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Tuesday, June 7, 2016

Review - The Perils of Reading History Backwards: In a Different Key: The Story of Autism, by John Donvan and Caren Zucker

From lbrb - Left Brain Right Brain

By Michael Fitzpatrick
February 7, 2016

"Though Donvan and Zucker, like Silberman, have made a valuable contribution in recording the key events in the rise of autism over the past half century, this particular chronicle still awaits rigorous historical analysis."

Hard on the heels of Steve Silberman’s award-winning Neurotribes comes another grand scale history of autism, at 688 pages even exceeding the 544 pages of its predecessor.

The books have much in common: both are written by journalists with an eye for story and character. Both provide comprehensive accounts of the clinical and scientific advances of the past half century, and offer sketches of key figures on both sides of the Atlantic.

They cover issues of institutionalisation and de-institutionalisation, parental campaigns (challenging professionals and bureaucrats to raise awareness, provide education and social support), and controversies (over causation, diagnostic labels, treatments, interventions and ‘cures’) and the new wave of internet-facilitated activism by adult autistics.

These histories also share common weaknesses.* Apart from their inordinate length, the narratives are often poorly organised and tend to favour description over analysis – Donvan and Zucker seem particularly reluctant to make judgments on the contribution of authorities or draw conclusions in relation to controversies.


For example, in their discussion of the late Ivar Lovaas, the pioneer of ‘applied behaviour analysis’, they criticise his use of ‘aversive’ punishments to reinforce changes in behaviour – though such methods were commonplace in homes throughout the Western world up to the 1980s – and they also recycle gossip about his womanising. But they fail to provide any answers to the questions about whether modern developments of these techniques are legitimate or effective in teaching children with autism.

The authors’ proclivity for retrospective moral judgements (also a feature of Silberman’s book) gets them into murkier waters in their accounts of the work of the two authorities who first advanced the label ‘autism’ in the 1940s – Leo Kanner in the USA and Hans Asperger in Austria.

From a perspective that assumes a contemporary state of enlightenment, they adopt a distinctly sanctimonious posture towards the prejudices of the past, notably in relation to issues of sexuality and race, as well as diverse forms of disability and difference, where cultural attitudes have changed dramatically over recent decades.

Their criticisms of both Kanner and Asperger for their accommodations to the doctrines of eugenics fail to take account of the strength of the scientific and medical consensus supporting these theories in the first half of the twentieth century.

They also seem to have little sense of the mass psychosis into which Germany and Austria in general and the medical profession in particular had descended in the period of the Third Reich. (See Robert Jay Lifton, The Nazi Doctors: Medical Killing and the Psychology of Genocide, 1986 and Saskia Baron, Science and the Swastika: The Deadly Experiment, and Science and the Swastika: Hitler’s Biological Soldiers, https://vimeo.com/user6162058.)

Donvan and Zucker are critical of Kanner for his approval of the sterilisation of individuals with severe learning disabilities (such procedures were carried out on a larger scale in the USA than in Germany prior to the Nazi period), even though he opposed a proposal for euthanasia, made in a leading psychiatric journal, in 1942.

In relation to Asperger, In A Different Key repeats allegations made by the Austrian historian Herwig Czech in a 2010 lecture, that he made excessive compromises with the Nazi Party and was complicit in the killing of children with severe disabilities in wartime Vienna. The main problem with these allegations is that they have only the status of hearsay – though it is five years since Czech’s lecture, his evidence has not yet been published in a form which allows other authorities to scrutinise his claims and decide on their authenticity.

An additional problem is that the authors fail to draw out the consequences for our evaluation of Asperger’s work, and the status of his eponymous syndrome.

Donvan and Zucker begin and end their history of autism with the story of Donald Triplett, ‘Case 1’ in Kanner’s 1943 paper that launched the diagnosis of autism into the world. Now in his early eighties, Donald is still living in his family house (though his parents are long dead) in the small town of Forest, Mississippi, where he enjoys a good quality of life in a sympathetic and supportive community.

It is a heart-warming story – already told by the authors in an article in The Atlantic in 2010 (and also included in Silberman’s book) – and it reflects significant progress in the understanding and acceptance of autism over the course of Donald’s lifetime.

Unfortunately, such positive outcomes are far from universal, either in the USA or in Britain, where almost every day brings new stories of people with autism suffering from mental health problems and from neglect or ill-treatment in the context of grossly inadequate therapeutic and social care services.

(Meng Chuan-Lai, Simon Baron-Cohen, Identifying the lost generation of adults with autistic spectrum conditions, Lancet Psychiatry 2015; 2: 1013–27.)

A recent report from Scandinavia confirms dramatically higher rates of mortality, affecting individuals across the autistic spectrum, from a wide range of medical causes, epilepsy and suicide linked to mental health problems.

(Tatja Hirvikoski, et al, Premature Mortality in Autistic Spectrum Disorders, British Journal of Psychiatry, 20 November 2015, DOI: 10.1192/bjp/114.160.192).

In his thoughtful and challenging survey of the politics of identity associated with diverse forms of disability, Andrew Solomon comments on the particularly ‘polarised and fragmented’ autism community. (Andrew Solomon, Far From the Tree: Parents, Children and the Search for Identity, 2012).

He contrasts this with the sphere of deafness, in which ‘medicine and activism are galloping’ – whilst in autism ‘both are trudging’. Whereas, in other forms of disability, medical advances have led to a decline in prevalence and severity, in autism, prevalence has risen apparently inexorably – in the absence of any significant advance in terms of therapeutic intervention.

Though Donvan and Zucker, like Silberman, have made a valuable contribution in recording the key events in the rise of autism over the past half century, this particular chronicle still awaits rigorous historical analysis.

John Donvan and Caren Zucker, In a Different Key: The Story of Autism, Penguin, 2016

Notes

*One is an occasional inaccuracy: Nikolas Tinbergen, associated with ‘holding therapy’, was an ethologist – not an ‘ornithologist’; Andrew Wakefield did not, in his notorious 1998 Lancet paper, report ‘traces of measles virus in the intestinal tracts’ of children with autism.

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