Monday, January 12, 2009

Screening for Autism?

Today's Guardian leads with the headline, New research brings autism screening closer to reality: Call for ethics debate as tests in womb could allow termination of pregnancies.

Response number one: every woman should have the right to terminate a pregnancy for whatever reasons she may have. It is vital that the 'ethics debate' that the Guardian calls for does not pit the pro-choice movement against the autism community. It is possible - and very necessary - to defend to right to terminate a pregnancy while also opposing the idea that detection of autism in a foetus means that you necessarily should have an abortion.

The National Autistic Society says that none of its members say that they wish it had been possible to know that their foetus would be born an autistic child so that they could have a termination. That's a heart-warming read, and certainly one that I personally echo. But actually, it's a slightly unfair question. Very few people could look at their kids and say "I wish I hadn't had you" - whether they would have made the decision not to go ahead with a pregnancy before the child was born, before s/he laughed, cried, cuddled you and became part of your life, is another matter.

The NAS also says that some of its members would have appreciated knowing that their child would be autistic before birth so that they could prepare and arrange support. Point taken. However, if society educated the population as a whole about autism, if everyone knew about it and support was readily available to everyone who needed it, then perhaps you wouldn't need to know specifically that your child would be autistic.

One issue not mentioned in the Guardian article is that knowing that your baby is autistic may inform your decision as to whether - or when - to have further children. When we decided to have a third child, we did not know that Joe was on the autistic spectrum, and his younger brother was born when he was two years and one month old. Autism - particularly at the 'higher-functioning' end of the spectrum where Joe's Asperger's lies - is virtually never detected at so early an age. There is no way in the world I would be without my gorgeous Harrison, but I can see a point that other families in similar situations may decide against, or may postpone, having another child if they knew their kid was autistic.

I worry about how these new findings may be used by some to whip up momentum to 'eliminate' autism. But I can not regret the advance in understanding that has apparently been made. Increased knowledge can only be a good thing: it is the interpretations and uses that may be attached to it that may be problematic.

This is all assuming, of course, that the Autism Research Centre's findings are based on credible science - unlike the 'MMR causes autism' nonsense that caused a panic a few years back, led to loads of kids being put through the unnecessary distress of three separate injections, and now has its authors facing GMC charges of serious professional misconduct.

The ARC's research is based on studying the amniotic fluid of the mothers of 235 children, and showing that consistently, the mothers of those kids who showed autistic traits had high levels of testosterone in their amniotic fluid. This dovetails neatly with the much higher incidence of autism amongst boys than girls (it is apparently 4:1 for autistic spectrum disorders in general, 9:1 for Asperger's), and with the idea that autism can be conceptualised as the "extreme male brain". I am not in a position to subject the research to rigorous scientific examination, but some people are, and they most certainly should.

I don't think we have a problem with prenatal screening for disorders. I don't see many socialists or feminists demanding, for example, that amniocentesis be scrapped as unethical because it leads to the abortion of foetuses with Down's Syndrome. A woman should not be forced to have a Down's child who she feels she can not cope with; but equally, a woman who does choose to have a child with Down's should receive full support with her parenting, and the child should receive full support too.

However, there is a further issue with autism. We would generally be in favour, where it is possible, of the elimination of a disability or illness. Not the elimination of disabled people, but of the disability. Where medical science has brought an end to illnesses such as smallpox, where it has made some types of blindness eg. cataracts, curable, that is a good thing. But do we actually want to eliminate autism? Simon Baron Cohen asks a pertinent question in the Guardian article, "What would we lose if children with autistic spectrum disorders were eliminated from the population?"

As we have repeatedly argued on this blog, autism has positives as well as negatives. Perhaps this is more so at the 'high-functioning' end of the spectrum, but the screening will not reveal the autistic child's location on the spectrum, and in any case, as Prof Simon says, "ethically the same issues apply wherever the person is on that spectrum".

If we eliminate blindness, then everyone can see. If we eliminate autism, though, we risk eliminating insights and talents that come with the condition along with the undoubted difficulties.

Labels: ,