Strangers in an "Unstrange" Land

I just finished Roy Richard Grinker's book Unstrange Minds: Remapping the World of Autism, and I very much recommend it to just about anyone with an interest in autism.

It's written from a parent's point of view, and mostly (it seemed to me) for an audience of other parents, but there's a lot in it to interest people outside that core audience, too. There's a lot of historical stuff about the first descriptions of autism, and about how psychologists have tried to understand it over the past six decades or so; Grinker's father, grandfather and great-grandfather were all psychoanalysts (psychiatrists, too --- his grandfather founded the Archives of General Psychiatry), so he has a very strong grounding in the history of psychology and psychoanalysis.

He also addresses the question of whether there is or is not an autism epidemic, going into some detail about how diagnostic categories have changed, how the availability of special-education services varies by diagnosis, and how the ways of measuring the prevalence of autism have changed.

The first edition of the DSM to have "autism" as a category was the DSM-III, published in 1980. The criteria for "Infantile Autism" were fairly specific:

A. Onset before 30 months of age
B. Pervasive lack of responsiveness to other people (autism)
C. Gross deficits in language development
D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, and pronominal reversal.

(There was also a category for people meeting all of these criteria, but with the condition not appearing until after 30 months of age; there were also "residual state" diagnoses for people whose speech problems or unresponsiveness had lessened to the point that they no longer met the above criteria).

The DSM-III-R criteria were somewhat looser, getting rid of the age-of-onset criterion and collapsing the "residual states" into Autistic Disorder itself --- you could have an autism diagnosis even if you did not currently meet all the criteria, as long as you had met them before.

The loosest criteria of all were those of the DSM-IV, which I had already known, but what I didn't know was that their flexibility wasn't all by design:

[T]here was an error in the final manuscript. It is not well known, even among experts, but in 1993, when the authors of the child psychiatry section of the DSM were editing the proofs of the new DSM-IV, which would be published in 1994, they missed a critical mistake. For PDD-NOS, the largest group of autism spectrum disorders, they had intended to write as the criteria, "impairment of reciprocal social interaction and in verbal or nonverbal communication skills." A different text was accidentally published. It said, "impairment of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present." The authors had wanted someone to qualify as autistic only if they had impairment in more than one area, but the criteria, as published, required impairment in only one area for a diagnosis of PDD-NOS.

Another interesting aspect of his discussion of autism diagnoses hinges on the different priorities of clinicians and researchers, and his idea (well-buttressed with quotations from prominent psychiatrists) that autism diagnoses are often made not because "autism" accurately describes the child being evaluated, but because they think the special-education services targeted at autistic children will do the most good for that child. That would go a long way toward explaining the "diagnostic substitution" that's occurred over the years, with more children being classified as "autistic" at the same time as fewer children are being classified as having plain old intellectual disability. (Grinker also includes a parallel instance of a diagnostic category that no one would argue is actually becoming more common --- traumatic brain injury --- becoming more widely used over the same period of time, due to changes in the U.S. Department of Education's disability coding system).

The part of the book that was most interesting to me was the series of chapters on cultural attitudes toward autism in three other countries: India, South Korea and South Africa. For each country, Grinker profiles one or two families with autistic children, usually starting with the mother, and letting her tell the story of how she came to suspect that there was something different about her child, and how she overcame varying degrees of stigma, disbelief and lack of services to get her child therapy, special education and a place to live when she could no longer take care of him/her.

We meet Golden and Suzanna Khumalo, and their son, Big Boy, who moved from Soweto to Cape Town in South Africa to get their son to a psychiatrist, and away from Golden's parents and ex-wife, who blamed Big Boy's autism on, respectively, displeased ancestors and witchcraft. We meet a woman named Merry Barua, in Delhi, India, who founded a school for autistic children called Open Door, which she began for her own son, in the absence of any other school that met his needs. We also meet two families from South Korea: a woman named Seung-Mee, with an autistic daughter named Soo-Yong, who joined a Christian church because the church members were the only people she ever met who really seemed to accept her or her daughter, and another family with three children, one of whom is autistic and kept hidden from the world. Autism is a highly stigmatized condition in South Korea, and one that reflects poorly on an entire family, so often doctors will diagnose a child with an attachment disorder instead. Grinker does think it's getting better for autistic people there, though: a recent film about an autistic marathon runner is lessening the taboo somewhat, and giving people the idea that autistic people can do more, and have fuller lives, than they had previously thought.

There was one aspect of autism that I thought this book didn't go into very much, though: he doesn't include very many quotes from autistic people themselves. (I can only remember one, actually --- at the very end, talking about a college class on autism he taught where one of the students had Asperger's syndrome). This didn't bother me as much as it might have, since he wrote about his autistic daughter Isabel in such an empathic way; rather than simply describe her behavior as if she were some kind of space alien, he gives context for everything she does, and tries to convey something of her feelings. He lets us see her grow up, learn things, acquire skills, and pursue her special interests. He writes from a caregiver's point of view, and everyone he interviews is also a caregiver, but he writes about his daughter with such love, respect and understanding that I never got the feeling that he thought of her as a burden, as an extension of himself or as anything but her own person.

1 in 38?

That's the proportion of school-aged kids found to meet diagnostic criteria for an ASD by this team of mostly Korean researchers --- Drs. Young-Shin Kim, Bennett L. Leventhal, Yun-Joo Koh, Eric Fombonne (who has done a lot of research on the prevalence of autism), Eugene Laska, Keun-Ah Cheon, Soo-Jeong Kim, Young-Key Kim, Dong-Ho Song, and Roy Richard Grinker (the Unstrange Minds guy), along with Eun-Chung Lim and HyunKyung Lee --- when they screened elementary-school children in one district of a fairly large city (Goyang City, pop. 1,073,069; Ilsan district, pop. 488,590) near Seoul, South Korea.

Part of their reasons for doing this study (full text here) was their thought that previous estimates of the prevalence of autism rely too much on documentation from official sources --- national disability offices, special-education registries, autism-specific service providers, etc. --- that wouldn't include children who have not yet been evaluated for ASDs.

To try and get more of a cross-section of Korean children, the researchers recruited from both mainstream elementary schools (41, of which 30 agreed to participate), special-education schools (3), and the city's Disability Registry (all children between 7 and 12 listed as having either ASD or intellectual disability). Children from participating institutions were initially screened for autism using the Autism Spectrum Screening Questionnaire (ASSQ), which parents and/or teachers filled out about each child.

Not surprisingly, the general-population group, recruited from the elementary schools, was much larger than the developmentally-disabled group recruited through the Disability Registry or from special-education schools: in all 30 participating elementary schools, there were 36,592 children between the ages of 7 and 12. Of these, the parents of 23,234 completed the ASSQ and sent it in to the researchers; of the 294 students attending special schools and/or listed in the Disability Registry, 103 had forms submitted for them.

