autism (Fisher.) Flashbloggers covered the idea that Autistic people should be heard, with one explicitly stating that we should be considered the experts on autism. 
So we should. The closing thought of the flashblog itself? Autistic people should be considered the experts on autism.

Works Cited
"Autistic People Should..." Web log post. Musings of an Aspie. N.p., 23 Feb. 2013. Web. 24 Feb. 2013.
Becker, Corina. "Autistic People Should Be Considered the Experts on Autism." Web log post. Wibbly-Wobbly Ramblings. N.p., 23 Feb. 2013. Web. 24 Feb. 2013. <>.
Fisher, Karla. Autistic People Should Lead! Digital image. Karla's ASD Page. N.p., 23 Feb. 2013. Web. 24 Feb. 2013.
Grace, Elizabeth J. "Autistic Community and Culture: Silent Hands No More." Loud Hands: Autistic People, Speaking. By Julia Bascom. Washington, DC: Autistic, 2012. 95-99. Print.
Sequenzia, Amy. "Autistic People Should..." Autism Women's Network. N.p., 23 Feb. 2013. Web. 24 Feb. 2013.
Wetering, Jodie. "Autistic People Should..." Web log post. Letters from Aspergia. N.p., 24 Feb. 2013. Web. 24 Feb. 2013.

Saturday, February 23, 2013

Autistic People Should...

This post also appears on the Flash Blog site, which you should totally be looking at. 

That's what this flash blog is about, right? What Autistic people should do?
And I thought, and I thought.
It's hard to come up with a universal should for any group, and part of the problem that Autistic people face is that people tell us what to do.
Autistic people should stim more? 
That's kind of true, but a friend of mine basically wrote that. He didn't call it that, but he wrote it. It's going to be linked here, once it's posted. 
Autistic people should continue being awesome?
It's true, but it would really only have worked if I had thought this through enough to put Autistic People Are as the first flash blog and Autistic People Should as the second one, so that I could have done Autistic People Are Awesome first. 
Autistic people should do whatever the heck they want?
True, and something I probably could write a post on, but it's not going to get Googled much.
Autistic people should have better Google autocompletes!
It's meta. That makes me laugh. A lot. I like it! If only I could get it onto the list of Google autocompletes. That would be hilarious.
Autistic people should use meta-humor!
Actually, I don't know. A lot of my Autistic friends really do like meta-humor, and I like it. But I think that this would confuse people. I am at least trying to reach people and have an effect here, after all.
Autistic people should be the ones you're listening to about autism?
Yeah, but I'd be preaching to the choir there. You lot already read my blog. You're already listening to an Autistic person about autism. Better to leave that one to a neurotypical parent, since that, "do whatever the heck they want," and "have better Google autocompletes" are pretty close to the only ways they can finish that sentence without it being another case of neurotypicals saying what we should do. It's not the exact problem that led to this flash blog, but it's pretty close to it. 
So I've got nothing.
I can write about what this specific Autistic person should do. 
I should keep being awesome.
I should keep writing, because if I don't I'll explode.
I should keep doing nanotechnology research.
I should find better supports for the fact that I've got some executive functioning issues.
I should accept my abilities for what they are and work as best I can with what I have.
I should actually work on compiling essays into a book.
I should do my Chinese translations.
I should find my passport.
I should write that guide to studying abroad while Autistic that I was talking about with the Office of International Education.
I should make sure to leave the world better than I found it.

Friday, February 22, 2013

Nothing So Passive

Trigger Warning: Silencing, possibly erasure

"You shouldn't let it define you :)"
"You shouldn't let it define you :)"
Let it define me? Is that really what you think this is? My decision to call myself Autistic, to tell you that I am Autistic and that's who I am and that's fine, in fact, that's awesome and I'm awesome is nothing as passive as letting my autism define me. I am more than just autism, of course, just as I am more than just an engineering student and I am more than just a blogger and I am more than just Jewish and I am more than just a singer. I could go on. When I call myself any of those things, you don't tell me how I shouldn't let those define me. Maybe with those things, you realize that this kind of statement is nothing so passive?
Because it's not passive. It's not even something like passivity. In fact, it is even less passive to identify myself with I am Autistic than it is to identify myself with I am a student or whatever else I can and do identify myself with. Or should I say, it is even more assertive?
It's more assertive because it is an identity that I am stating with an I am in the face of people telling me how I shouldn't, how it's something to be embarrassed of, how it's something that I shouldn't let be a defining characteristic, how it's something that I have and that doesn't have me or however you want to separate me from my neurology today. It's more assertive because there is something to assert against. The more you tell me how I shouldn't let my autism define me, the less it is a matter of letting anything define me and more a matter of asserting my own identity.
I am not letting the fact that I am Autistic define me. I am asserting that I am Autistic, and I am demanding that you recognize one of my major defining characteristics for what it is. That's not passive. That's active. That's not letting. That's insisting.
You tell me I shouldn't let my autism define me.
I tell you that it's not possible to simply let it define me. If I were to be passive enough for it to be a matter of letting, I would be letting you separate me from my own brain.
I tell you that of all my defining characteristics, this is the one people try hardest not to recognize as one, and thus it is the one that I am insisting on. You don't want me to let it define me? You've already succeeded, then, as this is nothing so passive.

