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

Sunday, March 31, 2013

Autism Acceptance Is...

Autism Acceptance is saying that autism is not inherently bad or inherently good. It's saying that to make such a statement is just as nonsensical as classifying neurotypicality as inherently good or bad. It's accepting Autistic people and autistic people and people with autism as people who are wired differently, and that's fine. A cat is not a defective dog. A linux computer is not a defective Windows machine. An Autistic person is not a defective neurotypical.
Autism Acceptance is saying that Autistic people are not just like neurotypical people, that we never will be, and that's OK.
Autism Acceptance does line up well with what many neurodiversity advocates aim for- we are wired differently, and we support the strengths people have and we find ways to accommodate for the weaknesses, both those which are considered disabilities and those which are simply considered differences.
Autism Acceptance means supporting the Autistic person in learning the things they want to learn and in gaining the skills they need for what they want to do.
Autism Acceptance is the radical assertion that at the level of broad, overarching principles, what Autistic people need isn't that different. We need to be accepted for who we are. We need to hear that we're OK, we need to hear that the things we have trouble with don't make us broken or lazy or horrible people. We need people's actions towards us to reflect that. We need people to listen when we say we need help, and we need people to listen when we say we don't. We need to be taken as the whole people that we are, and we need to be met with the understanding that we are the experts in our own lives and abilities.
Would you want to go without those things? No, I didn't think so.
Regardless of neurology, people need those things.
Autism Acceptance is just reminding us that Autistic people are people, and that as such, we need those things too.

Saturday, March 30, 2013

They... Responded?!

Yes, you heard me. Autism Speaks actually made a semi-response to the "Autism Speaks, I Want To Say" flash blog. Maybe they remembered the fuss we made after they erased Autistic activists from the whole "Autistic People Should" flash blog leading to Google changing the autocomplete search terms and then some of us going after Autism Speaks' erasure in the following "Autistic People Are." Maybe. Maybe they noticed that the same person organized all three events. I'd love to think I'm a sufficient threat to them that they keep an eye on me.
But note that I say semi-response. It's very clearly a PR response, you can read it here. Reading it, I could swear I was back in high school listening to my principal talking about how valued student perspectives are but not saying a word about what the perspectives were, not telling us where to find the perspectives, not addressing anything students actually said. It reeks of "isn't that cute!" as opposed to being the response of someone who sees us as equals.
I mean, it's progress. Ignore, then laugh, then fight, then win, right? Well, they're not exactly laughing at us, but they are speaking from the position of thinking that they don't really have to listen, they just have to say nice words about listening. They're wrong, but one of the mistakes you get hit hardest for is underestimating your opponents and I plan to hit them fast and hard until they learn that despite the financial imbalance, Autistic people are speaking and it is time (long past time, really) for them to listen instead of ignoring and fake-listening. Not good enough, Autism Speaks. Talk to us like equals. Respond to our actual statements. I know how power balances work, and I know we have more power than you want us to have. I know we have more than you think we have, too, and that we are better at using what we have efficiently. You might have a financial edge of orders of magnitude, but we have people who know what we are arguing for- our lives, our rights, our safety. Something worth fighting for. And we are stronger for it. Autism doesn't speak unless autistic people are speaking, and we are, and it is time for you to listen properly.
Don't just tell us that our perspectives are important, show us. Do it by responding to what we have to say, not just to the fact that we are saying things and that this is (not really) important to you. I went to a public high school, I know how administrators who want students to think they care talk. And I'm on a neurodiversity committee at college. I know how administrators who actually care talk. You fall squarely into the responding for PR but not actually caring what we say category, and don't ever believe that you have me fooled.

Friday, March 29, 2013

Autism Speaks, I Want To Say

Before I even watched the documentary, reading your description on your site gave me a pretty good idea about what I want to say.
From it:
Autism Speaks, I want to say that for something "about" AAC, the described focus is all wrong. It shouldn't be about the parent's emotional struggle to communicate because it's about the kids. It shouldn't be highlighting the increased diagnosis because that's not the point of AAC at all. The hope and promise of AAC is potentially good, though knowing your organization, I wasn't convinced the hope and promise that you described would be the one of "how this actually helps AAC users."
Watching it, in the first minute I had to pause, cringe, wait to calm down. There was SO MUCH touching of the kid, and there was no way to get his permission because he didn't have his AAC out to answer or anything. Yes, I know that she's probably his mom, but... I'm Autistic. I have touch sensitivities. That kind of constant light touch drives me nuts. Then they got him set up. (He's using what looks like FC?! Was not expecting Autism Speaks to use that, I'm... actually kind of impressed by that, but, like, why "I am excited"? That's not actually telling us what he wants to say, which is the title of this...
And then they call autism a nightmare. NO NO NO NO NO.
Autism Speaks, I want to say that you need to stop using that kind of rhetoric because it is actively hurting the population you aim to serve. I don't care why you think calling autism a nightmare is OK, I don't care what context you think you have to justify it, you need to stop doing that, and NOW.
Autism Speaks, I want to point out the irony in having your autism expert say on camera that other's ignorance is responsible for some of our suffering when it is your brand of awareness that causes it. Yes, you. I have dealt with the ignorance of "never heard of autism before" and I have dealt with the ignorance of "educated on autism by Autism Speaks." The latter is far worse. Autism Speaks, I want to say that you are part of the problem by your own description.
I don't know if the things that we see on the screen next were things that the featured AAC users actually typed, but if it was not by them, another person with autism, or an autistic person, then it should not have featured. It's dishonest to mix things AAC users actually typed with things that we only imagine them to have typed, so it needs to be clear which is which. (I could see those things having been typed by a person bearing the education of Autism Speaks on what it is to be autistic, what it is to be non-speaking, so I could believe that this paragraph is moot. But I could also see it not being moot, since we know that Autism Speaks has written in first person about things that they are not in the past.)
And then we cut to kids doing things that I have done, some of which I still do. I suppose it is supposed to be illustrating how different and tragic we are? I don't know, they just look like kids to me. Autism Speaks, I want to know what the purpose of that was, because different and bad are not the same and either that scene was pointless or you're using the merely weird as evidence of bad.
Almost 3 minutes in, we see an AAC user typing a thing that has substance. "I am ready to change the way people view us." So am I, so am I. Autism Speaks isn't going to do that in the way I'm guessing and hoping you would like to see, always viewing you as a cut below normal, but goodness do I want the way people view us to change. It's part of why I'm here.
Now we get to the part that highlights the increasing diagnosis.
Autism Speaks, I want to say that you really need to quit it with comparing autism to AIDS, diabetes, or cancer. Not that those are particularly great to compare to each other, even, but they all have "has the ability to be fatal on its own" in common, at least if left untreated. Autism can't do that. Autism Speaks, I want to say that you need to stop comparing autism to death, stop calling autism a nightmare, stop making it about the parents, stop focusing your conversation, well, anywhere except the autistic people and what will help us most. (Hint: Actually giving nonspeaking people iPads and other AAC devices and paying for them to be taught to use them is a better use of your money than pretty much anything else you do, including making this video.)
"He's really sweet for being an autistic child."
Autism Speaks, I want to say that if you have provided the education that leads people to think that is a compliment, rather than the statement that autistic children, autistic people, can't be sweet, then you are Doing It Wrong. And yes, I feel safe saying that you're the group that provided the "education" leading there. Acceptance does not mean thinking we are sweet... for autistic people. It means understanding that we have the full range of sweetness and meanness and happiness and sadness and anger and frustration that all people have, realizing that anything ending with "for an autistic person" is stereotyping us and going to be wrong, going to be bad.
Autism Speaks, I want to say that leading parents to believe that they know for sure that curing their childs autism would lead to them having a happier life is not autism acceptance. I want to say that it is, in fact, the opposite of acceptance, and it isn't even true. Being autistic doesn't prevent happiness. It is a failure of this "theory of mind" so many claim we lack to assume that we must view our lives as you view them. Remember that we have never lived another way, remember that autistic people have this tendency to not like change, remember that our life of experience will still be of things that line up with autistic, remember that there is no way to make everything as if we never were and that a neurotypical mind with autistic memories is not a combination that is going to work well. It is one that will lead to all kinds of confusion, all kinds of pain. Happier? I doubt it. More normal seeming? I'm sure of it. And I think that conflating normal with happy is one of your main rhetorical issues. Maybe it always has been, that and conflating different with bad and the specific difference of autism with death and despair and nightmares of your own creation.
And Autism Speaks, I want to say that speech and communication are not the same thing. In a piece about AAC, you should know better than to have the two conflated. It's not the same. Some autistic people will develop speech "on time," others later, others never, some speak and then stop, and keeping speech linked to what we want to communicate takes a lot of work for many of us. Keeping our AAC linked to what we want to say is often easier, even for those of us who do speak. Typing is more reliable communication than oral speech for many of us.
Autism Speaks, I want to say that the purpose of AAC is communication. It is not, was not, should not be to make us more normal, but to let us express ourselves as we are.
Autism Speaks, I want to say that conflating whatever it is that means a kid is in constant pain with the fact that he is autistic? That's not responsible. Like, at all. Because, yeah, sensory issues are a thing, but "failing to accommodate sensory issues" isn't autism, assorted chronic pain conditions aren't autism, autism on its own doesn't do that.
Autism Speaks, I want to say that "swallowed by his autism" isn't an OK way to describe anyone. Ever.
Autism Speaks, I want to say that not being able to communicate in ways that others understand does not imply a disconnect with the world as a whole, just with the people who can't understand. There is a lot of world besides just other people. And there are a lot of things that can be communicated through behavior, even negative behavior, if only you know how to listen. "Autism Speaks, it's time to listen." Sound familiar? Well, Autism Speaks, it's time to listen to the behaviors in front of you, because behavior is communication and part of meeting us halfway is understanding that, even if it takes longer to figure out exactly what it is communicating.
Autism Speaks, I want to say that oral speech and communication are not to be conflated. Even in a video about AAC, you are making that conflation. It needs to stop.
Autism Speaks, I want to say that realizing that every autistic person whose hands you got communication into could, in fact, communicate, was, in fact, competent and thinking, should be a step. It should be a step towards presuming competence for all autistic people, for getting communication into the hands of all autistic people. If you are truly out for our best interests (I know you aren't but hey, let's offer up what you would do if you are,) the thing to do is to make sure that every autistic person has access to AAC, that AAC meetings are one of the first things done. Maybe the first. Because an autistic person who communicates in ways that others understand can and should take an active part in deciding what to work on and how. An autistic person who types can speak for themself.
Autism Speaks, I want to say that "these children are normal!" is not the proper follow up to the glimpse of understanding that they are competent. They are wired differently in fundamental ways, they experience the world differently in fundamental ways, just as I do. They are not your illusion of normal, and they never will be, and that's fine. They don't need to be. They are human, and they are autistic, and they are completely distinguishable from their peers, and all of these are fine and good and none of them contradict each other and normal is an illusion that no autistic person should be forced to emulate.
Autism Speaks, I want to say that normal isn't the point. Normal was never the point. AAC is for communication, not for normal. If it were for normal, I would have let people thought I was "just quiet." No, I am a part time AAC user, and my friends have, by and large, seen me use it. I've gone out and socialized beyond what I needed to do, using AAC, because I wanted to spend time with friends. If normal were the point, I would have gone home. None of them had realized speech had gone kaput on me until I pulled out the iPad. But communication is the point, along with everything communication can lead to. Socialization, writing things that move others, telling others about your decisions and, if so chosen, why you made the decision you made. Wants, needs, hopes, dreams. AAC lets us tell of those. It's not about normal, it's about showing the unique and completely distinguishable selves that we are.
"I want to say I think technology has changed my life. I can communicate with the world, and I have choices in my life." Yes. She gets it. Most of this video suggests to me that you don't get it, Autism Speaks, but she gets it. She knows what this is for, she knows how this makes her life better, and those words are the sign of a self-advocate blooming. (Yes, self-advocate. Right now, she is advocating for herself, though if she does as she says she plans, the activist is coming.)
That's not to say there was nothing good here. They showed a range of people. They showed boys and girls, they showed people of color. They showed what looks like reading off what they had typed, which is related to how AAC helps people develop oral speech. (Yeah, AAC use makes nonspeaking autistic people more likely to develop oral speech and to do so faster. Also, for part-time users like me, I find that "reading things I have already typed" lasts longer than "just speaking" when speech is going kaput.) They showed Kayla, the same one who typed about technology changing her life, being at what seems to be college. Yes, college.
But those good things don't make the video as a whole good.
Autism Speaks, I want to say that your metaphors and rhetoric for autism are just as damaging as ever, just more manipulative and better hidden. I'm not sure that's actually better.
Autism Speaks, I want to say that your videos about us aren't even really about us, but about our parents and teachers speaking about AAC as if it is some sort of magic.
Autism Speaks, I want to say that making it about others views of what we do is part of what's wrong with this.
Autism Speaks, I want to say that you need to do better, and I want to say that doing so will require fundamental changes, not just surface paint.
And Autism Speaks, I want to say that I will keep saying these things, and that I and my Autistic brethren will keep typing and speaking.
Autism Speaks, it's time for YOU to listen, and to hear, and to answer. For real.

