Is autism just another identity?

ESSAY: With so many people being added to the ‘autism spectrum’, a disorder is being transformed into a lifestyle.

Sandy Starr

Topics Politics

This is the text of a speech that was given at the conference ‘Autism, Ethics and the Good Life’, held at the Royal Society in London on 2 April 2012 (World Autism Awareness Day).

Is autism a disorder? Is autism an identity? If you had asked me these questions a few years ago, before I became involved with the Autism Ethics Group at King’s College London, then my answer would have been a clear ‘yes’ and ‘no’ respectively. Clearly, autism is most usefully understood as a disorder. And clearly, it is not useful to understand autism as an identity.

If you were to ask me the same two questions today, then I would say exactly the same thing.

My involvement in the Autism Ethics Group hasn’t changed my views in that respect. What it has done, however, is make me realise that people who share my views of autism are somewhat on the back foot at the moment, in autism advocacy and campaigning circles and in broader debate and discussion. I’d like to look at why that is, what it means, and what the consequences might be.

I am interested in autism for three main reasons:

  • Professionally, I’m interested in autism because I work for the Progress Educational Trust, a charity that deals with the fields of genetics, assisted conception and embryo/stem cell research – genetic and epigenetic aspects of autism, and the reproductive choices available to people with autism, come within the charity’s remit.
  • Politically, I’m interested in autism because debates about it encapsulate several significant political trends, including the role played by medical concepts in everyday life and the increasing prominence of the politics of disability and identity.
  • Personally, I’m interested in autism because I was given a diagnosis of Asperger’s syndrome (so-called ‘high-functioning’ autism) when I was a teenager.

I think it’s fair to say that from any of these three perspectives, the notion that autism is not a disorder would once have seemed bizarre. The whole concept of autism originates in psychopathology. Hans Asperger (after whom Asperger’s syndrome is named) talked about ‘autistic psychopathy’. Autism is found in the Diagnostic and Statistical Manual of Mental Disorders (DSM). And yet we now seem uneasy about the characterisation of autism as a disorder. Why?

For one thing, a disorder implies a lack of normal or typical function. The increasing numbers of people who are thought to warrant a diagnosis of either ‘classical’ autism, atypical autism or Asperger’s syndrome is now of a scale sufficient to make one ask whether autism is, in fact, exceptional. Only last month, there were newspaper headlines about the fact that about one per cent of schoolchildren in the UK are now recorded as having some kind of autistic spectrum disorder (double the figure from only five years previously). This was followed by the news that according to a new study by the Centres for Disease Control and Prevention, one in 88 children in the USA now have an autistic spectrum disorder (again, almost double the figure from five years previously).

We can speculate about the reasons for this recent upsurge, but, in order to understand it, I think it’s necessary to go back a little further and look at the broadening of autism through the concept of the ‘autism spectrum’, which is what has made it possible for autism to encompass high-functioning individuals such as myself. I think the potential for an unimpeded expansion of the category of autism, of the sort we are now seeing, may have already been there when autism was first conceptualised in the 1940s. It was certainly there once the notion of the ‘spectrum’ was introduced into psychiatry at the end of the 1960s.

I would argue that the category of autism has become less coherent, and consequently less meaningful and less useful, as a result of its expansion. And I think the osmosis into informal discourse and pop culture of clinical terminology about autism has further undermined the category’s coherence. This has led to a situation where the ‘spectrum’ – once a categorical means of bringing together low- and high-functioning individuals who (arguably) have some features in common – is now routinely used to mean an uninterrupted continuum, ranging all the way from the pathological to the normal.

The conceptual incoherence of autism today

A particularly unhelpful consequence of this has been the blurring of the distinction between three types of people: people who cannot function independently in society, including those with severe learning difficulties; people who take longer to learn how to function independently in society or who are more easily thrown by the difficult or the unexpected than the average person; and people who are simply dealing on their own terms with the vagaries and vicissitudes of everyday life, as best they can. (The final category, incidentally, describes just about all of humanity.)

One reason why it has become more difficult to make such distinctions is because of a loss of consensus as to what makes a functioning social being. Without such a consensus, it is difficult to know when somebody’s problems are exceptional, warranting formal diagnosis. Nor is there much of a consensus nowadays about what is reasonable for society to expect of its functioning members.

I am not suggesting there was ever much of a baldly stated consensus, or formal concordat, about what a functioning person is. On the contrary, it was more a tacit understanding. But norms that have developed during the past two centuries around the transition from childhood to adulthood, and around the expectation that society’s adult members are largely autonomous, independent and economically productive people, have indicated some sort of broad agreement. The way that a diagnostic category like autism can now come to straddle both the pathological and the normal suggests a fraying of this broad agreement.

I’m sure some people who now have a diagnosis of Asperger’s syndrome may have had a miserable time trying to meet the expectations of society in an earlier era, and may thankfully be spared some of that grief now. While saying that, however, if one is granted some reprieve from the expectations of society then one risks underestimating one’s capacity to meet those expectations. In any event, I’m sure that certain benefits accrue from the expansion of diagnostic categories. But I’m equally certain that these benefits come at a price, and I’m worried that the price may be steep.

