Towards a neurodiverse world

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

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39 thoughts on “Towards a neurodiverse world

  1. inkbiotic

    It’s unfortunate that this book was so inaccessible, when any information added to the discourse about autism is obviously important, and already quite dense and complicated to many people.

    I agree that autism sometimes comes with unusual mental skills, and like most neuro atypical conditions, it probably evolved because there ARE benefits that some autistic people can bring to society that others can’t give. It’s a shame so much information about autism focuses on the negative, when from my observations, many of the problems that come with autism arise out directly from those abilities – they still need to be managed to make life easier for the autistic person, but not erased.

    Thank you for summarising this book, a shame it didn’t explore in a helpful way.

    1. It followed a pattern I’ve noticed in other non-fiction books originating in the US — the inclusion of so much extraneous material under the guise of ‘case histories’.

      I am interested in people, really I am, but in a book purporting to study a condition I questioned the relevancy of much that was included: it obscured the thrust of the arguments and made the theses (already at odds with the book’s title and subtitle) even harder to discern, let alone follow.

      This and similar books seem to be saying, Look at all the research I’ve done, all the interviews I’ve made, isn’t it impressive? My response is No, it isn’t, you need to prune, cut to the chase, made your points succinctly.

      But I’m pleased you got something from the review, Petra, autism is an important issue, as you’re all too aware of.

      1. Hm, I guess being an Amurrican I actually appreciated the case studies. I don’t mind digressions when they illuminate the topic. But I was also left in the end with an impression that a focused point had not been made. I need to do more reading in the field to learn more about what was missing.

        1. I didn’t mean to be offensive, Lory, it’s clearly just a different cultural approach where case histories are concerned! But you put it well when you say your impression was of a lack of focus at times. And, yes, we shouldn’t rely on one book to tell us all we know about the condition.

            1. Yes, the English view of Amurricans as generally having little or no sense of irony and a lack of self-deprecation is entirely at odds with my experience of witty and insightful Stateside bloggers like you, Lory, and a host of other correspondents!

      2. inkbiotic

        I think it can be a temptation for anyone working in academia – the need to show off the writer’s own knowledge rather than increase the knowledge of others. Hopefully a better book will come along soon – with the increase in awareness and diagnosis it’s likely to happen. 🙂

        1. To be fair, Silberman is a journalist rather than an academic, but from his references he seems to have been thorough enough — though I would have liked to have seen some discussion of autism spectrum disorder research (if it exists) other than just in the US and, to a lesser extent, in the UK.

          There are many other specialist books on autism, from publishers such as Exisle in Australia and Jessica Kingsley Publishers in the UK, and I’ve previously reviewed a book by Sarah Hendrickx about women and girls with ASD, but it would be good to know of a good reliable introduction to ASD aimed at the general public.

    1. I’m pleased you found it of interest, Dale — I found this a difficult book to review, being both conflicted and frustrated by its discursiveness when all I wanted was a straightforward account. But I am glad I managed to read and review it, even if my review has ended up a bit too discursive too!

      1. earthbalm

        Don’t think you can be too discursive Chris – dialogue is everything to me. The rest of the world seems to disagree. More about that in a post planned later for today. A post, which like the majority of my posts, will probably reach a score of people at the most – thank goodness!

          1. earthbalm

            No Chris, no tangent. I enjoyed your reply. I’m selling most of my musical equipment on Fleabay at the moment and have been busy photographing, arranging couriers etc. My next post is of my most expensive guitar and I’m making it purely because the forum I’ll be advertising it on needs photographs that are hosted elsewhere, if you know what I mean. I’ll get back to you shortly.

  2. Pingback: The Legacy of Autism – Earth Balm Music

      1. gertloveday's fun with books

        Informative review, Chris. the ‘case history’ thing I think provides padding to many books which have a thin message. I’m not saying it’s the case here (and how great to have the author himself giving a detailed reply to your review) , but many pop psychology, self-help, diet books etc are full of them.
        Would it be very stupid of me to say (as a quite an uninformed person) that could there not be a case for autism being just another variety of human behavior. I know in some forms it is limiting, but why the urge for rigid classification. I feel the DSM is closely allied to the pharmaceutical industry.