Thursday, February 21, 2013

Autism in the Blood? Autism Parenting

Trigger Warning: Early Intervention, Possibilities of Eugenics
Leslie, the same person who wrote "How did I know my daughter was autistic?" and possibly "Wholeness and Completion" (unsure, but the daughter's name is the same and the writing has the same extra commas,) also wrote the final article of the December issue, "Autism in the blood?," discussing blood/genetic testing for autism.
For a blood test, the reasoning seems straightforward enough. If we can diagnose earlier, interventions start earlier. Considering what the current interventions tend to look like, that worries me. If the ways that we changed our educational methods for autistic children were ways that worked better for them, instead of making them more convenient for the teachers, parents, and caretakers, being aware that the kid is autistic sooner would be awesome. So this is a mixed bag for me. In an ideal world, this would be really cool. Just as a matter of curiosity, I'd love to know which blood tests currently can and can't tell that I'm autistic. But with the ways that autism is currently handled, I am not comfortable with giving them any information on my genetics that could help them figure this out. Get me a world where knowing you're autistic ASAP is definitively better, not for "acting normal" as most therapies prize, but for navigating a world not designed for you, and we'll talk. In a world where one of the things I am most grateful for is how long it took people to realize that I'm autistic? Not so much.
I still think that the "oh hey, more genes associated with autism means more evidence that autism is genetic" thing is cool, though. The more evidence we have behind genetics for how autism comes about, the better I can smash people who try to tell me that I'm vaccine-injured or something.
The other big worry I have, which wasn't addressed at all despite the fact that the study about it was mentioned, was the issue with prenatally predicting autism. Australian scientists really did develop a genetic autism test using 237 genetic markers that is 70% accurate for, well, white people. (Bayesian inference and an assumed 1% autism prevalence rate gives an actual 2.5% chance that a fetus that tests positive will be autistic. It takes 99% accuracy to make it a 50-50% chance that the kid who tests positive will actually be autistic given a 1% prevalence rate, for reference.) Since the Australian one was designed as a prenatal test, my worry, of course, is selective abortion. The idea of people aborting because the fetus is likely to have a brain wired like mine is terrifying, and it's not something the author is talking about. I envy her innocence, I think.
She's talking about tests and hoping to diagnose toddlers and getting them "closer in relation to their peers by the time they enter school." I'm reading that and wondering: "closer how?" If we're talking about getting whatever forms of communication we can up so that they have similar overall communication abilities (AAC is success here) then I am all in favor. If we're talking about looking normal, I am decidedly not in favor. I don't think we need to abandon all teaching for autistic kids, but I do think we need to be taking a look at what therapies we're using as a higher priority than getting potentially harmful ones to everyone. Take a look at the correlations between ABA and PTSD before we keep calling it the gold standard and getting everyone to cover it?
Increasing social and language skills is great. Make sure you know the cost of the teaching methods, and make sure it's social skills the way they are actually done, not compliance or the way you wish social skills worked. Compliance opens people up for a lifetime of abuse, the way you wish social skills worked isn't going to make them any more friends than the way they think it should work, maybe fewer. Their natural ones will at least work with other autistic people.

Wednesday, February 20, 2013

Autism Parenting Magazine December News

Trigger Warning: Mass Murder, Ableism
The two articles in the News section of Autism Parenting Magazine are getting covered together. These are a reference to Newtown and coverage of LEGO helping a 10 year old with Aspergers to get the LEGO set that he had spent two years saving up for.
The coverage of Newtown notes that the media has a tendency to sensationalize events. It also mentions that violent crime rates are similar between people with Aspergers and the general population and that most of the violent crimes comitted by Asperger's Autistics are actually property related. It even made mention of the fact that Autistic violence tends to be an immediate lashing out in response to an immediate stimulus, not premeditated attacks. While something premeditated is not mutually exclusive with any neurology, an Autistic one is not the cause.
Unfortunately, there seemed to be some passing of the buck to those with antisocial personality disorders. People with personality disorders do not need the extra stigma of being associated with mass murder any more than Autistic people do, and I hope that people not shift the blame to them, either.
The LEGO story, however, was quite good. The fact that the boy has Aspergers is really only relevant in that his participation in a LEGO playgroup is supposed to be good for his social skills (it probably is! Social interaction that people enjoy can have that effect,) and this is a story of customer service going above and beyond more than anything else. 

Tuesday, February 19, 2013

Speech Complicated

I am usually verbal. I am usually highly articulate. I am more articulate typing than I ever am speaking, but I can still speak very well, usually. I mean I can usually speak well enough to do zero preparation for a debate, then show up, have no sources to cite, but manage to win my debate anyways by explaining why every single source the other person brought actually supported my position. Yes, I did that on the fly, no warning. That huge vocabulary thing is a thing. I have it. Hyperlexia and hypergraphia may be Pathology Words Meant To Make Me Seem More Broken, but they really do apply to me.
Then there are times when speech is highly unnatural, and every word requires thought and is forced. My speech becomes stilted, my grammar gets worse, my sentences become shorter.


I've gotten in trouble on a few occasions for that. It's frustrating, certainly, knowing what meaning I want to say and then having that happen when I try to speak it.

And then there are times when the words just will not come. I am, apparently, unvoiced.
It's not quite that simple, though. There are times when I can sing but not speak. There are times where I can't come up with words and speak them, but I can read aloud. My two languages don't drop at the same time. If it's physical exhaustion or sensory overload, Chinese goes first, English lasts a little longer. English is pretty stilted by the time Chinese is gone, but it's still reachable, sort of.

If I've been triggered emotionally, whichever language that happened in is the one to give out on me first. That usually means English goes. I can argue autism things in Chinese, but no one argues back much. No one comes to try to silence me in Chinese. (Perhaps they are too busy being surprised by the fact that I can actually use the language? That or I have very few readers who read Chinese. Maybe both.) I tend not to read my news in Chinese, at least, not the kind of news that triggers me. So in effect, that means it's English that goes first.

Simple lack of spoons seems to make English give out on me first too, that or there really was a root cause for my current lack of speech that I'm missing. Right now, English isn't happening, not even reading aloud, but I can cover the basics in Chinese just fine. Without needing to type and read it, I could still get food and get directions in Chinese, and I read well enough to cover most of the rest on my own. I scored Advanced Low on a Chinese speaking exam while completely unvoiced in English.

It's not so simple as speaking/not speaking. There are ways and ways of being semi-speaking, and then there are two languages where I can function in those different ways, fairly independently of each other. 

Monday, February 18, 2013

How old is your child?

I got my first curebie spam to my Facebook page. This is, at the least, the start of my reacting. I might have more. We will see.

