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

Friday, June 29, 2012


Diversity, we stress.
Diversity is good.
We should strive for diversity.
But only for so much diversity.
We should be ourselves.
But only if our selves are within an acceptable range of difference.
And even within that range,
Even within acceptable difference,
We still push, sometimes for sameness.

Why do we say one thing and do another?
Are we not always told that actions speak louder than words?
Are we not always told that we should treat others the way we want to be treated?
Are we not always told that it’s OK to be different?
Why do our actions always belie our supposed values?

I think we are afraid of what we do not know.
I think we are afraid of those who are not like us.
I think we don’t REALLY want diversity.
We just want to THINK we want diversity because we’ve been told we should.

Thursday, June 28, 2012

Actual empathy

I'm taking a literature class this summer because it's for a general education requirement. To graduate from my university with a bachelors, you need to pass a literature class. (Where besides education can you be forced to pay for a service you do not want? Well, also this health insurance thing, since some people in my country are deciding is the way to go: REQUIRE people to buy health insurance from a corporation to fix the fact that these corporations have lots of problems and our health care system is a mess. But there is a huge outcry at that, and none at this.)
Anyways, we read a short story where a blind man visits a couple after his wife dies. The story I actually liked. The narrator talks about how the blind man meets none of the stereotypes he had about the blind, and how this blind man can and does travel alone. The blind man is clearly competent and not asking for pity. I don't actually know anyone blind, but I could believe that a blind man like the one in this story exists.
My problem is with classmate and teacher reactions to the idea of being blind. No one went as far as to call it a tragedy, but they did call the concept of not having sight unimaginable. That's just not true. People imagine it all the time. People LIVE it all the time. It exists. They use seeing eye dogs and canes, or not. Some learn to navigate using something like echolocation. There are blind cyclists and all kinds of other things. There is a HUGE difference between being blind or deaf and imagining blindness or deafness by closing your eyes or blocking your ears. If you close your eyes, you who is used to seeing, you feel the loss. You are missing information you expect to have. If you are blind, and you have been blind for a while, you are used to not having that information. You are used to working with the information that you normally have, which does not include sight. It's like any disability: you learn to cope, and for you, it's just life.
What we imagine disability is like from an abled perspective is not true empathy. I'm not sure true empathy is even possible for an experience so different. But that doesn't mean we should claim that our tragic view of disability has anything to do with empathy. It really doesn't.

Wednesday, June 27, 2012

Vis a Vis French

So, I am making an attempt at learning French on top of Chinese on top of everything else I am doing, since a good french text for beginners was on sale for $ my university bookstore when I went to get the literature text I need for those pesky general education requirements. The french text is called Vis a Vis. I want to know french. Because I liked it back in fourth grade that one year that I actually took French. And I forgot almost all of it. That's not cool. I need to go learn French again.

Tuesday, June 26, 2012

I'm not usually mad at you, but I have every right to it when I am.

Seriously. I am usually quite happy to interact with allistics (means non-autistics, and it is NOT an insult. Just like neurotypical is not an insult.) At least, I usually am at times when I'm in shape to be interacting with anyone. I very rarely get angry with allistics as a group. Individual allistics do seem to be more likely to anger me than individual autistics, but I think that's more because communication between people with different neurologies and experiences gets hairy and we mutually misunderstand each other than anything else. The allistics I deal with regularly are decent people. If they weren't, I wouldn't deal with them regularly. As an adult, I do have that much control over my own life.
But sometimes? Sometimes, allistics as a group drive me nuts. Like when they talk about how vaccines cause autism, or when Autism Speaks reacts more strongly to the loss of frozen autistic brains than to the murders of autistic people, and practically everyone calling them out on this is autistic. Or when the jury found the couple who kept their autistic boys in a cage to be not guilty on all charges. When people try to silence autistic adults for disagreeing with them, ignoring the fact that the next generation will do the same to their kids. The list goes on. So, when I say that I am mad at allistics as a group right now, I have plenty of reason to be mad. Oppressed groups are allowed to be mad at their oppressors and all. Since I can pass for merely weird, usually, (well enough that I could run around a foreign country as a minor and not have people asking where my parents were, actually,) I have not personally faced all that much stupidity about being autistic. But I can still be mad at the people who do the oppressing. And sometimes, I am.

