Abstract
The history and sociology of autism is a particularly relevant topic, with Madjia Holmer Nadesan’s reflections on the growth of cognitive approaches to autism in the information age first sparking interest in 2005. Since then, Chloe Silverman’s sensitive portrayal of the parent power movement in the USA and the highly-convincing discussion of the autism ‘epidemic’ by Gil Eyal et al. have provided essential background reading. Furthermore, work on popular representations of autism, including the trendsetting work of Stuart Murray and Ian Hacking, is also flourishing. Autism: A Social and Medical History covers some of the same ground as these other works, but Waltz’s main contribution is to provide a detailed understanding of autism self-advocacy and the growth of disability studies.
Mitzi Waltz worked as a journalist for 13 years before writing her PhD on media and cultural studies/disability studies, on which this book is based. She has expertise in disability studies approaches to autism and has served as an expert witness in legal cases concerning disability and autism. Undoubtedly, Waltz has a detailed understanding of autism. However, there are downsides to this familiarity, as her historical approach sometimes appears to be guided by this external knowledge rather than detailed reading of the sources. The book provides many insights into how different approaches to autism have clashed throughout history; however, the early chapters in particular would have benefited from a more rigorous historical methodology.
Autism begins by describing the cases of two children treated by Dr William Howslip Dickenson at Great Ormond Street in the 1870s. Waltz retrospectively diagnoses these children with autism and argues that Dickenson’s case studies could have – and should have – developed into the basis for medical studies of autism but did not because of wider trends in the history of workhouses, asylums and hospitals. Unfortunately, Waltz does not locate her reading of these cases in relation to the large literature on the history of nineteenth-century medicine and childhood in Britain, so the claim remains questionable. The work of Hilary Marland, Andrea Tanner, Sian Pooley and Ellen Ross would have been particularly informative in this respect.
The next chapter sweeps the reader back to ‘hunter-gatherer’ societies, ancient Greece and early Christian, Islamic and Jewish beliefs on charity, disability and madness. In Chapter Three, Waltz focuses briefly back on England, relying on Roy Porter to describe how private madhouses emerged in the eighteenth century, suggesting that ‘some adults on the autistic spectrum … may have ended up in one of these’ (p. 27). She does not, however, reflect on what is unique about autism as a category for understanding human difference, or the concept’s history. She draws attention to the pernicious effects of what she broadly defines as ‘social Darwinism’, but tends to conflate North American, British and other European sources. She does not reference relevant work done on the history of psychology by Adrian Wooldridge, Gillian Sutherland, Leslie Spencer Hearnshaw and Nikolas Rose, or the work of Geoffrey Searle, Carl Degler, Mike Hawkins and others on social Darwinism. Some significant factual errors also occur in the initial chapters, such as the statement that Sigmund Freud invented psychology (p. 32) and that schizophrenia was considered to have no organic aetiology in 1943 (p. 57). These omissions and errors are unfortunate as they detract from the clearly legitimate and important sentiments of the whole book which affirm autism advocacy and the rights of individuals with autism.
When Waltz addresses the more recent past, the book becomes more focused and insightful. In Chapter Four, Waltz covers Leo Kanner’s famous 1943 article on autism, describing his opposition to Robert Foster Kennedy, one time president of the American Neurological Association, who supported euthanasia for disabled children. This debate highlights the complicated social pressures faced by researchers such as Kanner. Waltz points out the significant chromosomal syndromes discovered in the late 1950s and other important work on errors of metabolism and intellectual disability in the twentieth century. However, she claims that ‘the search for biological markers and mechanisms for mental health difficulties, and the discovery of medications that might ease symptoms … [has] largely passed autism by’ (p. 67). She draws attention to continuing controversies regarding psychoanalysis, institutionalization, and the call by disability advocates to adopt new approaches to autism, continuing this discussion into Chapter Five.
In Chapter Six, Waltz discusses treatment methods for children with all forms of atypical mental development in the twentieth century, drawing on important interviews with Gary Mesibov, Uta Frith and John Clements to demonstrate how autism became a central point of contention between different therapeutic schools in this period. Chapter Seven addresses the rise of parent organizations in the 1960s, showing how they challenged prevailing medical orthodoxies. It also features an interesting personal communication with Bernard Rimland, research psychologist, parent of an autistic child, founder of the National Society for Autistic Children, and the proponent of new, often controversial, investigations into biochemical causes of autism, including changes caused by vaccines.
The final chapter of the book focuses on self-advocacy. Waltz rightly indicates that ‘the emergence of people with autism as actors with agency in the history of autism is relatively recent’ (p. 133). With the advent of the internet, autistic individuals found new ways to communicate. In 1992 Jim Sinclair formed Autism Network International (ANI) and a year later, wrote ‘Don’t Mourn for Us’, a key document in the self-advocacy movement which challenged the idea that autism should be cured, or regarded as pathological. Waltz successfully shows how these approaches have clashed radically with the growing parent movement, in particular the formation of Cure Autism Now in the USA (1995), which has spent millions of dollars on biomedical research into the causes, prevention and treatment of autism. Several high-profile disagreements between self-advocates and professional psychologists and parents have since developed. This pull between different approaches continues and is exacerbated by controversies about vaccines and the veracity of the autism ‘epidemic’.
Waltz concludes briefly by affirming the findings of disability advocates, claiming that more time should be spent trying to understand ‘the rich and varied lived experiences of people designated as “on the autistic spectrum”’ (p. 165), rather than to focus on cure and prevention. Her highly-politicized take is evident in sentences such as ‘economic changes appear to be narrowing the space for difference within neoliberal capitalism’ (p. 165); Waltz argues that this must be reversed.
There is much of interest in this book, including its rich interview sources and coverage of recent controversies that have plagued autism researchers. However, it remains difficult to characterize this book, as it swings between disability advocacy, history, media studies, social science and autism research. Although the methodological shortcomings and political tone can frustrate, the latter chapters draw attention to the need for increased dialogue between autism advocates, disability studies scholars, historians and social scientists. This kind of dialogue is absolutely crucial, and Waltz’s work must be credited with making autism self-advocacy an important chapter in the history of autism.