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Is autism screening close to reality?

This article is more than 15 years old
Call for ethics debate as tests in womb could allow termination of pregnancies

New research published today will bring prenatal testing for autism significantly closer, prompting experts to call for a national debate about the consequences of screening for the disorder in the womb and allowing women to terminate babies with the condition.

The breakthrough study by Cambridge University's autism research centre has followed 235 children from birth to the age of eight. It found that high levels of testosterone in the amniotic fluid of pregnant women was linked to autistic traits, such as a lack of sociability and verbal skills, in their children by the time they are eight.

It raises the possibility of an amniocentesis (the same procedure used to test for Down's syndrome) to detect autism.

Enabling couples to terminate the pregnancy if an autistic disorder is detected is highly controversial. Autism is a spectrum disorder, which famously includes mathematical and musical savants as well as children who are unable to communicate and spend their lives in an institution.

Parents of children with autistic spectrum disorders are particularly strongly opposed to testing linked to termination and fear it would lead to greater discrimination and less support for them.

Professor Simon Baron-Cohen, director of the research team, told the Guardian that it is now time to start considering where society stands on the issue.

"If there was a prenatal test for autism, would this be desirable? What would we lose if children with autistic spectrum disorder were eliminated from the population?" he said. "We should start debating this. There is a test for Down's syndrome and that is legal and parents exercise their right to choose termination, but autism is often linked with talent. It is a different kind of condition."

The research could, equally controversially, open the way for treatment, he said. "We could do something about it. Some researchers or drug companies might see this as an opportunity to develop a pre-natal treatment. There are drugs that block testosterone. But whether we'd want to would be a different matter."

Only a small minority of people are at the very high-functioning end of the spectrum, with formidable powers of focus and concentration and a love of systems which may lead to extraordinary abilities in mathematics.

A prenatal test would not be able to identify such a child, or one who will have extreme learning difficulties - and anyway, says Baron-Cohen, "ethically the same issues apply wherever the person is on that spectrum".

The National Autistic Society says some of its members think a test to predict autism could be useful in helping parents prepare and get support for their child. At the moment, many children are not diagnosed for two or three years, which is a source of frustration. But none have said they wished it had been possible to have a termination.

"I think it is really important that the autism community has a key role in shaping the research priorities in this area," said Amanda Batten, head of campaigns for the NAS. "There could be some real gains in recognising autism early. There are benefits, but there are concerns. People think it is about eugenics.

"It is important to stress that everyone with autism has the potential to make a unique and valued contribution to society. It is not always the autism that is a problem. It is other people and a lack of services and support."

Vivienne Nathanson, head of ethics at the British Medical Association, agreed a debate was needed. "The question, then, is are we comfortable with [testing] for a disorder which is life-limiting in terms of opportunities and experience, rather than life-ending?" she said.

"My guess is that society would look at it like Down's syndrome," she said. "There are people who wouldn't approve of terminations and people who would. If you talk to parents of people with autism, however much they love their children, they find it very difficult. They agonise over their child's limited life opportunities and some of them say it would have been better not to have had the child and some don't."

The more complicated ethical issue would be that of treatment in the womb, she said. "You get to the situation where you have a very great difficulty if families say we wouldn't want to be tested. As a society, do we accept that people can refuse tests when the outcome can make a difference to that unborn child?"

A response to this article by Simon Baron-Cohen was published on Tuesday 20 January 2009. Read it here. The headline was changed on Wednesday 22 July 2009.

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