Wednesday, March 27, 2013

On Failing Kindergarten

Trigger Warning: Quiet Hands

In my token Autistic speech (yes, I would replace my approved presentation with that at the last second if I thought I was being used as a token, BE WARNED,) one of the things I mentioned was that I would fail special needs kindergarten. (I was mainstreamed and there wasn't an issue.)
You see the posters of "proper listening" in your child's classroom? I can't do it. I would, legitimately, fail your child's kindergarten special ed class, today. I am not even joking. They would hold me back and I would be the adult who couldn't even pass kindergarten.
Despite my statement that I wasn't joking, I doubt you believed it. Maybe you thought I was exaggerating?
I wasn't. Here's a poster of the kind I'm talking about:

Image description: A poster with heading "Whole Body Listening!" and subheading "Larry wants to remind you to listen with your entire body." There is a picture of a young boy on the left, and on the right there are things to be done with each part, next to icons representing that body part: Eyes=Look at the person talking to you, Ears=Both ears ready to hear, Mouth=Quiet-no talking, humming, or making sounds, Hands=Quiet in lap, pockets or by your side, Feet=Quiet on the floor, Body=Faces the speaker, Brain=Thinking about what is being said, Heart=Caring about what the other person is saying.

And now, here's why I would fail special needs kindergarten:
  • Larry wants to remind you to listen with your entire body: UM. NO. One listens by using the brain to interpret and pay attention to the information coming in from the ears. My hands can't listen. I am a literalist, and I would bring this up. I actually knew that when I was the right age for kindergarten, too. So there's that.
  • Eyes=Looking at the person talking to you: As long as the general area of the person is good enough and they don't demand that it's actually their eyes, I can manage this one, usually. Enough to have managed in mainstream classes where they aren't always focused on it, but probably not enough for a special needs kindergarten where it's one of the big focuses. (Look, look, look!)
  • Ears=Both ears ready to hear: Not an issue, generally, but I haven't the foggiest how they assess that one. You can't look at my ears and tell when they are ready to hear or not, and sometimes being ready to hear and understand requires covering them to reduce the volume. Which they would probably consider not ready to hear.
  • Mouth=Quiet-no talking, humming, or making sounds: As far as I go, that works fine. I could do that when I am supposed to be listening. That's like, the only one which is easy to verify that is not an issue.
  • Hands=Quiet in lap, pockets, or by your side: I can't do that, and I have better things to do than waste time and energy trying. It's also abusive to demand it. No, really. Go read Quiet Hands. But as far as I can't do it goes: I'm in college. I still can't do it. I have to doodle or something. Sewing, knitting, or making chainmail seem to work best, since I don't have to think about what I'm doing with my hands and can still participate in class discussions. And yes, people tried to teach me not to do this. It didn't work. The worst I ever dealt with as far as quiet hands in class was probably the time in Hebrew school when my teacher kept confiscating whatever object on my desk I was fidgeting with. In the end, she took my pen. Yes, really. A teacher took away my writing implement in class in an attempt to get me to sit still. Obviously, it didn't work. There was a string tie on my shorts, and I played with that instead. She threatened to cut the strings off, and I told her she'd be buying me a new pair of shorts if she did. She did not make good on her threat. 
  • Feet=Quiet on the floor: I can't do that one, either. I rock my feet, jiggle a leg, or sit on my feet. Or I W-sit. Yeah, I'm a W-sitter. Yes, I still do it. No, I don't have problems from it. People never made a fuss about that one. I didn't even know it was "bad" until one day in speech therapy when the therapist made comment on it. (I had trouble with the "r" sound for a long time. Actually, I still do. I just learned how to make the Chinese "r" sound and no one notices the difference so I use it all the time.) 
  • Body=Faces the speaker: I can do it, but I don't understand the point. This one wouldn't be a direct contribution to failure, though, since, you know, can do it.
  • Brain=Thinking about what is being said: Ok, yeah, that's a thing. I can do it. One problem: There is no way for an educator to check if this is the case. 
  • Heart=Caring about what the other person is saying: MY HEART DOESN'T CARE ABOUT THINGS. My brain does. I will now proceed to be distracted by this issue because I am autistic and technicalities like that bother me. Whoops. Also, it has the same issue as brain.
That's eight body parts we're talking about. Three (ears, brain, heart) aren't actually checkable by educators. One I can do, but it 100% irrelevant for me (body.) One I can do, but it is easier not to and I listen better when not worrying about it (eyes.) Two are completely impossible for me to accomplish (hands, feet.) Even without having to worry about listening as well, I can't do them. And one, only one (mouth) is actually a useful thing that people can check for.
We've got eight bullet points, only one of which is a thing you can check that is important for my ability to listen, so this isn't exactly the epitome of helpfulness. And three of the things are actively bad, are things where if they were to be part of what I get evaluated on, I would fail. You thought I was exaggerating when I said I would fail special needs kindergarten? If I couldn't use my articulateness to type my way out of it, that would be exactly what happened.

