Making up people

The late Ian Hacking, Professor of Philosophy at the University of Toronto and Chair of Philosophy and History of Scientific Concepts at the Collège de France, came to be interested in autism through a more general interest in the process and consequences of generating classes or categories of people. Hacking called such categorisation ‘making up people’, ^{Reference Hacking3} and recognised it as a dynamic process involving an interaction between those included in or closely affected by a classification (including, for example, family) and the experts or professionals, institutions and practices involved in what he called driving the engines of discovery.

Although the initial elements of the process of classification would be familiar to anybody who follows clinical or applied health research, something more complicated emerges as a result of naming people in a category. Because people are inclined to make a response to being categorised, Hacking called them ‘interactive kinds’, and he used the term ‘looping effect’ to describe the iterative way that naming people in a category can change the people in that category and the defining features of the category. He was clear that all this was compatible with people in the category having a disorder that has a biological basis. It is the idea of what kind of people are being classified, the how and why they are grouped together, that leads to the make-up of the group.

Making up autism

Having touched on autism in an earlier book, ^{Reference Hacking4} Hacking devoted two lectures ^{Reference Hacking5} to autism in the inaugural series he gave on appointment to his Chair at the Collège de France in 2005. In a later interview, ^{Reference Hacking6} he said that he thought that some current ways of thinking about autism were a perfect example of making up people. Two topics in particular were the focus of his interest. One was the role of looping effects in expanding and changing the nature of the group regarded as autistic, and the interactions that most obviously constituted those looping effects. The other was the nature and meaning of cultural representations of autism. It is worth noting that Hacking was writing at a time when the quoted prevalence was less than half what it is now, when autism in girls was considered a rarity, and before the emergence of ideas like masking and autistic burnout.

One facet of the looping effect in autism was related to advocacy and Hacking, writing two decades ago ^{Reference Hacking7} felt able to say that ‘autism has become an advocacy disorder, which contributes to the increased rate of diagnosis’. He noted that autism is, among other things, a ‘bureaucratic concept used in the administration and management of awkward school children’, and that in some ways, advocacy was aimed at pressing for improvements in the bureaucracy with better services and more research for a hitherto neglected and unglamorous disorder. On the other hand, a different sort of advocacy or lobbying for autism described it not as a disorder or anomaly, but as a difference, not to be pathologized and not to be the focus of efforts at treatment or normalisation. Hacking saw this as an example of the tenth or final step in making up people, what he called resistance or reclaiming an identity, drawing an analogy with the campaign against the pathologizing of homosexuality.

Hacking noted, as part of the looping effect, the emergence of autobiographical accounts of recovery from autism, which he saw as leading to the idea of high-functioning autism. Because of the emergence and development of this idea, it was evident at the time Hacking was writing that the autism described by some advocacy groups bore little relation to that described by Kanner and Asperger.

An unhelpful professional contribution came with the idea of the autistic spectrum. Apart from its weakness as a metaphor, the spectrum notion came with an essentialising assumption that everybody identified by the presence of any feature regarded as autistic must necessarily share some fundamental features. This is most unlikely to be true given that it remains unclear if autism is a single anomaly, a family of anomalies or several distinct and independent anomalies. Hacking therefore preferred the idea of an autistic space or manifold, ^{Reference Hacking4,Reference Hacking6} within which it was possible to place people who had any characteristic regarded as autistic. There was no need to assume an underlying relationship (causal or pathophysiological) between all those in the space, nor to assume that those with little or no disability and those more incapacitated had the same disorder and were simply on a continuum of severity.

Besides looping effects, Hacking was interested in wider representations of autism, particularly in autistic autobiography ^{Reference Hacking8} and in the representation of autism in fiction. ^{Reference Hacking9} He was unconvinced that they represented the nature of autism, but was intrigued by what he saw as emerging ways of talking about autism – especially in an era when social communication was being transformed by the internet. These ideas are beyond the scope of this article, but they caution us against accepting too readily that we understand the nature or experience of autism simply by consulting such sources.

Neurodiversity and the overdiagnosis debate

Hacking’s major contribution in the present context is to remind us to distinguish between diagnostic categories that are descriptions of pathological disorders and those that are descriptions of people. And for the second group he offers a description of the looping effects that contribute to changing ideas about what constitutes that particular class or category of people sometimes called autists.

For our present purposes, looping effects have had such a profound impact that we are no longer clear what we are talking about when we talk about autism. A striking example comes from a letter published recently in a UK national newspaper. ¹⁰ The correspondent writes:

Any classification is likely to be motivated by its extra-theoretical uses, and if an important function of the category of autism is to inform the best approach to designing (what Hacking called) bureaucratic responses, then we are bound to be defeated by this degree of uncertainty about the nature of group membership – a substantial source of the difficulty in discussing solutions to the challenge of increasing diagnosis.

Looping is a two-way street, but apart from introducing the idea of a spectrum, Hacking had little to say on the contribution of experts or professionals in redefining autism. ^{Reference Eccles, Weir, Santhouse and Brugha11} Nonetheless, the implicitly raised question hangs there, and it is not difficult to see it answered (even without reference to Hacking) in remarks such as those recently made by Uta Frith ^{Reference Arniss12} about the over-ready acceptance of ideas like masking/camouflaging and associated autistic burnout. In other settings there was an important top-down influence in defining and redefining certain categories of people. Hacking was obliquely disparaging about some of the experts he encountered in the area of multiple personality disorder, ^{Reference Hacking6} which he regarded as a transient illness – meaning one that existed only for the epoch in which it was fashionable. Writing more than 30 years ago ^{Reference Hacking13} about ‘the fashionable attention deficit disorder of childhood’, he said:

The idea of an autistic spectrum has contributed to the changing conceptualisation of autism. Hacking did not think of autism as a transient illness, but he suggested that the spectrum metaphor clouded thinking about the nature and causes of autism, and he was worried that it may be actively harmful by leading to unnecessary diagnosis. Speaking not as a philosopher, but in a personal capacity. ^{Reference Hacking6} Hacking said: