Denigrating Self-Diagnosed People Means Denigrating All of Us

In certain circles of the Internet, it's become fashionable to make fun of people with "Ass-burgers," particularly those who are self-diagnosed. (I prefer to use the term "self-identified," and will be using both terms here.) One needn't look any further than various snark communities and "humor" pages. When called on their ableism, people who make these kinds of remarks tend to defend themselves by saying something like, "Oh, but I don't mean to make fun of the real Asperger's sufferers! I'm just talking about the people who self-diagnose just to have an excuse to act like a jerk." Leaving aside the obvious ableism directed towards officially diagnosed people--you know, we "sufferers"--there are numerous other problems with that formulation, which I'll try to cover in this post.

I really hate having to say this, but I'm putting it upfront anyway: I have a professional diagnosis of Asperger's Syndrome. I don't think that means that people should take my opinions on the subject more valuable--though some people will, no doubt. And I'm aware that I may be perpetuating a highly problematic "hierarchy of diagnosis" by mention my diagnosis in this particular context. Nevertheless, I think it's important for those of us who are professionally diagnosed to stand with autistics who are not. So what I am saying is basically, When you denigrate self-identified autistics, you also denigrate me, an Officially Certified Aspie. You denigrate people who may well have experienced as many problems as I have, if not more. You denigrate autistic people who lack the class privileges and historical accidents which helped me to get a diagnosis in the first place. (My parents paid for it privately, and I'm in my early 20s.) And I'm not content to let you off the hook for your ableist remarks just because you're (supposedly) only talking about "Fake Aspies." Because, no. You're talking about all of us.

Most obviously, pejorative names like "ASS-burger" don't distinguish between those who do and don't have a professional diagnosis. Names like these denigrate all of us. They mock and demean our identity.

These demeaning remarks also tend to be rather patronizing and infantalizing, contributing further to the medicalization of our identities. Medical professionals are not the experts on autistic people. We are the experts on ourselves; we know ourselves better than someone with a fancy degree and we have the right to identify ourselves as such. I've heard one autistic person, after describing himself as autistic and gay, add that he "hasn't been officially diagnosed with that, either."

Ultimately, I think, all autistics who derive self-understanding from diagnosis are self-diagnosed to a certain extent. Because ultimately it doesn't matter how many "well-qualified" doctors diagnose you. If you don't believe you're autistic, you're not going to derive any benefits in terms of self-understanding. I know this well from personal experiences.

I also know several people who have derived great personal benefits from self-identification. (Some have since been professionally diagnosed.) I am talking about people who have spent their entire lives wondering why they were different from other people, why they experienced certain difficulties. I am talking about people who have had all sorts of psychiatric diagnoses which didn't fit, people who may have been institutionalized and spent years feeling depressed and suicidal. For many of them, self-identifying as autistic has provided significant help, self-esteem, and self-understanding.

So to those who mock all self-diagnosed people ("ASS-burgerslool!!11"), I have to say quite simply: f**k you. You do not know of which you speak. You are simply revealing your own ignorance and undeserved social privileges.

Are there some people who self-identify as autistic who aren't "really" autistic? Probably, yes, though I think their number is lower than most would suggest. I would also point out that because autism is diagnosed through behavior, a lot of this is in a gray area in any case.

But so what if a few people self-identify on a flimsy basis? Who are they really hurting? I don't think they're hurting me, a diagnosed Asperger's autistic. People who wave the "ASS-burger" flag, however, are demeaning all diagnosed and undiagnosed autistics, however, many of whom have suffered greatly because they and people around them did not understand their neurological differences.

And if you're thinking "well, those self-diagnosed people should just get a diagnosis," then I'd point out that things really aren't that simple for most people. Here are some common reasons why autistic people do not have official diagnoses:

1. Age. The current autism criteria did not come into being until the late 80s/early 90s, and awareness of the autism spectrum has lagged even further behind. The older an autistic person is, the more likely he/she is to be undiagnosed.

