The following is an opinion piece by one of our readers, Jonathan Mitchell. In this blog Jonathan reviews Steve Silberman’s recently published book “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity”. Contrary to Mr. Silberman I steadfastly believe in research and medical treatment for those autistic individuals that may need the same. Although Mr. Silberman’s writings are of great interest to me, I have not read his book and will therefore forego providing an opinion of the same. In the meanwhile, I invite readers who have read the book to provide their own comments.
Jonathan is a self-described 60-year-old man on the autism spectrum who does not agree with the neurodiversity perspective and actually lived through the refrigerator mother period, having spent many years in psychoanalysis as a child.
Steve Silberman’s book, Neurotribes, soon to be number eight on the New York Times bestseller list, is now the hottest news story and commodity in the world of autism. He’s been lauded by the New York Times, NPR, and other media outlets for meticulous research on the history of autism and how it relates to what’s going on today.
One of the underlying themes of Silberman’s book is that autistics were underdiagnosed in the past, until Lorna Wing’s work changed the world view of autism, resulting in higher rates of diagnosis.
Silberman cites Leo Kanner, the person credited for first discovering the syndrome of autism in eleven children he saw over the course of some years during the late 1930’s and early 1940’s, as the culprit. His reasoning is that Kanner, who first gave the condition of the children he assessed a name had a very restrictive criteria for diagnosing autism. His definition was those of lower functioning autistics as opposed to Asperger’s, Frankl’s, and later Wing’s more expanded definition which included people more mildly on the spectrum.
One of Silberman’s tenets is that many people who should have received an autism label were denied appropriate services and supports that could have helped them cope because of Kanner’s parsimony. This also lead people not to embrace the neurodiversity model of autism in which services and accommodations can solve or at least mitigate problems but instead look for causes and cures. Silberman writes: In real world terms being locked out of a diagnosis often meant being denied access to education, speech and occupational therapy, counseling, medication, and other forms of support For undiagnosed adults, Kanner’s insistence that autism was a disorder of early infancy meant decades of wandering in the wilderness with no explanation for constant struggles in employment, dating, friendships and simply navigating the chaos of daily life. While by building foundations of a society better suited to its need and interests. After stating this, he goes on to subsequent chapters in which he alleges various ham radio operators and very prominent people in the IT field are autistic or have or had autistic traits.
He makes numerous talking points in his book, interviews and blog posts to support this allegation. He writes about Leo Rosa (Son of neurodiversity proponent and one of the authors of the thinking person’s guide to autism), a boy on the lower end of the spectrum, stating that Kanner’s influence still prevailed by the time this boy, not born until the twenty-first century by the time he was diagnosed.
Silberman posts the following comment on the Marginal Revolution blog:
The most significant and obvious way in which Kanner’s understanding of autism was monolithic is that every patient described in that paper is a child. Kanner’s model of autism did not include teenagers and adults. That’s not exactly his fault — he was a child psychiatrist. But the exclusion of teenagers and adults from autism was an omission of Kanner’s that Lorna Wing went on to fix with the invention of Asperger’s syndrome (Wing, “Asperger’s syndrome: A clinical account, 1981) and the broadening of the criteria to include all age groups (as well as the expansion of the lay concept of autism to include adults that followed “Rain Man.”) And note: even in that 1943 paper, Kanner makes the surprising assertion, “There is no fundamental difference between the eight speaking and the three mute children.” That’s overlooking a lot of heterogeneity for the sake of delineating a category. Lorna and Judith Gould originally felt that “Kanner’s autism” as a useful concept should be thrown away (“the findings of the present study bring into question the usefulness of regarding childhood autism as a specific condition” – Wing and Gould, 1979); but they ended up compromising and creating the image of the spectrum, which echoed Asperger and Georg Frankl’s concept of the autistic “continuum” that included children and adults.
In his book, Silberman states that Kanner would have excluded an individual that his colleague George Frankl (allegedly formerly Asperger’s colleague) had written about for an autism diagnosis because he had the genetic condition tuberous sclerosis. He writes that epilepsy was also a basis on which Kanner excluded diagnoses of autism. Silberman quotes writer Adam Feinstein, author of “The History of autism”, as stating he’d only seen 157 cases of autism by 1957 and that Bernard Rimland had stated that Kanner told him he’d excluded nine out of ten people that other doctors had referred to him for a possible diagnosis as being autistic.