Anyway, following this initial screening, the students who scored high enough on the ASSQ (with a teacher-rated score of at least 10, or a parent-rated score in the top five percentiles*) were offered further diagnostic evaluation. Among the elementary-school students, 1,742 met those screening criteria, and 234 completed the evaluation. All of the special-education students were considered to meet screening criteria, and 52 of them completed the evaluation. Each child was evaluated by two teams, and each team included both Korean- and American-trained practitioners. The evaluators used Korean versions of the Autism Diagnostic Interview (ADI-R), Autism Diagnostic Observation Schedule (ADOS), and two cognitive tests, the WISC-III and a revised version of the Leiter International Performance Scale.

Of the 286 children who were evaluated, 201 met criteria for an ASD**. Just over half of these (101) met criteria for Autistic Disorder; just under half of those (48) had come from the special-education group. All but one of the students in that group who were diagnosed with an ASD were diagnosed with Autistic Disorder, while most of the students in the general-population group were diagnosed with some other ASD, either Asperger's syndrome or PDD-NOS**.

There is one thing I found particularly interesting in their results: the ratio of boys to girls among their ASD "positives" is significantly lower than the 4:1 most commonly cited in the autism literature. These researchers found a ratio of 5.1:1 among the special-education students (who were mostly boys to begin with --- of the 103 special-education students who were screened, 84 were male, so even if *all* of the girls in that group had autism, the ratio would still be skewed in the boys' favor unless relatively few of the boys had it) and a ratio of 2.5:1 among the mainstream elementary-school students.

That number adds some support to the hypothesis that autism remains underdiagnosed among girls --- the lower ratio was only seen in the students who were not flagged as disabled or special-ed, not receiving any services. Among the students known to be developmentally disabled, or already diagnosed with autism (i.e., those registered as ASD in the Disability Registry), the ratio was closer to the current conventional-wisdom ratio of 4:1.

(It also seems like the forms of autism that are most likely to go undiagnosed in girls are the "milder" forms, like Asperger's and PDD-NOS. Very few girls in the general-population sample met criteria for Autistic Disorder; of the 27 children meeting those criteria, only five were female.)

Anyway, back to the number making up the title of this post.

How they got that number is complicated. They divided the number of autistic students they extrapolated there to be based on the number they found (more about this later) by the total number of seven-to-twelve-year-old children living in the Ilsan district of Goyang City, which is 55,266.

So much for the easy part.

There were several steps involved in correcting for the large proportion of nonresponders; first, and easiest, they guesstimated the likely full scores of the people who turned in partial ASSQs. (The simplest method they had for doing this was simply to take the average single-item score on a form in which only some of the items are answered and multiply it by the number of items on the full questionnaire, which is 27). Just doing that gave them 264 more subjects meeting initial screening criteria for an ASD. They also added in all the children listed in the Disability Registry as having ASD who did not participate in this study; this would add 101 subjects to the confirmed-ASD pool. (They left out all the non-participating children listed as having intellectual disability).

They also did some statistical manipulations that I don't understand (I had minimal coursework in statistics, and not even good old Google can tell me what a "weigh-back procedure"*** is) to correct for their only having given some of the people meeting their minimum screening criteria the opportunity for furthere evaluation. (See the Methods section and this supplemental section for their discussion of these techniques).

At the end of all of this, they ended up with an adjusted prevalence figure of 2.64%, or the 1 in 38 referred to in the post title. There are several ways in which this might be an overestimate: chief among them, the researchers assumed that the proportion of children meeting screening criteria who also meet diagnostic criteria for an ASD would be the same for the nonresponders as it was for the responders --- i.e., about 70%. Their basis for this assumption is a logistical regression model they created to try and predict parental consent to, and participation in, diagnostic evaluations. They found that since none of the co-variates they'd chosen for this missing "latent variable" --- child's age, sex and ASSQ score --- predicted whether a given child would end up with an ASD diagnosis or not, that parental willingness to have more tests done did not vary with the likelihood that their child is autistic. But all of those variables are somewhat crude proxies --- even the ASSQ score, when you consider that all of the "screen-positive" children had scores clustered within the same narrow window, and thus variation between them would be minuscule. So I think it's reasonable to think that maybe the model was wrong, and the parents who chose to have their children evaluated might have a higher proportion of autistic children than the parents who opted out.

However, there are just as many reasons to suspect that their numbers are an underestimate --- after all, they did write off all the nonparticipants labeled intellectually disabled, even though their own results show a substantial proportion of intellectually-disabled responders having autism. The authors also suspect underreporting of possible autism by both parents and teachers, because autism is stigmatized in South Korea (thus making parents less likely to want to admit that their child has it) and because the South Korean school day is so rigorous and structured (making teachers less likely to notice the social dysfunction that the ASSQ tests for, because there is so little socializing during a typical school day in Korea).

But the need to extrapolate so much data to make up for low response rates is a serious flaw in this study, though, as Prometheus points out, even when you restrict your gaze to the data that they actually have, you still see that the majority of confirmed ASD cases were in the general-population group, among children who had never seen a mental-health professional before.

Other bloggers posting about this study: Steven Novella at Science-Based Medicine; Sullivan at Left Brain/Right Brain and the Autism Science Foundation blog; Rose at Hard Won Wisdom; Michelle Diament at Disability Scoop; Paul Whiteley at Questioning Answers; Polly Palumbo at Momma Data; Aspie Editorial; Raphael Fraser at Music, Medicine & the Mind; Prometheus at A Photon in the Darkness; and MJ at Autism Jabberwocky (who has a detailed explanation of the ASSQ and its inherent biases)

*Only some of these children were referred for further evaluation: all the children scoring in the top two percentiles, half the children (chosen randomly, not by score) in the percentile third from the top, and one-third of the children in the percentiles fourth and fifth from the top.

**There's another interesting asymmetry within the general-population-derived ASD cases: a much greater proportion of those whose final diagnosis was Autistic Disorder had histories of psychiatric or psychological treatment. A majority (26 of 48) of students attending mainstream elementary schools who both met criteria for an ASD and had seen a psychiatrist or psychologist in the past ended up being diagnosed with Autistic Disorder, while the ASD students from mainstream elementary schools who had never seen a mental-health professional were mostly diagnosed with the other ASDs (27 of 104 with Autistic Disorder; 77 of 104 with either Asperger's or PDD-NOS).

