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

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

Wednesday, May 30, 2012

Leaving India

So, I only have a couple hours left in India. I didn't really understand how today's company visit was related to what I want to do, but most of the visits didn't relate to what I actually want to do, so whatever. It is what it is.
Over this trip, I learned a decent bit. I learned about manufacturing techniques, which was kind of the point. I got reminded of just how far from the norm my biorhythms are-being up by 6am and crashing at 8pm is not the college norm. There were times when we hadn't even eaten yet at 8!
I also learned that some people can actually be decent human beings about autism and the difficulties I have that are best explained by the fact that I'm autistic. (Only learned this because I also learned just how obnoxious my sensory issues really can be.)
Most of what I've learned falls into one of those two categories. So yeah. India was good.

Tuesday, May 29, 2012

Accomodations done RIGHT (which should be more common.)

So, right now I want to prove that doing accommodations correctly (and significantly better than was required, considering that I never actually went to disability services) is possible abroad on trips abroad with university. Next time someone tells you it can't be done, well, yes, it can.
So: Disability services had no paperwork from me (I was only diagnosed a month ago...) and I did not tell the professor that I'm autistic (a shellfish allergy kept me off a study abroad program once. No way was I going to tell him I'm autistic until it was much too late to knock me off the tour over it, and hopefully not telling him at all would work. It didn't.)
That means that he didn't have to make ANY accommodations, at all. That's right. Someone had the decency to make accommodations he did not have to make. Why there are people who wont make accommodations is a good question, and I would like to shove this example in all their faces and say ``See this? Yeah, I thought so. IT'S NOT THAT HARD."
So, for the accommodations I got (all offered right off the bat, as soon as I admitted that I am, in fact, autistic. Because he's a good human being and has some idea what is and is not needed.)
1) He handed me ear plugs, and said I could use them whenever.
2) He handed me a mask for dust/smelled, and said I could use it whenever.
3) If I still overload on a plant visit, I can just leave the room where I overloaded. He'll explain to the person leading the tour if need be.
4) If there are two visits in a day, I can skip the second.
5) Everyone has been told that they are to make their notes available to be for the write-ups, since I can't really understand what's being said over the noise of the factory floor, and I've had to excuse myself a couple times.
6) If it looks like I'm on the edge, he checks in to make sure I'm OK. If I say I'm fine, that's the end of it. If I say something is a problem, he finds a way to fix it.
7) He makes sure there are non-carbonated beverages available to me. (I had already been doing that, but it makes it a bit easier since he actually speaks the local languages.)
8) He (jokingly, I think) informed the students who knew about my being autistic that he would throw them in the pool fully clothed if they made a big deal about my accommodations. No one has. (I think most of the group knows by now, but he hasn't been the one to tell anyone. Some of them have seen me writing blog posts and asked directly. I may not bring it up, but if you ask me, I'll tell you.)

And the total cost of these accommodations? 10 rupees for a water bottle, and asking one of the factories for the ear plugs/mask during the tour. (-10 rupees as the difference in cost between the water and the coke that would have been purchased, since he didn't buy the coke. Either way, we're talking under a dollar, and I offered to take care of it.)
So: It's not that hard. It's really not. That was all done in a foreign country with no notice and no documentation. If you can't do that with notice when you are legally required to, there is something wrong.

Monday, May 28, 2012

Have some more about India

On the way to the hotel in the mountains, there was a road closure due to landslides or some such thing, and we didn't get to the hotel until almost midnight. That was interesting. Then I ate and slept. Because, you know, eating and sleeping are useful.
Next day we didn't have any plant tours, so no sensory overload, which was awesome. I also went to see a temple that had a lot of monkeys, and I took video of monkeys playing on a playground structure. I also got a salwar kameez for a friend and the salwar part for myself. Sadly, my salwar turned out to be too small around the ankles and too short (not by THAT much, but I can't wear it.) Since the salwars were one size, that's probably a good sign for the friend I got the salwar kameez for- she's a bit smaller than me, both height and width. I also briefly got online with a rather slow connection, which let me queue the posts that have gone up from then till now.
Sunday, we did a lot of driving, since we had to get from Shimla to somewhere in Punjab. We also did a small tour, but the guide tried to rip us off. (At the bottom, he said 250 rupees/person. Once we got to where the horses were, he changed it to 500 rupees/person. So we walked instead, and wound up only giving him 200 rupees/total for the about a quarter mile of car ride to the place with the horses. Because, you know, trying to rip off tourists isn't cool.(50 rupees is about $1))
And the top of the mountain was not nearly what the guide claimed either. WOOHOO trying to rip people off.
Monday was two plant tours and a visit to the company that helped the professor in charge of this trip (no names here, but he will be getting an AWESOME review on ratemyprofessor and all the other sites of that kind I can find. More on his awesomeness later.) to set this trip up. That visit turned into a very brief and pretty cool tour. It was the only one where I didn't get any sensory overload so far! (I skipped the second tour, which I've been doing on most of the double tour days because it would be too much sensory overloading and I would be in not good shape. I never realized how many sensory issues I really had until I wound up in situations I had always instinctively avoided...)
For dinner, we went to a combination bakery/italian place. Good pasta, good oreo shake. But it was late. Then I went to sleep. Then I woke up and it was morning and I wrote this. Today we will go to a brewery and that is the story of that.

Why Yes, Let's Talk About Stimming.

Trigger Warning: ABA, Abuse

Since I'm planning to write a letter to Jenny McCarthy as well as to Playboy, I'm going to be reading the stuff she and her organization, Generation Rescue, put out on the internet. Most of it is so bad that I CAN'T leave it unanswered, so here comes answers.
The original article in this case is ``Let's Talk About … Stimming." The title makes it sound like stimming is something to be afraid of, but honestly? With the exception of a few actually dangerous stims, like hitting ones head against the wall or slapping oneself in the face, stims are only ``bad" if we decide they are. Maybe it's social expectations that need to change, not our stims. Because really. I flap my hands for a bunch of different reasons, and it hurts exactly no one.
His intro paragraph says that the treatment of these behaviors (stimming behaviors) depends somewhat on the cause, which is true enough if you WANT to treat it. Not a disease, but hey. Generation Rescue goes for cures, and Jenny said there were no autistic adults, so I guess stimming must be stopped. Using their (warped) logic, it makes sense.
He then goes to look for why the kid is stimming. (Since I'm not a kid, I guess he wouldn't look for why I stim. But then, the leader of his organization said I don't exist. Also, I know why I stim.) He points out all kinds of discomfort, which is true enough, and I'm more than happy to see stims that are to deal with discomfort stop because the discomfort stops (not if the kid is just hiding it, though.)
He also suggests removing electronics that provoke stimming. If it's that the electronics are causing discomfort, OK, but the ones he's describing sound more like happy/excited stims to me, so I say leave it be. Also, is he seriously talking about taking the iPad away from the autistic kid? Does he have ANY idea how many non-speaking autistics use iPads to communicate. Taking away someone's only method of communication is abuse, and it looks to me like he'd do it if the iPad was also leading to stimming. Because, you know, education can only truly begin when the kid is table-ready, aka not stimming. Besides, if you take away the way he communicates that isn't speaking, maybe he'll learn to talk. (It doesn't work that way.) So, as perhaps you can tell, I think taking away the electronics is often going to be a horrible idea and/or an abusive tactic. That iPad isn't just a toy, guys.
He eventually gets to stims that kids ``just prefer" to do. I'm not sure how accurate ``just prefer" to do is- I can stop most of my stims when I really want to, but it takes more effort than it does to stop something I ``just prefer" to do, and the super excited hand flapping and jumping isn't going anywhere even if I try. So I think he missed the ``that's how they express happiness" stims that nothing needs to be done about unless they are dangerous.
I was sad when I heard about the young man who said he wanted to rock and stim to the lights at Disney but that he knew it would be inappropriate. That young man has been successfully convinced that the way he is is wrong, and that it is not appropriate to do anything besides hide the way he is.
Finally, I know he says that children are more teachable when they aren't stimming. I disagree. I remembered what I learned much BETTER when I was allowed to fidget (stim) than when I had teachers who would confiscate my fidget toys, up to and including taking my pen on one occasion. I still don't sit still in class. You don't know that stimming means not paying attention, since it frankly doesn't mean that. Have you TRIED teaching something while the kid was flapping or rocking rather than trying to get the kid to stop first? It just might work. Of course, you're going for cures... so you want all symptoms gone, which means stimming has to go. That's why it's autism improving dramatically in your final sentence, not the coping skills or the abilities of the autistic kids improving dramatically, isn't it? You're trying to make them act neurotypical so you can claim a cure.

