Allen Frances gave us the Asperger’s “epidemic” — just like Al Gore gave us the Internet
NPR ran a story yesterday about the controversy over the exclusion of Asperger’s from the DSM-V. The story did not really cover the controversy so much as provide a platform for Allen Frances to present his opinion, without any supporting evidence or opposing viewpoints.
There are several problems with Frances’ take on the “Asperger’s epidemic.” Many of these are covered thoroughly by Emily Willingham here and here, and by Kristina Chew here. I don’t have too much to add to the analysis, other than a little of my own personal outrage.
First of all, NPR’s use of the word “epidemic” is sloppy and inflammatory. Roy Richard Grinker’s book Unstrange Minds does a very thorough job of examining, and explaining, the rising numbers of children with autism and Asperger’s diagnoses (in short: increased awareness, decreased social stigma, diagnostic substitution, and the change in diagnostic criteria). I won’t rehash his arguments in detail here; the book is worth a read. The point is, the DSM does not exist in a cultural vacuum, and there are many other factors contributing to the increase. Yet Frances takes personal credit for this phenomenon. At best, he displays a poor understanding of the reasons behind it; at worst, he has a little bit of a God complex.
Next up: Asperger’s is a “fad diagnosis?” Have you actually met any parents who are willing to go through the grueling, soul-crushing process of getting our kids evaluated and diagnosed — not because our children are truly suffering, but because we are greedy for some undeserved taxpayer-financed services? I know I haven’t, and I cordially invite Allen Frances to produce those parents before continuing to run off his mouth about them.
In the last decade, there has been a wave of sensationalized media claims about pushy parents trying to gain unfair advantage for their kids by seeking trumped-up diagnoses of conditions like Asperger’s, ADHD, bipolar disorder, or Dyslexia. As the story goes, these kids don’t really have any problems — they’re just not excelling academically in the way that their conniving, status-hungry parents had hoped. This narrative glosses over the very real suffering of children and families struggling with mental illness, and it’s never been backed up with any real evidence.
Emily Willingham wrote about Frances’ claim that children who are academically able but “socially shy” are the primary beneficiaries of the Asperger’s diagnosis. She points out that for many kids with Asperger’s or autism, “shy” is an inappropriate and terribly misleading way to describe their issues with social interaction. My son, like Emily’s, reacts to novel social situations with a level of raw terror that is painful to watch. He sobs until he shakes, grinds his teeth, and hits himself in the face. This isn’t “shyness,” folks. It’s a symptom that interferes with his ability to function in typical social interactions. And that’s why Asperger’s, or autism, or whatever the hell anybody wants to call this particular cluster of behaviors this week, belongs in the DSM, and shyness does not. The system we use to allocate educational services, social supports, disability benefits, and medical treatment depends on an official diagnosis for eligibility.
My own child’s allotment of the much-ballyhooed “special programs” that Frances claims [with no supporting evidence] cost taxpayers $50,000 per year is the following: a one-hour home visit each week [except for the twelve weeks that the program is on vacation, and the 16 weeks that it took for us to begin receiving services after initiating the evaluation process] from an Early Intervention specialist. I like her very much and I think she does a great job with my son, but I’m just sayin’: if we’re supposed to be getting $50 grand a year in services, then somebody owes us a big fat check before December 31. Frances implies that services for these kids are unnecessary, and are a “misallocation of school resources” — dredging up the tired old story about Special Ed siphoning money away from the educational programs that matter to “normal” kids.
Frances’ claim that Asperger’s is a “fad diagnosis” also fits neatly with the liberal antipsychiatry argument that all mental illness is entirely socially constructed. Judith Warner describes this school of thought in We’ve Got Issues:
“The antipsychiatry movement … rejected the idea of mental illness entirely … Its cornerstone belief is that there really is no objective demarcation between mental illness and mental health, that the lines between sick and well, pathology and normality, are “largely arbitrary” … And while some antipsychiatry writers now take pains to draw a line in the sand between those who are “truly” sick and deserve medication and those who are not and don’t … they tend to conceive of the deserving few so narrowly as to shut out in the cold anyone who was not a candidate for immediate hospitalization. …Depression that doesn’t lead to suicide, anxiety that stops somewhere short of agoraphobia, obsessive-compulsive disorder that doesn’t make its sufferer scrub his or her hands down to bare bone—none of these appear to qualify as medically treatable conditions…”
“Entirely missing here … is the notion that there is a world of difference between unique personality traits that may be quirky, annoying, or charming, and actual signs of pathology. Or that the difference between personal style and pathology resides in pain, distress, and impairment.”
And that’s my biggest problem with the NPR story: it reinforces the idea that mental illness, and the suffering caused by mental illness, is “all in your head.”
Sarah Schneider blogs at Kitaiska Sandwich.
Allen Frances gave us the Asperger’s “epidemic” — just like Al Gore gave us the Internet appears here by permission.