***Perhaps it is how Mr. Peabody travels back in time?

Kim, Y., Leventhal, B., Koh, Y., Fombonne, E., Laska, E., Lim, E., Cheon, K., Kim, S., Kim, Y., Lee, H., Song, D., & Grinker, R. (2011). Prevalence of Autism Spectrum Disorders in a Total Population Sample American Journal of Psychiatry DOI: 10.1176/appi.ajp.2011.10101532

More Disagreeing by Diagnosing: the Aspie-in-Chief

EXECUTIVE SUMMARY: Partial transcript of a podcast by two progressive political bloggers that criticizes President Obama's leadership style, which the podcast hosts believe is weak. The podcast, titled "Hey Obama, Get Your Head Out of Your Asperger's!" spends a lot of time drawing a picture of Barack Obama as a "high-functioning Asperger's" autistic, who is fixated on governing according to his own ideas of what the Presidency is supposed to be, even at the expense of governing well, or of doing any of the things the people who voted for him want him to do. Besides producing this transcript, I also critique the Obama-as-Aspie metaphor, and quote another autistic blogger's (Leah Jane) criticism that I particularly endorse.
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Leah Jane at The Quixotic Autistic linked to this Professional Left podcast from a couple of weeks ago, titled "Hey Obama, Get Your Head Out of Your Asperger's!"

The podcast couches some actually very good criticism of Barack Obama's approach to being President in some really offensive stereotyping of autistic people (similar to the instances of Disagreeing by Diagnosing I've chronicled earlier on this blog). Leah Jane transcribed and paraphrased a little bit of the relevant part of the podcast (which is very long --- almost the whole first half of the forty-minute recording), but invited other people to transcribe more of it, so I figured I'd do that.

The participants in this exchange are progressive bloggers Driftglass and Blue Gal:

Driftglass: ... I'm very disappointed in my president right now.

Blue Gal: Yep. I actually woke up this morning and had a revelation about Barack Obama that I want to share with you.

Driftglass: Ooh! Pray tell, pray tell.

Blue Gal: I haven't even put this in the podcast notes, because I want it to be fresh.

Driftglass: Well, hold on, let me "man up" so I can handle it!

Blue Gal: (Laughs)

Driftglass: Let me put on my "man pants," as the new parlance for bracing myself ---I'm girding my loins.

Blue Gal: Girding your loins. There ya go.

Driftglass: Ready, gird! Okay, go.

Blue Gal: You and I both know --- and I actually did Photoshops this week of Obama as Spock --- and you and I both know, and lots of people have said that basically, Obama is sort of on that high-functioning Asperger's end of the spectrum, of not being emotional, of being very rational about things rather than getting mad, and that's very frustrating to a lot of us.

Driftglass: Yes.

Blue Gal: But along with that --- and also, full disclosure: Driftglass and I are very familiar with what it feels like to be on the Asperger's end of the spectrum; I think I can speak for both of us in that regard, may I?

Driftglass: That's a fair statement.

Blue Gal: We've talked about that before.

Driftglass: Yes, that's a reasonable ---

Blue Gal: Obsessive interests, you know, being able to ignore everything else to the point of a fault, and so forth. But one of the things that people like us, at that end of the spectrum, often do, is focus on one little detail --- again, to the fault of forgetting the big picture.

Driftglass: Yes.

Blue Gal: --- and I really think that the Constitutional scholar Barack Obama has this little seed in his mind that the Presidency is supposed to be weak, Constitutionally speaking, in relation to the Congress, in terms of starting legislation, and so forth. He's decided that he's going to return, he's going to change the way Washington works, and what he means by that is he's going to go back to a time when the Presidency and the Congress and the courts were part of this balancing act --- you know, the three branches ---

Driftglass: (cuts in) Pre-Imperial.

Blue Gal: Pre-Imperial presidency. So I'm thinking this morning in my kitchen about, "Well, when was it that we sort of got this imperial presidency?" and I realized, "Oh, my God, FDR!"

Driftglass: Yeah?

Blue Gal: And, so, doing this is antithetical to the New Deal! You know? It really is!
Driftglass: It is. It is.

Blue Gal: And that's why we're all having such a collective freakout, like "Revenge of the Nerds," when the nerd gets elected to the presidency of the student council, and, instead of sitting down and taking over and representing the rest of us nerds, and doing what we want him to do, he sits down and takes out the bylaws, and says (speaks in nasal voice) "Well, ya know, we really have to go by the bylaws and the bylaws say that everyone gets a vote and we all have to work together on a consensus."

Driftglass: Uh-huh.

Blue Gal: And we sit there and we're like, "But wait! We elected you President because we don't want the Alpha Betas to have a voice in this! They're jock assholes! They're not gonna come up with anything that's gonna even resemble a reasonable answer to any of the problems we have." (nasal voice) "No, but the bylaws say we have to do it this way." (resumes her normal voice) And the collective freakout from the progressive base, is, "Oh my God! He's going by the bylaws! Stop it! Stop it! Stop him now! We want you to be an imperial President. We want you to be strong."

Driftglass: He's an originalist. He's a Constitutional originalist; the first branch of government is the Congress.

Blue Gal: Yeah! And they're the ones that originate legislation.

Driftglass: Yeah, absolutely true.

Blue Gal: And, as someone who came fresh out of the Senate --- you know, was really in the Senate for a very short time --- and being the Constitutional scholar that he is --- but the other thing about this "Aspie" thing, this Asperger's thing, is, two things: One is, I think Barack Obama really has faith in America, and thinks
that America can survive anything. We survived Reagan. But I think he really has fundamental faith in America to survive anything, and so it's perfectly okay for him to conduct this experiment, and I really think he's conducting an experiment now, in his head. Let's go ahead and really do this Constitutional thing of letting the Congress have more power.

Driftglass: Yeah.

Blue Gal: And I think he realizes that, the people he's dealing with, they're Republicans, you know?

Driftglass: Yes. Well, there's the fly in the ointment, isn't it?

Blue Gal: Yeah! The fly in the ointment is, they want to destroy him. And he doesn't care because he's gonna conduct this little experiment in Constitutional originalism --- it's almost ironic in terms of the Tea Party always talking about defending the original Constitution, which to them means "we only have white men for President" ---

Driftglass: The Second Amendment, the Tenth Amendment, and nothing else.

Blue Gal: --- but the real Constitutional originalist is Barack Obama.

Driftglass: That's a very interesting revelation.

Blue Gal: And it's intellectualizing it like that that distracts me from wanting to (bleep) Congressional offices, damn it!

Driftglass: Okay, you'll have to, uh ---

Blue Gal: I think I'll have to edit that out.

(Both laugh).

Blue Gal: It's a joke! It's a joke. I'm kidding, I'm kidding.

Driftglass: Send them a very firm letter.

Blue Gal: I'm going to send a very firm letter, too!