2. Money. I'm not as familiar with the countries outside of the U.S., but I do know that there are significant financial barriers to obtaining a professional evaluation and diagnosis. Insurance companies typically do not cover adult autism evaluations--and, of course, not all Americans are lucky enough to even have insurance. A comprehensive autism evaluation can cost as much as $2,000--if not even more. This is a significant expense for most people, let alone autistic people who may be unemployed or underemployed.

From anecdotal information I've heard from autistics outside the U.S., it seems as though the practicalities of getting referred to a qualified professional even in countries with universal health care can be difficult. So living in a country with a better healthcare system isn't necessarily a cure-all, either.

I know there are a lot of adults who would love to be evaluated for autism, but can't for financial reasons. So to anyone who complains about self-diagnosis: Unless you're willing to pay for every adult who wants an evaluation to receive one, you don't have much room for criticism.

3. Professional ignorance. Professionals keep working to diagnoses autistic people at earlier and earlier ages--because we're all doomed if we're not diagnosed by the age of two, you know--but tend to know very little about evaluating adults. Indeed, there aren't even any specific criteria for evaluating adults--a problem when many autistic adults learn to "pass" as neurotypical to varying degrees. And while consultation with parents or others who knew the autistic adult as a younger child can help provide corroborating evidence for a diagnosis, this isn't always practical, for a variety of reasons. I know autistic adults--particularly women--who have had difficulties finding qualified professionals to evaluate them even in well-populated areas. How much worse might it be for autistics in sparsely populated areas?

4. Stereotypes. This is particularly an issue for women, but it's certainly not limited to us. Talk to enough autistic adults and you'll find tons of stories of professionals telling them they couldn't be on the spectrum because...

-They're female
-They can talk
-They have a job or have graduated college
-They are in a long-term relationship
-They have a friend--may sometimes be plural, but sometimes only singular
-They can make (or fake) eye contact
-They aren't like this other autistic person known to the professional
-They are an adult! If they were really autistic, they would have been diagnosed as a kid.

The last one is particularly high on tautological "logic."

And unfortunately, the list goes on. When so many professionals are so ignorant, why on earth would autistic people--diagnosed and not--want to spend more time than necessary in the psychiatric system?

These are just some structural reasons why autistic people who might want a professional diagnosis sometimes can't obtain one. There are other reasons, too--political reasons, not seeing the necessity, not wanting to spend any more time in the psych system after previous bad experiences. And I think all of these are legitimate. But the discussion of self-diagnosis needs to take these structural issues into account.

When I see people mock self-diagnosed "ASS-burgers," I cannot help but wonder just who the asses really are.

Links

Some great posts I've read recently:

An autistic adult reflects on interning at an ABA-based school.

Chaoticidealism explains why associating Asperger's with being a jerk is fallacious.

An autistic self-advocate discusses attending the recent "National Town Hall by Advancing Futures for Adults with Autism." After reading this post, I definitely see that my own decision not to attend was fully justified. I have no interest in being anyone's token, and I have even less interest in paying Autism Speaks and partners $100 for the experience.

Joseph discusses the Hertz-Picciotto study (2009) and how it has been misused by both anti-vaccine people and its own researchers.

Feminists With Disabilities explain why it is important for socially conscious individuals to work on removing ableist words from their vocabularies. To be honest, I've had a hard time removing a few ableist words ("idiot," "crazy") from my vocabulary, and I'm still working on it. But my having to find new words to express certain ideas is not more important than the oppression which all disabled people experience, which is reinforced by language. (I myself get viewed as "crazy" a lot, so in that sense I've been supporting my own oppression.)

The Sunday Times to 'Defective' People: Don't Have Children

Thank you to Left Brain/Right Brain for bringing this item to my attention.

So apparently Minette Marrin thinks that people with "learning disabilities" should not have children. And she and The Sunday Times think it's appropriate to publish this. (I don't think that Marrin understands what learning disabilities are, actually, but that's a sidenote. Marrin is lumping all of us "defectives"--"low intelligence," "learning disabilities," etc. together.)