Tuesday, March 26, 2013

Handwritten Copy of Not Really Autistic

Trigger Warning: Still ALL THE GASLIGHTING

Just for fun, here's my handwritten copy of "Not Really Autistic." I did make a couple edits, but you can get the idea of what I was saying... if you can read my handwriting. I really do have handwriting issues. And yes, executive functioning is why it took so long for this to get uploaded. I had already scanned them in before the typed copy was even published here.

Monday, March 25, 2013

After the Tweetchat

Last night, I was the guest on an Autism Women's Network Tweetchat! It was about the upcoming Autism Speaks, I Want To Say flashblog, which is going to be THIS THURSDAY. That's March 28, 2013. There's a storify for the tweetchat here, if that's a thing that would help you. Or even if it wouldn't, it's still there.
I wound up participating as @FlashBlogAutist instead of as @yes_thattoo because of technical difficulties called "For some reason, @yes_thattoo's tweets didn't show up in the chatroom and that was fail." I guess it makes more sense to use @FlashBlogAutist, though, since this was about a flash blog. So it all works out in the end.
And people seemed to think that it was a cool idea, and people wanted to know things, and it was awesome. Also, Tweetchats just aren't that fast-paced compared to the classes I assist online two to four nights a week. Having maybe eight or so people tweeting, refreshing every five seconds at the fastest, just isn't that fast compared to forty or fifty students in a classroom answering questions, asking their own, and having occasional random chatter. In a Tweetchat, I'm allowed to not answer everything. In the classroom, my job description is basically "If a student has a question or gets an answer wrong, you answer, you figure out where they went wrong, and you explain so they get it." So the actual Tweetchat was pretty easy to manage. I had time to go find links and shorten them if I thought something was relevant, like, oh, three things that Amy Sequenzia wrote, two directly related to the AAC video by Autism Speaks and Hacking Autism that the flash blog is responding to, and I think one thing of mine and the post roll.
Basically, the tweet chat was win, I am excited, and I need to actually write my post for the flash blog, don't I? It would be kind of weird to be running a flash blog but not participating.
The other thing that happened on Sunday is that The Thinking Person's Guide to Autism let me know that they wanted to republish one of my pieces, What Reading Self-Advocate Blogs Does, which I'd published first on Autism NOW. And today it's up on the TPGA site too. I guess that might have been one of my better articles, though I have since had thoughts about the term self-advocate. It's true, but it's incomplete. 
Oh, and here's the articles I linked to:
Amy Sequenzia: Autism Speaks, Time To Listen
Amy Sequenzia: Autism Speaks, I Want To Say: A Flash Blog
Autism Speaks, I Want To Say: Postroll! (I want that postroll to have much more on it by the end of March 28th.)
Amy Sequenzia: Not Good Enough, Autism Speaks

Saturday, March 23, 2013

Something Brave

Today, I saw a person with autism do something brave. She used her voice to speak about her own experience. She knew that she was going to have people mad at her, and she spoke anyways. A lot of people underestimate the bravery it takes to do that, even (maybe especially) those of us who do so on a regular basis. That's because it gets easier every time you do it. The first few are the hardest, and I want all the people with autism and all the a/Autistic people who are considering speaking out but are afraid to know it: It gets easier, each time. Really.
Carly Fleischmann said that she thought applied behavioral analysis (ABA) could contribute to obsessive compulsive disorder (OCD.) She read an article about it, and she recognized herself. She opened herself up. She probably knew there was going to be a comment war on her page from that one, she tried to take a softer tone, maybe in an attempt to reduce the online yelling she would receive. If she reads the comments on Six Degrees, she knows how people respond when autistic people or people with autism, speaking or not, suggest that something parents like might be wrong.
And she may not have spent time thinking about the politics of parent-run things to put it into words or explain it to someone else, but you can't be a high-profile person with autism without having lived it and learned what is and isn't safe to say. She knew. And she spoke anyways. It might have been the first time- certainly the first I know of, and it looked written by someone who isn't sure how this will go- that she had something to say that she knew would make therapists angry, that she knew would make psychologists angry, that she knew would make many parents angry, and she went ahead and said it anyways because she thought it needed saying. That was brave. Braver than my writing here every day- the idea that parents and psychologists may be angered by what I say is not new or scary anymore, my identity could be figured out but I am semi-anonymous. For Carly, it is likely new, it is likely scary, and she's writing this to a much larger audience than I will likely ever write to, with her full name attached. Guts, nerve, courage. Whatever you want to call it, she needed it today.
That was something she deserves support for.
No, I don't agree with everything campaign she supports. It's not the point here. The point is that Carly Fleischmann has just made a brave statement and I think that deserves recognition and support.

Friday, March 22, 2013

Why I am not going silent today

Trigger Warning: Silencing of disabled people, probably ableism.

Six Degrees has an event. I do believe they think they have good intentions, and I do believe they think they are trying to listen and help, which is different from believing they actually have those intentions and they are actually trying to do those things.
The event runs from 10am-12pm today, and the idea is to not speak for those two hours, "because some people with autism don't have a choice."
But there are real problems with the event.
I think it's pretty straightforward to state that this is a simulation of disability, which means that Autistic Hoya's critique is relevant. You can find it as black on white here, and white on black here. Disability simulations don't create "I get what it is like to have this disability" in my experience. (Yes, I had to do one for blindness in middle school, and I didn't learn much of anything from it.) If done properly and explained properly, you can simulate what it is like to deal with some of the ableism and inaccessibility issues, but you can't really simulate what it is like to actually be disabled.
For example, you could even explain a not using oral speech thing as getting a taste for how people treat those who do not speak, how people don't want to take the time to communicate with those who do so differently. And if that's what you went in looking to learn about, you could get something out of it. Not the full experience of dealing with it day in and day out for a lifetime, but a taste. It would work especially well if you were using an AAC device for that time, because then it would be clear that you weren't just being kind of quiet during that time. Everyone would know that you were using alternate communication, and they would make judgements based on that, and you would get a taste of that piece of our experience, which is the one that actually needs to be fixed.
Or you could explain it in much the same fashion as the days of silence that other groups have done- as a protest of silencing they face. A day of silence to protest ableist silencing (remembering that behavior is communication, all people communicate) would work well.
But that's not what this one is framed for.
This one suggests that two hours not speaking will explain why autistic people who do not speak have outbursts. (No, it won't. Because it's not just a lack of oral speech that causes outbursts. Communication frustrations are part of the issue, but lack of oral speech and inability to communicate and communication frustration are three different things. No, really. You can have a substitution aphasia that means you have oral speech but not be able to use it to communicate. Without some other form of communication, there won't be communication, which leads to frustration. With another form of communication (AAC is a wonderful thing!) there is the ability to communicate, but frustration can still come from people not being willing to take the time to work with an AAC user, and that's still communication frustration. Or you could be unable to use oral speech but capable of typing. That's a pretty common situation for autistic people, and over the internet, you can't really tell who is a typer and not a talker unless they tell you. And AAC users and talkers and part-time-of-each folks can all have communication frustrations from other people ignoring their communication, not just from problems sending the message.
The event is, I think, conflating lack of oral speech with lack of communication (ironic, considering that the event was promoted in a way that doesn't use oral speech and that most of the discussion of it hasn't used oral speech either.) It's conflating the issues that come from actual communication difficulties with the ones from people reacting badly to those who use AAC. I've spent two hours and longer non-speaking before- properly accommodated, it's not that big a deal. Really, it's not.
And of course, there is the question: Who is this event really about? I know they say it's for autism. Everyone doing anything related to autism says it's for autism. But autism isn't a who. It's a nebulous noun form for autistic, which is an adjective used to describe people whose brains and nervous systems are a certain way. Is the event about autistic people and helping them, is it about making would-be allies feel good about themselves, is it about education? What is the purpose? And does it accomplish that purpose.
I think that the organizers are consciously torn between trying to make it about educating and about helping autistic people, but that it has become about making would-be allies feel good, like they are doing something.
It doesn't succeed at educating as run and framed. It's not going to teach people what it is like to be autistic, and autistic people know it. Some have even commented on the event photo, explaining why. (We/they are the ones who are framing the issues with the event in terms of it not actually helping autistic people, not the ones saying things like that participation would get us fired. You can kind of tell who is who by looking at what issues we say there are.)
It doesn't actively provide help to autistic people either. I don't think anyone has come up with a direct material benefit to autistic people that this event could give, and I don't think anyone can. The only way it could help us was if it helped people understand what it was like to be autistic in ways that led them to accommodate us better, and that requires actual education. It's not going to happen as framed.
It does, however, succeed at making participants feel like they are doing something. You can recognize it by the way that they defend it- the people it is supposed to help show up and explain why it isn't going to work and what you can do instead, as Amy did:
You cannot understand in two hours or two days. And the fact that we don't speak is not the problem. The problem is that there is little understanding and willingness to listen to us. Everybody communicates. Spend two hours trying to understand a different way to communicate or listening to an AAC user.
When the answer to that  is something like this:
That's how you know that it's about feeling good about themselves, because they are claiming it is the right thing to do for people who are non-speaking and complaining about the inability to unite on it, when the people who are not being united, who are saying why it doesn't help and providing helpful comments on what would be good, are the exact same people that are supposed to be helped by it.  That's a form of silencing and it ties into privilege politics and of privileged groups making things about them when they aren't. It makes it extremely clear that the event isn't really about us, that our opinions aren't mattering here which is a common issue with things "about" disability.
One person did notice that both sides are talking from a me-I standpoint. That person missed a couple important things. One, Autistic people are taught from an early age to advocate about all their issues using I statements and to make it about their feelings because we are apparently impersonal, or something. So it's kind of their own teaching doing that on our end. Two, there is a group that this event is actually about. That group, which is autistic people, should be able to talk about it as me-I stuff, because it's about us. If it's not about us, that's part of the problem with it.
Now, for a comment that illustrates the problems we truly face, we autistic people who have communication issues. "... and would get me fired." Yes, that. Even when we can communicate with AAC and the job we want can be done just fine using AAC, the lack of speech thing can and does get us fired or keep us from being hired. That's the kind of thing that we need to be fixing. Discrimination against those of us who communicate differently.
It's a step up from Communication Shutdown, in that not speaking is a thing we deal with as opposed to staying off the sites we use to communicate in a move that doesn't even relate to how our disabilities work, but it's still not actually helping and it still has the ability to give people the idea that not speaking is the cause of the frustration and push people further away from accepting and including, making the problem yet worse. This kind of misguided attempt at helping and spreading awareness is why Autistics Speaking Day started and is needed. Listen to autistic people, that's how you learn about us and our lives.