"How old is your child?"
Did you even read my page before you sent me your things? I have to say, I doubt it. You and your curebie spam, telling me that you can hugely improve a nonverbal boy. I thought that telling you I didn't trust ABA but that if you were talking AAC, I was listening might give you an idea. I thought the fact that I capitalized Autistic and used it as a noun might tell you something. "Yes, That Too is an Autistic blogging about anything. Anything seems to be mostly related to autism/disability. Updated daily at midnight EST." Does this not suggest, perhaps, that I might not want your miracle cure? Does this not suggest, perhaps, that I might think your miracle more likely abusive than not? Miracle curebies, I know what you think of neurodiversity advocates. I am one, hear me roar. Or... hear me laugh at you, really. 
"How old is your child?"
Is that really the question you want to ask? Did you really just compare autism to cancer? Do my eyes deceive me? No, I think you did, and I think you denied it, and I think you're condescending too.
"How old is your child?"
I think you need to read my tagline, and perhaps not assume that being an Autistic is the new synonym for Autism Mom. And I think you need to not try telling me that it is in the diet, this miracle that fixes autism. It's not. It never was a. Diets don't rewire brains. You have no college degree, no qualifications, you said as much, but you say you have the solution, and...
"How old is your child?"
I am 20. I am an adult. I am no child, I have no child. There are no children here for you to make your claim for, and you will not see them when there are. 
Your side of the tracks, as you call it, is not better. It is one where children are taught they are broken and adults silenced if they try to disagree. It is one where I could not function the way I do, and where people burn the,selves out trying to prove themselves not to be who they are.
"How old is your child?"

Oh, and by the way, parents: When I am so insistent that people recognize that Autistic adults exist, this is part of why. That page says, right on the top, that I am an Autistic blogging about things, and (yes, we had an actual conversation in messages here) I still got "How old is your child?"

Sunday, February 17, 2013

How did I know my daughter was autistic?-Autism Parenting

I am now going through the fourth article in the December issue of Autism Parenting Magazine. This one is "How did I know my daughter was autistic?"
It has some problems. First off, it goes with the old "something was wrong" kind of reaction. Autism is a disability, but that "I knew something was wrong" statement reinforces that we are inherently wrong. Knowing that development is atypical doesn't have that effect, but since it lacks the emotional impact that people seem to be going for with autism articles, no one ever says it like that. This is a problem. Among other things, it reinforces the concept that autism is something wrong that needs to be defeated and perhaps that it is scary and bad. That's bad for Autistic adults, and if you have an autistic child, you will someday have an autistic adult.
Secondly, not all autistic people have sensory processing issues. It's an overwhelming majority, but it is not 100%. False claims are false.
This is an issue I take with medicine in general, but a sensory difference does not need to be considered a dysfunction. Being able to spin for hours without getting dizzy, for example, is a sign of sensory processing differences, but it is not itself a dysfunction. I'd say it's an extra function.
In the description of her daughter as a toddler, I noticed several issues as well. Toddlers can and do have tantrums, but a 45 minute extravaganza is more likely to be an overload-induced meltdown. There is a difference, and continuing to call them tantrums as she gets older is a form of infantilization. There is also the assumption that she is throwing herself on the floor "randomly," which is highly unlikely. Just because a neurotypical parent does not understand the reason, that doesn't make it random. Similarly, there is a reason that that she would start hitting herself on the head or head-butting things, even if her mother doesn't know what it is.
Finally, in the conclusion she calls Asperger's a behavioral disability. That's not what it is. It's a different kind of neurology. It's a neurodevelopmental disability, specifically. Strange as it might sound, the behavioral issues that frustrate parents are not the core of autism, and are not the defining factor of what autism is. It's not all about the parents, and that is one example of making it about the parents and caretakers that I can't let slide, not even in a parenting magazine.

Saturday, February 16, 2013

Flash Blogging Alert!

Autistic people are...
Autistic people should...
I would say to type these into Google and look for the autocomplete suggestions, but it's pretty bad. It's triggering, looking at what people search starting with those strings. Âû  gave the heads up about that issue, thanks to them. They're awesome, btw. 
That's where this idea comes from. The idea? Flash blogs, of course. AutismPositivity went well. Autistics Speaking Day (ASDay) got international coverage last year. Having lots of people blogging about things together seems to do things, and maybe it will change what searches come up. We want to do this now, though, so that if we're changing the search strings and the search results by way of putting good things out there, it can hopefully be changed by April.
It needs to be changed by then because it's Autism Awareness month, Autism Acceptance month. Awareness is the term that most organizations use, unless they are trying to co-opt acceptance, the thing we truly need, and something that is incompatible with their brands of awareness.
So I know it's short notice, but Autistic People Should is going to be February 23, and Autistic People Are is March 2. Yes, that's a week from today and two weeks from today. Thumbnail graphics are still to be determined, and you can submit ideas if you want. Anyone who wants to send us a link to their flash blog for either topic, the Autistic People Should blog is here, and the Autistic People Are blog is here. You can put links in the comments, message Yes, That Too on Facebook, tweet at us, whatever. A Google Doc for submission will be up as well, once we get the executive functioning together. And yes, we could still go for another moderator.

How to Get an Official Diagnosis

Trigger warning: brief mention of ABA and similar "therapies"

