12 Jan 2009

Prenatal tests and curing autism in The Guardian

Checking the Guardian late last night, I saw a glut of autism headlines. The first is New research brings autism screening closer to reality.

Baron-Cohen and his team have just published on their study tracking 250 children, all of whom had amniotic fluid testosterone levels tested prenatally. These non-autistic children's consequent development has been studied until they were 8 years old. I have not managed to source the study paper but on the ARC website I read:
So far we have only conducted studies of typical individual differences and found that foetal testosterone is inversely associated with social development, language development, and empathy; and that foetal testosterone is positively associated with systemizing and number of autistic traits.
So, based on this, the papers are shouting about prenatal screening tests? Baron-Cohen's testosterone theory of autism is not well established or universally accepted. Baron-Cohen seems to accept that the current male/female ratio of autism diagnosis represents the real numbers while other researchers think that women are underdiagnosed.

Moreover, what this study has measured is a few autistic "traits" which is not the same thing as autism. These are just ways of being that vary in the population, it's possible to be a bit less chatty and not much of a party animal and not be autistic! And I wish they'd drop that old canard about autism and reduced empathy. Where is that coming from? It's a dangerous, damaging delusion.

So there's no proven link between high fetal environment testosterone levels and autism, but even if there was, there's no way of telling how each affected child would develop.
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."

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 is it necessary to find a way to prevent people who perceive the world differently, people like my son, with all their strengths, problems, disabilities and talents from existing? Even if this theory was to lead to a prenatal screening tool, which I very much hope it doesn't as it would have little sensitivity and specificity, need we discuss the right of autistic people to be born? It's also irrelevant that autistic people can have special talents that benefit society and that if there was a way of telling if a child could grow up to be (sarcasm) a useful, clever autist or a wasteful, stupid autist with absolutely nothing to offer (/sarcasm) the test would be more useful. Heck, if everyone had to prove their usefulness to society to be allowed to exist, the world's population would take a big drop.

It is also very premature to be thinking about using this bit of research to work on curative techniques.

An NAS spokesperson says that currently gaining a diagnosis can take too long, and while better diagnostic tests would help speed that up:
"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."
I can think of no reason save the chance to offer abortions, why a better diagnostic test has to be done prenatally.

The final few paragraphs quote Vivienne Nathanson, the head pf ethics at the BMA. These made me feel queasy. This is how the ethicist of a leading doctor's group puts it:
"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.

"My guess is that society would look at it like Down's syndrome," she said. "There are people who wouldn't approve of terminations and people who would. If you talk to parents of people with autism, however much they love their children, they find it very difficult. They agonise over their child's limited life opportunities and some of them say it would have been better not to have had the child and some don't."

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?"

That final sentence sends chills up my spine: "As a society, do we accept that people can refuse tests when the outcome can make a difference to that unborn child?"
Is it a possibility that people will one day be forced to have these tests?

I also listened to the Guardian podcast by Mike Duran about this and I felt obliged to transcribe some of it. Health editor, Sarah Boseley is introduced and takes on the role of explaining the research. Here's some of what she had to say:
"...It might be possible to test the levels of testosterone around the growing fetus in the womb.
...
This is research done on NORMAL children, not autistic children...we all have some autistic traits; being LESS sociable, being LESS verbally agile, and perhaps LESS empathetic towards other people.
...
Autism spectrum disorder runs a LONG way from the development of MINOR difficult traits such as children not being very sociable and not being very verbally skilled which might lead to learning difficulties right through to people who probably can't lead a normal life outside of an institution, who can't communicate with anybody, who couldn't hold a conversation and somewhere around there also are some very interesting, very BRILLIANT people who perhaps become mathematicians or musicians. What you can't possible know if you have a prenatal test in the womb is what level of autism, what place on the autistic spectrum your child would have.
(My emphasis.)
Who briefed this woman and how can she speak such rubbish? Autistic people are either BRILLIANT or have to be stuck in institutions, unable to converse or communicate in any way!? Too many people have taken the idea of the autism spectrum and apply it rigidly as if it was a linear thing, with each autistic person falling somewhere along a line of "functioning" level, when it's much fuzzier than that. People are good at some things and bad at others, ability to cope varies with time and location, stress levels and accommodations available. A child could cope brilliantly at home but have severe difficulty at a badly optimised school. An adult may do well while at university but flounder in a certain job. Very few (most likely no) autistic people cannot communicate in any way whatsoever.

