Should we seek to screen for autism?

The news about the latest autism research, which raises the possibility of screening to test for autism, has kicked off the expected debate about whether parents should be screening their children for autistic spectrum disorders. Proponents of autism screening (which is not available yet) say it would allow parents to prepare and educate themselves for the challenges ahead. Opponents say it could lead down the nasty path of eugenics, even depriving us of autistic geniuses (a pretty rare occurrence - only 1 or 2 out of 200, according to this story in the Guardian). But arguing against screening because the unborn baby may be the next Rain Man misses the point.

The impact of screening is important - in America, about 90 per cent of pregnant women given a Downs syndrome diagnosis have chosen to terminate. In Britain, the percentage is not so high and may be reversing, Magnus Linklater writes in the Times today. Sobering numbers.

The problem with screenings isn't that parents know the health (or gender) of their baby beforehand, but that they hold attitudes and are worked on by factors that make coping with the child unbearable. Being female isn't considered a disability (unless, maybe, you're Howard Stern) yet in certain communities or parts of the world, people regularly abort girl fetuses because of dowry demands or the relative "worthlessness" of girls.

It's better to change the attitudes that rank some people less valuable from birth than pretend that by withholding that information until after birth somehow benefits both child and parents. It's also important to recognise what some people believe: "a damaged baby is a damaged family" as Minette Marin argues and that for some families a disabled child will be too much for it to bear.

Let's work on supporting families coping with disabilities - with money, services and understanding. That includes promoting scientific advances that teach us more about those conditions.

Comments

[oneopinionatedmother]

@ jean jones - i see i needed to sub-edit my post!! no excuse but my toddler is being ratty after her jabs

[oneopinionatedmother]

@samantha

my tuppenth worth is that screening for autism is a slippery slope that

what? unlike screening for CF or Downs? hese haven't lead to the atrocities you suggest.

@eluned -
Nhe nazis were bunch of evil senseless murderers. To compare the a pregnant woman who aborts her pregnancy on the grounds of disability to them is to say the least unreasonable and lacking a sense of proportion.

@jean jones - i wish all the Asbergers people had read your post before posting - it does look alot like comparing short-sightedness with blindness, doesn't it?

to the auth of the above article- there is no down turn in the percentage of abortions for DS - are you repeating previous misreporting by the BBC?

see - http://news.bbc.co.uk/1/hi/health/7746747.stm

"Figures showed that the proportion of women deciding to terminate after finding out their child was likely to have Down's had remained constantly high, at 92%, since testing was introduced"

[Samantha]

Some really interesting comments here - my tuppenth worth is that screening for autism is a slippery slope that can only lead to more sinister 'abortions' and the like. There awas an article on gurgle recently that was about the same subject. I think it is our generations responsibilty to ensure that we don't ruin future lives by allowing this sort of thing to continue.

[mb]

Without question, there should be a mandatory blood sample taken from the child before (i.e just before the vaccination is injected) and after each vaccination shot is administered.

These blood samples must be timestamped (date and time).

This will be the only way that doctors can feel confident with the product they are administering and the only way that parents can feel comfortable with what happens in their own child's body.

Also, doctors should only be administering vaccines if they can "guarantee" the parents of the child receiving the vaccination that (a) the vaccination is 100% safe and will not harm the child's health in any way or (b) that if they administer the vaccination and there is a complication with the child's health that hey can "fully reverse any problems that occur with the child.

[joanne]

My 3yr daughter is half way through her autistic diagnosis with a team of 10 specialists,I know, as I have known for a long time that she will be diagnosed as being autistic, proberly aspers.
Reports like this are not helpful but very hurtful,I would not change a single thing about her,she is what she is,a lovely, clever ,very pritty girl,
she is also much better at some things than my other children were at her age,such as counting,colours,getting dressed and loooking after herself,somethings she isnt so good at,such as still in nappies and doing as she told ,
but she is a happy clever child and how dare anybody imply that children like herself, may not be welcome in this world,who do they think they are "god"

[M]

I keep hearing from commenters on these blogs that how it is only a few children that a high functioning, well that is not what it states on the National Autistic Society. It states that over 50% of autistic people are high functioning. Yes and some may have LD's but so does a quarter of all schoolchildren at some stage in their school career. It varies and depends on the individual.

