My Bit of Activism Today

It isn't much, but I thought I'd share my small bit of autism-related activism today. This morning, I was at my new university and happened across a message board with only one item, which advertised Generation Rescue and erroneous vaccine information, specifically regarding H1N1. So, I removed said piece of paper from the bulletin board. This kind of made up science has no place in an academic environment.

Who Does Autism Speaks Speak For?

(Or, the Diagnostic Double Standard)

Like most other people in the autistic Internet community, I've been following the growing outrage at Autism Speaks over "I Am Autism." I was pleased to see the discussion reach places which generally don't talk about autism-related issues, such as sf_drama and Daily Kos. (The Kos post is thanks to fellow Hub blogger and frequent commentator codeman38.)

So, of course, I read the comments, despite my long-standing observation that reading comments about autism on most non-autism blogs is a surefire way to work myself into a rage. (This mostly applies to the comments on Daily Kos.) And while I was pleased to see some people express pro-autistic, neurodiversity sentiments, other comments were indeed anger-inducing.

One comment which I see over and over again is the idea that "Autism Speaks isn't trying to speak for you." By you, of course, they mean us "High-Functioning" folks. And the assumption is, of course, that anyone on the Internet is High-Functioning. How this is known isn't entirely clear, but that's Internet diagnostics for you. So any autistic who dares to speak against the mainstream view of autism is Not Really Autistic, and many other autistic people are turned into the Other--scary, broken, dehumanized, and by definition unable to speak for themselves. (So the nice neurotypical people have to speak for them, apparently.) Hence producing a nice tautology in which any autistic who communicates anti-Autism Speaks views isn't really autistic.

There are strong arguments to be made that distinctions between autism, Asperger's, "low" and "high" functioning are rather arbitrary. I would also note that from many people I know, most older autistics diagnosed in adulthood receive the "Asperger's" label regardless of their early history. And with diagnosis of all ages there is a great deal of diagnostic gerrymandering on the part of professionals who have stereotypes of autistic people and parents who may prefer one label or the other for practical reasons (services, IEPs), or because they want their kid to be "aspie" rather than autistic. (Oh, the horror of being labeled simply "autistic.") But this diagnostic mess, while an incontrovertible fact, is not the main point of this post.

No, the point is that anti-autistic speech such as that in "I Am Autism" makes no distinctions between autistic people. Autism Speaks, you see, is rather fond of scare-mongering with statistics, specifically the latest "1 in 150" stat. While this statistic wasn't specifically referred to in this video, it was, I believe, obliquely referenced in the offensive and incoherent "autism works faster than pediatric AIDS, cancer, and diabetes combined" line. And guess what? That statistic includes all diagnosed autistic children. Including the ones with Asperger's diagnoses, and the ones who use the Internet. Not to mention the fact that the entire video refers simply to "autism," which is generally understood (in the scientific community) to encompass Asperger's and Internet users.

So, yes, Autism Speaks is claiming that it speaks for all autistic people, without any qualifications. While I often "pass" for more or less normal, I will not be silenced because I don't fit a particular stereotype, or because a lot of people have disgusting, dehumanizing views of "Those Real Autistics Who Are Scary and Defective." (And, keep in mind, many of the autistics who object to Autism Speaks do not pass for normal the way I sometimes do.) I don't claim to know every autistic autistic experience--no one person possibly can--but I am socially/medically marked as autistic, even if my diagnosis is Asperger's. And I will speak as an autistic person when I'm being degraded along with every single other autistic person. (And make no mistake--almost all anti-autistic speech degrades every autistic person in some way, even if it specifically targets "low-functioning autistic people.")

Moreover, as I've noted before, there is a pernicious double-standard at work here. That is, it's fine for a parent of an "Asperger's" or "high-functioning" child to speak about autism. Especially if they happen to be talking about how horrible autism is. But when an adult with exactly the same diagnosis speaks, suddenly we're suspect. As I found out when I criticized an essay by a mother with an Asperger's-labeled son.

