Dr. Julia Halpin an ex Autism Centre student whose doctoral thesis was entitled ‘The Role of the Nurse in Preschool Autism Assessment’ reviews here one of the most talked about autism books in recent years.
Silberman, S. (2015) Neurotribes: The legacy of autism and how to think smarter about people who think differently. London: Allen & Unwin 515 pages. Price £16.99
This history of the way in which autism has been identified and perceived over the last two centuries is refreshing because it is written from the point of view of an investigative journalist rather than a clinician or an educationalist. Silberman tells a series of people stories, including not only stories of autistic people themselves, but also academics, activists and advocates. The book charts Silberman’s own journey from intellectual curiosity about a medically defined syndrome to passionate advocacy for neurodiversity: reading it could encourage others along a similar path.
Silberman’s interest was aroused when in 2000 he covered a shipboard technology convention for ‘Wired’ magazine which was dubbed a ‘geek cruise’. He observed,
‘My fellow passengers were not just a group of IT experts who happened to use the same tools. They were more like a tribe of digital natives……..they were a convivial society of loners’. ( p3)
In conversation Silberman discovered that a surprising number of the ‘geeks’ he met seemed to have one or more children with a diagnosis of autism, which at the time he understood to be a very rare neurological disorder. Back in Silicon Valley, he was alarmed by a specialist teacher who informed him that there was an ‘epidemic’ of autism in the neighbourhood. Intrigued, Silberman embarked on a thorough investigation of the scale of the perceived rise in incidence and prevalence of autism in the developed world, and situated the phenomenon in the time line of autism history. His article “The Geek Syndrome” was published in ‘Wired’ in December 2001, but proved to be the beginning, rather than the end, of Silberman’s investigations into autism. The flood of correspondence he received convinced him that despite the time that had passed since Kanner and Asperger, autism was really very poorly understood, and Silberman wanted to know why. Answering this question led him down a long road of studying biographies, autobiographies, and listening to very many individuals and families with personal experience of autism. In this book he enriches these accounts by placing them in historical educational, medical, political and sociological context, and he weaves a complex thread of understanding of autism which leads him to conclude
‘Whatever autism is, it is not a unique product of modern civilisation. It is a strange gift from our deep past, passed down through millions of years of evolution’.(p470)
The first two long chapters may seem at first reading to be an excessively leisurely and detailed description of certain autistic individuals. Silberman paints journalistic portraits of the scientist Henry Cavendish, whom he dubs ‘the wizard of Clapham Common’; the ‘father of modern physics’, Paul Dirac; and a little boy called Leo Rosa, introduced to the reader as ‘the boy who loves green straws’. However by taking the reader deep into the lives of these people, Silberman powerfully illuminates the way in which the social environment, politics and trends in medicine, psychology and education dictate how autistic people live their lives.
The next chapters are the story of the development of the thinking of Asperger and Kanner among others. The book is unusual in that Silberman places these two major researchers in the context of the prevailing ideologies in the years leading up to the second world war. His account of the ethos of the children’s clinic within Vienna University where Asperger began his work is illuminating. It was founded by Lazar in 1911, on the premise that children who were different were not sick, but neglected by a culture which failed to educate them in a way that suited their learning styles. This inclusive ethos starkly contrasted with the brutal attitude of the strengthening Nazi regime which progressively permeated the university, espousing eugenics and the elimination of ‘abnormalities’. Asperger found an increasingly urgent need to advocate for his young patients. His argument was that although for the majority of autistic children, “ the positive aspects of autism do not outweigh the negative ones “ (p.104), there were other children whose social difficulties were more than compensated for by their ‘autistic intelligence’. This he described as particular cluster of abilities, attitudes, aptitudes and skills which were essential attributes of any great scientist. He went further to say that autistic people had made great if unappreciated contributions to scientific and artistic culture, and that efforts should be concentrated on developing appropriate educational methods for them. Asperger thus articulated the autism spectrum, but sadly his work, and the clinic, were to be victims of the war.