As an autistic woman, with an autistic male partner, I find reading this kind of thing incredibly disheartening--not because I think pro-eugenics people like Marrin have any legitimate points to make about my own child-rearing capacity, but because I fear encountering this kind of ignorance and prejudice should I in the future choose to have children with my chosen partner.

Because according to Marrin, it's entirely acceptable for government institutions to seize children of disabled people. That's the most cost-effective way to deal with us mental defectives having children. It's tragic, but it's our only choice.

Why do these discussions always seem to assume that ideal parents should be able to provide their children with everything, when many parents--the financially privileged ones--hire other people to raise their kids? Why is it okay for a "normal" set of parents to hire a nanny to cook for them and raise the kids, but providing any degree of help to disabled parents is seen as impractical?

I do not mean to sound like Hillary Clinton, but it really does take a village to raise a child, and I highly doubt that you can find a child who was raised and taught only be his/her biological parents and no one else. But when privileged people outsource child-rearing, they're just providing the best for their kids. When disabled people fail to live up to ideals which are unattainable for everyone? Well, they're clearly unfit parents who need to have their kids taken away.

These double-standards are quite pernicious.

Debunking Neanderthal Nonsense Part II

Previously, I discussed how the Neanderthal hypothesis is wrong on race. In the comments, Joseph brought up what is perhaps the most important scientific point of all: the "aspie quiz" is not peer-reviewed. That in and of itself is cause for serious skepticism. It's up to proponents of the hypothesis to provide sufficient evidence; we skeptics are merely taking the intellectually cautious position. But this series isn't only about science. As I did with race, I'd like to pick apart the sociological implications of this hypothesis:

Part II: D is for Disabled and E is for Equal

One problem (of many) with the Neanderthal hypothesis is that its architect has shown--in both his official website and various forums--a reluctance to acknowledge autism--and other neuro-atypicalities such as AD/HD, OCD, and dyslexia--as disabilities. Now, I agree that some neuro-atypical people are not necessarily disabled. Whether this is a result of their own coping mechanisms--which often require expending a great deal of energy, in my experiences--or disability-mitigating environmental factors varies between people. So I am not necessarily opposed to the idea that someone can be autistic (or AD/HD, etc.) without experiencing significant disabilities on a day-to-day basis.

But I fear that Neanderthal hypothesis adherents often, in their attempts to make everything fit into this hypothesis, often make statements which are overly dismissive of the very real disabilities which many autistic people do face on a daily basis. Motor skills provide a particularly good example of this. The author of the Neanderthal hypothesis is adamantly against referring to "aspie" qualities as "deficits," but the alternative which he presents in place of the deficit model is actually deeply, deeply ableist, and at times seems to invoke a simply bizarre view of the autistic experience, in my opinion. This is particularly apparent in his comments about motor abilities:

Neanderthals had a high protein diet and killed their prey at close distance. A theory proposes that Neanderthals clinged onto the fur-coat of large mammals and killed them at close distance, possibly after wrestling them down. There is some evidence for this in autistic preferences. Autistics have an urge to climb and an urge to jump over objects. These peculiarities might be related to Neanderthal hunting techniques.

First off, it should be pretty obvious that none of the Neanderthal stuff has been scientifically confirmed. This is a far-reaching speculation based off other far-reaching speculations. If any one of these speculations were to be false or exaggerated, the entire "theory" would collapse. The visual metaphor I came up with is a skyscraper made out of cards. You simply can't reasonably expect such a thing to stand up for very long.

Scientifically, there are some dubious leaps of logic. After all, if autistic people are categorically "better" and more "instinctive" at jumping and climbing, wouldn't we expect to see disproportionately large numbers of autistic athletes in track and field events, for instance?

Yes, many autistic people have urges to climb and jump over things. I'm one of them. It's a stimmy type thing, for me at least. But I'm not sure how this relates to dyspraxic tendencies, let alone how this proves autistic people's prehistoric ancestors engaged in particular hunting techniques. I personally can still be a total klutz while I'm engaging in pleasant, full-body stims.

