Representation, Freedom of Speech, and Patterns

Warning: suicide (mostly in fiction but with discussion of real life effects)

The example of the moment is Me Before You. It's yet another example of a movie where the disabled person is cured, dies, or is sent away (often institutionalized, see Rain Man) and this is part of a "happy" ending. In this case, we've got suicide because the quadriplegic guy doesn't want to be a burden on his girlfriend, and this is noble of him somehow.

(Seriously why is it noble for a disabled person to kill themself, but nondisabled people have so much to live for?)

I say example of the moment because there are a lot of movies where the disabled person dies and this is apparently a good thing, because they aren't suffering anymore. And the people around them? Despite any insistence they may have given at the time that the disabled person wasn't a burden... they are now free to do all kinds of things they would never have done before and apparently the person totally is being shown as having been a burden.

As in, story arcs of this type are a pattern.

When we point this out, we get told how this is "just a movie." (False, by the way: it's one movie in a pattern of fiction killing off its disabled characters. Not isolated.) We get told that the directors are free to make movies about whatever they want. (True. By the same token, we're free to tell the world that this type of arc is overdone, and that it reveals some problems when suicide is a happy ending...)

These are also patterns.

The free speech pattern applies to a whole lot of things. A person says something that is punching down. It gets pointed out. "But freedom of speech!" Yes. Freedom of speech. As Randall Munroe shared (but did not come up with -- he's not sure who did,) citing free speech is conceding that your best defense of what you just said is that it's not literally illegal to say it. Plus freedom of speech also means we can share our opinion that your speech was pretty bad.

People generally don't like having it pointed out that criticism is an expression of free speech. Again, patterns.

And here's the thing: the prevalence of fictional arcs of this type, where the disabled character dies (and ones where the character is cured, and the ones where the character is sent away) are super common. If disabled activists were actually censoring this sort of story, don't you think there'd be fewer of them around?

And yes, folks responding to "so this really common trope is pretty terrible" with cries of censorship, even though the prevalence of the trope suggests that it is clearly not being censored, is also a pattern.

Response on Stem Cell Therapy

This is a response to a question I was asked. Here's the question.

Dear Alyssa, Greetings from India I found your blog while I was researching about special schools in China. I enjoyed reading your posts. I wanted to know your opinion on stem cell therapy for autistic individuals. What are your thoughts? Do you support it? Do you think its useful, not just in terms of autism but also for other neurological disorders. I would love to know your perspective. Love, Avantika

The short answer is that I don't support stem therapy "for autism"  (it makes no sense) but I do for people with conditions where stem cell therapy makes sense (some heart stuff, liver stuff, sometimes Crohns) who are also autistic.

There's a few different opinions that are all part of the long answer.

• There's my opinion on stem cell therapy in general.
• There's science side, is stem cell therapy even relevant to anything about autism?
• There's my opinion on biomedical treatment of any kind "for autism."
• There's my opinion on stem cell therapy for other reasons on people who happen to be autistic.

Anyways.

Stem Cell Therapy in General

My opinion on stem cell therapy in general is that it's still pretty experimental, but there are things it's been shown to work at least some with. It's used for some liver stuff, some heart stuff, some neurodegenerative stuff, osteoathritis, and Crohns. What all these things have in common, so far as I can tell, is that adding new cells that work like patients and doctors expect them to work helps with whatever the patient doesn't want their body doing. 

Some people have ethical issues with stem cell research and therapy for various reasons. As a sciency person, I know that most of those concerns don't even apply in quite a few stem cell areas (adult stem cell lines and umbilical lines have nothing to do with abortion, fetal lines coming from "spare" fertilized eggs after in vitro could become people if implanted but it's also not abortion, and I'm pro-choice anyways.) So I think stem cell research and resulting therapies are really cool, as long as they 1) are working towards a goal that the person being treated supports (not a parent, not a doctor, not a caretaker, the person being treated) and 2) there's scientific reason to believe that it can (help) accomplish the goal. The amount of evidence needed is less for treatments that the person being treated knows are experimental, like as part of a study, and more for stuff that we're saying is known to work. Which level of evidence a person being treated wants before they agree to it (and there has to be consent here) is up to the person.

Relevance to Autism

Going back to what the things being treated have in common, these are conditions where adding new, healthy cells can help with whatever the problem is. Autism does not fit the bill, even a little bit. Even if you hold with the idea that autism is somehow terrible and reducing "symptoms of autism" is the holy grail of treatment, the relevance of stem cell therapies to autism itself is doubtful. Some evidence suggests that we've got extra brain cells and connections in comparison to neurotypical expectations, among other things. 

This isn't a statement about stem cell therapy for autistic people who could benefit for other reasons, like if an autistic person also had Crohns or osteoathritis or any of the other stuff that's getting successfully treated with stem cell therapy, the question would be about relevance to that condition rather than autism.

But no, stem cell therapy is not relevant to autism.

Biomedical Stuff for Autism

Biomedical treatments "for autism" are generally pretty confused about what they're supposed to be treating, how it's supposed to work, and everything in between. Stem cells "for autism" don't look like an exception here. 

At best, such treatments are aimed at reducing discomfort that we have for other reasons (like the fact that autism and epilepsy can occur together, autism and autoimmune stuff can occur together, just by sheer probabilities, unless autism and condition X are not independent (having one affects the chance of having the other) they will occur together for about 1% of people with condition X.) Those treatments would actually help with the condition they're properly meant for, and make autistic people who have that other condition more comfortable. Often, our being in less distress is wrongly taken to mean that we are less autistic, and so people decide that this treatment now reduces "autism." For an autistic person who also has any of the stuff that stem cell therapies are actually good for? The relevant form of stem cell therapy could go here.

