Discovering I Was Toxic
The NYT: Crypt Keepers of Autism Journalism

Simon Baron-Cohen: ‘Thinking differently about autism*.’

Simon baron cohen By John Stone

I fear things are different between the United States and Little Britain. In the week we learnt that the Inter-Agency Autism Coordinating Committee (IACC) is to commit millions of dollars of research money to investigating the potential environmental and medical triggers for autism,
(David Kirby, HERE) and  a re-examination of the California autism data revealed 7 to 8 fold real rise in incidence between 1990 and the  present (UC Davis HERE) in the United Kingdom, Prof Simon Baron-Cohen, of the Autism Research Centre in Cambridge  (said sometimes in the UK media to be the world’s greatest authority on autism)  is examining the prospects for screening in the womb for autism.

A statement on our National Autistic Society homepage (January 7, 2009) welcomes such research and emphasises its alleged positive advantages, such as being able to plan better support earlier for infants with the condition.

“Without the right support autism can have a profound and sometimes devastating effect on those affected by it. Screening to identify autism at an early stage has the potential to radically improve the quality of life if the right environment, education and support can be put in place as soon as possible.” (HERE)

Although early diagnosis offers some advantages, suggesting that it can “radically improve” anything about autism is a wild overstatement. What is actually needed for radical improvement in this regard is a thorough assessment of demand for services on a population basis, so that full support can be obtained at the point of diagnosis. It seems altogether fanciful that the specific needs of  an infant 3 years hence could be diagnosed in the womb.


However, the article by Baron-Cohen on the BBC website to which it responds has a very different thrust -  ‘Autism test  could hit maths skills’. Baron-Cohen writes:

“But assuming such a test is developed, we would be wise to think ahead as to how such a test would be used.

“If it was used to 'prevent' autism, with doctors advising mothers to consider termination of the pregnancy if their baby tested 'positive', what else would be lost in reducing the number of children born with autism?

“Would we also reduce the number of future great mathematicians, for example? “
(BBC HERE)

It is abundantly clear that the proposition he is addressing is that foetuses at risk from autism might be aborted (or possibly treated). What apparently concerns Baron-Cohen in presenting his argument against a eugenic solution to the autism question is that because there is an association between autism and mathematical skills screening out autism might also prove damaging to the gene-pool in other respects. But if it was shown that you could weed out autistic foetuses without threatening the mathematical skills of the population, what then?

While I don’t believe that there will ever be any effective genetic markers for autism, if you happened to be autistic, or had a loved member of your family who was, you might just find this sentiment chilling and unrepresentative of your concerns. Given the air of embarrassment in the NAS response  –  which shifts the ground of the discussion  - perhaps they ought to consider whether Baron-Cohen should remain as one of the organisation’s vice presidents?

On top of this we discover that the University of Bath’s investigation into the sexual preferences of autism fathers  - which has caused much mirth both in the columns of the Daily Mail and on Age of Autism  -  was also undertaken under the auspices of the Cambridge Autism Research Centre, and inspired by Baron-Cohen’s  Assortative  Mating Theory. A poster on Age of Autism, “Jack” reproduces an email circular he received from Baron-Cohen’s Cambridge Autism Research Centre:

“Thank you for being registered with the Cambridge Autism Research Centre volunteer database at CAMBRIDGE AUTISM RESEARCH CENTRE We have been asked by Dr. Mark Brosnan at the University of Bath to send the advert below to parents of children diagnosed with an autism spectrum condition. Please rest assured that none of your details have been passed to Dr. Brosnan.