Saturday, May 26, 2012

Autistic Hodgepodge- an idea

I had an idea. I don't know what anyone else thinks of it yet, which is why I'm putting it out there. (Tell me what you think?) We have the Loud Hands Project which will be a compilation about autism-related stuff by autistics. Why not have something similar, but where the stuff we're compiling is anything that can be printed in a book, and the only requirement is that the creators are autistic. Maybe it could be a series of compilations- some with just one persons stuff if they have enough to make a book themselves, some with a few people putting their creative works together.
There would be a couple ideas behind this. One: I'm sure I can't be anywhere near the only autistic who does a few different kinds of creative thing which aren't necessarily related and no one of which would be enough to make much of anything out of. But if we make a hodgepodge of it all, helping each other organize our hodgepodges in ways that somehow manage to work, then put it all out there, then we all get our stuff out there. Two: I don't want people to think that autism advocacy is all I do! You probably don't want people to think autism advocacy is all you do either, since it probably isn't. We have lives. If we show the world that we do more than just one thing (we're fully developed people, unlike many of our portrayals in media), it might also help our cause while doing something that isn't directly advocacy.
So, would anyone want to join in on this? And what would we call it if we do this? So far, ``Autistic Hodgepodge" is the best I've got, and I don't know if that's what I or anyone else would really want to call it.

Autism Linked to Breathing (sarcasm alert)

So, there is this blog called Yeah. Good Times. It's written by a mother of two, and one of the two is autistic. Usually, the idea of anything written by a parent of an autistic kid kind of scares me, since they are the source of so much tragedy rhetoric. But... this specific article, at the least, is AWESOME, and what I've seen of her other stuff is great too!. It's a spoof study based on the fact that every autistic is born to a mother who breathed during pregnancy. The sarcasm is dripping so thick, they went and said this was an important link, doing so with a (presumably fake) quote by one Jennifer McCarthy, who she called ``Professor of Hyperbole and Disinformation at Johns Hopkins University" and credited with leading this study. I laughed so hard when I read this. Have at the article. Also have at the comments. Everyone was laughing about it and having a good time last I checked.