I may be a competent Internet user, and my diagnosis is officially Asperger's, but Autism Speaks is claiming that it speaks for me. Autism Speaks apologists would do well to keep that fact in mind. If they have a problem with my being autistic, I suggest they take it to Autism Speaks rather than me. But good luck with that. Autism Speaks doesn't have a good track record when it comes to dealing with dissenting views.

Harry Potter and the Bigoted Charity

If you haven't already read my first two posts on the topic of the latest Autism Speaks video, please do so. This might make more sense in that case. Granted, this might not make much sense to you in any case, especially if you aren't familiar with the Harry Potter books and movies. Even if you are, I don't expect you to get all of the references--though I'll be thrilled if any of you does. Anyway, I hope readers will enjoy this regardless of your level of knowledge of Potter ephemera. Try to ignore the wonky fonts; I've given up my battle with Blogger over that.

THE SCENE--Autism Speaks offices.

THE CHARACTERS--ALFONSO CUARON and SUZANNE WRIGHT.

ALFONSO CUARON: Can I just say, Suzanne, how happy I am to be working with an organization which embodies my own philosophy?

SUZANNE WRIGHT: How so, Acadamy-Award-nominated-director?

CUARON: Well, your organization is called Autism Speaks, but you don’t have any autistic people on your board, and you don’t approach things from the perspectives of autistic people. I really admire that kind of sleight of hand in advertising. You see, I myself made a movie called Harry Potter and the Prisoner of Azkaban which might have also been titled Hermione Sue Granger and the Mostly Incompetent Side-Kicks.

WRIGHT: I can tell that we’re going to work very well together!

CUARON: Oh, I agree. I did have a few questions, though. I’ve looked at the footage, and frankly, it’s a bit dull. It’s just a bunch of autistic people with their families. Bor-ing! How about we add some visual interest? Perhaps a shrinking head, or a lengthy but useless sequence with a hippogriff flying into the sunset?

WRIGHT: No hippogriffs. We need to focus on autism and how it’s history's greatest monster!

CUARON: Scarier than my huge, CGI-rendered werewolf?

WRIGHT: Scarier than a werewolf.

CUARON: Hmmm….this has dramatic possibilities. I’ll be sure to include lots of melodramatic music and a scary voice-over. Now, how about the heroes of the piece? Every good movie needs to have prominent heroes!

WRIGHT: The heroes are we poor, long-suffering autism families, of course. Oh, our suffering is great, but we shall overcome the monster of autism, for we are strong and heroic. And we have lots of money of course, or at least some of us do…but I’ll trust you’ll leave that part out?

CUARON: Of course, m’dear. I like the idea of having autism families be the heroes. But what about Hermione? Could we also have Hermione be in the movie? She really helps improve every scene, if you ask me.

WRIGHT: I wasn’t planning on that, no.

CUARON: Really? That’s too bad. I had a great idea....

ENTER MOVIE HERMIONE

MOVIE HERMIONE: (gestures melodramatically) You have no chance against us, autism! Harry and Ron and I will defeat you! But not until I’m done making this weirdly timed speech!

The scenery begins to shift oddly, and two figures appear out of the mist—a girl with bushy brown hair and a red-headed boy.

BOOK HERMIONE: Not so fast there, doppelganger! It has come to my attention that this so-called “War Against Autism” is based off of a lot of misinformation, and these Autism Speaks people are the worst of the lot. Honestly, you’d get better information from reading Rita Skeeter.

WRIGHT: And may I ask how my leading autism organization is promoting misinformation?

BOOK HERMIONE: Oh, where to begin! Let’s start with the many falsehoods perpetuated in this video script. First, there’s the fact that the entire video treats autism as though it were some kind of monster! But I know from Fantastic Beasts and Where to Find Them that autism isn’t a monster. Oh, don’t get me wrong. Autism isn’t like the cruple-horned snorkack. It really does exist! But it’s not a physical entity at all, let alone some kind of monster. Autism is best described as a socio-medical construction which describes the way which some people think. It isn’t a monster or a virus at all.