At worst, such treatments are actively abusive and have no reason to work. Bleach enemas, chelation, chemical castration, and a lot of other "biomedical" and "alt med" things people do "for autism" go here. If the autistic person in question doesn't have anything for which stem cell therapies are actually relevant, then stem cell therapy may well go here.

Regardless, treatments "for autism" are also rooted in the idea that autism is wrong or lesser, while neurotypicality (or being able to fake it) is ideal. That's directly opposed to the neurodiversity paradigm, so the idea of any treatment "for autism" is not high on my list of good things. 

Rather than trying to make Autistic people be "less autistic," I support giving us the treatment and tools that help us live better lives as Autistic people. If we've got any stuff going on that's causing us problems (I've got asthma, for example,) then treating those problems is just as good an idea for Autistic people as it is for those lacking autism. People tend to prefer feeling good to feeling sick, after all. The problem is when people conflate "feeling better from other stuff" with "less autistic." We're not actually less autistic, and less autistic isn't actually a good goal anyways.

I've talked a bit about what education that's based in teaching us to live well as autistic people could look like, but it's so unusual that finding anything like that is tough. That's also not particularly the point of this answer, but if you're interested, here are a few:

• But AAC Increases Speech!'
• Growing up into an Autistic adult
• Education and Services, by Autistic people, for Autistic people
• More than two options

Stem Cell Therapy (when the person is also Autistic)

I don't see how this is different from stem cell therapy when the person isn't autistic. If someone has a condition where stem cell therapy is actually relevant, them being autistic isn't a counter-indicator.

Poem Time! (4 poems)

It's April. It's NaPoWriMo. I'm trying not to let my poem posting fall quite as far behind as it did last year. So here's 4. Warning for cures/death/institutionalization in The Ends, death in Changes, and that none of them are light.


Untitled

Disabled AND proud.
Disabled AND awesome.
Disabled AND positive.
But, but, but, implying something's strange.
And, and, and, no contradictions here.
No paradoxes of disability and winning,
Here even when the plot doesn't demand.



The Ends

Cure, Death, Institutionalization.
These our our fates in the stories we sideline.
Our rare headlines must be cured.
Cure, Death, Institutionalization.
Is this truly all we are given?
Then we must take,
The worst they can do is status quo.



Shoes (Thank Neurodivergent K for the idea.)

Walk in their shoes, their shoes, their shoes.
The shoes that pinch and rub and blister,
Not built for me, or for those like me.
There are no shoes made for us.
If I can't have my own, there will be no shoes.
No assimilation to lives not my own.
Barefoot revolution.



Changes

One leaflet more or less,
Normal or death to my luck.
One wiring same or different,
Mythical goals I must reject.

The Non-Disabled Friend

Warning: Discussions of ABA, "recovery" criteria

Neurodivergent K got me thinking about this with her post about indistinguishability from one's peers. (Other conversations with her may also be relevant. Probably are.)
And. Well. At least one non-disabled friend.
That's one of the things listed for indistinguishability from one's peers. Placement in general education (yup, I had that always) and at least one non-disabled friend (pretty sure I always had at least one.)
Yeah, I've met those two criteria since basically forever. I was in typical preschool starting when I was 3, typical classes all through, sometimes honors and AP classes. I'm the only person from my year and school who managed to pass the AP exams for Chemistry, Biology, and both parts of Physics C. [Physics C ran my junior year, but not my senior year. And I was the only junior in it. So I can also say only while just talking about Physics C. Haha.] That's actually a lot more than just being in general education.
I got bullied a ton, too, but I always had at least one friend. Sometimes only one, but there was one.
So according to this idea, I'd be indistinguishable from my peers, right?
Hahahahahaha noooooooo.
I stuck out like a sore thumb. Still do. The 4th grader in the math club? Me. The kid who wears the same dress to every math competition from 7th grade through college? Also me. That one girl who joins the (boys) Frisbee team? Yup, you guessed it. Me. I even joined tenor bass choir. This is not a joke. One of the classes I was in that I was ignoring prerequisites for was tenor bass choir. That's the boys one, by the way. Which is kind of the prerequisite I was ignoring. [I broke at least one class prerequisite every year in high school. Usually because of having skipped math or science classes.] I wore homemade skirts and dresses to school most days. In fact, I can tell you exactly how many days in my junior year of high school I did not wear a homemade skirt, shirt, or dress: 16. That's math meet days plus one. I was absent more days of high school than I wore pants or shorts to school. I made chainmail in class for two years. When I told my high school friends I'd been diagnosed autistic? They were surprised... that I hadn't been diagnosed before. Like I said, I stuck out like a sore thumb. I was pretty blatantly and obviously distinguishable.
But I had nondisabled friends! By high school, they was even plural!
Ok... so maybe they weren't so "typical." One had Marfan's. One had an ADHD diagnosis from when he was younger (he thinks that's inaccurate) and his mother was convinced he had Asperger's (which he also thinks is inaccurate.) I don't think either of those things is the answer, but I also don't think he's neurotypical. Another had NvLD. One was never diagnosed with anything, but I would put money on not neurotypical. I think the last of my close friends from the lunch table is nondisabled. I think. But they were all in general education, and that's the same thing, right? Or the one person who might actually be nondisabled counts for all of us.
Yeah, I think the whole thing is a pile of nonsense, and also that I was pretty easily distinguishable. It's not like the entire high school knew who I was or anything /sarcasm.

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.

How old is your child?

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

"How old is your child?"

