Cat in a Dog's World

How to Erase Racism & Ableism in 5 Easy Steps

2011-03-13T17:59:00.001-07:00

1. Write an article entitled "In Va. assault case, anxious parents recognize 'dark side' of autism."

2. In said article, conveniently minimize the fact that said assault only occurred because a police officer was trying to arrest a Black autistic teen for no damned good reason. After going on a racist tirade. But never mind that--instead, let's frame the article around the "dangers" of autistic people, who are portrayed as irrationally violent and a danger to "the community."

3. Don't bother quoting any actual autistic people. Instead, let's rely on Autism Speaks, family members only, and some random dude who is a Big Brother to an autistic boy.

4. Present with sympathy the idea that a parent was right to call the police on their adult autistic son after he talked a lot about Harry Potter and ran down the street.

5. Let the racist and ableist comments to the story come in.

My heart goes out to Neli Latson, who is clearly the victim of a broken system. There is absolutely no reason why he should be facing ten and a half years in prison, and I dearly hope that there is some way for Neli to get his freedom back. Please visit A Voice for Neli and sign a petition to bring Neli's plight to national media attention and, if you can, donate. Stay alert for updates from Neli's mother Lisa Alexander. Pass the links to A Voice for Neli on.

And in the meantime, think critically about media reports of this event that you see. While it is very important that Neli's situation is widely publicized, articles like the one in the Washington Post are not helpful to Neli and are, in fact, harmful to all autistic people. Let's not mis-diagnose the problems here, folks, which are:

-Cops don't deal well with people with mental/neurological disabilities.
-Many police officers abuse their power quite grossly.
-Black men are still treated as criminals by default by the entire law enforcement system as well as by many Americans. Let's not forget that this catastrophe began when someone decided to call the cops because Neli was sitting on grass outside of a library.

The existence of autistic people is not the problem, despite all of the scare tactics. We exist, and we deserve just treatment under the law and understanding and accommodations for our differences. Not a police state which limits our autonomy, and not a form of "autism awareness" which paints us as dangerous without ever considering our perspectives.

Autistics Passing Project

2011-03-13T16:54:00.000-07:00

One of my favorite bloggers, Amanda Forest Vivian, is doing a project about autistics passing, or trying to do so. It looks to be a really great project, and I encourage people to answer these surveys if they're so inclined, and to pass on the word about it.

Links & Commentary

2011-01-28T11:29:00.000-08:00

Microsoft suspends autistic boy's X-box account for "cheating," which apparently means being too good at gaming.

Oy vey. Not that this kind of ridiculousness is unexpected from Microsoft, but still. I disagree, however, with the implication made by someone quoted in the article claiming that it wouldn't occur to an autistic child to cheat. Uh, no. And as for the commentators who don't think it's possible for an autistic kid to be good at video games? Ha. Ha. And also, ha.

North Carolina Disability rights groups quite rightly object to a new state policy allowing community colleges to refuse admission to applicants deemed "threatening to campus security."

This policy is pretty gross, but sadly not very surprising given the surveillance that neuro-atypical students on college campuses are subjected to. I have to wonder if the Arizona shootings played a role in this. Way to let the terrorists win, guys. This is particularly distressing because community colleges are supposed to be open to everyone, and can be particularly helpful in helping low-income students and/or people with disabilities to access higher education. But in North Carolina the policy of open admissions is now being revoked in favor of the ever-nebulous concept of "security."

New DSM V criteria for autism revealed, including explanation of severity levels.

I think the criteria themselves are better than the previous criteria which was proposed, as well as the current DSM IV, largely because it is so much more specific and therefore less open to misinterpretation. Still far from perfect and does not, I think, really capture all of the major aspects of the autistic experience. And I am really not a fan of the "severity" labels, which I don't think are very useful for describing individuals. The information that someone has, say, a "level two autism diagnosis," doesn't really tell you much about that person as an individual, what their specific challenges and strengths are, etc. I can easily see how this system can be used to put autistic people in particular boxes, with all sorts of consequences, without any regards to individual needs. "Sorry, we don't provide x service to Level One autistics." "A level three autistic cannot be mainstreamed." This could very well happen, and it is scary. I would hate to think that one system of ranking autistic people according to perceived worth and ability is going to be dismantled only to put another, arguably more rigid one, in its place. Why can't we just have individualized diagnoses? Yes, it is "harder" (for diagnosticians, service providers, etc.) but that fact should not prevent autistic people from receiving the best possible services according to individual needs.

I Don't Get It

2011-01-22T14:30:00.001-08:00

How is referring to oneself as "autistic" reducing your entire identity to that? When I call myself a brunette, am I saying that the only important thing about me is my hair color?

The Conversations We Should (and Shouldn't) Be Having

2011-01-16T15:34:00.000-08:00

In the aftermath of the Arizona shootings/assassination attempt, mental illness seems to be something of a hot topic. Yahoo! lists "mental illness" as "trending now," putting it in such illustrious company as Miley Cyrus and Kid Rock.

People are talking about mental illness in light of recent events. But generally, the things which are being said are, far from being helpful and productive, actually contributing to the problem of stigmatizing mental illness. This is true even of many who advance the liberal, "progressive" position.

There seems to be a strong consensus, even among people who generally would not agree with each other, that the tragedy of the Arizona shootings could have been prevented, if only society treated individuals with mental illness differently.

All right. But what, exactly, needs to change?

Some people are straightforward enough in their response: It needs to be easier to forcibly institutionalize people and/or force people into "treatment." See, for instance, this position being advocated by numerous commentators (and the author, by strong implication) here, at NYTimes.com's Motherlode blog, as well as this article which inspired the Motherlode posting. You can always count on Motherlode to bring ableism into any issue, and this is no exception. Still, it's important to note that this is only one example that I might have chosen.

Let's spell out exactly what is being proposed here. People want it to be easier to incarcerate someone who has committed no crimes and force people to ingest medications--many of which have significant side effects and haven't been studied very much long-term--against their will. And this is supposed to improve society.

Well, I suppose this doesn't matter much if you have neurotypical privilege. For those of us who aren't neurotypical, however, these ideas pose a serious threat to what precarious freedoms we have.

There are very many neuro-atypical people around, and very few neuro-atypical people who take part in shootings like the one in Arizona. And yet some people apparently have no problem taking away all of our freedoms in the name of possibly preventing an event which, while undeniably tragic, is also extremely rare.

To use an analogy, it is infinitely more likely that any given person will die or be injured in a car accident than in a shooting. We also know that certain classes of people are far more likely to be in car accidents--young people (especially males), older drivers, SUV owners. Yet we, as a society, do not deem it acceptable to eliminate the freedom to drive, or certain people's freedom to drive, in the name of safety. We have collectively decided that such impositions on freedoms are unacceptable, even if they might prevent death and serious injury.

I do not want to live in a society which limits freedom in the name of security, especially since further limiting the freedoms of neuro-atypical people would hardly eliminate violence--most of which is committed by people who are perfectly "normal." And I am appalled that so many people apparently have no qualms making this trade-off. But I guess when you're not the one who faces possibly being locked up and medicated against your will, it's easy to make these kind of pronouncements about people categorized as Other, and therefore less human, less worthy of rights.

It is also easy to say, "but this person is refusing medications because it's part of zir illness! Ze doesn't think there's anything wrong with zir!" Because you do not get to make that call for someone else, end of story. You do not get to decide that someone else's opinions are illegitimate based on a psychiatric diagnosis, you do not get to disregard people's wishes about their own bodies, and you are not the final arbiter of "what's best." Yes, even if you are related to that person. And I really, really wish this didn't need to be said in 2011.

It's easy to spot the ableism and civil rights concerns in statements which explicitly advocate forced institutionalization and "treatment." There is, however, another strain of argument which also needs to be unpacked.

This is the compassionate, so-called "progressive" position. The position which tries to avoid stigmatizing mental illness (or not), but nevertheless insists that we must use this opportunity to discuss inadequacies of the mental health care system. On the surface of it, this position doesn't sound so bad. But I'm kind of skeeved by it.

Why? I suppose part of it is that I'm inherently suspicious of people using this particular incident to prompt a discussion about access to mental health services...when many of these same people don't appear to give a damn about mental health/disability issues under normal circumstances. Where are all these Concerned People when neuro-atypical people are, for instance, harassed by police officers? When we have trouble finding appropriate employment and housing? I pass many homeless individuals every day, most of whom could probably be classified as neuro-atypical in some way. Where is the concern for them? Where is the concern for the millions of neuro-atypical people who aren't likely to hurt anyone except for themselves? How many of the people now pontificating about The Inadequacies of the Mental Health System spent much time considering mental health issues before the Arizona shootings, or before the Virginia Tech shootings, or whatever? Why does it take a possibly-neuro-atypical person committing an act of horrendous violence for this to become a Hot Issue?

In my more cynical moments, I think it might be because "normal" people are affected when tragedies like these occur. And we can't have that.

There are other problems with the "liberal" position. Namely, we don't know what kind of access Loughner had to mental health services. We can't simply assume that every neuro-atypical person will avail themselves of "treatment" even if it were more affordable. And there are many perfectly legitimate reasons for doing so, not least among them the fact that many of us have had bad experiences with psychiatry and psych meds in the past.

Because that's the other thing. Mental health services, as they currently exist, are far from perfect. This is for reasons both scientific--the brain is an incredibly complex system--and social--frankly, many mental health professionals can be condescending, ableist assholes (and oftentimes racist/sexist/homophobic, etc). It is incredibly presumptuous to state that had Loughner only received "treatment" he never would have killed all these people. There's no way to know that. And perfectly "normal" people commit horrible acts everyday. Yes, there are real issues with mental health access which need to be addressed, but let's not pretend that "treatment" is a cure-all for all violence.

I am in favor of easing access to mental health care--for those who want it--though I am somewhat queasy about using Arizona as a launching pad for this discussion. And there is definitely a need to emphasize the voluntary nature that should ideally characterize mental healthcare. As several people pointed out on this Feministe thread, you can't really talk about these things without acknowledging that for many neuro-atypical people, lack of access isn't the issue so much as being forced into "treatment" involuntarily is.

There are different degrees of coercion. While involuntary commitment is the most extreme and horrendous of coercive practices, it isn't the only one. Telling someone that they must receive a psych evaluation (or "treatment" or whatever) in order to stay in college, as appears to have happened to Loughner, is also a form of coercion, and one which we should work to avoid, not promote. It doesn't even seem to be particularly effective. In Loughner's case, for instance, I think it's more likely that his expulsion from community college (because of his refusal to submit to a psych evaluation) did more to further alienate him and heighten his resentments than anything else. But that's not the primary reason why we need to be careful to not coerce people into treatment. The primary reason is the right to privacy and choice--progressive/feminist values which apparently don't exist for neuro-atypical people. But they need to.

These issues are, I think, most pronounced on places like a college campus, simply by virtue of the fact that a college is a discrete community in a way in which most other units of organization (cities, states) are not. There are perhaps other kinds of similar communities, but I am going to focus on colleges because that's where my knowledge and experience lies, it seems relevant to the Loughner case, and colleges have been particularly scrutinized in the wake of the Virgina Tech shootings.

To put it bluntly, being a neuro-atypical college student in today's society sucks. Thanks to the demonization of neuro-atypical people that happens every day, particularly after tragedies like Virginia Tech, neuro-atypical students often find ourselves subjected to surveillance from other students and staff simply because we behave differently. Not because we have actually harmed another individual, but because we can seem strange and scary to the "normal" folk. It happened to me. I was identified as crazy by my hallmates at various times during my undergraduate career, and it got to the point where everything I did in public (and oftentimes in private) was interpreted through the lens of my perceived abnormality and instability. Oftentimes the problem got started because I do have meltdowns (in private, usually), which I recognize can be scary to someone who overhears, but it got to the point where perfectly innocuous behaviors were being interpreted as pathological. I am not exaggerating when I say that people reported to the Dean of Students about the ways in which I walked and closed my door. I wish that I was.

Why did people do this? I suppose some of them were genuinely concerned for me, even if their methods were completely off. Others, I suspect, were scared of me, even though I had never said a single word to any of them. But the trope of the scary crazy person who is going to come and kill you in your sleep is a socially powerful one, so powerful that neuro-atypical folks who have never laid hand on or said a threatening word to anyone are subjected to a kind of surveillance.

That is truly fucking scary.

My experiences aren't particularly unusual. I suggest reading this story about a man who was essentially kicked out of medical school because he had the audacity to be depressed and Asian-American in the period after the Virginia Tech shootings.

What does all of this have to do with the Better Mental Health Services argument? Quite a lot. See, the kind of rhetoric about "not letting people slip through the cracks" is exactly the kind of thinking which leads to neuro-atypical people being subjected to surveillance and coercion in a variety of situations. Good intentions don't necessarily matter one whit. So before making a "compassionate" plea to "keep people from slipping through the cracks," please please please take time to consider how this is going to happen. If it involves subjecting some people to increased surveillance, rethink this plan.

Eliminating stigma surrounding mental illness really is the central issue here. Yet many well-intentioned people are actually contributing to it in seemingly "liberal" and "compassionate" ways.

That, I suppose, is the main reason why I recoil from Using the Tragedy to Discuss Lack of Access to Mental Health Services. Because associating the two simply adds to the stigma. And we already have more than enough of that.

Be a part of the solution, not the problem.

This Is Also Not Okay

2011-01-09T14:47:00.000-08:00

When back-pedaling from blaming violence on mental illness, it is common to divide and conquer. "Oh, no, I didn't mean all people with mental illness, just people with ____" (Usually the blank is filled with schizophrenia and/or bipolar. But I've also seen other diagnoses, including PTSD, come up in these kinds of discussions.)

This is also not okay. Narrowing the group of people against whom you are stereotyping does not make the words any less discriminatory.

Everyone Needs to Read This Article

2011-01-09T12:32:00.001-08:00

About the social tendency to write violent criminals off as being "just crazy."

Comments, unfortunately, are a mess.

Diagnostic Line-Drawing

2011-01-07T10:12:00.000-08:00

Continuing my discussion on Allen Frances, the DSM, and Asperger's diagnosis controversy.

Dr. Frances' contention that autism/Asperger's is "over-diagnosed" is hardly unique to him. It can be heard all over the place, echoed by everyone from medical professionals to educators to talkshow hosts (Michael Savage) to average Joes.

The problem with this contention is that to claim that something is over-diagnosed implies that there is one true, proper rate of diagnosis. And that ain't so. Even for many physical conditions, doctors wrangle over how to define the boundaries of a diagnosis. This is true for type II diabetes, for instance. At what point does a particular lab value cross the line of standard deviation and become abnormal? For a complex, multi-faceted neurological condition such as autism, these issues are compounded much, much more.

One problem with the "over-diagnosis" narrative is that it typically does not consider the needs of diagnosed people (or people who may qualify for a diagnosis) ourselves. Instead, the arguments against over-diagnosis tend to be as follows:

1. It's costing too much money (to schools, service providers, insurance companies, etc.).
2. It's a tool of the pharmaceutical companies.
3. Some people who are diagnosed are people whom I (the speaker) consider to be normal, if maybe a bit quirky/shy/introverted/etc. The diagnosis should be limited to those whom I consider to be abnormal, diseased, wrong.

So let's take apart these arguments one by one. Number 1 clearly is more concerned with economics than science or people's needs. Number 2 may have some merit when applied to other conditions, but is clearly somewhat farcical when applied to autism. And as for 3? Well, that's ableist tripe of the first order. On the surface, this argument may seem enticing, as it would move some people from the "disordered" category to the "normal." In reality, this argument is particularly pernicious precisely because it further Others and stigmatizes a subset of the group--you know, the ones which are really disordered, in someone's arbitrary opinion. Talk about further constructing hierarchies of worth.

Obviously, diagnosis necessitates some form of line-drawing, most likely of the arbitrary variety. (This is one reason why I think the inclusion of Broader Autism Phenotype in the DSM is a good thing.) But any kind of line-drawing that further contributes to stigmatization and dehumanization is not one which I can, in any way, endorse.

The creation of diagnostic categories, as I have said repeatedly, needs to center on actual people's needs. The question is not, What is the Platonic Ideal of autism diagnosis rates? Rather, we need to ask how we can best define autism criteria which:

a) More accurately defines the experience of being autistic and the full range of possible autistic impairments. This means forgoing the notion that autism is only, or even primarily, a social/communication impairment. This also means forgoing stereotypes--"autistic people never have friends/desire physical contact/have a job, etc."

and b) Provides tangible benefits to those who might be accurately classified as autistic. This does not just include services. For many, particularly adults, services just aren't there in the first place. Self-understanding is invaluable to many autistic adults who are diagnosed later in life. This is important! I've heard autistic adults report that a professional has told them, "well, you qualify for a diagnosis, but what good will it do you now?" Bullshit. Knowing one's neurotype can be of invaluable help when navigating an autie-unfriendly world and in making sense of one's past. A diagnosis may also help obtain accommodations in the workplace or at school. This is what's important, not satisfying someone's idiosyncratic notion of how many people ought to be diagnosed and what normality is.

Obvious News Is Obvious

2011-01-01T17:16:00.000-08:00

So an NPR article/segment about the DSM has been making the rounds. I thought I'd discuss a few particular points which stood out to me as particularly egregious.

A study was done to figure out how common Asperger's was, and the results were clear: It was vanishingly rare. Then Frances put it in the DSM, and the number of kids diagnosed with the disorder exploded. Frances remembers sitting in his condo reading articles about this new epidemic of Asperger's that was sweeping the nation.

"At that point I did an 'oops,' " he says. "This is a complete misunderstanding. It was distressing. Quite distressing."