Thursday, March 21, 2013

If It's A Personal Choice...

Yes, I really do think it's a personal choice, what language you use to refer to yourself. See why I dislike person-first crusaders and insist that they get my language choice correct, every time, without fail, because if they think language matters they can deal with the fact that I think so too and that my opinion on what I should be called trumps theirs. But that I also will call people with autism just that when they say it is what they want to be called. No issues calling Hope Block a person with autism. None. Her choice, I'll do it.
But if you think it's a personal choice and you aren't autistic, you don't get to go telling other people which they should use.
Does asking if we can use person-first language, with the statement that language matters, sound like telling someone which they should use to you? It sure does to me. I bet it did to the person who said it knows it sounds that way, too, since they later only mentioned the part about asking, not the statement that language matters. Yes, this happened on twitter, no, I can't get you their exact tweets because they blocked me after saying that we will have to agree to disagree. (Nope. Can't tell me I have to do anything, that's another point of fail.) but seriously, if you want me to blog about all the ways you failed, the best way to do it is to block me immediately after saying we should agree to disagree, because when we're talking about issues where a power gradient under which you have more power than me is directly relevant, that is one of the ways in which you failed at not being oppressive. I won't use your name, because then people might harass you over it and that would be bad and not-ok, but the things that should not be done are getting discussed.
Yes, it is a matter of personal preference.
There is a difference between teaching your students that what individuals prefer to be called is a matter of personal preference, that some will care and some won't, and that it doesn't much matter between person-first and identity-first for the ones who won't care, and just teaching person-first. Teaching "person-first for the ones who don't care, respect personal preference for the ones who do" is reasonable, because if a person doesn't care which they are called (it happens,) it's not that big a deal what they are called.
Only teaching person-first is how we get person-first crusader types, the ones who call it every time they see  identity-first, and when told not to call me a person with autism, they suggest person-only, not mentioning disability at all. Um, wrong direction, folks. If I'm telling you not to separate my disability from me, I probably don't want you to ignore it either.
That's the point where I got a little snarky. Not really rude, but not the epitome of polite. I said that if they could go person-only, I could go identity-only, and called myself an Autistic, noun, capital A. The person who had originally been asked about using person-first asked why they would hide a disability, and the asker said they weren't suggesting hiding it. (Not sure how "don't mention disability at all" isn't hiding it, unless we're talking about a situation where the disability isn't relevant, which, in the context of the conversation, it was relevant. Also, talking about things is important?)
Seeing the person first, not just the disability, is a pretty common thing people say. I've heard it before. Anyone who has read my "Don't Call Me A Person With Autism" page/posts should be able to tell that I've heard it before. I've heard all the common arguments before. And... if the word person being in there and a person being right in front of you isn't enough to see the person, you shouldn't be working with people with disabilities. No, really. You shouldn't. If you need reminding that an Autistic person is a person, you shouldn't be working with us.
This is the point where personal preference was actually mentioned. Along with the fact that many individuals with disabilities prefer person-first. Which is true. And also completely irrelevant when faced with a disabled person who prefers identity-first or identity-only explaining why you shouldn't tell other people what words to use talking about disabilities that you don't have. Because, guess what? That's why I got into the conversation. Not because I'm opposed to person-first language being a thing-I'm not. I'll use it for individuals who prefer it; I do use it for disabilities that I don't have where there is a consensus on it (meaning basically everything except Blind, Deaf, and Autistic people. Heck, I've even used it for people with autism whose preference I wasn't sure of but whose writing led me to suspect it was probably person-first.) Because I was faced with a person who teaches, who has made no mention of being autistic or of being a person with autism, telling another person that language matters while asking if they can use person-first. Like I said before, that sounds a whole lot like a civilly-phrased "USE PERSON-FIRST" coming from a person who is probably not autistic/having autism to a person using the words to describe not-the-person-asking-for-person-first. Which means it's not cool.
And intent isn't magical. Saying that you didn't intend to "tell others to use your preference to describe not-you" doesn't mean that you didn't do exactly that, and if you don't have a personal stake in it (you don't have the disability,) the person you are telling so having the disability or not is completely irrelevant. If you don't have a personal stake, they can't have less of one, and they're still describing not-you.
And telling me what you think about the intent of teaching person-first is yet another piece of being completely irrelevant. No, really. Intent isn't magical, as not intending to tell people what to do doesn't prevent it, not intending to stub my toe so hard it bled didn't keep me from doing so, not intending x doesn't keep it from happening. The intent of teaching person-first can be respect. I even believe that it is, or at least that you think it is. Which isn't necessarily the same. But if it leads to unwillingness to respect what other people want to be called (hint: not respectful to suggest person-only in response to reading the stuff on my Don't Call Me A Person With Autism page, even if you think you respect my opinion,) then disrespect is what's happening.
You want to agree to disagree about person-first or identity-first being the one to describe the indifferent? Be my guest, you can do that with anyone you want, but that involves not asking them to use your preference, and it involves thinking the issue isn't that important. You don't agree to disagree on things that are important. That's part of how you know/show they are important.

Wednesday, March 20, 2013

Functioning Labels (Again!)

Trigger Warning: Cure talk, silencing

The first time I talked about functioning labels is available in both English and Chinese.