“If you would like to take part in the project, please go to the website http://www.drianwalker.com/parentsurvey/  

“If you have any questions about the project, please contact Dr. Brosnan M.J.Brosnan@Bath.ac.uk
Best wishes,
Sally Wheelwright
Deputy DirectorAutism Research Centre

“BATH UNIVERSITY ASSORTATIVE MATING PROJECT"

“We are emailing to invite you to take part in some exciting research being conducted by researchers at the University of Bath. We are examining psychological similarities and differences between couples (such as husband and wife or 'partners'). We are focusing upon partner preferences for body shapes and, where the couple have children, we are also focusing on how these psychological similarities and differences may relate to family structure (e.g. number of biological sons and daughters) and autism spectrum conditions, such as autism and Asperger Syndrome. The body shape images include photographs of women in bathing suits and cartoons of naked men and women from behind. The images have all been used in research before but if you are likely to find them offensive please do not take part. The questionnaire does not take long and we would be very grateful if you would take part in this project by clicking on the web link below (you my need to cut and paste the link into your search engine). Anyone can take part, as long as you are 18 years of age or older. More information will be provided after the questionnaire is completed. Many thanks in advance. (PARENT SURVEY HERE)/ “(see AGE OF AUTISM ON THE STUDY HERE)

Now, not only is this apparently feeble minded and trivialising a serious issue – and using public money to boot  – it could not begin to furnish any useful  explanation of a 7 or 8 fold rise in the incidence of autism since 1990.  However, this seems to have been one of the motivating ideas behind the hypothesis  - as recently as November 2006 Baron-Cohen wrote:

“Autism has skyrocketed from a rare condition of only four in 10,000 children in the 1970s to an astonishing 1 percent of children today. This massive change undoubtedly reflects improved recognition of the condition and consequent growth in services. In addition, even the way in which we conceptualize autism has changed, from being a discrete category in the 1970s—you either had autism or you did not—to a spectrum condition that acknowledges degrees of autism. Therefore, the boundary between those who have the diagnosis and those who do not is a fuzzy one, leaving room for clinical interpretation.

“But could the apparent rise in the prevalence of autism also in part be the result of assortative mating of two strong systemizers? Is it possible that over and above the effects that social and clinical factors have had, assortative mating of two strong systemizers has become more frequent?

“Consider that in the late 1950s, less than 2 percent of undergraduates at MIT (a university that caters to people with good systemizing skills) were women. Today female enrollment has jumped to 50 percent. This microcosm is just one example of how society has changed in ways that would bring strong systemizers into greater proximity. Over the same period, air travel has also meant far greater opportunities for people from widely differing backgrounds to meet, possibly brought together by their common interest in systems. Finally, over this same timeframe, individuals who are systemizers have enjoyed new employment opportunities as the result of the digital revolution. Where 50 years ago a strong systemizer might have found a job as an accountant, today every workplace needs computer-savvy employees, and the financial rewards for good systemizing skills can be immense.

“The contribution of assortative mating to the changing prevalence rate of autism is difficult to study. It is also controversial: the idea that a child with autism is the result of the unique mixing of genes from parents who share a common feature sits uncomfortably with those who want to believe the cause of autism is purely environmental. But I believe the preliminary evidence in support of the theory warrants further research. We stand to gain valuable insight into the cause of autism; and given the links between autism and the capacity to systemize, a trait that has helped humans to dominate the planet, we stand to gain a better understanding of human nature.”(SEED MAGAZINE HERE)

On the other hand, drawn into the Observer dispute, over the causes of the rise in autism in July 2007 he wrote:

“My view is that any apparent rise is likely to be driven by better recognition, greater awareness, growth in services, a widening of the definition of autism and a shift towards viewing it as a spectrum rather than a categorical condition.”
(GUARDIAN HERE)

But this does not seem to be a matter he can resolve: he wrote in the Guardian in 2005 in his role as “a leading thinker”:

“I believe that the cause of autism will turn out to be assortative mating of two hyper-systemisers. I believe this because we already have three pieces of the jigsaw: (1) that fathers of children with autism are more likely to work in the field of engineering (compared to fathers of children without autism); (2) that grandfathers of children with autism - on both sides of the family - were also more likely to work in the field of engineering (compared to grandfathers of children without autism); and (3) that both mothers and fathers of children with autism are super-fast at the embedded figures test, a task requiring analysis of patterns and rules. (Note that engineering is a chosen example because it involves strong systemising. But other related scientific and technical fields would have been equally good examples to study.)