Driftglass: Well, I can understand that point of view. I can respect that point of view. You raise a very interesting point, that he is conducting his presidency as a mediator among the branches of government, and as a modest, confirm-or-deny kind of person, but [one] who doesn't originate. And that is what the Constitution generally says a President should be.

Blue Gal: We're so not used to this, because, when I teach middle-school U.S. history, it's all about who was President. You start there, with U.S. history.

Driftglass: Of course.

Blue Gal: "Okay, when FDR was President, this, this, this and this happened." You don't start with, "The great Congresspeople of 1945, how brave they were!" You know? You don't go there! That's not how we think of history.

Driftglass: So he's essentially gone to the House basement and pulled out this 200-year-old machine, and said, "I'm going to oil it up and get it running again and make it run the way it was originally intended to run." That's a very interesting theory, and I think that we could spend probably the rest of the podcast talking about it.

Blue Gal: I think so. Yeah.

Driftglass: But if I'm that guy, then Step One is, I stop torturing people.

Blue Gal: Yeah. Yeah.

Driftglass: Step Two, I close down secret prisons. If you really ---

Blue Gal: And that's it. I think that's where he fails his own experiment.

Driftglass: He does.

Blue Gal: Because, there are areas --- particularly during the Bush administration --- where presidential power just exploded.

Driftglass: And he wants to hang onto that.

Blue Gal: He wants to hang onto that! You can't have it both ways.

I do think there might be something to Blue Gal's notion that Barack Obama, the Constitutional scholar, might be deliberately not being as strong a leader as he could be because he believes the Presidency *should* be weak. Of course, there is a conflict there with his keeping in force all the totalitarian measures his predecessor adopted after 9/11, using a vague Terrorist Threat to justify all manner of surveillance-state excesses --- and Driftglass and Blue Gal catch that inconsistency, and acknowledge it. They make some other criticisms of Obama's leadership style that I think carry a lot of weight, like his persistence in believing that the extremists who've largely taken over control of the Republican Party (in what I think of as a two-stage process that began with the anti-Clinton Republican Revolution of 1994, which gave us Newt Gingrich, and has culminated with the current anti-Obama backlash) will move even one nanometer to the left in order to compromise with him --- even if he moves a mile to the right first, as a gesture of good faith. Driftglass also makes a good point that Obama is not only President, he is also leader of the Democratic Party, and he is abandoning this second responsibility. I also appreciated their discussion of the long historical roots* of the "imperial Presidency" that they suspect Obama of wanting (if not quite wholeheartedly) to abdicate.

But this "oh, the President is an Aspie, that's why he's so 1) emotionless, 2) naive and 3) stubbornly committed to principle at the expense of realpolitik" thing, that's the part I didn't find particularly helpful or illuminating.

I thought Leah Jane put her finger on the biggest thing that's wrong with this use of autism-as-metaphor:

[W]hen the American people were at an all time euphoria about Obama, he was compared to Spock, and Superman, and other idols of nerd culture, but the "A" word never came up. Now, progressives are finding a few walloping things wrong with his decisionmaking and snubbing of progressives, and now it's so convenient to label him with autism or some other "disorder" or invisible disability. Disability need not apply to people when they're doing what you think is right, but the moment you find fault with them, disabilities begin to be thrown about, and always the negative stereotypical traits are thrown in too. Never would it be suggested (at least while he is alive, see Einstein and Newton) that Obama has Asperger Syndrome for an exceptional trait which makes him a fine leader. Always focus on what makes them different, not good. Same for Narcissistic Personality, or Psychopathic Personality, Obsessive Compulsive Disorder, or now, Asperger Syndrome. Yay. Or just happily labeling anyone who disagrees with you as part of the Loonie Left, or a Wingnut, or a Right Wing Nutjob, having "Nazi Tourettes," having some type of ADD or ADHD, or a Crazy [insert noun], or Republitard.

How delightful to know that the mentally and intellectually disabled are so disposable.

I remember this, too: during the campaign and shortly after he became President, people would use words like "cerebral," "rational" (or "hyper-rational," if you're fond of superlatives), "intellectual," "professorial," or talk about his desire to transcend partisanship, or dirty politics, or whatever; the image was of a guy who practically embodied Reason and Idealism and Moderation in All Things. And we did not use a psychiatric diagnosis to convey this image; we used mere adjectives. Now that some commentators see these same traits as flaws --- as impediments to his being an effective President --- they describe them in psychiatric terms. What were character traits or habits are now symptoms.

Using metaphors like that --- comparing some trait, or philosophical stance, or policy position, in a politician to a DSM diagnosis --- does two things. First, it marginalizes and delegitimizes the person you're talking about, since whatever they say can (and usually is) just be used as further evidence of their incapacity; and second, it feeds the stigma against people with that particular diagnosis. There's already a stereotype that autistic people are never leaders, never politicians, because of our total lack of social skills; if "autistic" or "Aspie" become common insults for a leader who is seen to be ineffective, the stereotype becomes stronger (and also, more specific to political leadership). Young autistic people trying to find something they're good at and want to do with their lives might assume they can't go into politics (even if they might want to, or have an aptitude for it**), or people in a position to hire, say, campaign workers might choose not to hire anyone who says they're autistic, or who looks autistic, because they've gotten the idea that autistic people don't belong in politics.

*I wonder if, based on some things I've read at Arthur Silber's blog (start with this nine-part series on "Dominion Over the World" and follow links to his other writings on the history of American imperialism, if you've got lots of time and an intense interest in this matter), if this overpowered executive branch might not be even older than they seem to think it is --- if maybe it didn't start with Woodrow Wilson (or earlier --- you wouldn't call Teddy Roosevelt a passive, retiring, conciliatory sort of leader, would you?) rather than Franklin D. Roosevelt. Wilson was also a very active, aggressive President who embroiled the nation in bloody, imperialistic wars that it had no need to fight (in Mexico, Haiti, Cuba, Nicaragua, Panama, the Dominican Republic, and Russia, according to Wikipedia; he also ultimately made the choice to involve the U.S. in World War I). But Wilson in particular seems to have done a lot of the thing that I had previously thought started with the Gulf of Tonkin resolution that kicked off U.S. involvement in the Vietnam War: using executive power to declare war without ever formally declaring war, which the Constitution allows only Congress to do.