For example, welfare policy and provision is currently undergoing significant changes in the UK, and this has led to considerable anxiety about who does and does not qualify for state-provided disability benefits. The Welfare Reform Act was passed last month, and the prelude to this legislation has been the government subjecting people on disability benefits to Work Capability Assessments (WCAs) over the past two years. These assessments have been outsourced to the private firm Atos Healthcare.

WCAs are a fairly crude checklist exercise, to say the least. And while it can be hard to sift critically through the outcry that WCAs have prompted, I have little doubt that these assessments have had a brutal and arbitrary impact on at least some very physiologically and psychologically debilitated people, who have been declared ineligible for benefits despite being manifestly incapable of doing a regular job of work. Some of the more egregious examples of this have been widely reported – for instance, people who have impaired vision or mobility or no vision or mobility, who are terminally ill and don’t have long to live, or various combinations of the above, being declared fit to work.

One can criticise government policy for this situation, and that is legitimate up to a point. But what has gone largely unremarked upon is the fact that such measures also constitute the price we pay for a loss of coherence in our medical concepts and terminology.

In a beleaguered economy, surely it’s unsurprising that the state – faced with a medical profession and a broader culture that makes increasingly promiscuous use of diagnostic categories, such that a significant proportion of the population is technically ill – is going to withdraw from clinicians the power to make judgements about who is and is not entitled to benefits. And surely it is unsurprising that in the absence of any more coherent and trusted process, the state is going to bring in crass and inhumane methods of allocating disability benefits instead.

That it has come to this is not just an indictment of the government. It is actually an indictment of all of us, and of the fact that we have wilfully lost our grip on what it means to have a disorder.

We have a situation today where many people in polite society go out of their way to avoid using the term ‘disorder’ in relation to autism, and instead use the euphemism ‘condition’. This is a bit like the way we often default to the term ‘partner’ for someone’s other half, instead of referring to their husband, wife, boyfriend, girlfriend, lover or fancy man. By implicitly treating all romantic, sexual and domestic arrangements as equally valid, casual use of the term ‘partner’ sends out a subtle signal that by using it one is a good sort.

The same thing is true of calling autism a ‘condition’ instead of a ‘disorder’ – it seems like a nice thing to do, and, like saying ‘please’ and ‘thank you’, it doesn’t seem to cost us anything. But maybe it does cost us something. Maybe what it costs us is sense.

Reclaiming autism as a disorder

I think the reason we are often reluctant to call autism a disorder is because ‘disorder’ is a pejorative word – there is order, and then there is something that falls short of order. Likewise, pathology as a whole is a field that involves pejorative medical judgement. It’s the discipline of finding out what’s wrong with you. This fact seems to cause great vexation nowadays.

Yet, having something wrong with your health is not the same thing as having something wrong with you as a person. In other words, medical and moral judgement are separable. The problem of stigma actually arises not, as is sometimes thought, from the exercise of pejorative medical judgement, but rather from a failure to distinguish and understand medical and moral judgement.

One useful way to think about this is the concept of ‘ipseity’, which means that which makes you, you – that which is essentially you. Ideally, we should seek to distinguish our health from our ipseity. We amount to considerably more than our health, and our health – while undoubtedly important, in that it enables us to live and act in the world – is, ideally, incidental to our intrinsic qualities.

This becomes a harder case to make with psychological health than it is with physiological health, and it becomes harder still in relation to autism. This is because social dynamics – relationships between ourselves and others, and all that these relationships involve – are a crucial part of our ipseity. Indeed, social dynamics are an indispensible part of consciousness as I understand it.

Autism, according to traditional accounts, has a profound effect upon a person’s sociality – their ability to relate to others. The ‘aut’ in ‘autism’ comes from the Greek word for ‘self’, and the word ‘autism’ conveys a tendency towards introversion and attenuated relationships with others (at least in classically autistic people). Can one separate such characteristics from a person’s ipseity? Should one attempt to?

Dr Michael Fitzpatrick’s book Defeating Autism: A Damaging Delusion draws upon a wide-ranging set of examples to illustrate that treating a person’s autism as entirely separable from their essential self can be a road to perdition. Such an outlook can have irrational and dehumanising consequences, with some parents of autistic children labouring under the misapprehension that if only their child’s autism could somehow be stripped away or extracted, a more genuine child could be found buried underneath. It’s very important not to succumb to this misguided and dangerous fallacy.

That said, I think it’s precisely because humanity and consciousness are predicated on social dynamics and reciprocal relationships, that we can and should accommodate the minority for whom such reciprocity is difficult or impossible. The majority’s capacity for sociality is precisely what gives society as a whole the latitude to distinguish medical judgement of functioning from moral judgement of character, and indeed to suspend moral judgement altogether where necessary.