Did you even read my page before you sent me your things? I have to say, I doubt it. You and your curebie spam, telling me that you can hugely improve a nonverbal boy. I thought that telling you I didn't trust ABA but that if you were talking AAC, I was listening might give you an idea. I thought the fact that I capitalized Autistic and used it as a noun might tell you something. "Yes, That Too is an Autistic blogging about anything. Anything seems to be mostly related to autism/disability. Updated daily at midnight EST." Does this not suggest, perhaps, that I might not want your miracle cure? Does this not suggest, perhaps, that I might think your miracle more likely abusive than not? Miracle curebies, I know what you think of neurodiversity advocates. I am one, hear me roar. Or... hear me laugh at you, really. 

"How old is your child?"

Is that really the question you want to ask? Did you really just compare autism to cancer? Do my eyes deceive me? No, I think you did, and I think you denied it, and I think you're condescending too.

"How old is your child?"

I think you need to read my tagline, and perhaps not assume that being an Autistic is the new synonym for Autism Mom. And I think you need to not try telling me that it is in the diet, this miracle that fixes autism. It's not. It never was a. Diets don't rewire brains. You have no college degree, no qualifications, you said as much, but you say you have the solution, and...

"How old is your child?"

I am 20. I am an adult. I am no child, I have no child. There are no children here for you to make your claim for, and you will not see them when there are. 

Your side of the tracks, as you call it, is not better. It is one where children are taught they are broken and adults silenced if they try to disagree. It is one where I could not function the way I do, and where people burn the,selves out trying to prove themselves not to be who they are.

"How old is your child?"


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

Do YOU Have a Child with Autism?

Nope.
Probably never will.
I probably will have an Autistic child, though.
If you don't think there's a difference, I've got a page about not calling me a person with autism because I'm Autistic, and it links to a pile of posts on the subject. I think seven of them are mine? Yeah...
But that's not the point.
The point is, parents, I know many of you think that "Do YOU have a child with autism?" is a relevant question to ask in conversations about autism, and that an answer of no means that the person doesn't have anything relevant to say.
And I saw a thread in which a parent repeatedly asked an Autistic person (reasonably well known as an Autistic blogger and activist, has a chapter in a book about self-advocacy, it's NOT HARD to Google her and see that she is Autistic) if they had a child with autism in a conversation about vaccines.
And this parent ignored all the Autistic adults, including the Autistic parents of Autistic kids. Apparently mentioning that they were themselves Autistic, that they had Autistic kids with varying vaccination history, that yes, they do, in fact, know both what it is like to have an Autistic child and to be an Autistic child and that they still think it is time to quit it with blaming and fixing that which isn't broken doesn't go over well. Apparently it is just being divisive, but claiming that vaccines cause autism without sources on a site that is science-based isn't divisive or stirring up trouble at all?
Apparently it is all about the poor parents of the children with autism, and autism is something to be overcome, and these parents love their kids but hate autism. And apparently these parents are basing their identity around making martyrs of themselves, with the so-called enemy... their child's neurology, which is somehow separable from their child.
No.
Autism is about the Autistic person, not about the parents or the siblings or the caretakers. If you claim that being the parent of a "child with autism" means you know more than the average layperson, I'm inclined to give that to you. You at least have some idea what your child needs, hopefully. (Or you know to to try to make your kid act "normal," which is knowledge but is also a really horrible thing to do.)
If you claim that it makes you know more than an Autistic person?
I will laugh you right out the door.
You want to know more about autism (in general) than an Autistic person? You're gonna need to do a lot of reading and a lot of talking to Autistic people, because strange as it might sound, we are the experts in living Autistic. And once you've done that? You'll still only know more about autism in general, not about any given Autistic person's own experience, and even that, you won't have over the Autistics who did the same.
If you claim that your suffering is in any way relevant to "who knows more about autism?" I will laugh you right out the door, because focusing on yourself and your suffering and your martyrdom is not how you learn about anything that isn't you. Guess what? Autism isn't you. It's a word for your childs brain meant to separate them from their neurology, since it's a noun and it's not a type of person.
Autistics Speak, time to listen?

There is a Difference

Trigger Warning: Ableism, "cure" talk, reversing symptoms of autism/recovery

We should be aiming to empower both individuals with autism with the skills to cope in the world and non-autistic individuals to accommodate autistic differences, not to reverse the symptoms of autism.

That was the final sentence in ASAN's response to the study about some children seeming to "recover" from autism. (I presume they are quoting it from one of their referenced papers, since it's using person-first language and ASAN doesn't usually do that, but I'm honestly not checking that right now.)
Someone asked if there was any difference from outside besides just "semantics."
I could get into how semantics is word choices and word choices matter, but I've talked about words mattering. I've talked seven times about Autistic versus With Autism, and I've got another you haven't seen about capitalizing the A in Autistic. Words mean things. Semantics actually matter.
But that's not the point.

The point is that there are huge concrete differences between empowering Autistic people with coping skills and trying to reverse symptoms or traits of autism.

When you are trying to reverse the symptoms, oral speech at all times is key, and confiscating AAC devices in an attempt to elicit speech is acceptable on the off chance that it might work. (It won't. In fact, AAC devices seem to help people learn oral speech.)
When you are trying to provide coping strategies, any sort of AAC is a huge gain, and oral speech, while certainly a useful skill, does not have to be the be-all end-all of communication. Typing is fine. PECS is fine. A Dynavox is fine. Proloquo2Go is fine. An Autistic adult who can usually speak typing when under stress is a coping mechanism, not a behavior to eliminate.

When you are trying to reverse the symptoms of autism, preventing stimming is a goal. The events of "Quiet Hands" may seem acceptable. (They aren't, and they never were.)
When you are trying to help a person learn coping strategies, you suggest fidget toys they may be able to use in class. You might even let them sew in class (that's what some teachers did for me.)

When you are trying to reverse the symptoms of autism, forcing a person to make eye contact is a good idea.
When you are trying to help a person learn coping mechanisms, you mention tricks for "faking" eye contact (nose, forehead) if eye contact even comes up. It might not, because if eye contact is something that we need to think about in order to do it, it's pretty much a thing that's done for other people's benefit, not ours.