College NOS

Over at The Thinking Persons Guide To Autism, they had a guest post called Business-NOS: A Standard of Professionalism. It got me thinking about what things I do differently (and will probably always do differently) because I am autistic. PDD-NOS isn't actually my diagnostic label, but the incidents I'm referring to are with people who don't know I'm autistic, so I guess it's part of Weird Smart Kid-NOS now. Because I'm pretty sure that's what they think is going on. Once I've gotten myself into an environment where my sensory weirdnesses aren't a problem, that's pretty much how I present, anyways.
College-NOS is going to class in a cotton T-shirt, an (often cotton knit) loose, ground length skirt, and no shoes.
College-NOS is bringing a stim toy to class. Sometimes it's graph paper and a pen, since those geometric designs are a form of stimming for me. Sometimes it's a piece of fabric with an awesome texture (aka it's SILKY.)
College-NOS is getting banned from handwriting math homework because my handwriting is THAT BAD, and the professors know I know LaTeX.
College-NOS is sitting cross-legged on chairs, or on the floor when possible.
College-NOS is talking the departments that are closest related to my obsession into letting me ignore some pre-requisites.
College-NOS is possibly breaking the computer system that keeps track of what degree program(s) you're in.
Research-NOS is dressing completely differently in the computing lab/at research meetings and in the chem lab. In the chem lab, it's dressing the way I have to in a chem lab, though my lab coat is tie-die. In the computing lab and at meetings? Welcome to the College-NOS dress code.
Research-NOS is FLAPPING in research meetings, because this is really awesome and flapping is how I express that. Hi Obsessive Joy Of Autism. I totally know what you're talking about.
Life-NOS is realizing that I really am good enough at what I do that people can work with the weird to keep me around, and not being ashamed of it.

Friday, June 22, 2012

Getting Paid to Perseverate

E over at The Third Glance briefly mentioned that she gets paid to perseverate, and that this is AWESOME, while talking about ``significant disruption to daily living." And now I get to be paid to perseverate too! And no one cares if I flap while I read papers. No one cares if my shoes come off while I read papers. I just need to be still enough to not break/mess up experiments while in the lab and wear closed toed shoes in the lab, and I need to get my work done. How's that for acceptance? Getting paid to perseverate is seriously the BEST THING EVER. So please excuse me while I go perseverate about sciencey stuff some more!

Thursday, June 21, 2012

Presuming Competence

Presuming competence means working under the assumption that Person X can make decisions about his own life. It means working under the assumption that he does, in fact, know what is and is not in his own best interest. It means accepting his statements on what he can do for himself and what he needs help with. It means that if he says he can do B unaided, but not A, you believe him, even if A is supposed to be significantly easier than B. It does NOT mean erasing our difficulties by saying that ``Well, if you're so competent, you don't need my help. You can do it yourself." We're not talking about that kind of competence, which is being competent at any specific task. We're talking about competence in the sense of being competent to make our own decisions and to know what is and is not in our best interest. Presuming that being able to do B means we can also do A, even as we tell you otherwise, is the exact opposite of presuming competence. It is presuming that you know our abilities better than we do, presuming that we are incompetent to know what we can and can not do. If you truly are presuming the most basic form of competence, you will never do that. And that most basic form of competence is the one we need presumed the most, for all people, of all abilities and disabilities.

Tuesday, June 19, 2012

And no one said a word

I'm not sure why I was so worried about wearing the neurodiversity T-shirt. No one said a word about it. I'm not sure if I should be relieved or disappointed. Maybe both. Relieved because, well, I am relieved, and disappointed because no one cared enough to ask. Also kind of disappointed because I feel the need to be relieved. But it's reality. Awareness makes me scared to admit to my own neurology, remember? So if no one asks, I don't have to say the words ``I'm autistic," and I don't have to be quite so scared. Not a great sign of how our society is, but it's honest.

Monday, June 18, 2012

Autistic Pride Day

So. Tomorrow is Autistic Pride Day. It's the day when those of us who want to shout ``I'm autistic, and it's FINE, thank you very much" can do so in a big group. It's probably a rather uncomfortable day for any autistic people/people with autism who wish they weren't autistic. (I'm guessing most of the folk who wish they weren't autistic prefer to be called people with autism, but I'm really not sure.)
Out here on the internet, I'm shouting Autistic Pride. People who read this blog are looking for something about autism. I can do that. In the non-internet life? I'm going to be pretty scared when I go to the chem lab and my robotics class wearing that neurodiversity T-shirt. To some extent, I'm wearing that shirt BECAUSE I'm scared to. See, if there were no embarrassment whatsoever to the fact that I'm autistic, I wouldn't be scared to wear a shirt that out and out said that I AM AUTISTIC. As is, I'm nervous with the neurodiversity one, which doesn't even state that the wearer is autistic. No matter what I might like to think, I'm not entirely happy about this autism thing. Sometimes, like when I don't understand the subtexts flying around me or when I can't handle the sensory input I'm getting, I'm pretty embarrassed about it. But if I'm going to be happy, I have to be comfortable in my own skin and in my own head. So I'll be wearing that shirt tomorrow, more because I'm scared to than in spite of the fear. (insert whatever adjective you feel most appropriate) Autistic Pride Day!

(Apparently it was actually today. Oops. Still wearing the shirt tomorrow.)

Autistic Artistic Carnival

I'm in it. You should go check it out. WOOOOO. Autistic Artistic Carnival 2012 Submission Posts

Saturday, June 16, 2012

Verbal abuse of autistic student sparks calls for change

Trigger Warning: Abuse

Verbal abuse of autistic student sparks calls for change
I actually think this is a pretty decent article. Seriously. Father notices that son isn't quite as usual. Asks school about it. School says nothing. For whatever reason, his son can't tell him exactly what's going on, so he sends his son to school with a digital recorder, and he gets it on tape that the teachers are verbally abusing his son. That's what happened originally. This article is talking about how someone took a stand against the abuse of autistic kids by their teachers. It even admits that many people think this is a common issue, and that there are calls to change. Maybe the article will bring more people to shout about how wrong this is. For once, an article in mainstream media about autism is pointing out that people are abusing us and shouldn't be, and that some people are aiming to do something about it. And the suffering that parents are talking about here, while not nearly as bad as what the kid being abused is suffering from (abuse), is something you can legitimately call suffering. Watching/knowing that your child is being abused and that the system doesn't really care is something you can suffer from. Asking for advice on how to make a similar recording if you have suspicions something similar is going on is a good idea, because it gives you evidence. When he talks about the challenges that special ed teachers face, and how they don't have the tools they need, it feels like some abuse aplogetics, which is problematic, though. Yes, we need to give special ed teachers the tools they need. Yes, they need to be more patient than regular teachers, sometimes. And that means you need BETTER background checks on them, not fewer. It means they need to be held to a higher standard, not a lower one. Abuse by them should be punished more severely, if anything. And we need more voices demanding properly trained teachers for all our students, special education and not.

Friday, June 15, 2012

UK finds that 1 in 100 ADULTS is autistic, too

Oh hey. I said I was going to talk about this post jet-lag, and now I'm talking about it. Over in the UK, they actually looked around for how common autistic spectrum disorders (grrrr.... I do not like the word disorder because it's not STRICTLY a disorder. It's a potentially disabling different order, not a lack of order.) Anyways, it turns out that if you properly evaluate the adults, about 1% of them are autistic too. I guess we're looking at better identification, not a sudden epidemic. Good to have some evidence to back up what I was pretty sure was the case anyways. So: Autism is just as common in adults, but anyone who talked/functioned really at all without supports wasn't getting identified as even having anything, but now we can tell if someone is autistic should they show up and get evaluated. No epidemic. Some of us are just wired differently, and we can actually get quite a bit done, especially if you make some allowance for the problems we have which aren't actually related to the job we're supposed to do.

Not guilty? WHAT?

Trigger Warning: Abuse, getting away with abuse because the victim is autistic

So, I know this is a few weeks back now, but remember the couple who caged the autistic boys? They were found to be not guilty on all charges. They kept the boys in a caged room. Experts said this was ideal because autistic children preferred to be left alone anyways. There is a difference between being left alone and being kept in a cage, where being alone is not a choice. See, when you ``leave me alone" I can decide to come out and interact with you if I want to. If you put someone in a cage, they can't. Do you think they would have been found not guilty if the boys hadn't been autistic? Nope. It would have been child abuse, at the least. Maybe the unlawful imprisonment charge wasn't the best one- maybe it should have been child abuse. But the fact is, the jury found the couple not guilty pretty fast. The jury also thought it was OK to keep autistic boys in a caged room. The jury is clearly short on empathy for the autistic boys. That's a problem. There is plenty of (often above and beyond anything normal) empathy for parents, even when they are obviously abusing their autistic or otherwise disabled kids, but almost none for the autistics themselves. And that's probably why this couple was not found guilty.

Thursday, June 14, 2012

Ugh. China. Why?

China just gave two of their companies a monopoly on internet telephony by making it illegal to use anyone else's service for that. One effect is that skype is now illegal there, so far as I can tell. They have quite the tendency to block out foreign products and make people use Chinese versions there. (ex: yes, facebook, twitter, and youtube are all blocked in China, but there are Chinese equivalents that aren't blocked for all of them. Google recently got out of China under pressure, and Baidu, the Chinese equivalent, has essentially no competition anymore.) So, China has a lot of protectionist policies, and it seems to like cutting itself off from the world some. It's kind of annoying, since I study Chinese, have been there three times, and will be going again for a year. And, you know, this blog is based on google stuff? Blogspot is a google product. So I'll have to sharpen my getting to blocked sites skills, I suspect. I can understand what they're trying to do- they want to help their economy, and they want to keep people on sites they can censor themselves if need be. Also, this is China. China has a history of isolating itself. Not news. But it's still annoying.