So, before Asperger's was an official DSM diagnosis, diagnoses were "vanishingly rare." Then, after the diagnosis is added, the number of diagnoses "exploded." Wow, who would have thought!

Seriously, I find Frances' argument and "distress" rather odd. What, exactly, did he think would happen? Why on earth did he and the other DSM IV authors include the Asperger's diagnosis if they did not want and expect people to be diagnosed with it? This makes less than zero sense.

And while Frances is correct, I think, in pointing out that obtaining services and accommodations is a major impetus for many parents seeking a diagnosis for their child, his view of the situation seems quite divorced from reality.

"In order to get specialized services, often one-to-one education, a child must have a diagnosis of Asperger's or some other autistic disorder," he says.

"And so kids who previously might have been considered on the boundary, eccentric, socially shy, but bright and doing well in school would mainstream [into] regular classes," Frances says. "Now if they get the diagnosis of Asperger's disorder, [they] get into a special program where they may get $50,000 a year worth of educational services."

I'm sure all of the parents who have spent inordinate amounts of time advocating for their autistic children to get an equal education will be surprised to hear that an autism spectrum diagnosis is an automatic ticket to a "special program," one-on-one education, and $50,000 of services. Really, where does this happen, exactly? For Frances to make such an off-the-cuff statement which so grossly misrepresents the reality of special education services and funding is incredibly irresponsible. This kind of misinformation contributes to the scapegoating of people with disabilities. Yes, public schools are often inadequate for all children. No, that is not the fault of children with disabilities, or their parents, or even those who write the DSM.

Frances' contention that a child needs an autism spectrum diagnosis to receive disability services is an even greater whopper. Special education services are not just for autistic people, seriously. In fact, most students who receive accommodations and/or services do not have autism diagnoses, but instead are diagnosed with AD/HD, dyslexia, or any number of other disabilities. But in Frances' world, special education students without autism diagnoses apparently don't exist. (??!!) Once we examine the real world, Frances' contention that Asperger's is over-diagnosed for reasons of special education funding starts to look rather silly. While it is true that diagnosis often does influence the services which someone receives--one reason why collapsing all autism spectrum diagnostic labels is a good thing--Frances' arguments are so at odds with reality that it is hard to take him seriously. Frances may be the author of the DSM Asperger's criteria, but that doesn't make him an indisputable authority on the subject. I wish NPR hadn't treated him as such. Why did NPR not talk with people who actually have Asperger's diagnoses?

While it is, perhaps, a step in the right direction for psychiatrists and psychologists to consider the social implications of the DSM, these kinds of assessments can't be done based on half-facts and misconceptions. The needs of people who fall within a particular diagnostic category must always be the top priority.

Consideration of the stigma of particular diagnoses is also an important consideration for DSM authors, but I really dislike the particular way of framing it which holds that it's okay to stigmatize some people but not others. Perhaps all of this time spent whinging on over-diagnosis might be better spent recognizing the arbitrariness of "normality," and working to dismantle the stigmatization that those with DSM diagnoses face. Arbitrarily labeling some people as being worthy of normality (and thus "misdiagnosed" or whatever) isn't enough.

Liberal Ableism: Big Pharma Conspiracy Edition

2010-12-23T21:13:00.000-08:00

I've long since stopped being surprised by liberal ableism, but that doesn't mean it doesn't irritate the hell out of me. So I'd like to devote a post to one common form of liberal ableism: the Big Pharma conspiracy theory.

The autism/vaccine conspiracy "theory" (I use the term very loosely) is arguably a subset of Big Pharma Conspiacy Theory Ableism, though admittedly not all who espouse this view are self-identified liberals. That topic, however, deserves more specific attention than I can give it here. This post is about a more generic ableism that one hears all too frequently in supposedly liberal critiques of the pharmaceutical industry. My intention in this post is not to defend the business practices of the pharmaceutical industry. The fact that health is a matter of profit is an absolute abomination. But that doesn't let liberals off the hook for being ableist in their critiques of corporations and the healthcare system.

To hear some (usually non-disabled) liberals tell it, almost all Big Pharma products are largely evil and/or unnecessary. Why, if we would all just eat x diet, use x, y, and z vitamins and herbal remedies, and exercise so many hours a day, we would all be perfectly healthy (able-bodied, neurotypical) and have little or no need of pharmaceuticals!* It's those damned evil corporations which are causing most of our health problems in the first place! They're deliberately not curing diseases! They just want to make us dependent on their products! Uh-huh.

This kind of dismissive thinking ignores the fact that many people do in fact require medication for their everyday comfort and survival. There is nothing inherently tragic about taking medications daily. Presumably TABs who recoil in horror at the thought of taking pharmaceuticals daily don't think that taking their vitamins or brushing their teeth is some huge tragedy.

Now most people will probably concede the necessity of pharmaceuticals with regards to medication for many physical illness, such as insulin for diabetes (though that often doesn't stop them from being ableist as hell in their statements and attitudes). But with many other disabilities, things get trickier. While many people with physical disabilities face dismissive attitudes--people are particularly prone to scoff at fibromyalgia and Chronic Fatigue Syndrome as "fake illnesses"--this is especially apparent in the realm of mental/neurological conditions.

As a case in point, I give you a recent Jezebel article, "Why Are All Our College Kids Going Crazy?"

While I also have several issues with the New York Times article that the Jezebel post reported on, there's more than enough to unpack in the Jezebel article alone. Starting with the awful, awful title.

Yes, folks, "crazy" is an ableist term, and self-proclaimed liberals should damned well know better than to use it in reference to people with mental health conditions. Some neuro-atypical people use the word to refer to ourselves in a reclamatory way, and that's okay. But if you've never faced ableist oppression as a result of being non-neurotypical, you don't get to use that word to describe people who have. Absolutely not. And referring to us as "Fucked Up," or "Clinically Fucked Up," as the author of this post does, is no less problematic.

But the language of the post isn't the only, or even necessarily the biggest, problem with it. The problem is that the post and the comments betray an abysmal understanding of mental health issues in the name of promoting a conspiracy theory which doesn't even make any damned sense. (Jezebel's idea is that Wal-Mart is to blame for the increase of college students utilizing mental health services.)

If the meds are so effective then why would all the kids on them be right back in the counseling centers?

Yes, because apparently psychiatric medications aren't effective unless they are able to solve every single problem perfectly. If someone still needs counseling in addition to medication, clearly the medication has had no effect whatsoever. This is Jezebel's "logic," and what a load of bullshit it is. Look, I have Major Issues with the way in which psych meds are presented in the original Times article, too. I don't think we should be presenting meds, and certainly not any particular med, as a magical cure-all for particular mental health conditions. Human brains and bodies are incredibly varied in ways which psychiatry doesn't yet understand. This does not, however, mean that all psychiatric meds are completely useless for everyone, or that a particular med isn't effective unless an individual doesn't want or need any counseling at all. The idea is preposterous, and frankly it seems to me as though this author has little if any personal experience in dealing with mental health issues.

In any case, Jezebel is promoting the stigma against seeking any kind of help for mental health issues, whether it be medication or counseling. These kinds of attitudes are all too prevalent in our society, and certainly do prevent people from seeking help which could be beneficial. For those of us who already have mental/neurological diagnoses and use mental health services, these kinds of attitudes serve to further marginalize us, making us all the more reluctant to disclose our disabilities to the people whom we encounter. I remember when I first saw a counselor at the age of ten, after my school told my parents that they needed to get me counseling. I remember feeling profoundly shamed at having to go to counseling sessions. Jezebel is perpetuating the kind of internalized ableism that many people with mental health conditions face when seeking help.

None of this is to say that Big Pharma is great, meds are always the answer, or that all psychiatrists are completely wonderful and trustworthy. There are serious problems with the current system, and it's definitely worth talking about. I know too many people, including my partner, who have been harmed by over-zealous psychiatrists who over-prescribe potentially dangerous psych meds.

When it comes to psych meds, I am pro-informed choice. People should be able be active participants in their mental health care and make decisions based on thorough, unbiased information about potential side-effects, and should always have the option of stopping meds without being labeled "non-compliant" or another derogatory term. People should also be able to use psych meds without fear of being stigmatized and brushed off as Big Pharma's dupes. Other people's mental health diagnoses and medical choices shouldn't be open to public commentary. Even comments which seem extremely general, such as "ADD is over-diagnosed" or "the pharmaceutical industry is making everyone think they have mental illness" often are a commentary on individual people and their situations. We should never lose sight of that.

I don't know very much about the relationship between Wal-Mart and university pharmacies. I do, however, as a consumer of mental health services and psych meds, think that Jezebel is very much barking up the wrong tree. When I go to my university's counseling center, I am not bombarded by pharmaceutical ads every which way. I am not offered free samples of a particular medication. As a result, I trust the psychiatrist I see through my student health services far more than I do someone I might see privately. So why is Jezebel so hung up on the Wal-Mart/college pharmacy conspiracy theory? This theory is not only ableist, as Jezebel expressed it, but it also doesn't make very much sense. But I think it's pretty clear that Jezebel is not interested in having an honest discussion about psych meds and mental health issues so much as it is taking pot shots at Wal-Mart and us "crazies."

Shame on them, and on any other "progressive" who would dehumanize people with disabilities and trivializing the difficult choices we make in order to push a conspiratorial agenda. Yes, there is much to criticize about the pharmaceutical industry. No, it is not necessary to label people with mental/neurological impairments as fakers, dupes, and crazies while making these critiques.

*The fact that many people can't do these things because of class, disability, and time constraints is generally overlooked by the privileged people who espouse these kinds of beliefs.

PWD and TSA

2010-11-26T20:00:00.000-08:00

Due to recent events regarding one of my passions--accessibility for people with disabilities and airport security--I'm resuming blogging for a little while, at least.

As someone who has been concerned about this issue long before it became the topic du jour, I am glad that the public and media is finally paying some attention to the harms of airport security in the U.S. It is incredibly unfortunate, however, that it has taken such an extreme turn of events for people to finally sit up, pay attention, and start questioning a system that would deprive all of us of our civil liberties in the name of "safety."

I feel it is particularly important for me to address this, because I have previously, on this blog, made some supportive statements about the new X-ray machines. After hearing all of the horror stories of the past few months, however, from people with and without disabilities, I am rather embarrassed by this support, even if qualified and tepid. Part of this was due to a lack of information; part due to a failure to fully consider how this might affect people with disabilities which differ from my own. It is now clear that the body scanners--and the accompanying system of "enhanced pat-downs"--is terrible for people in general, and people with disabilities in particular.

I have not flown since the new system has been put in place (though I will soon). But even before pat-downs became "enhanced," I found them to be quite unpleasant at best and very upsetting at worst. I do not like people who I don't know very well touching me at all. It can be quite panic-inducing. While I have had several accessibility issues with TSA officers, the one particular incident which inspired my passion about this particular issue was a pat-down I received a little more than two years ago. This particular officer who patted me down did so in a rather rough manner and treated me in a way which I considered quite harsh and frankly rude. I was extremely upset and anxious when I was pulled over "randomly" to receive additional screening. I wanted to have the option to hold my partner's hand for comfort, but he wasn't allowed to stand within five (I think) feet of me. The TSA officer said that if I wanted him any closer, he would have to be patted down as well. Because apparently they think it's possible for me to sneak a bomb to him by holding his hand...or something. Since my partner is also autistic, I did not him to also be subjected to this treatment as well. I found the whole experience traumatizing and don't remember what happened very well, but I do think that at some point I moved towards him for comfort only to be verbally rebuked and physically (wo)man-handled by the TSA officer. Since then I've been highly wary of the pat-down procedures.

So, it was through this lens that I first considered the issue of the new body scanners. From information I'd heard from TSA administrators, I thought that the body scanners would reduce the need for physical pat-downs. Little did I know that TSA would use the new technology as an excuse to conduct more invasive pat-downs! It is obscene, especially when one considers that many people with disabilities don't have any "choice" at all. If someone is unable to stand independently for ten seconds with their arms up, or if one wears any number of medical devices or prostheses...there is no "choice." (And no, for many people, "don't fly" is not a realistic choice.) There is, additionally, reason for concern about the radiation from the body scanners, particularly for cancer survivors and people who have a genetic predisposition to cancer. It is now pretty clear that body scanners, far from being a panacea, are making things worse. And people with disabilities are being affected disproportionately.

As an autistic person, I found the "regular" pat-down procedure upsetting enough. Do I now have to worry about a stranger touching me under my shirt--or underpants--when I fly? The thought is nerve-wrecking.

At least previous regulations--however reactionary and ridiculous at times--were generally justified due to actual events. But this? These regulations are not the direct result of any particular attempt at a terrorist attack. In fact, if we stop thinking of risk only in terms of potential terrorist attacks, I think it's pretty clear that the new policies present risks of their own. What about the risk incurred by the person who is forced to remove a prosthesis, or another device, in the middle of the airport, even if doing so will be unsanitary and unsafe? What about the risk incurred by the sexual assault survivor who is forced to relive hir trauma? What about the risk incurred by the TSA officers themselves who will now be in closer contact with other people's bodily fluids? (Menstruation, anyone?)

I don't believe that TSA officers are necessarily any worse than the general population in terms of ethics, but it is an unfortunate truth that many people enjoy and abuse power. It is too easy for an officer to forget about basic human compassion when they put on that uniform. That seems to have been the case for the officer who treated me harshly during the pat-down two years ago. And I don't think she's the only one.

In order to avoid the enhanced pat-down, I am planning to opt for the scanner when I fly next month and hope that this will be enough to avoid the pat-downs, as well as any negative effects or humiliation as a result of the scanners. But then, I'm cissexual and don't have to worry about being mocked for my genitalia. I do not have a family history of cancer to worry about. I don't have a disability which prevents me from going through the scanner. And as a white woman, I'm not seen as a threat. While I do frequently get labeled as "crazy" in these kinds of stressful situations, even crazy white women aren't seen as threats in the same way as people of color are (many of whom face ableism as well).

The system is truly horrid for everyone, but some people clearly are less privileged than others. TSA policies clearly center able-bodiedness and neurotypicality and always have. I'm tired of hearing that people with disabilities are somehow "special cases," that we should just suck it up for the general good. No. This is the kind of shit which happens when our needs are seen as a mere afterthought (if that). And it needs to be loudly and vigorously opposed.

For comprehensive coverage of the failures of the new airport security system, I highly recommend Shakesville's recent archives.

Dreamwidth Code?

2010-07-22T14:24:00.003-07:00

A request to readers: does anyone have a Dreamwidth code that they can send me? I'd really like to get a journal there.

Edited to add: I have one now, thanks to reader Iseryn. Thanks, Iseryn! I now have an account as allies_person. (The username refers to my lovely feline companion.) I invite readers to add me, though for now I think I'd prefer only to allow people I already know and trust access to my journal. I am really, really sorry to be exclusive like that, but I kind of feel I have to be in order to feel any sense of comfort and security. If you don't have a Dreamwidth account, you can add me through Open ID.

I'm not sure what will happen to this blog, to be honest. I'm feeling very upset and disillusioned with the blogging world right now, and it's not enjoyable to me anymore. All of the infighting and bullying and sides is too much for me.

Where Ableism Leads

2010-07-21T20:30:00.000-07:00

I really, really hate having to write these kinds of posts, but I can't not.

This is where hatred leads. A woman in Texas is believed to have strangled her two autistic children. In her words:

They are both not normal, not normal. They are autistic. Both are autistic. I don't want my kids to be like that. I don't want, I want normal kids," said the woman. "First, I tried to give them bathroom cleaner. I put in their mouth, but they don't drink it. I want them to drink, but they don't drink it.

This is the kind of rhetoric that our mainstream autism advocacy organizations give us. Maybe they don't always put it in such naked terms, but the underlying feeling of entitlement to a "normal" child, and the feelings of victimization upon having an autistic child, is a staple of autism rhetoric. This kind of rhetoric really is dangerous.

This is the reason why hateful representations from well-meaning people and organizations need to be firmly opposed.

Watch this Video

2010-07-13T11:59:00.001-07:00

If you watch any online video this week (or month), I highly recommend that it be "Grading People," a video about how dehumanizing it is to grade autistic people (and others) into "high-" and "low-" functioning categories. It's edifying, historically informed, and sadly horrifying. Captions are provided.

Posts about Autreat and other things will (hopefully) be incoming. I'm quite busy and exhausted right now.

Autreat 2010: Presentations

2010-07-03T18:24:00.000-07:00

Part I: Thoughts on the Presentations

Early this morning, I returned from Autreat 2010. This was the second Autreat that I've attended, and I'd like to share some of my thoughts on the experience. This first part will cover the formal presentations, particularly the presentation on airport security, which has become something of a pet issue for this blog.

The presentations were excellent. I was able to attend part of all but the presentation from Amanda Baggs, Morton Gernsbacher, and Drew Goldsmith. Unfortunately, I fell asleep in my room before the beginning of the presentation and it was all but over by the time I managed to wake up. As I was quite looking forward to the presentation, this was disappointing.

Jim Sinclair's talk about belonging and community was excellent; I don't think I can really do an adequate job of describing it, so I won't attempt it. I'll just say that ou is a very astute observer of both autistic and non-autistic social dynamics. The people who say that we are always completely clueless when it comes to social interactions are full of shit.

Susan Golubock's presentation on executive functioning was helpful and informative. I now have some new ideas for strategies and assistive devices to try out to make life run a little more smoothly.

And, of course, Ari Ne'eman's presentation on prejudice against autistic people was great--historically informed, social justice-oriented from start to finish, and truly inspiring. Full disclosure: Ari and I are friends. But I'm pretty sure I would have loved it regardless. While the lecture title, "How They Hate Us," is fairly depressing, and some of the examples of anti-autistic prejudices discussed by Ari and various audience members were rage-inducing indeed, the talk managed to instill hope anyway. I was left with a renewed sense of purpose and determination. We're going to change the world here, folks, one hand-flap at a time.

