Monday, 12 January 2009

”He doesn't understand the concept of money? He just inherited $3,000,000 and he doesn't understand the concept of money?”

A recent post by Leg-Iron, on the subject of those who feel threatened by the cures proposed by (among other things) genetic screening prompted a lot of debate and a follow-up post, where the point was made that we need the check on the rate of progress that the ‘placard-wavers’ provide:
“Stick to highlighting what you see as immoral, even if the rest of us don’t agree. There might well come a time when the rest of us will think ‘Wait a minute. This time, they have a point’.”
Well, get ready for the next battlefield, and it’ll be interesting to see how the lines form up:
New research published today will bring prenatal testing for autism significantly closer, prompting experts to call for a national debate about the consequences of screening for the disorder in the womb and allowing women to terminate babies with the condition.
And why might this provide those ‘experts’ with a better reason than usual to bewail the march of progress?

Because it directly threatens them, and not just their jobs:
Enabling couples to terminate the pregnancy if an autistic disorder is detected is highly controversial. Autism is a spectrum disorder, which famously includes mathematical and musical savants as well as children who are unable to communicate and spend their lives in an institution.
Hmm, aren’t noted scientists and media pontificators often claiming that they (and other historical figures) sit within the ‘autistic spectrum’?

Why, yes, it seems they are. And that throws up some issues for the ‘experts’:
Parents of children with autistic spectrum disorders are particularly strongly opposed to testing linked to termination and fear it would lead to greater discrimination and less support for them.

Professor Simon Baron-Cohen, director of the research team, told the Guardian that it is now time to start considering where society stands on the issue.

"If there was a prenatal test for autism, would this be desirable? What would we lose if children with autistic spectrum disorder were eliminated from the population?" he said. "We should start debating this. There is a test for Down's syndrome and that is legal and parents exercise their right to choose termination, but autism is often linked with talent. It is a different kind of condition."
Yes, indeed it is. And there will now be an almighty hoo-ha in the scientific world over the possibility of reducing numbers of autistic spectrum-affected children:
The research could, equally controversially, open the way for treatment, he said. "We could do something about it. Some researchers or drug companies might see this as an opportunity to develop a pre-natal treatment. There are drugs that block testosterone. But whether we'd want to would be a different matter."
Why not leave it up to the parents to decide that? It is, after all, their decision, just as the decision to abort any other potentially damaged child should be – they, after all, are the ones who have to live with (and cope with) the consequences?

Naturally, the various charities, trusts and organisations are sounding warnings as they perceive their jobs potentially under threat:
The National Autistic Society says some of its members think a test to predict autism could be useful in helping parents prepare and get support for their child. At the moment, many children are not diagnosed for two or three years, which is a source of frustration. But none have said they wished it had been possible to have a termination.

"I think it is really important that the autism community has a key role in shaping the research priorities in this area," said Amanda Batten, head of campaigns for the NAS. "There could be some real gains in recognising autism early. There are benefits, but there are concerns. People think it is about eugenics.

"It is important to stress that everyone with autism has the potential to make a unique and valued contribution to society. It is not always the autism that is a problem. It is other people and a lack of services and support."
‘Give us more money and you too can ignore reality’…

On the other hand, there are those who can see the other side – again, on behalf of ‘society’:
Vivienne Nathanson, head of ethics at the British Medical Association, agreed a debate was needed. "The question, then, is are we comfortable with [testing] for a disorder which is life-limiting in terms of opportunities and experience, rather than life-ending?" she said.
If you can (potentially) treat it and either alleviate it or eliminate, why not…?

Why does the medical profession push for preventative action like the inclusion of folic acid into everyone’s foodstuffs, if not to prevent exactly this kind of outcome?

And if it does turn out to be preventable, then the other kind of ‘public good’ advocates will be waiting in the wings to trumpet the ‘cost to society’ if people refuse:
The more complicated ethical issue would be that of treatment in the womb, she said. "You get to the situation where you have a very great difficulty if families say we wouldn't want to be tested. As a society, do we accept that people can refuse tests when the outcome can make a difference to that unborn child?"
It’s a minefield, indeed…

11 comments:

Leg-iron said...