“We have had these three pieces of the jigsaw since 1997, published in the scientific literature. They do not yet prove the assortative mating theory. They simply point to it being highly likely. Direct tests of the theory are still needed. I will be the first to give up this idea if it is proven wrong, since I'm not in the business of holding on to wrong ideas.
But I won't give up the idea simply because it will be unpopular to certain groups (such as those who want to believe that the cause of autism is purely environmental).”
(GUARDIAN HERE)

But note the straw argument. No one has been trying to argue that the causes of autism are “purely environmental”: what many of us have been arguing against is the notion that it is purely “genetic”.  If Baron-Cohen has no dispute with the causes of autism being partly environmental, what grounds can he have for either dismissing environmental factors as driving force behind the increase of autism, or dismissing the circumstantial case that there has been a massive rise in autism. His point makes no sense. Given two paragraphs to lay out his ideas he emerges not as a leading thinker, but a leading muddler.
And this leads us to a final point about the genetic markers of his recent BBC article. What many of us fear - apart from anything else - is that such markers  would really be markers not for autism, but susceptibility to environmental damage, and this is a point which any proper rehearsal of the arguments ought to address (and Baron-Cohan’s doesn’t).

One point to emerge from all this is how very detached all these ideas from the preoccupations of families struggling autism from day to day. Baron-Cohen could never have seemed further adrift than when he wrote in the Independent:
“Whichever country I travel to, attending conferences on the subject of autism, I hear the same story: autism is on the increase. Thus, in 1978, the rate of autism was four in 10,000 children, but today (according to a Lancet article in 2006) it is 1 per cent. No one quite knows what this increase is due to, though conservatively it is put down to better recognition, better services, and broadening the diagnostic category to include milder cases such as Asperger's syndrome.

“It is neither proven nor disproven that the increase might reflect other factors, such as genetic change or some environmental (eg, hormonal) change. And for scientists to answer the question of what is driving this increase will require imaginative research comparing historical as well as cross-cultural data. Some may throw up their hands at this increase in autism and feel despair and pessimism. They may feel that the future is bleak for all of these newly diagnosed cases of autism. But I remain optimistic that, for a good proportion of them, it has never been a better time to have autism.

“Why? Because there is a remarkably good fit between the autistic mind and the digital age. Computers operate on the basis of extreme precision, and so does the autistic mind. Computers are systems, and the autistic mind is the ultimate systemiser. The inherently ambiguous and unpredictable world of people and emotions is a turn-off for someone with autism, but a rapid series of clicks of the mouse that leads to the same result every time that sequence is performed is reassuringly attractive. Many children with autism develop an intuitive understanding of computers in the same way that other children develop an intuitive understanding of people.

“So, why am I optimistic? For this new generation of children with autism, I anticipate that many of them will find ways to blossom, using their skills with digital technology to find employment, to find friends, and in some cases to innovate.” (INDEPENDENT HERE)

It seems to me that these are the remarks of someone who has made  a very nice career out of it all, but they also could be designed as a “feel-good story” for people who know nothing whatever about it (never mind the bizarre elision between “environmental” and “hormonal”). No one who reads a Baron-Cohen pronouncement about autism from outside the autism world will ever feel that there is anything to worry about – the psychological distress, the physical  pain, the devastated and exhausted families, the immense and astronomically costly institutional problems, the terrible parentless future of millions of helpless adults – all our experiences and concerns have been marginalised and sanitised for public consumption. Meanwhile, if you compare one statement with another the intellectual project looks very confusing

What is alarming, of course, is that geneticists could discover markers which in fact are for susceptibility to environmental damage, rather than for autism itself – and we would end up aborting foetuses to avoid them being vaccine damaged. The NAS would do far better to issue a statement welcoming the IACC grants. We have entered sick territory.

*’Thinking differently about autism’ is the title of a continuing NAS campaign to present a positive image of autism.

