Neurotribe or Diatribe

My previous two blogs dealt with some of the historical misinterpretations in the popular book Neurotribes. My good friend Olga Bogdashina commented that it would be a good idea to reblog my original review of the book. The same is lengthy but provides a factual account of Kanner’s work that may help visualize him in proper perspective.

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I finally got a chance to finish reading Steve Silberman’s widely publicized book “Neurotribes”. The same received the prestigious 2015 Samuel Johnson prize for non-fiction and some journalists have touted the same as the definite book on autism’s past. Being a history buff myself I decided to give it a try and read it during my long layovers on a round trip to Russia. Fortunately, I managed to read it all with a few hours to spare. On the other hand, being my usual self, I misplaced the book with all of my annotations. This may play well for the reader as a complete revision of the book with all of my annotations would have required a longer book than the one presently reviewed.

The book itself has been proclaimed to be Neurodiversity’s manifesto and as such makes de rigueur claims of historical figures as having had Asperger’s, providing a putdown of psychiatry and medical sciences in general, and somehow managing to talk peripherally about homosexuality and/or transgender issues. The aim of such a divagation is to ascertain that autism spectrum disorders are an expression of normal variability within the human genome and that any handicaps attributed to the condition can be overcome with proper accommodations. If this were the case it is easy to see why Neurodiversity proponents downplay the need for treatment and research and find especially offensive the use of Applied Behavioral Analysis (ABA). In order to sustain their allegations they claim that autism has always been around and that there has been no real increase in prevalence throughout the last few decades. They also tend to over generalize suggesting that a significant proportion of engineers, radio aficionados, science fiction buffs, and computer scientists fall within the autism spectrum. All of the aforementioned allegations are made without dwelling on arguments that can falsify their position while simultaneously trying to destroy the credibility and reputation of those who oppose them. In their exposition they will usually not provide references for their work, or in the case of Mr. Silberman, those given may be untraceable and therefore worthless. Neurotribes touches on all of the aforementioned aspects while following the Neurodiversity blueprint to a tee.

Neurotribes is well written, entertaining, but poorly organized. The book itself tends to go on tangents as per an author who thought too precious and valuable to loose any piece of prose he had worked upon. For someone having read the previous historical perspectives on Asperger’s life within the Nazi regime from Adam Feinstein, the outcome of Kanner’s patients from Olmsted and Blaxill, and the improbable historical coincidence of having had a simultaneous description of autism by both Kanner and Asperger from Michael Fitzgerald, the book lacks novelty and is 200 pages too long.

The book glorifies autism by exalting its gifts but failing to emphasize its handicaps, drawbacks or comorbidities. It is true that the author mentions that autism is a handicap but at the same time compares the disability to computers using different operating systems, one with Microsoft and another using Linux. This comparison trivializes many of the handicaps faced by autistic individuals and is offensive to those more severely affected.

The book itself is peppered with non sequitur comments in regards to accommodations. It seems that the author’s intent was to create a mantra to be displayed with pride by those gullible enough to accept as truthful his narrative. In this regard the history of autism, according to Mr. Silberman, is one of heroes and villains. In Neurotribes Leo Kanner is given the distinction of being dressed with the dark cloak of a villain. Indeed, Kanner is depicted as an ostentatious, if not pedantic, academician who inexcusably blamed parents for their children’s misfortune by coining the term refrigerator mothers. Silberman’s provides a glimpse into Kanner using tinted glasses. Indeed in concluding the work we must presume that Kanner was a fraudulent researcher who evidently plagiarized the work of Asperger. In all of this, Asperger remains a saint, the hero of the story, who barely survived the Nazi regimen while remaining a good Catholic man. In this role Asperger is portrayed as the embodiment of Neurodiversity ideals. All of the above assertions, the core of Mr. Silberman’s book, are incorrect or unsustainable and only reflect his personal bias. I would like to use Kanner’s words in his own defense and let the reader decide for himself the veracity of Silberman’s historical account. I am providing the quotes below from Kanner’s articles in their entirety, as the original publications may not be available to most readers.