Yet More India

So, it's Friday here, and we just got done with the last factory trip of the week. We get Saturday and Sunday off from factory visits, and boy, am I glad. This daily dosage of sensory overload is tiring to the extent that I haven't really been recovering fully at night. Being a bit short on sleep because the time I want to go to sleep often comes and goes while we're still out as a group probably doesn't help. But we get two days to rest in the northern mountains, and that I am expecting to be much better. I should be able to get enough energy back to make it through next weeks factory visits and still be able to enjoy the fact that I am in INDIA. (I have been enjoying the fact that I'm in India, by the way. It's just that when I have limited time and energy, the things that are demanding an outlet the most are all that will get that outlet, which means it's the problems that are coming out.)
Anyways, today's factory makes support items like neck braces, knee braces, and walkers. They apparently have almost a fifth of the Indian market for the products they make, which is pretty good. Yesterday we went to the golden temple and then a factory. You can't wear shoes in the golden temple, which was awesome because I had an excuse to go barefoot. Also, it was really pretty, and the tilings on the ground had some of the most complicated geometric designs I've seen here (mine are still more complicated, but I don't tessellate them.) I took pictures of those, so I've got quite a few pictures on my camera that are probably interesting only to me. That's OK, though. It is my camera, after all. The factory we went to after the golden temple makes cricket equipment. I don't really know much of anything about cricket (or any sport that I don't play, really), but the factory was pretty cool. There wasn't much automation, since they're working with wood, which has variable density, and precise balance is apparently important. It was also a very interesting factory layout- they had a bunch of different small buildings, with a couple steps happening in each building. At the start, there were hunks of wood. At the end, there were cricket bats. I couldn't handle a couple of the rooms because of the smell, but I saw most of the process and it was pretty cool. I also saw them making cricket balls and protective equipment. They didn't do much to the balls- they purchased leather balls, lacquered them, and then stamped them. The gloves and leg guards were a bit more interesting, especially since anything sewing related brings out my clothing design brain. Also, they did more with them.
The day before yesterday was supposed to be a double factory visit, with a knitting company first and then Hero Cycles. I only made it through the first visit, what with the alarm that kept going off and the fact that a factory floor is a source of sensory overload in the best case, but the first visit was interesting. I wasn't even the only one who only made it through the first visit- there was a stomach  problem going around, so there was another girl heading back to the hotel as well. That made it a bit less embarrassing: I always feel a bit bad when I can't quite do everything I'd like to be able to do, but at least I wasn't the only one. The group also went dancing that night, which I stayed far away from. Clubs  tend to have flashing lights, which are not my friend, and any form of entertainment that doesn't even start until 8pm is going to go much too late. My roommate didn't  get back until after midnight!
And that is pretty much the story of the last couple days in India. I am very much alive and generally having a good time, but I would really like a break from overwhelming factory floors! That's what the weekend is for, though, and hopefully the fact that my idea of a break is not the typical NT idea of a break wont be too much of an issue.

(Putting this up later Saturday because of internet access issues, will have another post covering what's happened since next time I have internet.)

Friday, May 25, 2012

Black and Blue and Spreading All Over

Trigger Warning: Abuse, Autism Fear Mongering, Violence

That image about autism being 1 in 88 now and asking if we were scared yet needs more addressing than I gave it in my ``Oh, hey, I'm in India!" type post. So, have links to both the original image and the parody, with major trigger warning on the original, also trigger warning on the remainder of my post.

Also a shout-out to IstillFindItSoHard over at wordpress, since I found the links back to the images over at his site. He wrote about the images as well, at  THIS LINK.
 I think it is also good to read. So is all of his stuff that I've read so far. Definite trigger warnings on it, though. He does swear and sometimes uses violent/sexual/both violent and sexual at one (e.g. rape) analogies. If you can, read it anyways. Really.

And now for my addressing the images myself.

