Abstract
Simply looking at where most of the research dollars go in autism, one would think that genetic or genomic data held the answer to diagnosis and treatment. However, as Jennifer Singh’s recent work demonstrates, this has not proved to be the case. The short but crucial chapter of her book based on interviews of adults with autism underlines why it is impossible.
Singh has prepared an informative report on the history and current state of genetic and genomic research into autism, gathering multiple viewpoints and attaching them to a chronology of developments. However, as is typical in current medical research on autism, the views of clinicians and parents are presented in much greater detail than those of people actually living with the condition. As parents and clinicians are the ultimate marketing targets for this form of research, this focus may be important for understanding how the primacy of genetics and genomics has been achieved. But given the state of the so-called ‘autism industrial complex’ (Milton and Moon, 2012; see also Eyal et al., 2010), it is a realistic fear that this data will primarily be used to craft better-targeted sales pitches.
Although historians of medicine and disability will find much of interest here, at times the author’s engagement with analysis is shallow, remaining at the level of ‘some scientists say x, some adults say y’. This leaves the reader struggling to evaluate competing claims and positions. In particular, the financial incentives that lie behind many aspects of the story are neglected. For example, Singh identifies that diagnosis is a type of payment that could encourage participation in genetic and genomic research, and parents have put children forward as research participants despite the low level of understanding that her research reveals. However, the discussion stops there. The social conditions and beliefs that encourage parents to grasp for more and more desperate interventions are also left unexplored, even though the concept that people with developmental disabilities are less than human is important in parental motivation, and in the motivational discourses of geneticists and clinicians.
Singh outlines the process by which a disease model of autism has come to predominate in the USA, and how this has been followed by a ‘Big Science’ approach to research priorities. This is ground that other authors have not investigated so deeply, and her book is worth reading for this material alone. However, the reader will need to consult other sources to understand the economics of the situation, priorities and practices outside the USA, and the political battles raging behind the scenes. For example, I was especially surprised to see that Singh notes the involvement of two adults with autism, John Elder Robinson and Ari Ne’Emen, with organizations that have an impact on research priorities, without also mentioning that both of them have had well-publicized struggles with Autism Speaks, the behemoth of genetic and genomic research funders. This matters; it is hard to imagine other ‘patient’ groups (people with HIV or breast cancer, for example) being deliberately side-lined and maligned in such a way.
Mapping the ‘autism genome’ is pulling a wide swathe of the human population into a net of surveillance, and simultaneously diverting research funding away from the educational help and adult services that improve the lives of people with autism. If the priorities of large corporations, rather than those of autistic people, continue to predominate, the result is likely to be little progress towards the betterment of their lot, as Singh’s research amply demonstrates has been the case so far. While she recognizes that there is controversy and potential risk, she can only suggest that data-fuelled projects like the Google Genomics’ MSSNG collaboration with Autism Speaks will be ‘in need of social-scientific investigation’ (p. 179). Indeed, researchers and practitioners will need to explore much further in order to fully understand the troubling trajectory that Singh describes and its implications, and how this particular strand of autism’s medical history fits within its social history (Silberman, 2015; Waltz, 2013).