The third article I'm commenting on is, predictably, the third article of the issue. It's "How to get an official diagnosis."
That's an important topic, and for all this magazine is called Autism Parenting, this article is potentially useful to Autistic adults who are seeking an official diagnosis, either for the confirmation or in order to get needed accommodations.
The article provided a list of resources, including links to directories where a diagnostic service might be found and a link to GRASP. It also mentions the reality that many general practitioners are not aware of autistic spectrum disorders and what an Autistic adult would be like, acknowledging that many doctors are either unwilling or unable to diagnose adults.
There are, however, some problems. Like most parent-focused materials, this piece overemphasizes the importance of ABA and early interventions. While there are therapies that can help, ABA has some serious issues. Remember, the events described in Quiet Hands are fairly standard, and the cost of compliance is unreasonable. (No, I am never going to get tired of linking either of those two pieces. They are important.) I would have thought that adults who think they might be autistic would realize that therapy is not needed to survive, though I suppose that if they can be convinced that they must have "just Aspergers" and their kids are full-blown autistic, then they would once again believe the experts who hold these therapies in such high regard. That wouldn't explain the parents whose kids are diagnosed as having Aspergers, though.
Additionally, many of the online tests for autistic traits linked are problematic. The Autism Quotient, designed by Simon Baron-Cohen, is based on sexist stereotypes and the extreme male brain theory of autism, which is not an accurate theory. It also misses many Autistic people who actually have too much empathy and withdraw due to overload. This is a much more common issue than many people realize. The Aspie Quiz is largely based on the idea that autism comes from Neanderthal genes, also a false assumption, and should also be taken with a grain of salt. The Mind in the Eyes test is not an autism test, but it does not claim to be. It is, however, relevant in that recognition of facial expressions is something many Autistic people have difficulty with.
Finally, the article refers to Temple Grandin as having "overcome" autism, as opposed to having grown, matured, and learned coping skills as people in general are wont to do, along with mentioning Einstein as having the traits specifically of Asperger's. He had a speech delay. If he was autistic, it was classic autism, not Asperger's. Don't try to pretend that all Autistic achievements were made by Aspies. They weren't. (I suspect there is a reason that Chinese people have a proverb about people who are late to speak being smart. My suspicion is that they are talking about hyperlexic classic Autistics.)

Friday, February 15, 2013

No One is Normal

Trigger warning: ableism, murder, something that's kind of like silencing 

No one is normal, no one conforms exactly to what society has, why can't we all get along, why do we all feel the need to change people? On one hand, I want all these things. I want to be able to get along, I want there not to be a need to change people. But I know why these things are there.
It is true that there is no normal that truly exists, that it is just a construct by society. There is no one "normal" person, never was, never will be. So many of us are more comfortable with people like ourselves that we take as normal those with a certain amount of similarity to ourselves, and if we have sufficient power in society, this normal may override the normals of others. Power, privilege, oppression. There is no normal. There are privileged identities and disprivileged ones, and the disprivileged ones come with varying difficulties and varying levels of possibility for either joining the privileged group or for hiding the fact that you are not a member. 
I can not really pass for neurotypical. I certainly don't pass for male. I do pass for binary and cis, though as my identity is androgyne, I am neither of these things. I am able-bodied. Though I am occasionally mistaken otherwise, I am white. I have received a good education, and I am still receiving education. I can read. I can write. I can type. 
Some of these things are considered "normal," and some aren't. Some are things that you would never mention when you describe me, but which you would mention if you were describing someone who didn't have that trait. That is a sign that the trait is considered normal, that it is the privileged trait.
Neurotypicality is privileged over neurodivergence. Able-bodiedness is privileged over physical disability. Maleness is privileged. Binary genders are privileged. Whiteness is privileged. Being able to speak the dominant (privileged) language of an area is privileged. Literacy is privileged. Normalcy often seems to read as "has at least X privileged traits, including a certain set of them." Neurotypicality and able-bodiedness are usually on the must-have list, though passing is sometimes enough and huge achievements a la Stephen Hawking can earn an exception.
When you tell me there is no such thing as normal, this is true, in a sense. The things we as a society prize as normal can not all be found in one person. But there is privilege, and there is power, and some people are closer than others. Remember, when an Autistic person is killed by a caretaker or parent, it is viewed as being about the caretaker snapping and the murderer gets sympathy. When we are killed for the way that we are not normal, few decry this. That's how it's different than just being a little weird.
Don't use the fact that no one is actually quite normal to invalidate the fact that being further from it in certain ways leads to actual institutional oppression. If you do, you are contributing to that oppression, and there is blood on your hands.

Thursday, February 14, 2013

Wholeness and Completion-Autism parenting

My next Autism Parenting Magazine article is the next one from the first issue. (Find the first article's commentary here.) This one is called "Wholeness and Completion," and it is about routines and sameness. It is written by the mother of an autistic girl (Asperger's specifically) who has learned the usefulness of some routines along with how to accept the routines that she has trouble seeing the use of.
This article is very much based on the perspective of one parent raising one autistic child, but she says so, making it clear that she knows it will be different for every autistic person. It will, of course, but it's nice to see a parent mention this while talking about their own kid instead of reminding an Autistic adult who spends a lot of time with other Autistics of this fact in an attempt to silence them. That one happens too much, and parent-focused as this article is, it at least doesn't do that.
She also used identity-first language. Not consistently- she switched back and forth, but she used "autistics" as a plural noun, even. My guess is that this author has done at least some reading of Autistic adult work, since she knows that "autistics" as a noun is not taboo.
One of the routines that she found some use in (eventually) was the one where her daughter always walks to the end of the sidewalk and then stays there. She won't step out into the street until the bus is there, because that's not how the routine works. Giving examples of how routines can be helpful is one of the things I liked about this article.
The were some things that I didn't love, though. I don't think a parent should insist that clothing matches. Insisting on weather-appropriate garb for a young child (I get the impression that her kids are still very young, considering that they are still only in half days) makes sense, but it really doesn't matter if clothing matches perfectly. It's one of those things where teaching kids that they have some autonomy is more important than the impression you are trying to help them give, especially with an autistic kid. I say especially because people spend a lot of time teaching autistic people that they don't have autonomy and that what other people want always matters more.
I also wasn't a fan of calling the obvious uses a "light at the end of the tunnel." Routines are a fact of life for us, and it can't be separated into a tunnel of frustration and a light of usefulness. It's a complete package, and it's more useful than anyone who doesn't need the routine can imagine.
Finally, there was no reason for "In no way, am I suggesting that you stop cutting your child's food" to be a highlighted sentence. Frankly, it's not even a needed sentence in the article. It and the following sentence could be much better written as "If your child is old enough that not cutting their food is an option, it may be worth considering." (Yes, she does immediately suggest not cutting food right after saying that she's not. Consistency is important, and I can be a picky editor for style when I'm not too frustrated with content.)
Overall, I thought this was a pretty good article with a couple of fairly small flaws. I definitely liked it better than the sensory processing disorder one, which pushed therapy and treatment heavily.

