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.
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/
Kanner L. In Defense of Mothers. Mead Dood publisher, 2nd edition, 1941.
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In your detailed analysis you neglected to mention the fact that Silberman made Kanner’s patients to be lower functioning even though both Donald and Fredrick held down jobs and donald graduated college and would be considered high functioning by today’s standards. Also, there was Silberman’s unsubstantiated claim that Kanner excluded individuals with seizure disorders in his original description, even though two of the eleven cases, John and Elaine had epilepsy.
I had jotted down many inaccuracies on SIlberman’s book but unfortunately misplaced the same on my way back home from Russia. This is what made it a painful read, knowing the small mistakes here and there, e.g., that Bernald Rimland spoke of vitamin B6 (not B12), or that Steve Edelson was raised in California not Oregon, etc. I am hoping that what I wrote would help correct the negative impression on Kanner. Thank you for your comment!
I shared this on facebook. Thanks for blogging about this.
You have out-researched Silberman – no easy task I would have thought, after reading NeuroTribes. Clearly there is much more to Leo Kanner and his observations of autism than Silberman wanted to know. Or wanted us to know.
I especially value these quotes from Kanner describing autism present at birth, which obviously can’t be caused by parental indifference or worse, as he points out:
“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. . . . We must assume that these children come into the world with an innate inability to form the usual, biologically-provided affective contact with people . . . . 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.”
These children are isolated, in their own world, from birth. (Did Kanner ever see regression?) Silberman would say autism present at birth confirms the genetic basis of autism – but it just as easily implicates a gestational cause. Equally biased is Silberman’s failure to acknowledge the autism epidemic in this country, as you point out. This review of NeuroTribes deserves immediate publication in a journal of psychology/psychiatry.
I appreciate that you devote your time to autism research, but I find that your discussions of neurodiversity are, well, lacking. You may someday want to put out an actual discussion of what you think neurodiversity is, so that one could discuss with you your misconceptions.
Instead you do what many do, you make incorrect remarks based as though your concept is accurate and move on.
Simple example–your claim “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”
I guess I am not a part of the neurodiversity movement as I don’t make claims about historical figures. Ironically, the historical figures in Mr. Silberman’s book were deemed to be likely autistic (you are aware that Asperger syndrome no longer exists, I am sure) by a prominent neurologist.
The primary focus of the book is similar to that of the neurodiversity movement itself–civil rights. But you don’t discuss that at all.
You have in the past questioned whether people “riddled with seizures” and having other challenges would support the neurodiversity movement. The most casual of investigations would have led you to vocal members of the neurodiversity movement with uncontrolled epilepsy, for one example. Also, I find it interesting that most critics of the book act as though chapter 2 doesn’t exist–a chapter about a young man who has very significant support needs.
You go to great lengths about the discussion of Kanner, but to one who has read the book, your arguments fall flat. Were you aware before the book that there was a direct connection between Asperger’s lab and Kanner’s? Kanner stated that there was a George Frankl who worked in his laboratory, but it not that this was the same person who worked in Apserger’s laboratory. Further, it is clearly shown in the book how Kanner helped to propogate the myth that the discoveries were independent.
Frankl was part of the clinical team that worked with the first autistics that Kanner’s team saw. The same Frankl who had worked with autistics in Apserger’s team. I ask you, how would you feel if a researcher in your group went to another team and that PI claimed to have made your discoveries independent of you? Let’s leave out that this assertion was supported by articles written by the father of one of Kanner’s patients–said fact was not disclosed.
If you wish to rely so heavily on the California DDS data to claim that there is a true rise in autism, I’ll ask you to check my blog in the next few days. I’ve got an article going up looking at recent data. I would be very interested in your response to how/why intellectual disability has dropped dramatically in the past 2 decades, at least as measured by the CDDS client count.
Also, as a researcher and instructor, I would expect you to not fall for the same logical fallacy that so many do when discussing Hertz-Picciotto and Delwiche. It is one thing to say that they found some social influences which have contributed to the rise in autism counts. It is another–and by that I mean incorrect–thing to say that the claim that they claimed to have found the only social influences which could be at play. Consider that after their paper Peter Bearman’s group quantified how diagnostic accretion played a major role.
It would be like me claiming that your work shows that there is only one difference in the brains of autistics and there can be none other, and claiming you as the expert in that assertion.
