Genetic test for autism - how close is “close?”

This morning’s Today Progamme on BBC Radio 4 carries a short segment on the possibility of a prenatal test for autism. This was prompted by an article by Professor Simon Baron-Cohen on the BBC website which raised concerns about the possible negative consequences of prenatal testing.

Baron-Cohen is a proponent of the male brain theory of autism. This is based on two key concepts. First, in his book, The Essential Difference, Baron-Cohen puts forward the argument that men tend to be more capable when dealing with objects and relationships between objects. They are systemizers. Women tend to be more capable when dealing with people and relationships between people. They are empathizers. Baron-Cohen proposes that this is the result of differences in the structure and organization of male and female brains that is related to differential exposure to testosterone in the womb.

Secondly, it can be argued that autism is a manifestation of the extreme male brain. This seems to fit the picture of object oriented autistics who struggle with social skills but are able mathematicians and engineers. Baron-Cohen is open to the idea that this is an inherited genetic tendency. See for example his theory of assortative mating. But he also claims to have found

a link between higher levels of the male hormone testosterone in the amniotic fluid surrounding a foetus and autistic traits when the child was eight.

And animal studies have shown foetal testosterone levels influence brain development, masculinising it.

Baron-Cohen’s theories raise as many questions as they do answers and have attracted both supporters and critics within academia and the autism community. But Baron-Cohen has started this debate, not to promote his theories, but to consider the ethical implications, if they are correct, for future pre-natal testing for autism. What if there is a connection between the genes for autism and the genes for mathematics?

If it was used to ‘prevent’ autism, with doctors advising mothers to consider termination of the pregnancy if their baby tested ‘positive’, what else would be lost in reducing the number of children born with autism? Would we also reduce the number of future great mathematicians, for example?

Of course pre-natal testing need not lead to abortion. We could use drugs to regulate the level of testosterone in the womb. But Baron-Cohen warns

If reducing the testosterone in a foetus helped that baby’s future social development, we would all be delighted. But what if such a treatment reduced that baby’s future ability to attend to details, and to understand systematic information like maths?

Caution is needed before scientists embrace prenatal testing so that we do not inadvertently repeat the history of eugenics or inadvertently ‘cure’ not just autism but the associated talents that are not in need of treatment.

While it would be unfair to judge Baron-Cohen’s position on the evidence of an opinion piece that was written with the express intention of provoking a debate, this article did set a few alarm bells ringing, if only because it was an uncomfortable reminder of my own position in the not so distant past. There are strong echoes of the arguments that were explored in Elizabeth Moon’s novel, The Speed of Dark. In a not so distant future pre-natal testing has all but eliminated autism from the planet. There are still autistic adults who enjoy a relatively privileged, if somewhat restricted existence working for a corporation that exploits their systemizing skills while making accommodations for their autism. A central question in the book revolves around the company’s quest to find a cure that will do away with the need for these expensive accommodations while preserving the systemizing talents of its workforce. If you have not read it I can recommend it. But be warned. Some autistic people cried when they read the ending.

It seems to me that Baron-Cohen comes close to suggesting that we should only cure autism if we can be sure of preserving its “associated talents.” And the other side of that argument is that we should preserve autistics because of their value to society and not because of their intrinsic worth as human beings. I may be doing Baron-Cohen an injustice here. He does refer to the greater danger of eugenics as well.

It is significant that in the radio interview it is the interviewer who raises the eugenic issue, chiding Baron-Cohen for offering a utilitarian rather than an ethical opposition to genetic testing and Baron-Cohen agrees with him. He is at pains to emphasize that even though pre-natal tests may be 5 years away the moral and ethical dimensions are complex and a debate needs to take place now and not be hurried through when the medical technology is a done deed.

In that context the Today Programme made an interesting choice of protagonist to balance Baron-Cohen’s point of view. Professor Joy Delhanty of University college may be familiar to some readers. I blogged about her attempt to offer pre-implantatation genetic diagnosis to parents at risk of having another autistic child. Lacking a genetic test for autism, she proposed to screen for gender and only implant female embryos that were statistically less likely to be autistic. This was not mentioned today. But she did suggest that Baron-Cohen’s fear that a pre-natal test would be used to screen all autistic traits out of the population was misplaced. She insisted that pe-natal testing would only be offered to people who were already significantly at risk of having another autistic child or to family members with a strong genetic risk. The implicit assumption was that only severely autistic traits would be screened out and talented aspies would continue to be born and that this need not concern medical ethicists. Baron-Cohen did not sound convinced.

I know that some people have questioned Baron-Cohen’s judgement in raising this issue when there is no immediate pressing concern. But Delhanty’s misapprehension of the complexity of the issues surrounding autism, alongside her enthusiasm to implement the latest developments in genetics without regard for the broader societal implications suggests that Baron-Cohen may well have done us all a service by raising this issue now.

My Background

ACT NOW FOR AUTISM

United Kingdom Autism campaigners are working together to ACT NOW about the proposed benefit cuts and medical assessments. We have launched a petition which we intend to deliver personally to No 10 Downing Street. Please sign here and show your support.

I am Mike Stanton. I live and work in the UK where I teach children with severe learning difficulties, many of whom are autistic. My adult son is diagnosed with Asperger Syndrome. I am a member of the National Autistic Society. I speak and write on autism. My book, "Learning to Live with High Functioning Autism" is available in a Spanish translation, Convivir con el Autismo. I have also contributed a chapter to Asperger Syndrome in Adolescence edited by Liane Holliday Willey.

ACTION FOR AUTISM is a reaction against names like Action Against Autism and Defeat Autism Now! Names like these suggest to autistic people that we are against them as people. You may not mean that. But if you care about autism you ought to care about the feelings of autistic people and not use language that makes them angry or upset. If you disregard the feelings of autistic people do not be surprised if you are disregarded.