Wednesday, February 13, 2013

Words From a Reader (And my reactions)

 Trigger warning: Ableism, slurs
Anonymous from a reader, with permission. If it's in the block quotes, it's from them. If not, it's from me.
I am tired of my family framing my Autism as the reasons for why "I'm a freak" or "I'm crazy" or "I don't know how to show love [in the narrow ways they keep hoping for]". 
This is what happens to us. Because the way we show, well, everything, is different, they say we have no emotions, or we don't know how to show love. If we were dominant, I suppose we could say the same of you, since the way you show love is not the way we do. But you're not, and we can't, and so the difference is just an impairment. 
What about the beautiful parts of Autism, like my extreme passion for languages, linguistics, acupuncture, and music? What about my synesthesia, my audiation ("mental iPod")? What about the fact I remember phone numbers and addresses off-hand, with little to no effort? What about the fact that I derive extreme pleasure from the littlest things like the soft touch of a blanket or being awoken by my dog's fur against my face?
Or silky bindings on blankets, or when light and shadow is just so? Remember the obsessive joy of autism, and remember it well. Remember that there were things to say, things to write, for AutismPositivity and for Autistic Pride Day.
And what about the fact that I can and do love, hard and deep? Just because I don't show it in the traditional present-giving phone-calling ways doesn't mean I don't feel it. Is there no tolerance for the diverse ways in which human beings express themselves, experience, and feel? 
 There should be. There really should. But autism is pathologized well beyond that which is actually impairment. Ableism is to blame for a lot of the problems we face, more so than our actual impairments. This is just one more example. Because no matter how much we claim to want diversity, we keep proving that it scares us. Once more, it's scaring people, and once more, the fear is hurting those of us who are different.
Autism is Beautiful and I am proud to call myself Autistic.
Never stop, then. I will join you.
I'm proud to call myself Queer too. Is there no beauty in the fact that I love, regardless of biological sex, gender identity, or expression?
There is. People have a tendency not to see it, but there is.
Like many Autistics, I have PTSD but it is all a part of who I am. If it weren't for the experiences that gave me PTSD, I wouldn't have found my career path or realized that aspirations are meant to be realized. I wouldn't have the deep appreciation for things that many people take for granted--such as the right to my own body (physical, mental and emotional), and the right for every human being to be treated with respect simply for living. Yes, there are times when my Autism can be distressing, and I'll be honest--PTSD can be very distressing. But I wouldn't give up the distressing parts if it meant I also had to give up the beauty, appreciation, and RADICAL LOVE I feel every day, thanks to my life experiences.

Tuesday, February 12, 2013

More Upset, More Targeted, Both?

Trigger warning: r-slur (censored), bullying

ThAutcast does seem to give me a decent bit of post fodder, which is cool. ThAutcast also links to me on occasion, so I guess we kind of interact. This time, the status that got me thinking is about bullying.
Why might someone on the spectrum be more upset by bullying then a non autistic peer?
There are many, many reasons that an Autistic victim of bullying could be or appear more upset by any given bullying incident. It's not exactly news that our body language can be hard for neurotypicals to read, and we could appear more or less upset than we really are. We could be already overloaded by the time the bullying happens, and so it could be the final straw for a major meltdown. It could be that we don't understand why we were targeted.
Or... maybe we seem more upset because we're reacting to more bullying and less support.
Maybe we're the favorite target, and that means we have more incidents of bullying to deal with. Maybe it's more often. Maybe it's more severe. Maybe the bullies are getting bolder and bolder as our teachers turn a blind eye. Maybe we're taking the bullies at their word when our neurotypical peers can detect what is exaggeration and what needs to be taken seriously. I know that all happened to me. 
I know that when I was in third grade, I was called a r***** on a weekly basis at least, sometimes more. I know that I was chased around the playground by people who insisted that they were going to take me captive and blow me up with a bomb. I believed them. But the teachers thought it was a game, and nothing was done. My terror was thought to be faked, I suppose? Or maybe they couldn't read my body language. There was a slanted ceiling in the classroom where I had language arts. I hit my head on it every day. (I might be dyspraxic on top of Autistic. Just saying.) My classmates made fun of me for it. My teachers made fun of me for it. They could have changed my seat to one of the ones where I couldn't hit my head. They didn't. 
Some of my friends have heard the story of the worst day with that. I... I lied a bit on it. The final book didn't fall off the bookshelf from my knocking the bookshelf. After watching me bump and crash into things and hit my head on the ceiling every day, there was one day when I crashed into more things than usual. Head to the ceiling, then elbow to the table as I knelt to get my books, back and head to the bottom of my chair, back to the bookshelf, elbow to the bookshelf. And then my teacher hit me (gently, but still) over the head with a book, while I was still on the ground, wincing from all the others. Yes, I hit my head on the ceiling again when I stood up a second time. He laughed. When I got back to the main class, I told my main teacher. She laughed too, just as she had all the times my own clumsiness had been the final cause. (Yes, this was a different classroom that about ten of us were in, which was about a third of the grade.)
I've since been told that it was an "advanced" class that I was in, but I don't know that my classmates knew that the people getting pulled out were supposed to be more advanced. They might have? It didn't stop them calling me r*****, either way. The fact that I got 100% on all my spelling tests for the first almost half the year didn't stop them either. The time that I was math challenge champion by default, when I was the only one who got it right? That didn't stop them either.
Nor did my teachers stop them.
Even when they started stepping on my feet, my teachers didn't do anything. Nothing. When I stepped on their feet back, finally, on the last day of school, I was the one who was spoken too. Not them, me. 
Or they imitated my jumping and flapping as they called me r*****, or they imitated the way that my hiccups made me jump, insisting all the while that it was on purpose. It wasn't. My hiccups still make me jump, and I've got about twice the mass now that I did then. 
Maybe we actually do get more upset, I could believe it. But maybe, just maybe, we're taking more bullying and having more people as sources of bullying (remember, the teachers are doing it too and turning a blind eye to the students!) If there is more bullying to react to, there can be more upset without it being more per amount of bullying. 