Before examining these talking points, here is Kanner’s original article He also followed the cases into adulthood nearly thirty years later.
In actuality, there was a wide range of functioning between the eleven children whom Kanner (and perhaps George Frankl and others) evaluated. Eight out of eleven of them had speech and could carry on semi-normal conversations. Silberman, to bolster his argument, quotes Kanner as saying “There is no fundamental difference between the eight speaking and the three mute children.” However, he omits the first part of this sentence. As far as the communicative functions of speech are concerned, there is no fundamental difference between the eight speaking children and the three mute children. Silberman then talks about Kanner’s description of some of the eight speaking children and how Kanner emphasizes their speech deficits, but neglects to cite the parts of Kanner’s 1943 paper where he emphasizes some of the instances of speech in the so-called mute children. So, it was only in terms of speech, citing both the idiosyncratic speech of the eight milder children and some instances of speech in the more severely afflicted three cases.
Kanner’s first two cases, Donald and Fredrick, would be considered high-functioning even by today’s definition where a high percentage of autistics are still considered to have intellectual disabilities. Alfred, one other case had an IQ tested at 140. Even one of the mute chldren, Virginia, scored 94 on the Merril-Palmer nonverbal IQ test and the testing psychologist stated that this was likely an underestimation of her intelligence. Some of the others would be considered more severe so there was a wide range between Kanner’s cases.
Kanner ends his paper by stating that autism may be more common than it appears as well as emphasizing differences between the kids: The eleven children offer as to be expected offer individual differences in the degree of their disturbances. But even a quick review of the material makes the emergence of a number of essential common characteristics appear inevitable. These characteristics form a syndrome not heretofore reported which seems to be rare enough yet is probably more frequent than is indicated by the paucity of observed cases.
In spite of Silberman’s allegations, Kanner seemed to have been far more prescient than almost all of his successors to date as far as taking an interest in adult autism. In the first paragraph of his 1943 paper he writes: Since none of the patients has obtained an age greater than eleven years this must be considered a preliminary report to be enlarged upon as they grow older.
Kanner indeed kept his promise, publishing a follow-up paper on his eleven charges in 1971 when he was well into his seventies. He first reports on Donald T, who has done relatively well in spite of his autism, obtaining a college degree and working as a bank teller and would certainly not appear to be low functioning as an adult. He reports on Frederick W who worked at the national office of air pollution and was lauded by his supervisor. Another individual, Herbert, though still mute worked on a farm and carried out useful tasks.
Though he states a patient of George Frankl’s who had tuberous sclerosis and epilepsy would not have been diagnosed by Kanner on that basis, Silberman neglects to provide any documentation for this in his copious endnotes. This certainly is not true as Kanner child number ten, John F. did in fact have epilepsy and a focal abnormality in his left occipital lobe on an EEG which Silberman did not mention in his book. Elaine (case 11) also went on to develop epileptic seizures. However, this started in her twenties as reported in Kanner’s follow-up article and it is unclear whether or not her epilepsy was known in the 1940’s when Kanner first wrote about her.
Did Kanner regard autism as necessarily being rare in the 70’s? Based on one comment he made in the follow-up article, the answer would appear to be no: It is well known in medicine that any illness may appear in different degrees of severity, all the way from the so-called forme fruste to the most fulminant manifestation. Does this possibly apply also to early infantile autism?
Kanner wrote this in 1971 at least a few years before Lorna Wing’s and Judith Gould’s attempt to find more people with autism and consider it a spectrum that Silberman alleges.
Autism wasn’t even classified as a category in the IDEA until 1991 which is also correlated with the huge spike in diagnoses. Services for children weren’t widely available until then. One of the few things Silberman gets right is that no one really cares about the problems of autistic adults. This is nothing new in spite of the fact that Kanner, going back to the nineteen forties actually did take an interest in his patients as adults and followed them for nearly three decades.
It would seem that blaming Kanner for this is indeed a stretch. This historical perspective on Kanner’s work may serve the purpose of helping Silberman score points for the neurodiversity movement, but really does not seem to me to accomplish anything else. This is aside from the fact that it is plain inaccurate.