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From autism to Asperger's syndrome

23 October 2009
By Sandy Starr
Communications Officer, Progress Educational Trust
Appeared in BioNews 531
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.

11 May 2010 - by Dr Alex Dedman 
Autism and Asperger Syndrome (The Facts) is a welcome update of its predecessor, the singularly named Autism which was first published by Simon Baron-Cohen in 1993. The expanded title of this new edition speaks volumes about just how far the field has moved forward since publication of the first book...
26 April 2010 - by Dr Tom Dickins and Sima Sandhu 
The models emerging from behavioural biology are increasingly sophisticated. They do not undermine the quest for candidate genes, but rather augment our understanding of why those genes might persist in populations and be differentially expressed across circumstances....
13 April 2010 - by Ruth Pidsley 
The Imprinted Brain sets out a startling new theory that could reshape the way we think about the human brain...
6 April 2010 - by Professor Derek Bolton 
Genetics has made enormous advances towards understanding the causes of medical and psychiatric conditions. We know from the past few decades of research that many common psychiatric conditions have some contribution from genes, ranging from modest (30 to 40 per cent) to high (over 60 per cent). Moving on from this general finding, two questions dominate current research...
22 March 2010 - by Dr Charlotte Maden 
New research into diagnostic genetic tests for autism spectrum disorders (ASDs) has revealed the effectiveness of a new test that is currently not used in the first line of diagnosis. The findings were published online last week in the journal Paediatrics....
18 October 2009 - by Dr Marianne Kennedy 
A large genetic study has uncovered a single 'letter' change in DNA which is associated with autism. The multi-national collaborative team, who published their findings in Nature, also identified two further regions of the genome which could contain other rarer genetic changes that have an even greater influence on the condition. Coinciding with these discoveries and publishing their findings in the Proceedings of the National Academy of Sciences, a team led by Pro...
12 October 2009 - by Dr Elisabeth Hill 
Most of us are familiar in some way or another with autism spectrum disorder (ASD). We have seen news reports, watched films or documentaries trying to explain this puzzling condition and showing examples of a child's unusual social, communication and repetitive behaviours. We may know a child with ASD or have a child with ASD. Recent evidence suggests that about one per cent of the entire population (one in 100 people) fall somewhere on the spectrum (1,2). Whilst we still understand relative...
5 October 2009 - by Professor Simon Baron-Cohen 
Autism and Asperger Syndrome are two subgroups on the autistic spectrum. They both share difficulties in social relationships and in communication, alongside the presence of unusually narrow interests and a strong preference for predictability. They are neurological and, as we now realise, strongly (though not 100 per cent) genetic. These two subgroups are differentiated by the presence of language delay and/or learning difficulties in autism, and by the absence of these in Asperger Sy
21 September 2009 - by Professor Richard Ashcroft 
Autism spectrum disorder (ASD) is rarely far from the news. ASD is a complex, and as yet poorly understood, pervasive developmental disorder. People with ASD display a triad of impairments in social communication, social interaction, and social imagination (1). The impact of these impairments on children and adults with ASD, and on their families, can vary enormously. However, a common reaction to ASD is fear: fear that my child may develop ASD; fear that my child with ASD will suffer;
21 September 2009 - by Dr Michael Fitzpatrick 
The early narrow definition of autism emerged out of the psychiatry of the pre-war years and became widely accepted in the post-war decades. While research revealed a substantial genetic contribution to autism, in the late twentieth century there was an upsurge in the diagnosis of autism, particularly among 'higher functioning' individuals, and the concept of the 'autistic spectrum' became established....
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