Links & Commentary

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

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

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

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

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

Comments, unfortunately, are a mess.

Diagnostic Line-Drawing

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

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.