Monday, February 11, 2013

Sensory Processing Disorder-Autism Parenting

Autism Parenting Magazine is now a thing- it's available on the iPad (yay, I got one of those for graduation.) Of course, it is heavily from the perspective of parents, since it is a parenting magazine. As such, I'm not going to fault it for the fact that the articles are all directed at parents. I will, however, be reading every article from at least the first two issues that I can get for free and possibly continuing past that point. At $2.99/month, I think I can find out what it is that parents are being told they should do and explain why it's wrong. (Yes, Autism Parenting Magazine, you're going to be wrong about many things. Just looking at your cover tells me that.) Every article is getting, shall we say, corrected.
I begin with the first article. It starts on page four of the December 2012 issue, the first ever, and its title is "Sensory Processing Disorder."
The first thing they did wrong is make an article in Autism Parenting claim to be just about Asperger's when it is really about the whole Autistic spectrum and some people who aren't even on the spectrum. Something like 80% of Autistic people have sensory processing disorder (SPD), and that holds across all of the subsets.
The initial description of SPD is reasonable, though the anxiety, depression, and school failure described as being possible results "if the disorder is not treated effectively" are quite easily results of many of the therapies used to "treat" SPD as well as possible problems that people with SPD can face. Be very wary of most treatments, as the most effective thing to do is generally to try to avoid sensory triggers. Occupational therapy can be helpful in some cases, but finding ways to avoid triggers (some of which were listed, and those methods are good) is often the better choice. Additionally, while hypersensitivity and hyposensitivity are, in fact, common issues, many sensory processing differences are not as simple as hyper and hyposensitivity. There is also sensory seeking and sensory avoidance, which may or may not match up along the hyper and hyposensitivity lines that you might expect. A person can, in fact, be sensory seeking for something they are hypersensitive to because the sensation is just that good. It can also be more complicated than simple hypersensitivity and hyposensitivity for senses as a whole by way of being more or less sensitive to single sensations, such as my hypersensitivity to mint and hyposensitivity to spices. Both are oral sensations, so calling me simply orally hypersensitive or orally hyposensitive would be incomplete.
As a first introduction to sensory processing disorder, this article is fairly good, though it should make it more clear that this is an autism issue in general as opposed to being just an Asperger's issue and put more emphasis on finding ways to avoid triggers rather than occupational therapy, which often involves forcing triggers onto people while they melt down until it doesn't make them melt down anymore, as in the case of brushing. Some people with sensory processing disorder may, in fact, like brushing, but if it is painful, it is painful and is not acceptable to do to a child.
And finally, here are a few tricks for SPD that I think are important but were not mentioned in the article:
  • Mint is actually a pretty common issue. It's a strong sensation, and people either love it or hate it, and a lot of people with SPD fall into the "hate it" camp. Toothpastes that are not mint flavored may be harder to find, but if mint is an issue, this is more than worth the time. Flosses that are not minty may also be a good idea.
  • Sometimes knowing that a sensation that triggers sensory issues is coming ahead of time can help. If so, having "gets advanced notice of fire drills" or "is seated facing the clock" as accommodations can help.
  • Try all different kinds of toothbrushes. Electric ones are actually worse than manual ones for me, something about the vibration.
  • Bring snacks with you, so you can still eat even if all the food you are provided with contains sensory badness.
  • Carbonated beverages can be painful. If they are for you or for your kid, bring water or something else you can drink. You have no idea how many times I have gone to social events only to find that every beverage they offer is carbonated, and I can't drink them. Even shaking and stirring to try to make them go "flat" isn't enough.
  • If hairbrushing is an issue, get a haircut. Comfort is more important than looks, and anyone who tells you different is to be laughed out the door.
  • Certain fabrics can be problems. Which ones will vary from person to person, but don't try to make someone wear a fabric that is a sensory issue. Finding different clothes is worth it.
  • Strobe lights can be extremely disorienting, even for those of us who are not officially considered photosensitive. It's not the same level of big deal for us as for a person with photosensitive epilepsy unless we actually have photosensitive epilepsy, but it's still good to avoid. Turn flash off if this is an issue.
  • Unscented soaps and deodorants are your friend.
  • Tight clothing may be a problem. If so, do not force your kid to wear stockings, leggings, or other tight clothing. Comfort is a prerequisite to being able to function, and it's still more important than looks.
  • Footwear can also be interesting. Many people do best with crocs, some with sandals, some barefoot. Try different things if shoes are a problem.
  • Along the lines of footwear, some people just can't wear socks. If this is you or your kid, choose shoes accordingly so that you don't get blisters.
  • Short of legal regulations such as requiring shirt and shoes to be served and the issue of indecent exposure, all dress codes can be modified for disability. It's no different from the person who has a doctors note saying that they have to wear sneakers instead of dress shoes.
  • Carry a stim toy, always. By stim toy I mean something you can use to get a sensation for which you are sensory seeking. Maybe carry multiple. Certainly have one that can be used discretely.
  • Puberty doesn't make SPD go away. Whatever the requirements for clothing may have been, expect it to continue, and expect either the same requirements or stricter ones to apply to any new undergarments.

Sunday, February 10, 2013

Ableism is to blame

Trigger warning: murder, lots and lots of ableism.