**Which some of us do!

Through a (Brain) Scanner, Darkly

EXECUTIVE SUMMARY: In the August 11 issue of the Journal of Neuroscience, Christine Ecker and her colleagues at the Institute of Psychiatry at King's College in London describe a new tool they've developed for finding differences between autistic and non-autistic brains that go beyond "x brain structure is bigger/smaller in autistic people"; their method takes into account overall patterns of gray matter structure and organization. Their tool not only identifies these subtle, pervasive differences, it also "learns" them, using them to classify individual (computer models of) brains as autistic or not-autistic. The tool works quite well for that kind of classification, doing significantly better than chance on almost all its individual components, and reaching 65 to 85 percent accuracy as a whole. It can also distinguish between autistic brains and some other kind of non-neurotypical brain, in this case ADHD.
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(Still image from the TV show "Dollhouse")

Apart from this brief mention on Amanda's blog, I hadn't read anything at the time about the new multidimensional brain scan described last month in the Journal of Neuroscience. I was intrigued, because one thing that's been awfully elusive to autism researchers is a consistent, reproducible biological marker that's specific to autism.

There've been some hints of neuroanatomical differences between autistic and non-autistic people in previous studies, but those differences --- in, say, the size and activity of the amygdala, the size and shape of the hippocampus, the size of the cerebellar vermis, the distribution of gray matter and white matter, the density of certain cell types within the cerebellum, the thickness of the cerebral cortex, or even in the overall size of the brain --- don't always show up when researchers look for them, nor do they always show up in every member of the (very small, carefully selected and usually quite homogeneous) group of autistic people being studied.

The authors of the recent study --- Christine Ecker, Andre Marquand, Janaina Mourão-Miranda, Patrick Johnston, Eileen M. Daly, Michael J. Brammer, Stefanos Maltezos, Clodagh M. Murphy, Dene Robertson, Steven C. Williams and Declan G. M. Murphy --- suspect that there might be a broader, more pervasive pattern of altered brain structure that underlies all the different, highly variable, changes to individual structures within the brain that are sometimes seen in autism:

[R]eports of region-specific differences in ASD are highly variable [for review, see Toal et al. (2005) and Amaral et al. (2008)]. Such variable findings may simply be explained by confounds such as clinical heterogeneity between studies, or analytical techniques. Alternatively, variability in findings may indicate that differences in brain anatomy in ASD are relatively subtle and spatially distributed, and are difficult to detect using mass-univariate (i.e., voxelwise) approaches. Last, given the multiple etiology of ASD, it is likely that its neuroanatomy is not confined to a single morphological parameter but affects multiple cortical features.

To try to find out what kinds of subtle, structural differences might characterize the brains of autistic adults, the researchers scanned the brains of twenty autistic men*, twenty men without any psychiatric, neurological or developmental disorders, and nineteen men without autism but with ADHD (to provide a non-autism, but also non-neurotypical, control group to try and isolate neuroanatomical variations particular to the autism group), used the MRI data to create three-dimensional computer maps of each subject's brain, and then fed the values of five different measurements taken at each vertex of the computer model (which is made of tiny triangular facets meant to approximate the brain's curved surfaces) into a statistical-analysis algorithm called a Support Vector Machine, which Neuroskeptic describes much better than I could in this post.

The five things they measured at each vertex of their virtual mock-brains are as follows: average convexity/concavity of the cortical surface (i.e., the distance between the cortical surface at a given vertex and where the cortical surface would be if the brain were smooth); cortical thickness; mean (radial) curvature (i.e., the radius of the circle that could be drawn underneath the curve of the cortical surface); metric distortion or Jacobian, which is the ratio of the areas of the triangular facets making up the cortical surface and the gray/white matter interface; and the pial area, which is the average area of the triangular facets touching each vertex.

Since some of these things are very hard to visualize, here's a diagram:

Figure 1, in Ecker et al. (2010)

Overall, this five-parameter model works pretty well at predicting who is autistic** and who isn't, though I was surprised to see how much its accuracy differed from one side of the brain to the other. On all measures, there's a huge gap --- a gap of 20 percentage points or more, in all but one instance --- between the two brain hemispheres in terms of a given measure's accuracy (i.e., its ability to sort all subjects into the correct category), sensitivity (ability to correctly identify autistic subjects --- i.e., having a high number of true positives and a low number of false negatives) and specificity (ability to correctly identify non-autistic subjects --- i.e., having a high number of true negatives and a low number of false positives).

For whatever reason, the left hemisphere much more than the right showed consistent neuroanatomical differences between autistic and non-autistic subjects.

Here's a classification plot showing the two categories as determined by applying the five-variable classifier to the left hemisphere:
Here, all but two autistic subjects are placed into the positive (i.e., autistic) category, and all but four control subjects are correctly placed into the negative category.

Contrast that with the right-brain results ---

--- where you see a lot more crossover between categories, plus several subjects straddling the border line. It is also only in the left hemisphere that any correlation is observed between how far to the right of the dividing line a person is and their ADI scores in the social and communication domains.

Some parameters also performed better than others: cortical thickness had the highest accuracy levels of any parameter (90% in the left hemisphere!), followed by metric distortion.

Finally, in the left hemisphere the model also succeeded in distinguishing ADHD subjects from autistic ones. (In the right hemisphere, it placed about equal numbers of ADHD subjects in each category). That's important because it shows that the model is actually picking up on characteristics of autistic brains, instead of just registering all deviance from "normal."

So, what *ARE* these characteristics of autistic brains? Well, they vary by region --- not only in terms of which parameter is relevant, but also in terms of how autistic people differ from neurotypicals on a given parameter.

For instance, if you look at this map of how the autistic subjects' brains differed from the controls in terms of cortical thickness, you can see that some parts of the brain (mostly on the temporal lobe) tend to have a thicker layer of gray matter in autistic people, while in other areas (mostly on the frontal and parietal lobes), the cortex tends to be thinner in autistic people.

Figure 4 (A), in Ecker et al. (2010); red areas represent more gray matter in relation to average non-autistic brain, blue areas represent less gray matter.

Some of the areas that showed up as having an "excess" of gray matter surprised me, as differential activity in those areas (fusiform gyrus, superior temporal sulcus) had previously been theorized to underlie autistic "deficits" in making sense of faces.

Besides these differences in amount of gray matter, there were also some strong differences in gray matter geometry: first, the autistic subjects showed greater sulcal depth in two regions --- the intraparietal sulcus and the superior frontal cortex --- and second, the inferior parietal lobes and certain regions in the right frontal lobe --- the right supramarginal gyrus, postcentral gyrus, and orbitofrontal cortex --- along with the precuneus, showed different patterns of cortical folding.

For example, here's the right intraparietal sulcus:

From Figure 5 (B), in Ecker et al. (2010)

The blue line represents the cortical surface for the average control subject; the red line represents the average autistic subject's cortex. You can see that the sulcus goes down deeper in the autistic subjects, and also that the gyri on either side are a bit steeper.

I would like to point out, again, that it's not necessarily any single variation at any one region of the brain that this statistical analysis has tied to autism, though --- it's a pattern of gray-matter distribution. It's also a pattern that's so far only been observed in a tiny, rather homogeneous sample of autistic men --- much larger, broader-based studies of this classifier need to be done to see if the same patterns hold up for all of the people currently lumped together under the category "autistic," or whether separate neuroanatomical phenotypes will define autistic subtypes.

