07 February 2006

Disabled? Or different?

I started a draft of this post several months ago, but just couldn't quite get my thoughts together on exactly what I wanted to say. This morning I came across Is Asperger’s syndrome/High-Functioning Autism necessarily a disability?, presented by Simon Baron-Cohen in January 2000, which presents the case for viewing AS/HFA as a difference, not as a disability

Here is the abstract [emphasis is mine]:

This article considers whether Asperger Syndrome (AS) or high-functioning autism (HFA) necessarily lead to disability or whether AS/HFA simply lead to 'difference'. It concludes that the term 'difference' in relation to AS/HFA is a more neutral, value-free, and fairer description than terms such as 'impairment', 'deficiency' or 'disability'; that the term 'disability' only applies to the lower functioning cases of autism; but that the term 'disability' may need to be retained for AS/HFA as long as the legal framework only provides financial and other support for individuals with a disability. Two models are summarized which attempt to define in what way individuals with AS/HFA are 'different': the central coherence model, and the folk psychology-folk physics model. The challenge for research is to test the value of such models and to precisely characterise the differences in cognitive style.

We have grown familiar with the idea that autism is a 'psychiatric condition', a 'disorder', a 'disability' or a 'handicap'. Ever since Kanner's description of the 'aloneness' of these children , psychiatry has labelled and categorised them as abnormal, ill, and deficient. Through the changing definitions of autism enshrined in successive editions of both DSM (Diagnostic and Statistical Manual, published by the American Psychiatric Association) or ICD (International Classification of Diseases, published by the World Health Organisation), we have had a single view of autism thrust upon us: an essentially negative view in which children or adults with autism are characterised as 'impaired' .

This article challenges the received view through a subtle but important shift of emphasis. Rather than conceiving of autism as a deficiency, it instead considers if autism might be better characterised as a different cognitive style. This important idea can be traced to Uta Frith's book , and has been recently discussed in relation to 'central coherence' theory , but deserves a fuller discussion because of the massive implications of this shift of emphasis. Using the term 'different' rather than 'deficient' may seem unimportant (after all, both words begin with 'd', end in 't' and have 7 letters in between). But this small shift could mean the difference between whether the diagnosis of autism is received as a family tragedy, akin to being told that the child has some other severe, life-long illness like diabetes or haemophilia, or whether the diagnosis of autism is received as interesting information, akin to being told that the child is right or left-handed. In this millennium special issue of Development and Psychopathology, the intention is to highlight this as an issue for the agenda.
And the summary:
In a world where individuals are all expected to be social, people with AS/HFA are seen as disabled. The implication is that if environmental expectations change, or in a different environment, they may not necessarily be seen as disabled. As we have known in relation to other conditions, concepts of disability and handicap are relative to particular environments, both cultural and biological . It may be time to extend this way of thinking to the field of AS/HFA. We could imagine, for example, people with AS/HFA might not necessarily be disabled in an environment in which they can exert greater control of events. The social world is very hard to control, whilst the technological world of machines is in principle highly controllable. Equally, people with AS/HFA might not necessarily be disabled in an environment in which an exact mind, attracted to detecting small details, is an advantage. In the social world there is no great benefit to such a precise eye for detail, but in the world of maths, computing, cataloguing, music, linguistics, craft, engineering or science, such an eye for detail can lead to success rather than disability. In the world of business, for example, a mathematical bent for estimating risk and profit, together with a relative lack of concern for the emotional states of one's employees or rivals, can mean unbounded opportunities.

It is hoped that this article, at the dawn of the new millennium, will open the debate towards identifying if there are any arguments for necessarily viewing AS/HFA as disabilities. In this article, none are found to apply persuasively to AS/HFA, even if they may apply to the 'lower-functioning' cases. In contrast, the arguments in favour of viewing AS/HFA as a 'difference' are more compatible with the 'continuum' notion, and may be morally more defensible. The sole reason for retaining the term disability in relation to AS/HFA may be to ensure access to provision; it may be the legal system that needs revision, so that a child whose autistic 'difference' leads them to have special needs, will still receive special support.
I encourage everyone to read the full article.

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