When you are trying to reverse the symptoms, bullying about Autistic traits is just another motivator to "fix" this person.
When you are trying to provide coping strategies, it is sign that something is wrong... in how the bullies are acting. Bullying is something to be stopped, and the harm is can and does cause is recognized.

When you are trying to reverse the symptoms, you might care about the cause. The cause might tell you the cure.
When you are trying to provide coping mechanisms? Why an Autistic person is Autistic really doesn't matter. It's not going to help us cope, so why do we care? [Besides curiosity, I mean. Which as a sciency person... yeah curiosity does seem pretty legit to me, but I can get that it's not relevant to this.]

When you are trying to reverse the symptoms, social skills courses that teach us to be silent, that teach us to engage but not to disengage, are considered OK because it makes us act more normal.
When you are trying to help us learn to cope, a social skills course would look vastly different, in ways that could get posts all to themselves. Suffice it to say that engaging and disengaging, following and setting boundaries, accepting and rejecting invitations all need to be covered. And that a lot of it would actually be teaching the abled kids how to be decent, not teaching us how to pass.

There is a difference. From inside, it is between learning to work with your brain as opposed to working to defeat your brain and pretend it is not wired the way that it is. From outside, it is between trying to make a person appear more neurotypical and trying to help a person work with the skills they have and the skills they can learn as well as they can. If you don't get that difference, if you think it is simply semantics, you may well be doing the first and mistaking it for the second. The first, trying to reverse the symptoms? It's kind of the default expectation of most treatment/therapy/education right now.

Be careful, because there is a difference. It is, at a very real and visceral level, the difference between holding a person's hands down in tacky glue as they cry and helping them find a way to stim and do other things at the same time. Or even realizing that we can stim and learn at the same time, that "table-ready" and "ready to learn" are not the same, that neither is prerequisite to the other.

Flu Vaccine

Trigger Warning: Needles/blood tests in the three paragraphs following the bolded line.
The rest should be OK.
Sarcasm alert on basically the whole post.

I got two vaccines today- the flu and something else. I don't actually remember what the other one was, but it's one of those ten-ish year ones. It hurts, too. Ah well, vaccination is useful. I quite like this "not getting the flu or pneumonia" thing, really.
And goodness, will I be pissed if I wake up neurotypical tomorrow.
My thing with vaccinations, or really anything involving a needle, is that I can't watch the actual injection. Once it's in, I can look and it's fine, but I can't watch them put it in. I know, it's kind of weird. I really only know about the ability to look after because of blood draws for labs.
Yes, this is apparently TMI about Alyssa's doctors visit fears and oddnesses day, except for the first bit. Sorry, everyone.
The main point of this post was the joke about my being pissed if I wake up neurotypical tomorrow, so don't worry if you don't want to keep reading past that.
I guess it leads into a vaccines don't cause autism thing, but it's 11:30pm, and I'm tired. I had a thing queued that I could have used, but I wanted to make that joke. Today is not a quality day.
So.
Vaccines didn't make me Autistic. Genetics did. Like, a huge portion of my mother's side of the family, right up through a great-grandmother and her sister were/are autistic. If that's not genetics, what is?
But people seem to think that genetically neurotypical people somehow get turned autistic by vaccines.
If vaccines can re-wire brains, I guess it could rewire someone who is genetically autistic to be neurotypical instead.
And if it did that, I would be pissed.
Thankfully, vaccines don't actually rewire brains in either direction.
...
Or do they?
I'll let you know if my sensory processing problems suddenly vanish and I suddenly stop caring about any of my Autistic obsessions and don't get new ones and I don't mind eye contact instead of just being able to fake it well enough no one else can tell and I stop stimming. Yeah, not happening, and I'd be pissed if it did. Unless they could get rid of just the sensory processing issues and leave everything that's because autism. I'm not convinced that it's possible, but it can't make much less sense than a vaccine re-wiring my brain, right?
Of course not.
Not much makes less sense than a vaccine giving me autism.

Some More Notecards

Trigger Warning: Discussions of ineffective and dangerous autism "treatments"

So, here's notecards from two sources where the person is explaining why their treatments work. I have included "Science Check" sections for some statements as a note to myself that I should check the scientific accuracy of certain statements (or source the disproof, since some of them I know to be false.)

From the Geier's patent application filed in 2006:

Geier, Mark R., Geier, David A. (2006). US Patent Application 20060058241. US Patent and Trademark Office.

• The first patent application by the Geiers for using a lutenizing hormone to treat autism, filed in 2005 and published in 2006, listed itself as a treatment for "disorders having a component of mercury toxicity" and is a method of lowering mercury by giving both a chelating agent and the hormone, generally in the form of Lupron.
• This application listed autism, autism spectrum disorders, attention deficit disorder, attention deficit hyperactivity disorder, mental retardation, Asperger's syndrome, childhood psychoses, stammering, stuttering, tics, repetitive movements, eating disorders, sleep disorders, enuresis, developmental language disorders, developmental speech disorders, developmental delay, Alzheimer's disease, diabetes, heart disease, obesity, amyotrophic lateral sclerosis, nephritic syndrome, renal failure, asthma, systemic lupus, autoimmune thyroiditis, rheumatoid arthritis, arthritis, vasculities, myelitis, glomerulonephritis, optic neuritis, infantile cerebral palsy, epilepsy, migraine, toxic encephalopathy, cerebral degenerations, anterior horn cell disease, spinocerebellar disease, extrapyramidal disease and myopathy as possible disorders to be treated with this method, though the preference is to treat a male child with both autistic spectrum and precocious puberty diagnoses or a male child with both autistic spectrum and mercury toxicity diagnoses.
  