I was also delighted to see Rhonda Basha's presentation on airport security. I have been a pretty outspoken critic of the Transportation Security Administration (TSA) on this blog. One of my earliest blog entries here was about the difficulties of flying while autistic, and this post included some pointed critiques about how autistic-unfriendly the security procedures are. I actually wrote the post in response to being treated like shit by a TSA agent on my way back from my first Autreat, two years ago. So it was great to see someone from TSA actually coming to Autreat and discussing these issues with autistic people. This is one issue where I can actually see some tangible results of my blogging, and I'm glad that so many autistic people were able to talk with Ms. Basha, who is head of the Office of Disability Policy and Outreach at TSA. While it's unlikely that the procedures will be completely autie-friendly any time soon, it is wonderful to see this dialogue happening at all. Ms. Basha provided several useful tips that I will be keeping in mind for future travels. (As there were no lines or problems at the airport leaving Autreat, I didn't have to utilize any of the strategies suggested on the return trip.)

As a result of some of the explanations Ms. Basha provided, I have altered my position on new airport security technologies somewhat. I now see that there are advantages to the full-body scanners which are being implemented in the U.S. I am okay with the use of this technology so long is entirely voluntarily. It seems as though passengers will be given the option to choose between the body scanner and the traditional pat-down, and this is a good thing for many autistic people. Like a lot of other spectrum people, I'm hypersensitive to touch. I would much prefer going through this machine than be touched by an unfamiliar security agent. This technology is also more accessible to many PWD who cannot use the current metal detectors at all (i.e. people with pacemakers). As long as walking through such a machine is entirely voluntarily, and the privacy procedures are in fact strictly adhered to, I think these machines are actually a step in the right direction, given everything else.

The body scanners are not accessible to all PWD, and that is of course a problem. People who use prostheses or wheelchairs, or who have medical implants, probably won't be able to use the machines. But since people in these groups generally can't use the current metal detectors either, the new machines probably won't make security any less accessible than it already is. As I do not currently have any physical impairments myself, I am speaking from a position of privilege and could very well be wrong about some of this. (Please do tell me if I am!)

Someone in the audience asked, quite astutely, about access issues for people who are both wheelchair users and hypersensitive to touch. There aren't any easy answers to this question, unfortunately, at least as long as the world is in love with the airport security industrial complex. But the fact that the body scanners are not universally accessible, IMHO, is not a particularly good reason to oppose them altogether. Unfortunately airport security will continue to be inaccessible to many people with physical disabilities regardless of whether the scanners are used or not. The scanners can, however, make airport security more accessible to many other people with disabilities, myself included.

So that's a brief summation of some of the things which caught my attention during the presentations. There were quite a few excellent presentations which I didn't mention, but this post is already running very long and I'm rather short on energy after all of the travel and sleep deprivation of the past six days.

Coming next: discussion of social life at Autreat--the main reason why most of us go!

Autreat & A Brief Note

2010-06-23T17:43:00.000-07:00

Apologies for the lack of posting. I don't even have much of an excuse, really, as I haven't had much to do the past two weeks.

I did want to let readers know that I'll be at Autreat this year. Are any readers also attending?

Racism and Ableism on Display

2010-06-17T19:19:00.001-07:00

A teenager is currently under arrest in a psych ward for having committed the "crime" of sitting on grass at a library while being Black and autistic. (This is after being in actual jail for 11 days.) Read the story and sign a petition demanding media coverage of this outrageous injustice, dear readers, please. I'm not entirely sure how effective these actions are, but I'll post again if something else comes up.

Shit like this is a lesson in white privilege. I've had some bad experiences with regards to being misinterpreted, to be sure, but as a white woman, I'm not in the "threatening" category.

Meet the "New" Autism Speaks

2010-06-04T13:21:00.001-07:00

Some people have suggested that the appointment of John Elder Robison to Autism Speaks' Scientific Advisory Board* may mark a shift for the organization. Obviously it's still very early, but let's consider some early evidence from the blogosphere.

Robison has blogged a fair bit about autism research lately, so I'll use that as a starting point. I agree with him on some things. For instance, a comprehensive study of autistic adults throughout the lifespan sounds like something that is probably worth supporting. (I don't know the particulars about the research or researcher, and so I won't venture say anything more than that.)

But other research projects that Robison has been blogging about strike me as problematic. Take, for instance, this post lauding some new Autism-Speaks grants. Basically, it seems to me more of the same: research pushing for earlier identification, insistence on the centrality of "early intervention," etc. What does this do for autistic people right now? I note that autistic children are already being identified at earlier and earlier ages. Why is it so vital that we keep pushing the age down? Does it really matter that much if we identify an autistic child at 22 months as opposed to 28 or 29 [months] for instance? I'm not convinced, and the endless repetition of the "early intervention" mantra is not a substitute for actual science which is willing to question supposed "truths." Nor does this kind of research truly deserve, IMHO, the amount of money it is receiving. Where are the supports for older autistic people, as researchers rush to "identify" earlier and earlier?

Even more problematic is Robison's recent post defending genetic research in autism. In this post, Robison proceeds from the assumption that autism is something which ought to be prevented, and doesn't everyone think that? It's sort of like cancer, an analogy which Robison makes. He writes,

Some of the best-known examples of this work can already be seen in the grocery store, or the hardware store. Just look at the label warnings that tell you repeated exposure to a certain chemical causes cancer. We see those warning labels on packages everywhere. We identify cancer-causing chemicals by exposing mice to a particular compound and seeing if they develop cancer. In the autism world, researchers have looked at exposure to high levels of lead, mercury, and other chemicals to learn how they affect the developing or developed mouse brain.

One day, thanks to this sort of research, we might have labels that say, “Warning - Exposure to xxxx can cause autism.” There may indeed be environmental toxins that trigger autistic regression in people, and there may be chemicals that make autism like mine worse. If I knew what they were I’d be sure to avoid them – any of us would – but science needs to identify them first.

Robison skirts over the issue of a prenatal test.

I agree, incidentally, that autism--like practically other condition or trait--has both genetic and environmental components. But why the assumption that this is caused by human-made chemical products? Environmental "triggers" (if that's the word you want to use) are literally everywhere. What reason do we have to assume that it's Something Dangerous that is Damaging us? I know Robison isn't an anti-vaxxer, but this rhetoric is dangerously close to some of what the Age of Autism crowd promotes. And again, this research has very little chance of helping autistic people right now. Robison's idea of autistic people getting "worse" (urgh) from exposure to household chemicals is far-fetched, to say the least. A far more pressing problem, I would say, is the over-medication of autistic people from psychiatrists and doctors who are trying to "help" us.** Is Autism Speaks going to fund a study on that any time soon? Or are they only interested in research that marks us as aberrant and defective?

Given these posts, I have serious doubts that Robison is going to steer Autism Speaks in a different and better direction. It rather seems to me that Robison is, in many ways, adapting the party line instead. It's very disappointing.

As to Autism Speaks' media representations of autistic people? I'm afraid I don't see any positive signs there, either. The organization now has a blog with a section entitled "In Their Own Words." [Warning: links to Autism Speaks] Does this mean they're giving autistic people a voice? Hardly. Virtually all of this section contains stories by or about non-autistic family members. Autism Speaks is, as usual, appropriating autistic people's voices by claiming to represent us.

A particularly egregious example comes today, with a "poem" (I use the term loosely) entitled "The Voice Unheard." The title alone is cringe-worthy, and the poem itself is even worse. Of course, the poem doesn't actually present a voice that is unheard. Rather, it is the sister of an autistic teenage boy writing from his perspective as imagined by her. Do we even need to get into why this is a problem?

The poem's content isn't much better, describing autistic people as having "infected minds." While the poem does state, correctly, that "autism isn't like cancer," this is only in the context of lamenting the lack of a cure:

Autism isn’t like cancer
There’s no cure
Or solution found
Only drugs and medication
To try and calm us down
But I am lucky to have a family
That loves me so much
They make sure I’m taken care of
And do everything they must

Note the pharmaceutical-pushing here**, as well as the inevitable trope of "autism-family-as-saints." The author of this poem is only fifteen, so I am trying to be somewhat less harsh than I ordinarily would be. But this kind of ableism deserves dissection, even when it is perpetuated by minors. And especially when it is perpetuated by financially and culturally powerful autism "charities."

Short version of this post: Meet the new Autism Speaks, same as the old Autism Speaks.

*Note that he is appointed only to the 30-person scientific advisory board, and not the actual board of trustees.

**I am not against any and all usages of psychotropic medications--far from it. I do, however, have serious concerns about how autistic people and other neuro-atypical folks are often treated by the medical profession, particularly with neuroleptics. There are too many of us who have been seriously harmed by these medications, and there are far too many doctors willing to demand that people deemed to have unacceptable minds (usually this means labeled with autism, bipolar, or schizophrenia) take these dangerous medications, often in very high dosages. Neuroleptics haven't even been tested for safety in children, yet are routinely prescribed for autistic children and others.

I am entirely in favor of informed choice when it comes to psychotropic medications. But the system we have right now doesn't often allow for informed choice (or, indeed, choice at all).

So Typical

2010-05-26T17:21:00.000-07:00

CNN runs a story about the autism storyline in Parenthood. There are quotes from show producer Jason Katims (parent of an autistic child), one pseudonymous CNN reader (parent of an autistic child), executive producer of Autism Speaks Peter Bell, another pseudonymous commentator (connection to autism not clear), and blogger Angela Timpone (mother of autistic child).

Gee, I wonder whose perspectives are missing....

Divorce Rate Shocker

2010-05-19T18:26:00.000-07:00

Remember how a certain autism organization made a fear-mongering video claim that 80% of parents with an autism diagnosis are divorced? Well, that turns out to be a load of crap. Shocking, I know.

I have an autistic friend whose parents divorced within the past few years. Naturally, this is quite upsetting. The fear-mongerers would have my friend believe that it is his fault that his parents divorced. This is unacceptable and utterly infuriating. I believe the psychological literature on divorce generally indicates that many children tend to blame themselves for their parents' divorce, regardless. Unfortunately, unscrupulous and unscientific organizations seem to have no qualms about adding to those feelings of guilt for autistic children in particular.

Skeptics and scientifically-oriented people have long questioned the origins of that 80% statistic, and promotion of this statistic has always been irresponsible at best. Now, these organizations have no excuse.

This study needs to be read by every autism organization and major media outlet in the country.

Liveblogging Parenthood

2010-05-18T23:01:00.000-07:00

In "honor" of tonight's hour-long Autism Speaks commercial on NBC...oh, wait, I mean, tonight's episode of Parenthood, I thought I would foray a bit into liveblogging. I recorded some of my thoughts as I was watching the show, and I present them to you now (almost) unedited. Not the most profound thing I've ever written, certainly, but it sure is cathartic:

I really hate Haddie now.

You know what else I hate? Autism Speaks. Not anything new, but worth saying again.

Yes, Mom, you are doing something wrong. You’re encouraging your son to raise money for an organization that is oppressing him. And you’re continuing to be a self-pitying jerk about having a child who doesn’t fit your made-to-order specifications.

As if we needed another reason to hate Kristina: slut-shaming. That’s right. Only perfect, neurotypical, forever-virginal children for her. She and Haddie the Terrible deserve each other. Because Haddie might be a mean girl, but at least she's neurotypical and a virgin.

The idea of “something being wrong with” someone else seems to be a prominent theme in this episode, whether it’s Kristina saying there’s something “wrong” with Max (grr), or Amber thinking that there’s something “wrong” with her for having sex with Steve after her cousin had already broken up with him. Wisely, Sarah (Amber’s mom, that is, not me) tells Amber that there’s nothing wrong with her. Which is great and all. It certainly beats slut-shaming. But when is someone going to tell Kristina and Adam that there is nothing wrong with their son? (Their daughter, on the other hand, is a mean-spirited asshole. Cure assholishness now! We need to walk to cure this epidemic in our midst. I'd say to act now, before it's too late, but alas, it is already too late.)

Breast enhancement surgery mom subplot is mildly amusing. When that’s the highlight of the episode, though, we’re in trouble.

“You can’t let pain tell you how to live your life.” Tell that to Autism Speaks, please…as an organization they haven’t yet moved past the “grief” stage.

ABA hasn’t been a major them for the past several episodes, but there are hints of it which definitely show one of the basic problems with it—namely, that it resembles dog training. Stickers, bones…it’s all the same kind of thing.

Autism Speaks colors and logo make me see red.

Team Braverman is helping eugenics. Yay!

And Max’s parents are still completely misleading their son. Grr indeed.

And now because all of the Autism Speaks-promoting apparently wasn’t enough…we have a blatant ad at the end? Grr doesn’t adequately cover it.

Neurodiversity: Not Just About Autism

2010-05-08T23:11:00.000-07:00

Or at least, it shouldn't be.

I think we in the self-identified neurodiversity movement are oftentimes guilty of implicitly and explicitly saying that neurodiversity is just about autism.

But it shouldn't be.

And some common sentiments in the autistic community are, quite frankly, marginalizing of many neuro-atypical people.

Take, for instance, the knee-jerk reaction which many autistic people have to the idea that autism/Asperger's is a mental illness. Now it is technically true that autism isn't classified as a mental illness, medically. But if we're being honest with ourselves I think we need to acknowledge that it's at least something like a mental illness in terms of social classification and stigmatization. Moreover, there isn't really a clear, objective distinction between which conditions are "mental" and which are "neurological." At all.

We are very much in the same boat, and not just because so many of us have MI diagnoses in addition to being autistic.

Why, then, do dehumanizing statements about people with MI appear on popular autism blogs and message boards with such frequency?

An example: Autistic advocates try to disassociate themselves from John Odgren by speculating that Odgren has bipolar disorder.

The message: We object to people saying that autism/Asperger's is associated with violence, but making associations between another mental/neurological condition and violent acts is fine with us.

Attitudes like these are not uncommon amongst the autistic community. "Bipolar" and in particular "schizophrenia" are thrown out like epithets used by autistic people to disassociate themselves from other human beings. And just as there is a problem with aspie supremacists not wanting to associate themselves with so-called "lower-functioning" autistic people, so too is there a problem with the rush to disassociate autistic people with MI--particularly the "scary" MI categories like bipolar and schizophrenia. (Don't even get me started on how people with schizophrenia, in particular, are demonized in various sectors of society). In doing so, these autistic people use similar tactics to those which are used to oppress us. When we treat non-autism mental differences as Terrible and Scary Things, we are implicitly acquiescing to the ideological system of neurotypical supremacy. A movement that seeks to de-stigmatize autism while re-stigmatizing bipolar and schizophrenia (amongst other conditions) is not one that I wish to be a part of.

In the immortal words of Audre Lorde, the master's tools will never dismantle the master's house.

Irony & Autism Speaks Fund-raising

2010-05-05T18:03:00.000-07:00

Autism Speaks' latest fund-raising tactic:

If you love the smell of burgers and onions, or just the distinct aroma of a White Castle fast-food joint, you can buy a White Castle candle for $10. The proceeds go to Autism Speaks, the country's largest autism advocacy group.
(Source)

The irony of this, of course, is that most autistic people experience sensory hyper- and hypo- sensitivities, and thus are likely to find this scented candle rather repellent. And I can't imagine many non-autistic people finding such a thing particularly appealing, either.

Alas, the candles are currently sold out, so people are buying the wretched things regardless. I can only hope that households with autistic people currently living in them will not subject autistic people to the putrid scent of White Castle. Bad enough that people who are trying to "help" are giving money to Autism Speaks in the first place.

In a way, these $10 White Castle scented capsules encapsulate Autism Speaks. Expensive, useless, and repugnant--particularly to autistic people.

And they say irony is dead.

Another Bullying Study: Water is Wet II

2010-05-04T13:09:00.000-07:00

In the vein of this story comes more "news" on bullying: being overweight increases your chances of being bullied. This news is absolutely shocking, I know.

The people who ran this study--and the other bullying study about social ineptness--could have found out the same things just by asking me about my childhood.

Next there will be a study showing that the Pope is Catholic.

H/T Shakesville

To Tell or Not to Tell

2010-05-01T08:28:00.000-07:00

Today I will be on a conference panel speaking about self-advocacy with regards to disclosure of disability, so that's been on my mind lately. I thought I would address the general topic for BADD as well.

While the concepts of "passing" and "having an invisible disability" have been useful to me in negotiating and feeling secure in my own identity as a disabled person (autistic with a side of various mental health stuff), there are limitations to these concepts. Chally and Amanda articulate many of these limitations very well. Some recent events in my own life have also prompted me to reconsider the definitions of disability (in)visibility and the utilities of disclosure.

For some non-autistic people who talk about disclosure, disclosure is this magical thing which will prompt all the non-autistic people to start becoming nice and accommodating towards us.* Most actual autistic people know better. Still, I do advocate disclosure, and not only for the potential accommodations/understanding (which is great, of course!) I've come to realize that being open about disability is also, in fact, a tool which fights internalized ableism, perhaps the most pernicious form of ableist oppression.

Six months ago or so, the idea of my being on a panel about autism and disclosure would have been laughable to me, and I doubt I would have agreed to do it at all. The idea of my being any kind of expert on disclosure still seems somewhat absurd to me, given how frequently I've mucked up disclosing in my own life. By and large I've tended to err in the direction of not disclosing, often waiting until some kind of disaster occurred. While I intellectually "knew" that there was nothing shameful in being autistic, my actions often belied this belief. I too often treated my diagnosis as a Secret (capital S) to be carefully guarded. Because, of course, being autistic did feel shameful to me, despite my pro-neurodiversity beliefs. I can do well passing most of the time, I told myself. So why bother disclosing unless I absolutely have to? Why take the risk?