Anecdote time: I like to pace, run, and leap over things in my room. One time while I was doing this, I was unable to balance myself very well on the landing and ended up falling quite badly, spraining my ankle. I highly doubt that a typically-abled person would have gotten injured in quite this way. It was a bizarre combination of autistic stims + dyspraxic tendencies. I was incredibly embarrassed by this incident at the time. So, just because autistic people enjoy leaping doesn't necessarily mean that such stims cure all of our difficulties with motor skills and balance. Far from it, in my experiences at least. Perhaps this is true for some autistic people--I don't want to position my own experiences as the only, or most valid, autistic experiences. Nevertheless, the Neanderthal hypothesis' refusal to treat dyspraxia as a disability erases many of our experience. The author is so intent on making us out to be super-powered humans that he obscures difficulties and fetishizes physical able-bodiedness. I doubt that I would be able to kill a prehistoric mammal in the manner described here. But so what? Does that make me any less valuable of a human being? Does that also mean that people with physical disabilities are less valuable? After all, people with more general mobility impairments were probably not hunting mammals in the imaginary prehistoric past. When we start to stress physical ability so much, we are quite simply being ableist. The misapplication of Darwinian theory to a mythical prehistorical past is an old tactic which has often been used to practice eugenics against disabled people--all disabled people. Far from rejecting ableism and neuro-bigotry, the Neanderthal hypothesis actually repackages it in a guise of neurodiversity.

An Autism Speaks ad which was well-circulated during last year's Olympics tells parents that while their child only has a 1 in 28,500 chance of being an Olympic athlete, he/she/ze has a 1 in 150 chance of being diagnosed with an autism spectrum "disorder." This presentation of the issue is ableist and elitist, fetishizing athletic ability as the pinnacle of human worth and achievement. Because obviously, every parent wants their kid to be an athlete, and it's just an absolute tragedy if that doesn't happen. (Although one can be an autistic athlete, actually.) The Neanderthal theory might seem to be less noxious on the surface of things, but it too presents a view of human worth which fetishizes ability.

Yes, we need to reject the medical model, and yes, we need to start acknowledging autistic people's abilities, not just our disabilities. But the Neanderthal model: a) Misrepresents the experience and yes, disabilities, of many autistic people and b) Denigrates many other disabled people, including many autistic people. Particularly those who don't fit the author's "shiny aspie" model, I would add. And heck, many of us who do have Asperger's diagnoses aren't adequately represented by this hypothesis.

Responsible neurodiversity advocates are making the argument that being autistic is a legitimate way of being even if we are disabled. We don't need to prove that we could have been good hunters in the days of Neanderthals to justify our existence. We don't need to justify our existence at all, though many ableist individuals and institutions might demand that we do.

And we certainly don't need to "prove" that we're categorically superior to so-called "NTs" in certain areas. This kind of binary thinking is both inaccurate and unproductive, and again suggests that Ability--however defined--is the most important criteria for human worth.

I don't know very much about the evolution of humans and our primate cousins. But I do know that my value as a human being does not rest upon nonsense theories.

I may or may not be inspired enough to write another post in this series. In these first two posts, I hope I have successfully exposed the hypothesis' blatant racism and somewhat more latent ableism. Because that's not what neurodiversity is.

This Week's Glee: The Good, Bad, and Horrific

I'm still watching Glee, messes in representation aside and thought I would provide a few thoughts on this past week's episode. For another disability rights take, I highly recommend The Transcontinental Disability Choir guest-blogging at Bitch.

THE GOOD:

I feel compelled to add this category, partially because I don't want it to seem as though I don't have anything but complaints about the media. And partly because there were a few good things in this week's Special Disability issue.

-At a few points during the show, accessibility problems were brought up, in the context of providing ramps, wheelchair-accessible buses, and just in general. Even the "able-bodied kids using wheelchairs" bit had some good stuff in this regard, as the show highlighted just how wheelchair-unfriendly the typical high school is.