And that brings me to the next point, which is that the video says that autism “works faster than pediatric AIDS, cancer, and diabetes combined.” But that’s a gibberish phrase which doesn’t mean anything. Maybe Autism Speaks meant to say that the prevalence rate of autism is now higher among children than is AIDS, cancer, and diabetes combined. It’s said that before, as have many other people who like to fear-monger about autism. But that doesn’t mean that autism works faster, or indeed, works at all. In fact, AIDS, cancer, and diabetes are all fatal if left untreated. Whereas autistic people have perfectly normal life expectancies, with or without any "treatment," most of which isn't scientifically supported, anyway. Ms. Wright’s organization is promoting a false analogy.

Also, Autism Speaks seems to be implying that the rate of autism is actually rising at an unprecedented rate. There really isn’t much evidence to support that, and most legitimate scholars believe that what we’re looking at is really just an increase in the rate of diagnosis of autism. A lot of solid research supports this position, including a recent study done right here in Great Britain! But I wouldn't expect an organization which talks about voodoo to have a good grasp of the scientific issues involved. Are you possibly related to Sibyl Trelawney? And also...

BOOK RON: Hermione, I think they get the point.

BOOK HERMIONE: Oh they do, do they? Then why do they continue promoting misinformation? And why aren’t they listening to all of the autistic people who oppose their advertising tactics and research agenda?

You know, the more I think about this, Ron, the more I’m seeing that this is a real issue of social justice, like with house-elves and werewolves and Muggle-borns. I should create an organization to fight this injustice! Hmm….let me think of a good acronym…

BOOK RON: Please make it better than spew this time, Hermione. And while this is all very well and good, you should also try to talk to autistic people before you go off and create any societies on their behalf. That’s what started this mess!

BOOK HERMIONE: That’s a very good point, dear. Now, if you’ll please excuse us, we have a lot of work to attend to…

(grabs Ron’s arm, starts to walk away, but stops and looks back on MOVIE HERMIONE.)

Oh, and by the way, stop using my name, whoever you are in the pink sweatshirt. The books clearly state that I only bother doing my hair up for special occasions. And I definitely would never stop in the middle of an important rescue mission to comment on my appearance. How shallow do you people think I am?

(Book Hermione and Book Ron walk away.)

WRIGHT: That was unpleasant. But our organization has gotten really good at ignoring people who disagree with us. So let’s just ignore that, too, okay?

CUARON: Fine by me. I just want to make a Dramatic Work of Art. I don’t care about what any books or scientists say.

WRIGHT: Alfonso, I knew there was a reason we hired you.

END SCENE.

An Aspie By Any Other Name...

Judging from the comments to my last post, it seems that I'm not the only one who has a not-entirely-rational aversion to the name "Asperger" and words derived from it--"aspie," "Aspergian," etc. Of course, there are more important reasons for opposing this kind of language--namely, that it creates a hierarchy amongst autistic people while not actually being terribly useful as a descriptive term. But on a more basic, aesthetic level, the words just bug. "Asperger" is, in my opinion, a most unattractive combination of letters and sounds. I say, only half-facetiously, that I might have acknowledged my diagnosis a bit earlier had Hans Asperger been blessed with a more pleasing, less harsh name. With all apologies to Shakespeare, an autistic person by another name does not sound as sweet.

Lots of Links

There have been some truly excellent posts on the Hub lately, as well as elsewhere, so I thought I'd compile them in one big post.

At Turner & Kowalski, Linday takes apart the myth that autism is "the next step in evolution." Really excellent explanations of the science involved, as well as the potentially ableist implications of this ridiculous statement.

Two great posts from chaoticidealism: First, a post on "Artificial Diagnostic Categories," and then a post about why AS/autism is not a bad guy which takes away free will.

Another critique of "Life As An Aspergian Female" on John Robison's blog: In three parts, from Life With Asperger's. This series expresses my own concerns with phrases which describe "aspies" as "childlike" and whatnot. On a slightly related note, I really dislike the word "aspergian," on a purely aesthetic level. (In addition to my reticence to use words which favor certain kinds of autistics over others.) I don't like "aspie" much, either, and it's only from seeing the word so often that I'm able to tolerate. But something about the sounds and letters of "Aspergian" is just so off-putting to me. Am I the only one?