As I began graduate school last fall, I embarked upon a new cycle of angst about disclosing. I constantly worried about if and when I should tell my new classmates and professors. Would they treat me with condescension, or outright discriminate against me? Would they not even believe me in the first place, because I can do a good job of pretending? The to-tell-or-not-to-tell question became a source of anxiety which equaled or even surpassed the stress of adjusting to graduate school in a new city itself.

I angsted in particular about disclosing to one person. Finally, around mid-January, I disclosed to this person. Only to be told that xe already knew, for a variety of reasons which included my own behavior and communication style. And I have generally thought of myself as being able to pass really well! But clearly, my "invisible" disability wasn't quite as invisible as I thought it was, to this person at least (who, by the way, is not a psychologist, neurologist, or anything of the sort).

This surprising turn of events was oddly liberating, and since then I've become significantly more relaxed about the whole thing. I'm realizing that the whole disclosure business doesn't have to be as much of a Big Deal (capital letters) as I once thought it to be. I'm more cognizant of the probability that a lot of the people I interact with are recognizing that something is different about me anyway. And that's okay. As is explicitly identifying myself as autistic.

I'm certainly not naive enough to think that disclosure will make everything better. In fact, it really bugs me when non-autistic autism "advocates" talk as though disclosure is some kind of magical panacea which will make everyone more understanding, as I mentioned before. I'm fortunate in that I have yet to receive any reactions to my disclosure which are downright insulting, but I know that probably won't always be the case. And that sucks, deeply. That's one of the reasons I'm deeply committed to eliminating ableism in our society.

But for most disabled people, fighting ableism begins with ourselves. We are implicitly and explicitly taught from birth to view disability as awful, tragic, and shameful. That's damned hard to undo. I'm still working on it with regards to my own disability, and I certainly still have a ways to go in terms of fully acknowledging and dealing with the privilege I have as a non-physically disabled person and as a kind-of-sort-of-"passing" person with neurological/mental impairments.

I don't think I'll ever get the whole disclosure business down perfectly or anywhere close to it. I doubt I'll ever know for sure when the "right" time to disclose is. As long as autism remains stigmatized, I'll probably always hesitate at least a little bit before disclosing. But I hope that over the upcoming months and years I will continue to be more forthcoming about my diagnosis than I have been in the past. Not just so other people will understand me better--though that would be great--but so that I can continue chipping away at my own internal ableism. Because being autistic (or having any other disability) should not be a shameful secret. It's bad enough that some people treat my neurology as shameful. I certainly don't need to.

*Yes, most "advocates" don't put it in those terms exactly, but I've read/heard far too many non-autistic people treat disclosure as a panacea, without acknowledging the potential discrimination we open ourselves up to when choosing to disclose.

A Reminder on Comments Policy

2010-04-26T14:32:00.001-07:00

(This is not in response to any particular individual. I just thought I would review the comments policy.)

Comment moderation on this blog is based on the content of posts, not the identity of the posters. In general I ask that commentators be polite to myself and other commentators. Express disagreements with ideas; don't focus on individuals. Please, please, please do not take conflicts from other places on the Internet to this blog. There are plenty of other places to carry on with that. In general, try to ask these questions when posting:

-Does this post have any personal insults?
-Does this post address the general content of the original blog post, even if in a tangential way, or does it simply address conflicts carried over from elsewhere?
-Do all disagreements within this post focus on ideas, or are there comments about personal character?

If the answer to any of these questions is yes, you may want to reconsider before posting.

No one is categorically banned from posting, with the exception of a single individual. And this person never, ever follows these guidelines anyway, so it's a moot point.

I have in the past approved comments from people who I generally disagree with, and I've also not approved comments from people who I generally like and agree with.

I exercise a certain amount of discretion in approving posts and I don't claim to have the system down perfectly. But these basic guidelines do, IMHO, a great deal to improve the level of discourse here.

Links & Things

2010-04-22T19:19:00.000-07:00

A collection of links and some odds and ends that I don't feel like giving their own post:

Why Glee Makes Me Want to Kill Someone by zhenya

Recognition at FWD/Forward

Interview with an Autistic Child at A Life Less Ordinary

Age of Autism Exploits Tragedy at Rethinking Autism

(Shocking, I know)

Autism Women's Network at blogtalkradio: Racial and Ethnic Disparities in the Autism and Cross Disability Communities

I have issues with some of the ways in which this material is presented, but it's great to see people talking about this.

-After missing last week's episode of Parenthood, I watched this week, only to be annoyed and un-entertained again. More "woe is me, I have an autistic child" dramatizing, more cliches and sappiness.

But I have to admit that I was personally hoping that Sydney would turn out to be on the spectrum, too.

Why? Well, because having more than one autistic character in one work shows audiences that not all autistic people are alike--including those who share an "Asperger's" designation. It also helps to avoid stereotypes, as perhaps writers won't feel compelled to shoe-horn every single autistic trait into one character, as so many do. I actually think the Parenthood writers have been doing a fairly good job in presenting a believable character so far, but it can't hurt to have another character. And a girl! Girls and women on the spectrum are so rarely represented and I was kind of hoping there'd be a concrete example. Alas, no.

Some people might say that Sydney's characterization thus far isn't consistent with being on the spectrum, but I wouldn't be so quick to make that judgment. In particular, her experiences with the intolerable Harmony (daughter of the intolerable Raquel) remind me of my own early social experiences being domineered by other girls. Always being, figuratively, the servant to the other girl's princess feels eerily familiar to me.

The reactions of the parents when they heard Sydney was "gifted," and the contrast to the fears that something was "wrong" with her were very telling (and obnoxious). I guess it's better to have problems in school because you are Super Special and Gifted than it is to have a disability. Just...no. I personally consider giftedness to be a special need of a kind, but I loathe the ways in which society treats giftedness and disability so differently. When really there are numerous similarities. Gifted students, students with disabilities, and those who are both, all need a more individualized education than that which is typically provided.

-On another distressing Parenthood note, I found out from a commentator on a previous post that an upcoming episode will feature an "Autism Speaks" walk. This move is sure to take the show from being patronizing of autistic people to being downright insulting. Good work, guys.

-As April winds to a close, I realize there have been relatively few outright Horrible and Terrible "awareness" campaigns. Have self-advocates finally gotten through to the "awareness" brigade? Have we reached a media saturation point on autism? Hard to say.

Children Made to Order

2010-04-21T11:04:00.000-07:00

I have been quite troubled by the media coverage of the recent tragedy involving a seven-year old Russian adoptee whose adoptive mother sent him back to Russia--on a plane, with no one waiting for him at the other end. In addition to the explicit disability-related issues which are being poorly handled, I can't help but notice the parallels between the adoption discourse and the autism discourse. In both cases the focus is ostensibly on "children," but really ends up being more about parents. The voices of adults with first-hand experience (of adoption or autism) tend to be absent.

As an adult transnational adoptee blogger at Harlow's Monkey writes:

Why are no mainstream media outlets asking how this is going to affect the child in question? Why have no media outlets asked an adult person who was adopted internationally and "disrupted?"
ADOPTEES HAVE FEELINGS! Plus, guess what? Some of us are experts in adoption disruptions. Want to know what it feels like to be an adoptee who was kicked out by their adoptive parents? There actually are a lot who could answer that question for you.

This is the essence of what many autistic adults have been saying as well. For both adoption and autism, there is a prominent cultural narrative which treats parents as saints and martyrs, often refusing to acknowledge that said parents might sometimes make mistakes. Would it be socially acceptable for a parent to put any other seven year-old child on a transcontinental flight with no one waiting at the other end? Would it be acceptable for a parent to decide to return another child like a car that doesn't work correctly? Yet because this child is adopted, and coded by his adoptive mother as "violent," "unstable," and "disturbed," the ethics of the situation are apparently up for debate. Defenses of the mother's actions appear in mainstream publications. The actual child's perspective? Well, apparently that's just not very important. Most of the coverage I've seen quite explicitly identifies itself with the "mother," by which I mean that it looks at the situation from the perspective of adoptive parents exclusively, being inherently sympathetic towards them. But not towards adopted children themselves, apparently.

This is one more example of how children in general--and "abnormal" children in particular--are objectified as commodities. Like commodities, children are intended to fulfill parents' fantasies of happiness and "normality." When a child turns out to be different than expected, they can expect to be treated as "broken"--and, as in this case, even returned to the sender. (For another example of the normality-fetishizing discourse, see this thread on WrongPlanet.)

As Harlow's Monkey writes:

We are not packages to be sent back because we didn't come according to standardized factory specifications. Maybe we should start putting consumer warning labels on children:
Warning: Hand made. Each one is different, therefore no two will be alike. Actual product may differ from the one shown in advertisement. NO RETURNS.

This particular case presents a clear example of the intersection between adoption discourse and children with disabilities discourse. Please note that this has nothing to do with whether the boy in question "actually" has a diagnosable psychiatric disability. That's besides the point. The pertinent fact is that the adoptive "mother" has justified her actions on the grounds that "this child is mentally unstable. He is violent and has severe psychopathic issues/behaviors" (direct quote). This kind of dehumanizing, faux-medical* vocabulary is commonly used to describe people with psychiatric and/or neurological disabilities. And, apparently, to justify our being treated in ways which would be unthinkable for a "normal" child.

*"Psychopathic"? Really?

TV Tonight

2010-04-13T09:05:00.000-07:00

I think I'll be watching Glee rather than Parenthood tonight. Because while Glee also brings the ableism fail (in addition to the race fail, sexuality fail, etc.), at least it manages to be entertaining while doing so. I can't say the same of Parenthood, sadly.

Constance McMillen and Thoughts on Invisibility

2010-04-09T14:16:00.001-07:00

I've been following the story of Constance McMillen, a teenager who was denied access to her high school prom for daring to be an out lesbian, with interest. (Readers may recall that I've briefly commented on the situation previously.)

Constance's story and nerve is an inspiration to us all. It truly illustrates that teenagers from marginalized groups can be powerful self-advocates. Given the rank bigotry and harassment she has been subjected to from many of her classmates, it's certainly important for those of us who believe in equality and justice to publicly express our support for Constance. I suspect that she has inspired other young people to speak out against injustice. While unfortunately the high school and its surrounding community stubbornly refused to allow Constance to exercise her civil rights, I hope this highly publicized incident will cause other high schools to think twice before sanctioning "No Gays Allowed" events.

But Constance wasn't the only student who was excluded by being sent to a segregated prom. As her account of the separate-and-unequal prom indicates, at least two students with learning disabilities were among those who received inequitable treatment. Unfortunately, too many accounts of the situation are focusing exclusively on Constance, a non-disabled student (presumably), while paying little or no attention to the disabled students who were also excluded.

Ableism and homophobia are both harmful, oppressive systems in need of being combated. Everyone has the right to be fully included in society. It's time for people devoted to dismantling bigotry to focus on all forms of oppression and exclusion.

Miscellaneous Thoughts on Parenthood

2010-04-07T21:25:00.000-07:00

Some random, unorganized thoughts about NBC's Parenthood: (this may not make very much sense to readers unfamiliar with the series)

-I would not be watching this show anymore were it not for my concern for how we (autistics) are being portrayed in popular media. The show is very trite, cliched, and not particularly compelling in general, after six episodes. It's hard to get that excited about what's going to happen to this (rather uninteresting) family when you know that everything will somehow become (temporarily) solved during the last ten minutes, with sappy music playing in the background. Even the divine Lauren Graham can't save this for me as a story.

-The parts of the most recent episode involving Max receiving behavioral therapy were extremely uncomfortable for me. It just seemed really icky and coercive and geared towards normalization. (With a large helping of more woe-is-me autism mother trope on the side.) Just...urgh.

-Shockingly (or not), the behavioral therapist turns out to be a Magical Therapist who not only helps Max play with another child, but gives soothing advice to his mom--allaying her fears and improving her sex life. All in one afternoon!

It really bothers me to see people who work with autistic people portrayed as saints with no obvious flaws, which is what this therapist character (Gabby) seems to be so far. Because obviously anyone who would choose to work with autistic people must be a saint, by definition. Far too many people actually believe that kind of nonsense, which obscures the very real power which therapists hold over their clients, and the very real potential (and actuality) of abuse. It's just really, really uncomfortable. Pretty Nice Behavioral Therapist Girl holds power over the children she works with.

-I have a serious dislike for Max's parents, thanks in large part to all of the woe-is-me-for-not-having-a-normal-child moping.

-Julia is one of the few adult characters I find myself at all sympathetic to, but the storyline between her and Raquel is just tired and tedious. Why must everything come back down to the stay at home mom vs. career mom thing? When, really, the idea that one should not flirt with someone else's spouse is really quite basic and has nothing to do with all of that crap.

-A love triangle plot between the mom, "rebellious" teenage daughter, and the English teacher? Really? (And why is it always the English teacher, anyway? Why not chemistry or history, ever?)

-I found myself hoping that the show would address the issue of Crosby's son being multiracial and how the lily-white family might react to that. Naturally, this issue has received no attention whatsoever thus far.

-Similarly, I was hoping we might get some commentary about discrimination against autistic people. Last week's episode in which we see several people condescending to Max seemed to suggest such an idea, but we didn't get anything more than a sappy ending, as per usual. Sigh.

Overall, I just don't understand the appeal of this show. Granted I'm not in the targeted demographic, not being a parent, but I can't imagine that many actual parents are enthralled by this trite crap, either. Real life does not magically fix itself at the end of each episode!

To Explain a Bit...

2010-04-06T19:34:00.000-07:00

A number of readers expressed confusion at my most recent post. For some clarification as to what's going on, I recommend almandite's take on the situation. (Yes, I'm biased, but aren't we all?)

I hope to resume regular blogging soon, but I just don't have the heart to do so right now.

Direct All Tomatoes Here

2010-04-04T13:19:00.001-07:00

I would like to leave a space for people to comment on recent events. Comments are, as always, moderated. Personal attacks on myself and other commentators are unacceptable.

[Expletive] the LAPD

2010-03-21T21:12:00.000-07:00

It saddens me to report that Steven Eugene Washington, a twenty-seven year old autistic man, was shot to death by the Los Angeles Police Department yesterday morning. The officers managed to kill Steven with a single bullet directed at his head. Though Steven was, in fact, completely unarmed, he committed the double crime of being autistic and a man of color. Now Steven is dead, and the LAPD is responsible for yet another instance of unwarranted police brutality. These are the people who are supposed to be protecting us?

The LAPD should be fucking ashamed of itself, and I hope that we end up getting more than the usual canned crap about mistakes and possible threats and blah blah blah. American police forces, particularly the LAPD, have been responsible for far too many "accidental" deaths. We need real change to our police force and we needed it yesterday. In the next few days you'll probably hear calls from various advocacy groups for more police training about autism. I fully support this.

However, I fear this is not enough. The system needs more than band aid solutions. We need to permanently overthrow the terroristic system of shooting first and asking questions later. As this tragedy and so many others have shown, it is almost always the most marginalized people in society who suffer the consequences.

I hope to see real change and accountability within the LAPD, and soon.

[Side note: This is not the main purpose of this post, but I can't let it go by without comment. I am thoroughly disappointed in the family members and journalists who chose to represent Steven as mentally "a 12 year old" and the like. This is not true--Steven was 27, period. Having neurological impairments does not mean actually being younger than one's actual age.]

Blogging House Rules III: The Autism Mother

2010-03-19T11:55:00.000-07:00

As promised, I'll be blogging a bit more about House Rules, and in the future Nightstorm and I will be doing some kind of review on our blogs. For now I'll continue to document my reactions to the book in an admittedly haphazard fashion. This post focuses on the book's mom, Emma. I don't think this post is particularly spoiler-y.

Emma, like most of the characters in this story, embodies too many viewpoints at once and is, as a result, rather incoherent as an actual character. She is a composite character; I doubt any actual autism parent resembles her. Nevertheless, discussion of her does provide a way to discuss various issues involved in autism parenting. I feel obliged to provide a disclaimer that I am not myself a parent (yet), but I do have experience of being on the other side of that equation and have strong opinions on the subject.

The problems I see with Emma go in two very different directions. On the one hand, she holds some truly asinine views about the child she supposedly lost (as I have previously discussed) and sees her son as broken and in need of fixing. She is pretty far into the biomed nonsense. She whines a lot--about how Jacob is supposedly keeping her from having friends, from having a non-crappy job, and doesn't really care about her or anyone else. Constant, constant whining about the loss of the "normal" child she feels entitled to. (Remember, her autistic son is 18 and has been diagnosed at a young age.) In what is perhaps the most asinine line of the book, Emma says this:

I suppose Theo bears the brunt of all my dreams. I hope for Jacob to blend into the world more seamlessly, but I hope for his brother to leave his mark.

The ableism here is quite self-explanatory.

So Emma is quite anti-neurodiversity in many ways, it would seem. Yet despite the asinine views she holds about her son, her parenting of him is at times too coddling, too accommodating. (This is exacerbated by the fact that Jacob has way more autistic "quirks" than are likely to be found in any single human being, but for the sake of this analysis, that's not as relevant.) She cooks meals for him according to an elaborate plan of Color Food Days (i.e. all white food, all blue, etc.) This apparently involves cooking new meals every single day. She arranges the family's schedule around Jacob's favorite TV program, which comes on at 4:30 every day. She even went so far as to call the power company during a power outage and whine about how the power outage was "really" an emergency for her family because she has an autistic son and the TV show is part of his routine. Funny, that--I was under the impression that power outages were emergencies for everyone!

I think it's a strawman to say that neurodiversity people "expect the world to revolve around our quirks." That isn't what we're asking, at least outside of a few random people on various message boards. But Emma, who holds anti-neurodiversity views, really is expecting the world to revolve around her son's (ridiculously numerous) quirks. And then she complains about feeling confined in her life! Whose fault is that? Not her son's.

Emma/Picoult is guided by the fundamentally mistaken assumption that autistic people are so rigid that we are incapable of learning and adapting. It's insulting. This ridiculous assumption leads them to believe that parenting an autistic child means catering to one's child at all costs, or else risk inevitable violent meltdowns. (abfh has recently done a good job demystifying various stereotypes about autistic people, violence, and meltdowns.) Which is not true and does all of us a disservice.

While neurodiversity proponents typically advocate for parents to consider their child's needs and limits, I doubt you'll find very many of us who approve of Emma-style parenting. Au contrair, I think this kind of treatment is stifling Jacob's growth and learning. Everyone, autistic or NT, needs the skills to cope and adapt, and Emma is denying him opportunities to learn that. And it's a truly horrific way to parent an autistic child, though fortunately I doubt that many non-fictional parents actually do this.

My biggest issue with my own parents, in short, is an all-too-often failure to perceive that I have different limitations than a neurotypical person. Emma has the opposite problem. She expects too little of her son, wanting just for him to "blend in," all while coddling him to the point where he isn't given any real opportunities or independence. I don't recommend either method, but if forced to choose, I would go with my parents'.

In summary, Emma's character is rather incoherent and self-contradictory. She represents the worst of autism parenting in several ways--first, by having such abhorrent views of her son and treating him as though he needs fixing; and second, by denying him opportunities for personal growth.

Picoult is very didactic as a writer. Well, let this be a lesson in how not to be an autism parent.

Links: Fearing for Public Education in the U.S. Edition

2010-03-13T10:44:00.000-08:00

The past week has brought distressing news about public education in the United States:

In North Carolina, a teacher calls a student a "loser" on her paper and takes 20% off.

In Mississippi, a high school cancels its prom rather than allow a lesbian student to attend with a date, hence making an already marginalized student a strong target for bullying and abuse.

And in Texas, conservatives win the battle to rewrite the history curriculum (despite not having consulted any actual historians). The new curriculum will emphasize the importance of God in history (?), whitewash the history of racism and other inequalities in America, and omit everyone who's not a white male Christian from the history books. This is in spite of Texas's large Latino population. The new curriculum also demands omitting any mention of institutionalized racism. Ironically, the whole debacle is an indication of institutional racism.

When will public schools live up to the ideals of liberty and equality which conservative "patriots" trumpet?

More Thoughts on Robison

2010-03-11T11:01:00.000-08:00

After thinking about it for a few more days, and from reading comments here and elsewhere, I have revised my thoughts on John Elder Robison and his position at Autism Speaks. While I still find his decision to join up with Autism Speaks to be rather dubious, to say the least, I can somewhat understand his good intentions in doing so. I suppose that it was inevitable that the first autistic to join Autism Speaks was going to end up as a pariah among a large portion of the autistic community. But, nevertheless, we have been asking the organization to give us autistic representation, and now they have done so, if only in a very small way. (I note that Robison is still only one of thirty on the Scientific Advisory Board, and that there are still no autistics on the Board of Directors, which is where most of the major decision-making happens.) As much as I still harbor strongly negative feelings towards the organization, I have to commend them for that. I hope that it does not take another five years for the next autistic person to be appointed.

I also retain my skepticism about Robison and his priorities, but of course it was unlikely that the first autistic appointee would have views that strongly resemble my own. Robison is a better choice than some, and I can't help but be heartened by the negative reactions which several prominent anti-neurodiversity bloggers have towards his appointment. (If only he would stop cozying up with the Age of Autism crowd.)

This appointment does not change the fundamental reasons why many autistics and allies oppose Autism Speaks. I acknowledge that Robison could change the organization to some extent--but I personally doubt that he will, based on his views and previous pattern of advocacy, as well as the fact that he is still only one person among many. And until we see actual change in Autism Speaks, the criticisms against the organization remain quite valid. Robison has said that he supports the majority of funds going towards "research" (including causation research). Even if Autism Speaks does raise the percentage of funds directed towards services from 4% to 6%, or something, we are unlikely to cease our criticisms of Autism Speaks, and with damn good reasons. Their model of autism advocacy simply is not one which represents our priorities, and no appointment can change that.

Celebrity Autistic Teams Up With Autism Speaks

2010-03-09T11:57:00.000-08:00

I suppose it was inevitable that a celebrity autistic would join up with Autism Speaks, and now John Elder Robison has done so. I note that it's taken Autism Speaks "only" five years to respond to ongoing pressure from autistic self-advocates and allies to appoint its first autistic. At this rate, we should have two autistic people involved with Autism Speaks by 2015.

I am rather disappointed in Robison's decision--though I'm unfortunately not shocked by it, having been a regular reader of his own blog. I see in his latest blog entry there is more of what I've come to expect from him in terms of its equivocating and pandering language. Mr. Robison writes:

One of my principal areas of concern will be identifying and funding studies that have a high likelihood of improving the lives of autistic people today. Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability.

While I'm glad to see that Robison cares about research which will help autistic people "today," I think he's not fully explaining what he means by this research. So to clarify: Mr. Robison means research that will make autistic people appear to be more like neurotypical people. This is what the TMS research which he is involved in does, as anyone who reads his blog will see. This is what much of behavioral therapy does; so much of it is focused on neurotypical emulation rather than genuine education. This is medical model-type thinking which focuses on "fixing" individuals rather than seeing how we might best educate them and provide for their needs. I expect that this will continue to be the direction that Autism Speaks-sponsored research will take--in addition to, of course, the causation and genetic research.

Note that Mr. Robison--no doubt appealing to his pro-cure supporters, Kim Stagliano among them--is still claiming that causation research is "important." Why, I do not know. How does causation research do anything to help autistic people today? Nevertheless, I am disappointed by his failure to be concerned about the potential applications of such research, particularly the potential that such research might be used for eugenic purposes. I hope that his presence at Autism Speaks might steer the organization away from its emphasis on genetics research, but his equivocating comments don't suggest that he will be taking a strong stance on that. Nor do I receive any indication that he is concerned with other glaring problems in the organizations' activities and allotment of funds. Most notably, there is the organization's continual tendency to produce dehumanizing media campaigns, and the fact that only 4% of its non-overhead expenditures go towards providing services. Will Robison address these problems? His initial post on the matter does not give me a great deal of confidence.

Another part of the post that bothered me was the claim that he only wants "treatments" (cures) for those who voluntarily seek them. Yet that is unlikely to happen. Most Autism Speaks research is focused on very young children, who will not have any say in which "treatments" they receive. All autistic people are legally bound to their parents' medical decisions until the age of 18, and many are legally bound far after that due to guardianship policies which can deny autonomy. And, of course, no autistic person is entirely free from social pressures to become neurotypical. Hence Robison's insistence that he wants all "treatments" to be voluntary doesn't mean very much, in a real-world context. That is the kind of thinking we need to do about scientific research: what kinds of real-world implications does it have, and how are we to evaluate the ethics of conducting and implementing it? (Please note that I am not saying that I am opposed to all autism research. I just think that a lot of it, including most Autism Speaks-sponsored research, is in dire need of ethical interventions.)

I don't think there's any way for me to say this next part without sounding abominably rude, but I feel compelled to nevertheless. In reading Mr. Robison's book, he struck me as someone whose sense of ethics is in serious need of fine-tuning. I know this sounds harsh, but I honestly don't know what else to say about a person who claimed to be panhandling in order to "help orphans," when he was in fact raising money for an elaborate prank on his high school teacher. (At any rate, at least Robison succeeded in countering the myth that autistic people can't lie.) In another example, I felt that Robison's discussion of marriage was blatantly misogynistic, and I found it appalling that he tried to use autism/Asperger's to justify his sexism. I do not mean to say that Mr. Robison (a sometimes commentator on this blog) is a bad person or anything so harsh. But I do have serious concerns about his ethics, and I am not optimistic about his capacity to change Autism Speaks. This news says more about Robison than about any indication that Autism Speaks is changing its directiion.

Shooter Had History of Neurotypicality

2010-03-05T19:08:00.001-08:00

No, that's not an actual headline. But I greatly look forward to the day when we do get these headlines.

Right now, our media sees no problem in smearing millions of people by association because of a diagnosis they might happen to share with a criminal.

We need to think critically when we hear these kinds of stories--and remember that:

1) People with mental illness and other similar conditions are much more likely to be victims of violence than perpetrators.

2) Most people who commit crime are neurotypical.

These salient facts won't be making any headlines, unfortunately.

Blogging House Rules II

2010-03-03T20:10:00.000-08:00

[Post contains a general discussion of Jodi Picoult's House Rules, but few if any specific spoilers.]

Contrary to certain stereotypes about autistic people, I love reading fiction and always have. Some novels feel like great friends to me. House Rules is definitely not one of those. In fact, I'm not sure that House Rules is even much of a novel at all. The latter part of the book too often feels like Lengthy Exposition About Asperger's Syndrome Which Just Happens to Be Part of a Novel. It's very didactic. As someone who definitely doesn't need to be educated in this area, it's really quite tedious. If I wanted to read autism-as-pathology literature, I'd pick up any number of nonfiction books on the subject. The primary purpose of a novel is not to provide a 500-page Public Service Announcement.

And as someone with this (soon to be merged) diagnosis, I really don't want Picoult to be the one to deliver this particular Public Service Announcement. I acknowledge that she does her research pretty thoroughly. She's clearly read a number of books on the subject. I know from her acknowledgments and interviews that she's met a number of autistic kids and teens and their parents. But this does not for a fully realized representation of autistic people make. While I commend her for doing a better job than some in creating a fleshed-out autistic character, the book still reads too much like an attempt to work every single autistic trait (and stereotype) into one character. And that flaw is, in my view, fatal to Picoult's attempt to create a compelling work of fiction and a fully realized autistic character.

Typically, even the special interests and talents don't seem entirely coherent. I get that her character had to be a forensic science geek for the plot to work. Okay. But was it really necessary to give Jacob virtually every other stereotypical autistic interest and talent--ability to take apart computers, an affinity for numbers, etc.? Why couldn't fantasy novels be another one of his interests?

Picoult doesn't recognize the variability of the autistic experience. The book sets up Jacob as a prototype for Typical Asperger's Autistic Person. There isn't any acknowledgment of our diversity, not least because the only other autistic character is Henry the Deadbeat Dad of Maxine Aston's imagination. And he's just like Jacob, except for being less obviously impaired. Autism in House Rules assumes a one-size-fits-all model.

Nor does Picoult acknowledge our ability to learn. Her view of autism is very flat and mechanical, centered more than anything around these formulations:

Deviation from Plan/Sensory Trigger = severe meltdown in every instance

Figure of Speech/Metaphorical Language/Sarcasm = complete and total confusion in every instance

Attempt to Be Social = talking about special interest in every instance

Neither formulation is always true of every single autistic person. In fact, autistic people--like non-autistic people--do not have perfectly predictable behavior patterns. (In other words, we don't always react the same way to the same stimuli.) Nor do we spend the entirety of our lives in complete confusion every time someone uses an idiom. We are capable of learning skills. But Jacob doesn't seem to have changed much from childhood--except for his increased interest in socializing, thanks to the wonders of biomed. In her attempt to cast us as perpetual children, Picoult refuses to show the possibility of our character development. In her effort to make Jacob seem Really Autistic, she turns him into a caricature which doesn't resemble any real autistic person in whole.

This autistic person, for instance, is pretty good with figurative language. This meant that I didn't miss out on any of Picoult's ridiculously obvious, melodramatic metaphors--in this book or in any of her other books that I've read. How fortunate for me that I am able to see that Jacob and his brother being trapped in a boat and Jacob taking up all of the oxygen is a metaphor for their lives. (And I can even use sarcasm, too.)

More on this book will likely be forthcoming.

Blogging House Rules I

2010-03-02T12:28:00.000-08:00

Given my obsession with Jodi Picoult's House Rules, this shouldn't come as a surprise to readers. I just can't help myself on this score. My copy arrived this morning from Amazon, and I've started reading it. It didn't take long for me to figure out that I would need some kind of blogging therapy to get me through reading this book. And by therapy I mean therapy-for-dealing-with-bigoted-ideas-about-people-like-me therapy, not I'm-so-broken-because-I'm-not-neurotypical therapy. There is a difference. And so I present the first part of my review of House Rules.

[Note: The rest of this post contains spoilers through page 71 of House Rules.]

My mother always told me that if I can't say anything nice about someone then I shouldn't say anything at all. I don't really believe this applies in all instances, but in the spirit of that I'll start by saying some nice things about Jodi Picoult. She is clearly working to make her autistic character a sympathetic one, and it does seem from reading her acknowledgments that one autistic teenager vetted the book for accuracy. (Yes, yes, that's hardly engaging with the autistic community, but it's better than nothing and it's better than what some authors do.)

But even though I appreciate her attempts to make Jacob sympathetic, too much of this reads like autism zoology to me, and by that I mean that the book is encouraging its readers to gawk at how weird autistic people are. Picoult insists on giving her character practically every single possible autism quirk (except, thankfully, for being a savant). I've read several of her interviews, and the information she has on her website, and it seems pretty clear that she's created a pastiche of different anecdotes that she's heard from the parents of Asperger's autistic children. This does not a fully developed character make. At the same time, I do acknowlege that Jacob seems far realer than many other fictional auties penned by non-autistics--Christopher from The Curious Incident for instance.

Entirely too much of the book is spent on dwelling on Those Poor People Who Have to Put Up With Autistic People, especially the family members. It's trite and offensive. Are we supposed to sympathize with Jacob's brother Theo, who breaks into people's houses in response to his family life?

The book does suggest some of the positives of autistic people--if not the autistic experience itself--but the stronger message is that autistic people are broken and in need of fixing. The mom in the book (Emma) isn't Jenny McCarthy-level ridiculous on the issue of vaccines, but she nevertheless believes in some kind of vaccine "link." This is the supposedly moderate position which many anti-vaxxers take in order to disguise the extremity of their views. For Emma, "Asperger's is a label to describe not the traits Jacob has but rather the ones he lost" (5). When did he "lose" these traits? Around the time he was vaccinated, of course. Urgh. (Never mind that you can't accurately observe the social development of a one and a half year old--no, it's much more dramatic to talk about a vaccine "link" which steals normal kids away from their parents.)

Emma is a biomed mom, though, even if Picoult tries to hide it. He's on the GFCF diet. And, well:

Every day he takes a multivatim, a taurine capsule, and an omega-3 tablet. The taurine prevents meltdowns' the fatty acids help with mental flexibility. He lifts the newspaper up in front of his face as I set down the two treatments he hates the most: the oxytocin nasal spray and the B12 shot he injects himself, both of which help with anxiety.

Let me get this straight: Emma knows, somehow, that not only do these "treatments" "improve" autism, but she knows exactly how they work? For goodness' sake, even many of the quackiest DAN doctors you'll find don't claim to know the mechanics of their snake oil at this length of detail. And B-12 shots every day? Do people actually do this? I'm not as knowledgeable about biomed quackery as many of my readers are, so I'm asking for you guys to lend your expertise on this one. The idea of someone being forced by one's mother to take a shot everyday to make them act more normal is repulsive to me. And doesn't B-12 come in pill form, anyway?

Needless to say, it is totally irresponsible for Picoult to indicate that these are "treatments" for autism, or that all parents of autistic children inflict these misguided "treatments" on their children. I don't have exact numbers on it, but it is only a minority of parents who believe in the vaccine connection. Similarly, the majority of parents don't even do the GF/CF diet, let alone all of this biomed crap. I guess we should be grateful that Picoult stopped short of advertising chelation, Lupron, and hyperbaric oxygen therapy. (Though, for parents who are misled by DAN doctors, vitamins and the diet may well be the "gateway drug" to more troublesome treatments--not that these treatments are completely harmless, anyway. The GF/CF can cause calcium deficiency, and there have been reported incidents of autistic children becoming ill because they were given too many vitamins.)

I would hope that most people wouldn't get their medical information from Picoult, but given that an awful lot of them are getting it from Jenny McCarthy, it's hard to be very optimistic. I don't know if we're supposed to see to see the irony in that while Emma touts biomed "treatments," Jacob is pretty clearly on the spectrum in spite of ingesting all of that snake oil on a daily basis. But wait--I thought that stuff was supposed to help! I'm pretty sure this is unintentional irony, though. I guess Emma is like Jenny after all.

In any case, a lot of people will be getting the idea that autistic people are broken from this book, and that bothers me even more than the biomed-evangelism-passing-as-science. That's the message we get from the book: autistic people hate being autistic and only want to be "normal." Autistic people can't have friends. Autistic people can only get dates if girls with siblings with Down's syndrome pity us enough to "look past the Asperger's." (And, no, I'm not making that last part up.) Of course I realize, being autistic myself, that these things can be incredibly hard for autistic people. But the idea that we can't ever have friends at all (unless our mom pays someone to be our "social skills tutor") is just an offensive lie. So is the implication that we can't ever adjust to changes in our routine. The world is so overwhelming and non-hospitable to us that we're often given no choice but to learn at least some coping skills by the time we're 18. Jacob's brother whines about their household being arranged around Jacob's quirks, but he as a neurotypical gets to have the entire fucking world arranged around him. Yet somehow we're the ones causing everyone else's problems.

