Worlds of autism: across the spectrum of neurological difference

Intended as an introduction to research and theory in Critical Autism Studies, this volume brings together essays from authors like Majia Nadesan, Mark Osteen and Michael Orsini. As the introduction by co-editors Orsini and Joyce Davidson notes, the ‘criticality’ comes from investigating power dynamics that operate in discourses around autism, questioning deficit-based definitions of autism, and being willing to consider the ways in which biology and culture intersect to produce ‘disability’.

As is typical with collections, submissions range over a variety of related topics, as well as in tone, standpoint and rigour. Four organizing themes were applied to the material included: approaching autism, around issues of autistic personhood; researching the politics and practice of care; diagnosis and difference in autism; and cultural productions and representations of autism. Certain essays stand out more strongly than others. Among the most thought-provoking were Patrick McDonogh’s ‘Autism in an Age of Empathy: A Cautionary Critique’ (31–51), Francisco Ortega’s ‘Cerebralizing Autism within the Neurodiversity Movement’ (73–95), and Dora Raymaker and Christina Nicolaidis’s ‘Participatory Research with Autistic Communities: Shifting the System’ (169–188).

McDonagh presents an insightful discussion of the term ‘empathy’ and the history of research into and beliefs about this often poorly defined concept, one that in recent years has become tightly bound to both popular and academic notions about autism. It is well worth reading, particularly for its measured, effective refutation of key points of the autism–empathy linkage, and of the dubious deployment of ‘empathy’ in pop psychology and pop economics discourses. For me, McDonagh did not go far enough towards revealing the gaping holes in the concept of empathy as it is typically used within and without autism research. This is a question ably explored previously by (autistic) researcher Damien Milton (2012), and one in need of much further research – for example, it is not yet known how many ‘neurotypical’ people are ‘unnatural empathisers’ (34), either some or all of the time, making comparisons questionable.

Ortega’s intriguing chapter takes off from Ian Hacking’s (2009) provocative philosophical discussion of looping effects in the context of autism, considering potential impacts of adoption of neurobiological (‘cerebralizing’) discourses amongst both advocates of neurodiversity and other actors in the world of autism research and treatment. Ortega’s work is cited by numerous other authors in the collection, and well it should be – he teases out a troubling side of the development of collective identities based on the idea of brain-as-mind. This is of interest far beyond the autism field, particularly so given the unexamined nature of much research into ‘brain-based’ differences.

Raymaker and Nicolaidis do an excellent job of describing the current terrain of autism research, pointing out how little relates to the priorities of autistic people or has actual practical value. They position community-based participatory research as an approach with great potential to rectify this situation, albeit one that will quickly encounter institutional barriers to funding, as Nadesan ably discusses in her chapter, ‘Autism and Genetics: Profit, Risk and Bare Life’ (117–142). It is an approach that the authors have themselves used (Nicolaidis et al. 2013), thereby garnering results that are accurate and useful.

Kristin Bumiller’s contribution, ‘Caring for Autism’ (143–168) is also particularly interesting and detailed. She looks at how the neoliberal state has created new forms of privatized institutionalization in the form of professionalized disability parenting and segregated service provision, while removing most financial and practical help from disabled people.

There are aspects of the collection that are less satisfying. For example, of the 19 contributing authors, it appears that only two are themselves on the autism spectrum. Of these, one (Dawn Eddings Prince) is represented by a book-closing personal essay rather than research, despite being a researcher.

As an early and active proponent of criticality in autism research, I believe it is past time we started to ask about the ongoing issue of non-autistic professionals making careers in Autism Studies when many autistic people are seemingly expected to contribute to research and policy projects without pay, including those (and there are now many) who have themselves achieved research or practical qualifications in autism, sociology, linguistics, and so on. As a long-term researcher and lecturer in Autism Studies, I have always felt that one of my key goals is to nurture autistic researchers who could take my place. However, I continue to detect tokenism and occasionally exploitation in how people with autism are used as research subjects, how their words and actions are chosen, interpreted and bracketed within research, and a worrying lack of rigour in some Autism Studies scholarship.

It is easy to find a quote online or in a book by a person with autism who happens to agree with your position, and another who happens to disagree, and then divert the reader’s attention towards discourse analysis of carefully chosen examples. It is much harder – as several of the best contributions to Worlds of Autism discuss – to carry out wide-ranging research with a very heterogeneous population made up of complex people with identities that cannot be encapsulated by a medical diagnosis. Real participation and co-production of research takes extra time, can be challenging, and runs counter to the career goals that academics are incentivized to pursue. But if we are going to be truly critical, those of us working in Autism Studies could do well by starting with a look in the mirror.

Mitzi Waltz
Sheffield Hallam University, Sheffield, UK
Disability Studies in Nederland, the Netherlands
[email protected]
© 2014, Mitzi Waltz
http://dx.doi.org/10.1080/09687599.2014.934064