I would also like to see future studies done using different diagnostic tools to define the autistic group --- if the goal of this research is to establish a biomarker for autism diagnosis so that we can finally be done with frustratingly ambiguous diagnosing-from-behavior, it will hardly do to have the biomarker be dependent on one of the older behavioral diagnostic tools for its template!

*According to this table showing demographic data on the autistic and control (but not the ADHD) subjects, the autistic subjects were mostly young, and some middle-aged, men (the average age (33) was much closer to the age of the youngest person (20) than it was to that of the oldest person (69)) and had a very wide range of IQ scores as measured by the Weschler Abbreviated Scale of Intelligence. The standard deviation, for full-scale IQ and for verbal and performance IQ, was around 20 points for the autistic group, and scores ranged from 76 (just one point over the cutoff point the authors chose to designate intellectual disability, which is a full-scale IQ of 75) to 141, with verbal IQs ranging from 78 to 133 and performance IQs from 77 to 138. These subjects, I'd like to point out in the spirit of adding to Michelle Dawson's recent post on functioning levels, were all defined as having Asperger's or high-functioning autism.

**Autistic subjects were determined to be such using either the ADI-R (for fifteen subjects), the ADOS (for five) or both (two).

Ecker C, Marquand A, Mourão-Miranda J, Johnston P, Daly EM, Brammer MJ, Maltezos S, Murphy CM, Robertson D, Williams SC, & Murphy DG (2010). Describing the brain in autism in five dimensions--magnetic resonance imaging-assisted diagnosis of autism spectrum disorder using a multiparameter classification approach. The Journal of neuroscience : the official journal of the Society for Neuroscience, 30 (32), 10612-23 PMID: 20702694

More Proposed DSM Revisions

Besides the unification of all the autism-spectrum conditions under a single, simplified definition (which I generally consider a Good Thing, despite the reservations I mentioned in my earlier post; this post of Amanda Forest Vivian's captures what I think is good about it quite well) and the elimination of Rett's Disorder from the DSM entirely, the DSM-V revisions include lots of other interesting ideas.

These include:

- Adding Binge Eating Disorder to the Eating Disorders category

- Eliminating amenorrhea (loss of one's mentrual period) from the criteria for Anorexia Nervosa, which would finally allow men who meet all of the remaining criteria to be diagnosed with full-blown anorexia rather than with the vague, often-minimizing label Eating Disorder Not Otherwise Specified

- Adding a childhood mood disorder called Temper Dysregulation with Dysphoria, which would be characterized by irritability and frequent temper tantrums; this disorder is meant as an alternative diagnosis for many of the children who are (or would be) now diagnosed with bipolar disorder

- Consolidating the personality disorders into five broad, yet-to-be-determined categories

- Adding "Hypersexual Disorder" and Paraphilic Coercive Disorder (in which the person is turned on by the idea of raping another person) to the Sexual and Gender Identity Disorders category

- Expansion of the DSM-IV's Substance-Related Disorders category (which included substance dependence and abuse) to a broader Addiction and Related Disorders category, which will include non-chemical, "behavioral" addictions like gambling; Internet addiction was considered for inclusion in this category, too, but ultimately discarded

Some of these proposed changes --- the two eating-disorder changes I mentioned, as well as the decision to remove some problematic wording from the criteria for anorexia, for instance --- are unadulterated Good Things, and were very much needed. (I'd actually argue, along with Rachel and her commenters, that the reforms to the anorexia criteria didn't go far enough; that BMI should not be the gauge of severity of anorexia because it misses those people who might be restricting their eating and obsessing about food, weight and body image just as severely as someone with diagnosable Severe Anorexia, but who, due to individual metabolic variation, never become underweight.) Others, like the addition of Temper Dysregulation with Dysphoria as a new childhood disorder, the concept of "risk syndromes" for psychosis and dementia, are a mixed bag. They might be helpful, or they might result in more people being marginalized, losing autonomy and/or being pressured to take powerful antipsychotic medications for illnesses that, in the case of the risk syndromes, aren't even present and may never be.

Also in the mixed-bag category is the DSM-V's formulation of Gender Identity Disorder (renamed Gender Incongruence, in an attempt to be less stigmatizing), which it splits into two main categories, one for children and one for adolescents and adults. Good things about the new criteria include the aforementioned move toward value-neutral language, its acknowledgement that sex and gender, even for transgendered people, aren't always binary (there's a long history of doctors "gatekeeping" sexual reassignment surgery, hormone therapy and other medical procedures associated with transition, restricting these things to those trans people who conformed most rigidly to the conventional role of their chosen gender) and its stress on whatever the individual trans person wants as the desired outcome. What's not as good is the retention of the notion of autogynephilia --- sexual fetish as motivation for transition --- in the category of Transvestic Fetishism, and the presence of stricter, gender-binary-enforcing language in the criteria for pediatric Gender Incongruence.

Finally, the creation of Hypersexuality as a new sexual disorder strikes me as colossally wrongheaded. Like sexual addiction --- which is not recognized in the DSM-IV, but which has gained popular acceptance in the addiction-recovery community --- this category would be inherently biased against people with unconventional sexualities: kinky people, swingers, polyamorists, even, depending on how conservative a community the person being evaluated comes from, gay and bisexual people. I also disapprove of the existence of this category for the same reason I disapprove of Hypoactive Sexual Desire Disorder: merely wanting/having sex to a greater or lesser degree than most people do isn't pathology, it's variation.

DSM-V Draft Posted Online

The American Psychiatric Association has posted its proposed revisions to the Diagnostic and Statistical Manual of Mental Disorders on its website, where specific disorders are grouped by category.

Here are the (current, subject to further revision) proposed criteria for Autism Spectrum Disorder in the DSM-V:

Autism Spectrum Disorder

Must meet criteria 1, 2 and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a. Marked deficits in nonverbal and verbal communication used for social interaction;
b. Lack of social reciprocity;
c. Failure to develop and maintain peer relationships appropriate to developmental level.

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors
b. Excessive adherence to routined and ritualized patterns of behavior
c. Restricted, fixated interests

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities).

This category includes everyone who, under current DSM-IV guidelines, would be diagnosed with Autistic Disorder, Asperger's Disorder, Pervasive Developmental Disorder Not Otherwise Specified, and Childhood Disintegrative Disorder. Rett's Disorder is also included in the DSM-IV section on pervasive developmental disorders, but is slated for removal from the DSM-V:

Rett's Disorder patients often have autistic symptoms for only a brief period during early childhood, so inclusion in the autism spectrum is not appropriate for most individuals.

