Professor Baron-Cohen Response

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Research into the biomedical causes of autism spectrum conditions is moving forward at a tremendous pace, with new genes being associated with autism almost every month, and with a strong drive by scientists to find biological markers, perhaps to improve diagnosis, and to understand causes.

On the BBC health website recently, I flagged up the need for the autism community (parents and professionals and those with the diagnosis) to be thinking ahead about how such research might be used, rather than just leaving it to the scientists.

Our research at the autism research centre (ARC) in Cambridge does focus on understanding possible biological causal factors but is not motivated by a desire to develop a prenatal test for screening. It is simply to increase our knowledge of how autism comes about.

It is unfortunate that sometimes the popular press seizes on the opportunity to discuss such basic research into causes in terms of its implications for prenatal screening. This happened in the Guardian with our research into foetal testosterone, for example, despite the fact that the research we conducted was not a prenatal screening study and did not study diagnosed autism. (Both were errors in how the research was reported).

However, we must realize that as science uncovers possible causes, this information may be picked up by drug companies or other researchers and used in ways that the original team did not envisage.

If there was a prenatal test for autism (and there isn’t one at present and there may not be one for several years), this could have one clear benefit, which is to bring forward the age at which diagnosis is possible, from the current average age of three years old. Knowing antenatally that your child might develop autism could mean that families could prepare, that proper support could be put in place, and that psychological therapies could be started at an earlier point (even from birth).

If there was a prenatal test for autism, there might be some disadvantages:

1. There might be eugenic selection against foetuses who might develop autism, and this is a form of discrimination against those who are not neurotypical.

2. Some parents might opt for a termination because they think their child will not have a good quality of life, even though the child may in fact make a good adaptation and/or society could adapt to them.

3. The genes for autism may be linked to the genes for talent (and by talent I don’t just mean the musically or artistically or mathematically gifted, but even in those with apparent learning difficulties there may be an excellent memory, or excellent attention to detail and patterns, or an excellent ability to focus attention for long periods, or acute sensory hyper-sensitivity), such that eradicating the genes for autism may also eradicate the genes for these talents.

If there was a prenatal test for autism, some parents will exercise their parental choice and opt for a termination, and this is within the law, and I support parents’ freedom to choose or not choose to have a baby.

My own view is that I think all foetuses – all people - have a right to life; that the value of a person’s life cannot be judged by characteristics such as whether they have good or poor social skills, or whether they are talented or ordinary or have learning disabilities. Every individual is special, and while we are all different, no one is better or worse than any other and no one’s right to life is greater or less than anyone else’s.

Some individuals may need more support than others, and it is a mark of a civilized community that we provide such support for those who need it. Finally, diversity is part of nature, including human beings, and there are many neurological sub-types that make up the spectrum of individual differences.

Autism is not like cancer, where there are fewer controversies surrounding whether one should select embryos who will never suffer from cancer. That is because autism is not a disease, and need not lead to suffering, and with enough accommodation by society, people with autism can be free of suffering. Autism itself is a wide spectrum, and many people with autism can make valued contributions. But even those who will remain dependent all their lives are either special to those who love them, or just intrinsically special.

I have a sister, Suzie, who is in her 40’s, and has profound learning difficulties and physical disabilities. She is in a wheelchair, needs 24-hour nursing care, cannot feed herself, has almost no language, and probably has a lower level of psychological than a one-year-old. Yet she enjoys people, enjoys simple pleasures, and has a quality of life. She laughs, she cries, she sings, she jokes. My relationship with her is among the richest I enjoy. I am glad that she is alive and that she was not screened out of existence before birth and that my parents did not opt to terminate her life. People don’t have to earn their right to life by having the skills to make a contribution. They have a right to life. Period.

Every individual is special, and while we are all different, no one is better or worse than any other and no one’s right to life is greater or less than anyone else’s.