Steve Silberman's award-winning 2015 book "Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently" is well worth your time, even if its 520 pages are nearly as dense and unwieldly as its mammoth title. Neurotribes is a comprehensive history of the emergence of the modern understanding of autism spectrum disorders. Silberman is an excellent storyteller, and this well written book is filled to the brim with compelling individual narratives with an enviable capacity to suck the reader in.
Despite its marketing as a pop science book, the strength of Neurotribes lies not in its presentation of the science of autism (which is disappointingly superficial), but by placing the discovery of the autism spectrum in its historic and social context. Through the lens of autistic individuals and their families, we witness the trials and tribulations of the psychiatric profession over the twentieth century; watch with horror as the Nazis rise to power in Europe, and read about the disturbing links between fascist and liberal eugenic beliefs; we see the origins of science fiction as popular literature, the heady early days of the internet, as well as the origins of gay conversion therapy. Neurotribes, in this sense, joins the genre of 'hidden history' now common in the queer community, in which well-known history is re-interpreted and re-experienced through the lives of minorities we now recognise were there in the shadows all along.
For those unfamiliar with autism, Silberman's main aim is to walk the reader away from popular misconceptions about the disorder rooted in the initial scientific description (a single syndrome, causing unique and devastating impairment in early childhood, that is relatively rare) to the modern consensus. The new understanding is embodied by the clinical description of autism as a spectrum of diverse conditions, which appears in the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Silberman attempts to resurrect figures unknown to the general public who were ahead of their time in advocating the spectrum concept, such as Soviet psychologist Grunya Sukharaeva, German pediatrician Han Asperger and British psychiatrist Lorna Wing. Given widespread panic over the modern prevalence of autism and its cause, Silberman's history is a necessary and laudatory corrective.
The author, though, is not a disinterested chronicler and his biases slip into the writing throughout the book. Silberman is writing a story, and he's clear who his heroes and villains are. He valorises certain characters in questionable circumstances and demonises others unfairly; the venom in his prose sometimes detracts from the broader analytic point he's trying to make. The truth is, all real humans are flawed heroes whose individual prejudices reflect the broader historical patterns at play in their time and who cannot be judged sensibly by the standards of a different time - a trap Silberman repeatedly falls into.
Why a spectrum?
Ultimately, the concept of variance as a spectrum is vastly more useful than the formerly dominant scientific (and neo-Platonist) tendency in which every category is represented by an single ideal type. What's the scientific value in defining separate historical species of human when we know they coexisted and interbred with one another? What's the utility of a binary categorisation of sex when we know that even biological sex characteristics are multifaceted and rarely perfectly correlate with one another? And now that we understand that autism is a cluster of interrelated developmental variations, with potentially hundreds of possible genetic loci and scores of possible environmental triggers, the spectrum model helps us see the similarities beyond the superficial differences: more of the signal and less of the noise.
Autism is characterised by both positive and negative traits, but these traits should be seen as part of the psychological whole of an individual, whose life outcomes will depend on whether or not they receive the material support and social environment they need to flourish. From an evolutionary perspective, autism and autism-like cognition are precisely the sort of neurological variance we might expect to see persist in a population, and which highlights the inherent flaw in seeing our biological legacy as perfectly adapted. Autism-related polymorphisms might convey enough of an advantage to some individuals to offset the fitness loss caused by its more extreme manifestations. As might have been predicted by Dual Inheritance Theory, cultures which are 'pre-adapted' to recognising and employing the skills of the neuro-diverse may be better off in the long run than those (horrifically catalogued in Silberman's book) that treat the disabled or different as a burden to eliminated.
Manufacturing Normality
Autism, alongside other mental disorders once considered nearly fatal diseases, is increasingly being recognised as a diagnosis that is socially disabling only for a given social context. No one should downplay the immense challenges that serious mental disorders confer on those diagnosed and their families. And yet, Silberman's book argues persuasively that both the long-term prognosis of those affected and the severity of their symptoms is in large part a function of the understanding and support offered by their carers. There is some truth to the observation that institutions create madness, especially when used by society as an instrument to control those it can't - or won't - otherwise accommodate.
Silberman is particularly astute on the issue of toxic parenting, and its roots in the way society positions parents as the "middle managers" in a vast authoritarian enterprise aimed at producing 'standardised' or 'normal' children. The social pressure place on parents to do their duty in producing perfectly conformist consumers manifests itself as a laundry list of detrimental practices, not least is the vulnerability of parents to fraudsters who promise a quick fix to problems parents don't have the resources or understanding to cope with. Silberman rightly skewers Andrew Wakefield (the promotor of the myth that vaccines cause autism), the anti-vaxxer movement and those peddling 'cures' for autism ranging from homeopathic placebos to potentially tortuous regimens. But he makes the point that the real blame lies with a culture that places unrealistic and impossible duties on parents without providing them the necessary time or resources to perform them.
I hate to sound like a social constructivist unnecessarily, but the boundary between disease and merely odd or unusual observations is often socially constructed: what some parents or doctors will fret over, others will shrug off as normal variation. There is a definite risk that that spectrum model of autism could lead to the medicalising of otherwise benign variance, much as the increase in screening for breast cancer in healthy individuals has led to an increase in medically unnecessary and occasionally risky surgeries.
However, given the current model of funding for social services, Silberman gives voice to the many parents and practitioners that support maintaining the disorder as the only way to ensure continued funding for autism healthcare. In this way, autism appears in the same awkward positions as gender dysphoria: it probably can't be completed demedicalised in the same way homosexuality was in the 1960s. Like trans-identified individuals, people with autism need special assistance and adjustments to manage what might otherwise become crippling social disabilities. Analogies between autism and gender dysphoria litter Neurotribes and in fact support one of its key messages: societies tend to behave as if it's easier to (coercively) change the individual to fit society than expect the whole of society to adapt around them.
The geek disease
Silberman gestures repeatedly towards the aphorism that autism is more than just the 'geek disease', but as a tech journalist he's a tad too indulgent towards Silicon Valley and more than a little in love with the supposed genius of his chosen subjects. The book is overly prone to performing remote diagnosis of historical figures in science and technology - a dicey proposition at best - and he obscures the stories of those diagnosed with true autism by mixing them rather freely with the narratives of "(male) engineers with autistic traits." It is generally recognised today that autism does not discriminate: that it affects the gifted and ungifted in equal measure. But the connection between autism and genius is a sexy story, and Silberman is perhaps more of a good story-teller than he is a journalist of science.
Neurotribes is at its best when the author simply lets people with autism tell their stories in their own words. Situating the autism rights movement and the argument for greater recognition of neurodiversity in the context of earlier reforms opening society up to greater racial, sexual and gender diversity is the right approach. While I would have appreciated a greater emphasis on actual research into the causes of autism, it's true that we don't need to understand the biological roots of variance in order to adjust our societies to it (see also: gender identity). Intersectionality means, as I have mentioned before, letting minorities tell us what changes they need from society in their own voice: in giving voice to perhaps one of the largest minorities in the world, "Neurotribes: The Legacy of Autism" thus performs a valuable service.