Cambridge University's autism research centre published a
study this week which identified a link between testosterone levels
in pregnant women and autistic traits in their children. Its
director,Professor Simon Baron-Cohen, discusses the pros
and cons of prenatal screening for the condition.
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:
- There might be eugenic selection against foetuses who might
develop autism, and this is a form of discrimination against those
who are not neurotypical.
- 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.
- 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.