And now we get to Jess, the social skills tutor and her schmuck of a boyfriend, Mark. Jess gets paid to help Jacob with his social skills. She wants to work with autistic kids in the future because she's just that kind of a do-gooding person. (She's also the victim of gastric bypass surgery, but that's a whole 'nother topic.) Yet, in spite of being so allegedly nice, she drags her asshole boyfriend along to her meetings with Jacob so that he "can get used to being around people he doesn't like." This is in spite of the fact that her boyfriend is an ableist tool who, amongst other things, repeatedly calls Jacob the r-word. And then Jesse has the gall to get upset at Jacob because the mere fact of his existence seems to threaten her relationship with Mark. And Jesse compares herself to Mother Teresa. All of this is just rather astonishing for me.

Yes, I know that Picoult is showing all of these people (such as Jesse) to be flawed human beings. But I can't help having feelings of strong discomfort with all of it. I can't help but think that she is suggesting that it is only natural that people react to autistic people this way, that they treat us badly. (Yes, even the saints who take money to be our friends, or "tutors.") And that is the main problem that I have with this book.

As I continue to read, I'll continue to blog and review it. Writing this post made me feel remarkably better about the book, which was extremely upsetting to me. So I hope that blogging about House Rules will serve a number of purposes.

Oh, and I'm totally calling Mark as the killer.

Disability Studies Quarterly: A Must Read

2010-02-22T17:46:00.000-08:00

The most recent volume of Disability Studies Quarterly is now out, and it's a special issue devoted to neurodiversity. At first glance it seems as though at least half of the contributors are themselves on the spectrum.

The contrast between this and the medicalized literature on autism could not be clearer.

Unlike most other academic journals, DSQ is fully available online for people to read, so I encourage everyone to do so.

Am now off to go indulge in the disability studies and neurodiversity awesomeness. I am very happy and stimmy right now.

Philly.com Perpetuates Stereotypes

2010-02-21T16:17:00.000-08:00

Because apparently I can't get away from this topic: Christine Ma at Philly.com reviews Jodi Picoult's upcoming release House Rules. In this review, Ma perpetuates various stereotypes and misinformation about Asperger's autistics in particular--though ultimately harmful to all autistic people, in my opinion. I urge readers to read the review and politely e-mail Ms. Na expressing your concerns, if indeed you share them.

Most galling to me:

Picoult's portrait of Jacob is successful - but is it really likely that a person with Asperger's could be articulate enough to narrate his own world? Or is Jacob just a way to move the story along? People with Asperger's aren't supposed to be able to empathize with others, but Jacob sometimes seems to understand how his mother or brother or other characters feel.

"Is it really likely that a person with Asperger's could be articulate enough to narrate his [or her] own world?"

Looking over at the massive amounts of autistic biographies I have in multiple locations around my apartment, and the many autistic-written blogs I write daily, the answer seems to be an unqualified yes. Nor are those of us who are labeled "Asperger's" or "high-functioning" the only autistic people capable of expressing ourselves "articulately" (whatever that means) in writing. Nor are autistic people inapable of "narrating" in our own heads, regardless of our writing or speaking abilities or any other arbitrary category used to divide us.

Ms. Ma says the book educated her about autism--but clearly this "education" was rather incomplete.

Autistic Relationships: Some Thoughts

2010-02-20T12:14:00.000-08:00

Inspired by codeman38 and sarahgirl's posts about their relationships, in honor of Disability Blog Carnival #63 Relationships, I thought I would share some thoughts about my own autistic relationship.

[post contains possible spoilers for Adam and My Name is Khan]

My partner and I are both diagnosed autistics. We are a couple of two people who are supposedly incapable of having relationships. We are people who, according to the Maxine Astons of the world, can only bring misery to anyone we're partnered with.

There are no books or forums for people like us. Virtually all of the existing literature on autistics and romantic relationships assumes a neurotypical woman and a (very stereotyped) Asperger's autistic man. That is not us.

We don't do things the "normal" way. We met online, at a certain autism website. We had some difficulties in knowing how to touch each other at first, though we now do it all the time. Our idea of a great date often involves going to bookstores. We have silly repeated phrases, usually involving our cat, that we repeat to each other many times a day. We stim together.

And yes, there are difficulties. We are both disabled and trying to live semi-independently together. Sometimes this is very, very hard.

But we have made it work for three and a half years and counting--two "abnormal" people who are supposed to be incapable of real relationships. Neither of us has ever had a romantic relationship before.

Movies like Adam and My Name is Khan, from what I've heard, promote Aston-like views of autistic relationships: Ultra-neurotypical woman just can't handle being with an autistic man. And who can blame her? Autistic people are just so difficult. (Our difficulties, apparently, aren't worth noting.) Films like Mozart and the Whale are the rare exception.

(I should note here that I haven't actually seen either Adam or My Name is Khan, though I plan to. I am basing my summations off of other people's commentaries. And by "ultra-neurotypical," I mean someone who is portrayed as super-socially acceptable, capable of being empathetic in socially-recognized ways, etc. Usually this character is a woman.)

I think the Aston view is wrong. There are numerous examples of successful non-autistic/autistic relationships. But that's not really the subject of this post.

Because many people who are atypically-brained find love and companionship among our fellow neuro-atypical people. And I don't necessarily just mean autistic/autistic relationships. I'm talking about any number of possible relationships between autistics, people with ADHD, people with learning disabilities, people with Bipolar or other mental illnesses. In my experiences--not only in my relationship, but in friendships--these relationships with other neuro-atypical people are often invaluable. Not only because we may share particular perceptions of the world, but because we also have the shared experience of being marginalized due to one's neurology.

I'm not saying that every neuro-atypical person should seek a relationship with another neuro-atypical person. What I am saying is that these relationships are both common and valuable. We neuro-atypical people do not need to have a relationship with a "normal" person to make us normal by force or proxy. We can make our own kind of normal.

I Don't Want to Be Like You

2010-02-15T12:24:00.001-08:00

And by "you," I mean all of the people who share my diagnosis and are now up in arms over the proposed changes to the DSM.

Other people have already said what's wrong with the reactions of many "aspies" to the proposed changes.

The ableism on display from "aspies" who don't want to have the same diagnosis as Those People is rank, but sadly predictable.

Well, I may have an Asperger's diagnosis, but I don't want to be like Those Bigoted People. Alas, some of them are being touted as The Voice of Asperger's--indeed, some of them are among the famous "aspies" in our community.

Funny how so many are fine with stigma and prejudice when it's directed at Those Other People, but then create an uproar when they are at risk of becoming one of Those People. And I'm not free of blame myself. I confess to having held many of the same preconceptions when I was first diagnosed. I'm not proud of it.

And while I have since recognized the bigotry inherent in my previously-held views, I am not always able to express my anti-bigotry views as well as I would like. I really admire abfh and others who have conversations (in person!) with people who do not hold this viewpoint--or, indeed, who are actively hostile to it. But I don't know how to hold these kinds of conversations myself.

Here's an example: I recently talked to someone about my being on the spectrum. My relationship with this person is Very Important, and will likely to continue to be so in the future. Here's how it went:

Person X: [standard lines about how I am Completely Different From Those Low-Functioning People--and really, we shouldn't be in the same category]
Me: [some stammering] Well, I don't want to say, "I don't want to be like those people." I think that's discriminatory.
Person X: Yeah [in unusual inflection], but it's completely different.
Me: Well, maybe, but.... [assorted stammering]

I wish I could have better expressed my actual views in this conversation--and in several others I've had with other people. But I don't quite know how to verbally express these things. I know it's a privilege that I have, as someone who typically comes across as very "high-functioning," to dodge these kinds of conversations. And I want to stop hiding behind that privilege in these kinds of (admittedly difficult) situations.

Advice, readers?

Why I Like the Olympics

2010-02-14T18:32:00.000-08:00

Because of all the beautiful, spinning people. Wonderful visuals.

I don't think anyone this year will produce something as wonderful as this, however:

Airport Security Rants, Continued

2010-02-12T10:18:00.000-08:00

More on how airport security is crappy for disabled people:

Via FWD/Forward, I found this story about one woman's recent experiences with full body scanners. Lesson learned? If you have an atypical body and medical implants, you can expect for your body to be violated when you go through security. Also, TSA agents are entitled to know someone's medical history whenever they encounter something unfamiliar.

In the fictional realm, the new Bollywood movie "My Name is Khan" revolves around an Indian Muslim man, Khan (Shah Rukh Khan), who is an Asperger's s autistic and finds himself arrested at an airport for suspicious behavior. Certainly it does not require much imagination to imagine this happening in the real post-9/11 world. Racial profiling plus the identification of typical autistic behaviors with "suspicious behaviors" makes it so that these kinds of situations are just waiting to happen--and perhaps already have. In fact, the movie was apparently based off of an incident of racial profiling which Khan the actor--who is presumably neurotypical--experienced. I haven't yet seen the movie myself, but I hope to. I'm particularly interested because this is one of the few movies centered around an autistic character who is not white. Should be interesting viewing, and hopefully Bollywood will prove better than Hollywood in avoiding stereotypes.

The fight against "terrorism" has, in certain arenas, violated basic human rights. It's that simple.

Sarah Palin is No Ally of Mine

2010-02-10T11:40:00.000-08:00

As many of you have probably heard, Sarah Palin is calling for Rahm Emanuel's resignation because of his pejorative use of the r-word. While I agree with Palin that Emanuel's comments were ableist and inexcusable, I couldn't help but be suspicious of her motives.

Now, it seems, these suspicions have been confirmed. Known hate monger Rush Limbaugh, in response to Emanuel's ableist, anti-liberal remarks, decided to agree with Emanuel for once, and added remarks which were even more ableist. (Go to the link to read the comments; I do not wish to repeat them here.)

Palin's response to this was to defend Limbaugh. Because for her, ableism is only worth calling out when liberals and Democrats do it.

Why is this hypocritical, ultra-partisan politician being advanced as an advocate to disability rights? Sarah Palin may have a child with a disability, and yes, she got it right with regards to Emanuel's ableism. (Though calling for his resignation was a little much, in my opinion.) But she's made it pretty clear that her primary loyalties lie with a particular brand of ultra-conservatism and her own political advancement. Her occasional acknowledgment of disability issues is just a way for her to get her name in the news and promote that agenda.

Palin is no disability rights advocate or ally.

The people who deserve to be recognized for their activism with regards to the Emanuel issue are Julie Petty and Ricardo Thornton, two self-advocates who met with Emanuel and urged him to take the pledge to remove the r-word from his vocabulary. Unfortunately, Ms. Petty and Mr. Thornton have too often been ignored in media coverage of these events. Palin, meanwhile, has successfully placed herself at the center of the controversy.

When will self-advocates be recognized to the same extent as hypocritical right-wing politicians?

This is What Ableism Looks Like

2010-02-07T21:34:00.000-08:00

My worried frenzy about the new Jodi Picoult book continues. With a bit of googling, I found this list of book club discussion questions. [warning: may be spoilers in link.] Here's one of the questions:

Do you know anyone with Asperger's syndrome? Did the descriptions of Jacob fit what you know of that person?

Let us count the ableist assumptions: First and most glaringly, there's the assumption that autistic people won't be reading the book. There's also the more unspoken assumption that the descriptions of this one character ought to match the way "real" Asperger's autistics are. Because we're all the same, you know.

This is the sort of offensive shit that the non-autistic-person-as-default assumption perpetuates.

A note to about.com Book Club Discussion: We read. And we're not carbon copies of each other. Kindly cease with the ableist assumptions.

Jodi Picoult and Ableism or Oh No!

2010-02-05T16:07:00.001-08:00

I come bearing terrible news. Jodi Picoult, the popular ultra-melodramatic novelist, has discovered Asperger's Syndrome. Her newest novel, House Rules, is about a family in which the 18-year-old son, Jacob, is an Asperger's autistic and ends up being suspected of murder. By the sounds of it, it has all the makings of a typical Picoult book: legal drama, family drama, ableism.

[NOTE: The following post contains some spoilers for Jodi Picoult novels, particularly My Sister's Keeper and Handle With Care.]

I admit, with some embarrassment, at having read several Picoult novels. You can criticize Picoult's sappy prose and contrived plots all day, and you'd be right. But the woman does have a knack for producing long stories that make you want to read more. I have to give her that. But now that she's turned her tragedy-efying gaze to autism, I'm just pissed.

In that, I guess I now know something about how people with leukemia (past or present) and osteogenesis imperfetta felt about Picoult's previous books. My Sister's Keeper, the book which put Picoult on the literary map, riveted audiences--including me, I have to admit--in its fascinating explorations of a modern-day ethical conundrum: is it okay for parents to use genetic selection to have a child who is a perfect match for an already-existing child whose life depends on it? And when it comes to one child donating blood, platelets, bone marrow, and organs to the other, what are the donor child's rights? How much is too much? This question in and of itself is not necessarily ableist, in my opinion, but in Picoult's hands it becomes so. The book is full of content which basically states that the life of someone with difficult-to-treat leukemia isn't worth living. It's offensive. It's ableist. And one tell-tale sign of its ableism is Picoult's failure to give the character with disabilities a voice until the very end of the book. Kate is an object of pity, an object which makes her family member's lives more difficult, but she herself is denied a voice--except to say that she doesn't want to live anymore. (Yes, yes, this is a bit of an oversimplification, but not much of one.)

In Handle With Care, Picoult ratchets up the ableism to another level. The novel deals with the question of wrongful birth lawsuits--lawsuits in which parents of a disabled child sue their obstetricians for failure to prenatally diagnose the disability. The whole premise of such lawsuits is that the birth of the disabled child is "wrongful"--that parents would have aborted said child if they'd known about the disability. Picoult takes the question of whether it's ethically acceptable for parents to bring a wrongful birth suit--a question with a self-evident answer, if you ask me--and turns it into a huge ethical drama. We get hundreds of pages which amount to a dramatized discussion of the value of the life of someone with OI. And, as in My Sister's Keeper, the actual character with a disability (Willow) is rendered as an object of pity and philosophical debate. She herself has no real voice--until the end of the book, in which she narrates as she drowns herself in what may or may not be intentional suicide. I only wish I was kidding about this. Picoult is characteristically ambiguous, and I admit that it's certainly possible to interpret the ending as a tragic but natural response to the ableism of a wrongful birth suit. But this is by no means clear in the narrative. Picoult's method of "showing both sides" on these ethical issues amounts to moral cowardice and ableism in this instance.

If I had the time and inclination, I could no doubt continue to explain why these books are so problematic from a disability-rights standpoint. In fact, I had thought about writing a blog entry about Handle with Care when I first read it almost a year ago. That my anti-Picoult energies have been most forcibly stirred by Picoult taking on autism/Asperger's is, I'm afraid, a sign of my own empathic failures (though not in a Simon Baron-Cohen-type way). I want to make clear the fact that the ableism against people with OI in Handle with Care is no less despicable than the forthcoming ableism against autistics in this new book. House Rules, worryingly, looks to be a continuation of the pattern of ableism in Picoult's ever-popular novels.

While some people may criticize me for assuming the worst of House Rules, I would point out that Picoult's record on disability-issues doesn't make me terribly inclined to give her the benefit of the doubt. And in any case, Picoult (or her marketing team) have kindly made an excerpt of the book available on her website, so that I can comment on it without buying it. (Indeed, the book is not out until next month.)

From what I can tell, House Rules may very well be better than its predecessors in giving voice to the character with disabilities. The autistic character, Jacob, seems to be getting considerably more narration time than Willow or Kate got. Unfortunately, it seems as though we might have to be worried that Jacob, like too many other autistic fictional characters, is a laundry list of every single autistic trait instead of an actually developed human being. (Let's be clear: no one has every single autistic trait, partially because some traits are mutually exclusive.) House Rules may well end up to be better on this count than The Curious Incident of the Dog in the Night-Time, but perhaps not. It's not a terribly high standard, at any rate, and all of this is an outsider's view of autism. Which won't stop everyone I tell my diagnosis to from now on from comparing me to Jacob, of course. Grr.

Based on the excerpt itself and a review, it seems as though Picoult will be taking on all of the controversial issues of the autism world, including whether Asperger's is autism and possibly the whole cure question. It also seems as though the story, unsurprisingly, largely revolves around how the poor non-autistic family members have to deal with the terrible burden of having an autistic relative. Sigh.

I submit this excerpts as disturbing examples of the ableism which is very likely present in the entire book:

The mother:

In my mind, Asperger’s isn’t a label to describe the traits Jacob has, but rather the ones he lost. It was sometime around two years old when he began to drop words, to stop making eye contact, to avoid connections with people. He couldn’t hear us, or he didn’t want to. One day I looked at him, lying on the floor beside a Tonka truck. He was spinning its wheels, his face only inches away; and I thought, Where have you gone?

The brother:

I have twenty-four stitches on my face, thanks to my brother. Ten of them cut through my left eyebrow, thanks to the time that Jacob knocked over my high chair when I was eight months old. The other fourteen are on my chin, from Christmas 2003, when I got so excited about some stupid gift that I crumpled the wrapping paper, and Jacob went ballistic at the sound. The reason I’m telling you this has nothing to do with my brother, though. It’s because my mother will tell you Jacob’s not violent, but I am living proof that she’s kidding herself.

Jacob himself:

I was diagnosed with Asperger’s Syndrome long before it became the mental-health-disorder-du-jour, overused by parents to describe their bratty kids so that people think they’re supergeniuses instead of simply antisocial.

[...]
At different times, the media has posthumously diagnosed certain famous people with Asperger’s. Here is just a sampling:

Wolfgang Amadeus Mozart
Albert Einstein
Andy Warhol
Jane Austen
Thomas Jefferson

I am ninety-nine percent sure not a single one of them had a meltdown in a grocery store and wound up breaking a whole shelf of relish and pickle jars.

