From autism to Asperger's syndrome
By Sandy Starr (Communications Officer at the Progress Educational Trust)
This article forms part of a School Resource Pack created by the Progress Educational Trust (PET) as part of its project Spectrum of Opinion: Genes. The article incorporates links to an accompanying Glossary of terms, and is followed by a list of 10 key words, phrases and names and a set of Questions to consider. A more extensive version of the article can be found on PET's BioNews website.
The Progress Educational Trust debate 'From Autism to Asperger's: Disentangling the Genetics and Sociology of the Autism Spectrum' took place in the UK Houses of Parliament on the evening of 20 October 2009. The debate was chaired by Jeremy Turk (Professor of Developmental Psychiatry at King's College London).
The first speaker was Simon Baron-Cohen (Professor of Developmental Psychopathology at the University of Cambridge). He began by breaking the autismspectrum down into its two major subgroups: classical autism (or Kanner's syndrome) and high-functioning autism (or Asperger's syndrome). He then said that autism used to be a subject that few people discussed, with autistic people and their carers feeling that they were struggling invisibly, but that the condition is now being discussed in the most prominent places.
Professor Baron-Cohen went on to observe that we can now say with great confidence, based on evidence from twin studies and molecular biology, that autism has a partial (but not entirely) genetic basis. That said, 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. This means that a prenatal genetic test for autism is not, and may never be, possible. But Professor Baron-Cohen argued that it is still important to debate the ethics of such a test, in case one should ever be developed.
The second speaker was Dr Elisabeth Hill (Senior Lecturer in Psychology at Goldsmiths University of London). She agreed with Professor Baron-Cohen that autism now has great public prominence, but argued that the fact it is a lifelong condition is is not widely appreciated. Autistic children grow up to be autistic adults with their own concerns and needs, and the transition from childhood to adulthood can be difficult and uncertain for autistic people.
The third speaker was Dr Michael Fitzpatrick (General Practitioner and author of books about autism). He argued that it is necessary to move beyond thinking about 'cause and cure' in relation to autism, because while work on finding causes and cures is important, it is often misleadingly reported and interpreted. He also argued that such work is unlikely to produce anything of use to today's autistic people and their carers within their lifespan.
Like Professor Baron-Cohen, Dr Fitzpatrick was critical of ideas about autism that belittle the humanity of autistic people. Nonetheless, Dr Fitzpatrick disagreed with Professor Baron-Cohen's concern that genetic research into autism could lead to eugenics. Furthermore, Dr Fitzpatrick argued that discussing the ethics of a genetic test that does not yet exist is an unhelpful distraction.
Members of the audience exchanged a variety of opinions about the usefulness of considering genetic tests that do not as yet exist. One audience member argued that debating such matters is never a bad thing. Another said that there was much ethical debate prior to the worst injustices of the Second World War, but that this debate did not prevent those injustices, because the ethics of that historical era were different to the ethics of today.
The speakers were asked for their views on the neurodiversity movement, which characterises different modes of cognition and behaviour in terms of difference rather than disorder. Dr Fitzpatrick replied that while he sympathised with the movement, he was sceptical of the reductionist tendency to define people in terms of their 'wiring'.
Professor Turk, chairing the debate, asked about the socialmodel of disability. According to this model, disability is not the result of people's biology, but the result of a failure to meet people's needs. Dr Fitzpatrick argued that when this way of thinking denies the existence of real impairments, it becomes irrational.
10 key words and phrases
Given that autism is only partially genetic, is it a good use of scientists' time and money to look for autism genes?
Many people argue that we need to be more flexible in the way we understand autism. If our understanding of autism becomes more flexible, does autism become more difficult to understand?
According to the idea of neurodiversity, autistic ways of thinking are different but not necessarily disordered. Is there any contradiction between this argument, and the argument that people with autism need and deserve special support?