On Passing and Not Existing

So according to self-proclaimed "autism advocate" David Kirby, autistic adults don't exist. He knows this because he doesn't think he's met any autistic people throughout his life. Yes, that's right--Kirby can tell if someone is autistic or not just by looking at them.

This kind of ignorance from someone who has supposedly spent years researching autism is almost too astonishing to fathom. I suppose he doesn't think that one of his co-bloggers at AoA, Jake Crosby, exists either. Not to mention the many of adult autistic self-advocates who have expressed their disagreement with Kirby in the past. This isn't just Kirby not bothering to look for autistic adults. This is about Kirby--and many others--willfully ignoring our existence.

This is inexcusable, and the Huffington Post deserves to be roundly and loudly condemned for continuing to give voice to a man which renders an entire class of people invisible. Arianna Huffington and David Kirby, take note: We Exist. And we will not stand to have our very existence negated for some journalist's pet conspiracy theory. This is neurotypical privilege in a particularly noxious and irritating form.

One major reason why I haven't been blogging as much lately is that I've been very, very busy and exhausted. This busyness has involved being in more social situations. All of this means I'm expending a huge amount of effort in trying to "pass." To some extent this works. If Kirby saw me on the street at most times, no doubt he would classify me as an adult who isn't part of the big, scary autism epidemic which doesn't affect anyone above the age of twelve. But he would have absolutely no idea of how much effort it takes for me to act the part so much of the time. Because most of the time I'm able to keep my hand-flapping and echolalic-like speech confined to moments where no one is watching. Because I am usually able to seem okay to most people even if particular situations and all of the sensory input is stressing me out hugely on the internal level.

Kirby and others who echo his sentiments are essentially using my ability to pass--and the exhaustion and stress I experience while doing so--to claim that I and others like me don't exist. And to that I have nothing to say but a string of expletives which I shall refrain from repeating.

The Power of Self-Identification

So a blog at The New York Times has an entry about the words "aspie" and "autie." Predictably, ableism ensues in the comments. But autism and Asperger's are terrible diseases! We can't possibly trivialize the suffering of afflicted individuals and their families! (Have to mention the families, of course.)

Uh, no. I've talked before about why I don't like the word "aspie" or "Aspergian." I'm agnostic on "autie." But the comments are criticizing these words for very different, misguided reasons. It's because Autism/Asperger's are perceived as Terrible Things, which can't possibly be given "cutesy" names. Even if people with the conditions in question came up with these terms and many of them choose to refer to themselves as such. But no, we can't possibly have that. Instead we need to continue our unquestioning devotion to medicalization.

Because apparently autistic people ought not come up with our own self-identifications. We need to let ourselves continue to be defined by doctors and others and ought not complain about it.

This idea runs utterly contrary to basic principles of self-determination. But of course, autistic people are habitually denied that. And so some would want to deny the validity of our self-identifications as well.

I certainly don't support calling someone aspie/autie who patently wishes not to be referred to as such. But when many autistic people are using these terms, it's just plain wrong to completely jettison them under the banner of political correctness. Because at its heart, PCness done right is simply calling people what they want to be called. It's like choosing to call someone Bobby instead of Robert because of their preference. Yet asking to be called "autie" as opposed to "a person afflicted with autism/Asperger's Syndrome" is apparently a big no-no for some people.

And we're the ones who lack social skills?

"Glee" Fails in Representations

I've mentioned in passing that I'm watching the new TV show Glee despite my own extreme misgivings about the show's representations of minority characters. I love fabulously cheesy song and dance numbers, and the idea of a high school show based around a club appeals to the geek in me. Nevertheless, it's increasingly hard to ignore the show's continual marginalization of minorities--based on race, disability, and sexuality.