Kanner abhorred the use of aversives and thought of each child as a unique person with individual needs. For those requiring medical assistance, similar to Asperger, he valued an integrative approach tailored to the individual. He openly criticized the use of operant conditioning even before Lovaas rose to fame:
“By this time it should be- but very likely is not- quite commonplace to state that one of the combined goals of medicine, psychology, social work, and education is to make it possible for children to attain their optimal condition of comfort and smoothness of functioning. No matter how simple this formulation sounds, civilization took a long time to arrive at it, and to many people and in may areas it still has the ring of novelty. We are, after all, not too far behind from the era of the rod and the dunce cap and the bending of the twig to insure the haphazardly preordained inclination of trees”. (1)
“Particular emphasis should be placed on the adjective “optimal” contained in the formulation. The optimum which can be reached is, of course, not identical to each individual…[he] can be helped if we examine the specifics of the underlying disharmony of the integrants and work for a better consonance between them.”(1)
“The concept of operant conditioning occasionally has been misapplied; in precious zeal, this approach to therapy has been championed as a foregone success on the basis of what are in fact, fragmentary attainments.” (2)

Kanner opposed characterizing individuals based on psychometric tests, again emphasizing the individuality of the subject:
“These terms, if taken literally, seemed to imply that the scores, meant originally to assess a child’s anticipated adaptation to classroom instruction, represents a measurement of his “psyche” or “mind”. Needless to say that this is glaring fallacy. There is more to psyche or mind than a few items of cognition selected for a clearly circumscribed purpose.”(1)

Kanner’s defense of children was both personal and emotional; furthermore his quest for accommodations far anteceded that of the Neurodiversity movement. In this regard he advocated for parents to accept their children for who they were, not who they wished they could be:
“I recall a number of children who, being told how well they had done in a series of tests, implored me prayerfully not to report this to their parents. They had been told much too often at home and at school that they owed it to their endowment to do better and that their failure to equate achievement with tested potential must be ascribed to laziness, stubbornness, self-imposed lack of motivation, or what have you. To the child’s own quandary about himself is added opprobrium of the all-knowing adult’s disapproval.”(1)
“Billy could indeed do better, not if- as the phrase has it- “he only would”, but if his circumstances had made it possible for him to do better, if there were no depressants of his native ability arising from any number of equally significant integrants.”(1)
“Slowly, gropingly, we are in the process of learning how to evolve practical ways to increase the comfort and productivity of those whose progress has been lessened by shortcomings of the physical and social integrants of maturation.”(1)

In many occasions Kanner opposed the institutionalization of children and favored those interventions that fostered socialization and acceptance:
“In the early 1940’s Goldfarb reported his studies of the fate of children who had been transferred from orphanages to foster homes at about three years of age as compared with the fate of children whose total life experience had been with foster families. The former tested as adolescents considerably lower than the latter. The mean I.Q. of the former was 69, of the latter 96. Along with the lower scores went marked personality problems, which included imperviousness, social regression, absence of normal inhibitions, and poor concept formation.”(1)
“In 1946, Pasamanck began to publish his investigations, based on the Gessell developmental scale, which showed that Negro children do not differ in the development of their early functions from their white coeal in the first year and a half of life and that, at least statistically, a decline sets in after the third semester. A similar pattern prevailed in a group of institutionalized white children.”(1)

Kanner deplored that lack of available institutions for youngsters in need of residential and psychiatric care. For a significant number of patients this required their being sent to state hospitals. Kanner surveyed figures for admission to state hospitals for patients under 15 years of age and for many he criticized the credence of the admission diagnosis and necessity for hospitalization:
“This is certainly true of the relatively large number (about one-fourth) of “transient situational personality disorders.” “Mental deficiency” could have been detected without dispatching a child to a state hospital. And what about those retained as “undiagnosed”? (4)

