The Neurotribes Revolution Changes Everything, writes John Greally.
This book is guaranteed to intimately and extensively change, reorient, inform any reader about autism and autistics in their lives.
Steve Silberman’s autism best-seller is rapidly changing so many people’s thinking in autism and autistic communities simply because it brings together such a wealth of new information to upset and overturn so much of what we all thought as settled about autism and autistics.
It is a very meaty read – 544 pages! – consisting of new and exciting documents, crucial overlooked research, clear cases of serious misinformation, and a thrilling peek into how the Europeans with Dr Hans Asperger went one way:
– psychology, difference, diversity, accommodation, acceptance
and the Americans with Dr Leo Kanner quite another way:
– psychiatry, psychotherapy, disorder, experimentation, awareness.
The implications have for many decades been huge for parents, professionals, policy makers – but mostly for the harshly impacted lives of autistics themselves.
Steve Silberman, a loved and loving neophyte of the late great Oliver Sacks, was a writer for favourite nerd techie magazine ‘Wired’, and his coverage of autism at first was not that positive or well-received as he stumbled into it all haphazardly, inspecting mainly the manifestation of autism in Silicon Valley.
But the subject had an uncanny way of repeatedly cropping up for Steve, and before long he set out to exhaustively study the subject from his non-autistic perspective using his considerable research skills, his amazing background, and many accesses to information not touched on before.
What resulted is not just THE definitive history of autism, but many helpful clues to a way ahead that don’t seek to file autism in the “too hard” basket, or leave it greatly misunderstood or wrongly approached.
Silberman uncovered a critical link (Dr Frankl) that showed the very independent work of both Kanner and Asperger were neither independent nor simultaneous discoveries at all. The impact of the respective disciplines of Kanner (Psychiatry) and Asperger (Psychology) were to have a momentous impact on all that has since followed.
This is what makes the book read – in part – more like a murder mystery unravelling than the usual history genre fare.
Here in New Zealand, a much gentler insightful approach (“work with their strengths”, “different but equal”, “accommodate and allow for”) is followed as a result of powerful links with Hans Asperger, the UK, Australia, Attwood, Larkey, Wing, Frith, Baron-Cohen and the National Autistic Society, than a hard-nosed and rather desperate approach followed by Autism Speaks and ABA proponents emanating from the USA.
Silberman’s discovery of the link between Kanner and Asperger’s seminal work gives a certain contemporary precedence to the work of Hans Asperger, reviving his reputation at a time when the DSM has set aside more than just the word ‘Asperger’, but also quite a few on the spectrum, by redefining Autism as demanding some very limited psychiatric understanding of a ‘daily struggle’ before diagnosis becomes possible now.
Asperger’s view of Autism was vast, broad, “a continuum,” or as we would now say “the spectrum.” It allowed for a breath-taking range of strengths and impairments. Asperger was aware the condition was not rare…once you went looking for it, it came looking for you. Kanner, in keeping with his special interest for very rare discoveries, chose to limit autism to be a rare form of childhood ‘psychosis’ and was later pressured by Freudian psychoanalytic associates to adopt some wildly wrong views as to the cause, such as bad parenting and “refrigerator mothers”. This still sticks with some of the public; this still hurts parents today, and is even spoken aloud.
That is not the only reason why this book is excellent news for parents and anyone journeying with autistics well away from all those sad legacy side-streets that led to nothing but grief and self-blame. It wasn’t just parents who were stigmatized as a result; children were also. Adults were overlooked with no room for over 18s to have some “childhood psychosis”. Abandonment by government and agencies, for the most part, is a searing theme parents well know.
Even to this day, most of the counting of how many autistics there are is based on Kanner-led/Kanner-focused USA statistics from their Centre for Disease Control, not from the UK where they have sensed much earlier how common autism can be, and where talk of ‘epidemics’, ‘tsunami’, ‘increase’ are muted at most. Even autism being under the aegis of an organisation with ‘Disease’ in it’s name like the CDC (above), or ‘Mental Health’ like the DSM (‘The Diagnostic and Statistical Manual of Mental Disorders’) is an impact of the Kanner association once looked at historically. Dominating stuff. And not for the good of millions either.
Canvassed in this book are essential questions such as: Where did this all begin? Why the different approaches? Why do countries approach autism so differently (France and Argentina – ugh, it’s appalling!)? Why so little progress over the years? Why is there so little research actually about care of autistics and how they are faring? Why does it all matter so much? Why do autistic adults get ignored or silenced so often? What misfortunes have befallen autistics and those who care for them? Where was autism miscategorised as a medical, and not largely a social issue? Why does a change in perspective make such a world of difference to an autistic child or adult? Where do we go from here?
This book also puts what so many autistics have said over the years into non-autistic language, explained in a comprehensible way that the angst of the autistic advocate might not convey so well or acceptably. It references beyond much doubt what others might have had difficulties accepting without such a level of deep scholarship. It removes the distraction of all autistic detail and presents a whole big picture that is consistent, contextualised, compelling.
Perhaps only Professor Lorna Wing’s translation and commentary of Hans Asperger’s 1944 paper and the inestimable compendium by Professor Tony Attwood “The Complete Guide to Asperger’s Syndrome” can challenge the hierarchical place of this book in autism’s pantheon of key works.
What Kanner came to accept about autism by the 1970s, Asperger had already revealed – only exclusively in German in 1938. War delays impacted still more on his readership, and translation held all up until 1991. Hans’ endearing quotable comments about autistics are still being discovered by millions today.
Once you consider the future effects of such buried history, of such a buried people, the scope of the tragedy of a lack of light on the work of Hans Asperger is revealed as crushing.
These were courageous men. While Kanner’s heroics are well-known, his escape from unparalleled evil and the 200 he took to safety with him, we must now also respect Asperger’s astonishing imperviousness to great peer pressures, and not just from the medical establishment. “Twice the Gestapo tried to arrest him, only to be shooed away by his boss, who had taken a liking to him, despite being one of the most prominent Nazis in Vienna”.
Neurotribes also covers matters from MMR vaccinations to the rise of the Neurodiversity Movement offering a meticulously researched objective account that not only shatters so many seemingly intractable myths swirling around autism, but does so with inexpressible compassion and the insights of people on the spectrum and their family members. It captures the passion of autism and autistics, discoverers and parents alike so authoritatively. This book writes the history of autism for all books to attempt to follow in future. Can you really afford to be without it? I couldn’t. Thank you to Altogether Autism for making it possible for me to read it.
- The reviewer, John Greally, is an autistic Dad, cofounder of Asperger’s Syndrome New Zealand, and served as Kiwi representative with the peak international body for folk on the spectrum, the Autistic Self-Advocacy Network.