Awareness is...

Trigger Warning: Abuse/murder of autistic people

Awareness is the reason I don't feel comfortable telling my teachers that I am, in fact, autistic.
Awareness is the reason I honestly prefer people think I'm just weird.
Awareness is the reason one of us needed a lawyer to take a rock climbing class.
Awareness is the reason we are made to feel less than.
Awareness is the reason we are made to feel broken.
Awareness is the reason we are made to feel like burdens.
Awareness is the reason we don't get hired for the jobs we ARE competent to do.
Awareness is the reason people think our lives are tragic.
Awareness is the reason our parents get sympathy when they kill us.
Awareness is the reason people think killing us is merciful.

Now do you understand why I don't like autism awareness?

Wednesday, June 13, 2012

Something Good

So, I was chatting with a friend from math team when he was ``tumbling," which is apparently means using tumblr. So I asked what his username was and followed him. I also gave him the heads up that ``and I guess I should probably tell you that I'm autistic... since if you read much of anything I posted, you'll figure that out anyways..." And he didn't say anything. I asked him a few minutes later about his complete lack of reaction, and his response was that he'd been tempted to say that I do very well with it, but that he saw my post about functioning labels and wanted to read it before he made a fool of himself. Which is actually a great reaction. Seriously: He admitted that he thinks I do well with it (I'm totally cool hearing that, since I interpret it as ``Your coping skills are really good!" which is also a good thing to say as far as I'm concerned,) he saw that I don't like functioning labels, and decided to wait to say anything until he understood why. He decided to read some of what is out there so that he knows at least a little before joining a conversation. It's a good reaction.

Autism brains melt in the freezer

Freezer failure at brain bank hampers autism research.
I'm sure it does. It's probably not hampering any of the autism research I actually care about, but as a science person, I'm always sad when someone's research gets messed up. And, while I'm not sure what it is because of the focus on ``what causes autism anyways" and ``how do we make people less autistic" that's running around in the research done on brains, I'm sure there ARE actually useful things we could learn by studying autistic brains. But Autism Speaks owns this collection- I doubt they're likely to do that kind of research. But they COULD, someday. And about a 50 of the brains they could have used for it are gone because a freezer failed. And... for the actual autistics who want to be not autistic anymore, it's not my place to tell them no. (I don't think that being re-wired to not autistic is something a parent can choose for a kid who doesn't want it; the person who is actually autistic has to want it.) If and when they find a way to make someone not autistic anymore, my fear isn't for the people who want to become neurotypical- it's for those who don't, especially minors who don't. I mean, I'm pretty sure that rewiring someone's brain and potentially causing that someone to get culture shock from his or own cognition qualifies as abuse if the rewiring was unwanted, so maybe that's how we keep people from doing this to anyone who is unwilling- actually protect autistics from abuse, then make it known that ``curing" autism against the will of the autistic is abuse.
And I'm off topic. Brains melted in a freezer. Autism Speaks is worried. This was enough of a perfect storm that they are wondering if there was foul play. I hope there wasn't, because sabotaging research is not the way to protest an organization.

Tuesday, June 12, 2012

Neurotypical Einstein

Neurotypical Einstein Combed His Hair.

Yeah. This was in ThAutcast. I laughed. I am always annoyed when someone makes a definite statement about exactly how someone from history who we can never meet was non-neurotypical, but that they were? In some cases, like Albert Einstein, that much is pretty obvious. I wouldn't be surprised to hear that he was, in fact, autistic, but we can't be sure. But... neurotypical Einstein probably wore socks and probably never asked a neighborhood girl where he lived. Neurotypical Einstein is not the Einstein we had.

Monday, June 11, 2012

Bleach enemas don't cure autism...