A slightly older post from A Life Less Ordinary discussing how the "autism is curable" myth can affect an autistic child, in real life.

Not specifically autism-related, but it is disability-related: spacedcowgirl comments on problems of representation in the new TV show, "Glee." I really like the show's musical numbers, but if the show is just going to keep being about disabled people/people of color/LGBT people literally singing backup for straight, white, able-bodied people, then I will be quite disappointed.

Autism & Talents

When we (autistic neurodiversity advocates) say that autism gives us particular talents, we are not saying either of the following:*

-All autistic people have this talent.
-Only autistic people have this talent.

Both statements are, of course, absurd. What we are saying, however, is that in our particular cases, our particular talent is inseparable from the supposed "deficits" of autism. It's a very specific sort of statement--but nevertheless one which should be listened to. We are, after all, the experts on our own brains, and it is patronizing and incorrect to tell autistic people, "oh, you would still have that talent if you weren't autistic." Because for many of us, abilities and disabilities are related. We can't simply separate out our abilities and characteristics as though they are pieces of clothes.

I personally believe that my writing ability--an ability which has basically astounded other people since I first learned how to write--is related to my being on the spectrum and how I process information. Although I learned to talk more or less on schedule, communication through writing has always felt much more natural and comfortable to me, and I am undoubtedly much more adept at communicating through writing. Even now, I sometimes choose to communicate important information to family members through a note or e-mail, because that is just so much easier than having to talk about potentially difficult things orally. One English teacher told me that he wasn't quite sure what to make of me based on the way I was in class, but that whenever he read my essays he thought that I should be teaching the class. Though I can be very verbally articulate at times, if I'm comfortable with the subject matter, my ability to express myself verbally still pales in comparison with my ability to express myself on paper. I am told that for most (non-autistic) people, the reverse is true.

Obviously, not everyone on the spectrum is particularly adroit with words. (One need only look at the poor level of grammar on certain autism-related message boards.) Nor is every good or great writer on the spectrum--in fact, most (probably) aren't. But for me, my talent with written words is the flipside to the difficulties (stumbling, stuttering, etc.) I sometimes experience when speaking aloud. From 20+ years of living in my own brain, I know this to be true. I am the expert on me--not any researchers, professionals, or any of the folks who write the DSM.

When autistic people say that autism gives us talents, don't assume we're inappropriately universalizing. Consider such statements to be explanations of the way our minds work.

*Yes, some autistic people, generally of the "aspie/autistic supremacist" model, do say these ridiculous things quite explicitly. Sensible neurodiversity advocates, however, do not.

Mythbusters: Autism Speaks Edition

Myth: Autism Speaks isn't just a cure-focused organization.

Reality: According to its own materials, 65% of its funds are used for "research." No, not all of this research is cure-focused. But a lot of it is. Again, their own materials touting the research focus particularly on genetic discoveries. Most of the other projects described focus on cure, prevention, and normalization of autistic people--not quality of life or how autistic people can best learn.

The next-largest allocation of Autism Speaks funds goes towards "awareness." 28% of its funds are used to this end. Of course, Autism Speaks' idea of "autism awareness" typically means:

-raising funds for itself
-promoting the need for a "cure"
-fear-mongering
-dehumanizing autistic people

4% is devoted to "government relations"...much of which is lobbying Congress to allocate money for a cure through such acts as the "Combating Autism Act."

3% is devoted to "family services." What this means, exactly, is not entirely clear. But it's a pretty sure bet that most of this is not helping adults. Certainly adult issues are absent in Autism Speaks' 2008 Annual Report. The very way in which the issue of services is phrased--as services for families--renders autistic adults invisible.

So, the next time you see someone defend Autism Speaks on the basis that it does some good, really, please point them to the highly biased source of Autism Speaks' own annual report.