Kanner’s plea to help children in state hospitals and provide them with adequate accommodations was extremely humane and characteristic of him. He was very blunt in his writing about disclosing what others wanted to keep quiet:
“But let us, for the time being, disregard the diagnostic implications. What awaits a child, psychotic or otherwise, when he comes to the state hospital?”
“Under these circumstances, a child so bewildered that he has been unable to function properly even in a familiar environment finds himself suddenly deposited in a swarm of variously maladjusted fellow inmates, often cut off abruptly from any continuity with his previous existence because of hospital visiting rules, distances, and sometimes family inertia……Nor is it a secret that young patients, particularly in the male wards, become targets of homosexual practices.” (4) Contrary to others who would protest and take their complaints nowhere further, Kanner offered a blueprint with different ways for improving the state and care of institutionalized children. (4) He used his own Journal (as an editor) to call into action all of those involved in the care of children into becoming their advocates, acknowledging that intervention at the earliest ages would help those children with difficulties to stay out of mental hospitals and prisons. (7)

For patients who attained sufficient social adjustment and managed to function as self-dependent individuals, mostly well educated and gainfully employed, Kanner said: “Not one of them had at any time been subjected to sojourn in a state hospital or institution for the feebleminded. This seems to be significant in view of our experience that such an eventuality has invariably cut short any prospect for improvement.” As with many other opinions and conclusions Kanner antedated many facts that we are only recently rediscovering: “[talking about good outcomes] The presence of speech before the age of 5 years and the fact of being kept out of state institutions are helpful hints but, being shared with some of the non-emerging children, they can be viewed at best as straws in the wind pointing to prognostic possibilities.”(8)

Kanner, recognized the historical existence of individuals who fell into the spectrum. He lauded their gifts and called for parents and educators to help pave their creative potential while publicizing the dire downward spiral for those who did not receive proper support. Indeed Kanner promoted the civil rights of the individuals to be themselves (a right to their identity regardless of medical appellations). In a certain sense Kanner can be considered the father of the civil rights movement for disabled individuals which is now attributed to the Neurodiversity movement:
“This is the place to retell the story of Willy. Willy was the scion of a noted scientist father and a college graduate mother. He was in good physical health; socio-economic conditions were satisfactory; his I.Q. was phenomenally high. He absorbed erudition like a sponge. Already in pre-adolescence he achieved national fame as a wondrous child prodigy. At 12 years, he delivered a much-admired lecture before a distinguished audience of university notables. No one seemed to notice that Willy had no companions, that he was bewildered, lonely, and miserable in a world in which the everyday pleasures of childhood were denied him. Oversaturated, Willy threw all his learning to the winds, rented a room in a large metropolis, and spent the rest of his life as an obscure office clerk. When he died at 48 years of age, all that he left behind was an album of transportation tokens, the collection and mounting of which had become his interest.”(1)
“In the last few millennia our species has had its gifted and productive thinkers and poets and artists and scientists and explorers. Many of them have advanced our civilization by upsetting deep-seated archaic notions guarded zealously and at times cruelly by mighty autocracies of one kind or another. We are now in a position to spot potential talents at an early age and have the laudable desire to see to it that as many as possible reach their optimum. We can do this only if, as they mature, we as parents, educators, and human engineers can pave their way toward the developments of unhampered automaticity. It is up to us, then, to attenuate the hampering agents, be they organic, emotional, or social, and to encourage rather than crush, spontaneity and self-organization.”(1)
“ I wish I could say that the Willys, the Stevens, and the Jacks are exceedingly rare exceptions. But they are not. They are some of the casualties of the neglect of their right to their right identity, being given no opportunity to think and to plan for themselves, painfully reacting to the kind of upbringing which does not differ too much from computerization and carrying with them the unmitigated results of the disharmony of the integrants of personality.”(1)

Kanner’s explanation as to the refrigerator parents:
“From the start I was greatly impressed with one observation which stood out prominently: The parents of these patients were, for the most part, strongly preoccupied with abstractions of a scientific, literary, or artistic nature, and limited in genuine interest in people. As time went on and more autistic children were studied, the coincidence of infantile autism and the parent’s mechanized forms of living was really startling. This was confirmed by many other observers. I noted then, however: These children’s aloneness from the beginning of life makes it difficult to attribute the whole picture exclusively to the type of early parental relationship that they have experienced….At no time have I pointed to the parents as the primary, postnatal sources of pathogenicity.” (2) Kanner was prompt to criticize the parental blame game stemming from his original description: “The children’s aloneness from the beginning of life makes it difficult to attribute the whole picture exclusively to the type of the early parental relations with our patients.” Later on he would go on to say: “Approximately 10% of the parents did not fit the stereotype, besides, those who did reared other normal or, at any rate, nonpsychotic offspring. Moreover, similarly frigid parents are often seen whose children are not autistic.” (3)