-Will's sanctimony and condescension was openly pointed out by Sue, when she told him that Becky (the student with Down Syndrome) simply wanted to be treated like everyone else, instead of being condescended to as Will would prefer. (Will and his ableist, do-gooder impulses were particularly apparent this episode, what with his "oh, I must help the poor disabled boy tie his shoes" schtick.)

Unfortunately, these strong points were undermined by...

THE BAD AND HORRIFIC:

-There was still a great deal of condescension and ableism towards people with disabilities that went unquestioned. It isn't clear whether we're supposed to roll our eyes at Will helping Artie with his shoelaces.

-Artie's character is still crip drag, and is still made out to be an object of pity. His character also remains fairly undeveloped, though that is also the case for most other minority characters on the show.

-Cheerleading coach villain Sue was "humanized" this week. And how was she humanized? Because we found out she has a sister with Down Syndrome. That's right. Suddenly we're supposed to see that she's actually a good person because she's nice to her disabled sister. (And she gave an opportunity to a girl with the same disability as her sister, and she donated money for wheelchair ramps which the school was legally obligated to provide in any case.) I find this absolutely disgusting, as it seems to indicate that characters with disabilities exist only to prove "background story" and "humanity" to the "normal characters." They are, at best, plot devices, rather than true characters. I can't believe some people are seeing this as a good way to include people with disabilities. And please, don't expect disability rights advocates to pat this show on the head for hiring a few actors with disabilities in minor roles. Just because the show considered Down Syndrome harder to fake for the general public than paraplegia doesn't mean it's doing anything to expand opportunities for actors with disabilities. These two minor roles (which probably won't even recur again, I would guess) don't make up for the aforementioned crip drag, let alone for the ways in which people with disabilities are being used in this episode.

-We have the revelation that Tina has actually been faking a stutter all this time. This just is not accurate. There is no way that someone could convincingly fake a stutter for that length of time. It just doesn't happen. This portrayal is potentially problematic because of the ways in which it might imply to the unthinking general public that people with speech impairments are faking. See this discussion for further explanation of this. I might also add that while the stutter plot is nonsense, I think we might now think of Tina as having another disability--social anxiety and perhaps even, dare I say, shades of specrum-like qualities. I really related to her when she talked about not wanting to have to talk and connect with people. (Though I fail to see why one must have an excuse for it.) But the show's explanation behind the fake stutter was just ridiculous, unrealistic, and completely ignored the stigmatization and discrimination which people with speech impairments regularly face.

-The show's ending: To resolve the various disparate plot lines, we see Finn get a much-needed job by pretending to be a real disabled person. That's right; people with disabilities can get jobs just by showing up and threatening people with discrimination suits. Don't we have it so easy? Certainly no problems with underemployment and employment discrimination exist, or at least not in the world of this show. Truly, I cannot fully express how flabbergasting this is.

Cathood Speaks

Check out this video which I found on the asperger Livejournal community:



Also, cats are awesome.

Best Online Shop Ever

This is an incredible online shop. I got a few things from here today, and am enjoying them muchly. I particularly like this.

Must Be Tuesday

Columnist writes offensive article about the "suffering" about the spouses of "Asperger's-inflicted" people. And by spouses she means wives, because women who are Asperger's autistics apparently don't exist. (Nor do non-heterosexual autistics.)

Not only do women and non-heterosexual Asperger's autistics not exist in columnist Karin Maria Friedmann's world, but heterosexual Asperger's autistic men are invariably cold, unemotional beings who don't actually care about their relationships and aren't capable of loving, companionate marriage.

As someone who has been in a relationship with an Asperger's autistic man for 3+ years, I call shenanigans. Shame on Friedmann for not only rendering much of the autistic population invisible, but for stereotyping the small segment of autistic people whose existence she does acknowledge. And shame on Salem-news.com for publishing such offensive, stereotypical nonsense.

There's a failure of empathy here, but it doesn't come from autistic people.

An Autistic By Any Other Name Part II

I've written before about why I don't like the word "aspie" or the name Asperger. But on a more serious note, I'd like to discuss the diagnostic manual changes which have been proposed for the DSM V.

