autism screening?

[Heathcliffscathy]

really?

front page of guardian today

jute - I agree completely with your point about the total lack of value placed on severe autism. This was what made me cross when I heard the item on Radio 4 last week where the person interviewed said 'Some people with autism have no language, epilepsy.....however some have a very developed interest in a specific area like music and may be able to make a contribution'

This annoyed me intensely and I found it offensive. It heightened my concerns that these screening programs are sod all to do with parental choice and have their roots in the government wanting to exterminate those deemed unable to 'make a contribution'. It was a very unpleasant realisation

sorry - lots of typos

electra - am

Yes I'm finding many of the reports pretty offensive too electra. It was brought home to me at a recent conference -how little is known about severe autism, when I realised I was talking a different language to almost everyone else there. I recently searched the literature of the last 10(ish) years. There have been 1000's of papers published on autism in that time (over 1000 a year at the moment) - I could find 37 on severe autism.

I read this in The Guardian today and it made me very sad, and a bit worried. The Guardian article had SBC saying that we needed more discussion now, since the suggestion of a testosterone link raised the spectre of testing and thus possible termination.

They did mention the fact that there was a worry that it might lead to even less support than exists at present, which I worry about too.

I drew the conclusion that the research is still in v. early stages but the issues and possibilities it brings are pretty alarming.

And most of those were single case studies of a behavioural treatment in a classroom. There was one on sensory-perceptual processing (probably the key to understanding the severe end of the specturm). One.

Yes, the person talking seemed to have no idea that what he was saying was shocking for someone like me to hear. I am very saddened to think that one day people will be terrified to have a child like mine and will be encouraged to be too. For me it has been such an interesting experience to watch her grow and appreciate all the unique things about her. And she enjoys her life very much.

Exactly.

But research into factors underlying conditions such as autism are likely to lead to this kind of debate, because some factors might be able to be detected in utero. The problem is with the tone of the debate itself I guess.

Although it will always be difficult won't it? I feel that way when I see threads about terminating a pregnancy due to Downs Syndrome and then someone like Thomcat comes along and describes her daughter...

Jute, I'm glad you posted that this is mainly about SBC's area of research because I was a bit confused when I read the report.

Wasn't there another report v. recently that suggested that there were multiple factors involved in the autistic spectrum? That "autism" could be multiple factors coming together?
Somehow, that seemed to make sense to me.

Did I misinterpret that?

I have always declined anti-natal screening (although I had scans) because for me it's very invasive and I don't like the way choices are presented afterwards.

It will be in some cases zen- but it's a hugely variable condition.

Broadly there are 2 genetic types. One you see the broader autism phenotype in family members, seems to be many genes involved, appears to be associated with AS/HFA, you might have several children with autism in the other family.

The other type tends to be found in more severely affected individuals. Seems to be caused by one gene. Might involve a trigger event at least in some circumstances (for example a viral infection during preganancy- maybe a very mild one- which then sort of primes the fetuses immune system so that a second trigger infancy (various potential triggers have been mentioned) can set off autism.

When I heard SBC talk he was talking about Cambridge maths graduates which is so far from the sort of autism I work on/with as to be entirely different things tbh.

Unforunately there seems to be a view that severely autistic kids don't do anything that interesting so why would be bother using money there.

I don't like the sound of this at all. It's the whole idea that somehow a person is only worthy enough to be allowed to be born if they are deemed able to make some arbitrary "contribution". I find the idea of a hierarchy where a child with HFA or AS is somehow more worthy than a child with more severe autism or DS bloody awful tbh.

But that's how it's being spun. Baron-Cohen said there are the same ethical issues across the autistic spectrum. And we allow (later) termination now for conditions which present a range of severity. I agree with you about the hierarchy of worthiness, but screening in itself doens't create that.

awful. And of course there will be many people who would.
you know what else angered me about that article?

""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."

Nice. So it's a good idea to abort for ds, but not for autism because they might actually be worth something?

I have 2 with autism, btw, not ds. Bloody offensive if you ask me. I would imagine anyone with children who have ds will be spitting feathers right now.

I completely agree Hecate.

But as I said before, I think it is an inevitable consequence of learning more about the condition and what underlies it.

Which is surely Baron-Cohen's point. THe time may well come when there is a screening procedure available. SO what we do with that as a society needs to be debated in advance.

Hmm- SBC does seem to be lacking the gene for tact...

This weekend (while dd2 is at her dad's) I have stripped all the wallpaper in her room because she had started esting it,
and painted it yellow (seems to be her favourite colour),
got her a sturdier bed so she can't upend it to stand on and reach the lightswitch,
Got rid of said lightswitch and put in a dim nightlight she can press herself,
and (my piece de resistance) attached a twangy doorstopper thingy to the wall next to where she will sleep, so she can ping it to her heart's content and soothe herself to sleep.

There is more, but you get the idea! Anyway, my point is I am thrilled at the thought of how much it will suit her and help her relax. She won't grow up to pay any taxes, but she is a happy, lively GORGEOUS (heartmeltingly so, people stop me in the street to comment) little bag of monkeys- and I don't give a shite if people think she doesn't contribute, because the world would be a slightly smaller quieter place without her. So stick that in your pipe and smoke it, Simon Baron-Cohen!

"is it cos I is disabled?"

Thank you Jute. That was really interesting.

Pragmatically, I think SBC is right just in that we are going to have to debate this.

I find it brilliant that this thread is so positive towards variety; the idea that abandoning some lives as worthless is appalling. And that so many people seem to share my view, which is that a lot of judgement about whose lives are valuable is motivated by economics. And that is wrong.

Are we in a minority or will our view prevail?

I don't have a child with AS/ASD diagnosis but I do know a lot of children with said diagnoses and friends who are disabled in a variety of ways. The idea of those people being missing from my life always chills me.

the whole "contribution" line of argument is so depressing, life shouldn't be valued by amount of tax paid/capacity to spend on consumer goods.

Agree Total
It ignores a secondary contributionthat people have - which is their affect on others.
I am a far better mother and person than I was before I met DS2.
Dh dealt with his shock at DS2 regression by becoming frenzied bread winner ( his alpha male response was to protect and that translated in his head to financial security ) . As a consequence of this drive he has hired more staff and paid humungoid amounts in tax.
DS1 has become a very responsible young man with a huge social concience who does add to his community.

I don't know what we would have been like in an alternate life with an NT DS2. But we know that he has a very positive effect on us and many of the people who meet him.

www.guardian.co.uk/commentisfree/2009/jan/14/autism-health

sorry from an autistic girl herself