Original image:
Seriously. I think that is the most blatant autism fear-mongering I have ever seen. ``I am Autism" did more fear-mongering, but I feel like it was a tiny bit subtler, mainly because they didn't actually ask ``Are you scared yet?" And yes, I just compared this image to that video, yes, I have seen the video, and yes, I think this image is similarly bad.
It begins with the Autism Speaks puzzle piece, though I suspect Autism Speaks didn't actually make this image because it apparently takes from a rather offensive meme that has nothing to do with autism. I'd like to at least THINK (hope) that Autism Speaks isn't quite that stupid. Regardless of who made it, starting off with the Autism Speaks symbol is a BAD start. Adding a single eye with a single tear-drop really doesn't help, for the following reasons:
  1. Now we're making that puzzle piece look even more like a person, and a rather sad one at that. We aren't puzzles, thank you very much.
  2. We're also making the whole thing look like a tragedy. I'm not a tragedy. I'm an autistic person. I'd even go so far as to say that I am a fairly successful autistic person, since I am in college with three majors and writing this post while on a school trip to India.
  3. You only gave this person one eye! We deal with enough of being considered as not-quite-people or as incomplete people without you creating images that subtly or not so subtly reinforce that. It doesn't help. Stop. Now.
And now it asks what's black and blue and spreading all over. That is apparently from a rather offensive meme about child abuse, rape, and murder. Also, black and blue means bruises to most people, even if actual bruises seem to be more greenish or purplish to me. Bruises mean violence. Autism isn't violence. Being autistic does not inherently make a person violent. In fact, autistics are disproportionately victims of abuse, and we are disproportionately not the abusers. If this person wanted to use black and blue to suggest that we are the ones getting bruised, I could have gone with this in the right context and properly explained. But it is neither. Instead, it is in a context that seems designed specifically to promote fear of us.
``And spreading all over" suggests spreading like a disease, which autism DOES NOT DO. Last I checked, you were born autistic or not, and then you stayed that way. It's a bit more complicated than that, what with people who have some autistic traits but don't quite qualify for a diagnosis and all, but if you were born not autistic, you stay that way. You can't catch autism. There is some genetic component, which seems to be pretty big, with the odds of having a second autistic kid after having one being one in five overall according to one source, and higher numbers for boys/if there were two autistic siblings. But... that's not disease-style spread. It also suggests that autistics have been around for quite some time, which completely fails to surprise me. Essentially, saying that autism is spreading all over is factually inaccurate fear-mongering. I don't like factual inaccuracy, and I don't like fear-mongering. I REALLY don't like both at once.

Now here comes the ``Autism is 1 in 88." I don't know where that number comes from, and I don't know if it's true. It wouldn't shock me, as long as you count all autistic spectrum disorders. (The word disorder pisses me off, but that's what they're called...) This is probably the most subtle sentence here, as far as the fear-mongering goes. It's also the only one with any possible basis in facts. I think it says something when the least scary sentence is the one with the most basis in fact, and even the basis of that sentence is unsure. It's more a how they say it than a what they say in this case.

The kicker, of course, is ``Are you scared yet?" And yes, I am scared. I am scared of people who think violence against autistics is OK. I am scared of people who think this sort of fear-mongering is OK. I am also scared of what the creator of this image would do if he/she were to live with an actual autistic. Not of what the creator would do to his.herself, but of what he/she might do to the autistic, who doesn't deserve it. I am not scared of autism. I am scared of autism fear-mongering. There is a difference.

And now for the parody:

What looks like a bleeding chest wound has been added to the puzzle piece with a single tear coming from a single eye. That actually makes sense. The person now has an obvious reason to be crying, and I'd say it's a pretty good one! A chest wound is not fun. Also, autism fear-mongering leads to violence against autistics, so a wound makes sense.

If the connection to the offensive jokes is true, then ``what's black and blue and spreading all over" still isn't great, but now the implied violence of bruises is happening in a context where it... actually happens. Also, if we're parodying something, we should probably leave enough of it there that a reader can tell that it's a parody. So this works.

And of course, the answer:
Autism Scaremongering.
It's not the end of the world!
Autism Acceptance 2012.

Autism Scaremongering is definitely spreading, and it leads to violence. I think they should have said ``Autism isn't the end of the world" instead of ``It's not the end of the world" since the ``it" could be mistakenly interpreted as Autism Scaremongering, which has led to the end of the personal worlds of several autistics. Otherwise, I like this message. Autism Acceptance I'm definitely all for. Autism fear/scaremongering I'm definitely all against. So yeah, nice parody overall.

Thursday, May 24, 2012

That's not a tantrum. That's a meltdown.

