Re-thinking autism: diagnosis, identity and equality

Re-Thinking Autism: Diagnosis, Identity and Equality seeks to contribute to the growing field of critical autism studies and, according to one commentator quoted on the back cover, inaugurates this area of study – a bold and yet inaccurate statement, given previous texts and events that have sought to explore this area (for example, Arnold 2012; Davidson and Orsini 2013; Greenstein 2014).

In contrast to the opening lines of the introduction, this book is not the first such edited collection of its kind (see Davidson and Orsini 2013), and neither was the field of critical autism studies previously non-existent. In the introduction to the collection, Runswick-Cole, Mallet, and Timimi frame critical autism studies in terms of attempting to answer two narrowly defined questions: firstly, whether a diagnosis of autism is scientifically valid; and secondly, whether a diagnosis is useful in the lives of those so labelled (the basic premise of the book being that a diagnosis of autism is neither). They then misrepresent both the biomedical model and the views of many neurodivergent activists, suggesting the latter follow a so-called ‘difference model’, organising around ‘biological citizenship’, following Hughes (2009). Runswick-Cole, Mallet, and Timimi state that the collection seeks to unsettle both of these models and their ‘pseudo-scientific’ claims, before echoing Timimi, Gardner, and McCabe (2011) in suggesting that clinical practice should move away from diagnosis as a starting position for service provision. These would perhaps be noble aims, if they were accurate depictions of the accounts of biomedical models of autism and of the neurodiversity movement; however, both areas contain a myriad of different ideologies, the latter including scholars who have been working in the field of critical autism studies.

The collection includes a number of chapters attempting to deconstruct and dispute dominant models of autism, or framing autism as a disabling and unhelpful label. It is a shame that the various authors did not look in any depth at how those identifying with the neurodiversity paradigm or autistic culture have disputed dominant models of autism, nor at work that has looked into the phenomenological accounts of people post diagnosis, which often indicate a wide variety of responses (Bracher 2013).

The ignoring of autistic voices is also pertinent when looking at particular issues, such as in the chapters that look to critique the ‘Theory of Mind’ hypothesis of autism. Other than a brief mention in the chapter by McGuire to the work of Yergeau (2013), these accounts did not reference relevant texts such as Milton (2012, 2014) and Chown (2014). Similarly, when Simon talks of alternatives to seeing ‘special interests’ as a symptom of disorder, it is a shame that she did not engage with the work of Mike Lesser, Dinah Murray and Wenn Lawson (Lawson 2008, 2010; Murray 1992; Murray, Lesser, and Lawson 2005), or that there may be an issue with calling such interests ‘special’. The chapter by McGuire along with that of Hodge are perhaps the most respectful and interesting of the collection, but these can be contrasted by others which misconstrue the arguments being presented:

Neurodiversity relies on the discourses of medical pathology … this difference, while not disordered, is real and biologically based. Both social model theory and the neurodiversity movement fail to trouble the construction of autism as a coherent, biomedical category, a diagnosable condition, a reality, a brute fact. And that for me is where their limitations lie. (24)

A number of chapter authors within the collection seem to be under the impression that a diagnosis of autism is meant to be scientifically valid as a natural kind, rather than a clinical diagnostic signposting category based on behavioural observations and misconstrued as reified fact by professionals. Whilst there are many scientists searching for an autism biomarker ‘Holy Grail’, there are also many commentators from a number of fields who would suggest that one is unlikely ever to find such a simplistic explanation of what autism ‘is’ at a biological level. Whilst one cannot say that there are consistent biomarkers for autism as compared with those who are not autistic, saying there is no explanatory value to the concept is, at the very least, debatable. This collection is a rather disappointing continuation of past mistakes (Jaarsma and Welin 2012; Runswick-Cole 2014; Timimi, Gardner, and McCabe 2011), such as the exclusion of critical theorists who identify or who have been identified as autistic, and the simplistic mischaracterisation of the neurodiversity paradigm (in all its variations).

In future, if such collections are to be published, it would be preferable to include leading autistic scholars working in this field. It may also be opportune to invite a conversation with those whose views one opposes from a biomedical perspective as well. For the field of autism studies as a whole to move forward, perhaps it is critical interdisciplinary theorising and practice – as championed by projects begun by autistic people such as the Autonomy journal (Arnold 2012), the Theorising Autism Project (Greenstein 2014) and the Participatory Autism Research Collective (PARC) – that are most needed?

Damian Milton
School of Law and Social Sciences/Centre for Education and School Partnerships, London South Bank University, London, UK
[email protected]
© 2016 Damian Milton
http://dx.doi.org/10.1080/09687599.2016.1221666