Autism wars are stifling research
The suspension of a major autism research programme based at Cambridge University in response to a campaign directed against Professor Sir Simon Baroncohen, its lead researcher, has caused some alarm in the world of autism. Over the past 30 years, Sir Simon has established a worldwide reputation as a scientist, clinician and author.
The Spectrum 10k project aims to collect saliva samples from 10,000 people “to investigate the genetic and environmental factors that contribute to autism, and related physical and mental health conditions, to better understand well-being in autistic people and their families”. A “Boycott Spectrum 10k” campaign organised a demonstration last month attended by around 30 people outside Sir Simon’s Autism Research Centre, with banners declaring “Say No to Eugenics” and “Hands Off Our DNA”. The research project has been paused, pending further consultations with the protesters.
These campaigners object to genetic research on the grounds that such studies are linked to a quest to find “a cause or a cure” for autism, and raise the spectre of eugenic “preventive” interventions, though such objectives have been explicitly disclaimed by the researchers. The protesters also demand that research funding should be diverted into educational, psychological and social interventions that may ameliorate some of the day-to-day difficulties experienced by people with autism.
No doubt we need to devote more resources to many aspects of the care of people with autism, but not at the expense of basic biomedical research that may yield longer-term benefits. Investigating the pathways linking genes and the activity of the brain and nervous system may open the way towards treatments for many clinical features associated with autism, including learning disabilities, epilepsy and mental health problems.
An open letter from the Boycott Spectrum 10k campaign is signed “the autistic community”. But this group is not representative of the community of people affected by autism, and is no way accountable to them.
Though I have been involved for 30 years in the world of autism, as a parent of a son with autism and severe learning disabilities and as a GP with autistic patients, it does not represent me. More importantly, nor does it represent my son and the many people like him who are unable to speak for themselves.
I hope that the Cambridge team will be able to reassure the protesters over their concerns about confidentiality and the potential misuse of data. And I hope that these protests will not further disrupt a research programme that can enable autistic people to build a future where support is tailored to every individual’s needs.
Our greatest teacher
‘The protesters do not represent my son and others with autism unable to speak for themselves’
Prof Sir Michael Rutter, who died last month at the age of 88, was one of the pioneers of scientific research into the biological basis of autism, identifying its strongly genetic character and its association with epilepsy. Based at the Maudsley Hospital in south
London, Rutter was a major influence on the emergence of the speciality of child psychiatry, following his early work on maternal deprivation and the factors that contribute to children’s resilience. He continued to work into his 80s, notably studying the effects of extreme deprivation on Romanian orphans in the 1980s and the effects of their subsequent adoption in the UK.
My strongest recollection of Rutter is of his response to Jim al-khalili when he featured on his Radio 4 programme The Life Scientific. Asked about the most important thing he had learnt in his career, Rutter replied that “it was the recognition that children influence parents as well as parents influence children”. He said that “all parents think that they are wholly responsible until they have their second child” – but then they realise that “it’s a two-way thing”. Rutter’s emphasis on the subjectivity of children is his lasting legacy.