Trigger Warning: Bleach enemas as a treatment for autism, cure attempts, abuse

So. Who's heard of MMS? Who knows that it's essentially industrial strength bleach? Yeah, if you read other autism blogs, you probably already know this. But just in case: Over at the AutismOne conference, which is either really closely associated with or run by Generation Rescue (Jenny McCarthy's autism ``charity,") someone gave a presentation about MMS, miracle mineral solution, being used to recover children from autism. Now, much as I hate the idea of anyone trying to ``cure" a big part of what makes me me, I'm well aware that if there were an actual, working ``cure," parents everywhere would be telling each other ``Hey. This WORKED," and as the bunch who tried because of being told about it discovered that it really did, it would go viral, not be remarked upon as child abuse. And then there wouldn't be much of any autistic kids left.  This, however, is child abuse. You can't rewire a brain by putting bleach up someones rear end. It just doesn't work. There is no mechanism by which it should work, and there is no evidence that it actually does. Which means that it's USELESS child abuse too! Seriously. Bleach is a strong base, and it burns and scars. Scar tissue doesn't grow last I checked. These bleach enemas are doing permanent damage to these kids. (As far as I know, they haven't done this to any adults, perhaps because the autistic adults who have anything resembling autonomy in their lives wouldn't go anywhere near it.)
If you don't believe me that pouring bleach down someones rear is child abuse, think on this: if someone wanted to pour bleach down your rear, how would you reach? How about your (neurotypical) child's? Your child's (neurotypical) friend? Yeah, I thought so. You'd call it dangerous, ridiculous, abusive, and possibly all three at once. So why is it OK if the kid is autistic and a quack says doing this will make the kid NOT autistic? Answer: It shouldn't be, but since people seem to be missing the part where we're people just as much as the rest of you are, it's been done. And it shouldn't be. So STOP.

Sunday, June 10, 2012

Congrats to my sister!

So, no real names of family members and all, what with right to privacy and the fact that some of these family members are minors, but my sister had her Bat Mitzvah yesterday and I am so proud of her! We went to the temple, and she read Haftora, and she led some of the prayers. At the end of the service, all siblings+bat mitvah girl (there are 4 of us) led Adon Olam. Then we had a party!
At the party, there was loud music, so I was pretty exhausted after, but I've found that as long as I keep moving (dancing is useful for that) I don't overload too badly. I guess motion can cover up some of the other input? Whatever, it was fun. For the cake, she honored a bunch of people with candle lighting. (This is fairly common at bat mitzvahs.) Her parents (we have the same dad, but not the same mom) were first, and I was second, and when music came on after each honor, mine was American Pie! She said she liked how creative and quirky I was! (WOOO!) So yeah, that was good.

Also, research has been kind of busy, and I've been working on getting that cafepress set up, so I haven't been posting as much about the autism stuff. I will get back to it, I promise. It might not become a daily thing again, but it will come back.

Friday, June 8, 2012

Autism and being Trans*

Trigger Warning: Invalidation of trans* people due to neurology

(Cisgender means that you identify with whatever gender you were assigned at birth.)
Autism Spectrum Disorders in Gender Dysphoric Children and Adolescents
That's the study. Over on Tumblr, there are quite a few autistic trans* people being pissed because people will add this to the ``you're not trans*, you're just autistic" invalidation fire. So, here's what I have to say, because that kind of invalidation is NOT COOL.

One: Why is GID (gender identity disorder) considered a disorder? Is this like when homosexuality was considered a disorder? I think it is! (Yes, I am aware that there are actual medical things that need to be done in order to treat someone. The DSM is still a manual of mental illnesses, so being trans* doesn't really fit there. There are other places trans*ness can go.)

Two: How does knowing that there is a correlation between being trans* and being autistic help people? (What was the purpose of the study?)

Three: There is more than one thing that could be going on. Autistics could actually be more likely to be trans*. I could believe it. Or autistics could be less aware of/care less about the social norms that encourage people to keep quiet about their gender identity if it's not the same as the one they were assigned at birth. Somehow, I don't think anyone will argue that that's not at least partially a factor.

Four: I highly doubt this to be the case, but even if 100% of trans* autistics were trans* purely because they are autistic, go read what that means again. These people are trans* because of the way their brains are wired and how this affects their experiences of the world and entire lives. That means they are trans* because of WHO THEY ARE, last I checked. So, even if it somehow turns out that trans* autistics are trans* because they are autistic, they're... still trans*. If causation doesn't actually invalidate the trans* identity (it doesn't,) then correlation sure doesn't. 

Thursday, June 7, 2012

I actually analyze ``I am Autism."