The autism talents...aren't. Musical savants can play a piece of music after hearing it once, mathematical savants can do things like tell you which day of the week was April 7th 1604, artistic savants can produce a perfect copy of an image.

What they can't do is write original music, devise new mathematical concepts or paint original or adapted scenes. So this 'loss'... isn't.

There are high-functioning people with this condition - when it's not autism it's called Asperger's - but the only real clue you have is that they're not particularly sociable. They are also not dependent on Righteous largesse.

Curing or eliminating debilitating autism isn't a bad thing in my book, but I'd leave it to the parents in every case. Some will be happy to deal with it, some won't.

The option should be available, though, and parents should be informed if the child is going to be autistic. It should then be their decision, and theirs alone.

Mark Wadsworth said...

"the autism community"

'nuff said.

Furry Conservative said...

Hey, slow down a minute. This is eugenics, isn't it? Where do we apply the limit at what is considered 'damaged'?

Likely to be under 5'5"? Missing a hand? In some parts of the world being female is enough to get you scraped out of the womb.

Just because the Autism society opposes this monstrosity doesn't mean that they are doing it from a selfish and corrupt self-interest. Even if the child wouldn't turn out to be a 'genius', it still wouldn't be reason to terminate it. How many of us did turn out to be geniuses?

Leg-iron said...

FC- that is the problem, where do we apply the limit?

As long as the choice is only available, rather than imposed, then it all works fine. It's up to the parents whether they want to accept the responsibility.

If it gets into government hands, well, they don't like smokers, they don't like drinkers, they don't like fat people... Anything associated with a gene can be eliminated from a population if the government is ruthless enough. According to recent reports, that includes Tory voters!

I still think the option should exist, but it must only be available to the parents. It makes no difference to me if someone chooses to have a child with any form of defect because I won't be looking after that child. It makes a difference to the parents, so they should be able to choose.

Pressure groups aren't against the technique. They're against the choice. That's the objection here, I think.

Deadbeat Dad said...

A few years back, I had regular contact with an autistic child, and I found it pretty distressing. So too, I think, did his parents (friends of my girlfriend at the time), who had long been in denial about his condition and were struggling to come to terms with it.

He was a sweet kid, but totally locked in his own little world - an energetic toddler in relentless pursuit of his limited obsessions. I used to try to entertain him to give his parents a break when they came to visit us, but it was frustrating and exhausting. He would take me by the hand and trot around the house opening and closing doors in an endless loop. It was almost impossible to engage his interest in anything else (and even then only briefly).

The only respite his parents ever had was when they stuck on a Thomas The Tank Engine video (his other obsession - a common one in autistic children, apparently). No wonder they were permanently frazzled.

And what did the future hold for this little boy? Quite clearly, a life of permanent dependence on his parents (and institutional care eventually, I suppose), and only a tangential engagement in mainstream society (at best).

Would I, as a parent, take the opportunity to screen for something like this? Damn right I would.

JuliaM said...

"Curing or eliminating debilitating autism isn't a bad thing in my book, but I'd leave it to the parents in every case."

Indeed. In the majority of cases, they are the ones affected. But you can bet the various advocacy groups will be revving up to 'assist' in their decision...

"This is eugenics, isn't it?"

That's the tack that'll be taken by some of those groups. I can understand that there's opposition to abortion; what horrified me was the indication in that article that some might also object to the possibility of pre-birth treatment...

"Would I, as a parent, take the opportunity to screen for something like this? Damn right I would."

Yup, leave it to parents, free of advocacy groups urgings.

Umbongo said...

Leg-Iron

"What they can't do is write original music, devise new mathematical concepts or paint original or adapted scenes. So this 'loss'... isn't."

