Are we all autistic now?

How can you tell if someone’s not autistic?

This may seem like an odd question, especially if you’re unfamiliar with the world of autism and the families, clinicians and researchers who deal with it. But speaking as someone who’s currently overseeing a project examining the genetics and sociology of autism, and who has experienced autistic traits and related difficulties both in himself (I was diagnosed with Asperger’s syndrome in my teens) and in his family, I believe that this is the most contentious question one can ask about autism today.

It is a question that the National Institute for Health and Clinical Excellence (NICE) is currently wrestling with, following the UK government’s request that NICE ‘develop a clinical guideline in relation to the initial recognition, referral and diagnosis of autism spectrum disorders in children and adolescents’. As NICE points out, ‘the prevalence in children and young people of all disorders in the autism spectrum (which includes autism, Asperger’s syndrome and atypical autism) has risen in the past decade’ and ‘ranges from 60 per 10,000 to more than 100 per 10,000 in the UK’, causing ‘a significant impact on referrals to diagnostic services’ (1). This proportion may yet rise further, as the general trend is to cease to regard autism as an exceptional disorder, and to see it a set of non-pejorative traits that most, if not all, of us possess to some extent.

Elsewhere, the Autism Bill, the UK’s first piece of autism-specific legislation, calls upon the government to devise a ‘strategy for meeting the needs of adults in England with autistic spectrum conditions by improving the provision of relevant services to such adults by local authorities, NHS bodies and NHS foundation trusts’ (2). In the context of a recession, when politicians are arguing about if and how cuts should be made to health, social care and education budgets, new and improved services for one per cent (and rising) of the population may be a tough sell.

The changing understanding of autism

A word of explanation is needed here, for anyone whose familiarity with autism stopped at Rain Man, and who is therefore confused as to how more than one in 100 people can now be thought autistic – particularly if these people can write articles such as this one, or otherwise get by in the world. The category ‘autism’, in both its clinical and its more informal uses, has come to encompass an enormous range of people with impairments in social interaction, communication or imagination. Such impairment can range from a debilitating inability to develop many of the faculties essential to adolescence and adulthood, rendering an individual dependent upon lifelong care, to a mildly awkward inability to observe niceties of behaviour and interaction that others take for granted.

Autism has not always been conceived this broadly. The Austrians Leo Kanner and Hans Asperger, whose pioneering research into the condition laid the groundwork for the way we understand it now, were contemporaries who both did their landmark work in the 1940s. But ‘classical’ autism as conceived by Kanner was for a long time the condition’s best known manifestation, whereas it is only during the past two decades that the syndrome to which Asperger gave his name, and related forms of ‘high-functioning’ autism, have enjoyed wider recognition and prominence.

One of the principal means through which our conception of autism has been broadened is the idea of the ‘spectrum’. Although this term is near-ubiquitous in modern references to autism (and other psychological disorders), it can actually refer to a bewildering number of things. It can describe a range of behaviours, impairments and experiences observed formally in the clinic, or informally in broader society. It can refer to different sequences and permutations of genes, so that one ‘spectrum’ of genotypic factors can contribute to another ‘spectrum’ of phenotypic (cognitive, behavioural and physical) factors. In diagnosis, the term can refer to a related set of distinct categories, or to a continuum within a single category that allows for endless subtleties and variations.

To the layperson, a ‘spectrum’ might suggest variation in a single dimension, but this, too, is misleading. Autism is thought to be composed of a tripartite set of impairments, which may vary independently in different individuals. Additionally, different conditions (for example autism, obsessive-compulsive disorder and attention-deficit hyperactivity disorder) may be overlapping in their causes and/or their effects. Attempts to accommodate these subtleties, such as the modern concept of multiaxial diagnosis, make the labelling of conditions far from straightforward.

The limitations of ‘spectrum’ analysis

Whatever the term ‘spectrum’ means, there is little doubt in my mind that this concept as applied to autism and other disorders has had some positive repercussions. Most notably, it has helped people whose problems defy simplistic description to get access to resources and compassion. But the ‘spectrum’ concept has had negative repercussions, too. Most notably, it has popularised the notion of an uninterrupted continuum ranging from the pathological to the normal, undermining the usefulness of both categories.

This is a contentious thing to say. Questioning ideas which have benefited people with mental health problems will always be controversial, not least because it can easily be construed as an affront to such people. While I am sensitive to this, I also believe that we must not let it deter us from having an open and honest discussion about autism. Sceptical inquiry is not incompatible with good faith and a compassionate outlook, and ideally goes hand-in-hand with these very qualities.

In my view, the key aspect of the ‘spectrum’ that needs to be questioned is the omission of social and historical factors from most accounts of it. Cursory mention is often made, in expert circles, of the ‘biopsychosocial’ constitution of autism and other spectrum disorders. But this tends to be done in a spirit of bolstering one’s multidisciplinary credentials, and has the unhelpful effect of making these disorders appear even more dauntingly complex than they already are.

