Leonard Janke's Reviews > NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

Past the Worst Misunderstanding but Not Yet at Much Understanding?

Overall Rating: 3.25/5.0

Steve Silberman's Neurotribes: The Legacy of Autism and the Future of Neurodiversity deals with the history of the understanding autism and the many controversies it has entailed. Overall, a sense emerges that we are, thankfully, likely past the worst misunderstandings but that, unfortunately, we are only starting to understand what it is.  

Overview of Contents

Silberman's primary focus in this book is on history. Although it is unsurprising that Hans Asperger is a prominent figure, what is likely more surprising is just how good and humane an understanding of autism the Vienna Children's Clinic had before the Second World War. As the book recounts, much of this knowledge was lost with the rise of Nazism, however. Silberman describes how, although researchers from Vienna found their way to America after the war, the knowledge they carried with them was mostly lost for multiple decades. This was due to a psychoanalytic theory that autism was "childhood schizophrenia," caused primarily by "refrigerator mothers" carrying the day instead. 

Unfortunately, for those with and those caring for those with autism, the demise of the notion of child schizophrenia was quickly replaced by what would turn out to be misguided searches to find cures for autism. Here, the focus was on conjectures regarding causes in the physical environment, people's diets, and what was going on in their guts.

Silberman then recounts the history of the notion that vaccines were responsible for a significant number of autism cases and how this idea was debunked. Although this book was written before 2020, it is interesting and quite perplexing to note another experience in recent history where vaccines have inspired such fear and become the targets of such scapegoating.

With the worst explanations hopefully behind us, although only shortly before this book was written, we are, hopefully, at a point where we can finally begin to understand what autism really is. Unfortunately, the final chapters show that we are not far along in this regard. For example, Silberman writes how attempts to isolate genetic factors contributing to autism have proved far less fruitful than hoped. 

The Book's Strengths

The book's greatest strength is the balanced, down-to-earth perspective on autism that it provides. Although a significant portion of the book is devoted to discussing those with or who are conjectured to have had autism but who also had "superpowers," for example, physicists Henry Cavendish and Paul Dirac, along with the real-life "autistic savants" who inspired the movie Rain Man, the book is careful to echo Asperger's observation that, overall, in most cases, the detriments of being autistic outweigh the benefits. In some cases, there are few benefits at all. Early on in the book, a more typical case is presented, where the overall impairments are real, and how the family manages is presented. 

Another of the book's strengths is that it does not shy away from discussing some of the more troubling aspects of the history of autism. Even more than expected, there are some rather shocking and deeply disturbing aspects of the Nazis' eugenic program. For instance, one rationale for the eugenics program was a survey sent to parents of those with severe mental illnesses questioning when they thought euthanasia would be justified. The interpretation, later presented to Hitler, was that some parents seemed to secretly wish to be freed of their burden but wanted to be kept in the dark (e.g., there was a terrible tragedy at the hospital…) to maintain their consciences. Also distributing is the description of how the euthanasia bureaucracy operated. There was a committee in Berlin that rarely had immediate contact with those whose lives were at stake or even those caring for them. Instead, there were some forms where IQ was the primary factor in deciding who would or would not be allowed to live. 

Although, unsurprisingly, no other part of the book is quite as dramatic as discussing the Nazi era, the book, nevertheless, generally, moves along at a good pace. 

The Book's Weaknesses

Although generally engaging, the book seemed more repetitive and, hence, longer than needed. Contributing to this was the recounting of the personal lives of the autism researchers. In the case of Kanner, who introduced the notion of childhood schizophrenia, this did seem warranted since it showed how his sense of grandiosity contributed to a setback in understanding. For others, however, these details could easily have been cut. 

Although the book makes clear that Kanner's theories were, without a doubt, a setback, Silberman also seems too completely dismissive of them. Although parents do not cause autism, there still might be a kernel of truth in Kanner's notion that if parents with autistic traits, specifically lacking much desire to socialize, are not careful, this could be less than ideal for their children.

However, the biggest weakness I found with the book was that the focus is more on historical narration than on detailing what we do and do not know about autism. This is likely because the book was intended to reach a broad audience, so it avoided diving that deeply into technical details. Although this is good for promoting empathy for those with autism and their families, there is a cost in terms of understanding. For example, I would have liked to see some quantification of how severe impairment with autism is. Is it a bell curve? Skewed toward greater impairment? Flat? Is there a notion of a "middle"? 

Along similar lines, it would be interesting to provide specific examples of how the same autistic traits, e.g., systematizing, can be beneficial at one level of intensity but detrimental and even severely detrimental at another. The lack of technical detail also made it hard to understand how autism can have a strong genetic component, but, at the same time, the search for the genes responsible seems to be coming up nearly empty. 

A Deus Ex Machina?

Going into this book, I knew that autism has a strong genetic component. Reading about the Nazi eugenic program made me think there might be great contemporary relevance. For example, many now believe that abortion should be legal in all circumstances, including for eugenic reasons. Already, we know that eugenics does play a role in abortion decisions. Fetuses who would otherwise go on to develop Down Syndrome are more likely to be aborted. Female fetuses are more likely to be aborted than males. It, thus, seems likely then that if there were a genetic test, those likely to go on to be autistic would be more likely to be aborted. Similarly, the emergence of the Medical Assistance In Dying (MAID) program in Canada makes it clear that, since autism is a spectrum, cases will emerge of those wanting to end their lives where it will not be clear if they can rationally make that decision or not. 

In the case of abortion, the book makes clear, however, that there might be a Deus Ex Machina that saves us from having to determine the correct ethics. Specifically, evidence and theoretical arguments are mounting that it will not be possible to devise genetic tests for autism, thus generally eliminating this possible future reason for abortions.

Conclusion

Silberman provides a balanced, empathetic, grounded, and mostly engaging discussion of the history of the understanding of autism while not shying away from disturbing aspects of the subject. 

At the same time, although there is some discussion of current theories regarding autism, the book's biggest weakness is that it is technically lighter than seems ideal. For example, I would have liked to see more discussion of what evolutionary psychiatrists have come up with regarding autism.

Overall, after reading the book, I did not have a good understanding of what exactly autism is. Yes, in some cases, there is clearly serious dysfunction. Then, it is a disorder with a strong genetic component. Moving along the spectrum, however, it was not clear if we are still dealing with a genetic condition or if it then becomes blurred with a personality type that is not, however, likely to lead to severe impairment in one's children.