It should be stressed that Kanner was the psychiatrist who stood up preeminently (1968) to criticize Bettelheim at the height of the latter’s popularity and prestige. In the following text Kanner mocks any conclusions attained by Bettelheim:
“The futility of such speculation is illustrated by a recent publication, The Empty Fortress, published in 1967. Its intrepid dust jacket promised the reader that it “sheds new light on the nature, origin and treatment of infantile autism,” but the author of the book, being perhaps somewhat more hampered by actual fact than the author of the dust jacket, felt called upon to employ such qualifications as “maybe”, “perhaps”, “probably”, “possibly”, “as if”, “as it were”, “seemed to”, “suggests”, 146 times in 48 pages of the report of the first case, and he cautions his readers further within the text, “This like other interpretations of Laurie’s behavior, is highly speculative…” (2) In fact, Kanner championed a humane approach to treatment in autism, not psychoanalysis: “ “This modesty, humility and caution must be applied to therapy as well as to etiology, and this is the keynote at certain centers where efforts continue to be made, consistently and patiently, to help these children find their way into a world which is threatening to them” (2) Kanner was tired of the unrestricted blaming of parents and criticized those who joined the chorus chanting “the refrain, Cherchez la mére (which I tried in vain to silence in 1941 in my book, In Defense of Mothers).” He called this blame game on parents, “Poohpoohing description as an obsolete pastime of atavistic nosographers, they started out with interpretations in which the mother-child relationship was put on the pedestal as the only valid etiological consideration.” (3)

Kanner explained his reasoning for having labeled his children as having “early infantile autism” by selecting a term that described the time of the earliest manifestations and their limited accessibility: “We must assume that these children come into the world with an innate inability to form the usual, biologically-provided affective contact with people, just as other children come into the world with innate physical and intellectual handicaps” –This was the conclusion to Kanner’s original paper in 1943. However, Kanner was dissatisfied with the use of the term autism: “For one thing, withdrawal implies a removal of oneself from previous participation. These children have never participated. They have begun their existence without universal signs of infantile response…Nevertheless, in full recognition of all this, I was unable to find a concise expression that would be equally or suitably applicable to the condition. After all, these children do start out in a state which, in a way, resembles the end results of later-life withdrawal.” (3)

Kanner did advocate for adherence to his initial diagnostic scheme. He thought that the dilution of the original concept would lead to an artifactual increase in worldwide prevalence rates that would thus balloon to include any sort of self-diagnosed individual with bizarre behaviors. He and others warned about the “abuse of the diagnosis of autism” declaring that it would threaten “to become a fashion.”(2,3) He adhered to his criteria in order to make diagnosing “more uniformly reliable” (3). Contemporary to his writings he noted that at one point in time other authors introduced the term of pseudo-autism (maybe the antecedent for pervasive developmental disorders not otherwise specified?) for those cases with atypical presentation. This classification rapidly engorged itself to include conditions variously described as hospitalism, anaclitic depression, and separation anxiety. (3) Kanner’s words foretold the diagnostic problems we are presently facing. “An identifying designation appeared to me to be definitely desirable because, as later events proved, there was danger of having this distinct syndrome lumped together with a variety of general categories.” (5) However, in discussing the history of autism, Kanner stood in admiration of Bleuler’s announcement in 1911 which he though would be a prophetic vision. In this regard Bleuler did not speak of schizophrenia in the singular but of the group of schizophrenias. (6) In a different article he commented, “It is well known in medicine that any illness may appear in different degrees of severity, all the way from the so-called formes frustes to the most fulminant manifestation. Does this possibly apply also to early infantile autism?” (8) Even though he admitted as to the possibility of multiple autisms, Kanner believed in the necessity of adhering to strict clinical criteria, specially that of “constitutionality” or “innateness”. Without adherence to these criteria the door would be opened to misleading psychoanalytical considerations: “In the early 1950’s. Rank created the concept of the “atypical child” as an overall designation for children presenting signs of “ego fragmentation” in close connection with maternal psychopathology. The underlying idea was: Why bother about questions of genetics, organicity, metabolism, or anything else if we can proceed promptly with the psychogenic denominator common to all disturbances of the ego? Thus a pseudodiagnostic waste basket was set up into which went “all more severe disturbance in early development which have been variously described as Heller’s disease, childhood psychosis, childhood schizophrenia, autism, or mental defect,” With a perfunctory bow in the direction of “heredity and biology”, mother-infant involvement was decreed to be the sole key to everything that goes on within or around the neonate.” (6) Finally, Kanner lauded the role of both patients and their parent in the diagnostic process and thought they should be involved in deciding criteria for differential diagnosis. Diagnostic criteria in this regard was considered a malleable process: “By far the greatest incentive is coming from child patients themselves, not having read those articles and monographs and unconcerned about existing nomenclature present themselves as they are and thus, as individuals, continue inviting further refinements of criteria for differential diagnosis.” (6)