        1. I certainly wouldn’t have said Silberman’s message is thin, Gert — and you do acknowledge that — though I do come back to my description of the book as a bit too discursive for my tastes.

          From the little I’ve read I’m not sure that autism could be described as “just another variety” of human behaviour. Not for nothing is it characterised as a spectrum; and when you take a look at the diagnostic criteria it’s perfectly possible to see that everybody has one or other criterion — it’s the amassing of criteria that determines the severity of the condition. Far from being a rigid classification there are subtle shades involved.

            1. I can’t say that I’m much more well read than you about this subject, Gert!

              I meant too to respond to your comment on the DSM and the pharmaceutical industry (something I know little about, either): as psychiatrists are able to prescribe medical interventions — something psychologists are not in a position to — it’s not surprising that they have a relationship with Big Pharma that could be regarded as ambiguous.

              But, as I understand it, the basic criteria for ASD drawn up by Lorna Wing and her colleagues don’t seem to rely on the medical model to treat autism, though some aspects of autism such as chronic depression may well require such intervention.

  3. Chris, thanks for such a thoughtful review. I really appreciate it!

    A couple of comments: The reason I chose to present a thorough “on the ground” history of autism, with much historical detail, was that I felt there were so many historical misconceptions about autism that needed to be corrected, including my discovery that the nearly simultaneous discoveries of autism by Hans Asperger and Leo Kanner were not coincidental, as textbooks have insisted for decades, but very much connected through Asperger’s (and later, Kanner’s) colleagues Georg Frankl and Anni Weiss. And there were many more misconceptions that needed rubbishing, such as the notion that “regressive autism” didn’t exist before the MMR vaccine, as Wakefield insists.

    So, in a very real sense, I felt I had to build the world of autism back up from scratch, without taking anything for granted. If I had gone the more “straightforward” route of just writing a short book of my own theses about autism, nobody would have believed it, because the historical grounding would not have been there. Much of the history in my book is new, and certainly new to general readers. (And yes, I am not an academic “showing off” my research — believe me, if I could have made this a shorter book while accomplishing what I needed to accomplish, I would have.)

    I’m also not sure that this book is not “accessible,” considering the sheer volume of people who have enthusiastically read it and gotten in touch with me, which includes parents, clinicians, researchers, policymakers, autistic people themselves — and people who have no personal connection to autism whatsoever. I felt it was important to reach that latter group too, because decisions on such crucial subjects as vaccine policy and research agendas are often influenced by public opinion and the media.

    So, yes, it’s a long narrative book, though I wouldn’t call it entirely a book of “case histories” by any means — the World War Two material, for example, is just straight-up history.

    In any case, thank you for giving my book such a deep read.

    1. Thanks, Steve, not only for your appreciation but also for taking the time to read my critique and then providing a full and considered response. I now feel faintly embarassed for being so forthright, despite the comments being my own honest response!

      Having come lately to the literature on autism — and only recognising it in myself as a result — I appreciate that the historical misconceptions you mention are only too real and that there is a need to vigorously refute them. (And you make the previously unacknowledged interconnections between Asperger and Kanner very clear.)

      I accept that your thoroughness was to make as strong a case as possible with an audience which might at the very least be sceptical around autism and those with the condition. All your points underline your intentions for this book very clearly — perhaps I wasn’t the prinary target audience though I have to say I learnt so much from it, not least the historical context.

      So, please don’t think I’m setting myself up in presumptuous opposition to the late Oliver Sacks or those who awarded NeuroTribes the well-deserved Samuel Johnson Prize, or those better informed critics who’ve favourably received your book! To paraphrase an amateur philosopher, the fault lies not in your study but in myself.