Silberman is less sympathetic towards Kanner, particularly his attitude towards Asperger, whose work he only ever cited once, otherwise maintaining what Silberman describes as a ‘sphinxlike silence about his Viennese counterpart’ (p.141).Ironically, two of Asperger’s former colleagues in Vienna, Georg Frankl and Anni Weiss, both having fled to New York from Europe, were soon to become part of Kanner’s diagnostic and therapeutic team. Despite this Kanner described their patients in terms of psychiatric disorder rather than human variant, and looked for a cause to parenting, or as Silberman puts it,
‘Where Asperger saw threads of genius and disability inextricably intertwined in his patients’ family histories – testifying to the complex roots of their condition and the “social value of this personality type”, as he put it – Kanner saw the shadow of the sinister figure that would become infamous in popular culture as the “refrigerator mother”’. (p.188)
Silberman sees mother-blaming as one very unfortunate outcome of Kanner’s work. He forms the opinion that both Kanner’s strict diagnostic criteria and his insistence that autism was a rare form of childhood psychosis significantly inhibited the progress of autism research. It took until 1971 for Kanner to concede that perhaps ‘early infantile autism’ should be less narrowly defined. Meanwhile children and parents suffered from institutional and medical mistreatment and adults were denied the diagnosis and understanding which Silberman suggests might have been theirs had Asperger’s concept of the autism spectrum been promoted rather than ignored .
Silberman goes on to describe in a chapter entitled ‘Princes of the air’, how even as the clinicians argued over diagnosis, people with autism were quietly meeting each other through mutual interests in wireless communication, science and science fiction, and developing the beginnings of an autistic community. The stories are told of the entrepreneur Hugo Gernsback, the inventor Nikola Tesla , John McCarthy of Massachusetts Institute of Technology who pioneered the study of computer programming, and Lee Felsenstein, whose electronic bulletin board foreshadowed the explosion of social media. Silberman describes these and others as ‘Asperger’s lost tribe’, putting their autistic intelligence to work to create a space in society in which they could be at home.
In another long chapter, Silberman turns his attention to the development of therapeutic approaches to autism by telling the story of Bernie Rimland, the father of an autistic child born in 1956. Rimland became an influential activist and researcher in his search for a means for parents, rather than professionals, to ‘fight the monster’ of autism. Silberman vividly describes some of the questionable methods used by Lovaas in developing applied behavioural analysis in an attempt to normalise autistic children, as well as efforts to remedy autism through diet and vitamins. He goes on to relate how Rimland contacted, motivated and recruited other parents into a “mighty army “ (p.296) ready to fight for education and recovery for their children through the alternative organisation Defeat Autism Now!
In his eighth chapter, Nature’s Smudged Lines, Silberman takes the reader through the experiences of Peter and Liz Bell, who in a quest to help their sons eventually became leaders of Cure Autism Now, and later Autism Speaks. He progresses to an engaging biographical portrait of Lorna Wing and her daughter Susie. This book makes crystal clear the difference to autism research and activism made by parents, some of whom were also medical professionals. Lorna Wing played such a major role in modifying the diagnostic criteria for autism because she spoke with the confidence born of experience,
‘“ When I read Kanner’s later papers,” Lorna told me, “ I thought they were bloody stupid. I knew I wasn’t a refrigerator mother.”’ ( p.346)
Wing went on to promote the concept of a spectrum of autism, and the term Asperger’s Syndrome, despite a ‘backlash’ from some who associated Asperger’s work with the Nazi regime, and who preferred the term ‘high functioning autism’.
A whole chapter of this book is devoted to an exploration of ‘The Rain Man Effect’. The reader discovers the origins of the film in the life of Barry Morrow and his autistic friend Bill. He describes their relationship as
‘ … a beautiful and unlikely friendship that would change the course of autism history’. (p.357)
This may seem like something of an overstatement, but Silberman’s point is that ‘Rain Man’ opened the eyes of the general public to the autistic people in their midst in a way that no research paper ever has or will.