Getting back to Kanner, Silberman acknowledges that Kanner changed his view in later years. He distanced himself from the “refrigerator mother” theory that Bettleheim took on. But that does not negate the fact that Kanner originated the idea. And that was a very damaging, very wrong approach.
I would be interested in what you find in this description of the neurodiversity movement that is incorrect. It is very different from the concept you appear to have.
“Neurodiversity is the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species.”
And, more importantly
“The Neurodiversity Movement is a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent.”
In previous articles, you seem to have taken on the false idea that the neurodiversity movement is focused on so called “high functioning” autistics. Again, I draw your attention to chapter 2 in Silberman’s book, and the writings of Shannon des Roches Rosa (whose son is the topic of chapter 2). I would also ask you to listen to comments made yesterday at the IACC meeting by ASAN’s Sam Crane. For example, her comments about ASAN representing a broad swath of the autistic population and, further, that ASAN was the one organization to advocate for a high-support autistic to be included on the IACC.
There is also the myth that the neurodiversity movement is “anti cure”. I’ve been accused of this multiple times. I’ve asked people to back up their claims and show where any effort I did while on the IACC could be deemed “anti cure”. I ask, and then those who make the accusations go silent. There is none. You are also I am sure well aware of John Robison’s upcoming book on transcranial magnetic stimulation. Also, you can find that TMS is mentioned in the treatment section of one of the IACC updates. That chapter of that update was written primarily by Noah Britton. I don’t know if he put that in, but it’s in the update.
I don’t really discuss the cure debate much–as there is none at present. There is none in the works. Those who promote fake cures are of course angry with the neurodiversity movement–because of the civil rights stance. It is a violation of a disabled child’s civil rights to be subjected to fake, and often abusive, “cures”. It also does no one any good to diminish the value of an autistic (e.g. “what do I have to lose”, a phrase I’ve read many times written by parents justifying their choice of alternative medicine).
So, before I join you in making this a diatribe (because, to be frank, I find your title to be ironic), I will sign off with this–
I write this because I expect better of you. You make sophomoric mistakes in your discussions both of the neurodiversity movement and of Silberman’s book.
Thank you for the comments. As you may know I follow your blog and admire how much of your personal time you devote to the same. Occasionally I have been amazed by the detective work in some of your posts.
I do work with autistic individuals and have personal experience of my own stemming from my grandson. Patients coming to me for clinical trials are extremely handicapped and in need of help. Because I recognize their needs I do believe in better accommodations for disabled individuals and in re-assessing our research efforts.I believe that a lot of time, money and effort have been wasted in supporting genetics and animal model studies. I also write against fake cures and speak to parents right in front of their booths at different congresses (for which I am no longer invited). I agree wholeheartedly with John Robison’s efforts as his perspective includes research and treatment. It would be wonderful if Neurodiversity had evolved to this. As a civil rights movement it would be silly to presume that people, primarily parents like myself, would oppose the same. However, we can’t turn a blind eye to the fact that many members of the Neurodiversity movement do not share this point of view. I can provide neuropathological series showing defects that can’t be explained as normal variabilities, but it seems to be invisible to Neurodiversity proponents. As John has said, it may be that there has been no set of rules for people to follow or even a definition as to what Neurodiversity may be. Maybe Mr Silberman’s efforts were supposed to fill this gap. I believe it is a good but biased read. The length of my post was not meant as a diatribe but rather as a necessary way of conveying whole quotes from Kanner’s articles that would serve to negate Mr. Silberman’s arguments. Either he was uniformed or was extremely biased in portraying his story. Kanner did a lot of good for individuals with autism and in many ways his though process foretold many of the problems we are now facing. I do not believe he had a need to plagiarize Asperger as per clinical description they were talking about different conditions. He always maintained that patients with autism were born with the condition. He used the same criteria to differentiate the condition from Childhood schizophrenia and gave credit to other people as having provided similar descriptions before him albeit having a period of normal development. Including Asperger would have been adding one more person to the list. I also believe that Silberman’s attitude at negating a rise in prevalence was naive as it did not broach studies specifically studying the possibility of diagnostic broadening or substitution.
Thank you again for your comments. I do not believe that in the main points, in trying to do something positive for our children, we are that far apart.