Like other disorders in the DSM, Autism Spectrum Disorder (ASD) is defined by specific sets of behaviors and not by etiology (at present) so inclusion of a specific etiologic entity, such as Rett's Disorder, is inappropriate. To ensure that etiology is indicated, where known, clinicians will be encouraged to utilize the specifier: "Associated with Known Medical Disorder or Genetic Condition." In this way, it will be possible to indicate that a child with ASD has Fragile X syndrome, Tuberous Sclerosis, 22q deletion, etc.

This strikes me as reasonable; autistic-like behaviors that are part of a wider, underlying syndrome should be recognized as part of that syndrome, rather than considered or treated in isolation. Michelle Dawson, noting that "the vast majority of named neurodevelopmental disabilities do not appear in the DSM, past, present, or future", suggests that autism doesn't belong there, either.

Back to the revised criteria for Autism Spectrum Disorder: I noticed that there are now two, rather than three, symptom domains --- communication and social interaction have been merged into one category, leaving a "social communication and interactions" domain and a "restricted interests/repetitive behaviors" domain. The criteria seem to be vaguer, more flexible versions of the earlier autism criteria, which, as Shiva has written about recently, dwell excessively on social and communication impairments while ignoring other areas of difference that are just as important, if not more so, in the lives of individual autistics:

IMO, the existing "triad of impairments" [which the UK's National Autistic Society defines, somewhat differently from the APA's DSM-IV, as "difficulty with social communication," "difficulty with social interaction," and "difficulty with social imagination"], even with the additional "related characteristics" [of, among other things, "sensory sensitivity," "special interests," and "love of routines"] ... fails at defining autism both by inaccuracy in what it does contain and by failing to include what many autistic people consistently report as among the most significant components of what distinguishes us from neurotypical people.

Michelle Dawson criticizes this reductiveness, too, although her criticism deals more with the DSM-V workgroup failing to incorporate any understanding of autism as a separate cognitive phenotype, rather than one fundamentally equivalent to the standard, neurotypical cognitive phenotype, but missing some very important social and communicative bits.

I don't think, nor does much of the research on autistic cognition and perception suggest, that anything like that is the case.

Verbal Ability and Face Processing in Autism

One of the articles cited in my monster post from a couple days ago --- "Young children with Autism Spectrum Disorder look differently at positive versus negative emotional faces" (full text here) by Tessa C. J. de Wit, Terje Falck-Ytter, and Claes von Hofsten --- mentioned something I found really interesting, and certainly relevant to the continuing debate over what autism is, how to define it, and whether a coherent concept of "autism severity" exists, that I wanted to highlight, but wasn't really able to tie into the earlier post on face processing.

What they found that so intrigued me was that, when looking at photographs of emotionally expressive faces, autistic children with better social and communication skills spent more time looking at the mouth rather than the eyes:

Analyzing whether there was a negative relationship between the amount of social and communication impairment and the factors differentiating between the two groups [i.e., the autistic and control groups], we analyzed the correlation between z-transformed ADI-R scores and the looking time data for the group with ASD. As there was a high correlation between the social and communicative impairment scales of the ADI-R (r = .83, p < .01), we combined these into a single averaged z-score. This score correlated negatively with overall total looking time in the whole screen (r = -.76, p < .01, one-sided). Furthermore, there was a negative correlation between social/communication ADI-R score and percentage of looking time directed at the mouth (r = -.62, p < .05, one-sided).

In other words, the higher the children scored on measures of impairment in verbal communication and reciprocal social behavior, the less time they spent looking at the mouth.

This might seem counterintuitive, if you're used to thinking of autism in terms of poor eye contact and avoidance of strong social stimuli --- the children who were most strongly "autistic" according to their degree of social and communicative impairment were the ones who displayed the most "normal" pattern of face scanning.

I think that's interesting, and points toward the conclusion I came to in this earlier post: that there's not a straight line connecting an obviously "autistic" behavioral phenotype with any particular impairment.

The study authors hypothesize that the presence of verbal ability far in advance of social skills might bias an autistic person to look more at the mouth for social cues, because the mouth is the source of language, and a verbal autistic person might try to harness their language-processing skills to help them decode these social signals:

Contrary to what Klin et al. (2002) found for adolescents with ASD when watching complex social scenes involving conversation, we found less scanning of the mouth in the group with ASD. However, in agreement with Klin et al. (2002), we found that looking at the mouth is negatively related to the severity of social and communicative impairments (notably, Klin et al. (2002) only included social scales). Specifically, we found that the higher the social and communicative disability, the shorter the time spent looking at the mouth. Why did Klin et al. find more mouth looking in ASD while we find an opposite trend? Given that Klin et al. studied adolescents with autism that had severe socio-emotional problems but normal intelligence, one must assume they were quite verbal (the intelligence test used in Klin et al. study includes many verbal subtests). It would not be surprising if a sample of persons with ASD biased in this way looked preferentially at the mouth rather than the more emotional eyes in a complex social setting involving conversation (see also Adolphs et al., 2005). Notably, we included children at all symptom levels in our study, not only the high-functioning individuals. If our interpretation of the discrepancy between our findings and the findings of Klin et al. is correct, it predicts the direction of abnormality of mouth scanning. It is related to the balance of socio-emotive and verbal skills of the participants, where predominantly verbal individuals will be expected to look preferentially at the mouth. To test this hypothesis, the sample must be heterogeneous regarding these two symptom areas.

I think I should mention, also, that the two experiments being compared in this passage used very different kinds of stimuli; Klin et al. had their study participants watch clips from a film adaptation of Edward Albee's play "Who's Afraid of Virginia Woolf?", which naturally involved spoken dialogue as well as expressive faces, while de Wit et al. just showed a series of four still photographs of emotionally expressive faces.

(The presence of spoken language, whether in a movie or other video I'm watching or a real-life conversation, often leads me to look preferentially at the mouth of the person speaking, since I have difficulty understanding spoken language and find that reading a person's lips while also listening to their speech helps me understand it better. Maybe Klin et al.'s highly verbal autistic subjects have noticed the same thing).

One last thing: in the passage I quote from de Wit et al.'s discussion of their results, they use functional-level terminology uncritically, despite having produced evidence that somewhat perturbs that notion of an unbroken, internally-consistent hierarchy of greater to lesser autism severity. I have mentioned before that I am skeptical of functional levels as anything more than somewhat-tautological descriptors of IQ and language ability, and it is with this understanding (and also a desire to let the authors speak for themselves, even when I might not agree with them) that I have reproduced those terms here.