Sarah Schneider on 01/6/11 in featured, Politics | 4 Comments | Read More
Comments (4)
This is on the one hand just the sort of story I like to avoid at Shift, in that it’s a reaction rather than an action, directing attention to a fire started by a man who deserves less rather than more attention. Though with the three posts cited in the second paragraph already on base, Sarah steps in here and knocks out a grand slam, and it’s hard to resist reposting work like that.
Even so, and for all that I share Sarah’s outrage, I’m struck by the way that in reacting to Frances, so much that ought to confound him and his cohort, were they ever to be confronted with it, is rendered moot and invisible.
Just at the end of Sarah’s piece, quoted from Judith Warner’s We’ve Got Issues, we are reminded:
“Entirely missing here … is the notion that there is a world of difference between unique personality traits that may be quirky, annoying, or charming, and actual signs of pathology. Or that the difference between personal style and pathology resides in pain, distress, and impairment.”
Relevant, germane points, not to be argued with so much as expanded upon. There is in fact not just one world of difference there, there are countless overlapping, constantly shifting yet always adjoining gradations of worlds between “unique personality traits” and the “pain, distress, and impairment” which unambiguously qualify one for whatever meager share of that fabled $50,000 per year happens to be due.
What seems to have been tacitly agreed to by both sides in the argument as framed by Frances is that the autism alphabet consists of two letters, “A” and “Z.” There is open disagreement over who and what those two extremes include and stand for, but the idea that there exists an unbroken and well-populated spectrum between them has been disappeared, however unintentionally, by mutual agreement.
One premise of this site is that the lives of everyone residing along that spectrum stand to be improved to the extent it is made visible. I don’t know if Sarah sees things from this perspective or not, and I don’t mean to blindside her here (after having sought her permission to republish), but I propose that an Allen Frances has more to lose than Sarah’s son were the entire spectrum laid bare in the sunlight, rather than sunk into a vast, dark chasm or “world of difference” between her son and those who may simply be “quirky, annoying, or charming.”
Gwen McKay, Julia Bascom, and I have each weighed in on the notion that there’s nothing static about the autistic spectrum. People not only move around on it, they slide onto and off of it as well. Autism does not happen in a vacuum; it is situational — granted, for some, the world itself is their particular aggravating situation. But there are significant costs to being “simply” quirky or annoying as well. There are parts of the world which are effectively and expensively (and yes, painfully and distressfully) off-limits to some who will never (and ought never) qualify for a slice of that $50,000 pie.
So, one of the bloggers Sarah links to above finishes her takedown of Frances by accusing him of pettiness. What I’d like to suggest is that when you tangle with a flea-bitten dog, you may well wind up with fleas yourself — or, when you take on an Allen Frances on his own terms, buying into his framing of the argument, you are likely to come away participating in a similar pettiness, perhaps setting back your own cause by doing the dirty work of divide-and-conquer for him.
Mark: all good points. I have written before about my frustration with the conflict between two models of autism.
The first model is the one I believe best reflects reality: Millions of people without a formal diagnosis are part of a broad autistic phenotype, and the “spectrum” metaphor falls short because it describes only one axis of variation [you’re either “more” or “less” autistic], and fails to capture any of the variation along hundreds of other axes. In addition, I agree that no individual sits at a static point along the spectrum, or even in a more multi-dimensional model — they shift around and on and off the model completely.
But the model used for allocating medical, educational, and social services is binary. You’re “in” or you’re “out.” And I am constantly aware that every time I advocate for my son by arguing that he belongs “in,” without challenging the model itself, I validate it.
The gatekeepers have a big investment in the “in or out” model, because nobody has come up with a workable alternative for allocating services yet. In an ideal world, services would be tailored to the individual, and we would cut out the middlemen in charge of determining eligibility. Unfortunately, we’re not there yet.
I completely agree that everybody benefits if we can shift the public understanding of autism closer to the first model. But that battle may not be won in my lifetime, and in the mean time I have to advocate for my son in the here and now.
All well put, Sarah. It was only while posting the piece last night that I realized I might “innoculate” Shift against validating that “in or out” model. In the context for which you were originally writing, no such explanation or defense was needed. If I weren’t flying by the seat of my pants here, I’d like to think I’d have given you more of a heads-up.
Thanks for using the word “binary” — that’s it exactly. Not that I’m finding much time to write, but it ties in with my theme this year of The One vs. The Many:
“A choice between alternatives already presumes dualism, which archetypally brings with it the divisive sword. (No Greek Olympian, by the way, had a sword for emblem; the spear of deeply penetrating insight, yes; but no sword to cut in two.) The fantasy of dualism ultimately refers to monism and is therefore very different from polytheism. Dualities are either faces of the same, or assume a unity as their precondition or ultimate goal (identity of opposites). Even a radically irreconcilable dualism is merely the struggle between parallel Ones. Monism and dualism share the same cosmos.”
I’ll get it boiled down one of these days. 😀
In the 19th century they had female hysteria, which was a social and cultural pathology interpreted by male reductionist science as a neurological condition. Today we are faced with a generation of young adults more at home in audio-visual media than anything resembling human community, and society has again decided to construe the resulting impairment as no more than a neurological condition.