Wednesday, July 11, 2007

Simon Baron-Cohen on the "1 in 58" number

Found by way of Michelle Dawson's QT board. The first is a response from The Times to the scaremongering "New Health Fears" article from the Observer newspaper:


Autism: the truth

As the leaked and incomplete results of a study on autism again raise fears among parents, the scientist leading the research tells our correspondent that the new reports are alarmist and wrong
Anjana Ahuja

If you want to stoke parental anxiety, there are few better ways than announcing a dramatic rise in the incidence of autism. That is exactly what happened at the weekend with a story that the incidence of autism was far higher than previously thought – as many as one in 58 children – with the MMR vaccine back in the dock as a possible culprit.

The story was the result of the leak of an unpublished report put together by a team of British scientists including Professor Simon Baron-Cohen, head of the Autism Research Centre at Cambridge University and one of the most authoritative figures in the field.

One of the two team members reported as resurrecting the discredited theory that MMR causes autism is Dr Carol Stott, a developmental psychologist who once worked at ARC. Baron-Cohen says she left ARC some time ago. She is now listed as a member of staff at Thoughtful House, a research centre in developmental disorders in Texas. Thoughtful House is run by Dr Andrew Wakefield, the gastroenterologist who first raised the possibility of a MMR-autism link in 1998. The other figure named as having revived the MMR-autism link was Dr Fiona Scott, who still works at ARC as an honorary research associate and runs training courses on how to diagnose autism. Scott has issued a statement denying that she privately believes in any link between MMR and autism.

Baron-Cohen says the news story is alarmist and wrong. He does not believe that MMR has anything to do with autism. “We are gobsmacked, really, at how this draft report has got out,” Baron-Cohen says. “It was only in the hands of the authors – about half a dozen people. There are three professors listed, including me, and none of us was contacted. It was also seen by two PhD students for whom I have the utmost respect because they are very careful scientists.

“I don’t believe that the MMR vaccine causes autism and I don’t believe that there are hidden environmental reasons for any rise in cases. For the moment, we should assume [any rise] is more to do with diagnostic practice.” Baron-Cohen says that health services are more geared towards early diagnosis, and there has been a broadening of the autism spectrum. Children that would have been thought eccentric or withdrawn a decade ago are now being given diagnoses such as Asperger’s syndrome, a high-functioning form of autism in which intellect is unimpaired but social interaction is compromised.

...

A definitive number from the study, the professor hopes, will be published this year. It is possible that the one-in-58 figure comes from ARC’s use of the Childhood Asperger’s Syndrome Test (CAST), a questionnaire that parents can use to assess whether their child may have autism. The ARC team has used it on Cambridgeshire children in mainstream schools. However, it does not provide a diagnosis and is known to result in a high number of false positives. Around half the children flagged up by CAST as possibly having autism turn out not to.

...

The draft report was leaked a week ahead of their GMC appearance. Baron-Cohen puts it like this: “We think it [the report] has been used. They’ve picked out the one figure that looks most alarmist.” Cambridge University is now trying to hunt down the source of the leak.

...

The National Autistic Society also quotes a figure of 1 per cent for the incidence of autistic spectrum disorders. Benet Middleton, the NAS’s director of communications, says that, having spoken to Baron-Cohen, the charity had no plans to revise its figures. Middleton says: “This is an unpublished study that has not been peer-reviewed, and there are lots of reasons why studies don’t get published. The research that’s been published and peer-reviewed suggests a rate of 1 per cent.

“The news story made a connection between two unrelated issues [the incidence of autism and the MMR vaccine]. I don’t think that was a valid connection.” Middleton adds that the charity does not advise parents whether or not to have the MMR jab, but instead directs them to their GP.

Baron-Cohen says that the results will be published eventually: “We’ve been sitting on this data since 2005 because we wanted to get the best advice. There’s a number of different estimates for this population [the Cambridgeshire schoolchildren] depending on how you count. We need to work out which figures are the most reliable.

“Research is sometimes slow but it is better to go slowly and get it right. Now things have been taken out of our hands and it’s very dismaying.”
Hmmm. 1 in 58 is one number the highest one, produced by an instrument known to identify lots of false positives used on mainstream (not special ed) kids who are all, or most, passing for normal kids (even if they are not so great at social communication) in their classrooms? This is the terrifying epidemic of kids made autistic by the MMR that they might not even have had personally since their parents would have heard of the MMR scare when these kids were babies? And this not so meaningful data is leaked by a friend of Wakefield's, and tied to MMR in an article by some guy who usually writes sports stories? Huh?

Apparently, "New Health Fears" article was a pretty important story though, in some people's minds, because Rick Rollens, "founding father" of the UC Davis MIND Institute sent it out to a list of people including Autism Diva and added his brief comment to the effect that this was more evidence of the "epidemic."