On the surface, the show's cast seems more diverse than most, particularly in regards to disability. There are at least two whole characters who are clearly marked as disabled--wheelchair user Glee kid Artie--whose actor (Kevin McHale) is not really a wheelchair user, by the way--and OCD guidance counselor Emma (Jayma Mays). I've also heard the suggestion that there's another character with a disability, as the show may be representing Tina (Jenna Ushkowitz, token Asian-American chick) as having a lisp. I can't tell, as she has so very few lines. (Of course! Quiet Asian girl stereotype combined with possibly the "people-with-speech-impairments-don't-talk" stereotype!)

Nevertheless, the show's "diversity" is superficial at best. Anyone who's sat through a single episode can see the ways in which people of color, people with disabilities, and LGBT people are literally singing backup for the white characters throughout the entire show. They do not receive significant storylines--or, indeed, any storylines in many cases. Their characters are vague and generic. They do not sing or dance solo very frequently, if at all. While I happen to love Rachel's (Lea Michele's) voice--as my iTunes will attest--she and Finn (Cory Monteith) are surely not the only members of the Glee club who can sing. But aside from Mercedes (Amber Riley)--whose voice is also great--we haven't gotten to hear any of the minority characters sing. At all.

Tonight's episode uncomfortably drew attention to this inequities, only to replicate them yet again. The story is that Sue Sylvester (Jane Lynch), now co-directing the Glee club along with Will Schuester (Matthew Morrison), is, as usual, trying to create disaster for the Glee club. Through her cheerleader spy Quinn (Dianna Agron), she learns that "some of the minorities aren't happy" (paraphrase) with the way things are going in the club. Gee, I wonder why!

So Sue, in a devious plan, breaks up the Glee club by choosing to direct only the minority kids (including Artie and white gay guy Kurt, Chris Colfer). She makes obviously insincere and sanctimonious comments about minorities' oppression throughout the episode. Ultimately, the club comes together and repudiates the bickering leadership of Will and Sue. Will spouts off some drivel about how "you are all minorities." Sue's plans are, yet again, foiled. There is a fantastically cheesy song and dance number about coming together--in which Rachel and Finn take the lead vocals yet again. And so all is well, until next week.

Except for the fact that the show brought up the issue of minority marginalization only to mock and discredit it by putting over-the-top words in the lying mouth of the show's villain. While I certainly don't expect "Glee" to provide brilliant insights on the state of racism/ableism/homophobia in today's world, the flippancy and triteness with which these issues are dismissed would be shocking were not for the fact that this is a Fox show.

Blog Rec: Feminism & Disability

I'd like to point readers towards FWD/Forward, a new blog by feminists with disabilities. It looks like there is going to be a lot of interesting and educational material for people with varying degrees of knowledge of feminism and disability rights.

A few of my favorite blog posts so far:

Guest Post: Why I Didn't Celebrate "World Mental Health Day"
Outrageous Preexisting Conditions by amandaw

The first post will be quite familiar to those in the autistic community: "Awareness" campaigns end up dehumanizing disabled people and labeling us burdens to our families and society. The second post discusses how much of the recent outrage over the fact that many insurance companies classify pregnancy and domestic violence as "pre-existing conditions" misses a key point: While it's not right that women in these circumstances are denied insurance, this already happens to all disabled people.

Autism is a Medical Condition?

It seems to me that one of the most fundamental roadblocks which neurodiversity advocates face is the idea that autism is a medical condition.

This idea is accepted as self-evident truth among most autism "professionals," many parents, and even many autistic people. Even many so-called "autism/Asperger's advocates" claim that what we "really need" is for autism to be recognized as a "medical condition." See also John Elder Robison's recent post categorizing autism with "AIDS, diabetes, obesity, cancer, Alzheimer's, MS, [and] heart disease." (NOTE: I don't think that "obesity" in and of itself is a medical condition, either, but for obvious reasons I am focusing on autism right now. I'd also note that Robison's post is full of erroneous and ableist ideas, not all of which I'll be able to fully discuss in this particular post.)