I have a diagnosis of Asperger's Syndrome. I am not, however, particularly attached to the diagnosis at the exclusion of all other autism spectrum categories and labels. I just don't see it as being that big of a deal, as long as those of us with older paperwork that says "Asperger's" are still going to be recognized as being autistic. But I don't really see that as much of a problem.

But, as Sadderbutwisergirl blogged about, the problem is that some people--particularly those whom have made their livings off of being an "Asperger's expert"--are overly attached to the diagnosis, and are spewing ableist nonsense about why the diagnosis shouldn't be (officially) eliminated. The article does, for instance, quotes Tony Attwood:

The general public has either a neutral or fairly positive view of the term Asperger’s syndrome. But if people are told they should be evaluated for autism, he went on, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.

Several things wrong with this, most notably the fact that Attwood shows no interest in destigmatizing autism and everyone who carries that diagnosis, now or in the future. (Of course, there's a good argument to be made that Attwood has contributed to the stigmatization of the Asperger's label as well, but that's a side argument.) He's happy to stigmatize and exclude the "really autistic people" from full humanity--you know, the ones who don't talk or have any friends--but G-d forbid anyone should put a dent into his precious "Asperger's" industry. Because we can't possibly have that. It just rubs me the wrong way. His alleged concerns for autistic people who may not want to be evaluated completely misses the larger point: People concerned about stigmatization are going to remain concerned about stigmatization until both "autism" and "Asperger's Syndrome" are more fully understood and accepted by the larger public. And, contrary to Attwood's statement, the "Asperger's Syndrome" label--or, as the DSM IV puts it, "Asperger's Disorder,"--does still carry stigma. (Says the person whose parents lied to her about why she was seeing a clinical psychologist who was actually evaluating me for said "disorder.") Sequestering ourselves in certain diagnostic categories is not going to help all autistic people, or even any autistic people.

I'd also note that "Asperger's Syndrome" is already stigmatized to some extent both online and off--one need only look at Encyclopedia Dramatica, for instance, to see evidence of that. Attwood's idea that the general public sees Asperger's Syndrome as positive or neutral is not, in my view, borne out by the facts. Attwood himself is privileged because he does not carry such a label; his views on the matter are less significant than that of those of us who do have such an identification.

Responding to other various comments about DSM revisions:

The trick is to “walk the tightrope of truth,” Dr. Swedo said, between providing clear, easily used diagnostic guidance to clinicians and capturing the individual variation that is relevant to treatment. “People say that in autism, everybody is a snowflake,” she said. “It’s the perfect analogy.”

Well, I don't know about that being a perfect analogy. Snowflakes pretty much all look the same to the naked eye, after all. But I certainly agree that the diagnostic process needs to take everyone's individuality into account. I don't believe that shoe-horning people into artificial categories of "Asperger's" or "low/high functioning" is the way to achieve this. I certainly hope the new system allows for a more fluid, individualized system of identifying people's strengths and weaknesses. (Notice that I include strengths.) I'm not sure how well it will actually do this, as the descriptions I've seen hencefar are rather vague. Some of what I've read leads me to believe this new system may invoke high/low "functioning" hierarchies, which I object to. I can only hope that the DSM committee can do better than that.

Temple Grandin:

Temple Grandin, a Colorado State University animal scientist who is perhaps the best-known autistic American, said Asperger’s was too well established to be thrown overboard. “The Asperger community is a big vocal community,” Dr. Grandin said, “a reason in itself” to leave the diagnosis in place.“P.D.D.-N.O.S., I’d throw in the garbage can,” she added. “But I’d keep Asperger’s.”