  • Science Check: Relation of mercury to ALL THE THINGS.
    
• The treatment can also include an antiandrogenic hormone, or, in the case of female patients, estrogen and/or an antiandrogenic hormone
  
• Also claimed in this first application is a method of determining if a child is susceptible to autism using testosterone levels.
  
• The Geiers claim that the mercury contained within the thimoserol in vaccines may be binding to testosterone in autistic subjects, citing both a study in which mercury chloride, an inorganic mercury salt, bound to testosterone in hot benzene and their own paper which claims autism rates are significantly higher in children who received vaccines containing thimoserol than in those who received thimoserol-free vaccines.
  
  • Science Check:
    
    • Thimoserol/autism link (well, lack of link...)
      
    • Mercury/autism link in general (also lack)
      
    • Differences in reactions in human body vs other conditions
      

From Kerri Rivera's presentation about MMS at the 2012 Autism One Conference:

Rivera, Kerri (2012, May). 38 Children Recovered in 20 Months with MMS [PowerPoint Slides]. Paper Presented at Autism One/Generation Rescue Conference, The Westin Hotel, Lombard, IL. Retrieved from http://www.autismone.org/sites/default/files/rivera.pdf.

• MMS is a mixture of citric acid and sodium chlorite which releases chlorine dioxide, an oxidizer used for municipal water purification.
  
• Kerri uses Schopenhauer's quote about the stages of truth as evidence for MMS.
  
• Chlorine dioxide is a powerful oxidizer which can accept five electrons from other substances, and it has been used against fungus and bacteria as well as disinfecting municipal water.
  
• Rivera claims that human tissue will not be harmed by chlorine dioxide because it has a lower voltage (.95) than oxygen (1.28), but that pathogens have no resistance due to the oxidation potential.
  
  • Science checks on:
    
    • oxidation potential actually being measured in volts
      
    • chlorine dioxide and oxygen having the claimed potentials
      
• the fact that oxygen can't hurt tissue (since I know concentrated oxygen actually can)
  
• The fact that it is used to disinfect hospital floors, and slaughterhouses is used as evidence of efficiacy against pathogens.
  
• Rivera claims that "It neutralizes by removing the electron shells of heavy metal compounds (i.e. ethyl/methyl mercury) destroying the molecules. They are therefore returned to their natural states, so the body is then able to remove them."
  
  • Science Checks on:
    
    • ClO2 reactions with ethyl/methyl mercury
      
    • toxicity of products of these reactions
      
• MMS does not claim to be a stand-alone treatment in autism recovery (cure,) but rather part of a treatment program.
  
• Rivera claims that autism is made from pathogens including food allergies, inflammation, heavy metals, candida, parasites, bacteria, and viruses, and that MMS kills the pathogens and neutralizes the heavy metals. She also claims that MMS reduces inflammation.
  
  • Science Checks:
    
    • Autism linked/not linked to these things.
      
    • Most of these things not being pathogens anyways.
      
• A restricted diet is required for the use of MMS- antioxidants, juice, citrus fruit, and pycnogenol are to be avoided, for example, and it is recommended that 72 hours be taken off before blood tests.
  
• Kerri notes that a fever sometimes happens and that if it does, this is a good thing and shows that the MMS is working.
  
• Rivera is from the AutismO2 clinic, a clinic for hyperbaric treatments for autism (which will also be discussed.)
  

Wish for Autism to not Exist? That's a Problem

I saw a post on Tumblr stating that you should reblog if you wish autism did not exist, and it basically said that you were a bad person if you didn't reblog. On the same post talking about how cool her autistic brother was. 

See, I am autistic. I DO NOT WISH FOR MY NON-EXISTENCE.

And no, autism is not a detachable something where I would be the same person without it. And that means that a "cure" would include a price I am not willing to pay, even if it did mean that I never lost speech at a critical moment again in my life and I didn't ever melt down from sensory overload again in my life.
Wishing for autism not to exist is wishing for autistic people not to exist. It is wishing that you had a different brother. 

A specific autistic person wishing to not be autistic is a specific autistic person deciding that becoming a completely different person is a price they are willing to pay in order to not deal with the things autism makes more difficult, and that is a completely different issue than someone who is not autistic wishing to make someone else a completely different person. The person wishing to cure themself has the right to that, and the person wishing for autism to completely not exist is speaking over the MANY autistic people who would not pay that price, which is not something anyone has the right to do.

Everyone has the right to not wish for autism to no longer exist, because guess what? The statement goes much to far! Wishing that an actually voluntary cure existed, that autistic people could refuse without fear of losing the help they are currently getting, without fear of the refusal being used as evidence of being mentally unsound with which to take the choice away, and without fear that a family member (including a parent if under 18) could override the refusal? That's fine. Under those circumstances, I don't think there would be much argument from the actually autistic. Wishing for autism to not exist? That would require curing people like Amy Sequenzia, like Neurodivergent K, like Autistic Hoya, like Just Stimming, like Henry, like (insert any other autistic person who has ever expressed a desire not to be cured), and like me, whether they would rather refuse or no. That is entirely unacceptable. Wishing for autism to not exist is unacceptable to many, many actual autistic people.

Autism is not like cancer. Autism does not kill. (Epilepsy is not autism. Many autistic people also have epilepsy, but epilepsy is not autism, and there is no reason to believe that curing the autism would cure any of the other medical issues some autistic people have by extension.)

My notecards from Talk About Curing Autism's site.

 Trigger Warning: Curing autism, autism being called hopeless/devastating

Have some more notecards!

"About TACA." Talk About Curing Autism (TACA). N.p., n.d. Web. 12 Sept. 2012.

• According to their website, TACA is a national non-profit that aims to help families affected by autism, including by educating families and speeding up the time from diagnosis to treatment. They aim to improve the quality of life for people with autism. 