I think I've made it pretty clear on this blog that I'm not a fan of historical diagnosing, but this excerpt opposes it for all of the wrong reasons. Because you couldn't possibly be autistic and a great artist/scientist/statesmen. (And also, I'm pretty sure that one reason why Mozart, Einstein, Austen, and Jefferson never had a grocery store meltdown is because there was no such thing as grocery stores when they were alive.)

Ms. Picoult, I'm one of those demon autistic children whose had meltdowns in grocery stores (and other places, too). But now that I know I'm autistic, I don't think of myself as defective for it, and I don't think I'm unique in this regard. You may consider us defective for our oddities--oh, excuse me, "symptoms"--but we do not.

If this excerpt is any indication of what House Rules has in store for us, I am seriously concerned. With the combination of Picoult and autism, the book is virtually guaranteed to be a best-seller, blighting my vision when I enter Barnes & Noble for months to come.

Also, I want to stop myself from actually buying it. I say this with my head hanging in shame.

New Study on Bullying: Water is Wet

2010-02-04T16:58:00.000-08:00

Yahoo! News reports an apparently newsworthy and ground-breaking new study: kids who get bullied are more likely to have difficult understanding nonverbal communication. (By which they mean "normal" nonverbal communication, of course.)

This is supposed to be news?

While I support respectful, pro-neurodiversity social skills education for children who have struggles in that area, the article and researchers' comments sound like a lot of victim-blaming to me. The whole study's design is designed around ableist victim-blaming, in fact: let's figure out bullying by identifying what's "wrong" with the victims. G-d forbid we look at what the bullies themselves are doing. This kind of thinking, though perhaps grounded in pragmatism, naturalizes bullying and puts the responsibility for preventing bullying solely with the victims--you know, we defective people who don't understand social communication in standard ways.

To teach social skills, Lavoie advises a five-step approach in his book "It's So Much Work to Be Your Friend: Helping the Child with Learning Disabilities Find Social Success" (Touchstone, 2006). The process works for children with or without learning disabilities and is best conducted immediately after a transgression has been made.
1) Ask the child what happened and listen without judgment.

2) Ask the child to identify their mistake. (Often children only know that someone got upset, but don't understand their own role in the outcome.)

3) Help the child identify the cue they missed or mistake they made, by asking something like: "How would you feel if Emma was hogging the tire swing?" Instead of lecturing with the word "should," offer options the child "could" have taken in the moment, such as: "You could have asked Emma to join you or told her you would give her the swing after your turn."

Got to love the assumptions here. If a kid is treated badly by one of hir peers, it must be the kid's fault. They, apparently, are the ones who did something "wrong." Not the actual perpetrators of physical and verbal abuse.

This is not harmless rhetoric. These are the sort of attitudes which cause the victims of bullying to remain silent about their experiences to parents, teachers, and other authority figures. Because of the pervasive assumption that it's all our fault, anyway.

For these researchers, fixing the problem of bullying involves "fixing" the victims to make them more socially acceptable.

What about making the act of bullying socially unacceptable?

I look forward to the day when bullies are pathologized to nearly the same extent as various social misfits are.

Irony

2010-01-28T11:53:00.000-08:00

The same people who bemoan the supposed "lack of safety testing" with regards to vaccines are going to be among the most vociferous defenders of a physician who experimented with children.

This particularly noxious form of ableism in the anti-vax movement has been striking to me for a long time. The same people who claim that vaccines haven't been tested to their idiosyncratic standards are the first to support giving autistic children untested, potentially dangerous "treatments." The message is clear: Standards of medical and research ethics are only important for (allegedly) "normal" children. If you're an autistic kid, parents and "doctors" have the right to experiment on you and try dangerous and unproven "treatments" on you as much as they please--scientific standards and ethics be damned.

When will anti-vaxers hold biomed practitioners to a fraction of the (impossibly high) standard they set for vaccines?

Book Review Series: The Ethics of Autism

2010-01-27T12:35:00.000-08:00

This may (or may not) be the first part in a series discussing The Ethics of Autism: Among Them, But Not of Them by Deborah R. Barnbaum (Indiana University Press, 2008).

I picked up this book a few weeks ago because it caught my attention. When I first looked at it I hoped, despite a few indicators to the contrary, that there would be some pro-neurodiversity content.

After now having read the introduction, I have to doubt that. The introduction is full of the "Theory of Mind" claptrap, which it uncritically accepts. Accepting this premise, the introduction continues to muse philosophically about autistic people and membership to "the moral community," basically indicating that some kind of new theory is needed in order to accommodate autistic people. This is apparently the subject of Chapters 1 and 2, which I have not yet read, and hence I can't speak much to Barnbaum's reasoning. But I have to say that I find these kinds of questions incredibly irritating and dehumanizing. Autistic people do not need non-autistic people (using simplistic schematics of autism devised by other non-autistic people) to theorize in order to recognize our humanity or membership to "the moral community" or however else you want to put it. Barnbaum herself describes this series of issues as "questions about the value of autistic lives" (8). Hello, academic ableism.

The rest of the book doesn't look much more promising, based on Barnbaum's overview. I get the impression that she thinks she's inviting discussion on a bunch of Profound and Fascinating Topics. I don't see it; the ethical answers to her questions seem rather self-evident to me. The question of who should decide (and whether) to administer a "cure" to autistic adults should one become available seems pretty basic--unless one shares Barnbaum's bizarre assumptions that autistic people are completely noncomparable to non-autistic people and may not be true "agents." Heck, even many anti-neurodiversity folks are against forcibly curing an autistic adult who communicates (in a socially recognizable manner) the desire to not be cured. Yet this is a cutting-edge question in bioethics?

While the introduction concludes with some vaguely pro-neurodiversity sentiments, I find them pretty dissatisfying in light of the various postulations which precede them.

Why is our personhood and right to autonomy up for debate?

Even if Barnbaum does have some (peculiar) kind of pro-neurodiversity sentiment, her project seems to be entirely misconceived. She starts with presumptions which treat autistic people and non-autistic people as beings from separate planets, are overly simplistic, and are silencing of autistic voices.

It is this last problem which is most damning. When I first saw the book, I was pleased to see that she included sections entitled "Voices of Autism" centered around individuals, including Jim Sinclair. I assumed that the book featured writings from Sinclair and other autistic people. Wrong. It turns out that the "Voices of Autism" sections are nothing more than brief biographies of said autistic people, including very short summations of their views, and typically a few short quotes. Is this Barnbaum's method of showing autistic perspectives--which are sorely lacking in the main text? If so, it feels blatantly tokenistic and patronizing. Acknowledging autistic people as agents demands taking seriously our perspectives throughout an analysis such as this--not boxing off a few biographies between chapters.

Barnbaum, it seems to me, isn't writing about the ethics of autism. She's writing about the ethics of autism as perceived by a variety of non-autistic "experts." Which is an entirely different issue--and a purely theoretical one, at that.

I'd also note that I'm not entirely comfortable with the tendency to use (perceptions of) autism to discuss wider ethical questions. Disability is not your analogy.

Serious discussions of autism and ethics cannot happen in forums where the terms are set--by non-autistic people--in an inherently dehumanizing way.

I may or may not continue to read the book and blog about my thoughts on it. I won't make any promises on that one--my time for discretionary reading is limited, and I'm not sure I have the fortitude to continue with this one.

Mythbusters: Gary McKinnon Edition

2010-01-22T15:40:00.000-08:00

In response to various comments I've seen floating around the autistic community, I'd like to post about Gary McKinnon for only the second time in this blog's history. I myself was not very well-informed about the case until today, so I thought I would post some of what I've learned here. (The link is to McKinnon's Wikipedia entry, which I think is actually fairly free of bias.)

Myth: McKinnon didn't understand he was committing a crime (due to impairments in understanding social rules).

Fact: McKinnon did understand the criminality of his actions, as evidenced through his repeated "notes" (and threats) to U.S. military officials. Consider these words, which McKinnon has admitted to leaving:

"US foreign policy is akin to government-sponsored terrorism these days? It was not a mistake that there was a huge security stand-down on September 11 last year...I am SOLO. I will continue to disrupt at the highest levels." [emphasis mine]

While his statements are a bit difficult to unravel due to McKinnon's conspiracy theory about September 11, I think it's pretty clear that these are not the words of a person who is unaware of the criminality of his actions. He wanted to "disrupt."

Myth: He may have been experiencing an irresistible, OCD-like compulsion in hacking. Sometimes autistic people feel that way about their special interests.

Fact: McKinnon's actions were performed over a number of days. He also resumed hacking just a few weeks after September 11. (Yet more evidence that he knew what he was doing. The timing is unlikely to be a coincidence.) These "compulsions" were spread out over time, thereby making his actions repeated crimes (at least 97 times). If this were just a one-time transgression, I would be more sympathetic. But McKinnon had ample time to consider the ramifications of his actions and redirect his energies towards legal activities. He chose not to.

Myth: A psychiatrist has said that McKinnon will kill himself if extradited. Therefore, he should not be extradited.

Fact: The second statement does not necessarily follow logically from the first. There are other ways to prevent suicide, regardless of what potentially biased psychiatrists have to say about it. McKinnon's supporters too often pose a false choice: Extradite him, and he'll commit suicide, or don't extradite him. There are other choices. I am in favor of providing McKinnon with reasonable accommodations in his incarceration. Avoiding extradition altogether isn't an accommodation, but a "get-out-of-jail-free" card.

Myth: McKinnon was on U.K. soil when he committed the crime, so he shouldn't be tried in the U.S.

Fact: While it is technically true that McKinnon was physically present in the U.K., the crime was actually committed via the Internet, which knows no national boundaries. This argument is a distraction which obscures the real issues involved in Internet crime. For goodness' sake, the crime was against the U.S. Department of Defense. How is that not an offense against the U.S. government? Certainly technology has led to a number of ambiguities in terms of criminal jurisdiction. Numerous transnational treaties have established laws for dealing with precisely this kind of situation. This brings me to the next point...

Myth: It's outrageous that a U.K. citizen is being subjected to this kind of treatment. It's all the fault of evil Americans. (paraphrased)

Fact: The democratically-elected British government agreed to these treaties. They were not simply imposed on the U.K. by the Big Bad U.S.

I'm an American citizen who is highly critical of a number of my government's policies and practices. I'm rarely (never) accused of being a nationalist of any kind. But oftentimes in reading commentary on the McKinnon case, I'm struck by the belligerent anti-Americanism. Reading some of these comments, one would think that the rest of the world (including Great Britain) is a land of sunshine, roses, and total liberty--except when infringed upon by the terrible Americans, of course. And to this I have just two words, and they are "bull" and "shit." Non-American countries have done plenty to contribute to human misery and loss of liberty. Let's stop making the U.S. the only villain, and idealizing other nations to ridiculous extremes.

And let's stop making this case a primary focus of autism advocacy. There are many autistic adults who are some combination of homeless, unemployed, or institutionalized. But apparently, the only autistic adults worthy of extended advocacy campaigns are those who have committed international crimes.

More on Baron-Cohen

2010-01-20T13:05:00.001-08:00

A few bloggers have interesting responses to my post about the incoherency Simon Baron-Cohen's proposed diagnostic criteria.

Amanda Forest Vivan at A Deeper Country goes through the criteria and points out several problems, including the fact that Baron-Cohen's prototype of an Asperger's autistic just sounds like an asshole.

My favorite excerpt: "I don’t understand why SBC even claims to be studying AS at all because he’s just studying 'people with bad social skills.' That’s all he thinks it is."

Quoted for truth. The experience of being on the spectrum involves much more than social cluelessness, yet Baron-Cohen insists on a reductive explanation of autism which brings everything back to his silly theories about "mindblindness" and "lack of empathy." At some points when I read his work, I rather get the impression that he thinks autistic people are sociopaths. For instance, he seems to be under the impression that the typical autistic person isn't bothered by seeing an animal in pain. This fills me with rage I can only begin to describe in words.

Astrid further discusses Baron-Cohen's nonsensical views on fiction.

Key quote: "Imagination, after all, only counts insofar as Baron-Cohen can imagine it."

Zakh Price & Restraint and Seclusion

2010-01-16T11:12:00.000-08:00

Thanks to Emily at A life less ordinary, I've looked at the police report for the arrest of Zakh Price.

Key part:

Jan said Zak pushed her to the ground when Principal Siebenmorgan tried to help restrain him.

So Zakh's "battery assault" was in response to being restrained himself.

Why aren't the school staff members being charged with a crime? Or at least having their actions investigated? Why isn't there an acknowledgment that Zakh was acting in self-defense?

Lessons learned: "Normal" people in positions of power can physically restrain (abuse) children with disabilities without consequence. Children with disabilities who resist this kind of treatment are criminals.

Let's help change this egregious system which permits abuse by supporting the Preventing Harmful Restraint and Seclusion in Schools Act. This Thursday, let's call our representatives in Congress and let them know that we want them to co-sponsor this legislation. How many Zakh Prices and Jonathan Kings must there be before our government decides that disabled children are deserving of protection?

Diagnostic Criteria, Stereotypes, and Invisibility

2010-01-12T16:47:00.000-08:00

I was recently made aware of "new" diagnostic criteria for adult Asperger's Syndrome, developed by Simon Baron-Cohen and his team. While I was pleased to see that some researchers are actually paying attention to adult issues, including the issue of diagnosis, numerous aspects of the research itself were troublesome to me.

Long-time readers will know that I have some disputes with Baron-Cohen. These are not simply ideological disputes--I believe Baron-Cohen to be a sloppy researcher and frankly am amazed that he is considered to be an "expert" in the field of autism. His eminence in the field does not speak very well of the autism research community's ability to produce quality research free from stereotypes and assumptions. And Baron-Cohen, of course, produces stereotypes on at least two fronts: gender and neurotype.

When reading Baron-Cohen's work, published in 2006, I couldn't help but wonder what is actually new about the criteria he is proposing (hereafter referred to as AAA, Adult Asperger Assessment). Because the criteria itself largely looks like a more specific and stringent version of the DSM IV; there does not seem to be much attention to adult-specific issues, and there certainly isn't much attention to gender-specific issues. Gender issues nevertheless pervade the report in ways which are not adequately addressed.

This study has a male/female ratio of 9:1 (rounded down). This ratio is, quite simply, horse manure, and even many researchers and clinicians are beginning to recognize it as such. The gender ratios for other forms of autism are often closer to 4:1. Why would Asperger's autism have a gender ratio more than twice that of other forms of autism? Baron-Cohen is simply regurgitating old, tired ideas about Asperger's autism, including the outdated 10:1 ratio.

Moreover, Baron-Cohen's definition of Asperger's autism is clearly infused with very stereotypic notions about autism which are both confining and expressed in a way which clearly portrays autistic people as defective normal people. I remain flummoxed why so many autistic people see Baron-Cohen as a pro-neurodiversity figure. At best, he's promoting a very shallow concept of neurodiversity which suggests that we're only valuable in so much as some of us are talented engineers and mathematicians. Our worth is not contingent on our abilities, or our disabilities, but rather our common humanity and rights which we share with all other human beings.

When so many professionals already have silly stereotypes about autistic people, I can only hope that Baron-Cohen's "AAA" criteria do not take hold. While there are certainly issues with the DSM IV, at least it does not suggest that all autistic people lack imagination and read only certain kinds of books.

It is this part of criteria (part D) which is most troubling to me, and also the part where Baron-Cohen's ridiculousness is most apparent. See D1:

Either lack of interest in fiction (written or drama) appropriate to developmental level or interest in fiction is restricted to its possible basis in fact (e.g. science fiction, history, technical aspects of film.)
-doesn't particularly enjoy reading fiction
-would rather go to a museum than the theatre

This particular criteria conveniently embodies everything that's wrong about Baron-Cohen's AAA. Therefore, I will analyze it in detail:

1. The wording seems more appropriate to children than to adults. When we're talking about adults, "developmental level" hardly seems like appropriate terminology. You rarely hear people discuss "developmental level" in regards to neurotypical adults. What is "appropriate development" for adults in terms of reading preferences and is it any different at 65 than 22?

2. What defines "appropriate developmental levels" in terms of reading at any age? Is the adult who loves Harry Potter (i.e. me) not reading according to hir "appropriate level"? Is the advanced reader who reads the classics at age 8 not appropriate? What about autistic people with dyslexia or other learning disabilities?

3. Baron-Cohen tries to be more specific than the DSM IV, but ends up being even more vague in many ways. How is it diagnostic to prefer going to a museum rather than a theater? And heck, how are these abstractions meaningful in any way? There are lots of different kinds of museums, and lots of different films/shows shown at theaters. If I were asked this question in a diagnostic assessment, I would say that I need much more detail in order to answer this question. What kind of show or movie would I be attending? What kind of museum would I be visiting? What would the situation be like sensory-wise at both locations? What about autistic people who like going to watch documentaries (non-fiction) or lectures in theaters? Doesn't that totally challenge Baron-Cohen's simplistic ideas?

I may be an Official Asperger's Autistic, but I definitely would not be interested in going to a crowded and noisy museum regardless of what was being exhibited. I certainly wouldn't want to go in a museum with subject matter that I find uninteresting. I do, however, often enjoy going to movies and musical productions if it's something I want to see. Blanket assumptions such as those made by Baron-Cohen are ultimately rather useless.

4. Why are certain forms of fiction (i.e. science fiction) arbitrarily exempted from the category of "fiction"? Because this makes absolutely no sense at all, when we look at it without preconceived stereotypes. How is a book about aliens and spaceships any more "restricted to its possible basis in fact" than a story about living in modern-day New York City? If anything, the contemporary story is clearly more rooted in fact. In his attempt to perpetuate the stereotype that autistics "lack imagination" and don't read fiction, except for those sci-fi geeks, Baron-Cohen ends up producing a diagnostic criteria which is silly and nonsensical. This, folks, is diagnostic gerrymandering at its finest, and it needs to be vigorously opposed.