Inasmuch as anything other than the biology of spectrum disorders gets discussed, it tends to be lumped under the heading of ‘environmental’ factors. This is unfortunate, because unlike the category ‘society’, the category ‘environment’ (in this context generally taken to mean ‘outside of an individual’s body’) fails to do justice to the uniquely human dynamics that result from groups of people being more than just the sum of their constituent individuals. Additionally, the terminology of the environment can all too easily be appropriated by those who would have us believe (without any convincing evidence) that autism can be attributed to toxic agents in vaccines or other products.

Genetics is only a partial answer

Perhaps the main reason why social and historical dynamics rarely get a look-in, when it comes to autism and mental health more broadly, is that they can be messy and challenging to deal with and are likely to conflict with someone’s interests. This contrasts with biological categories, which – for all their intricacy – retain a sense of stability that comes from the inanimate character of the natural sciences. Hence it is common practice now, even in the social sciences, to fall back on such biological categories as a default when addressing mental health. This tendency has only been reinforced by the growing prominence of genetics.

Don’t get me wrong – genetics and the burgeoning field of epigenetics (the study of enduring changes in the pattern of gene activity which don’t involve changes in the sequence of DNA) are important in relation to autism. This is evident from the simple fact that autistic traits can, to some extent, be inherited. It’s the ‘to some extent’ in that previous sentence that is interesting, and that unfortunately tends to be discussed in terms of biology alone. While biological research is crucial, it will never provide the whole answer where the ‘spectrum’ is concerned.

What is currently missing from the picture is a grasp of the respective contribution of physiology and society to one’s mental health. The nature of this contribution is such that a functioning physiology is a necessary but insufficient precondition for a functioning mind. In other words, while it’s obvious that none of us can function properly without a functioning brain, it’s also true that we can all be mentally dysfunctional even if our brains are all working perfectly.

To believe this is not to adhere to some rigid nature/nurture dichotomy (epigenetics stands to reveal many subtle ways in which those categories are interrelated), but rather to recognise that not all impediments to our mental functioning come from our physiology. They may derive from elsewhere, and particularly from society. Furthermore, not all impediments to our mental functioning – wherever they might originate – are insurmountable.

The dangers of parlour-game autism

Evidently, there are pretty stubborn limits to the mental development of severely autistic individuals, whatever medical and social care they receive. As Dr Michael Fitzpatrick argues in his book Defeating Autism: A Damaging Delusion, it is far better for parents of severely autistic children to reconcile themselves to this fact, than it is for them to be distracted by the false hope of junk science and miracle cures (however tempting these may be). But in the case of an individual with high-functioning autism, it is entirely legitimate to propose that social factors might mitigate – or, conversely, exacerbate – the difficulties posed by their autistic traits.

If we accept this, then we finally give the lie to the popular parlour game of diagnosing great historical figures such as Mozart or Einstein with high-functioning autism. Such diagnoses fail to take account of the fact that if these people were born too early to conceive of themselves as autistic (because the disorder had yet to be conceived or named), and if they were sufficiently compos mentis to function at some level in society (to say nothing of composing Don Giovanni or proposing the special theory of relativity), then any autistic traits they may (or may not) have had were inextricably subsumed in their social context. To ascribe autism to these people retrospectively is to disregard both the historical specificity of their circumstances, and the universality of their achievements (which we can all appreciate without first being certified autistic).

As mentioned earlier, I was diagnosed with Asperger’s syndrome in my teens. I have found my Asperger’s diagnosis useful in some contexts, and I know all too well that it’s possible for someone to have psychological difficulties even if they can give a pretty good account of themselves in public. This why I think the ‘spectrum’ concept deserves a nuanced critique, rather than a simplistic repudiation. That said, there is a sense in which the existence of a diagnostic category such as Asperger’s (quite literally) speaks ill of our society.

After all, it’s easy to characterise just about anybody – readers of this article included – as being not quite the full deck of cards, simply because they’re eccentric, highly strung, shy, short-tempered, or in thrall to some bad habit or other. None of these common attributes is (or should be) a clinically defined mental health problem, even if all of them can nowadays become an officially defined problem faster than you can say ‘Diagnostic and Statistical Manual of Mental Disorders’. All of us have our foibles, which means that considering ourselves in isolation will always tend to create an imperfect impression of our mental wellbeing.

But considering ourselves in isolation means omitting an enormous part of what makes us human. Our humanity can only be properly appreciated by considering people in the aggregate, for the simple reason that when human beings live and work together, then (by and large) they can compensate for one another’s shortcomings and achieve important things. This collective functioning – flourishing, even – is a far truer representation of humanity than the myriad ways in which we might be considered individually dysfunctional. We would do well to keep this bigger picture in mind, as we consider autism and how best to address it.

Sandy Starr is communications officer at the Progress Educational Trust (PET). He is speaking at the debate Age of Autism: Rethinking ‘Normal’ in London on Monday 12 October 2009, and is currently overseeing the PET project ‘Spectrum of Opinion: Genes, Autism and Psychological Spectrum Disorders’.

(1) Autism Spectrum Disorders in Children and Young People: Draft Scope (.pdf 43.5KB), National Institute for Health and Clinical Excellence, 9 June 2009

(2) Autism Bill (.pdf 80.5KB), House of Commons, 22 June 2009