I have thought more about functioning labels, and what they are supposed to be useful for (but basically fail at) and how they are problematic. One of the things that keeps sticking out for me is that if you're considered high functioning, all the assorted other issues you might have, correlated with being autistic or not, are considered separate from your autism unless they are actively being dismissed as just autism to avoid figuring them out properly (things like abdominal pain, for example. Doesn't always mean constipation, not even for Autistic folks.) if you're considered low functioning, though, it's all autism, or it's all part of it.
Have celiac? If you're considered high functioning, it's not part of your autism, but it's considered autism, maybe even the root cause of your autism depending on how into quack cures your parents are, if you're low functioning. Epilepsy? That's really, really common in Autistic people. We're something like eight times more likely than the general population to have it, if I did my math right. People do consider it a part of their kids autism on a fairly regular basis. News flash: if you want your kid to stop having seizures, it's epilepsy you want to cure, not autism. And all the Autistic people who also have epilepsy? They're not really arguing with the whole "cure epilepsy" thing. Because seizures are bad. We know they are bad, even if it's just from watching our friends have them. If you were to somehow cure autism, though, the autistic person who has epilepsy still has epilepsy and will still have seizures. The autistic person with celiac will still have celiac. They might not melt down from the discomfort anymore, but they still have celiac and still can't have gluten. 
Or low muscle tone. Or hypermobility. Whatever. I'd still be just as clumsy (read: still be dyspraxic) if you knocked out the autism. Well, whoever was left in my head would still be dyspraxic. I'm not convinced it would still be me, pretty sure it wouldn't be, but whatever is there would still be dyspraxic. Because dyspraxia, while related to autism, is not autism. None of the assorted things that often come with autism are autism, they are just excuses to call the autism worse than it is and the person low functioning in order to silence both them and the autistic people who are just autistic, or who do well enough with their assorted other stuff that they are considered high functioning and the other stuff therefore considered separate from their autism. 
Mine gets considered separate. But yes, I have my list of things. I have the high pain tolerance people talk about too. Runs in the family, I think, since I'm not even the first one in the family to walk around on broken bones... (I did so on a focally fractured shin and on a fractured foot, not at the same time. The other person did so on a broken ankle, I think it was on multiple occasions.) I'm hypermobile in a few joints. I'm a w-sitter. I have sensory processing issues. I'm dyspraxic, hyperlexic, dysgraphic, and hypergraphic. Oh, and I have gastrointestinal weird of I'm not quite sure what. It involves way my breakfast coming back up undigested two hours later if I go too short on sleep and hiccups, lots of hiccups. It's all considered a separate for me, though, because I'm seen as high functioning/not like my child/ not really autistic depending on which words for not counting people want to use today. They all mean "autistic person I don't want to listen to" anyways, just like low functioning and the equivalents mean "autistic person who I don't believe capable of holding and expressing opinions." 

Tuesday, March 19, 2013

Sensory Friendly Diets, Or Why I Eat Weird

There is no one sensory friendly diet that is going to satisfy the sensory needs of every Autistic person. It just can't be done, and people who try to tell you that they have found one are some combination of confused, lying, and selling something, probably the diet book. 
One example of conflicting sensory needs: I was staying with an Autistic friend of mine, and we were eating different things from each other basically the whole time. She is sensory seeking for mint, and sensory defensive for spicyness above a threshold most people probably consider reasonable. I have exactly zero tolerance for mint, as in, I have melted down in the dentists office when the floss turned out to be waxed with a mint scented wax. They couldn't even smell it at all, and I melted down. Or I have opened the wrong bin of cookies and flipped out, running all the way across the room before anyone else realized I had opened a bin, because the smell of the mint chips was that bad. A friend had to put his nose about an inch from the cookie and inhale to smell it. So that's already rather incompatible. Now add major seeking for spiciness. I have snacked on jalapeños, both pickled and not. I still do, on a regular basis. When I make chilli, the chilli powder and cayenne powder are both measured with a measuring cup. I have been told that no one else can eat my chilli, but to me it is perfect. I have also snacked on other kinds of hot peppers. My second time in China, I went out with friends the last night, and I ate all the hot peppers out of one of the dishes. I think my record was thirteen of them in my mouth at once, chew, swallow. No one else was even able to eat one. When I say I a, sensory seeking for spicy, I mean it.
Or different people will have different texture needs. Or some people do have celiac or milk allergies or other kinds of intolerance that they need to work around in addition to satisfying the sensory needs. There is no way to do it with just one diet to fit all of us. That might be why when a bunch of Autistics get together, you see a bunch of different kinds of food. We are all trying to satisfy our different sensory needs. 
For me, I have my complete intolerance for all things mint, my seeking for most things spicy, seeking for something about olives, and then the rest is mostly textural. Pasta has a great texture. Refried beans have a kind of bad texture. Scrambled eggs are horrible. Hard boiled are the only eggs I can choke down, and even then it's bad. Yogurt is inedible. On bad sensory days, pudding joins it there. Carbonated anything is impossible, even when it's "flat." 
My sensory issues are mostly not a big deal as far as finding food goes, though I think that has more to do with always having been allowed choices in what I eat than in the number of things I can eat. There are plenty of healthy things I can have, and I always got to focus on those rather than needing to choke down the ones I can't eat. (Well, except when I was on antibiotics for whatever reason and I was supposed to eat live culture yogurt. Pain. Pain and misfortune. Alas and alack. Bad bad bad bad bad. Yogurt is made of fail. It needs to remain in other people's possession, not mine. If that can't be accomplished, then it needs to be banned.) Cream cheese and cottage cheese are just as bad as yogurt, if not worse. I don't even like to touch cream cheese. It's disgusting
My sensory issues might be part of why I eat dinner leftovers for breakfast instead of eating typical breakfast food. A lot of the things I can't eat are considered part of breakfast foods, after all. Yeah, I'm just thinking in print right now. I'm not super articulate all the time. 

Monday, March 18, 2013

Spring Break

So I'm back from spring break. It was last week. I could get online some, but mostly I made heavy use of the scheduling function blogger has, writing fairly far ahead and setting days posts well in advance. That's because I was traveling on what I think is a pretty good example of Sports Inclusion For Real. I've talked about my ultimate team on occasion, mostly on the Facebook page I think. Some has been good, some less good. They've been good about the times I have used AAC to communicate with them, handled the question of the spring break trip very well, and have been understanding of the fact that it does take me more practice to get good at certain kinds of movements if I ever get good at all. (The ones that are problems are not directly used in gameplay. That might help.) The less good is mostly related to the stuff I have trouble with, movement wise. They don't really get the "complimenting my effort is always fine, but telling me I'm doing a good job when I am very obviously doing horribly is patronizing and bad" thing.  They are starting to get better about that one since I talked to them, which is a good sign. It means that they're willing to learn in their efforts to be good, meaning that they care about actually being good instead of just wanting to look good. See also: not making videos about how great they are for having me on the team, just having me on the team because I'm on it.

So for spring break, what they did was they gave me a heads up of exactly what it was going to be like, and they let me ask for any extra details I needed so that I knew what I would need to prepare for. Then they let me decide if I thought I could manage it or not, which I concluded that I could. I needed to make some preparation, but it wasn't particularly complicated. My iPod, my iPad, my laptop, good headphones, some stim toys, and a heads up to the team at large that if they need to touch me, they should warn me first and do so firmly. (Yeah, I'm one of the Autistics who has a problem with light touch.) I also told them that warning me meant words, not body language, that the reason they needed to warn me was that I wasn't likely to pick up on the body language and warning me in a language I don't understand isn't exactly useful. And guess what? People were good. They didn't ask me to stay at the parties that they had many nights, I was able to get to sleep at a reasonable hour. They were a bit confused by my apparent immunity to the coldness of the water in the pool in Florida and the ocean in Georgia, but that confuses most people.

And because I was able to take care of myself, using the iPod for music and headphones to quiet the world at need, the iPad and laptop for reading and writing and AAC if needed (it wasn't needed), I had a good time and I was able to play in all the games in the two tournaments. I'm not the best player on the team, not by a long shot. But I'm getting better at keeping the person I am covering on defense from turning it into a contest of who can sprint faster, which means I can stay on the person I am defending. I'm getting better at getting open, too, and I have been a good thrower for a while. Sure, it took until my fifth year of playing to be an actually decent player instead of being pretty bad, but I eventually got there, and ultimate is even more fun when I'm on a reasonably even footing. I can, shockingly enough, actually play the sport. I earned a few turnovers for my team, caught a few discs, made a few good throws. I kept the person I was on from getting open many times. I even managed not to get injured while playing. The Year (and a half!) Of The Sprained Ankles ended almost a year ago, and I've been in pretty good shape since.

No, injury waited until the last day, after all the tournaments and playing was over. I managed to stub my little toe, and I did so hard enough to draw blood. I feel like that takes skill. I also want it to hurry up and heal, because it hurts to walk on it with shoes. You can probably see how that's a problem with class and with working in a chemical engineering lab. I need to be able to wear closed toed shoes, preferably without ouch. I'm stubborn enough to do so with ouch, though, and I ... kinda did that.

It was still an awesome break, though, and I'll be playing in several more tournaments with my team this season. It's going to be great, just as soon as my toe heals up.

Later update: So when my dyspraxia led to me stubbing my toe on the stairs hard enough to draw blood and all? Yeah, my toe is permanently more pointy than it was, and I did wind up losing the toenail. Actual injury. Actual problem.

Sunday, March 17, 2013

What Reading Self-Advocate Blogs Does

I probably wrote this way back in October, and I have had thoughts about the term self-advocate since, but here's one of the things I wrote on Autism NOW. Not sure when the rest will be up.

