From autism to Asperger's syndrome

The Progress Educational Trust (PET) debate 'From Autism to Asperger's: Disentangling the Genetics and Sociology of the Autistic Spectrum' took place in the UK Houses of Parliament on the evening of 20 October 2009, two days before the Autism Bill received its third and final reading in the House of Lords.

This event marked the launch of the broader PET project 'Spectrum of Opinion: Genes, Autism and Psychological Spectrum Disorders', supported by the Wellcome Trust. The debate was organised with the support of Dr Evan Harris (Liberal Democrat MP for Oxford West and Abingdon) and was chaired by Jeremy Turk (Professor of Developmental Psychiatry at the Institute of Psychiatry and at St George's University of London). The audience included a party of students and teachers from Robert Napier School in Gillingham, who in 2010 will be piloting use of a resource pack developed by PET.

The first speaker at the debate was Simon Baron-Cohen (Professor of Developmental Psychopathology and Director of the Autism Research Centre at the University of Cambridge), a major inspiration for the 'Spectrum of Opinion' project, which was conceived as a response to his call for more informed public debate following a media furore earlier this year about the prospect of genetic testing for autism. He began by breaking the autism spectrum down into its two major subgroups, classical autism (or Kanner's syndrome) and high-functioning autism (or Asperger's syndrome). He then observed that whereas autism used to have a low profile, with autistic people and their carers feeling that they were struggling invisibly, the condition is now being discussed in the most prominent places (as the success of the Autism Bill attests).

He went on to observe that we can now say with great confidence, based on the results of twin studies and molecular studies, that autism has a partial (but not entirely) genetic basis. That said, there is a lack of specificity about this known genetic basis, inasmuch as there is no single gene that can predict the development of autism in an individual, and the genes connected with autism are not necessarily pathological but also include common variants. One upshot of this is that a prenatal genetic test for autism is not (and may never be) feasible, but Professor Baron-Cohen argued that it is nonetheless important to debate the ethics of such a test, in case one should ever be developed. In his view, genetic research into autism has the potential to be applied in both positive and negative ways, and it is important to anticipate and avoid the latter.

The second speaker was Dr Elisabeth Hill (Senior Lecturer in Psychology at Goldsmiths University of London). She argued that while autism has become ever more prominent, we have yet to come to terms with the fact that it is a lifelong condition - that is, autistic children grow up to be autistic adults with distinct concerns and needs. Despite this, it remains the case that the transition from childhood to adulthood is, for autistic people, marked by uncertainty surrounding the provision of services and a lack of funding for relevant research.

Dr Hill discussed an initiative she co founded to address this situation, the Autism and Employment Study, which has found that adults with an autistic spectrum condition find it difficult to find and maintain employment. She mentioned other initiatives that are drawing attention to the plight of autistic adults, including the Autism Bill and the 'I Exist' campaign initiated by the UK's National Autistic Society. And she criticised the lack of flexibility that surrounds consideration of autism in relation to other conditions and problems, with autistic people sometimes told that they either must have or cannot have certain conditions or characteristics, when this is not necessarily true.

The third speaker was Dr Michael Fitzpatrick (General Practitioner and author). He argued in his introduction that it is necessary to move beyond the paradigm of 'cause and cure' in relation to autism, because while ongoing work on finding causes and cures is important, it is often misleadingly interpreted and is unlikely to yield anything of practical utility in the lifetimes of today's autistic people and their carers. He observed that whereas genetic insights into autism have absolved parents of autistic children of guilt, caused by early theories attributing the condition to poor parenting, new forms of guilt have arisen around the genetic transmission of the condition.

Having asserted that genetic research into autism has yielded little in the way of practical insights, Dr Fitzpatrick then argued that environmental research into autism has yielded even less, the last environmental contributor to autism having been identified over 20 years ago. While he shared Professor Baron-Cohen's rejection of disparaging and dehumanising characterisations of autism, he questioned the suggestion that there is a risk of genetic research into autism being used in pursuit of eugenics. In Dr Fitzpatrick's view, discussing the ethics of hypothetical genetic tests before they exist is an unhelpful distraction. He argued that in drawing attention to the benefits (rather than detriments) of autistic members of the population, those who advocate the interests of autistic people ironically risk advocating a eugenic perspective themselves, albeit in mirror-image form.

Like Professor Baron-Cohen and Dr Fitzpatrick, the audience was divided on the merits and demerits of ethical debate about hypothetical scenarios. One audience member argued that such debate was never a bad thing. Another, by contrast, objected to the presumption that there will be dire consequences if science and medicine develop unimpeded. Still another observed that there was no end of ethical debate prior to the worst injustices of the Second World War, but that this did not in itself avert those injustices, because the ethics of the era emerged from a historically specific worldview. Professor Baron-Cohen responded that in spite of all this, he still thought it important to 'raise the spectre' of genetic research into autism having bad consequences.

Asked by an audience member for his views on the neurodiversity movement, which seeks to characterise different modes of cognition and behaviour in terms of non-pejorative difference rather than disorder, Dr Fitzpatrick replied that he sympathised with the movement but was sceptical of the reductionist tendency to define people in terms of their 'wiring'. Similarly, when the chair Professor Turk discussed the social model of disability, which defines disability as a property of society's failure to meet people's needs rather than a property of people's biology, Dr Fitzpatrick argued that this perspective becomes irrational when it denies impairments that clearly have an objective existence.

Dr Hill urged us to reconsider established dichotomies of 'nature vs nurture' or 'genetics vs environment' when addressing autism, and discussed the dialectical relationship between physiology and environment that can result in marked cognitive differences not just between monozygotic twins, but between monozygotic twins in the same household or setting. The key biological mechanisms involved in this dialectic fall under the auspices of epigenetics, and will be addressed before a mixed lay and specialist audience for the first time on Wednesday 18 November 2009 at PET's annual conference Does Genetics Matter? Help.