Image Text:


``Want" Directed
Goal/Control driven
Audience to perform
Checks engagement
Protective mechanisms
Resolves if goal is accomplished
Age: 1-5 years

Autistic Meltdown

Reactive mechanism
Continues without attention
Safety may be compromised
Not goal dependent
May require assistance to regain control.
Age: through adulthood

See, when I get overwhelmed, curl up in a corner, cry, shake, and pretty much don't acknowledge your existence/want you to leave me alone, and if you do leave me alone, I keep crying and shaking just as much as when you stay with me, that's not a tantrum. That's a meltdown.
When I'm overtired, coming down off sensory overload, have been triggered by song lyrics, and then find out that I wont be getting food until after the time when I would normally want to be asleep, so I curl up the corner of the hotel room and start to cry, choosing the corner I did as the one where I figured my roommate would be the LEAST likely to notice, that's not a tantrum. That's not culture shock either- none of those had anything to do with the culture of India. That's a meltdown.
Having gone to the professor after getting myself back under control and asking for help doesn't retroactively turn the meltdown into a tantrum. If it were a tantrum, I'd have had it in front of whoever I wanted help from and continued until I got it. Instead, I knew it was coming, got myself OUT, had it as privately as I could, and then went to deal with the causes once I was rational again. I have no illusions that I'm rational during a meltdown.
As far as dangerous goes, some of us have dangerous meltdowns, and some of us don't. The worst you're going to get out of me is a rant about whatever caused the meltdown spluttered out between the tears and the gasps. (Normal crying has long since stopped giving me breathing problems, but meltdowns still make my breathing a little weird. Not dangerous weird, but I am out of breath.) I could also be rocking/shaking, which also aren't dangerous.
And fixing the problem won't end the meltdown. It takes away the cause, but I'm still melted down, and I still need to get myself back under control. It's not an immediate off switch. (Note that I'm often well away from the trigger by the time I actually melt down. I'm pretty good at delaying meltdowns, but if it's coming, it's coming.)

Wednesday, May 23, 2012

My Open Letter to Playboy

Trigger Warning: Discussions of eugenics, abuse, murder

Here it be. Feel free to comment with suggestions before I actually send it. You've probably got about a week.