Trigger Warning: Ableism, tragedy model, quotes from the "I am Autism" transcript

``I am Autism."
No. No, you aren't. Autism is an abstract label applied to a huge group of people, and no one person can be autism.
``... I am invisible to you until it is too late."
No. See, there is no such thing as too late. Whatever you might say about early intervention being important... we can help an autistic person of any age. Also, fear-mongering much?
``I know where you live. And guess what? I live there too." Um, hello fear-mongering. I hadn't seen you since... the last line of this thing.
``I work faster than pediatric aids, cancer, and diabetes combined." Yeah, except those three all have the ability to kill people. Autism... doesn't. (Epilepsy, which sometimes comes with autism, can be fatal. But epilepsy is not autism.)
``And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain." So, maybe this is where that myth about some insane portion of marriages fail when the kid is autistic comes from? Also, who is gaining from the money spent? It's not the abstract concept. It's either the kid or the parent. Also, fear-mongering.
``I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me." Ok, seriously? Sometimes it's not much, but autistics do sleep eventually. And that embarrassment is because of societal norms. And not everyone wants a cure anyways.
``And the truth is, I am still winning, and you are scared. And you should be." No. See, that's fear-mongering. That's something you're NOT supposed to do about disabilities.

The rest is trying to sound hopeful. It's trying to sound like a message of strength and solidarity. And it is failing, because it is treating a big part of who these people are as the enemy to be defeated, that autism is an outside force that came for the kid. That just isn't the case, and seeing it treated that way is hard. It tells us we're broken, and essentially everything they said was a problem in Don't Mourn For Us. (Yes, I really like that essay.)

Wednesday, June 6, 2012

Mom learns son, 2, has autism.

That's the article I'm talking about right now. The article starts off with the scary 1 in 88. Seriously guys? If you're going to include the Aspergers, PDD-NOS, and generally anyone who doesn't feel their own life to be a tragedy in your statistics, you better include what we're like if you want to include our numbers. Still not saying you have to pretend that the people you're focusing on now don't exist- just don't pretend WE don't exist either.

And it seems that ignoring all autistics as people is going on here, since (begin sarcasm) apparently both (implying two) sides of the spectrum are covered when you're a social worker who deals with autism and you have an autistic kid. We can apparently cover it all without an actual autistic person. Who knew? (end sarcasm)

And they called the diagnosis heartbreaking in the article, which is largely a human interest story about how she copes with the tragedy of having an autistic kid. I seriously think that Don't Mourn For Us should be required reading for anyone who wants to write about autism. If they go on to ignore it, that's not good,  but at least they KNOW what we hear when they call our lives tragedies and pray for a cure, and they can't feign ignorance of how much they hurt the actually autistic when they call it a heartbreaking diagnosis and all.

And what's with the special diets? I mean, yes, a lot of us have gastrointestinal weirdness, but coming up with a diet that deals with that wont consume entire days. It sounds to me like someone told her that certain diets can help recover kids from autism, which just isn't the case.

SoulCollage strikes me as a bit odd, but if that's how she wants to do her grieving, away from the living child she has, and if that helps her, it's her business, not mine or anyone else's. I think talking about it in an article her kid might read one day violates that ``away from the living, autistic child she has" part, though... Because googling your parents names is totally something people do, and that might come up. It might even come up if he googles his own name. (Have most people done that out of curiosity? Or is it an autism thing? Or is it a me thing? I dunno. But he could find it is the point.)
And she says:

“If you know a person who has a special needs child, make sure you are paying attention to the parent as well. Check in with the parents frequently.”
It's true... but she put it in an article that payed no attention to the kid at all... so I'm not sure what the as well is. As well as what? As well as ignoring the kid? No, don't ignore the kid. Find out if the kid is happy. Make sure the parents aren't abusing the kid in the name of therapy. Check in with the kid frequently. Check in with the parents too, but don't let the parents answer for the kid when you check in with the kid. Deal with non-verbal answers if you have to, but get the answers from the kid.

Read more here:

Tuesday, June 5, 2012

To ``Why do I flap my hands"