Comments

Stagmom

Mike, you're welcome to your opinion. I would disagree that disease is punishment from God - I don't believe God punishes us in that way. Least of all innocent children. That said, prayer can be a powerful tool of healing, I agree. Happy New Year. KIM

Mike Kozelka

With all the time and money spent on trying to find out whats going on with humanity, did anybody think of all the diseases we get as punishment from God. I`ve seen 2 people who were knocking on deaths door and after turning to God 100%, not 50 or 75, but 100%, God cured them 100% over a short time. Turn to God not science.

Simon Baron-Cohen

for information, my views on autism and pre-natal screening are shown here:

http://www.communitycare.co.uk/Articles/2009/01/14/110412/professor-simon-baron-cohen-autism-is-not-cancer.html

Linda

This article makes me wonder, what else will we start screening for that the medical community will suggest should end in abortion? Will left-handedness or red hair be next or at least down the road? My daughter has Down Syndrome, we had amniocentesis, and all our first OB-GYN could say was "I've never had a patient who knew they would have a down syndrome baby (ick!) and kept it." He didn't with us either because his stinking attitude led us to find a doctor who was supportive and understanding of our fears and needs while awaiting the birth of our beautiful daughter who has Down Syndrome, Autism, and ADHD (which docs and researchers are now tying to the increased vaccine schedule)!

John Stone

Jenny W

That's an interesting comment.

One thing does strike me, also, about the studies psychologically profiling parents of autistic people - such as in the Bath study of curvy women or even "embedded numerals" - is that they would only be conducted from a self-selecting group of people who are prepared to volunteer for such scrutiny.

mlinn

Here's the statement that really gets to me in all of this: "Therefore, the boundary between those who have the diagnosis and those who do not is a fuzzy one, leaving room for clinical interpretation." Doesn't the entire DSM-IV produce fuzzy diagnoses? The entire document is a guide for clinical (and in my view, subjective) interpretation. The bottom line is the field of psychology/psychiatry is not science at all, and it's filled with a bunch of pompous blow hards like Baron-Cohen. They only further muddy the waters and prolong the search for true, hard science related to the cause and cure for autism and all neurological disorders.

Jenny W

What gets me is Simon finds all his autistic research subjects at Cambridge... they are students there...

That is autism?? To him it is.

If my son was going to Cambridge, I wouldn't be reading this blog. I wouldn't be an "autism" mom.

John Stone

Sorry, I put the wrong link on bottom of my last post, which should have been:

http://childhealthsafety.wordpress.com/2009/01/13/secret-british-mmr-vaccine-files-forced-open-by-legal-action/

John Stone

Just to note that Baron-Cohen apparently conceded at a closed parliamentary committee session that the vaccine-autism link still needed studying:

"And what is the British Department of Health doing about this? It seems nothing whatsoever, even though at the Parliamentary and Scientific Committee 17th June 2008 MPs and Peers heard Cambridge autism expert Professor Simon Baron-Cohen concede to a questioner that more research into the vaccine/autism connection is needed and that a recent study indicates autism costs the UK £28 Billion pa. The £28 billion figure includes hidden costs, like costs of people taken out of the economy, whether those affected or their carers. [LSE "Economic Consequences of Autism in the UK" - Study by team led by Professor Martin Knapp [Executive Summary] [NB. The main defect in the research is the assumption there are 433,000 are adults (aged 18 and over) who have autistic spectrum disorders. We have the research to show there are approximately 107,000 children but there is not such a number of adults, the 433,000 being a projection based on the numbers of children.]"


http://www.ageofautism.com/2009/01/simon-baroncohen-thinking-differently-about-autism.html


Ray Gallup


The latest on this schmoe, this guy is something!!!.............

A bargain!!!.............

Or is it?

You decide!!!

http://seattletimes.nwsource.com/html/nationworld/2008631969_apeumedautismvideo.html?syndication=rss

DVD teach autistic kids what a smile means

LONDON —
It wasn't until Jude met Jenny that the 3-year-old autistic boy understood what happy people look like.