I saw a girl post an apology for the fact that she has autism, that she will never be what her parents want her to be. I responded to her with the usual message of it's ok, it really is, autism isn't the end of the world. That was for her. This is for me.
This is why things like the AutismPositivity flash blogs are needed, this is why things like Loud Hands are needed,  this is why Autreat and Don't Mourn For Us and Autism Acceptance Month are needed. A teenager was diagnosed as autistic at age thirteen. Her parents didn't tell her for two years. And when she found out? The picture she had of autism made her not want to accept her own neurology. She believed that autistic people were straight up freaks, and that as she was not a freak, she could not really be autistic. When she came to terms with the fact that she really is, in fact, autistic, her reaction was to try to make herself normal. She tried to beat her own brain, to make herself be like the rest of her family, and she couldn't do it. Of course she couldn't, and people were wrong to ever send the messages that led her to try. A brain that is wired differently leads to being different. It's not that complicated, but people are obsessed with normalization. Whatever lip service we may pay to diversity, we do not really want it, and it hurts to look at that fact. It hurts even more when you are outside the range of acceptable diversity, as I am, as she is, as every Autistic person and person with autism is. 
And it has devastating effects, far worse than the actual impairments of autism. No impairment is the reason that we are called freaks. No impairment is the reason that we are bullied (no, flapping our hands is not an impairment, nor is it anything more than a convenient excuse, a difference that does not impair anything.) No impairment is the reason we are told that we have no human dignity. No impairment is the reason doctors still tell us to consider alternatives after establishing that the only alternative is death. No impairment is the reason that she was ostracized from her own family. Their reactions to it, society's reactions to our impairments and our simple differences, are the reasons for these things. Ableism is to blame. Ableism is to blame for the high rates of depression that we face, likely for her specific depression. Ableism is to blame for our high rates of PTSD. Ableism is to blame for people considering it acceptable to murder us, and to give the sympathy to our murderers, not to us. Ableism is to blame for the fact that when the same people used the same techniques to try to cure autism and queerness, these methods (slightly modified, but the cited study is often that old one with electric shocks) are still seen as the gold standard of our education while their monstrosity has been (mostly) recognized in their use against Queer people. Ableism is to blame for so much, including the numbers of us who think these things are not the fault of systematic oppression but rather a reasonable result of our disability.
Autism has no cure.
To me, this is a relief, because I know what would happen if there were one. To others, this is a horrifying thought, the realization that they will be like this until they die. I understand that the are people who, even in the absence of ableism, might still wish not to be autistic (Just for themselves, no, this does not mean you can decide this for anyone else ever.) I can even fathom some of the reasoning they might have. But the vast majority? Ableism is to blame for the ones who want to be cured because their family rejects them, because society rejects them, because they are seen as freaks, because they have been told that autism will prevent them from reaching their goals even when their goals and their actual impairments have no relation. When I see people blame these things on autism, I want to scream, and when autistic people accept these notions, I want to weep.

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Saturday, February 9, 2013

More Than Two Options

Trigger Warning: Passing mentions of ABA and similar therapies

I keep seeing people (mostly people who support therapies that base themselves heavily on compliance, like ABA) arguing that not doing these therapies means leaving Autistic people untaught and providing them with no help. I don't know how it happened, but I keep seeing people assume that there is a binary choice. We can:
  1. Provide intensive therapies to teach an Autistic person "skills" that are really more like "acting neurotypical" 
  2. Do nothing.
The idea that there are only two choices is reflected in comments people make about how compliance based therapies are necessary . No, they aren't. Teaching is important, education is important, learning is important. Compliance-based therapies are not, and are often in direct opposition to what we really need to learn. People tend to compliance type therapies are needed and important because either compliance is convenient or because they do not realize that compliance in the sense it is used in most autism therapies is not a prerequisite for teaching or learning and can inhibit education! Yes, really. Some people consider education to be learning how to learn and think, and that is not something that can be taught through compliance. Only compliance and rote can be taught that way, and the cost of compliance is unreasonable.

What people are missing is a third choice, the choice of providing supports (some of which might be therapy-related) to autistic people in order to help us navigate the world as autistic people and to set the boundaries we need to set. Before you ask, yes, there is a difference between this and most therapies, which tend to ask autistic people to act like their non-autistic age peers or to repeat the same tasks over and over. Acting not-autistic is usually either impossible or requires so much work that little else can be done, the repetition leads to boredom, frustration, and eventually acting out from frustration. Remember, every behavior is the act of an autonomous being who has reasons for acting as they do, and understanding why violent outbursts happen is going to be much more useful than simply punishing them. For everyone involved.

When someone gives you a binary choice between ABA or similar therapies and doing nothing, call them on it. Either they are willfully misleading you or they have been misled. When someone tells you that no therapy is dooming a child to a life of suffering, call them on it. Either they are willfully misleading you or they have been misled. When someone tells you that compliance based therapy is the only way to teach a disabled person, call them on it. Either they are willfully misleading you or they have been misled. There is an option C. 

Friday, February 8, 2013

Autistic Emily?

