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Dear Professor Baron-Cohen

Fiddling By Anne Dachel
OPEN LETTER TO SIMON BARON-COHEN, Professor of developmental psychopathology at Cambridge University and director of its Autism Research Centre, Cambridge University
[email protected]
Dear Professor Baron-Cohen,
I'm writing because of what I'm reading in the British press about autism.  There are a number of highly improbable and likely impossible things that we're supposed to believe about the autism rate.  I'm finding so many excuses and strange explanations for why we have children everywhere with autism that it's hard to know how to begin.  The British press never questions anything.  One claim may directly contradict another, but no matter, it's all reported as THE TRUTH ABOUT AUTISM.  In another age, they'd have told us that the Earth was both flat and round at the same time.
Everything centers around the explosion in autism and how to explain it away.  A once rare disorder is now so common that everyone knows someone with an autistic child and no one in authority seems worried.  
Autism only appears to have increased according to the U.S. Centers for Disease Control and Prevention.  It's really just "better diagnosing."   The CDC must keep in close touch with the experts in the UK like yourself because you were quoted recently saying, 'I don't think it's the right way to think about autism, as an epidemic.'
You obviously don't believe there really are more kids with autism.  " 'A good part' of the rise,' ... can be explained by better diagnosis and an expanded definition of autism." HERE
It's hard to believe you're living is in the same Britain where they recently announced that one in every 60 children has autism, including one in every 38 boys.  

Stories like Autism Estimate Up 50 Percent In Britain HERE and One in Every 64 Children could have Autism, Cambridge Researchers Find HERE give us this information with absolutely no sense of alarm.  I'm starting to think that the rate could be one in 10 in the UK and it wouldn't be a front page story. 
If things aren't bizarre enough in Britain, other autism news really adds to the confusion.
Regardless of the shocking number of disabled children and the self-congratulatory explanation that it's all due to "better diagnosing," we're also being told by the British press that doctors aren't able to diagnosis autism, in fact, they're missing hundreds of thousands of British kids with autism.
Last week, the British Journal of Psychiatry published a report from Cambridge University which said, "The ratio of unknown autism spectrum cases to known cases could be 3:2."  

There are still more children with autism to be found?  One in every 60 isn't bad enough?  Papers in Britain are putting out stories everywhere saying things like,  "A new report has found 80 per cent of doctors believe they need more training on how to spot autism.
"The National Audit Office (NAO) survey found that most NHS organisations and local authorities do not know how many people with autism live in their area, and found GPs and social care staff have low awareness of autism and how to diagnose it."
It makes absolutely NO SENSE, but no one seems to mind in the UK.  Evidently, with 80 percent of doctors unsure about diagnosing autism, there can be both better diagnosing and misdiagnosing at the same time. 

In, Autism: Study Finds 12-fold Rise in Cases, HERE Independent Health Editor Jeremy Laurance, reported, "The number of children with autism has risen 12-fold in the past 30 years and may be 50 per cent higher than previously suspected, the most detailed study of the condition yet has found.

"Up to 250,000 children have autism or a related condition on the autistic spectrum, but have not been diagnosed, researchers say. They are in addition to the 500,000 children who are known to be affected.

"...The authors dismissed suggestions that changes in lifestyle or the environment were behind the rise. They put it down to improved awareness and detection, and the inclusion of milder conditions within the diagnosis

It seems there can't be too much autism in Britain.  Here are some more examples of what they're reporting in British press. Doctors 'Need More Autism Training' says report Craegmoor News HERE. One in Every 64 Children could have Autism, Cambridge researchers find The Telegraph HERE. Many Autism Cases 'Undiagnosed' BBC News HERE.
If one can follow the logic here, we're being told by experts like yourself that Britain has always been awash with autism.  Somehow, having 700,000 kids with autism is nothing new in the UK. 
I have only two questions for you:
1.  Tell us about the adults who have autism like we see in children.  Where are they living and what are they doing?  There are hundreds of thousands of parents in Britain, desperate about the future for their kids, who'd love to know.
2.  How will your country pay for the huge number of individuals with autism who will be aging out into the adult population and who will live long lives dependent on the British taxpayers? 
As was just reported in the Telegraph, you believe that autistic adults are 'currently very poorly served.' HERE And while you mention those with Asperger's Syndrome, I'd like you to show us the 30, 50, and 70 year old adults who  display the same symptoms of classic autism that we see in children, the non-verbal adults in diapers, banging holes in walls and spinning in circles.  I can guarantee it will get media coverage everywhere.
Anne Dachel
Media editor
Age of Autism



Dear Professor Baron-Cohen,

You are extremely stubborn.