Jenny, a green tram with a human face, had a furrowed brow when her wheel buckled and she got stuck on a track. But after being rescued by friends, she smiled broadly - and that's when something clicked for little Jude Baines.

"It was revelatory," his mother, Caron Freeborn told AP Television News in Cambridge, England. Before watching the video, Jude didn't understand what emotions were and never noticed the expressions on people's faces, even those of his parents or younger brother.

Jenny's adventures are part of a DVD for autistic children released this week in the United States called The Transporters.

The DVD teaches autistic children how to recognize emotions like happiness, anger and sadness through the exploits of vehicles including a train, a ferry, and a cable car.

It is the brainchild of Simon Baron-Cohen, director of the Autism Research Centre at Cambridge University. He also happens to be a cousin of Sacha Baron-Cohen, the comedian behind the characters Ali G, the aspiring rapper, and Borat, the crass Kazakh reporter.

Baron-Cohen first became interested in autism in the 1980s while teaching autistic children. "Why should social interaction be so difficult for a child who has very good skills in other areas like memory or an attention to detail?" he wondered.

About a decade ago, Baron-Cohen suggested that autism - which is much less likely to afflict girls - might be an extreme version of the typical male brain. Men tend to understand the world via patterns and structure, whereas women are more inclined to understand emotions and sympathize with others.

Autism, Baron-Cohen believes, is a condition where people perceive systems and patterns while remaining almost oblivious to other people and their feelings.

To help autistic children understand emotions, Baron-Cohen and his team use eight track-based vehicles in their DVD. The vehicles have human faces grafted onto them, making focusing on human features unavoidable. The video was financed by the British government.

"To teach autistic children something they find difficult, we needed an autism-friendly format," Baron-Cohen said. Autistic children are particularly drawn to predictable vehicles that move on tracks like trains and trams.

"Autistic children are often puzzled by faces, so this video helps focus on them in a way that makes it very appealing and soothing," said Uta Frith, an emeritus professor of cognitive development at University College London, who was not involved in developing the video.

Frith said the DVD was a way for autistic children to learn social skills the way other children might learn math or a foreign language.

In a small study of 20 autistic children between ages 4 and 7, Baron-Cohen and colleagues found that autistic children who watched the video for at least 15 minutes a day for one month had caught up with normal children in their ability to identify emotions.

But Baron-Cohen cautioned that while autistic children might be able to recognize emotions better after watching the DVD, that would not necessarily change their behavior at home or on the playground.

"This is not some kind of miracle cure," he said. "It just shows that if you have the opportunity to practice these social skills, you can improve."

Other experts said the video was not a replacement for working and playing with real people.

"You can't just park your child in front of this for hours and go to the other room," said Catherine Lord, director of the Autism and Communication Disorders Center at the University of Michigan. "This will hopefully start interactions or play sequences that kids can then play with real people."

When the DVD was released in Britain in 2007, Baron-Cohen and colleagues distributed 40,000 copies free to families with an autistic child or to doctors working with them.

The DVD sells for $57.50 and includes interactive quizzes and a booklet for parents and teachers. It is available online at http://www.thetransporters.com. Half of the profits go to autism charities and research, and the other half goes to Changing Media Development, the company Baron-Cohen launched with colleagues.

Similar videos have been produced, but Lord said those have struggled to capture children's attention. In Baron-Cohen's study, some parents reported that their children watched the DVD hundreds of times within a month.

Freeborn said The Transporters DVD has made a "massive difference" for Jude and their family.

"(Jude) now understands what disgusted is, which is quite important if you have a younger brother," she said.

Kub Marshman

After reading this article, the first thing that popped into my head was the multiple marker screen test completed during my wife’s pregnancy to see if chromosomal abnormalities were present. The results of this test led to the alleged "more conclusive" amniocentesis. I think back to that time often, faced with the risks of damage being done to our son by moving forward with the amnio, the guilt of even considering abortion if the amnio indicated “he won’t be normal.” I am grateful to God our son was born. I’m with karenatlanta: The issue isn’t to introduce another screening test. The issue is what factors are contributing to this epidemic?