The Times also published this article about the work of Simon Baron-Cohen:

July 12, 2007
Genetics and the link between maths and autism

Autism has become synonymous with despair. The word conjures up nightmarish visions of a rocking child, locked in her own impenetrable world, unable to speak, smile and laugh with those who love her. While that is true for a very small proportion of children at the extreme end of the autism spectrum, many more individuals on the spectrum go on to lead fulfilling, even brilliant, lives.

Professor Simon Baron-Cohen has spent much of his career championing the positive side of autism. His most recent finding, to be published shortly in the Journal of Human Nature, is that talented mathematicians are at least twice as likely as the general population to have the condition. He also found, by comparing maths undergraduates at Cambridge University with undergraduates of other disciplines (law, medicine), that mathematicians are more likely than students of other subjects to have a sibling or parent with autism.

That, he says, points to genetics: his theory is that there is a group of genes that codes for both mathematical ability and autism. “This association between maths and autism keeps cropping up,” he says. Finding these maths genes could be a milestone on the way to finding the genes associated with autism. He would now like to recruit Times readers to help him find these genes. He has DNA from people who are good at maths but he would now like to be contacted by readers who are good at English but have always been numerically challenged (see panel, right).

Baron-Cohen has previously found that autism is much more common among engineers than in the general population. It is no coincidence: mathematics and engineering are very ordered, rigorous disciplines in which there is usually a right answer.

...

Baron-Cohen revealed that he had been partly inspired to study autism by his sister, Suzie, who is in her forties, wheelchair-bound and has profound learning disabilities. Apart from the first few years of her life, Suzie, who cannot speak, has lived in institutions.

He says: “Despite having no language, she has fantastic emotional contact with people, with good eye contact. Her social side appears almost unaffected. In some ways, she’s the mirror image of autism. I’m sure she has influenced my way of thinking that some aspects of the mind are independent of others.”

...



On a different note, make sure you check out this video about an employment program that Walgreen's the drug store chain has. It's pretty amazing.





Also amazing, this one from New Zealand:



See also: Russell Brown's blog.

One more note: Autism Diva is trying to take a break from blogging. So don't worry if the activity here slows down, and don't worry if the comments get shut off totally for a bit. For now the comments are open, of course.



Autism Diva
unhyphenated

14 Comments:

Blogger Matt said...

I laughed out loud when I read this:

"It was also seen by two PhD students for whom I have the utmost respect because they are very careful scientists."

Hmmm...he doesn't point fingers, but he does let us know it could only be the authors or the grad students, and it isn't the grad students. He also didn't mention that the other authors were "very careful scientists".

Matt

4:39 PM  
Blogger Grace said...

Diva,

Glad to hear you're going to take a break - hopefully it will give you a chance to rest your amygdala! ;-)

"We’ve been sitting on this data since 2005 because we wanted to get the best advice."

I'm curious since Baron-Cohen is the head guy there - any idea whose advice the doctor would be waiting for all this time? He said the public health officials are crunching the numbers - is that who he has been waiting on since 2005? Is that the normal way studies are done - researchers gather the data and public health officials sift through it or is that because of Baron-Cohen's position?

I've admired Baron-Cohen for some time now, but he has had a few seemingly rather "out there" speculations of his own. But to get to the truth, I guess you have to crack a hypothesis or two or more.

P.S. Do any of the Hub members have a medical background? I asked on one of your Wakefield posts, but everyone seems to have moved on.

10:23 PM  
Blogger Autism Diva said...

Grace,

There's one blogger who claims to be an MD. None of the bloggers submit to background checks or anything, so we take his word for it.

Hint: He's a father. He has one autistic child. He's a really nice man, too. There a numeral in his blog's title.

Autism Diva will let you figure out which hub blogger he is.

Autism Diva is not sure if he's making himself available for giving out medical advise or anything (that would be stupid, of course, no one should be dishing out medical advice on the web). If you are looking for a piece of information, whatever you want to know, you might find on wikipedia or on a university website. MIT has most of their course available online for free, you have to buy textbooks for some of the courses. Also, you can contact your own family doctor, DAN! or not and ask him or her. Personally, Autism Diva thinks it's dangerous to ask a DAN! doctor anything, but suit yourself...

Is this the SBC quote you are referring to?
"Baron-Cohen says that the results will be published eventually: “We’ve been sitting on this data since 2005 because we wanted to get the best advice. There’s a number of different estimates for this population [the Cambridgeshire schoolchildren] depending on how you count. We need to work out which figures are the most reliable."

Where did he say that the public health officials are crunching numbers?

11:19 PM  
Blogger Suzanne said...

yea walgreens!

7:33 AM  
Blogger Momcat said...

I found both articles quite interesting, but the latter, dealing with the genetic studies, was quite intriguing.
"Good at English, bad at maths?
Professor Baron-Cohen’s team are interested in hearing from readers who have a grade A or above in GCSE English and a grade C or lower in GCSE mathematics. "


Before my son had his neuro-psych evaluation, he was informally diagnosed by his school's psychologist, with NLD. I wonder if NLD will also be making it's way into the spectrum in the near future.

9:25 AM  
Blogger LIVSPARENTS said...