To Everyone Involved at Playboy Magazine;
Since I am female, you might interpret my none-to-happy letter to mean that I am against your magazine in general. Don't. I have no moral issue with your magazine. I just take issue with you paying Jenny McCarthy to pose for you, knowing that her fee will be going to support autism research that autistics do not favor, and in fact, tend to vehemently oppose. (If someone were to negotiate the same deal, but donating their fee to the Autistic Self Advocacy Network or another autism advocacy group that actually helps autistics, I would be applauding you for making the deal. I might even write a thank-you note to you guys, publicly. Just... not for her. Not for her idea of autism research, which has much to do with eugenics, and which can arguably look like attempted genocide using the formal criteria.)
I know you'll be getting more notes like mine. Don't ignore them for being too angrily worded. That would make you just as bad as everyone else who makes arguments from tone (against people whose disabilities mess with communication, no less!) You don't get to keep hurting people just because they told you to stop in a mean way. You have to stop as soon as they tell you to stop hurting them, or as soon as you are aware that you are hurting them, whichever comes first. And we're telling you now. Giving Jenny McCarthy a fee to be donated to autism research for posing for your magazine will hurt autistics. Don't do it.
You probably want to know why I think this will hurt autistics, that or you've already dumped my letter in the garbage or closed the page. So:
  1. She's convinced that vaccines gave her son autism. Vaccine injuries exist, but that's not the same as autism, and vaccine injury is extremely rare. Her son is autistic (or possibly has a disorder commonly misdiagnosed as autism but is also NOT caused by vaccines), not vaccine injured. She wants to get people to stop vaccinating. Vaccinations are how we don't have people getting polio and smallpox, by the way. It's why we don't have mumps or measles. It's why many of the Americans of my generation will never get chicken pox. It's why the flu doesn't take as many of the young and the old as it used to. And it DOES NOT CAUSE AUTISM. Giving money to her brand of autism research is almost certainly going to include giving money to trying to find the non-existent link between vaccines and autism and scaring more parents out of vaccinating their kids. This one actually hurts all people, not just autistics. So yes, this affects you. Even if you're Ok with hurting autistics, which you shouldn't be, don't be dumb enough to hurt yourself.
  2. She wants to find a pre-natal test for autism, and then scare mothers into aborting their autistic kids before they are born. I'm actually pro-choice to the extent that I can't fight to make that illegal (I don't mess with why you can or can't abort because that's a slippery slope) but it smells formally of genocide and obviously of eugenic principles. Each individual parent who makes that decision? No, not exactly eugenics. But it happening at the societal level, perhaps at the 90% that has happened for Down's babies? That would be eugenics. Remember eugenics? That's where forced sterilizations came from. Not cool.
  3. She incites murder. She really does. Do you want to be known for giving money to someone who has incited the murder of disabled children? Going on TV and telling people about how we are tragedies and supporting treatments that don't do anything about the fact that the person is autistic but can (and do) kill the patients is inciting people to kill us.
  4. She has claimed that there are no autistic adults. Apparently that means I don't exist, nor do the writers of most of the blogs I read. Huh. They did a pretty good job at writing stuff for people who don't exist. Some of them have done pretty good jobs of standing in front of me and having conversations for people who don't exist. They've done a pretty good job of protesting Autism Speaks for people who don't exist. I'd say I've done a pretty good job accumulating passport stamps and tutoring math for someone who doesn't exist. But seriously. People don't grow out of being autistic, so that's one of the stupidest things I've ever heard. Maybe she's suggesting that our parents and caretakers kill us before we reach adulthood, which would be incitement to murder again. Maybe she is suggesting that we are never truly adults. (Not sorry. I'm an adult. I've held a job fixing computers, a job as a classroom assistant, a job as a tutor, and a job as a grader, and I've never been fired or layed off. I'm in college with three majors. I'm registered to vote. I can cook for myself. I'm pretty competent, actually, and I am over 18.) Do you want to support someone who says stupid things that piss people off? Why?
  5. She thinks we need a cure. If someone autistic told me they wanted a cure, I'd find out why. If all the reasons didn't actually have anything to do with being autistic, I'd go after society, not cure the person of who they were. And... oh, wait. My autism-related difficulties fall into two categories. The ``Oh, big whoop. I don't really care." category and the ``Uh, that's a problem with your reaction, not with my being autistic. Go away." category. I wouldn't make someone who grew up neurotypical autistic, but I wouldn't let anyone make me neurotypical either. I've heard the theory that if there hadn't been autistics floating around all along, we'd still be living in caves. I could believe it. Do you think you would have been the first to squeeze the udder of a cow and drink whatever came out? Do you think you would have been the first to stick your meat in a fire and see what happened, not knowing if it would be edible after? Do you think you would have been the first to make a fire inside a hut or a cave? I doubt it. But I might have. I'd put money on it that the first people to do those things had autistic traits if I thought there was a way to resolve that bet. So go thank an autistic, and you can start by not hurting us or trying to make sure there aren't any more of us or cure us. That is just a start, though.
So, now that I've made it quite clear that there are actual reasons that you should not support her brand of autism research, kindly follow logic and don't support her brand of autism research.
Alyssa **** (autistic triple major, researcher in self assembly, and author of Yes, That Too.)

And That Was Not Someone Who Got The Point

So, Liz Szabo from USA Today, the same person who ran the #autismchat better than a month and a half ago, published another autism story today. This post is what I would like to say to her.