Trigger Warning: Mentions of abuse, tragedy/burden talk

There's plenty of autistic people blogging, mostly adults since it's mostly adults who blog. Most of the ones I've read, most of the autistic adults who are involved in advocacy that I've talked to, most of the parents who "get it" say how important it is to listen to autistic adults. Some people might take the "what's in it for me" approach. I'd prefer that self-determination and the right to be included in conversations that concern your own future be reason enough, but just in case it isn't, here are some answers of how it really does help parents to read self-advocate blogs and how it really does help kids when their parents "get it," which is a pretty common result of reading them.
  • You can have hope. Too many of the resources you will find about autism paint a rather dreary picture of a person who will never do, well, anything. Self-advocate blogs and blogs written by Autistic adults that don't have any more relation to autism than "the writer is Autistic" both give back the idea that yes, Autistic people really can be satisfied with their lives. It's not even that unusual. It also gives the idea that somehow becoming less disabled isn't a prerequisite for being satisfied with life, which helps with seeing your kid as something other than a tragedy.
  • You can get a good idea of what needs to change so that your child will be OK as an adult. Unfortunately, many of us have had some bad experiences. Reading about them is hard. Imagining that something like that could happen to your child if societal perceptions of autism don't change provides quite the impetus to make sure things do, and it can help you realize that the way you treat autistic adults is, well, the way you are suggesting autistic adults should be treated. That's how you're suggesting people treat your child later.
  • You can get a good idea of what therapies and skills your child will find most likely find useful later (communication skills of some type, ability to speak up about problems, ability to remove oneself from a bad situation) and which ones are less likely to be useful/more likely to make your kid really, really angry (suppressing all stimming, working towards a career that is not interesting, being taught not to have boundaries.)
  • You might get a better idea of what is going on in your kids head. Plenty of people talk about how frustrating it is to have no clue what their kid is thinking, and while we don't know exactly what's going on in any head besides our own, there is a good chance that at least one of us has reacted similarly in a similar situation, and it's reasonable that something similar was going through our heads at that point. (Demanding these explanations is bad because it's not our job to translate your kid, but I'm not arguing if you get that understanding from stuff I write anyways and I'm an educator at heart so I'll probably try to answer if you ask.)
  • You might get a better idea of how your kid can communicate better. (Typing is a favorite of mine, and is generally worth a try.) You can get ideas for things you can try with explanations of exactly how and why it helps and how to tell if it is working. 
  • Being able to think of your kid as something other than a tragedy and a burden is good for your mental health. It's also good for your kids mental health, since knowing that your family considers you a tragedy and a burden really sucks. Like, this is of the level where people have committed suicide over being considered a tragedy and a burden. Talk to any parent of a child who died of cancer- a living child is much better than a dead one, always. Go read Don't Mourn for Us while you're at it- it covers the idea that you have an autistic child, and the neurotypical child you may have expected never existed, is not trapped inside the child you have. Having a mentally healthy autistic child is much better than having a psychologically traumatized autistic child, too. Basically, realizing that your kid being autistic is not inherently tragic is going to be good for both your and your kids mental health. 
Long story short, as long as your goals for your child come anywhere near lining up with the ones most parents of neurotypical kids I've spoken to have (wanting the kid to be happy, satisfied with their own life, not in danger of dying due to physical/medical needs having been neglected, not traumatized, not getting abused,) reading the blogs of autistic people is a way to realize that all this is possible and give you both hope that this will happen for your kid and ideas on how to help your kid make it happen. Sure, you won't be there to take care of your child forever, but if you help your child learn to take care of his or herself and to get help from others when needed, you won't need to be.

Saturday, March 16, 2013

True, But Incomplete

I am a self-advocate. This is true. When I went to my teacher on the trip to India and told him that I am Autistic, and that I was running into issues with sensory overload at the factory visits, that was self-advocacy. When I asked my roommate to come with me for moral support when I went to talk to him, that was self-advocacy. When I give people the heads up that I need space, that I absolutely can not be touched without warning, that is self-advocacy.
But that is not all I am. I am also an Autistic activist. The difference between acting as a self-advocate and acting as an Autistic activist is, largely, in who I am advocating for. As a self-advocate, I advocate only for myself. If my advocacy is primarily for me but also partially for the community at large, calling it self-advocacy is probably ok, calling me a self-advocacy probably works in that context. When I am advocating purely for myself, the terms definitely work. But there are contexts where it does not. Autistic self-advocate is something I am, but it is incomplete. It doesn't tell the whole story, and acting as if it does is ignoring a significant part of my activism, the part that is not only for my own benefit, the part where I am trying to help all Autistic people, all autistic people, and all people with autism.
When I give a conference presentation on the erasure of Queer Autistics? (I will be, next month.) When I write things about autism in general, not just myself? Most of the things I take to this blog to do? Not self-advocacy. The fact that I am Autistic myself is relevant, but I am not advocating primarily for myself. I am engaging in good old fashioned activism, and it's not just for me. Usually, it's not even mostly for me. I write for me in the sense that I write because I need to get my words out, but I write for the world in the sense that I really am trying to change the whole world, starting with my little corner. That's activism. 
So I am an Autistic self-advocate, and I am an Autistic activist, and which way you complete that phrase depends on the context. If you're not sure, go with activist. Most of the things where activist wouldn't work happen quietly, between me an a professor or me and a sports coach, with no ones life to be effected except my own. Most of the things where self-advocate wouldn't work are on this blog or mentioned here. 
Language matters. Context matters. If you're reluctant to call me an Autistic activist, ask why. And don't try to tell me that you're reluctant because it's just words. If it's just words, then you will have no trouble using the words I want you to use to describe me. 

Friday, March 15, 2013

Strangers Fate

So there is a band that I listen to a lot, called PONS. They used to be called High Tide. And there is one song, which I'm honestly not sure where you can get a copy of it besides from a person who has one since their podcast site stopped existing, called Strangers Fate, that is the one I'm talking about right now. It's one of their oldest ones, from I think 2006. And the refrain sticks out for me. 
Breathing down my neck,
Waiting for just one wrong move,
Just one bad step.
I'm a failure to you,
A failure to you,
Yes I'm a failure to you.
You can probably guess why this sticks in my head so much, if you've been reading my blog for a while. Yeah, it's about autism. Well, the song isn't, as far as I know. I'm pretty sure none of the band members are Autistic or have autism or have Aspergers or anything like that. But the reason that the refrain sticks in my head is about autism, in a way. Just one wrong move, just one bad step. When you're not considered a failure, there is some leeway for error. When you're already a failure and trying (in vain, of course) to redeem yourself, every error is more proof of what a failure you are. Just one wrong move, just one bad step, just one more sign of how broken you truly are, how much of a failure you are. And things that shouldn't even be considered errors are now wrong moves. Things that anyone else could get away with are bad steps. And I think that's what they're talking about here too, because it applies to anyone who has been predetermined to be a failure, regardless of reason. It doesn't have to be "You're autistic, and that means you're a failure just for existing." It can be anything. It can be anyone.
Breathing down my neck, waiting for just one wrong move, just one bad step... 
That's what it's like. It feels like someone is breathing down our necks all day, every day, waiting for one sign of our neurology, one sign that is the proof of how hopeless we are. One flap. One time that we "should" have made eye contact and didn't. One repeated word. One hint of perseveration. One wince from a sound that hurts but that others have determined shouldn't be an issue. Just one "wrong move" that isn't even wrong, shouldn't even be wrong, shows what failures we are because that's how you see us.
Breathing down our necks, waiting for just one wrong move, just one bad step. We are failures to you, failures to you, yes we are failures to you.

Thursday, March 14, 2013

How Access Works

Trigger Warning: Mentions of assault

It's not that hard.
In the United States of America, an event, location, etc which is open to the public (there are certain exceptions for religious institutions, which I am aware of, but that is besides the point. I'm talking about places where the ADA does apply,) needs to be accessible. Business, in particular, need to be accessible. There are, once again, some exceptions for unreasonable burdens, which are calculated in terms of monetary cost, not in terms of how much of a pain it is to do something. Remember, financial cost.
That means that "Turn your camera flash off" is not an undue burden.
That means that "Put up this sign I made letting people know to turn flashes off, here's some tape" is not an undue burden.
That means "Avoid one specific person with your camera" is not an undue burden.
If it really goes that far, it means "Just don't hire a photographer" is not an undue burden, because that's actually cheaper. It shouldn't have to go that far, since turning flash off isn't hard. Really, it's not. The good cameras don't come with flashes anyways, you have to buy them separately. Which means that not having a flash to begin with is actually cheaper, once again.
Yeah, it's not an undue burden to not have a flash on a camera. (Portland Lindy Exchange, I am looking at you right now.)
Access isn't that hard. I've had people do it, and properly, on sufficiently short notice that I wouldn't have held it against them if they had been cobbling together not much of a much. (By that, I mean they didn't even know there was an issue until after I melted down in front of them, we were in India, and they still met my needs, which were, much like "turn flash off," free to meet. I know from experience. It's not that hard.)
And it's not just physical disabilities.
And saying that we should just stay in our homes all our lives isn't any more OK than it is to say to any other group of people. Disability rights are human rights. Would you tell a person that in order to avoid being assaulted with deadly weapons on a regular basis, they need to remain in their homes, or would you ask what's so wrong with their environment that they are being assaulted with deadly weapons on a regular basis and make some attempt at fixing it? Would you defend the assault as within the rights of the attacker?
(Hint: The answer is that you wouldn't defend it as being within the rights of the attacker to assault someone with a deadly weapon. If that's not your answer, you have some human rights issues to work through, like right to life.)
Do you think that disability ends with physical ones? It doesn't. Epilepsy, autism, sensory issues, dyspraxia, learning disabilities, intellectual disabilities... there are a lot of disabilities besides visible physical ones, and none of them are allowed to make a place inaccessible. That's the law. That's just how it is. You don't even have to like it, you just have to do it.