Now, certainly, there are social apparatuses in place which treat autism like a medical condition--for instance, the fact that it is often diagnosed by medical doctors, the vocabulary of "autism treatment" pervades our discourse, etc. I'm not denying that. In fact, while I was trying to come up with a solid definition of "medical condition" for this post, I found all sorts of lists of "medical conditions"--some of which include autism. Even more of them include AD/HD, which is in my view, also not a medical condition. (NOTE: In my view, "medical condition" and "disability" are distinct terms.)

But for all of the available lists of "medical conditions," I couldn't seem to find a coherent definition of what a "medical condition" is. It's like the Supreme Court and pornography--medical professionals can't exactly define it, but they claim to know it when they see it.

So it is for me as well. I personally tend to see the term as most applicable to physical ailments which impede healthy body functions. So is autism really a medical condition?

Robison notes that autism, unlike most of the other conditions he lists, is not "progressive." True enough. But there are numerous other differences:

1. Autism is not fatal if left "untreated." In fact, there aren't really any proven "treatments" for autism at all in the same sense that chemotherapy is proven to reduce cancer (in many cases) and insulin is proven to control diabetes. Some people live their entire lives without knowing they are autistic. And they are not medically affected by this.
2. Autism does not account for deaths or physical illness.
3. Autism in and of itself does not disturb bodily functions such as breathing or digestion or hormone regulation.
4. Perhaps most importantly, autism is defined and diagnosed via behavior--rather than through more objective or scientific criterion. Autism, officially, means social delays, "repetitive behaviors and interests," language delays, etc. All of this is behavioral and educational, not medical.

Additionally, Jim Simclair does a better job than anyone else in explaining why autism is not a medical condition.

Given these key differences, and others, it is entirely inappropriate to classify autism as a "serious medical condition." I am, in fact, rather astounded that someone like Robison--who lived his life for quite a while until a psychologist friend suggested he fit the criteria for AS--can refer to autism as such. He couldn't possibly have had diabetes or cancer or heart disease for decades without knowing about such a condition. The very notion is absurd, and it speaks to the power of the medical industrial complex that Robison can be so easily persuaded to believe that he has "a serious medical condition"--which he apparently lived with with no physical problems for most of his life.

On a teleological level, I'm not sure I'm capable of producing a more coherent view of what a medical condition "really" is, any more than those who write gigantic laundry lists outlining mainstream medical thought and deferring to the DSM on mental and neurological matters. I don't think I could produce a perfect definition of the "medical condition" term. I do, however, think it's clear that autism does not meet the same criteria as other oft-mentioned "medical conditions" such as cancer, diabetes, etc. We can't have a very meaningful discussion about autism and neurodiversity without acknowledging that fact.

While some conditions are both disabilities and medical conditions, the same is not true for autism, and conflating these terms impedes a good faith discussion. Let's call a moratorium on cancer analogies and whatnot.

Robison calls (rather short-sightedly, in my opinion) for greater unity among the "autism community." But how feasible is that when we differ so greatly as to what paradigm we use to conceptualize autism? (i.e. disability under social model vs. medical model) His speculations do not at all address that fundamental divide.

Mr. Robison, there are many of us who simply don't accept your terms of the discourse, and it is rather frustrating for someone of your stature to continually promote such misconceptions.

Frankly, I'm not entirely sure what Robison is even saying. If he's suggesting that people who might otherwise disagree with one another can work together on common issues such as special education, then I agree. But if what he wants is some unified organizational body akin to the the American Heart Association...then, well, I'm not entirely sure what he wants out of this grand, unified, body. I think he'll be waiting a long time for such a body, in any case. As long as he continues to cling to the medical model of autism--at the expense of understanding the social model--he'll be waiting even longer.

Mr. Robison's contention that autism groups aren't "unified" enough is mostly true of Big Autism organizations such as Autism Speaks. Smaller, grassroots-operated groups such as ASAN have been working with other disability organizations all along. Just because we're not holding hands and singing "Kumbaya" with the Wrights doesn't mean we aren't working to form alliances on key advocacy issues.