I see you found my blog as your result when you searched for ``why do i flap my hands," and I hope you left feeling better than you came. I'm guessing you found the post Why Yes, I DO Flap My Hands. Deal With It.  I hope so, anyways, since that's probably the best post here for you to have found with that question. Because it's OK. It really is. If you flap your hands when you're excited, or when you're upset, or for any one of a million reasons, it might be because you're autistic. And that's OK. I don't know if you'll see this, but if you do, here are some things to think about, preferably without freaking out:
1) As far as I know, that most likely means you're autistic (somewhere on the spectrum. Don't worry; it's still OK.) It's not the DSM, which you can find if you want, but a pretty good checklist of what an autistic person thinks can tell autistic from not is here. I happen to like it because it includes strengths and weaknesses, instead of focusing on the weaknesses like the DSM does. (Yes, the comment from June 2 is me.)
2) Getting evaluated may or may not be helpful to you, depending on a variety of factors. Assuming that you are autistic here, but... just because YOU know you're autistic doesn't necessarily mean it's in your best interest to let anyone else know that you're autistic. Some people are good about it, some aren't. Choosing to seek a diagnosis or not is a choice only you can make. (If you're under 18, you can choose ``not" by way of not telling anyone that you're suspicious. Choosing ``yes" could be a little harder, though, because of the part where you're a minor and your parents are in charge still.)
3) You're not alone, whichever choice you make. I put the pieces together a good bit before I got evaluated because in my specific high school situation, a diagnosis wouldn't have been helpful. I wasn't the only one who put the pieces together at that point, but the other people who did were good about not pushing the issue of getting an eval vs. not. Others get diagnosed as young children. Others know and choose never to seek diagnosis. It's OK, whichever way you go.
4) Whatever you may have been told, autistic adults exist, and autism is not uniformly tragic/strictly bad. There are parts that are pretty awesome and parts that really stink. Awesome: I will take you all down at math unless you have WAY more experience with me, and all your four leaf clovers are belong to me. Stinky: LOUD. LOUD IS BAD. Also, the tendency to not pick up on it when someone is joking or asking a rhetorical question is pretty annoying. And of course, the whole range of disability that you probably think when you hear ``autism," since the self-harming stims do exist and all. Not for everyone autistic, and not for me, but it exists.
5) Breathe. You'll be fine. You can choose to talk to autistics about your concerns or not, conclude that you probably are autistic or not, seek diagnosis or not, and it's all fine. Just do me a favor and don't tell me that I identify myself wrong or that I'm not really autistic if I don't want a ``cure," and we're probably good.

Monday, June 4, 2012

The Depiction of Autism and Why it Matters -Arianne Zurcher

The Depiction of Autism and Why it Matters

Go read it. Seriously. Then come back and read what I think of it down here if you want.

So: I can totally understand why she didn't name the video ``Autism Every Day" by Autism Speaks, since the organization did take it down, and they might go all ``slander!" on her. I don't think they could do so successfully, since, you know, they DID post that video, but better safe than sorry. Also, mainstream media probably doesn't like Autism Speaks Bashing, and most of the autism community can probably tell which video she's talking about. If not, well, it's that one. I've watched it. I then melted down. (My meltdowns don't include and self-harming behaviors; I'm fine. I mostly cry and shake/rock, and I'm either non-speaking or I'm ranting about the trigger, with no middle ground there. That was a ranting one.)

She then explains that yes, raising an autistic kid can be harder than raising a neurotypical kid. She's right. It totally is. Sometimes it's just because the challenges you get have nothing to do with the ones you expect, and sometimes there are strictly more challenges, some of which pose a safety risk. Both are valid, and neither should be presented as ``This is autism, period." I don't think our current functioning labels are the way to do this, since that's a rather black and white depiction, and I'd note that she doesn't use those labels in her description either. YAY! Instead, she sticks to talking about exactly why the depictions we get are bad, things like ``Telling the world to be scared of a group does no favors for that group" and ``Yeah. Suggesting that they're all savants or useless is going to lead to discrimination, and it's also NOT TRUE."

So she talks about how these depictions initially affected her. From what I've seen on Emma's Hope Book, which she also writes, I believe it. In some of the earlier posts, she was talking about cures, since we're portrayed as broken and all. And she admits to being worried about Emma's future. I'd be worried about Emma's future too. Anyone who is KNOWN to be autistic is going to get discriminated against, and what I've read on the hope book makes it sound like passing may not be an option for her. (I've kinda given up on this passing thing, and I'm relying more on people not putting the pieces together on the basis of a perceived functioning level.) Also, she has some challenges that might actually impair functioning. Because yes, that exists in autism. It really does. Good coping mechanisms can help with a lot of it, good supports with more (yes, we really do need those resources!), and respect helps with those differences that aren't actually harmful, like the non-dangerous stims or not making eye contact.

So yeah, I think this is a good article. She admits to the fact that autism can be scary at times, but that it's not the only thing autism is by any stretch. She admits that she is sometimes scared. And then she says that showing fear and despair as the only relevant emotions is hurtful to autistic people. She says that it's not the whole picture, and that she has an autistic daughter who struggles, makes progress, and fits so many descriptors besides just autistic. And that's exactly right. Portray it as the way it REALLY is, a huge spectrum/constelllation. (I like the constellation idea better, personally.) We've got the people who never communicate using words at all, those who type, use AAC, sign, write, speak, or any combination, including resorting to another method when talking fails. We've got people who are highly successful and visible, people who live fairly normal lives, people who are advocates, people who chose not to participate in advocacy for any number of perfectly valid reasons, people who could hurt themselves during a meltdown, people who wont hurt themselves during a meltdown, people who can delay a meltdown long enough that you'll probably never see it actually happen, people who don't work because they actually can't, people who don't work because they are discriminated against, people who will/do/have gone to college, people who wont go to college, people who can live alone, people who can but probably shouldn't, people who absolutely can not live alone, people who will marry and have kids, people who wont do one or both of those for reasons that may or may not have anything to do with being autistic, people who drive, people who don't drive,people who, yes, smear feces, and people who would be disgusted at the thought of touching their own feces for longer than absolutely necessary. Oh hey, that is a pretty wide range. Maybe want something n-dimensional instead of only 4-dimensional? Point is, ANY ``this is autism, period" type depiction is going to hurt us, and a fear-mongering one is especially bad. And she seems to get it. YAY.