I read Questionable Content, and today I want to talk about a character from there who I think might be autistic. Unless the Questionable Content universe is a lot better about autistic people than we are today, I doubt that she knows she's autistic, but I think she is.
No, this isn't about "being a jerk," like so many people use to armchair-diagnose people. She is socially clueless at times, but she is nice. See "socially inept and mean are two different things."
I'm pretty sure she's sensory seeking. She beat out dozens of other applicants for an apparently competitive library internship so she could sniff old books, and admitted as much pretty openly (2207.) She has also played with both Martin's (2320) and Claire's hair (2360.)
She also has some echolalic tendencies, repeating the word "muskrat" over and over on one occasion (2302) and repeating "fluffy" during her sensory seeking with Claire's hair (2360.) She has also repeated Tai verbatim (2317*.) One of the earlier clues, though, was that the highlight of her first day was the banana smoothie, and she said so using just the noun, "Banana smoothie" (2213.) She does the same when she is excited about the banana smoothie being brought to her (2282,) and the illustration suggests that she was clapping in anticipation.
Also in the area of language, she seems to take things literally and have some possible difficulty telling when people are joking (2253.) Her sense of humor also seems to include a very active imagination (2361) and puns based on literal interpretations, such as "arms races" (2368.)
There are other comics she appears in where her behavior may or may not fall under the umbrella of stimming, and it would take the ability to ask her questions directly to be sure about this. These include her poking Momo's belly button to cause her hair to change color (2250.)
Beyond simple stimming, there is some Autistic body language, such as continuing to use clapping to mean happiness into adulthood, outside the context of applause (2282, 2288,2295, 2329) and what might be lifting her arms to flap as she begins to laugh (2368.)
Finally, while many autistic people can and do lie, Emily does have the specific kind of honesty I have noticed to be very common in autistic people- correcting people on their "white lies" (2242) and admitting to reasoning behind decisions that most neurotypicals consider best left unmentioned (2207.)
And I won't deny it- she can be clueless and weird, and she apparently does have social troubles outside the rather accepting bunch forming Questionable Content's main circle (2298.) In the first strip where we meet her, on her first day of work, she asks for permission to goof off with the boss (2203.) She was also very excited to have a banana smoothie that was just a banana smashed with a hammer (2210) and seems to make a habit of having this sort of smoothie (2241, 2273,2282). She also suggested using a fellow library employee (robot) as a battering ram (2237) and asks her some... interesting questions (2238, 2250,2251, 2283, 2284, 2315*.) Her first instinct upon meeting Pintsize was to punch him, denting his head and injuring her hand (2340.) She is also either deadpan enough with her sarcasm to fool her coworkers or unaware of just how weird she is (2371.)
However, I also hold that if people view autism in the Questionable Content universe the same way it is viewed here, or even in a similar way, Emily most likely does now know that she is, in fact, Autistic. While she is aware of having some social difficulty and of her lack of friends from outside her work (2298,) she seems more than willing to be her own strange self around these friends she has made. I see no evidence of her making any effort to hide any of her more Autistic tendencies, nor do I see her apologizing for these tendencies. At the very least, that means that if she ever did receive the sorts of therapies that are typical for autistic children today. The type of Autistic person who is as open as she is and as confident as she seems to act is usually open about the fact that they are, in fact, Autistic, so it seems most likely that she doesn't know her neurological status. If she does, either the politics around autism is completely different from the way it is here or we would probably know it by now. Therefore, I propose that Emily from Questionable Content is autistic but is not currently aware of this fact.

*Guest comic, may or may not be considered canon.

Tuesday, February 5, 2013

Autistic and Pregnant

Trigger Warning: Ableism, talk of forced abortions and loss of autonomy

I saw this: 
I’ve never seen a shirt saying Autistic & Pregnant or something along those lines.  Probably because it wouldn’t be safe to wear.

It hurts. It hurts that it's not safe to wear a shirt like that. It hurts remembering the signs at pro-choice rallies, saying that "an autistic woman shouldn't be forced to give birth" as if autism has anything to do with the fact that no one should be forced to be pregnant and ignoring the fact that an autistic woman shouldn't be forced to abort, either. 
It hurts to know that people legitimately think that Autistic people either can't or shouldn't have kids. Can't would be the assumption that Autistic people wouldn't be able to have a relationship or have sex or get pregnant, which isn't how it works. We can. We do. Why do you think we still exist? People like us can grow up and have kids. It's not just Broad Autism Phenotypers who have Autistic kids. It's Autistic adults who have Autistic kids too. 
The idea that disabled people can and do have kids, some of whom will also be disabled and some of whom will not is one that people have a lot of trouble with, but it's a fact of life. I want kids. Not now, I'm still in school, but I do want them. And I want to live in a world where I'm not at risk of having my kids taken away from me because I think that the cost of compliance-based therapy and treatment is too high, because I think that there is a huge difference between eliminating autistic behaviors and supporting an Autistic person, because I think that Autistic people are people who have our own wants and needs and goals and can make our own decisions about what is and is not in our best interests. I want to live in a world where a shirt saying Autistic & Pregnant would be safe to wear, where no one would attempt to force an abortion on anyone wearing it, where no one would think the "risk" of the child being Autistic too scary to accept, where being Autistic & Pregnant & Totally Cool With This is acceptable.
That's where I want to be, and that's the world I am trying to work towards. Maybe I'll make the shirt myself when the time comes. 

Monday, February 4, 2013

On Forced Treatment

Trigger warning: forced treatment, forced institutionalization, ableism

The New York Times has invited people to write in about forced treatment for mental illnesses, and, well, here's what I sent them. (They have had their conversation by now, it was Sunday.)

When I hear about forced treatments for mental illnesses, I think of many things. I think of the reasons that institutions are bad, I think of the problems are mental health system already has with coercion. I think of the fact that a mentally healthy person is (usually) encouraged to be assertive and to make their own decisions, set their own goals, while a person being treated for a mental health issue (or in therapy for a developmental disability like autism) is not. Instead, compliance is key, and disagreeing with the goals that the professionals set is seen as a sign of illness, not of the decision-making capacity and assertiveness that we claim to encourage for people who do not have mental health issues. In fact, this pushing of compliance above all is priming people to  need to return to the system time and again or to simply never leave. 
I also think of friends who have received forced treatment of any sort. Some of them have PTSD from the experience, and it did not cure the issues they were being forcibly treated for. Rather than helping them, it created more issues. 
Complete reform of our mental health system is needed, and forced treatment is not the reform that we need. It is, in fact, already much to easy to make forced treatments happen if you know how to work the system, and it isn't fixing things. Instead, it is making people try to hide their problems and avoid getting the help that they may well be aware of needing due to the loss of autonomy that comes with the current system.
In many cases, the choices are few.

  1. Try to act like nothing is wrong and like you do not need help.
  1. Get treatment that will likely be expensive and which may include the loss of significant control over your life, possibly including medications that have significant side effects, with refusal to take them due to these side effects being taken as an indication of your impairment and possibly being forced to take them because you made the informed choice not to take them.
Yes, sometimes people manage to get the help they want without driving themselves into debt or losing control over their own lives at the hands of those who think that a mentally ill person can not act in their own best interests. This is even reasonably common, but the risks are sufficient that a completely rational person  could choose to avoid treatment because of these issues, even before contemplating the stigma around mental illness. The way to fix this isn't to force people into the current system, but to make a system that will actually help people. 
Think about it. If you knew you faced a real risk of losing the right to make your own decisions about your life, would you take that risk in order to get help?