I understand why we need a debate in some ways, but the way in which this has been handled is pretty shabby, particuarly the article by Carol Sarler. I'm glad that kid gave her a kick - he probably sensed what she thought of him!

[Helen Baxter]

Both my husband and I have Aspergers and have worked on award winning web & TV projects. We run a media production business together, and are blessed with both creative and technical brains.

We have wonderful friends and a very happy life together in New Zealand. We just happen to have been born with a slightly different brain wiring that makes some things very easy for us, and some things more difficult. I'm very happy to be an aspie as it is the source of my creativity.

My only wish is that I had found out before my thirties then my teens might have been a lot easier. It would also have helped my parents in dealing with a quirky kid.

[Jean Jones]

Sorry to Carol Midgley - the author of the DM article was in fact Carol Sarler. My mistake.

[Jean Jones]

Much though I'd like to bask in the compliments I've been given above, I feel I must say that I am really nothing special cf most parents of disabled children that I know. Having a disabled child isn't something anyone chooses, but the huge majority who have drawn this particular short straw do, after the initial shock, get on with it in a low-key, undramatic way, because there is no alternative. The ones you read about in the Daily Mail and elsewhere are the ones who choose to make a fuss about it or who haven't accepted it. That article in today's DM that Caitlin highlights in another post is an absolute disgrace to journalism; if i had read that article when my son was younger and I was less confident that we were going about things the right way, I might well have attempted suicide by this stage of the day I read it. Carol Midgley should be deeply ashamed of herself. She MUST know that what she describes is out on the far, far extreme of the spectrum; I have NEVER, in all the years my son has been at a school for children with autism and severe learning difficulties (that is, both simultaneously, not autism OR SLD), come across a child as severely autistic as that. I'm not doubting that they exist, but they are very rare, and when they do come along there is lots of help to be had with them. I am really quite angry about the DM printing it, but what can you do?

I suppose IMHO all anyone can do when they get into the situation of having a disabled child is to try to keep your head, don't believe in miracles because there aren't any, and that includes swimming with dolphins and weird'n'wacky Programs that require the raising of thousands of pounds, take the help that's offered even if it isn't exactly what you think is needed, on the grounds that any help is better than nothing and it keeps the door open in case something better does come along, and as Churchill said KBO. Not glamorous, but it works, in my experience at any rate.

[Louise]

I agree with Dragon, the first posting in this debate, that we must first turn our attention to early assessment. My Cousin was not diagnosed as on the Autistic spectrum until she was in her 20's- and then only after I met someone who had similar problems with going out and coping with the world, greatly helped after his diagnosis, and suggested that my uncle ask for an assessment. She had seen numerous health professionals over the years yet none had thought of autism! If she had been assessed early this would have made the whole family's life so much easier.
The comments on this page do suggest a genetic link as so many people have more than one autistic relative. My grandfather, a very intelligent man, was regarded as eccentric and probably had a mild form of aspergers, and I do sometimes suspect that my mother (also highly intelligent) does too. I did not give my children the MMR booster vaccine because of the scares at the time (15 years ago) but have now brought the vaccine up to date as I am satisfied the suggestion of a link has been totally discredited. I don't believe the vaccine existed when my mother and grandfather were born....
There is such a distinction between the different ends of the spectrum...I suspect there are many more 'eccentric' and clever people who are at the high functioning end of the spectrum than we could quantify, and the world would be a worse place without them.
My cousin is not very high functioning, has mild learning disorders, and will never be able to live alone, but she is funny and loving and none of the family (especially her parents) would ever be without her. That said, I do realise that others have a very different experience

[Lucy w/o K]

Jean Jones - what Mumoftwo said. I think you're wonderful, and I particularly appreciate you taking the trouble to discuss your experiences so candidly and calmly. Thanks, very much.