When you made your comment on my blog post about being upset with the autism chat, it sounded like you might become an actual ally, not one of the people who claims to be an ally but doesn't actually listen to us, the people who know the most about living autistic by way of having done so our entire lives. Maybe my expectations were high because I have not been disappointed to watch someone I thought got the point turn out to have completely missed the point enough times. Maybe I thought the fact that autistics can and do have their (and our) own opinions on autism and how to handle autism, which mainstream news all-too-often ignores, was clearer than it really was. Or maybe you forgot everything you seemed to have learned that day. Maybe you didn't even care and your comment was fluff to appease an angry reader. I don't know what to think.
I'd like to think that you honestly believed that talking to a researcher who was also the parent of an autistic child was bringing autistic voices in. But... considering the number of comments about how ONLY actual autistics speak with autistic voices, and everyone else can speak with the voice of an ally or not, I have trouble doing so. I think that the idea of talking to autistic people involved in autism research or to autistic experts on autism slipped your mind because you forgot that we do not go away when we grow up, that autistic adults exist in every career (yes, autistic doctors and teachers and scientists all exist. I'm on the way towards being an autistic something in the gray area between engineer and scientist.) Finding an autistic who does autism research wouldn't be that hard. It probably wouldn't be research into causes and cures, though, since that actually autistic know that the most good can be done by funding supports that work and doing research into finding therapies and supports that will help us better. We know how many autistics would reject a cure if offered. (Hint: That's a lot of us. Our families, I suspect, have a much higher rate of wanting us ``cured" than we do, or else there wouldn't be much of any research in that area.) We know that figuring out the causes doesn't help anyone who is autistic NOW.
So, what can you do? You're fully capable of ignoring me. You could keep writing stories about researchers and families like most of the other mainstream media writers do, not asking the autistic siblings and children how they see their own lives. You could keep writing about autism only as it pertains to children, continuing to imply that autism is a children's condition and that autistic adults like myself do not exist. I sincerely hope that's not what you do. It's not what I thought you would do when you wrote your comment on my blog before, and I'd like it if you could make me think you were different again.
This time it will be harder. A comment on my blog wont be enough. You would have to:
1) Whenever you do a piece on issues facing autistics, get the information on what the problem is and why it's a problem from the autistic people facing the issue. Conduct interviews by email instead of in person if you have to, since some of us type but do not speak.
2) When you identify someone you interviewed/quoted as being autistic, ask them how they identify. It might be ``autistic" or ``autie" or ``aspie" or ``person with autism" or ``person with aspergers" or any number of things. Whatever that person says, go with it. Self-identification is part of self-determination, and yes, many of us DO care. (I am autistic. I am an autistic person. I am NOT a person with autism, and I don't really care that the way I identify isn't considered politically correct. Put it in the article that this is the way the person said he/she wanted to be described if you have to.)
3) You can talk about research about autism of any kind that is happening. You ARE a reporter, after all. But you don't get to say that autistics want something if you only have quotes of parents and siblings saying they want it.
4) We aren't tragedies when clearly disabled, and we aren't inspirational stories of overcoming/living with disabilities when we live our lives. Don't paint our stories in either of those shades.
5) Do not take us out of context. If you aren't sure about the context, ask.
6) Don't fear-monger about autism. (If the story would make a parent terrified of the 1 in 88 chance of autistic spectrum disorders, it's probably fear-mongering. If it makes the parent think it's difficult, but still rewarding, you're probably in better shape. If you call autism a disease or talk about it as an epidemic, it's definitely fear-mongering.)
7) Remember that autistic ADULTS exist, and don't write exclusively about the kids. I know that kids are cute and cuddly, but it does a major disservice to autistics when people ignore the adults.

That should make a good start on how to write about autism in ways that wont disappoint and/or anger the actually autistic. You will, of course, still have autistics annoyed at you at times. (Some of us are militantly identity first for all cases, and some are militantly person-first for all cases, for example. Get one autistic and one person with autism in the same article, and both of those camps will be angry.) But that's OK. Autistics get angry with each other too, sometimes. What we try not to do, though, is ignore the points of view that autistics have, even when we vehemently disagree with them. We try not to let awareness of what it's like to have an autistic family member be at the expense of hearing from the people who are autistic themselves.