Towards a neurodiverse world

https://openclipart.org/detail/229515/multicolored-jigsaw-puzzle-pieces

Steve Silberman: NeuroTribes:
the legacy of autism and how to think smarter
about people who think differently
Foreword by Oliver Sacks
Allen & Unwin 2016 (2015)

I have to admit that this wasn’t quite what I was expected when I began it. I was looking forward to an updated discussion of what autism actually is and how people not actually on the spectrum can learn to think about those who are on it. Instead I found I was reading a 500-page doorstop of a book which provided complex case histories and followed a rigid but discursive timeline down from the 18th century. Much of the time I felt that the promises contained in the title and subtitle (particularly on describing autism’s ‘legacy’) and a confused impression about the book’s targeted audience (was it the general public or those directly affected by autism?) were being lost in a catalogue of contradictory opinions, varying terminology and distressing detail.

But then I realised that there was method in this apparent madness. By examining the general public’s confused reactions to autism’s manifestations over the centuries and the conflicting diagnoses and prognoses offered when individuals exhibited the condition Silberman was able to build up a picture of what autism was not; how those with the condition presented in a multiplicity of ways; and how — after many years seen as passive victims who might or might not be ‘cured’ — a significant number of those on the spectrum have started to self-advocate and be proactive in proclaiming its potential.

Silberman began by introducing us to two polymaths, recognisable to us as typifying the classic absent-minded professor: Henry Cavendish and Paul Dirac. Prodigiously innovative and intelligent but lacking most of the social graces, these two — the first the discoverer of hydrogen and the second a winner of the Nobel Prize for Physics — managed to survive and thrive despite their personal eccentricities. As Silberman’s account progresses, though, it becomes crystal-clear that many others fail even to thrive, much less to survive. These are the ‘incurables’, the ‘feeble-minded’, those identified as ‘cretins’ by society at large because they didn’t behave or respond in a ‘neurotypical’ or socially acceptable way.

Instead of beginning with definitions Silberman chooses to reveal aspects of autism gradually by describing — largely chronologically — the history of how those with the condition were diagnosed and treated. It soon emerges that there were some common factors that youngsters displayed: principally these were difficulties with social communication, social interaction and social imagination. (I’ve using the categories given by the National Autistic Society of Great Britain; Silberman rarely puts it so succinctly.) In other words they failed to understand or use the social conventions that society expected. In addition to these ‘negative’ features they often displayed a tendency towards routines and repetitive behaviours, sensory sensitivity, and special interests that appeared extreme to many, along with learning disabilities that ranged from severe to unconventional — at least they appeared so to neurotypicals: those with a typical neurology or without a defined neurological disorder.

All through NeuroTribes one gets a view not just of individuals on the spectrum but also of other interested parties: psychologists and psychiatrists, some extremely sensitive to their charges, others with rigid, even insensitive, attitudes to those on the spectrum, often with a professional status to defend; there are the parents, often at their wit’s end, desperately seeking professional assistance or setting up self-help groups with other parents in the same position; and there is the general public, prey to scaremongering and other populist theories, often prepared to believe that those who exhibit differences are somehow threats to society at large or the future of the human race.

Silberman introduces us to prime movers in the public perception of the condition (though some don’t achieve full acknowledgement of their contribution till much later). These key individuals include Hans Asberger working in Vienna between the wars, whose diagnosis of the syndrome that bears his name wasn’t acknowledged till long after his death; Georg Frankl, a colleague of Asberger who favoured Asperger’s term of ‘autistic psychopathy’; Leo Kanner, a Ukrainian Jew who established himself as an authority on what he called ‘early infantile autism’ but who long refused to recognise the condition in adults; psychiatrist Lauretta Bender who diagnosed ‘early-onset schizophrenia’ in young patients and in the mid-20th century established helpful criteria for noting ‘schizophrenic syndrome in childhood’; and Lorna Wing who devised the term ‘autistic continuum’ (later changed to ‘spectrum’) to describe the dimensional character of the condition, and who was responsible for recognising Asperger’s pioneering work by applying the term Asperger Syndrome to those on the spectrum who exhibited certain traits.

The relatively short history of autism that Silberman gives at such length is sadly not one characterised as a continuously upward graph of improvement. There were the eugenics and forcible sterilisation movements of the early 20th century which found such fertile soil in the US and later in Germany. I found the descriptions of what went on in Nazi Germany where those on the spectrum were concerned particularly distressing, as were the cruel practices of Ole Ivar Lovass and his colleagues in 1970s USA in their development of Applied Behaviour Analysis (ABA), which treated patients as though they needed to be trained as recalcitrant animals. And the sheer nonsense of Andrew Wakefield’s theories on how the MMR vaccine supposedly contributed to an ‘epidemic’ of autism, and the desperate hopes of those who believe autism can be cured — it all makes for uncomfortable reading.

After eleven long chapters and 500-plus pages Silberman finally gets round to a definition of sorts of what autism is: “not a single unified entity but a cluster of underlying conditions [that] produce a distinctive constellation of behavior and needs that manifests in different ways at various stages of an individual’s development.” This is not a definition that satisfies those seeking simplistic solutions, nor is the conclusion that “adequately addressing these needs requires a lifetime of support from parents, educators, and the community, as Asperger predicted back in 1938.” Those who feel awkward about difference (pretty much all of us, to some degree or another) may be flustered to learn that not all on the spectrum exhibit as obviously as the character in Rain Man (the film which most brought autism into public consciousness) and that the condition is not as rare as has been assumed until recently.

Here are the two positive messages that I finally got from NeuroTribes. First, that public perceptions and attitudes are being changed by those on the spectrum self-advocating instead of being regarded as somehow passive victims of nature and/or nurture. Secondly, that the underlying strength of those with the condition is that not only do they think differently from the neurotypical population but that aspects of creativity and innovation and imagination are more pronounced in many on the spectrum, and that this can be shown to have positive effects on society and the advance of science and technology. But that is an argument that Silberman’s study only hints at.

• I’m very grateful to Flo Neville at https://flojoeasydetox.wordpress.com/ for passing on a copy of this to me