 

Ackerman, Lisa. "Our Story." Talk About Curing Autism (TACA). N.p., n.d. Web. 12 Sept. 2012. 

•  TACA was founded by the parents of an autistic child approximately 11 years after their son's diagnosis because they felt that a support group for parents with struggles similar to theirs would be helpful. 
• The common message is one of fear. The founders were told that "Autism has no hope, no cure," and institutionalization was recommended. It was in response to this message that they felt the need to form the support group.

 

"About Autism." Talk About Curing Autism (TACA). N.p., 29 Mar. 2012. Web. 12 Sept. 2012. 

• Talk About Curing Autism (TACA) describes autism as a devastating neuological and biological disorder. It lists communication, social skills, behaviors, learning, and medical issues as the five main areas autism affects. 
• TACA says "autism is a life-long disability for many affected individuals." As autism in the way the brain is wired and there is no cure, how are there any individuals for which it is not life-long? More likely, then, is that they consider autistic people who can pass to be no longer autistic, an opinion which ignores the extreme efforts required to pass.
• TACA claims that the one in eighty-eight statistic currently put out by the CDC for the prevalence of Autistic Spectrum Disorders is only for autistic disorder and does not include Aspergers Syndrome, PDD-NOS, or other ASDs.
• Language with negative connotations is commonly used to describe ASDs on the TACA website. Examples include calling autism "devastating" and stating that it "strikes" four times as many boys as girls.
• TACA holds that medical research is urgently needed in order to find a cure for autism, and that recovery is possible.

 That's it for this installation of notecards.

Just Imagine for a Moment

Trigger Warning: If it's related to oppression/dehumanization/abuse/murder of autistic people, it's probably in there.

Imagine that you knew beyond all shadow of a doubt that most people would abort rather than have a child like you, even many who think abortion is wrong.
Imagine that you knew that no one really saw you as fully human.
Imagine that you knew people like you were being tortured in an attempt to make them act less like you.
Imagine that you knew most people like you would be abused by people the world considers saints.
Imagine that you knew these "saints" would get away with it because simply dealing with you gave them the title.
Imagine that you knew your parents would, perhaps did, put you through risky and baseless treatments in an attempt to make you less like you.
Imagine that you knew that if your parents killed you, this would be seen as something that happened to them, that they would get the sympathy, that you would be erased from the story of your own murder.
Imagine that you knew the people who joked you had no soul weren't really joking.
Imagine that you knew people considered you incapable of emotion.
Imagine that you knew people dedicated their lives to making sure no one like you ever existed again.
Imagine that you knew people thought that you either stole their child from them or are what remains after their child was stolen.
Imagine that you knew people believed you couldn't understand what was said in front of you.
Imagine that you knew everyone like you was seen as inherently broken, inherently tragic.
Imagine that you knew no one cared what you wanted or thought should be done to help you.
Imagine that you knew the world wanted to replace you with a stranger in your body.
Imagine that you knew they finally found a way to detect people like you before they were born.
Imagine that you knew what that meant for people like you in the future.
Imagine that you knew what that meant for yourself as you grew older, that you would not meet others like you in younger generations.
Imagine that you knew the time limit this put on your fight for acceptance.
Imagine that you knew your words would be erased.
Imagine that you were like me, and tell me you wouldn't be afraid.

My first installment of NOTECARDS.

 Trigger Warning: Discussion of cures

Two sources today! 

Gernsbacher, Morton Ann. "How to Spot Bias in Research." APS Observer 19.6 (2006): n. pag. APS.  

           Association for Psychological Science, Nov. 2006. Web. 11 Sept. 2012.

1. In one study, the ability of autistic people to better recall which words they had and had not heard was chalked up to representing words “in an aberrant manner,” which seems odd unless you think about the preconceived expectations regarding autistic people. This is an example of study bias, as is the later assumption that the autistic participants in a second study which found no such difference must have also had other impairments.
2. Gernsbacher recommends removing all group labels from a study in order to test for bias. If the interpretations cease to make sense upon removing the labels, then the study is biased.

Chez, Michael, MD. Autologous Cord Blood Stem Cells for Autism. ClinicalTrials.gov. Sutter Health,    

          20 Aug. 2012. Web. 5 Sept. 2012. <http://clinicaltrials.gov/ct2/show/NCT01638819>.

1. The purpose of this study is to "evaluate the efficacy of one infusion of stem cells from autologous umbilical cord blood in patients with autism over six months after infusion as measured by changes in expressive and receptive language." It aims to do so by demonstrating improvements in behavior and learning, along with levels of several serum values. Improvements in behavior and learning will use measures of receptive and expressive one word vocabulary tests and a developmental disorders behavior index.
2. This study uses the banked cord blood of the children participating for the infusions 
3. The sample size is 30 children of mixed genders ranging in age from 2 to 7. They must be diagnosed with autistic disorder, not Aspergers Syndrome or PDD-NOS, and they must not have epilepsy, cerebral palsy, fragile X, muscular dystrophy, or known genetic markers that overlap with autistic spectrum disorders.