Kanner regularly dealt with the differential diagnosis of autism, specifically as applied to schizophrenia (3). For his efforts he received the Stanley R. Dean Research Award to the outstanding scientist for major contributions to basic research on schizophrenia. He claimed childhood schizophrenia was a rare condition and that many of the patients so diagnosed in reality fall into an assortment of neuropathological identifiable, more or less progressive, congenital or acquired anomalies of the central nervous system. He differentiated childhood schizophrenia from infantile autism as the former was a psychotic disorder with a deteriorating course. Kanner recognized clinical antecedents of autism (3,6) in the works of Sukhareva (which he also noted being spelled Ssucharewa) in Russia, Lutz and Tramer in Switzerland, and Despert in the USA but despite similarities he distinguished the aforementioned as being different conditions: “It was deemed essential for the diagnosis in both groups that a period of relative normalcy had preceded the beginning of the illness.” (3)

Kanner did not need to plagiarize Asperger (aka Silberman’s mentor). According to his clinical criteria, Asperger and infantile autism were different disorders in the same way he differentiated it from childhood schizophrenia. The fact that George Frankl was one of his clinicians was never hidden and recognized in his publication: “[in reference to Donald, Kanner’s first patient] My assistants, Drs. Eugenia Cameron and George Frankl, spent much time with him and kept detailed notes.” (5) He did approach Asperger’s contribution in public. Recently, while on my trip to Russia, Adam Feinstein provided a citation from Kanner’s work stating that according to the clinical criteria provided by himself and Asperger, they were talking about different conditions. It must be remembered that in 1938 while Asperger was giving his speech describing his patients to Nazi sympathizers, Kanner was already receiving Donald and others to his clinic and George Frankl was already his assistant. In regards to those who attribute Kanner’s “mysterious” 1938 reference in his report as acknowledging Asperger’s presentation: “Recent letters to JADD have described this reference as “mysterious” and speculated it refers to papers published that year by Despert or Asperger. In fact, as Kanner goes on to state, 1938 is when he examined the first child in his case series. An exchange of letters with Despert and later writing by Kanner also point to the originality of his observations.” (9)

Kanner did not restrict his praise for Bernard Rimland. He cited Rimland in his scientific work as an authority in regards to childhood schizophrenia. In his acceptance of the Stanley R. Dean Research Award and its corresponding publication (3) rather than citing the voluminous literature on infantile autism and childhood schizophrenia, he provided three main references, one of them being Rimland’s book Infantile Autism. This could have been the highest academic praise Kanner could offer to a layperson. In terms of portraying Kanner as someone who only gave carefully crafted praise, enough to satisfy his own needs, maybe Silberman should take a look in the mirror. If there is a put down on the work of Bernard Rimland it is the one offered by Silberman himself.

