The next post or two will go in a different direction from previous posts. I recently wandered into my city’s main public library with an hour to kill and ended up in the mental health section, enjoying the pleasure of browsing. One of the books I pulled off the shelf was journalist Steve Silberman’s NeuroTribes: The Legacy of Autism and the Future of Diversity. At over 500 pages, including notes, NeuroTribes is probably the heftiest non-academic history of autism (or, rather, of the concept of autism) one will find. Silberman made a name for himself as a tech journalist, and it was through his Silicon Valley connections that he first became interested in autism, with his article “The Geek Syndrome” appearing in Wired in 2001 (p. 10).
One could say a lot about any book of this length. In my
mind, NeuroTribes is at its best in the chapters covering the rise of
the parents’ movement, especially around such figures as Navy psychologist and
parent of an autistic boy Bernard Rimland, who published Infantile Autism (1964)
and helped fight the “refrigerator mother” etiological theory of autism while
also co-founding the main vehicle of the early parents movement, the National
Society for Autistic Children, in 1965 (Chapter 7, pp. 261-334). Silberman
deftly accompanies through Rimland’s polemics against Bettelheim etl al’s
psychoanalytic mother-blaming (“refrigerator mothers”) explanations of autism
on to the constitutive tension within the parents’ movement between prioritizing
a cure for autism and prioritizing psychosocial and environment
accommodations. From there, we are led into the territory of Defeat Autism Now!
(DAN!), with its dubious alternative medicine practices rooted in megavitamins,
chelation therapy, and much more, and then on from there in the Vaccine Wars of
the 1990s and early 2000s and the international panic about supposedly growing
prevalence rates of autism (see especially Chapter 10, pp. 381-423).
Rimland’s dérive from relatively mainstream scientist
to fringe peddler of DAN! treatments, polemicist against randomized controlled
trials, and professional anti-vaxxer is especially fascinating. It is a career
arc that has sadly become all too familiar after the COVID-19 pandemic. Indeed,
in reading this part of NeuroTribes, I had the feeling that I was
reading much more than a history of autism; in so many ways, this is the history
of the present, viewed sub specie autism, so to speak.
This is a book teaming with interesting details, such as a
meticulous account of the many real-life models for the characters in the 1988
smash hit movie Rain Main (pp. 354-380) or a blow-by-blow account
(literally) of the use of behaviorist aversive techniques to normalize autistic
children in ABA (applied behavior analysis) founder Ole Lovaas’s labs (pp. 304-327).
I was especially happy to see that Silberman explored the connection between
ABA for autism and the execrable deployment of ABA as a form of conversion
therapy for gay or trans children. This is a history that, as far as I have
read, the mainstream behaviorist psychology organizations have only recently
begun to reckon with publicly.
Sometimes, the details turn into causal claims, though, that
I find a bit dubious. For example, in a discussion of the rise in autism
prevalence estimates in the 1990s, Silberman asserts that a misprint in DSM-IV that
ran uncorrected for six years contributed to the global impression of a rise in
autism prevalence.
“In fact, the numbers were rising a
little too steeply, because the DSM-IV editors had made a small but
crucial error in the final run-up to publication. Instead of requiring that a
child display impairments in social interaction, communication, and behavior
before getting a diagnosis of PDD-NOS [persistent developmental disorder, not
otherwise specified—i.e., the ‘autism, other’ category in DSM-IV parlance], the
criteria [list] substituted the word or for and.” (p. 401)
The “because” here is unmistakably causal. But it is, of
course, an open question just how much this typo actually contributed to the
very real social fact of an increasing rate of autism diagnosis. A single
source is cited here, Roy Grinker’s Unstrange Minds (2008, p. 140). But
when I looked up the passage in Grinker, I found as actual empirical evidence
of causation only one “small study, the results of which were published in a
letter to the editor” in Journal of the American Academy of Child and
Adolescent Psychiatry, which compared clinician ratings with DSM-IV
criteria. This is no way to establish causality. Grinker himself concludes, “Although
it is unknown whether those diagnostic criteria produced a large number of
false positives, they certainly didn’t reduce the number of cases” (Grinker
2008, p. 140).
I am going on at length about what may seem like a minor
detail in what is otherwise I think a generally sound and careful discussion of
how changes in diagnostic criteria, mixed with increasing public awareness, led
to an artefactual rise in global rates of autism diagnosis, which in turned
fueled a panic about toxic chemicals and vaccines that laid the groundwork for
the contemporary anti-vaxx movement. My reasons for pausing here is that I
think it is an illustration of the slipshod standards of evidence and
argumentation in the NeuroTribes—I’m treating this slide from “we don’t
know” in Grinker to “because” in Silberman as indicative of a broader problem
in the book. Quite frankly, whenever Silberman departed from simple description
into the realm of explanation or interpretation, I found myself mistrustful.
