Wednesday, 7 January 2009

To screen or not to screen?

I've spent a large part of today talking to radio stations in response to Simon Baron-Cohen's adroitly seeded article on the BBC's website on the prospect of prenatal screenings for autism. It kicked off a lively debate, particularly on the BBC network, that reflects the wide public concern over the issues of autism and abortion.
Baron-Cohen raised the issue to allow time for a proper debate about the ethical implications of prenatal screening. He believes that testing is inevitable and will probably be available within a few years. One of his main concerns is that we might, through treatment or termination, sweep away brilliant scientific or mathematical minds in a misguided drive to eliminate the condition. In case I have misrepresented him, here are his actual words: "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."
I find the worry about eradicating the next generation of Einsteins to be the weak link in Baron-Cohen's argument. Very few autistic people possess that level of talent, though it is true that a disproportionate number of winners of science's major prizes register on the autism spectrum. However, if I may flip the whole debate on its head for a second, the hope that their child might be an artistic or mathematical genius is perhaps the worst possible reason for continuing an unwanted pregnancy. Autistic children are hugely demanding on their parents, regularly trigger family breakdown, and even the extremely high achievers often experience isolation, alienation, depression and impoverished emotional lives as adults. There is a tendency to romanticise the suffering of geniuses such as Mozart, Einstein and Van Gogh, as if their achievements somehow compensated for their personal problems. Any in-depth examination of their lives will show that this is far from the case.
Which brings us back to the delicate matter of abortion. The public debate has been concentrated on this question, in sometimes apocalyptic tones. There is a widespread fear that mass abortion would ensue, and out of this has come a conviction that prenatal testing should be resisted. I share Baron-Cohen's belief that testing is inevitable, as well as his concern that doctors might be too quick to recommend termination of an autistic foetus. But the idea that parents will automatically take the "easy way out" en masse seems to me to be hugely ill-founded. Babies are conceived in all kinds of circumstances, but as far as planned pregnancies go, it defies logic to assume that a couple who have spent months, perhaps years, making the decision to have a baby, considering its prospects, making space in their home and social lives, and maybe even reading several books on the subject, will suddenly take fright in this way. Being told your child is autistic is, initially, a bitter pill to swallow, but with time comes understanding of the condition and a realisation that, with the right support and therapy, even a severely autistic child can make enormous progress and offer its family the kind of rewards you don't get anywhere else.
My concern is not about whether these tests should exist, since it seems certain they will exist, and any attempt to force the government to reject them will only create an opening to be exploited by private clinics. And frankly, this is too big an issue to be left to the commercial market. The wider issue is about how the tests will work and how they should be applied. It will, necessarily, be a crude measure, and further testing will undoubtedly be needed after the child is born. Some autistic people spend their lives in institutions; others win Nobel prizes; I cannot imagine how a test in the womb could begin to distinguish between the two. Parents who choose to take the test ought to be advised on the full scope of the autism spectrum and the range of help and support available, preferably at the moment that the word autism is first pronounced by a doctor. To be told flatly: "Your child will be autistic" does not allow an informed choice. The initial shock needs to be absorbed and put in context.
There is no denying that some parents will take the test, see the result, and terminate a child they might otherwise have had. This is unavoidable. But it is not universal, as the experience of Down's syndrome testing has shown. And for those who choose to go ahead, knowing that their child is autistic at the earliest stage, having the chance to come to terms with it, and being put in touch with the network of autism support services, has to be a good thing. When I think back to the turbulent times Magteld and I went through in the build-up to Euan's diagnosis, I would have to be a very heartless person to wish that kind of experience on anybody else.
Ultimately, people will draw their own conclusions. Here are mine. Firstly, that prenatal screenings for autism, in some form, are inevitable, and that the debate about whether they are right or wrong is tangential to the issue. But when they do arrive, it is surely preferable to have them introduced through the regulated public health system than by private clinics. Secondly, that a lot of prospective parents are not impressionable simpletons who will dash to the abortion clinic at the slightest provocation, but conscientious people who have carefully weighed up the decision to have a child in the first place and should not have vital information withheld from them without good reason. Thirdly, that autistic people are special individuals who, given the right support, can achieve remarkable things, and who deserve our admiration whether that achievement turns out to be a Nobel prize or learning to buy their own groceries. And finally, that if the general population could learn to be more accommodating to people with autism and appreciate their talents, society would be a better place. We need our Einsteins, and they need us.

3 comments:

Guthro Tull said...

Brain-rattlingly excellent writing Gordon. Looking forward to the biggie next week.

lynndoyle said...

My son is a 21 year old autistic young man. We have had our trying times when he was growing up but in all this time I never once considered the thought of an abortion if I had known. Pre-screening, I don't think so when the onset of Autism does not start to show until the child is about 2 years old.

seanchai1916 said...

Hi Gordon ...after reading your article in the herald about your son Euan , i thought i was actually reading about my grandson Connor , (who will be 5 years of age on saturday 21 feb).
Connor had just been diagnosed with autistic spectrum ,although we knew (surmised)for a couple of years that's what it was he had .I have read as much as possible on the subject and i,m glad to see that there is light at the end of the tunnel for people with autistic spectrum.Its a very long winding tunnel but at least we (having been verified connors condition)are now moving through that tunnel albeit at a very slow pace .We await to see if connor will be accepted into a school for children with autism .The nursery he attends just now has brought him on quite a bit in the last year but there is no specialised teachers in the nursery and they are only 'feeling their way' as far as autism is concerned .Connor does not yet speak(although he is very verbal at times) . As a young baby Connor had hirschsprung disease and went through many operations .At first we as a family thought that that was why connor was a "wee bit slow" in talking and communication of any sort .That has now changed and he soon lets us know when and what he wants by pointing (or choosing between two or three different choices .)...
As you are already aware, at times it seems as though we (as a family)are alone in our quest to find out what is the best way to help connor ...although i must say the doctors and all concerned have been very helpful but i can't help but feel that they (regarding autism)are feeling the water as they go along ... at times we do feel alone .
Thank you very much for penning the article in the herald which i/we read after a friend handed us the magazine knowing that connor had been diagnosed with autistic spectrum quite recently .
thank you .
Gerry
PS. you mentioned Euan's Cd's and i must add that Connor loves his videos and dvd's and gets upset if someone has arranged them in a different order .