I am writing a paper (about autism, nanotech is soon)

Trigger Warning: Cure discussions

This FDA approved trial thing (details here, here, here, here, and here) has me scared. I admit it. Because they went and APPROVED this trial, and I can see all kinds of problems with it. And yes, I do sciency stuff, but I am an undergrad and autism is not actually my area, not by official education anyways. If I can poke holes in it, there are big holes in it. So I am going to do this official and nice with my i's dotted and my t's crossed and my sources cited and an annotated bibliography. I am going to trace the story of people trying to cure autism, from the useless to the harmful to the abusive to the fatal, pointing out failures in rigor and ethics all along the way, with the endpoint probably being the FDA study unless something else comes out between now and when I finish.
This is going to take a lot of time. I still plan to have this site update daily, but there will probably be an increase in things that are just what I think and not as rigorous, and there will definitely be days where the update is pretty much stolen from my work on this paper. You will be seeing all my note cards, for example. You'll probably also see some first drafts of paragraphs from different sections yanked together as one thing, and the story of my search for sources. The first edition is this post, of course.
And these are the kinds of sources I am looking for:

• Study ethics as related to humans
• Study ethics as related to children
• Study ethics as related to developmental disabilities
• Rigor as related to control groups
• Rigor as related to sample sizes
• What science is behind this thing they’re testing anyways? (Why do they think it will work, any cure attempts)
• Nicely citeable things arguing that a cure can’t/shouldn’t exist
• Nicely citeable things that support the idea that the cure would not actually be voluntary even if it legally was
• Anything on ethics of informed consent relating to children
• Anything on ethics of informed consent relating to people with developmental disabilities
• Anything that supports the thesis that lack of communication should be interpreted as lack of consent in the context of treating a disability that is not fatal
• Anything that is nicely citable and fleshes out “nothing about us without us” as an integral part of all things disability and all things minority.
• Anything written on the subject by an autistic person.
• Special bonus points for being nicely citeable and special bonus points for anything written by an autistic person that fits into any of the above categories.
• Minus infinity points for Simon-Baron Cohen and Autism $peaks sources.

Sources I have so far are:

• The links at the start of this post for details about the study
• Some Thoughts on the Stem Cell Thing
• Why All This Autism Research is Just So Much C*** 
• Writing About Autism and Science? 10 Things to Remember  
• Infantilizing Autism (And probably more from their journal)
• This one will be in a more citeable form- I asked.
• First US stem cell trial for autistic children launches today
• Safety and Efficacy of Stem Cell Therapy in Patients With Autism
• Don't Mourn For Us

Anyone who wants to send me more sources to use or more topics they think I should be looking at is more than welcome to comment on this.

Ignoring the people you say you want to help.

TW: Swearing. Also trying to speak for a group that was probably never spoken to by this person.

So, I received this message anonymously:

Stop being such a hipster about curing autism. Dont be so selfish. it most certainly wouldnt be forced. Because you're forgetting about one thing: money. Chances are people wouldn't even have the money to be cured. So fucking relax.

And this is what I said in response. Takedown time!

1) It’s not being a hipster to hold the MAJORITY opinion. And if you ask 100 autistic adults, guess what? The majority opinion is DO NOT WANT. Despite the fact that adult would be the area most likely to be biased towards the “lower functioning” because of when criteria for autism without a speech delay even came out. Nothing about us without us means you have to care what the people who have the disability want, so YOU stop telling the people you want to help that they must be wrong about what they need.
2) Ok, so how about the part where they are running a test that is assuming the kid is autistic because environment (autism is genetic) and trying to use cord blood to rewire a brain, which is scientifically unfounded. (That’s why they’re only using kids with no KNOWN genetic markers, which means they’ve got a combination of kids who have something like autism that isn’t and kids whose markers haven’t been figured out yet. Meaning not everyone in that study is necessarily actually autistic to begin with.) Which means they are going to be transfusing small children twice (transfusions hurt!) for something that has no reason to do anything, just like all the other fake cures that people would call abuse if it weren’t supposed to cure something that *gasp* even the portion of us you probably think you’re helping with this ask DON’T WANT. I know because I actually talk to them. *le gasp*
3) Go read this. That happened to someone who had already made it to the point of being a college professor. Go find all the stories of how people already HAVE been considered mentally unsound when they refuse treatments for things that are in the brain.
4) No, I remember money quite well. Quite a good section of the people who would be cured involuntarily have some sort of supports. Which also cost money. Denying supports in order to come up with the money to force a cure is the kind of thing I’ve already seen articles gaining popular support for.
5) How about you go have people assume you have the mental age of a two year old,  that you are a robot, that you have had your soul stolen, that crying automatically needs you need a nap even when there is a good reason for the crying, that dealing with you is such a burden, and then give sympathy to parents when they MURDER you. Let’s see how relaxed you are. Don’t tell people how to react to “We’re going to do research to make sure no one like you ever exists again.” The reaction to that is supposed to be outrage, last I checked.

A seller of MMS had his business closed down

 Trigger Warning: We are talking about MMS here, which some people think cures autism.

When a 'Miracle' Meets the FDA talks about it. Don't read the comments, by the way, unless you want to read people talking about how wonderful MMS is and how it's only not accepted because Big Pharma can't make money off it and how it heals everything and all kinds of unscientific things. (It's pretty much bleach, so it really does have some disinfectant properties. That doesn't mean putting it in your eyes or drinking it is a good idea, and between reading the comments and reading the article, I can tell that people have done both.)
There is not direct reference to the fact that MMS has been used by people to try to "cure" autism in this article, but they do mention that it has been touted as curing everything from malaria to ear infections.

Science based medicine posted an article in which they pointed out false advertising about MMS, and it seems that most supporters of MMS are the same people who think that Big Pharma is out to get us by keeping us sick and giving us drugs that make us need other drugs. (Actually, Big Pharma does seem to like medicating things that don't need to be medicated, like giving drugs that are supposed to keep autistic kids from flapping, but the fact that they are still doing vaccines, which don't actually make much of any money, suggests that they are not quite as obsessed with keeping everyone sick as they are obsessed with making everything that people already have seem like something to be treated.)

Anyways, I thought people might like to know that at least one person trying to sell it in the USA is in major trouble, and it is illegal in Canada as well. Mexico, however, does still allow MMS, and the ingredients can be purchased legally so far as I can tell, so there isn't really anything to stop a person from making it themself.