In fact, I'd say that it is Mr. Robison--with his heavily generalized repudiation of all autism advocacy organizations--is the one refusing to forge alliances.

A few other corrections:

1. To paraphrase Amanda Baggs, even if you could draw meaningful distinctions between autistic people, you can't do that by comparing our political opinions.

The "high-functioning = neurodiversity and "low-functioning = cure" dichotomies which Robison sets up do not accurately represent the heterogenity of thought and dis/ability within the autistic population.

2. Advocacy groups for other (so-called) medical conditions have internal divisions, and Mr. Robison is obviously unfamiliar with the wider history of the disability movement if he thinks otherwise. See, for instance, disabled people fighting against dehumanizing representations of themselves in Jerry Lewis' Muscular Dystrophy Association telethon. See disabled people criticizing Christopher Reed for his single-minded focus on "curing" quadriplegia at the expense of accommodation. See adults with type I diabetes criticizing the Juvenile Diabetes Research Foundation for its focus on children, at the cost of rendering older diabetics invisible. See fat acceptance activists questioning the notion that "obesity is a disease."

Please No...

From Yahoo!: The Department of Homeland Security is studying whether the Wii Fit balance board can help identify potential terrorists. The problem? This--and other similar projects--could end up targeting non-terrorists who simply get anxious in the hell otherwise known as airport security.

I've discussed the problems with flying while autistic before, and I dearly hope that this does not come to pass. The process--with its ever-expanding list of rules and difficult sensory environment--is already traumatic enough for those of us with neurological disabilities. Adding the extra element of screening anxious fliers only adds another potential problem and major stressor--for not only autistics, but many other disabled people as well. TSA (Transportation Security Administration) claims that it is committed to providing people with disabilities a "dignified" and "equal" screening process. My own experiences, and those of other people I know, indicate that they have a long way to go in that regard. The Wii study and similar DHS-funded research projects, however, indicate that consideration of disability-related issues is not a major concern for DHS and TSA. I can only hope that disability rights groups will be involved in the implementation of any new policy, but I won't be holding my breath on this one.

Somehow, the search for terrorists ends up targeting neuro-atypical people. This is truly a shame.

Autism Prevalence Rate Catastrophizing

So the latest news from the CDC is that the autism rate among children is more than 1 in 100. There are certainly very good reasons for skepticism, as the CDC's methodology was pretty poorly conceived, as Joseph of Natural Variation explains. Naturally, such sensible sentiments are not being clearly articulated in the media, and of course the usual suspects (Age of Autism) are using this study to further their own pseudo-scientific, non-autistic-respecting agendas. (In other news, the sun rose in the east this morning.)

What is more troubling are the many more reasonable interpretations of this data, which nonetheless perpetuate neuro-bigotry towards autistic people. I'm specifically talking about The Atlantic's "Behind the Autism Statistics." While in some ways the article provides a nice counter to the autism hysteria, at the same time it contributes to it by continually characterizing autism as A Really Scary, Terrible Disease [sic].

The Atlantic's explanation is hardly scientific, resting largely on anecdote, particularly one family's experiences. The article is correct in pointing out the potential for misdiagnosis, and the fact that a lot of diagnostic gerry-mandering goes on because families want services. But as the author (Jody Becker) discusses these tendencies, she is unabashedly ableist.

But shortly after choosing a clinic and beginning therapy, Erik and Jennie Linthorst realized that while Graham was making some progress, the therapy didn’t seem to be addressing his biggest problems, which involved motor challenges and sensory issues, rather than the kinds of social impairments typical of autism. Applied Behavioral Analysis focuses on repetitive commands and reinforcements to prompt typical developmental and social behavior. But Graham had only a few of the idiosyncratic behaviors – like repetitively spinning wheels and walking on lines on the floor – that are characteristic of many children with classic autism.

