NeuroTribes by Steve Silberman
I can’t praise this book highly enough. Anyone interested in autism, in the history of psychology or psychiatry, and even in the history of medicine should read it.
I have written a long review because I am anxious to ‘sell’ the book.
The author is a science journalist who became aware of what appeared to him to be a rise in the number of autism diagnoses. He was fascinated and decided to research the subject. The result was this book, which charts the history of the recognition and diagnosis of the condition, the problems along the way, and the outlook for the future. He gives in-depth information about the research but matches that with plenty of interesting reading about both the researchers and the children and adults who formed the basis for their work.
I felt at the end – well, actually by about half way through – that I had a much clearer picture of what had happened over the years to produce the current situation in autism research and in the way autistic people and their families are treated by various authorities and for that matter by the general public. As the grandparent of an autistic child I have been very aware that information is patchy, that many people who should know what they are doing and saying don’t, often through no fault of their own, and that the stellar research at the highest levels is not always trickling down to local authorities, schools, doctors, and so on.
Silberman starts with Asperger, whose work with ‘different’ children in Vienna just before and then during the second world war was to some extent informed by his passionate desire to save these children from Nazi attempts to discriminate against anyone who did not conform. He certainly saved a number of children from euthanasia although in the end many of those he saved died in a bombing raid on the institution where they were living. The syndrome he recognised became known as Aspergers and was for many years thought to be different from autism. It was characterised by high intelligence and Asperger’s own assertion that these people were essential to human development went some way towards differentiating them in the minds of the public from individuals with more average skills. Asperger himself managed to escape from Nazi Austria where he would almost certainly have been executed. His work, however, did not escape with him. He was ignored for a long time even though some of his researchers also reached America.
The next part of the book is focussed on Kanner, another refugee from Europe who was an excellent salesman, marketing his own expertise in a climate that had people puzzling over a condition that was thought to be rare and that had attracted very little research, possibly because of the wide variety of ways in which it presented. Kanner managed to sell the idea that the problems faced by those he studied were due to bad or cold parenting, and he initially diagnosed the condition as early-onset schizophrenia. He thus suggested to a public that was beginning to be aware of the condition that families were in some way to blame, and that ‘sufferers’ were in need of mental health treatment, usually institutionalisation. This had a profound effect on the attitudes of teachers, doctors, psychiatrists etc. across the western world, and because of the lack of prior research there was no-one qualified to contradict Kanner. Even Asperger, who was ignored by Kanner, was unable to make any headway because most of his subjects had been ‘high functioning’.
Kanner’s followers, even though some of them deviated from Kanner’s path, continued to regard the condition as something in need of treatment – a disability, or illness, or lack. Some of the treatments Silberman describes are horrific, others well-meaning but inevitably ineffective. All are fascinating as a progress chart through autism research. The author goes into a lot of detail about the lives of some of the people involved and in some instances their autistic children or ‘patients’.
Once it was realised that autism had nothing to do with schizophrenia, things should have improved. To some extent, they did, but by now there was the abyss, in the public mind, between the high functioning Asperger’s individual who might be strange but was an asset to society, and the autistic person who might have communication problems and was in need of special education etc.
Today, the consensus is that there is an autistic spectrum, and individuals can be diagnosed as ASD (autistic spectrum disorder) and be almost anywhere on the spectrum, from the erratic genius to the near-vegetable. Just like ‘neurotypicals’ (the rest of us), autistic people are as different from each other as is possible to imagine. In other words, like all of us, they are each unique.
The work of pioneers like Lorna Wing in UK has done much to alter perceptions at the upper levels of research. Simon Baron-Cohen at Cambridge is currently doing excellent work. Lorna and her work are described in detail by Silberman but Cohen only gets a mention – I think the book went for editing and proofreading well before Cohen’s more recent work became widely known.
Wing was unwilling to accept American ‘knowledge’ about autism for her daughter, and was determined to conduct her own researches.
Another strand of research relied on autistic people themselves. Now that diagnosed individuals were growing older and recognised that they were part of a group, and not just individually ‘strange’ they came together in conferences, study groups and networks of people who were able to add enormously to our understanding of autism. People like Temple Grandin, whose mother resembled Lorna Wing in her determination not to accept any kind of institutionalisation for her child, have been able to articulate for us the way some autistic adults perceive the world.
Then there was the film industry. Silberman explores in depth the making of films like Rain Man and its effect on public consciousness. It was the precursor of works like The Curious Incident of the Dog in the Night-Time (now turned into a stage play) and the brilliant portrayal of a high functioning autistic ‘heroine’ in the Swedish/Danish series The Bridge. Rain Man did perpetuate the idea of the autistic savant – a fairly rare presentation of the condition – but did much to alter attitudes to autism among the general population.
Silberman ends on a positive note (with plenty of recommended further reading) because he shows just how far we have come, how Kanner’s theories held back research and how they have been shown to be a dead end. He praises modern researchers and leaves the reader with hope for the future.
However, he also points to the desperately slow speed at which any modern findings trickle down to the ‘coal face’ where teachers, general practice doctors and nurses, and for that matter parents and their neighbours work. There is a long way to go.
It is quite clear from the book that autism is a condition which makes individuals function quite differently from their neurotypical peers, but has no need of treatment in any psychiatric or medical sense. Of course a child who cannot communicate will benefit from careful work regarding communication, and a child who fears noise or light can be gradually desensitised. But these are on a par with the needs of neurotypical children and are not specific to autism. What is specific is a different way of perceiving the world and the people in it. Until teachers, in particular, understand that and allow for it, autistic children and their families will continue to face problems.
The more books like Silberman’s are read and then recommended to any students going into any work involving children, the more likely we are to have a future in which those problems become rarer.
Please try to get this book from your local library. I would suggest buying it but really, I’d like to see it on library shelves in the hope that the word will spread!!