” I agree wholeheartedly with John Robison’s efforts as his perspective includes research and treatment. It would be wonderful if Neurodiversity had evolved to this. ”
Odd statement, given that John Robison is the William And Mary Neurodiversity Scholar in Residence.
So you seem to have a false dichotomy–claiming that John’s approach is not part of the neurodiversity movement.
I even find the phrase “evolved” to be interesting in context, as John is a more recent voice within the movement.
“Thank you again for your comments. I do not believe that in the main points, in trying to do something positive for our children, we are that far apart.”
This is very similar to what I said to John at the IMFAR meeting in San Diego, where I met him. John started out quite skeptical of me as I was writing for a neurodiversity aligned blog. After a few days together it was clear that we agreed on more than we disagreed upon. And I said as much to him on our parting.
And, as we now see, John is now very much a neurodiversity movement advocate.
Manuel, I think the neurodiversity movement has something very much in common with Islam. One minute we are being told that all Muslims are not the same, they are not all terrorists etc. But next minute we are being told there are a billion of “them” and “they” are the fastest-growing religion and so on. The two entities have in common this lack of a remotely clear universally-accepted definition. And thereby all sorts of nonsense get rationalised away.
I have corresponded with “Sullivan” in the past, nearly a decade ago, and I consider him a tragic figure. He is clearly stating what he honestly believes and puts a lot of conscientious effort into researching. But as I see it he is blinded by his biasing preconceptions, which are too great for anyone to break through. He rightly perceives errors in some equally fanatical ideas on AoA but he fails to grasp that just because A is incorrect it doesn’t follow that B is therefore correct. At one point he claimed that stating (irrelevant) facts about a person did not constitute ad hominem argument. And then blocked me from replying. Since when I haven’t darked his blog’s door.
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And, I should have said this first–
I appreciate you taking the time to respond to me. I realize that you do sometimes read LBRB and I hoped that would mean that you could appreciate that my direct response to you was not a challenge or meant to be disrespectful.
I consider John a personal friend now for many years. He is coming to visit me in the next few months. We seem to disagree, if anything, as to the degree to which some Neurodiversity proponents bash research and treatment. Maybe they are the more radical proponents.
Having a child wheelchair bound and now practicing within a Department of Pediatrics I couldn’t be more pro-accommodations and pro-acceptance. Most of the patients I see are severely handicapped. When somebody tells me that I should not treat my grandson or a patient for seizures or when somebody says that I am practicing genocide by giving TMS, I draw the line. However, I think we are all in this together and basically want whatever is best for our children.
As an aside a lot of my research was cited as a foundation for Neurodiversity, at least in regards to dyslexia (The Dyslexic Advantage).
Matt, I am humbled. Thank you for your kind words.
There is a very strong residual fight from the days of the very vocal cure movement. Many autistics were very unhappy with the way that cures were sold. As you have seen people say things that are on the extreme, the cure movement had some statements as well.
My own personal opinion is that a lot of effort is wasted discussing cures–when none exists or is even in the pipeline. Treatments are something else and should be treated as being different than the search for a cure.
Even with that said, neurodiversity is about civil rights. I rarely talk to people about the cure debate. There’s just too much else to focus on. But I know that when it has come up and people have talked about those autistics seeking a cure, people generally say, “I don’t want a cure, but I support that person’s choice to seek one”.
As I’ve written elsewhere, I’d like to see a world where a person could be valued and accepted equally if autistic or if given this hypothetical cure. Then the choice would be a free one. And, more to the point, it would be a better world than the one we have.
John is a kick. I wish I had more time to interact with him when we both served on the IACC. I tended to fly overnight (red eye), go to the meeting and fly back that night. I do not like to be away from my family. And there were meetings where I had to call in (and one, only one, where I just couldn’t make it). I am in California, the meetings were in DC. I would literally be on the ground in DC for about 12 hours. So, not a lot of time to connect.
We did spend a very nice breakfast before the last meeting. He told me he wanted to talk to someone who understood magnetism. I let him know that my Ph.D. is in magnetism and I’ve been in the field now for 30 years. I told him some of my reservations about TMS, such as the fact that magnetic fields are inherently non local and I was not comfortable with the group here in California charging very high rates for what is still an experimental treatment. But in the end we ended up talking about his work with electronics and how I got the reputation as a kid as someone who could fix tape recorders (and thus ended up with a huge collection of them as people gave them to me). And that was fun.