I'm not seeing the logic here. (And I'm also not understanding if she means "the Asperger community" as in non-autistic parents or as in autistic people. Big difference here.) If "the Asperger community" is a "big, vocal community," then surely it will be an even bigger force when joined with the autism community. (Though again, I don't know what she means by this.) In fact, many major social sites for Asperger's autistics have expanded to include all autistic people (often including those with Non-verbal Learning Disability as well). See Wrong Planet and the Asperger Livejournal community. (These sites do have a lot of exclusionary names and content, unfortunately, but there are also many autistic people with non-Asperger's autism diagnoses who post on these sites regularly) So, it would seem that the wider autistic community is already integrating itself. And the parent-dominant community is as well, in my view. Some of the biggest vaccine causation promoters around have kids with Asperger's diagnoses.

So Temple's objection doesn't really make much sense, upon investigation, and I'm not sure what her other objections are. Incidentally, I agree with her about PDD-NOS: the term is quite ill-defined right now, and its uses vary widely. If one purpose of all of this is to eliminate confusion, then eliminating the PDD-NOS label is surely one way to go.

Lee Grossman:

Our kids will do much better if medical conditions such as gut issues and allergies are treated.

I'm not sure how this relates to the DSM. Addressing medical issues such as these are quite beyond the DSM's capacity, I'd say. Of course autistic kids (and adults!) deserve quality medical care. (i.e. Not that which is provided by DAN doctors) I'm not sure what the psychiatrists and psychologists can reasonably do about this, however. If Grossman is implying that all autistics have these kinds of medical issues, he's just plain wrong. And if he's suggesting that this be included in the diagnostic criteria, he's even more wrong. Not only would this be unprecedented, but it would also suggest a false, scientifically unsupported idea of what autism is.

By all means, revise the DSM. But in doing so let's not inflict an unsupported and idiosyncratic notion of what autism is. And let's not further create hierarchies which could have negative consequences for all autistic people.

Missing in Causation Talk: Actual Autistics

Today I listened in a bit to the IACC conference call on "risks and prevention." I ended up not listening to the entire thing, partly because I'm quite busy, and partly because the conference call format just does not work very well for me in terms of processing information and understanding what it's said. And because of the different volumes at which people talk, I find myself constantly having to adjust the volume to prevent sensory overload. It is telling, I would say, that the IACC would select such an autistic-unfriendly method of holding its discussions. A chatroom, or another written format, would be much more accessible.

But the main reason I stopped listening was because of the conference call's content, and the fact that I have very little desire to expend so much effort to listen to a discussion in which I am unable to speak and disagree with the premises so profoundly.

I know that I and other autistic people and allies, in filling out the IACC's survey this past summer, took pains to point out that we do not feel that causation research is at all beneficial to autistic people here and now. We do not think that "prevention" research is ethical at all, and we want to be heard in these kinds of conversations.

Alas, the IACC did not seem to consider these concerns relevant to today's discussion, nor were any actual autistic involved in the discussion, as far as I can tell. (Except as non-speaking listeners.) All I heard was various talk about causation research, genetics vs. environment, vaccines, blah blah. It was assumed that the premise of this conversation--we need to figure out how to "prevent" autism--was shared by all. The "controversy" discussed was limited to the controversy of genetics vs. environmental causation.

Someone said, of genetic research, that it hasn't produced effective results in all of this time we--the taxpayers of the U.S.--have been funding it, and wondered if it might not be a fruitful line of inquiry. I disagree with the implication that genetics are not a strong factor in autism causation, but in a way this person--albeit unintentionally--brought up a good point. In terms of affecting the lives of real autistic people, genetics research--while it has identified literally dozens of possible genes involved--hasn't done a damned thing of actual value.

Now to this, I say, let's stop pouring so much money into genetic research. When so many autistic people are living in institutions or are homeless, when so many autistic people are unemployed and lack access to a quality education, it strikes me as unconscionable that our government is continue to pour billions towards genetic research. But of course, that's not what those in power in the IACC are saying. What they're saying is, let's put billions of dollars to "environmental research" (which for many means nothing but vaccines), which is equally useless for autistic people.

We need to get beyond causation, beyond genetics vs. environment/vaccines. These kinds of discussions miss the point spectacularly.

And for G-d's sake, autistic people deserve the chance to speak when we're being talked about.