I'm not sure you're completely correct. It appears that Paul Dirac was probably autistic or, at least, displayed symptoms of autism. Also (and this is only anecdotal evidence) I know a few academic mathematicians: they could all be described as "odd" or, at least, pretty eccentric. Although they seem to function well in the academic environment, their domestic lives are usually chaotic and make life difficult for other family members - a point made by DD. Even so, the probability of the birth of an individual who is both autistic and a genuinely original creative genius is minute. IMHO your general argument - leave it to the parents (as DD points out, they're the ones that will be doing the heavy lifting) - stands.

Leg-iron said...

I read the article on Dirac. It also points out that, rather than having any sort of autism spectrum disorder, he might just have been a miserable bugger.

I have a friend I see rarely. He's perfectly willing to come out for a beer but it would never occur to him to initiate the outing. He never visits anyone unless they ask him to. It honestly does not occur to him to 'just call in'. You will never get him involved in karaoke or any 'team' event, he hates parties and discos, he is fiercely independent and I recall a wedding he was invited to where he turned up, said an awkward 'Well done' to the bride and groom, and left.

He can be a miserable bugger too. He ended up in hospital a few months back because his independent streak meant he refused to get help as his illness progressed. While there, he was diagnosed as Aspergers. He refuses to accept it.

In his own words - 'Once they get you in there, anything you do or say that doesn't fit the Human Haynes Manual means there's something wrong with you. You're not allowed to be different now, everything is a disorder.' The rest was a stream of abuse involving witchdoctors and white coats...

It's easy to look back on folk who preferred to spend all their time working at a profession they loved rather than dancing and making merry, and claiming they had a disorder. More likely, they enjoyed their work so much there just wasn't room for anyone else, and often these seriously smart people find it hard to think down to our level and engage in jokes and chit-chat.

They aren't necessarily damaged just because they're different.

Leg-iron said...

Should have said - the article I read on Dirac was in this weeks New Scientist.

Deadbeat Dad said...

Umbongo - I think it is important to distinguish between autism proper (which is what I witnessed in my
friends' child), and Aspeger's or 'autistic spectrum' conditions. There is a world of difference. A quick google suggests that Paul Dirac was possibly an 'Aspie'.

One of my clients (from a few years ago, in my pre-family court days when I had my own I.T. consultancy) had a son with Asperger's. Although he had his difficulties and wasn't comfortable living independently (he lived at home with his mum), he was reasonably high-functioning, and had a semblance of a social life - something which would be unthinkable in a full-blown autisti. I can't remember whether he managed to hold down a job, but I did speak to him on the phone a couple of times and he struck me as competent and articulate.

The subject of autism and Asperber's always reminds me of a very entertaining passage in Hugh Sebag-Montefiore's book Enigma, about the code-breakers at Bletchley Park during WW2. On the subject of Alan Turing, perhaps the most significant figure in this operation:

"Turing reserved his most unusual behaviour for the summer months. He suffered from hay fever, but rather than staying inside when the pollen count was high, he would bicycle around the countryside wearing a gas mask. He refused to repair his bicycle, even though the chain was faulty. Instead, he counted the number of revolutions it took before the chain became unstable, and then backpedalled until it was safe to ride normally again. Anyone could see the state the bicycle was in, he reasoned, so nobody would try to steal it. That was not the case with his tea mug. Rather than risk losing it, he chained it to a radiator with a padlock."

It is speculated that Turing suffered from Asperger's...

On the more general subject of genetic screening: a good friend of mine has a daughter with an obscure syndrome (the name of which I don't recall offhand). It took a few years to pin down its precise identity, and there are only a relative handful of sufferers here in the UK (and only one person worldwide - a Hungarian - who is fully engaged in its research). Thanks to her devoted parents and younger siblings, she enjoys a wonderful quality of life -- despite the fact that she will always remain incontinent, and will probably never progress much beyond the mental age of a toddler. Her life expectancy may be limited (30 years at most), but she is a joy to her family and I know that none of them would have wished to deny her chance at life.

Deadbeat Dad said...

"I have a friend I see rarely. He's perfectly willing to come out for a beer but it would never occur to him to initiate the outing. He never visits anyone unless they ask him to."

Your friend hasn't been through the family courts recently, has he, Leg-iron?

Just a thought...