Wednesday, March 13, 2013

On W-Sitting

I'm a W-sitter. There are two positions I can sit in for any length of time without anything either hurting or going to sleep (I can comfortably sit on my feet and often do, but they then go to sleep. My feet go to sleep from being sat on so often that people actually thought it might be a diabetes sign. Then I showed them how I sit. Apparently it is sufficient explanation and no one is worried about diabetes on the basis of sitting on my feet anymore.)
One is cross-legged. The other is a W-sit.
And yes, I am aware that there are some potential issues that can come from W-sitting. Chronically spraining my ankle because of the pressure I put on it sitting on my feet and then falling over because my foot is, well, asleep, is worse than having to stretch out my hamstrings and do exercises to strengthen my lower back. Just putting that out there. Using the whole range of motion that I have isn't bad for me in itself, and the W-sit is part of my range of motion. The first time I was told it was bad, interestingly enough, was in speech therapy when I was probably 10. And so I tried not to. And it didn't go well.
See, my dad had a boat, and I sat on the motorbox facing backwards watching the water come out of the motor. Yes, it's a kind of Autistic thing to do. I know. I'm Autistic. Anyways, it was a kind of lying on my tummy sort of sit, and I couldn't find a single other comfortable way to do it. I sat on the motor box by lying down on it, hanging onto the bar in front of me, and W-sitting with my legs to make them fit onto the motorbox. That actually involves opening my hips even wider than a standard W-sit, which is not a stretch for me at all. I crouch in a sort of vertical version of this too. It's very comfortable.
So yeah, I'm a W-sitter. I'm 20, I've been one forever. It's not always a big deal, really. You know how they had you bend over and try to touch your toes in gym? I can bend over and lay my hands flat on the floor without bending my knees. My hamstrings are not tight, I'm just a W-sitter. 

Not Really Autistic

Trigger Warning: LOTS AND LOTS OF GASLIGHTING. No, really. The whole thing is basically one long litany of my spouting back gaslighty things about my own life, the things people who don't believe I'm really Autistic think and say and tell me.

I melt down. But I can't call it that. I'm just being bad. Even though I don't do anything "worse" than cry, rock, maybe find myself unable to speak, I'm just being bad because I'm Not Really Autistic,

I shut down. It is just laziness. It is not the quiet relative of a meltdown, and I can't call it that because I'm Not Really Autistic.

I look at a mess and can't figure out where to start. I freeze. Executive functioning skills have nothing to do with it. I'm just lazy. If I really wanted to clean my room, I could because I'm Not Really Autistic.

I walk into a wall. It's the same stretch of wall I already walked into three times this week. I'm just not paying attention. I can't be dyspraxic because I'm Not Really Autistic.

I jump at the bell. Everyone else stopped within the week, this is my senior year. Seven years, and I'm still jumping, because I'm a big baby. I'm a wimp, that's all. I don't have sensory issues because I'm Not Really Autistic.

I stop talking because I don't want to talk. Ignore that I know exactly what I want to say and can't, forget the times that it's made my life harder. I'm just being rude and selfish. I don't have language issues of any kind because I'm Not Really Autistic.

I don't like scrambled eggs. The texture doesn't make me gag or anything, I just don't like them. It's not a sensory issue, I don't have any because I'm Not Really Autistic.

I try to do lunges, it's for sports. I can't get them right, I must not be trying very hard. Ignore the years I've spent trying, forget that I have gotten better and it's just not enough. I'm not trying. That must be it, I can't have motor issues because I'm Not Really Autistic.

I have social anxiety. It's all in my head. Ignore the bullying for the way I move, forget that you joined in. I wasn't bullied for moving like an Autistic because I'm Not Really Autistic.

I don't recognize your face. I don't care. I'm not faceblind, it's not a cognitive issue, because I'm Not Really Autistic.

I make eye contact. Ignore the fact that it's really your nose or forehead, forget that I don't know your eye color after knowing you for years. I make eye contact because I'm Not Really Autistic.

I have trouble when plans change. It's just because I don't like change. I'm not panicking, my heart isn't racing, I just don't like it. I'm OK with there never having been a plan, so it can't be an Autistic thing. Besides, I'm Not Really Autistic.

I remind you about the rules. Tell me no one cares. I don't care either, not really. My difficulty with the concept has nothing to do with autism because I'm Not Really Autistic.

I hate the phone. It's not a combination of auditory processing issues and social expectations I can't meet. I never compared it to losing two words in three of a foreign language and still being expected to get the meaning. Social cues aren't a foreign language, because I'm Not Really Autistic.

I don't get my hours in on time. It's because I don't care about the money. Executive functioning issues have nothing to do with it. They can't, because I'm Not Really Autistic.

I have social issues. I don't really feel like a foreigner in my own country, though. I never claimed immunity to culture shock because it didn't matter if I was a foreigner here or there. People make sense to me because I'm Not Really Autistic.

I hit my head on the same bit of ceiling every day in third grade. I was just careless. Maybe I was trying to be funny? I don't have trouble figuring out where I am in space because I'm Not Really Autistic.

I didn't just lose speech. I just switched to AAC for effect. I couldn't have predicted that going through this list would stress me enough and prepared a line to explain. I don't have selective mutism, after all, because I'm Not Really Autistic.

I flinch at the camera flash. Like with the school bell, I am just a wimp, just a baby. It's not another sensory issue that I don't have because I'm Not Really Autistic.

I just can't let it go, sometimes. I'm not perseverating, I'm Not Really Autistic.

I don't like tights. They don't really make me miserable. I'm just quirky. Maybe it's a feminist thing. No, it's not a sensory issue, because I'm Not Really Autistic.

Leggings don't itch. Putting on socks that are still wet doesn't hurt (couldn't be, I can leave them on if they get wet, after all!) Flashing lights aren't disorienting. Switching activities isn't hard. Powdered gloves don't make my skin crawl when they get wet. The sonicator shrieking against the glass doesn't bring tears to my eyes. The scent of the mint chips didn't drive me across the room when I opened the wrong cookies. The dentists mint-scented gloves didn't trigger a meltdown. Mint is totally fine. I never watched one gear spin for nearly an hour. I don't repeat nouns. I'm not echolalic. I'm not dyspraxic. I don't have sensory issues. I'm not hyperlexic. I don't manage to be both dysgraphic and hypergraphic. I'm Not Really Autistic.

Monday, March 11, 2013

For My Autistic Child

My Autistic child will grow up in a household where AAC is just a part of life. She will see computers being used for AAC from birth, or close to it. How could she not? I use my iPad or computer for communication on a regular basis, even with people who are in the room with me. She will have access to a computer that has AAC programs on it well before she is talking, unless, of course, she manages to start talking at six months or some such thing. It happens. If so, she'll still have access, and she will still be taught how to use them. Picture based AAC will be how we start, I suspect, since infants generally don't know how to read. One button talkers with things like "potty" and "juice" will be set up in relevant locations, probably before she can crawl anyways. AAC won't be an accommodation, it will just be a part of how the house is set up. People might be bragging today about getting devices or picture card sets into the hands of eighteen month olds, but I will beat that. I am seriously saying that there will be simple applications, simple devices, in my Autistic child's reach before even today's best tests could tell that she is Autistic. (She will have the same access if she's not actually Autistic, but I am guessing that I will have Autistic kids because genetics is a thing.) 
Flapping, rocking, and spinning will be accepted. I would be such a hypocrite if they weren't. If a food is a sensory issue, that's that. She won't have to eat it. I know what trying to swallow things that are sensory issues is like, I wouldn't force that on anyone. Eye contact will be strictly optional. I wouldn't be able to tell if she was making it anyways, since I don't look at eyes. Anyone who tries to tell her "Quiet hands!" will be summarily removed from the house. Fidget toys will be around the house. Perseveration will be accepted and encouraged as the learning style that it is. 
My home will not be a place which claims to accept autism and Autistic people, then has posters around which make it clear that being Autistic is not ok. My home will be a place where autism is assumed as the default, and envy one else will have to adjust to Autistic needs. Even if I do not live in Autistic House, it will still be an Autistic home. 