[mumoftwo]

Jean Jones, you don't come over remotely martyrish, you have nothing to apologise for. Your insights into what it's like to live with an autistic child and grow up with them are incredibly interesting and moving (this isn't pity, it's interest in an experience which is not my own). As my rant in the other thread states (I should have read this one first, but I'd got cross by then), you are spot on that there is no test for severe, life-altering autism, as indeed there is no test for any kind of autism, so currently, you couldn't make that choice. Plus, there is not one 'gene' for autism, but possibly tens or even hundreds that may interact with each other or the environment. Perhaps one day we may untangle all of this, but it is very complex, and tests and screening are not really on the horizon, except in a hypothetical 'wouldn't it be great if...' (or not) way.

[Jean Jones]

...and having thought about it more overnight, specifically the fact that when needled my first reaction was to say 'it's been extremely hard', I suppose what that must mean is that IF prenatal screening had been possible, and could indicate, at an early stage of pregnancy, that the potential autism was severe enough to affect the child's ability to lead a life approaching normality, we might well have decided that we couldn't cope with an autistic/LD child. But it would have had to have met those conditions, and what is being suggested does not. And i still maintain that having even a severely autistic child is not all negatives. It changes you, but not necessarily for the worse.

SM - I am very intrigued as to what you think you might have done if one of your children had turned out, at 18 months or so, to be severely disabled. Is there another solution apart from the one I took? A workable one that takes into account what is possible and what is best for the child?

[Jean Jones]

Oh damn, I've done the martyr thing again. Sorry, sorry, sorry. I hate doing the martyr thing and I hate people who do it. My point should have been that nobody I know has ever *chosen* to have a disabled child -in fact I spent all 3 pregnancies terrified of having a Down's child, which is a bit ironic now, as given the choice I'd now go for Down's every time, if I had to have a disabled one, but I couldn't see any further than that back then - but that when they come along you do what you have to, and in the current state of knowledge there is no way of avoiding having an autistic one in any case, so it's all academic. Sorry for getting maudlin. I will try not to let it happen again.

[a.boyce]

I think women should be screened during pregnancy.I have 2 autistic children.If I had known I wouldnt have aborted them but it would have given me the chance to find out about the condition,thus enabling me to care for these children properly.I didnt know anything about autism and couldnt understand why they were deleyed etc.Now social services have accused me of poor parenting,and have taken all of my children into care.Autism was never considered.Its only since my children have been in care i found out they have autism.Getting your child assessed is hard enough these days,never mind getting a diagnosis.If i had known my children had autism,i would of been better able to care for them properly and made sure we got the right support etc.

[Jean Jones]

I wouldn't presume to opine on deaf people wanting deaf children because I don't know much about the topic. But from a position of a lot of knowledge of autistic people I would say that a)I don't know any method of deliberately conceiving an autistic child; and b)if you had walked even a quarter of a mile in the shoes of a parent of one, SM, you wouldn't talk flippantly about it. Having a severely autistic/LD son and bringing him up to adulthood has been very, very hard, and quite frankly I am proud of my family for having come through the process intact and still all quite liking each other. I can assure you that if you had had one your life would have been very, very, very different and a lot of your more fixed ideas, not to mention the choices about work/life balance that you are so fond of telling us about, would have gone straight out of the window, because you would have found that it wasn't just so easy to find people to take the child off your hands for 10 hours a day so you could do what you preferred. You think childcare is expensive for a normal child? Ha!

I didn't say, or mean, that it was at all desirable for more disabled children to be born. What I do say is that when one comes along it should not be got rid of without question, because its life is not valueless. And the way things are at present, autism ISN'T able to be spotted at an early stage, or indeed any stage of pregnancy, and I really cannot see anyone choosing to cull their child when it does show up, typically at the age of 18 months to 2. How can I put this without getting personal about it? - it would be really nice if you could try to put yourself, occasionally, in the position of people whose lives have worked out differently from yours and who have not, for reasons unconnected with their own inadequacy compared with you, had all the freedom to choose that you have.