So, in other words, it's completely okay for autistic children to be subjected to intensive behavioral treatment focused on eliminating their "idiosyncratic behaviors." But doing it to a child who is "really" normal? Well, that's unconscionable!

And therein lies the ableism. Becker draws an artificial line between those she, parents, and/or the medical establishment consider to be "really autistic" and those "normal" children who just have a few quirky developmental issues. She's fine with stigmatizing the "really autistic" ones as broken and in need of repair, but foisting the label on a "normal" child is apparently a great travesty.

No, actually, the travesty is that autism--and therefore autistic people--are perceived in such doom-and-gloom terms in the first place.

Incidentally, I agree that some doctors may be too quick to diagnose children, particularly young children. (As a well-informed layperson, I have to say that the notion of diagnosing fourteen-month-olds is just utterly ridiculous.) I don't think that any child should have an obviously erroneous diagnosis--though, given how autism is diagnosed, some degree of "misdiagnosis" is inevitable.* And I certainly don't believe that parents of atypically-developing children should be given doom-and-gloom prognoses and intense pressure to pay for expensive behavioral treatments which eat up children's childhoods. No one should be led to believe that their child is doomed if they don't pay $40,000 a year for 40 hour/week ABA therapy for their two-year old. As I've talked about before, the "early intervention or else" myth is really quite damaging. It implies that autistic people can't learn past a certain age or so, and it grossly misrepresents the actual scientific issues.

But I think these principals remain true for all children and parents. Not merely some of them.

Similarly, the "Autistic-Like" documentary trailer suggests that overly focusing on autism literature was an impediment for these parents in figuring out how to best connect with their son. Again, this is a problem with the Autism Industry, which too often treats all autistic people as though we are all the same. I am definitely all for finding out a person's individual style of cognition and communication, with or without a diagnosis. And I do think that diagnosis can sometimes be an impediment to that process, which is incredibly unfortunate. But that is a problem with autism professionals in general. It's not just limited to the "misdiagnosed." We need less one-size-fits-all "autism treatment" in general.

Yes, the more level-headed among us need to point out the many limitations of the CDC's latest figures. But we need to do so responsibly, and without giving in to any of the autism hysteria and demonizing. Because that is the truly dangerous epidemic of our time.

*I refer to "misdiagnosis," but I have a somewhat complicated idea about this. For one, the autism spectrum is socially constructed, and thus is subject to continual re-definitions. In that sense finding out how many people are "really" autistic is kind of like trying to figure out how many people are "really" tall. There are going to be some ambiguities. And, as I've discussed before, a lot of autism un-diagnoses seem to occur simply to remove autism's stigma and not for any beneficial reason.

Link: Comics & Disability

I'd like to link to a fabulous post exploring representations of disability in Iron Man. And I'm not just saying it's fabulous because my boyfriend wrote it. It really is a fascinating look at disability in the media.

Debunking Neanderthal Nonsense: Part I

I've wanted to do this series for a while, though I'm not sure how many posts about it I'll end up writing.

Part I: "Check One" and the Fallacy of Racial Classification

If you've spent any time on Wrong Planet, or a few other message boards for autistics, then you've probably heard of "The Neanderthal Theory of Autism." (This will henceforth be referred to as the Neanderthal hypothesis, however, given that it does not meet the scientific criteria for a theory. I'm not sure I should even refer to it as a hypothesis, as it is not testable, but it seems the best alternative.) In short, the Neanderthal hypothesis holds that the continued existence of autism as a phenotype can be best explained by looking to our evolutionary past, specifically the Neanderthals. According to this hypothesis, we autistics are the descendents of Neanderthals, who had autistic-like traits which enabled them to survive (for a time) in particular environmental conditions. The author of this theory claims that this proves that autistics--or rather, those he classifies as "HFA" or "aspie"--have special talents and skills to offer. While I certainly agree that autistics have valuable abilities, I would question the assertion that this is only true for certain kinds of autistics, and that it is necessary to invoke an imagined evolutionary past in order to "explain" this fact.

What is equally disturbing about this hypothesis is the ways in which it explicitly relies upon theories of racial supremacy. According to this, autism is more common among certain racial groups (whites, Asians), and these groups also have a higher intelligence on average. These outrageous claims put the Neanderthal hypothesis in the same category of a long line of racist pseudo-science attempting to "prove" the existence of racial hierarchies. For this reason alone, I find it incredibly noxious when white autistics propagate this theory, demonstrating little to no understanding of the pertinent social issues.

The author of this theory would claim that it's supported by his data, derived from the Aspie-quiz. I would question the validity of his data, in certain key ways.

Now, I happen to think that the Aspie-quiz (while unfortunately named to be exclusive to many autistics) has numerous virtues. I think it's a better, more comprehensive self-assessment for autism than Simon Baron-Cohen's AQ test. For certain purposes, the Aspie-quiz can be quite useful. I'd recommend it to anyone interested in self-discovery.

But. There are problems with using the Aspie-quiz data to infer generalizations about larger populations--autistics as a whole, certain ethnic groups, etc. One problem is that one person can take the quiz many times and thus skew the data. I know that some iterations of the quiz have controlled for that by asking if the person has taken the quiz before, but the current version has no such control. And this is quite relevant because autistic people like to repeat things. I myself have taken this quiz at least twenty times, and that's a conservative estimate. So, the data is screwy in that way. And, of course, there's also the fact that the data is not collected by random sample, but rather self-referral to the quiz.

There's also another huge, fundamental problem with this method of data collection. The problem begins on the first page of the quiz: Participants are asked to identify their "Recent, main ancestry." And while many options are provided--pretty much the entire range of places where humans have lived, with a great deal of country-based specificity--that isn't terribly useful in light of this one, major problem. Participants can only pick one option.

This is an outdated way of looking at ethnicity. During the past few decades, multiracial activist organizations have done much to bring this problem to public attention. For many people, "picking one" ethnic classification category means picking one side of their family or another. The U.S. census has attempted to rectify this problem by allowing people to check more than one box. Many other forms also allow this system. Other forms simply allow people to check "Multiracial/Other," which makes me roll my eyes a bit. (How does it feel to be "Other"?) But the point is, the Aspie-quiz doesn't acknowledge the possibility of multi-ethnic identity. Participants are forced to "check one."

Which, in the context of the Aspie-quiz, poses a problem even for those of us who don't seem to be multi-ethnic at first glance. How many people--particularly in the United States, but also elsewhere--can narrow their ancestry down to a single country, or even a single region such as "Western Europe"? Not many, I would say. On the surface, my own ethnic identity seems fairly straightforward: I'm an American Jew. But, under the constraints of the Aspie-quiz, I could check at least four different countries in three different general regions. In fact, I'm pretty sure that I have checked all four different countries in that quiz at some point or another. How many others are like me, having ancestors who immigrated from different countries? How many others can recount an even more diverse heritage? I'm guessing a lot.

Moreover, it is quite simply a fact that no one can know his or her full ethnic background beyond a shadow of a doubt. Interethnic sexual relations are nothing new, nor is long-distance migration, though social and historical factors may have made these phenomena more prominent and accelerated their growth. It's quite possible--likely, even--that any one person's ethnic background isn't quite as "European" or "Asian" as they might think.

That brings us to another point, which is that the Aspie-quiz's ethnic categories are, by and large, a construction of the current political world order. A century ago, Jews and Italians were not considered white. A thousand years ago, different groups from Western Europe--even those who lived within the same modern-day nation state--did not consider themselves to be part of one "race." When we're considering the current-day relation to prehistoric times, these facts are not trivial. I'd also note that, as extensive as the Aspie-quiz is in its problematic ethnic classification system, there are still yet more classifications which could be made. Racial categories are not by any means fixed and immutable.

So how can we trust anything the Neanderthal hypothesis has to say about race, when its own data comes from such a flawed model of ethnic identification?