We also had a nice dinner with Nancy Minshew after one meeting. Both the autism and non autism conversations were great.
We share many opinions. In my case I believe that a lot of time and money has been wasted in misguided research projects primarily in regards to genetics and animal models. Also most people work in silos and won’t do research outside their comfort zones. Funding usually goes to the larger universities who get away with anything during grant proposals. I was thoroughly disappointed at the experience when I was the chairman of the Brain Developmental Study Section that reviewed most of the grant proposal for autism. A lot more can be done.
I am also an electronic buff myself which is, in part why John and I take well together. I built my first Heathkit oscilloscope when I was 16 years and had an electronic lab back then. Although I wanted to be an EE my career was diverted into chemistry and then medicine. Now in my old age I am coming back to electronics. Waiting now to receive my latest eBay find (a lot of Dale resistors).
Nancy has been my friend for at east 20 or 25 years. We have the same glimpse into autism as we are both neurologists. We enjoyed a nice breakfast at IMFAR along Margaret Bauman, Steve Edelson and Alan Packer. In part, I go to IMFAR to see old friends. That is the only way we get together.
I’ve been meaning to come back here and continue the discussion.
Then I saw you allied yourself with the Age of Autism blog.
I just saw the link posted by the Age of Autism. They posted a small excerpt and referred people to my blog. I would not read much more into it. Thanks for bringing it to my attention.
Thank you for your thorough review of Steve Silberman’s book Neurotribes, which I found via the link from Age of Autism. I have borrowed the eBook twice from the library, and have read much of it. The advantage of eBooks is being able to search for things, like echolalia, aphasia, etc.
Language impairment is the most disabling handicap of autistic children, and clearly defines autism as a neurological disorder. Repetitive (choreo-athetoid) movements are also clear signs of neurological injury.
My son is 53 years old, and I have been reading everything I can find on autism for 50+ years. I have spent hours down in the old journals stacks of the Countway Library at Harvard, looking specifically for descriptions of autism that predate Kanner and Rimland.
Silberman did not like Martin Barr’s descriptions of feeble-mindedness etc., but Barr’s (1898) description of echolalic speech in one patient, and its uniqueness at that time is important. I posted Barr’s paper on my website at:
Fifteen+ years ago I put up my website conradsimon.org on research relevant to the brain disorder in autism. I still believe injury of the auditory system (by all of autism’s many causes) should be investigated. Neurotribes promotes ongoing ignorance as an ideal.
Patience (Eileen Nicole) Simon
aka Patience Cody
Thank you for leaving a comment. I was not been aware of the link from the Age of Autism. I have been able to examine about 400 audiograms collected by Steve Edelson and was in the process of studying them statistically when I lost my statistician. Visually they looked abnormal. Instead of the flat response in neurotypicals, there were more peaks and valleys. I imagine that that the sensory abnormalities observed in autism (hyper and hypo sensitivities) are manifested by the auditory and other sensory systems.
As an aside I congratulate you for being a blogging pioneer. I started mine only a couple of years ago.
Wow, yes!!! I looked up Edelson in PubMed, and found an article he co-authored on the nucleus tractus solitarius (NTS) and its vulnerability to toxic and hypoxic impairment.
I have long cited the finding by WF Windle (1969) of auditory system damage caused by asphyxia at birth. Relay nuclei in the brainstem auditory pathway are vulnerable to toxic insult as well as asphyxia, because they have higher blood flow and metabolism than other areas of the brain (revealed in research with radioactive tracers).
The auditory system is visibly vulnerable, but what about much smaller centers of autonomic control; control of respiration, heart rate, and intestinal peristalsis? These centers must be even more metabolically active, but too small to be revealed using radioactive tracers.
I am putting together comments to submit for the next IACC meeting, and am asking for discussion of how autonomic control in autism might be disrupted by toxic or hypoxic insults, and will cite the research on the NTS. I see more in PubMed too.
aka Patience (Eileen Nicole) Simon
Steve also funded another one, a postmortem study for doing stereology in different brainstem nuclei. The study could never be finished for lack of proper material.
As an aside we have done a good number of studies regarding autonomic measures in autism. This started way before autonomic dysfunction became popular in autism.
Thanks for your comment.
Also as an aside, Steve had at least one of the first articles trying to establish the efficacy of auditory integration therapy.