From thAutcast, because his questions make good post fodder.
Routines are import to many autistic people. How do routines help you (or an autistic person you know well)? I am especially interested in stories about what happens when routines are disrupted.
And now I answer.
I like my routines. I remember them pretty well, too, as long as they are the same and they are repeating. I memorized my schedule very quickly in middle and high school, and every time they changed the order of the periods on me, I was confused and often went to the wrong class. By often, I mean almost every time. Disrupt a routine that is already extant, and I get pretty confused. 
And I form routines pretty easily. I can't let myself skip class once, because it will become a routine and then I'll never go. Not exactly a good routine. So I need to be careful.
If I know with enough warning that disruption is coming? Or if I knew that there wasn't going to be a routine? Or if I knew that there was going to be a semi-permanent change in routine, like the transition from semester to summer?
I'm fine with that. 
I might not choose to do it all that often, but give me a good enough reason and I will.
Without a reason to do otherwise, though, I'll do the same thing, day after day or week after week. It's always the same, day after day... Same enough that I don't need to think too much about it, anyways. That's the point of a routine, and it lets me do ALL THE THINGS.
No, really.
My senior year of high school, my routine for Thursday was: 5:00am wake up, get ready for school, 6:15am leave house on bike, 6:25am arrive at school, 6:30am "Independent Study" in East Asian Philosophy (there were 12 of us...) 7:30 my first "real" class starts, 1:50 school ends, then I think it was math team, then homework, then eat dinner on the bus to swim team, then swim, then bus back, then ride bike back. I'd get home at around 7:30pm, eat, shower, sleep. 
And I managed it.
Except that time that swim was cancelled and I was really confused and didn't know what to do with the rest of the day.
Or that time last week when my Chinese teacher thought that changing up my tutoring schedule was a good idea. Yeah, multiple meltdowns, thankfully none in front of her because she doesn't know I'm Autistic. I'd been meeting for the same two hour session all semester, and then she decided that it needed to be twice a week, not one long session. We'd been doing it as one long session because that was the only way to make our schedules work, but noooooo. We had to break the routine and try to find a non-existent other time, and it's been chaotic ever since and I've melted down and it's bad.

Sunday, March 10, 2013

My Token Autistic Speech

Trigger Warning: I'm not 100% sure, someone tell me why I'm convinced it needs one.

If someone ever asks me to speak and it's clearly as a token... well, let's just say they might find this substituted for whatever presentation they approved at the last second. It's snarky, it's sarcastic, and it's clean enough to use. And FYI, if you want to use it? As long as you say at the end where it came from, you can use this verbatim. This is meant to be used.

First, I want to thank you for inviting me to speak here today as your Token Autistic. Today, I am going to be talking about how much of a success story I am. The idea behind this is to give you hope that some day, the child with autism may grow up to be as much of a success as I am, and may even get to be the Token Autistic at a conference like this one some day. There, they too will talk about how they couldn't do anything independently when they were kids and now they are successful and it's so wonderful. They won't tell you about the fact that they still dig their fingernails into their hands hard enough to leave marks, and they won't let you see them rocking. You will have taught them better, because their autism is something that they need to hide, to overcome. They will make the next generation of parents feel comfortable. The cycle will continue.
Or will it?
I have the same trappings of success you wish for your children, and you speak of how you would consider your child recovered if they had these same trappings. You want to know how I overcame my autism in order to do this.
I didn't.
I embraced it.
*******Insert personal relevant stories here*********
My first Autistic Obsession, my first special interest, my first perseveration, whatever you wish to call it, was math. I know, it's stereotypical, but it's true. I spent a lot of time doing math. I've been told that I watched college math lectures when I was very young. Maybe that's why calculus looked familiar when I took it in tenth grade. That's not the point. The point is that I won the individual chapter MathCounts competition twice, in seventh and eighth grade, and I came in sixth in the state in eighth grade as well. I was on the "A" team for my high school's math team every meet for the entirety of high school, and I went to the regional championships with my high school four times. This is the sort of thing that people like to call overcoming autism. It was no such thing. It was embracing autism. Mathematics was my Autistic obsession, and I was good at it. I brought fidget toys to meets. I wore the exact same outfit to every meet from seventh grade up through the most recent math competition I was in, Putnam my freshman year of college. I became known as Purple Dress Girl for my long sleeved ground length purple dress. For ARML, when I had to wear my team T-shirt, I wore the T-shirt over the long-sleeved purple dress... in Pennsylvania. In June. I brought my routines to my Autistic obsession. Embracing, not overcoming.
I played sports in high school. Specifically, I ran cross country, swam, and ran spring track. What these all have in common is that if I don't want to interact with people on any given day, I really don't have to. The last two years, I went for Ultimate in the spring, which did involve more interaction. That and lunch were often my only social interaction in the day- I saved my energy for them because I knew it was limited. I disengaged when I needed to so I could engage when I wanted to. Embracing, not overcoming.
I never learned to sit still and pay attention at the same time. I can't listen, take notes, and retain what I hear all at once. So I didn't push it. I knit in class. I sewed in class. I basically made a chainmail prom dress... in class. My chemistry teacher got a picture of it, since I spent nearly two years of her class making chainmail. I found ways to satisfy my need to stim and not disrupt the class. Embracing, not overcoming.
In college, I kept playing Ultimate. During practice one day, I lost speech. Yes, that happens sometimes, still. No, do not pity me for it. I neither want nor need your pity. I have what I need- AAC. At the end of practice, no one had really caught on to the fact that I had lost speech, but there had been plans made for some team members to go for dinner after. I wanted to be social. Speech wasn't working. I pulled out my iPad. No one even blinked. I used the tools I had so that I could do what I wanted to do, rather than trying to hide the fact that I am, in fact, Autistic. Embracing, not overcoming.
I have studied abroad on several occasions. I didn't get culture shock. If I already feel like a foreigner in my own country, is it really a shock to feel like a foreigner? I played my lack of culture shock for all it was worth, and I think I got the better immersion experience for it. Embracing, not overcoming.
*******End relevant stories here***********
I could go on. The point is, I didn't overcome autism. It's not even an idea that makes sense. I couldn't use stubbornness born in my brain to overcome the way my brain is wired.
I have lost count of how many parents, much like yourselves, have told me how inspiring I am, how they would consider their children cured if they could speak like me, if they could write like me. A cure is not the secret. I am by no means cured, and if you were somehow to offer me a cure, I would refuse it. This brain is what makes me who I am. I embraced it, and I found the best ways to work with it, not against it.
That's the secret.
Since I am not giving the presentation you expected, and since I can speak, at least at the moment, you probably think these things don't count. At least, that's what you'll tell me. So tell me this: If you think those ways of embracing my autism don't count, why are those among the traits you teach your children to suppress?
In case that bounced, here's a list of difficulties I have written in your language, to tell you that I really am Autistic.
I have what is very clearly selective mutism.
I can't sit still in class.
You see the posters of "proper listening" in your child's classroom? I can't do it. I would, legitimately, fail your child's kindergarten special ed class, today. I am not even joking. They would hold me back and I would be the adult who couldn't even pass kindergarten.
I have picked at my skin until it bled. Recently.
I've stood barefoot in the snow for the sensory input as a way to calm down. Last snowstorm.
A friend of mine has scars on his hands. From my fingernails.
My hiccups are so powerful they can knock me off my feet, still.
Dyspraxia, Dysgraphia, Hyperlexia, SPD, Hypergraphia, Alexithymia, Prosopagnosia, possibly ADHD.  Yeah, I've got a pile of things beyond "just" autism too.
Yes, dysgraphia and hypergraphia both. I got banned from handwriting my math homework (twice!) because of illegibility issues, but I can't NOT write.
I followed the wrong person around skiing for almost an hour thinking it was my dad. As in, I am actually face blind.
No, I don't look people in the eye. Faces are OK, eyes generally aren't.
I've melted down... alone... in a foreign country... on multiple occasions.
I've melted down and lost speech at sports practice... as a junior in college.
If my ultimate team wanted to make one of those "inspirational" videos about me and my participation on the team, the totally could. I would never give them permission, but I know exactly how they could do it and exactly what they would say.
I melt down from sensory overload on a semi-regular basis. Even when I don't melt down, the sensory overload is pretty obvious. Hands over the ears, whole body stiffening, eyes squeezed shut, not able to respond to what you ask me, rocking on my feet if I haven't curled up in a corner yet. Basically, all the reactions you're trying to teach your kids not to have.
I wasn't joking when I said I would fail if I were in your kid's special education kindergarten class. Or exaggerating. I survived mainstream kindergarten because they didn't think I was disabled and so I could get away with more. Also because mainstream kindergarten have me the chance to show at least some of my strengths.
That's what I'm going to close with. Shut up about the merely weird, spend some (but not too much!) time on the actually problematic, and go play to whatever strengths your kid has. And if you think they don't have any? That means you're missing them. It might not be a stereotypical autistic strength, and it might not be what you expect of a "spliter skill" or "perseveration," but there will be something. Play to it.