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| Autistic - and Down Syndrome? - children |
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| A closer view |
I went to a ‘relaxed’ performance of A Midsummer Night’s Dream at Chichester recently. It was given by Flute Theatre, which was formed by Kelly Hunter to work with autistic people who are encouraged to come forward and join in the action with the actors. I even spoke briefly to her before the show: she is obviously very committed to the remit of the company, to involve people on the autism spectrum in performance. I am also reading Brave New World, the title also coming from Shakespeare (Ariel in The Tempest) and it set me thinking about what future there would be for people like this in a future where we control reproduction.
Let us get some terms right first of all. There are three related - and often confused - conditions:
Asperger’s Syndrome – this is an inability to communicate effectively with other human beings. At its mildest, it is being unable to make small talk and a tendency to drift away and make poor eye contact with others. It is a condition an ex-partner of mine said I have and there may be a little truth in this although, as I have managed to lead a full and independent life, it is not a crippling condition at least at one end of the spectrum. In fact, some women would say of virtually all men that they do not pay enough attention to them.
Autism is a more severe version of the above and autistic people are very reliant on carers, usually their parents. They may have a tremendous memory for numbers (such as the savant Raymond played by Dustin Hoffman in Rain Man); they may bring great joy to parents and siblings, but they struggle to make friends and to live independently. Males are four times more likely than females to have the condition.
Down Syndrome people (previously referred to as Mongols) are instantly recognisable with their flattened faces and thick necks. While autism is an intellectual condition, Down Syndrome is a medical condition which can be identified through prenatal testing and this often results in the abortion of the affected foetus.
Because autism and Asperger’s are on a spectrum, it is hard to determine accurate numbers, but there are probably around twenty five million people with the condition in the world today and nearly twice as many with Down Syndrome. Autism is a predominantly masculine condition, four to five times more common in males than females, while Down Syndrome is non-sexist, equally prevalent in both genders. Flute Theatre does not seem to distinguish between the conditions and I am sure there were people with all of them amongst those who were invited to take part in the performance – often magically – with the professional actors
There are no pre-natal tests - yet - for autism but the technology has advanced to the stage that you can now test for Down Syndrome children in the first twelve weeks of pregnancy. Unlike, autism, the causes of which are not fully known at present, Down Syndrome is caused by a chromosome (number 21) which can be identified relatively early. Although the test is not completely accurate, it can give parents a pretty good idea if their child will have the condition and, if it indicates that it will, they almost always terminate.
Before we rush to judgement on the Down baby abolishers, we should put ourselves in their position. Would you happily take on the extra commitment and frustration that having a Down child involves? Like most people I would accept and embrace any child I had but might, in the cold light of day, take the option and choose the easy path. This is one of those situations where technology influences decision making. It is hard to opt for ignorance, even harder to choose what was once known as God’s will, later just bad luck.
Dominic Lawson has written movingly about having a Down Syndrome daughter, saying that his desire to protect her meant that he bonded with her much more quickly than with her more ‘normal’ sister. He also said that his wife had expressed the view that those who had indicated that it was a shame that they had not known of her condition in advance – and, by implication, having a temination - could no longer be regarded as their friends. A bit harsh maybe, but the Lawsons would see this as a way of protecting their beloved daughter from those who think she should have been quietly flushed away before being born.
This is an impossible conundrum and I am thankful that I have never had to consider it. I both sympathise with those who opt for termination and admire those who do not, either by deliberately remaining ignorant or by ignoring the implications of a positive test for Down Syndrome. I do not think it is possible to eliminate or forbid technology which makes us more able to analyse and understand the world around us but I also think that we sometimes know too much for our own good. It is probably just a matter of time before we can predict autism accurately in unborn children and, with people being allowed to abort foetuses that have nothing worse than a hare lip, it is likely that eventually both Down Syndrome and autism will disappear as we strive for ever more perfect pregnancies.
Which will be a huge shame – and will leave the Flute Theatre crowd out of a job. Enjoy their work while you can, whether you are on the spectrum or have children with the condition or not.
Edwin Lerner
My other blog is diaryofatouristguide.blogspot.com
An interesting post by the mother of autistic sons: http://www.autismsupportnetwork.com/news/prenatal-tests-and-autism-mothers-story-4278942
For more on Flute Theatre go to: http://www.flutetheatre.co.uk