On the matter of causes of autism, she said:
"...it seems to be a combination of genes and the environment, we don't know what the environmental factors are. But a lot of genes are now being identified, over 100 of them so far, that do have some link with autism and it does look that if we can't have a prenatal test featuring testosterone then one day you may be able to do pre-implantation genetic diagnosis...and you would be able to identify an embryo that tended towards autism and again it could lead to a termination."
Shudder. At least she's not messing around with a story about how this is good news for autistic people as early warning can help parents prepare, no, it's all about getting rid of the damaged goods.

Duran then talks to Charlotte Moore, mum to 2 autistic sons. She says that she doesn't see autism as a disease that has to be eradicated and that the vast majority of autistic people can have a good quality of life provided certain accommodations are made, but these can be difficult to achieve. She says that in the hypothetical situation where pregnant mothers are told that their babies may be autistic, they should try to read about the condition. But she said, it would be hard for them as it's so complex and they have a short time to make their decision. Also, each person has to decided how they would cope with the situation themselves but they should speak to parents of autistic children about what their view is. But the short time available would not give the woman any picture of what her own life would be like. There was no mention of learning from individuals who are themselves autistic.

Duran then asked Moore a question that just shocked me, "Would it depend also on whether the child had other siblings because there are forms of autism which could put those siblings in danger if they manifest violence among other anti-social traits?"

Sweet mother of mercy this is the Guardian! Even for a devil's advocate question, that showed a disgusting level of ignorance, prejudice and callousness. If this guy's going to talk about autistic people, children even, as if they're anti-social sibling beaters (when I'd say it's far more likely that autistic people themselves are at a far higher risk of physical and emotional harm-I can look for evidence for that theory if needed) he will affect the public's perception of the condition and increase the fear and ignorance. Then it's a given that pregnant women will opt to abort the "monsters" they're carrying.

Is there a test to see if the child you're pregnant with will grow up to be a thief, an abuser, a drug dealer, a thug, a user, a murderer? Is autism so much more deserving of eradication than all these?

Thankfully Charlotte Moore says "It's too crude to say you shouldn't have an autistic child because it might damage your other children. I would just reject that."

Duran asks, "Do you welcome this test, doctors presumably would argue that armed with the facts you can prepare for any problems with what the National Autistic Society calls a serious, life-long, disabling condition?" Moore replies that it would be good as:
"most parents can't tell until the child is a toddler sometimes beyond [that s/he has autism] and what happens is that you waste a lot of time acting as if your child is not autistic and maybe making a lot of wrong choices about how, what you do with your child. Where if at least if you'd had the test when you were pregnant and you knew that your child was going to be autistic, then you would be better prepared..."
I don't agree. I want to see basic research on autism but with caveats. The NAS phrased it well:
The National Autistic Society (NAS) welcomes research into all areas which may further our understanding of autism, but it is vital that the information gained from any research is handled responsibly. The rationale for research into autism must always be to improve the well being of and increase the opportunities for people affected by the condition.
Michelle Dawson, is forever saying it and the message has yet to sink in: autistic people deserve to be benefit from and be protected by recognized standards of science and ethics. I look forward to the day this happens.

11 comments:

Socrates said...

Superb post, linking to it on the New REpublic.

Sharon said...

Thanks Socrates.I tried to keep it short but it just kept growing! Your own post on this is good too. Did you read this one, also good.

Jean said...