Ditto for Walgreens. If you want to help continue things like this, IMHO, vote with your dollars! Switch to Walgreens when you can. Here's their Outreach site if anyone would like to peruse it:
www.walgreensoutreach.com

9:25 AM  
Blogger Vandychick said...

I am a prime candidate for Baron-Cohen's study on people who are very good at English, bad at math.

My score on the English part of the SAT's was nearly a perfect 800, but the total score was only like 1250. You do the math on that score imbalance.

I have had servers in restaurants add up the tip for me because I was taking too long. This is just simple addition, but it can be a struggle for me.

Too bad I don't live in the UK--I would love to be a part of the research.

I have always wondered about whether there is a proper name for people who are as bad at math as I am. Is it NVLD?

10:30 AM  
Blogger Bev said...

"One out of 58 cats is now neurotypical". Also, (sorry) I am tagging you for the Eight Random Things meme.

http://aspergersquare8.blogspot.com/2007/07/did-you-say-8.html

4:18 PM  
Blogger zu said...

Please don't tell me I'm the only one who had to look up "gobsmacked" in the online dictionary. Although, truth be told, I vaguely remember having to look it up years ago, probably the last time Baron-Cohen uttered it.

I wouldn't be surprised if a 1 in 50 statistic is verified. I've either volunteered in or worked in local schools for several years and that's the number I come up with, when I combine actual known diagnoses with my totally unscientific but amazingly correct eyeball method of armchair diagnosis. Then again, it could be the neighborhood. ;)

ASDs run through my family and only some have high math skills, including my both my sons, only one of which has Asperger's. Perhaps the math is like so many things that "run alongside" autism in families.

10:58 PM  
Blogger Grace said...

Thanks for the info, Diva!

The info about Baron-Cohen's number crunching remark came from the original article that was linked at Michelle Dawson's page which you had linked in your article. Straight forward enough? ;-)

As far as my question about bloggers with a medical background, I didn't necessarily mean an MD, though that would certainly be included. (Your guy has a nice blog, btw - I enjoyed perusing some of his articles)

Everyone's blog comes from a perspective that is colored by their professional background to some extent. I was looking for something in that vein; I'm looking for a certain type of info - and someone who might be able to answer some of these questions I've been asking - not medical advice.

I'm not sure where I can find an MD that can help us at this point. My family dr (& the 2 before him) is competent in ordinary matters, but totally useless on anything having to do with autism. The ignorance is extremely frustrating. They either blow things off or they want to use drugs. I'd rather address my children's problems where possible than pretend they're not problems or try to cover them up.

As I said before, the DAN guy we went to is the first person who was able to give our children any help. And no, he never promised to "cure" anyone of anything. All he talked about was trying to alleviate the problems that were making it harder for them to function optimally & he has helped with a lot of them.

We've gotten rid of chronic stomach aches, so-called growing pains in the legs, pale skin with dark circles under the eyes, and reduced brain fog considerably, for example. This DAN guy has been a great help, but he's not an MD and the tests & supplements are not covered by insurance. The tests & the supplements are what eats up a lot of money fast - next to those our DAN's fee is a pittance.

Why is insurance happy to pay for a lifetime supply of ritalin, but not an omega-3 supplement?

12:44 AM  
Blogger Autism Diva said...

Grace,

Hopefully by now you realize that anything from the original article that referred to Simon Baron-Cohen and what he thought or did was made up. What you seemed to attribute to SBC by way of that Observer article was a lie. Not your fault for misunderstanding, but anyway, it was a lie. SBC et al weren't waiting for the health dept. to crunch numbers or whatever was claimed.

12:58 AM  
Blogger Grace said...

Nope, not the Observer article - the one from the Times which your blog article discusses (8th paragraph, last sentence):
Autism: the truth

1:20 PM  
Blogger Autism Diva said...

Autism Diva apologizes, Grace. She didn't take the time to sort out the quotes from the articles. The quote you are referring to is vague, so maybe you could write to SBC and ask him. He's pretty good at answering folks.

But, Autism Diva's guess is that he was getting some kind of general advice, that is his group analyzed the numbers from his Asperger's syndrome, social communication problems survey thing, and then they passed the data on to the health department to get them to look at some angle of it. SBC made it clear on his Cambridge U website that he doesn't believe MMR causes autism, why would he, given the fact that Wakefield made the whole thing up? And SBC seems to be pretty big on the autism-runs-in-families thing and not into looking for "environmental" causes and he doesn't seem to believe in any kind of "epidemic"... so it's unlikely he took his data to the health dept thinking they'd find an environmental cause of autism using his survey data looking for social-communication problems.

1:29 PM  
Blogger Don Cox said...

"mathematics and engineering are very ordered, rigorous disciplines in which there is usually a right answer."____Only at the elementary stages - say, up to first year degree level. The study of grammar is also an ordered and rigorous disciple in which there is usually a right answer. My guess is that if anything "good" correlates with failure at maths, it will be high social skills, not English.

3:56 AM  

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