Chapter ten explores the ‘pandora’s box’ that Wing felt she had inadvertently opened by widening the diagnostic criteria. Much of the chapter is taken up in exposing the ‘dark secret’ of the DSM (p.388), which was that much of the data behind its definitions up to DSM 111 was ‘sketchy and provisional’. Silberman describes the power struggles between clinicians over diagnostic criteria and the direct effect that tweaking the boundaries of autism in the DSM had on its apparent prevalence. At the same time, clinicians as well as parents were more aware of autism and many children previously diagnosed as having learning difficulties or mental health problems were reassessed and rediagnosed. Instruments to screen for and measure the characteristics of autism developed at the same time as the demand for diagnosis increased, and the ‘clinical population’ skyrocketed between the mid 1970s and the 1990s.
Despite all this, what Silberman calls the ‘lore of the epidemic’ (p.409) continued to grow. The increase in autism was blamed on the DPT vaccine and then the MMR vaccine, and Silberman describes the rise and fall of Andrew Wakefield and his work in terms of ‘one of the most influential journal articles in the history of public health…but… one of the most widely and thoroughly refuted” (p.420). Silberman describes the raging controversy around the causes of autism as the ‘autism wars’, and blames the arguments over diagnosis for diverting attention and funds away from the provision of education and other services for autistic people.
In chapter 11 Silberman relates the ‘coming-out’ tales of several autistic individuals, including Temple Grandin, who was first persuaded by Rimland to identify herself at a professional conference on high functioning autism as someone who had ‘recovered’ from autism. She later came to realise that she had not ‘recovered’, but learnt to adapt to a culture which was alien to her, whilst possessing a mind which in the technical field was far more efficient and effective than that of a non-autistic person. In articulating this she argued that to eliminate genes like hers from the human race would be likely to deprive the world of its best scientists.
As adults with autism became more visible, they also became more confident in self-advocacy, and Silberman describes the lives and events involved in the formation of the first autistic-run organisation, Autism Network International. The growing confidence of the autistic community was reflected in its language, referring to non-autistic people as ‘neurotypicals’, and insisting on themselves being referred to as autistic people rather than ‘people with autism’, which implied autism was some sort of negative symptom. Clashes with parents in search of a cure for autism were inevitable, and Silberman charts the divergence in paths between these parent led groups and the ANI. Autretreat 1996 was the first conference held by autistic people themselves, designed to be held in an ‘autistic space’ which would enable attendees to participate.
The idea that autistic people had always been present in the world and that their way of being was a valid (rather than in-valid) way of being human was gathering pace, and was finally named by Judy Singer in the late 1990s as ‘ neurodiversity’. Silberman again illuminates his account of the rise of groups such as ASAN, the autistic self advocacy network, by telling the human stories behind them. This gives the reader an understanding of how ASAN grew increasingly aligned to disability and minority rights organisations, and increasingly vocal in their opposition to organisations such as the New York University Child Study Centre which still publicised autism as a public health epidemic .
In his final chapter, Silberman takes the concept of neurodiversity into the future by proposing society takes account of different ‘human operating systems’ rather than identifying autism, dyslexia and ADHD as undesirable medical conditions. As he says,
‘Just because a computer is not running Windows doesn’t mean that it’s broken. Not all the features of atypical human operating systems are bugs’. (p.471)
Silberman calls for autistic individuals to have their skills and strengths as well as their vulnerabilities recognised in schools , in the workplace and in the research community. In the closing chapter of this book he highlights where this is happening, for example the Danish company Specialisterne, which purposely employs people on the spectrum to ‘put their autistic intelligence to work’ in the development of new technologies. Silberman’s argument is that instead of concentrating on the battle to eliminate autism, energy and resources should be directed towards building a world which is truly inclusive.
This is not a short book, but repays the time spent following Silberman on his journey of understanding. Looking at the history of autism through the lives and times of autistic people opens up contemporary issues and debates around autism and situates them in context. Silberman ‘s skill as story teller leaves the reader with a nuanced understanding of the past and present of autism and a vision of how the future could look. Hopefully readers will also be motivated by his concluding sentence,
‘ There is much work to be done’. (p.474)