[delilah]

Helena Karlsson said: What do we do, by the way, with those babies that turn into thugs or disruptive children or children with special needs? Those specimens that made it through the first sorting out but later turn out unsatisfactory? Will we deal with those children in the same way as Nazi Germany did?

Nazis _were_ thugs and disruptive. They did not address the problem of themselves, they were the problem. I can remember people saying, many years ago when arguing for abortion, how nice it would have been if Hitler's mother had aborted him....

[Lucy w/o K]

Supermother - what's your point? I've not heard of anyone who wants to conceive an autistic child deliberately. You seem to be dragging in a criticism of people who want to select for deafness in their child, no? Which is quite different, because the vast majority of people who've been deaf since birth don't lean on the help of 'normal' society in the way that you imply. To lump them in with Down's is a bit rude, surely.

[Supermother]

"I would never advocate the deliberate conceiving of a child who was going to suffer, but I don't know many learning-disabled people who do suffer."
So you're saying you disagree with me and that if parents deliberately want to conceive a deaf or autistic child they should be free to ensure the right embryo is implanted to ensure that?

Of course people love their children however they are but that's not the same as saying it's desirable that more children with disabilities are born. If 90% of children were down's for example the planet would be in a bit of a mess.

[Jean Jones]

Oops- that last phrase should of course have said that I can't see why anyone would NOT take the tiny risk as opposed to the big one. Sorry.

[Jean Jones]

Not wanting to harp on about vaccines, but...

I accept that no procedure is ever totally risk-free. No doctor, with syringe in hand, is ever going to say to a parent 'I guarantee, 100%, that there will be no side-effects whatsoever from this vaccine'. But that is true of everything. If I stayed in bed the whole time to avoid the risks of getting up, or worse, going out, I'd be risking a heart attack from being fat and inactive. But the difference with vaccines is that they confer PROVEN benefits, in that they prevent diseases whose statistical risks of long-term damage or even death are far, far higher than those of the vaccines. What i am saying is that, like most parents, I choose to take the tiny risk of vaccine damage in order to avoid the much higher risk of my children being damaged or killed by diphtheria, polio, tetanus or any of the other diseases prevented by them. Parents who do not vaccinate their children are of course relying on other parents to take that tiny risk on their behalf so as to achieve herd immunity which, they calculate, will protect their unvaccinated children. So they are relying on being in a small minority of parents who don't vaccinate, otherwise you get into the situation we are now seeing with MMR, where the proportion of unvaccinated children is high enough that herd immunity is breaking down.

That is a separate issue from whether vaccines, in and of themselves, cause damage. I agree that it is at least a possibility that that might be the case. But if so, the risk is minute cf the risks from the diseases. It has never been scientifically demonstrated that vaccines cause autism in any case. Therefore I, and most parents, choose to take that tiny risk for the sake of my children's safety from disease. I would like to say that herd immunity is a factor too, but to be honest it's more of a side benefit when you DO choose to vaccinate. But for parents who don't choose to do so, the danger of a breakdown in herd immunity gets bigger and bigger as their numbers grow, and so does the risk, therefore, of their own children becoming ill and possibly being damaged. So, statistically, the risk is much greater to their children than to mine.

What I am saying is that, weighing up a tiny and unproven risk of vaccine damage against a much bigger and very much proven risk from diseases that can kill or cause permanent damage (and remember, this isn't 'just' measles - it's polio, diphtheria and tetanus too), I can't see why anyone would rather take the tiny risk than the big one.

[Lucy w/o K]

I agree with Poppy ... I guess from the point of view of Baron-Cohen and other researchers is that, in the course of scientific study of the autistic spectrum, he or someone else may identify one or more genetic markers that could be tested for in the womb. I sincerely doubt anyone is researching in the hope of finding the marker *in order* to make terminations of autistic spectrum pregnancies possible. I just wanted to point that out because a few people posting seem to think there's already some way of testing, or that there's been a deliberate attempt to find one.