Many of the ideas in Silberman’s book can be refuted in Kanner’s publications. Either he was not aware of them and did a poor job of investigational journalism or he chose to ignore them in order to provide a biased account on Neurodiversity. What would have happened if Kanner had not written down his thoughts? Would Silberman’s attempt at character assassination succeeded? Who is the villain in the story Kanner, Asperger, or Silberman?

Having some knowledge on the subject, I thought that Neurotribes was a painful read. Silberman’s arguments are constructed as a house of straws. It is very naïve to accept accounts of Asperger’s achievements and political views coming from biased parties (i.e., his daughter). The well-publicized story that Nazis came to arrest him twice and he was only saved by the intervention of his supervisor was his own assertion. I have to wonder how many people in the postwar era tried to distance themselves from the Nazis with a similar story. Hopefully this was not the case. However, Silberman shows a similar naïveté when discussing the rising prevalence rates of autism. I was not aware that Mr. Silberman’s authority was to the standard where he could readily dismiss the data stemming from the CDC studies just by hand waving. There are also many other studies on the subject. According to one study, diagnostic broadening or substitution may account for a significant portion (but still only one-quarter) of the observed increase in prevalence caseloads. (10) Irva Hertz-Picciotto along with her colleague Lora Delwiche conducted the first quantitative analysis “of how much of the increase in diagnosed cases in California can be explained by artifacts (i.e., changes in diagnostic criteria, earlier age at diagnosis and inclusion of milder cases). [They] used California state data that provided statistics over many years and found that the numbers simply do not add up. In other words, the actual increase has been far larger than these artifacts could have produced. Combining [their] results with those of another research team, it appears that about half of the increase in diagnoses in California is due to changes in diagnostic criteria or practices. These results left about a three-fold increase unexplained as of 2007. And autism diagnoses in California have continued to rise both in areas with low rates and in areas with high rates.” (11) There is a lot of literature counter to Silberman’s assertions but right now this blog has gone for too long.

We all believe in accommodations. Some of us fight for them while others only talk about them. Personally I believe that research efforts by the federal government and private funding organizations have been misguided. Research should be prioritized as to those efforts that can create a difference in patient’s lives now rather than later. Still, I support research and attempts at improving treatment options. Opinions like those in Neurotribes may only serve to provide a negative impact on these efforts.

References
1) Kanner L. The integrative aspects of ability. Acta Paedopsychiatrica 38(5):134-44, 1971.
2) Kanner L. Infantile autism revisited Psychiatry Digest 29(2):17-28, 1968
3) Kanner L. Infantile autism and the schizophrenias. Behavioral Science 10(4)412-420, 1965.
4) Kanner L. Children in state hospitals. American Journal of Psychiatry 121:925-927, 1965.
5) Kanner L. The birth of early infantile autism. Journal of Autism and Childhood Schizophrenia 3(2):93-95, 1973.
6) Kanner L Childhood psychosis: a historical overview. Journal of Autism and Childhood Schizophrenia 1(1): 14-19, 1971.
7) Kanner L. Editorial: Retrospect and Prospect. Journal of Autism and Childhood Schizophrenia 1(4):453-459, 1971.
8) Kanner L, Rodriguez A, Ashenden B. How far can autistic children fo in matters of social adaptation? Journal of Autism and Childhood Schizophrenia 2(1):9-33, 1972.
9) Olmsted D, Blaxill M. Leo Kanner’s mention of 1938 in his report on autism refers to his first patient. J Autism Dev Dis Aug 1 [EPub ahead of time]
10) King M, Bearman P. Diagnostic change and the increased prevalence of autism. Int J Epidemio; 38(5):1224-1234, 2009.
11) Irva Hertz-Picciotto. Commentary on the LA Times series on autism http://blog.autismspeaks.org/tag/irva-hertz-picciotto/

See also:
Kanner L. In Defense of Mothers. Mead Dood publisher, 2nd edition, 1941.

3 responses to “Neurotribe or Diatribe

  1. We, the mothers of dyslexic kids, were also being criticized as being refrigerator mothers or as being a computer engineer, we had tentency.
    I totally agree that these brain conditions have been increased in the last decades regardless of mother’s will or abilities.
    Best,

    Like

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