How my chat with Autism Speaks would probably go

Alyssa: Remember that one time I had oatmeal? That was good.

Autism Speaks: Yeah, but it felt weird in your mouth so you'll never eat it again.

Alyssa: No, that would be eggs. Or yogurt. Oatmeal is fine.

Autism Speaks: It's so sad that you can't eat scrambled eggs.

Alyssa: Not really. Vindaloo is better. Or waffles. I can just not eat plain eggs.

Autism Speaks: Give us money to fix you!

Alyssa: But I'm not broken.

Autism Speaks: So you're not really autistic? Autism is SOOOOO tragic.

Alyssa: Yeah, I'm autistic. I'd just rather live my life than moan about the tragedy I (don't) think I am.

Seriously. On the stuff they are selling at Walmart, they say their mission is to find a cure. Therefore, they want us to be not autistic. And they call autistic people burdens, tragedies, compare us to AIDS, cancer, diabetes, lightning strikes. You know, things that actually kill people. I'm actually toning it down a bit for their end. I know someone who is told to go play in traffic by Autism Speaks supporters for protesting them.

 

Autism Speaks and Walmart

Trigger Warning: Autism Speaks hiding intentions, cure

I know, I know. I'm late to the talk about this. Executive functioning, remember? That is the last thing I talked about. So, here goes:
They are selling school supplies in Walmart. 6% goes to them, and on the packages they list that they are a non-profit devoted to curing autism. On their website, they edited out the part of the package that says that.
Autistic people are up in arms over this. There is a petition on Change.org asking Walmart to stop selling the supplies. They probably won't listen, because hey, it's Walmart, but we can try. (Walmart is evil, last I checked, and while most of the parents who are at lower levels in Autism Speaks have good intentions, I'd be quite happy to call the organization itself evil, so they probably get along great.)

There are critics of Autism Speaks even among those who do want a cure for autism -- whether or not one wants a cure for autism, there is not a cure now, and much of that money could be going to much better activities, such as research on pragmatic topics and issues that affect Autistic people now, or providing services and supports for Autistic children, youth, and adults.

-Autistic Hoya (She does not support a cure or Autism Speaks, just so we're clear.)

And as for me, I don't want a cure in the world we live in today. These are my thoughts on a cure. Basically, if there were to legitimately be no pressure to become neurotypical, if being autistic were actually OK, if it were a choice a person made for themself and only themself,  with informed consent, I doubt there would be many autistics who chose to take a cure, but in that world? If it existed, and they chose it, I would shake their hands and wish them luck. In the world we actually live in, I expect that the cure would be forcibly used on children, would be forcibly used on anyone who receives services, and for any portions of the autistic community who technically were getting it only under informed consent, choosing not to would be used as a sign of incompetence, at which point it would be forced. That means any organization that states finding a cure as a mission is inherently not trusted.
Also, this: Anti-Autism Speaks
Essentially, Autism Speaks is not good for autistic people. They only use autistics who ever did anything cool in their scary numbers and on the occasion that said autistic supports them. If an autistic person dislikes them, they are clearly high functioning. (False, by the way. Here and here are two autistic people who need extensive support and don't speak, but still have major issues with Autism Speaks. Not tokens either. It's pretty common.)
The argument that Autism Speaks qualifies as a hate group isn't that hard to make. I would be quite happy if donating to them carried that same stigma that donating to the KKK carries. They do want to eliminate autism from the gene pool, after all, and I am autistic.Is it surprising that I don't like them?
Given all the issues with Autism Speaks, I think it is safe to say that whatever Walmart might think about what it's doing (they probably think they are doing something great for those less fortunate,) the right thing for them to do would be to take the Autism Speaks school supplies off the shelves. The right thing for parents buying school supplies for their kids to do would be to not buy the Autism Speaks school supplies. If you want to give to an autism charity, give to one that actually helps autistic people, not to Autism Speaks.
So, Walmart. Here's a heads up: I won't be shopping with you until the Autism Speaks supplies are gone from your store. I don't know if I can really afford to do that, but I would rather go without whatever it is I was going to get with you than give money to a corporation that supports Autism Speaks. I encourage everyone who cares about autistic people do make the same boycott if they can afford to.

What? Just WHAT?!

Trigger Warning: EXTREME Ableism, presumptions of incompetence

I can't believe someone said this, and neither can they. Apparently if you need services, you do not have the right to sit on a panel about how to handle the disability you need services for, because you just need to take whatever the taxpayers think a cure is. Here's the thing: Taxpayers who want to cure something tend not to have any idea what scientifically could or could not be related to the thing they want to cure. Disabled people do tend to know, because keeping themselves safe requires knowing everything they possibly can about their disability.
Also, why are we assuming that worth is directly linked to the myth of independence? Oh, and does their argument mean that I can still refuse treatments? Because I don't pay specifically for the counselor I have at college, but said counselor is not BECAUSE of my being autistic, nor is it done through disability services. In fact, disability services doesn't even know I'm autistic, partially because I don't want to deal with anyone who might have that kind of opinion: There are exactly THREE teachers on campus who know: One I told when I melted down abroad on a trip he was running, one put the pieces together and asked, and one because I wrote my ``response paper" about ``Quiet Hands."
But seriously? That reaction specifically about my own situation might give the impression that I think there is some HF/LF dichotomy- it's supposed to be making the point that even the person who they might think is completely independent, really isn't. And if the taxpayer thinks about it, neither is he. So maybe he doesn't get to sit on a board about education, which is meant to cure his ignorance? And he doesn't get to sit on a panel about the road systems, which cure his lack of transportation?
Anyone who argues that you don't get to have an opinion and enforce that opinion on your own life because you are too involved in the subject needs to think about what that would mean if it were applied to other areas of their own lives.