Genetics and autism: untangling the debate
By Richard Ashcroft (Professor of Bioethics at Queen Mary University of London)
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.
Autism spectrum disorder - a complex, and as yet poorly understood, pervasivedevelopmentaldisorder - is rarely far from the news. People with autism spectrum disorder display a triad of impairments in socialcommunication, social interaction, and social imagination.
The impact of these impairments on children and adults with autism spectrum disorder, and on their families, can vary enormously. However, a common reaction to autism spectrum disorder is fear: fear that your child may develop the condition; fear that your child with the condition will suffer; fear that what you do to your child may cause the condition; fear of people with the condition.
Much of the fear of autism spectrum disorder comes from fear of people who are strange or unusual, and who don't interact with 'us' in the 'normal' ways. Some of the fear is irrational, but some of it is quite rational - for example, fear that a child with autism spectrum disorder will be bullied, or neglected, or not receive the social and educational support that they need and deserve.
Because autism spectrum disorder is so diverse in how it affects people - in terms of the impairments they have, and in terms of the severity of those impairments - if we had a better model of the condition, we could get a better model of how people with it develop differently from people who are neurotypical. It is also possible that autism spectrum disorder as we currently understand it is in fact a family of related disorders, with different causes.
Geneticresearch could help with diagnosing autism spectrum disorder. If we could understand the genetics of the condition and therefore the biochemicalpathways involved, we may also be able to develop treatments which modify its development. We could improve our understanding of the riskfactors which make it more or less likely that someone will have a child with autism spectrum disorder, and this could inform reproductive decisions.
All of this is controversial. Any genetic research into behaviour faces charges of reductionism. And any genetic research in the field of disability and impairment faces difficult challenges - the relationship between 'disability' and 'difference', the biomedical and social factors that shape the lives of people with impairments, and the controversy over whether disability should be 'treated' or 'prevented'. Fears of eugenics are never far away.
All of these issues are commonly discussed by people with autism spectrum disorder and by their carers and families. There is also a perception in the autism community that research funds are very limited, and that most of these funds are spent on research into the causes - particularly the genetic causes - of autism spectrum disorder. Many families of autistic people say that these scarce funds should be spent on research into interventions, rather than causes.
Which interventions should be investigated is another topic of controversy. Should there be biomedical treatments to 'cure' autism? Educational interventions to help overcome social impairments? Occupational therapy to overcome the sensory difficulties which commonly affect people with autism spectrum disorder? How you answer these questions depends on what you think autism spectrum disorder really is, whether and how you think it is a problem, and whom you think it is a problem for.
Genetic research clearly has a lot to offer, but we need to understand it in two contexts. First, there is the question of whether genetic research should be prioritised in relation to social, educational and policy research into autism, and in relation to other biomedical research into autism. Second, there is the impact of genetic research - what it is used for, how it is understood by its various users, and how it changes our thinking about autism.
10 key words and phrases
Can autism be cured? Should it be cured?
Is it important to understand what causes autism? Why?
If scientists discover several things that cause autism, should we then divide autism into multiple conditions - one for each cause?