  4. Christine

    Hmm, what an unexpected choice of book. I’m not very familiar with autism and was only introduced to the subject a few years ago when the biopic on Temple Grandin came out (which had its flaws, of course, but was seemingly well-received by people more knowledgeable about the autism spectrum). I share the frustration you seem to feel about digressive case studies, though not because I dislike extraneous information. Rather, I like reading about extra things on the side, usually in an appendix at the end that I can use to consolidate the previous hundreds of pages’ content. I always worry that these books on unfamiliar topics will simply go in one ear and out the other (if you’ll forgive the strange imagery), how does one retain so much new information? Or do we just retain an impression and move on from there? Thank you for the review, it makes for a very tempting introduction.

    1. Like you, Christine, I prefer in-depth details in an appendix rather than in the main text where they may possibly interrupt the flow of the narrative. True, Silberman does break up chapters into sections (four, for example, in ‘The Invention of Toxic Parenting’, with additional unmarked subdivisions), all of which helps, but I still found that my stamina was often flagging after long stretches of personal histories.

      Having said which, my retaining a personal interest in the topic did help immeasurably, though I don’t know how a casual reader would cope. By the way, I only heard of Temple Grandin as a result of getting drawn into the subject, and not the other way round as with you. She sounds fascinating, and is rightly accorded some attention in NeuroTribes.

  5. Nice review. I felt quite differently about the book – in fact I just looked back at my review and saw that I described it as having the pace of a thriller!

    I think the case studies and the history are interesting because they raise questions not just about what autism ‘is’ but also about how society at different times perceives it. I liked the way the theory, the everyday experience of individuals and the wider culture were linked.

    Interesting that we had such different responses…

    1. I do love it when reviews reveal how it’s possible to have equally valid but different perspectives on a work. I did value the case studies and the history for demonstrating how assessments and perceptions of autism varied; to my taste at times they were a little too detailed, such that I couldn’t see the forest for the trees. I can see how you regarded the narrative as a pacey thriller; I suppose for some of the time I just wanted Silberman to cut to the chase! But that’s just me.

      Thanks, Kate, for reading and commenting on the review, even if we agree to *slightly* differ. Now I must go and find your review — I’m always very happy to revise my opinion!

    2. Found your Amazon review, but need to log in to rate it as ‘helpful’! In the meantime, apart from the paciness assessment I agreed with all that you say. 🙂

      1. Sorry, I should have posted the link – been on Goodreads forums lately where they frown on anything that could be construed as self-promotion so I’ve got out of the habit…

        1. No worries, it’s wonderful (and also rather scarey) what search engines reveal if you ask very precise questions …

          I’ve been neglecting Goodreads and LibraryThing shamefully since I discovered the joy of blogs, hard to go back with much enthusiasm — and there’s only so much time spare, what with real life butting in …

  6. Pingback: Neurotribes by Steve Silberman | Kate Vane

  7. Is life…the eating, sleeping, defending stuff …so easy these days that we have too much time for too much thinking? I guess there is always discovery — but sometimes I get confused between sophistry and discovery. 🙂 Too cool. Too hip. A glass of fresh water will suffice when I have thirst.

    1. Your comments remind me of a supercilious poster popular in my student days: Students think too much! I think this was a dig at philistine attitudes, but it may have been satire, you never know.

      Do you know, I believe the leisured classes have always had free time to do too much thinking — it’s only as populations increase and the world gets more connected up that thinking itself seems available to so many.

      But then, it’s easy to conflate thinking and being opinionated (which doesn’t involve much deep thinking, I think you’d agree). These days, we all feel entitled to an opinion (I’m opining here, of course), whether or not any thinking has truly taken place. Which may be akin to your point about sophistry and discovery. 🙂

      Anyway, perhaps the cool glass of water is the best antidote — to tip over oneself rather than drink — to cool the ardour of too much meditation. I’m doing it right now …

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