DEWIT, T., FALCKYTTER, T., & VONHOFSTEN, C. (2008). Young children with Autism Spectrum Disorder look differently at positive versus negative emotional faces Research in Autism Spectrum Disorders, 2 (4), 651-659 DOI: 10.1016/j.rasd.2008.01.004

DSM-V to Unify Autism Spectrum, Emphasize Autism "Severity"

Sarah and Sadderbutwisergirl have both posted about this article in last Monday's New York Times, which discusses the American Psychiatric Association's possible abandonment of Asperger syndrome as a separate category in the upcoming DSM-V.

The last time I blogged about autism in the DSM-V, almost a year ago, the Neurodevelopmental Disorders Work Group was still gathering evidence, asking questions and trying to determine its priorities. Among the questions they asked in their November 2008 report were:

1) How to describe the "spectrum" of disorders now known as ASD (e.g., how many domains will define the disorder);
...
5) Whether Asperger's disorder is the same as "high-functioning autism";
...
7) How to include considerations of severity and impairment in diagnosis (currently defined as "qualitative impairments") ...

By the time of their April 2009 report, the work group seems to have found answers to these questions.

The Workgroup is considering a change in DSM-V that would replace the Pervasive Developmental Disorder (PDD) category with the title "Autism Spectrum Disorders" (ASD). The change would utilize a single diagnosis for the disorders currently entitled: Autism, PDD-NOS and Asperger disorder. Several factors support making this change:

• A single spectrum better reflects the pathology and symptoms.
• Separation of ASD from typical development is reliable and valid, while separation of disorders within the spectrum is variable and inconsistent.
• Individuals with autism, PDD-NOS or Asperger disorder often are diagnosed by severity, rather than unique, separate criteria defining the three diagnoses.

The Times article quotes several work-group members on their reasoning behind the proposed merger of autism-spectrum subcategories:

"Nobody has been able to show consistent differences between what clinicians diagnose as Asperger's syndrome and what they diagnose as mild autistic disorder," said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.

"Asperger's means a lot of different things to different people," Dr. Lord said. "It's confusing and not terribly useful."

...

Dr. Susan E. Swedo, a senior investigator at the National Institute of Mental Health who heads the diagnostic manual group working on autism, acknowledges the difficulty of describing such a variable disorder. Dr. Swedo said the plan was to define autism by two core elements -- impaired social communication and repetitive behaviors or fixated interests -- and to score each of these elements for severity.

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."

The proposed elimination of autism subtypes comes at the very moment when research suggests the disorder may have scores of varieties. Investigators have already identified more than a dozen gene patterns associated with autism, but Dr. Lord, of Michigan, said the genetic markers "don't seem to map at all into what people currently call Asperger's or P.D.D."

Nor have many of these genes been linked to distinct sets of symptoms. Until research can identify reliable biological markers for autism subtypes, Dr. Lord and other experts say, it is better to have no subtypes than the wrong ones.

I do think it's a step in the right direction to collapse all these categories --- autism, Asperger's and PDD-NOS (which was always just a catchall, "Everything Else" category anyway) --- into a single, more flexible one. The criteria for all the different existing categories are really arbitrary, having more to do with one's developmental history (i.e., at what age did you learn to talk?) than with one's current capabilities, and I think the current organization of the PDDs is more a historical artifact than it is logically or empirically based.

However, I have problems with the concept of autism severity they're proposing.

The two domains they propose as being diagnostically relevant, and which will form the basis of a given autistic person's "severity" rating --- social communication and repetitive behavior/fixated interests --- don't seem to have a lot to say about an autistic person's actual strengths and weaknesses. While I can see a communication impairment causing problems in someone's life, and a diagnosis of autism helping that person get the right therapies, services and accommodations they need to minimize those problems, I don't think that unusual social interactions, repetitive behaviors or eccentric choices of hobbies pose many problems for autistic people in themselves. Such "pathological" pursuits can actually be highly successful coping strategies, helping to defuse the intense, chronic stress and anxiety many of us feel. They might also be avenues through which we can develop, or exercise, a talent or skill.

I see no mention in the work group's discussion of what constitutes "severe" autism of any of the sensory, motor, cognitive, emotional or executive-functioning difficulties that can pose serious problems for everyday functioning, self-care and independent-living skill acquisition by autistic people. While communication impairment (on both the sending and receiving ends!) and social agnosia can be severely disabling as well, I still think these criteria are more a list of traits that mark us as Other than they are an accurate gauge of our mental well-being.

That bothers me because, by focusing on such external, superficial characteristics, the new criteria ignore the reasons for our behaviors --- and thus, the question of whether a given behavior is helpful, harmful or neutral --- to consider only the extent to which they differ from "normal" behaviors. Thus, an autistic person who can pass for neurotypical is automatically assumed to be better off than one who can't.

To the extent that simple discrimination accounts for many (but not all) of the problems autistic people face in life, that might well be true. But to the extent that there are sometimes severe impairments associated with autism, that may or may not correlate with one's ability to pass, I think this single-minded focus on appearances does autistic people no favors.

Michelle Dawson critiqued these proposed changes in June, and came to similar conclusions:

The assumption that having more obvious autistic traits and abilities is bad ("more severe") has resulted in prejudicial judgments in the literature. An autistic boy (who has accomplished more as a child and young adult than most people, autistic or otherwise) with a full-scale IQ of more than 100 and a strong performance on numerous tests is judged to be "low-functioning," because he is so obviously atypical. That is, he is judged to be very "severely" autistic (Bonneh et al., 2008; Belmonte et al., 2009), and this must solely be a bad thing. In Aldred et al. (2004), preschool autistic children are falsely judged to be "low-functioning" or "high-functioning" solely on the basis of presumed autism "severity" falsely drawn from ADOS scores. It is being falsely and prejudicially assumed that an autistic whose traits and abilities are more obvious must function poorly.

The proposed DSM-V changes will enhance societal prejudices against autistic traits and abilities. These prejudices already serve to prevent autistics whose traits and abilities are more obvious from being considered able to learn, to communicate, to make decisions about our lives, to walk around freely, to be employed, etc. Under the proposed DSM-V changes, autistics who are highly and obviously atypical would be even more harshly judged, without there being anything approaching a sufficient empirical rationale for this. Autistics whose communication and social interaction is highly atypical, or who most strongly pursue their focused abilities and interests (something which has widely been acknowledged leads to good outcomes, but this has largely not interested researchers; Howlin, 2005), will now be at risk of being regarded as "most severe." This is at a time when the term "severe autism" is popularly equated with low expectations, hopelessness, dread and horror.

Dawson goes on to point out that "severe autism" is commonly invoked to justify abuses committed in the name of therapy. I think this is an excellent point, and well worth considering in a society where autistic people (as well as many other people with developmental disabilities or mental illnesses) are at such risk for abuse.