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PLEASE TAKE A LOOK AT THIS VIDEO
Haley vs Offit: A Virtual Debate About Vaccines, The Greatest Medical Controversy of Our Time.
Media star and forced vaccine proponent, Dr. Paul Offit, MD has his claims rebutted by renowned biochemist, Dr. Boyd Haley, PhD.
Thank you for the comment. I respect both of the named people.
Re your respect for Dr Offit, are you aware he was sued for concocting an entirely fictional interview in his false prophets book and also now been exposed as falsely accusing a journalist of sending nasty emails and lying (ocregister.com, 2011)? Also his book makes interestingly misleading use of what I call “shy citations”, as documented here: http://www.autismcauses.info/2010/10/autisms-false-prophets-autisms-false.html
And there in that video he expresses his delusion (denialism?) that the autism increase hasn’t happened.
Meanwhile I also have some different ideas from BH’s about the cause of the increase, but they are in an altogether more modest class.
No. I was not aware.Is there a reference to read?
With respect to the question of hypoxia Years ago when my son was diagnosed I read some articles on the subject of retinopathy of prematurity, which he had and there seem to be some association between swings hypo – hyperoxia and autism
Extreme prematurity is associated with a higher risk for expressing the autism phenotype. Many times damage to the brain in extreme prematurity is a hypoxic insult that damages the white matter surrounding the ventricles. Other cases may also have hemorrhages in the germinal matrix.
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Thank you for this review. I am working my way through Neurotribes and finding it somewhat meandering and unclear. I have an autistic grandson now 26 years old. He went through mainstream primary and highschool with limited success and was diagnosed at age 6. His behaviour has become more bizarre in recent years exacerbated by alcohol use. He has been raised by his father. My daughter, his mother, has had very little contact or influence in his upbringing since divorcing her husband. Silberman appears to claim that all autistic people have talents that help them cope in the world and some are downright geniuses. Sadly there is no indication of this in my grandson. He is unable to live independently and I am sure there are many more like him than otherwise. I am so glad I found your review as I have concerns about the way autism is presented by Silberman.
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Certain books quickly become “bestsellers” as has Silberman’s. This isnt’ because they are particularly truthful or well-written or useful, but because someone has decided to majorly fund a marketing operation. Once a book has been carefully set up to reach the “bestseller” quotient for a week or two, it then has Matthew Effect momentum which carries it forward by default for months afterwards rather than having to swim on the basis of its own (non?)-virtues.
Just imagine how your book would stand out if a million bucks were given to its promotion. And yet that million bucks is piddling peanuts to certain corporations in the “health” industry.l
I see a hidden agenda behind the sudden prominence of Neurotribes.
(1) Certain people believe that vaccines have caused a huge increase of autism. (Actually there has been a huge increase but not caused by vaccines according to my own evidence: http://www.pseudoexpertise.com .)
(2) The vaccine industry is a megabillions scam and doesn’t exactly welcome the vax>>autism-epidemic theory, and would like to debunk it whatever way.
(3) Meanwhile, a substantial number of highly-vocal individuals have identified themselves as “autistic” (or related terms) even though they are not particularly disabled. These autism pride neurodiversity people are insistent, despite evidence, that (all) autism is not a problem but rather a gift of superiority. They consequently “reason” that “therefore” this non-problem cannot have been caused by a cause of a problem, so “therefore” there can’t be anything causing an autism increase. And “therefore” vaccines can’t have caused it and “therefore” there hasn’t been an increase anyway.
(4) This Neurotrash book conveniently presents as the Bible of this particular quazi-religion. And consequently it has been found favourable to the vaccine-pushers and so they have given it a million or two bucks to get flying. It has then been promoted to the already existing market of autism pride groups.
Meanwhile the good news is that it is not a work of careful honest scholarship and that shows. It has come under damning criticism. But worse(better!), judging from some comments on amazon it appears to be very poorly written and edited. Such deficiencies do eventually wear down the credibility of a defective book. Many purchasers will never finish reading it let alone telling others it is worthwhile. The neuropride fanatics will still be giving it fanatical reviews in 5 yrs time but I doubt many others will be hailing it any longer as anything like a useful guide to the field. (And that’s even if it isn’t completely shot down by my own book http://www.pseudoexpertise.com.)
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