[Poppy]

I wasn't going to comment, but I wanted to point out a book that may interest you, Jean Jones - 'Fear of the Invisible', by Janine Roberts. It's the result of ten years' worth of investigating, is extremely factual and well-referenced [all of which are verifiable and searchable on PubMed and such like], and provides a firm argument for the 'anti-vax' side.

I speak as both a healthcare professional who has read enough to convince me that vaccines are far from the holy grail they're presented to us as, and as a person with Asperger's (which, I'll add, was not caused by vaccines but genetics and sheer dumb luck!).

Beyond that point, I agree wholeheartedly with what you're saying. This is a spectrum, and as such several things worry me with the idea of screening for autism:

1 - That it's a spectrum, as you rightly pointed out. Nobody knows where on the spectrum a person can land. They could be high-functioning, they could be low-functioning. They could be reliant on others for life, or they could live a wholly independent life. You just never know where a person will be, so to abort for 'autism' is to perpetrate not only eugenics (in my opinion) but to ignore the glaring fact that although disabling for some, for many others it's nothing more of a quirk than blue eyes or brown hair.

2 - With that in mind, it's also important to note that - again, as you rightly pointed out - people with autism rarely 'suffer' themselves. I know a lot of people on the spectrum, both high and very low functioning, and even if these people appear 'trapped' in their worlds, many are very happy to do their own thing. You can't put a price on human life, and you can't decide for another just how they feel.

For example, I get sick of being told that because I have Aspergers I must be 'suffering' and need 'curing'. I'm in a long-term relationship with a great partner (non-autistic). I have a huge group of close friends. I've got three university degrees, and did extremely well at school. I've got a full-time job I love, and I socialise and party with all the rest.

That's not to say I don't find things difficult at times, and my childhood was certainly challenging, but you learn to cope, as I'm sure you know. I take things too literally, I need time on my own, sudden change throws me out and can leave my head spinning still... but you learn to cope.

On the other hand, my brother is also extremely popular and happy, but he's partially non-verbal with Aspergers as well. He talks to some but not to others, but he doesn't suffer, and he's extremely quick-witted, funny, intelligent, and has a great circle of friends.

You just never know where you'll be on the spectrum.

3 - This also feels to me as if it's something that's going to add to the struggle a lot of people with ASD face already. There's already so much prejudice and ignorance against people on the spectrum (we're all geeks, 'retarded', dumb, Rain Man, sit in the corner rocking and flapping, savants, suffer, trapped in our own worlds etc etc) that to tell people it's something worth aborting your for is hardly going to help quash those stereotypes we fight so hard to beat.

Anyway, just my thoughts...

[Jean Jones]

But Eluned, what you're suggesting is that I should take the views of a person who has no qualifications in the field as being of equal validity to those of people who are highly qualified and experienced in medicine. I know (as opposed to believing) that vaccination works in doing what it sets out to do, ie preventing people from getting various illnesses. I know this partly because people who know a lot about medicine tell me so, and partly because the experience of 200+ years shows that it is so. This woman whose views you are recommending is an amateur. She may be a scientist, but rocks are not people, and if you make a mistake about a rock it's not quite the same thing. Everybody is entitled to an opinion, but nobody can expect a relatively uninformed opinion to carry the same weight as a highly informed one. I take your point that the book may well serve as a good introduction to the arguments against vaccination. That doesn't, though, mean that those arguments are necessarily cogent ones, and since I am not a doctor, I choose to take the advice of qualified and experienced doctors, rather than amateurs, however enthusiastic, about health matters. It's too important a matter to do otherwise, IMO.

[Jasmine]

The decision to terminate or carry a pregnancy to term is the sole decision of the potential parents. No one has the right to enforce their beliefs, wishes or desires on any couple facing that decision. Whatever your personal experiences of autism, learning difficulties or disabilities, or your beliefs about what does and doesn't constitute a "reason" for termination, you do not have the right to impose guilt-ridden, overly-emotional clap trap on couples considering their (and their familiy's) future.
Informed and individual decision making is all that is required and all that is relevant in relation to this discussion. Eugenics being raised as part of this thread is pure Daily Mail-ism.