Maggie

Autism is an environmentally caused disorder. The fact that the "powers that be" are looking at ways to eliminate those that are vulnerable to vaccines is so sickening to me. What's next?

I read several articles this morning about studies showing adults negative reactions to Avandia and atypical antipsychotics. Nothing in this articles mentioned the genetic make up off those that reacted badly, it was just assumed that the drugs were BAD - not the people. Let's get rid of the bad drugs and vaccines and not the people.

Joan Campbell

Excellent article by John S
So it's taken them 20 years to think up this.
When they have said all along it's ok to stop the child's 18 month checkup, they don't need one!!!

I don’t think they know what they are talking about. Shocking stuff. Anything but looking at the damage of vaccines

They seem to think that all Autism is classic Autism and savant, nothing else

karenatlanta

Whether you are pro-choice or pro-life, the slippery slope of womb screening ought to make the hair on the back of your neck rise.
I had always wished for an honest account of Autism from the media instead of the term "mild social" disorder. But the article I read yesterday in the Daily Mail made my stomach churn. It described a friend's observation of a family with Autism, and concludes the child should never have lived.
That everyone would have been better off.
What hit my heart like and arrow was that my child Josh, had many of those same symptoms described and today they are all but gone. He frequently woke screaming, smeared feces, you know the drill, he didn't pull my hair out but he cut a hunk of it out once.
If I could turn back the pages of time would I have screened and selectively aborted Josh? Skipped this whole nightmare that we cracked teeth and sobbed over every night.
No. Categorically no.
Josh recovered...that poor parent described in the story deserves the right to know there are healing answers for Autism.
The child beneath is worth rescuing, I say that firsthand. We traded the nightmare in for recovery and it is good, really good. Every sentence out of Josh's mouth is a symphony for me. I only wish Autism recovery was worthy of the front page. Apparently eugenics is.

The answer isn't screening, it's prevention.
"It's the environment stupid!" I want to want scream over the Atlantic.
Clean it up, don't inject poisons and you won't need risky screenings.
For the first time in my life, I want to join hands with the Neurodiverse. I want to write them a note and extend an olive branch asking them to please help us abort eugenics before it becomes catastrophic.
Before social security runs out and someone gets the notion shock collars and lock down rooms aren't enough.
Look I'm about as tolerant as you can get when it comes to people's freedoms, but I see an Autism screening for testosterone in the womb as a ruse. A way for Pharmaceuticals to screen out those who can't handle their toxic mother load of vaccines. A way for society to condone eliminating theses children... or even adults someday. (Already in the UK they have sanctioned taking tissue from the mentally incapacitated.) Already we encounter hostility as we grovel for our children's education. Now they want to pressure parents I suppose, to selectively snuff out Autism based on mere predisposition.
All choice issues aside, this is a very scary moment in the history of mankind.
What's next ghettos and box cars????

Ray Gallup


This guy (Dr. Baron-Cohen) should be at the very least doing a study comparing vaccinated populations to unvaccinated populations for autism.

Would he do that?

Of course not when he like others at our NIH (in the USA) can keep inane research going on for centuries avoiding answers for the autism epidemic.

He like others at the NIH want to have WPA (Works Progress Administration---1930's)projects to last for their lifetimes; so they develop these make-work research projects for their own benefit (gainful employment), no matter how stupid or inane the project.

Ray Gallup

Mark H

excellent as ever John.
Also worth knowing that Simon sits on the advisory board NAS founded charity Research Autism.
his input guides how research is funded in the UK. Not good.

Twyla

What planet is this man living on, where so many people with autism will be "using their skills with digital technology to find employment"? If that were the norm we would not be so worried about what will our kids do when they are grown up and we are six feet under.

Dr. Baron-Cohen seems to have about as much sense as his cousin Borat a.k.a. Ali G. In fact that study on "partner preferences for body shapes" sounds like something suggested by Borat or Ali G...

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