If a person’s functioning is so circumscribed by autistic impairments that they lack the capacity to act and live independently, then a pejorative moral judgement is clearly inappropriate and unhelpful, while a pejorative medical judgement is clearly necessary in order to understand the nature of the relevant impairments and what (if anything) can be done to mitigate them. If, on the other hand, there is greater scope for a person with autism to be independent, and if their impairments are not insurmountable, then a relationship between medical judgement of their functioning and moral judgement of their character will need to be negotiated.

This negotiation will vary according to the individual and their circumstances, and is far from being straightforward or easy. Whether or not it succeeds rests ultimately on the quality of good faith – of having generous but also realistic expectations both of ourselves and of others. With sufficient good faith, the qualities of compassion and robustness of judgement – which are often mischaracterised as antithetical – actually become complementary.

For these reasons, I take issue with anyone who suggests that to characterise autism as a disorder is to lack compassion or to promote stigma. If you are going to say that someone has autism, and if this statement is to convey anything meaningful and useful, then, in my view, the logical corollary of this is to say that the person in question has a disorder. Conversely, if you are going to say that it is completely inappropriate to describe someone as having a disorder, then you are saying that they do not have autism.

Re-establishing this sort of frankness and clarity, underpinned by good faith, is an important task. And it is all the more important given the extent to which autism is a fragile conceptual edifice, weakened by its latter-day loss of coherence and liable to be further weakened by next year’s new edition of the DSM. The latter proposes to formalise what is already informally assumed to exist, by creating a single diagnostic category of ‘autistic spectrum disorder’ conflating autism, Asperger’s syndrome and related disorders.

The fragility of the autism concept is noted by Sami Timimi, Neil Gardner and Brian McCabe in their recent book The Myth of Autism, in which they argue that the entire concept of autism is irredeemably flawed and should be done away with. There’s much I disagree with in the book (not to mention some unfortunate errors of fact), and I am not as eager as the book’s authors to do away with the entire concept of autism at the present time. But the book does make some important points, and I think there’s legitimate scope for a thoroughgoing critique of this sort.

With that in mind, I will modify my statement that autism is a disorder. Instead, I will say if autism is anything, in the context of medicine, then it is a disorder.

Stop treating autism as an identity

This raises the question of whether it is possible to talk about autism outside the context of medicine. In an ideal world, it might be possible to talk about an ‘autistic trait’ one shares with a family member – in the same way as one talks about a shared facial tic or figure of speech – without the need for medicine or pathology to be implicated in the discussion at all. But we do not live in such a world. While autism is the subject of much informal discussion outside a medical context, the medical meaning of autism is nonetheless invoked in these discussions.

One of the reasons for this is that the contingency of diagnostic categories – the fact that they serve a practical purpose, rather than being eternal descriptions of us set down in some heavenly ledger – is rarely appreciated. And when this point is acknowledged, it tends to be used in the service of relativism, to impugn the whole notion of diagnosis. Given such a backdrop, I think our energies are more productively invested in clarifying what autism means medically, than they are in playing parlour games with it.

This brings me back to the question of whether it’s useful or legitimate to think of autism as an identity. I think we already do think about autism as an identity, but I also think that this may not be a good thing.

To illustrate why I think this, I refer you to my earlier statement that I have a diagnosis of Asperger’s syndrome. Now I know, and you know, and you know that I know, that by making such a statement on this subject I do the following three things. I buy myself a bit more latitude to be forthright on the subject. I deflate some of the strategies that could conceivably be used to argue against me. And I help the organisers of this conference deflect any accusation that the speaker line-up is not representative of relevant interests.

What I am describing here is far from being a politically healthy situation. It’s a situation where if you establish your identity credentials with a declarative personal statement, you earn tolerance and goodwill from the people you’re talking to. And if you fail to establish such credentials, you’re more likely to be met with intolerance and bad will and find yourself accused of the great heresy of our times, namely speaking from a position of privilege. In other words, the merits of your identity take logical priority over the merits of your ideas.

To discuss autism (or anything else) in such terms is to build the ad hominem fallacy into the discussion from the outset. The most well-known manifestation of this fallacy is undue criticism, when one plays the man instead of playing the ball during the course of a debate. But the same fallacy is also in operation when one’s ideas are unduly lauded because of one’s identity.

The divisive premise of identity politics, in autism as elsewhere, is that in order to legitimately represent someone else’s interests one’s characteristics have to reflect the other person’s characteristics. And I do not think that premise is true. I think there is more in common between all of the people I am currently speaking to – and between human beings in general – than there is difference.

For all that distinguishes people as eligible for a diagnosis of autism or Asperger’s syndrome (or doesn’t distinguish them, given how common the diagnosis has become), I think there is more in common between people who have autism and people who do not than we sometimes acknowledge. This is not due to there being a bit of autism in most of us, as is sometimes suggested. Rather, this is due to there being a lot of human in all of us.

Sandy Starr is communications officer at the Progress Educational Trust and webmaster of its publication BioNews.

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Topics Politics


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