While I am not in the habit of endorsing Orson Scott Card's opinions, he nevertheless brings up many great points about fantasy, science fiction, and gender in How to Write Science Fiction & Fantasy. Basically, Card questions the utility of drawing the distinction between fantasy and sci-fi, pointing out that the main difference between them is that one uses machines and the other uses magic. Is there really a difference, say, in a time-travel story that uses a magical spell as opposed to one which uses a time machine? Even if the stories are otherwise comparable? Can we really say that one has more "basis in fact" than the other? To me, and to Card, the answer is, "not really." There are certainly differences in popular associations of sci-fi and fantasy, including a very gendered conception. ("Girls like fantasy, boys like sci-fi.") But, both ultimately, are two facets of the same genre of fantastical adventure. Even bookstores recognize this, typically putting sci-fi and fantasy books in the same section. Many magazines, likewise, are for both science fiction and fantasy.

Baron-Cohen--who I doubt is very familiar with either subgenre--is insistent on separating science fiction out as not-fiction, in the interest of perpetuating stereotypes. This distinction isn't really an intellectually valid one, however, and merely points to Baron-Cohen's own tendency to stereotype autistic people--oftentimes in a way which renders autistic girls and women relatively invisible.

And this doesn't even get to the arbitrary distinctions between literary and genre fictions! (i.e. the idea that Margaret Atwood is a literary author, while Octavia Butler is just a really good sci-fi writer. Again, this doesn't make much sense.)

Baron-Cohen's insistence on separating out "history" from fiction is equally curious to me. I don't know if he means history billed as nonfiction--in which case he is suggesting the old idea that all history is essentially fiction. (As an aspiring historian, I cannot support this assertion.) If he is referring to historical fiction, then this is yet another instance of nonsense and silliness masquerading as legitimate diagnostic criteria. Most books explicitly labeled historical fiction bear very little relation to history. Again, there is a much sounder argument that contemporary novels bear greater relation to reality, however we choose to define it.

If anyone here is displaying "impairments of imagination" here, I think perhaps it is Baron-Cohen. He cannot imagine Asperger's autistic people outside of his male engineer/sci-fi geek paradigm. This does not mean that we lack imagination, that the only fiction we read and watch is of the explicit sci-fi variety, or that only 10% of us are female. There is much evidence which suggests otherwise.

Baron-Cohen has repeatedly shown a willingness to allow his pre-existing assumptions to interfere significantly with his researcher. This does not make for good science or sound neurodiversity advocacy.

A Sad Story, and a Call to Action

2010-01-05T16:15:00.001-08:00

If you listen to anything autism- or disability- related today, listen to this interview with Carole Reynolds, whose 11-year old autistic grandson Zakhquerey Price is facing felony charges for allegedly injuring two staff members at Beard Elementary (Fort Smith, AK) while said staff members were trying to restrain him.

Zakh's story is really heartbreaking, and demonstrates so many problems with public education, the system of mental institutionalization, and criminal justice system.

Zakh has already faced years of forced institutionalization, including during a period in which he and his family mourn the loss of his sister. Now, he faces criminal charges without adequate legal representation. His family cannot afford a private lawyer, and the public defender assigned to his case does not know much about autism. With the current situation, there is a strong chance that Zakh will be institutionalized against the will of his family again. Zakh has already faced years of institutionalization due to a school system which wants to not educate him. He has also been institutionalized during a period in which he and his family are mourning for his younger sister, who died during his period of incarceration in mental institutions.

What can we do to help?

You can donate to Zakh's family so that they might obtain adequate legal representation.

You can contact media outlets about this situation.

You can join the Facebook group to follow the situation and see what else we can do to help Zakh and his family.

This is urgent. Zakh's case is on January 12.

We need to do whatever we can to help.

Oh, Goody...

2009-12-29T18:37:00.000-08:00

More celebrity diagnosing, this time from an actual doctor, though his credentials in autism/Asperger's Syndrome are questionable, to put it very mildly. This time the diagnosed individuals are Tiger Woods, Bill Clinton, John Edwards, and Eliot Spitzer. Apparently Dr. Goulston misplaced his copy of the DSM IV and thinks that adultery is a symptom of being on the autism spectrum. To his credit, Goulston did offer an apology, which I commend him for. Goodness knows we've seen too many writers on this blog who have refused to apologize for their hurtful, offensive remarks.

But Goulston, I feel, could do better and he is still guided by some fundamental misconceptions about autistic people. He writes, "I would however be curious to ask those who have responded to my prior blog if the pain is tied to feeling the pain they have caused in others or is it do to feeling they have done something wrong and are embarrassed." Dr. Goulston, you have access to the Internet. You have access to numerous published accounts in which Asperger's autistics have discussed their feelings--yes, feelings--and ways of understanding the world. In trying to apologize, don't continue to treat the population you've offended as test subjects you want to test your hypothesis on. Clearly, you don't know very much about autism. Why don't you listen to those who do rather than continuing to make offensive assumptions? And yes, the way this question is phrased is still offensive. Making us the subjects of your blog posts is not a particularly honorable or respectful way of getting to know our way of thinking. A clinician such as yourself should surely know better.

Celebrating the Holidays, Neurodiversity-style

2009-12-24T12:28:00.001-08:00

I'd like to wish all readers a happy holidays, regardless of what you might celebrate. (I know for Channukah this is on the late side.) I'd also like to suggest a great way to celebrate the holiday season with a little pro-neurodiversity activism. Write your Senators expressing your delight with Ari Ne'eman's appointment to the National Council on Disability. Simply sign up on Congress.org, and you'll be able to directly contact your representatives.

I also highly recommend this post from Left Brain/Right Brain, and encourage readers to pass it along to those who are skeptical and critical of Mr. Ne'eman's nomination. Comments which Mr. Ne'eman has made on this very blog disprove a lot of the nonsense being bandied about in regards to his views.

It amazes me that so many people in the "biomed" or even the wider autism community don't involve themselves in disability issues, don't acknowledge autism as a permanent disability, and then get irritated when they don't approve of the nominations for the National Council on Disability. Good riddance.

Is there really a problem with diagnostic "abuse"?

2009-12-11T09:54:00.001-08:00

RiShawn Biddle of The American Spectator thinks that learning disabilities are overdiagnosed (among males):

Nineteen percent of black male students and 16 percent of their white male peers attending Cleveland's public schools in the 2005-2006 school year were labeled with some form of learning disability. This meant that they were likely placed into the traditional public school district's special education program, from which they are unlikely to ever graduate with a high school diploma.

From reading this article, I'm not sure Biddle understands what "being in the special education system" means. For many kids, being in the special education system means something as simple as having an IEP and receiving extra time on tests. On what basis does he claim that special ed students are "unlikely to ever graduate with a high school diploma"? For many students, accommodations help them to succeed.

Now, I agree that too many students are being put into segregated classes where they almost inevitably receive inferior educations. This is a problem which needs to be rectified. But Biddle's categorical condemnation of too many kids--by which he means boys--being in the special ed system is perpetuating the stigma which comes along with being diagnosed with a learning disability. ("Learning disability" in a broad sense. For many people autism isn't a learning disability per se as much as it is a disability in other areas, including areas which may make school difficult.)

And there is, of course, a significant gender dimension to this argument. Biddle is concerned about boys in particular:

Boys are particularly vulnerable because their natural rambunctiousness is of great contrast to the more-docile behavior of their female classmates.

I've heard various iterations of this argument before--boys are disadvantaged in the current school system because of the emphasis on "good behavior." I am somewhat sympathetic to certain aspects of this argument. The racial disparities which Biddle calls attention to are particularly troublesome, and indicative of clear racial biases in defining "problem children." But Biddle's refusal to acknowledge that receiving accommodations can be a good thing leads to a rather skewed presentation of the issue.

Most notably, Biddle misses the problem of girls who may need accommodations as well. Just because a girl may appear "docile" much or all of the time does not mean she doesn't have a neurological disability, or that she wouldn't potentially benefit from accommodations and other services. Biddle frames the issue as an overdiagnosis of boys while missing the issue of girls' underdiagnosis.

Having grown up in the U.S. K-12 system during the early years of greatly expanded special ed services, I am convinced that neuro-atypical boys and girls do indeed receive disparate treatment. I won't say there's across-the-board privileging of males, given how messed up the special ed system is, but in many cases girls are underprivileged, underdiagnosed, and underaccommodated. For about 95% of the time, I was one of those docile girls who didn't seem to need special accommodations. The rest of the time I often melted down spectacularly, and very noticeably, but no one thought this was a sign of a neurological disability. The school told my parents to take me to a therapist to work out my Problems, but did not suggest any kind of diagnostic battery for disabilities. Often, girls have Emotional Issues, to be fixed only by therapy, while boys have officially recognized disabilities which mean they receive accommodations. And in my case, I definitely noticed that I was being treated badly because I Had Emotional Issues. I learned to hide my problems from teachers and guidance counselors, to a significant extent, because creating my own accommodations worked better for me. I certainly didn't want to be further subjected to the pain, humiliation, and teasing that came along with having my problems openly acknowledged. And, of course, hiding my problems meant that they went even more unnoticed. People thought I'd "gotten better" because of the therapy, but the underlying disabilities were still present.

How many girls are hiding their problems? How many girls are having their problems misinterpreted? And how many of them seem like "docile girls" much of the time?

While there are a few valid points buried in Biddle's commentary, overall his article does not demonstrate a very complete understanding of the issues, and perpetuates disability stigma and the privileging of male experiences.

No one, male or female, should receive an inferior education because they're diagnosed with a disability. But it's not diagnosis which is the problem as much as the way people react to it. In many ways, increased recognition is a good thing for kids who would otherwise struggle, or be treated as Naughty Children. Stigma, prejudice, and segregation are the real problems and the real instances of "abuse." And I mean this to apply to race as well as disability.

Not being diagnosed is not a privilege in and of itself. Girls are not categorically privileged by virtue of their gender. There is actually considerable evidence to suggest that the reverse situation is occurring in many circumstances.

The real solution to the problem, however, lies in making classrooms more universally accessible from the start. Certainly I won't deny that this will take a great deal of work and planning. But universal design is ultimately of benefit to everyone. Including "rambunctious boys."

Denigrating Self-Diagnosed People Means Denigrating All of Us

2009-11-26T09:04:00.000-08:00

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

2009-11-25T09:22:00.000-08:00

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

2009-11-22T19:10:00.001-08:00

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

2009-11-19T16:03:00.000-08:00

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

2009-11-14T14:24:00.000-08:00

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

2009-11-13T20:08:00.000-08:00

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

Also, cats are awesome.

Best Online Shop Ever

2009-11-11T15:01:00.000-08:00

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

2009-11-10T17:50:00.000-08:00

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

2009-11-06T15:54:00.000-08:00

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

2009-11-04T09:58:00.001-08:00

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.

On Passing and Not Existing

2009-10-29T16:04:00.000-07:00

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

2009-10-21T10:22:00.000-07:00

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

2009-10-14T22:02:00.000-07:00

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

2009-10-12T22:51:00.000-07:00

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?

2009-10-12T11:38:00.000-07:00

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...

2009-10-10T17:43:00.000-07:00

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

2009-10-09T19:38:00.000-07:00

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

2009-10-04T18:10:00.000-07:00

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

2009-10-01T08:27:00.000-07:00

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?

My Bit of Activism Today

2009-09-29T16:05:00.001-07:00

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?

2009-09-25T10:01:00.000-07:00

(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

2009-09-22T22:32:00.000-07:00

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...

2009-09-18T15:57:00.001-07:00

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

2009-09-16T14:24:00.000-07:00

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

2009-09-15T15:52:00.000-07:00

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

2009-09-04T12:32:00.000-07:00

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.

Playing With Fire

2009-08-19T16:57:00.000-07:00

From the UK we have a new case of the "Asperger's defense." In this case, the defendant is Steven Walker, who is guilty of (accidentally) starting a fire which caused a fair bit of property damage. A local newspaper, in reporting the events of Walker's trial, focuses on a possible Asperger's angle. According to this source, "Walker is thought to have Asperger’s Syndrome and was found to be lacking common sense." (What do they mean by "thought to have Asperger's Syndrome"? I have no idea. Anyone can be "thought to have" AS by someone or another. I can only hope that the court used more precise information in making its decision.)

So now we have the implication that Asperger's = setting fire to things by accident, because of a "lack of common sense." (What is "common sense"? Again, I have no idea. Whatever it is, I'm sure that it's not actually very common, given the state of the world today.)

I have to read more than halfway through the story to find out a more salient fact about this case--Walker had consumed vodka prior to the incident. The journalist's presentation of the issue makes it appear as though Walker's (unconfirmed) AS was more of a factor in the crime than alcohol use--which is, to put it mildly, rather questionable. Now, why would the paper do that? Could it be that sensationalistic headlines infantilizing people who (supposedly) have sexy, mysterious "disorders" are more interesting (or so they think) than another humdrum account of vandalism as the result of alcohol use?

Good riddance. I'd wager that drunken vandals are significantly more common than autistic ones, yet somehow the alleged autism becomes the salient point--not only in this report, but in the judge's sentencing.

Judge Andrew Woolman imposed a two year community order, involving two years supervision. He told the defendant he had committed a wicked offence.

He added: “If this was a case of the normal mindless vandalism coming before this court all too frequently, I would have no hesitation in locking you up for a couple of years. But it is obvious you have tremendous difficulties coping with life. I have no doubt that if I sent you to prison, you would be extremely vulnerable and at considerable risk yourself. I suspect that not even the victims, although very angry indeed, would want to see terrible things happen to you in prison”.

Judge Woolman seems to me to be rather confused. Disabled people don't want or need pity, and in any case, pity should hardly be the primary basis of a legal decision. Why is Walker's case different from the "normal" cases of "mindless [drunken] vandalism"? Because the defendent may have a diagnosis and the judge feels sorry for him? Oy. I do not know very much about the British criminal justice system, but I do know that in the US, prisons are highly unpleasant for most people, autistic or not. I think there are good arguments to be made for making prisons less hellish, because right now they're not doing much other than making better criminals. And locking people up for a "few years" because of drunken accidents is a complete waste of tax dollars, at least in my opinions. But to treat someone vastly differently on the basis of pity and possible disability is not equality; it's condescending crap which harms all disabled people. Shame on you, Judge Woolman and The North West Evening Mail, for making autism the primary issue at stake when it really, really isn't.

Resist Ableism in NY Times

2009-08-09T10:56:00.000-07:00

I urge all readers interested in fighting ableism to read this post, and to send your name and e-mail address to jfa@aapd.com. As the U.S. is currently amidst a vital political struggle for much-needed healthcare reform, it is imperative that the voices of disability rights activists are heard. Especially when bigoted, ableist voices like Peter Singer are being given prominent platforms, such as The New York Times Magazine, to air their bigotry. This is an unacceptable state of affairs, and the Times should be made aware of it. (It was also the Times which published Singer's obituary of Harriet McBryde Johnson, suggesting a disturbing pattern.)

Singer uses tortured, ableist mathematics to "prove" that nondisabled life is preferable to life with a disability (quadriplegia is the example which he uses). This "math" is nothing more than ableist assumptions wrapped up in fancy, philosophizing language. It does not express any kind of truth about disabled people's lives--but unfortunately, the Times represents Singer-math as truth. (It has always struck me that Singer is more concerned about using disabled people as part of his thought experiments than in accurately grasping the reality of our lives. Whether it's unfounded assumptions about wheelchair users, or making assumptions about the capabilities of people with Down's Syndrome, Singer is apparently too busy philosophizing to examine empirical research about the actual quality of disabled people's lives. He'll just assume our lives are worth less without properly examining the assumption, as a thorough researcher should do.)

Singer's essay also touches on the issue of "curing" disability:

This method of preserving our belief that everyone has an equal right to life is, however, a double-edged sword. If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it. That implication, no doubt, would have been vigorously rejected by someone like Christopher Reeve, who, after being paralyzed in an accident, campaigned for more research into ways of overcoming spinal-cord injuries. Disability advocates, it seems, are forced to choose between insisting that extending their lives is just as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their condition.

This is a ridiculous false choice which Singer is proposing, and a blatant admission that Singer just doesn't think disabled people's lives are particularly important. Meanwhile, he sloppily uses Christopher Reeve as a token cripple without acknowledging how utterly unrepresentative Reeve was. (Why not Johnson or some other disabled person?) Reeve was an ultra-privileged wheelchair user, thanks to the fame and money he accumulated as a nondisabled person. Make no mistake--this class privilege allowed Reeve to mitigate, to some extent, many the problems which most wheelchair users face. He had the luxury of devoting his life to campaigning for a cure; many others struggle to obtain housing which is at all wheelchair-accessible. But Singer trumpets Reeve's pro-cure views as the disability standpoint, when in fact these views may not be wholly representative of disabled people. Nor do able-bodied people like Singer really know, with any accuracy, where disability advocates would prefer money be spent--which is often on accommodations, rather than cures. Such is the case for the autistic self-advocacy community, as well as "Jerry's Orphans" who have protested the asinine ableism of Jerry Lewis. I'd wager that most disabled people--if offered the choice, however ludicrous, between "cure" research and equality, would choose equality.

People with disabilities can speak for ourselves, and we deserve to be heard. So let's let the The New York Times know that they oughtn't only discuss the quality of life of disabled people when a known bigot like Singer is the one defining the terms of the discussion.