(Can anyone tell how happy I am to get to review an autism article from a fairly mainstream source that is actually really good?)

Sunday, June 3, 2012

A View From the Boundaries: On Things That Won't "Cure" Autism

Trigger Warning: Abuse, abusive cure attempts

A View From the Boundaries: On Things That Won't "Cure" Autism
Allowing their children to be restrained and electrically shocked
Hitting/abusing their children every time they stim
Drugging their children to produce behavior modifications, like preventing stimming

Saturday, June 2, 2012


Trigger Warning: Abuse/murder of autistic people

Wrong. Wrong wrong wrong.
You might not even understand why it is so wrong, and you definitely don't understand why it bothers me so much.
I don't even know how to make you understand.

How do I explain that being autistic does not make it OK for people to torture you in the name of therapy?
How do I explain that false treatments that would be considered abuse if the kid wasn't autistic are... still abuse when he is?
How do I explain that triggering PTSD is not an acceptable way to fix a behavior problem, ever?
If you don't get that those kids feel that pain, that those kids are fully human, how can I explain that?
Why do I have to explain that?

I want to explain.
I want you to understand why this is wrong.
I want to shout at you that I know autistics can feel pain because I am autistic.
But I see how you don't think we're quite human.
I see it when a man keeps his two autistic sons in a cage, the prosecution can prove that he did so (he admitted that he did so!) and the jury thinks it is reasonable protection.
I see it when mothers murder their autistic children and then the other parents rally around the murderer, rather than condemning her.
I see it when, as soon as I tell you that I am autistic, I am suddenly too autistic to understand what is best for my own life.

Even though I was competent five minutes ago, before I shouted ``I know autism doesn't have to mean X because I'M AUTISTIC," now I am not.
Now I am autistic.
Now I am one of those people who can not possibly have emotions, who cannot possibly feel.
Now teaching me is not education, but intervention.
Now abuse is therapy.

Because I'm not really a person either, it's OK to ignore me.

To make you understand why the wrongness bothers me as much as it does, I have to tell you something.
That something is the one thing that will also make my opinion invalid in your eyes.
It will make you think I have no empathy, that I can't possibly know what it's like to deal with someone as
I think you have no empathy.
If you had empathy, you wouldn't need me to tell you that torturing an autistic person is torturing a PERSON, and that it's wrong.
If you had empathy, you would realize that painting autistic people as tragedies can't be good on our end, and you would stop.
But you don't stop.
And if I try to tell you why I care so much that you stop, I am the one who can't understand.

Friday, June 1, 2012

I'm back and jet-lagged.

I am back. I am jet-lagged. I woke up around 3 this morning. Yay! Anyways, stuff I am planning to write about soon:
1) I'm going to examine exactly what is wrong with the ``I am Autism" video, line by line, because that video is so bad that it still deserves is this much later. Also, Autism Speaks never apologized for it.
2) The couple that caged their autistic boys was found not guilty on all charges. Dear World: WHY? HOW? WHAT?
3) Oh, hey. There is an article in the UK finding that somewhere around 1 adult in 100 is autistic. I guess autism isn't a new thing, since if it were, we would find some random age gap where evaluating people doesn't find this ~1% autistic anymore. (sarcasm alert: I'm well aware that autism isn't new, but that the label is.)
4) Mother learns that 2 year old son is autistic? We already have enough parent based awareness, thank you. Now stop calling autism tragic before the tragedy model gets another one of us killed and the killer still considered a good person who cracked under stress. It's not cool.
5) An open letter to Jenny McCarthy as well, since I've already written one to Playboy.
6) Probably more rants about Generation Rescue, since I'm not going in to that open letter without more knowledge of exactly which abuses in the name of treatment she condones, and I'm not going to be able to keep quiet about what I read until I get the actual letter written.

I'm also going to print and mail that letter to Playboy.