This is a book with a message, a sermon almost.
The sermon is a narrative of redemption. In a nutshell, it
goes like this: in the late 1930s and early 1940s, two different researchers,
working independently, stumbled upon autism. (Whether they stumbled upon the
thing itself or the construct of autism is never really clarified.) These two
researchers were Hans Asperger in Vienna and Leo Kanner in Baltimore. Asperger
got it right: he recognized that autism was a continuum, a spectrum, and was
highly prevalent (contrary to the impression made by the former diagnosis
associated with his name, Asperger studied people who would not have met
criteria for the DSM-IV’s diagnosis of Asperger’s). Kanner got it wrong. He
held that autism was a narrowly-defined and highly rare condition. Incidentally,
Kanner borrowed heavily from Jewish refugee scientists who had worked in
Asperger’s lab, but he did not give them due credit. Meanwhile, Asperger
remained marginal and largely unknown in English because of unfair association
with Nazism. Eventually, “Asperger’s lost tribe”—an expression used so
repeatedly that it made it into the index (see pp. 213, 222-23, 260-261, 368-, and
429)—was rediscovered thanks to the efforts of British psychiatrist and mother
of an autistic child Lorna Wing, as well as the self-advocacy movements of
adult Autistics themselves (pp. 424-468; “Autistic” capitalized hear is used by
way of analogy with “Deaf” as an identity label in Deaf culture). In a word, we
are given a redemption narrative, a story of the Fall and of the beginning of a
return to Eden—with the notion of autism spectrum disorder in DSM-5.
People much more knowledgeable about all of this than me
have criticized Silberman for this depiction of Kanner, for the Whiggishness of
his history and its presentism, and for much else. I have no doubts that almost
everything in the previous paragraph would come under fire from trained
historians. Autistic historian and philosopher of science Sam Fellowes has a
helpful review that explores some of these problems. Fellowes also argues that Silberman uncritically embraces contemporary ways
of classifying autism without exploring alternative approaches to
classification, such as models based on rigorous subtyping rather than
dimensionality. Fellowes also raises the intriguing question of what would have
happened if Kanner’s “infantile autism” had not won out over its main rival
categories, childhood schizophrenia or childhood psychosis. Indeed, after the
publication of Kanner’s landmark article on autism in 1943, the psychoanalyst
Louise Despert objected that Kanner had simply come up with a new name for what
she had already described extensively under the label of childhood schizophrenia
(Silberman, pp. 180, 194-195). Silberman tends to treat it as self-evident that
the separation of autism from childhood psychosis was the correct move, but
both autism and schizophrenia remain highly heterogeneous
categories.
My point here is not that Despert was right and Kanner wrong,
but that there is, rather, a certain historical contingency to the classification
of mental and neurodevelopmental disorders (even that division is historically
contingent!); and that contingency bears not only on research, but on how people
come to understand themselves, differentiate themselves from others, and form
social movements. Things could have gone very differently. We are not dealing
with “natural kinds” here, at least not in any simple sense. (In the future, I
will write a post about the debate around natural kinds in philosophy of
psychiatry.)
Silberman’s redemption narrative functions to legitimize a
turn away from the never-ending cash sink of biomedical attempts at a “cure”
and instead direct our focus to environmental and psychosocial transformation. I
largely agree with this project, but the same could be said for psychosis,
schizophrenia, and a host of other conditions. We ought to be doing more here
and know to make those sorts of changes and social supports available that
would dramatically change the arc of people’s lives, rather than putting so
much money into biomedical searches for cures. We ought to be changing the
world more, rather than trying to change people so much. At any rate, it would
be less expensive.
Silberman’s redemption narrative thus forecloses certain
possibilities for solidarity. Where are the parallels and passerelles with
Mad Pride? With the social movements around de-institutionalization? With the
consumer/survivor/ex-patient (c/s/x) movement? What if, instead of coming home,
the lost tribe joined up with the other lost tribes in the wilderness and decided
to make a new home? Silberman does discuss the concept of neurodiversity and
autistic self-advocacy in Chapters 11-12, but he barely mentions, except in
passing, the attempts by some scholars and activists to broaden the concept of
neurodiversity to conditions such as schizophrenia or BPD.
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