One one hand, in retrospect, it would be great to have a definitive diagnosis for our children, as many of us have spent months, and maybe years, wondering if our child had autism or not. That's precious time wasted that we could have spent educating our kids properly, instead of trying to get them assessed.
Eugenics is a different matter. Of course it is abhorrant that kids could be aborted because they have autism, but as the article pointed out, this already happens with kids with Downs, and other "defects". That's ultimately an individual choice to be made by the parent, and really we have no right to judge what each individual feels is the right thing to do.
However, the utter ignorance of autism demonstrated is disturbing, but frankly (and sadly)is not that surprising. Most people who have seen Rainman think they know all they need to know.
It sounds as if a definitive test is a long way off anyway. Long may it stay that way.

Heike said...

Yeah, this is a tricky one. I refused all test with my kids so i would not be put in a situation where i was coerded into a termination. I would not be surprised if one day testing is mandatory like vaccination. And no doubt will we one day have tests(accurately or not!) for CP and autism and whathaveyou. I shudder to think what will happen then. The German in me wants to scream at this modern eugenetics version we are facing. So my personal response was not to partake in the testing rigmarole. Some called me irresponsible for doing that (especially as it turned out my kids had disabilities - but then i can gloatingly point out that no current test would have detected them!). I always worry with any "mandatory" health issues... Who sets the rules of what you have to do, and why. And based on what knowledge....

Phil Schwarz said...

Judy Badner, a longtime member of Autism Network International, and for several years its science advisor, is a professor of psychiatry at my alma mater, the University of Chicago. She studies the genetic underpinnings of psychiatric conditions and disorders.

She has a personal background that involves a bit of the drama and controversy over discovery of genetic markers for various conditions, and their subsequent use and abuse: she has achondroplasia, a form of dwarfism.

In the mid-1990s, a single-gene marker for achondroplasia was discovered. This prompted the national self-advocacy organization of people with achondroplasia and other forms of dwarfism, the Little People of America, to issue a well-reasoned position statement on the use and abuse of genetic research and testing.

Several years ago, Judy adapted the LPA’s position statement for research into the genetics of autism, and applications of that research. It is equally well-reasoned.

It can be found here.

bullet said...

Empathy depends o nthe individual I suppose. I do not have good empathy but I do have good sympathy, if someone says they're upset I'm not going to utter anything harsh to them, it's just I probably won't understand what they're going through.
As for the article and the research, yes, there are serious assumptions and misgivings going on in it.

Sharon said...

@Jean, it would be wonderful is there was an easy and accurate way to diagnose autism. It seems unlikely right now, but who knows. We definitely need a faster process of diagnosis.

I do think selective abortion is wrong as I explained in great detail here. I don't want to oppose my view on all of society but would welcome more reasonable discussion on prenatal testing among our decision makers. The ignorance of autism never fails to amaze me. I should be used to it by now but the discourse plumbs new depths regularly.

@Heike, the idea of mandatory tests is very scary. We could do with learning from history. Human diversity is a good thing.

@Phil, thanks for those great links. The position statement is particularly relevant and well argued.

@bullet, I think everyone can only really empathise when they've experienced the same as the other person, and even then circumstances are different. At best, we can only imagine how they feel. Being sympathetic and kind to others is perfectly good.

Alyric said...

Sharon

Thanks for wading through the muck. Much appreciated. I take great comfort in the fact that autism genes are so universally spread among the normal population that a prenatal test is so much wishful thinking, or more likely some aberrant genetics that people like to call autism -similar to Hannah Poling. When a mitochondrial encephalopathy can be called autism then anything can and is. Not that I don't feel for the targetteed genetic aberrants, but autism I think will remain safe.

therextras said...

My hearty agreement and thanks for voicing the serious, and scary, implications of efforts to control people and populations. Speaking of control, I've often wondered about the OCD tendencies of people who have tried to homogenize human groups.
Barbara

Sharon said...

@Alyric, the prenatal test is not imminent unless it's acceptable to those who make such decisions, that to screen out possibly autistic embryos/fetuses, they'll be willing to lose many non-autistic ones too.

@Barbara, you're welcome.

Bock the Robber said...

No Borat jokes. Promise.