You say, "If some note of alarm was needed, perhaps it should be over all those individuals who were missed in the old days, and who are now being better recognized."

Are you not alarmed over the stories told by so many parents of children with autism about their children's severe health problems, impairments, and distress?

How could children such as those described ever have been overlooked? If they were called by another name, what name was it? And where are they now?

A child who cannot speak does not grow up unnoticed.

John Stone

Dear Prof Baron-Cohen,

I am sure Anne Dachel will have plenty to say, but there remains much here which seems anomalous. Indeed, granted the very stretchy nature of autism statistics it is hard to see on what basis you could confidently dismiss new environmental factors as contributing to the trend, or why it should have been necessary to high handedly dismiss the concerns of parents over vaccines for two decades.

Moreover, as I understand it, your own assortative mating theory was formulated as alternative attempt to explain a real rise, and that the Bath University project was an attempt to research the theory and that your research centre helped to recruit fot it:


It is also not very surprising that this sort of thing infuriates people, when they keep on telling you what their concerns are - and when ordinary medical evidence is systematically ignored. The situation has become so bad in the UK that even discussion of vaccine damage and autism has been banned in the UK media, except to ridicule it - the case as you present it in a recent New Scientist article that this controversy has been artificially prolonged by the media does not hold water: the media were long ago warned off, and they are bored with it anyway. It has been kept alive by very fed up families, a witch trial at the General Medical Council, and the disbelief of large sections of the public in the safety of the vaccines (we also have presently "unexplained" pandemic allergies, asthma and diabetes).

I have pointed out before that in 1999, in Haringey we had approximately 109 ASD cases with statements of special educational need of whom only 8 were over 11, but the older population was being monitored by exactly the same services - and you would expect the problems of such children to become more acute and disruptive in adolescence. Moreover, all this happened at a time when the government was actively trying to discourage the identification of complex needs.

Nor has it helped that we have had to fight for services when we have had professionals trying to pretend that everything is normal all the time. I do not understand how we are supposed to have got here: in order to sustain your belief in static incidence, you have now to find not a few thousand neglected cases in the adult population but a few hundred thousand, many of them as you agree severely disabled.

We will all be more than happy to concede that neglected adults should be found and supported, but do you not think that we should be urgently researching - and without intellectual or political restriction - all the possible environmental influences on autism? And should we also not be saying that the professional persecution of Drs Wakefield, Walker-Smith and Murch bodes ill for any real progress in the understanding of these issues? Perhaps you would like to take this opportunity to dissociate yourself from it?


John Stone
(Contributing Editor, Age of Autism)

Teresa Conrick

Simon Baron-Cohen-

I read with interest your comment to Anne Dachel. Did I miss where you answered her question ? :

"Tell us about the adults who have autism like we see in children.(and I'll clarify this by listing: acute and chronic GI inflammation (diarrhea,reflux, colitis, constipation ),chronic bacterial infections especially streptococcus and clostridia, very high levels of aluminum, lead, and mercury via hair/stool/urine upon provocation with a chelator, brain inflammation- mitochondria dysfunction/damage - microglia activation, abnormal viral titers/patterns, hyper-immune/hypo-immune system ie-constant fever vs never runs a fever..) Where are they living and what are they doing?"..

...because this comment below completely misses the point and appears to be some sort of bizarre rationale, again, attached to your "speculative" theories-

"It makes me very sad that many able adults with Asperger Syndrome feel isolated and are unemployed.

Also, your comment-

"These are very high rates, especially compared to 30 years ago....."I think many children in the old days were overlooked and that we are getting much closer to the true rate in the population these days."

I want to point out that your comment starts out with "I think" which has no basis on any data or research. It is opinion and your opinion appears very biased and heading in some direction away from environmental discussions and biomedical evidence. You do not focus on the thousands of children who are in pain, physically, with autism ,yet you state that you are "not alarmed" yet your thoughts on the figures are "speculative". Where are those children of the olden days now?

You further state:

"The "assortative mating" theory remains speculative since it has not yet been tested."

This kind of inappropriate "speculating" without testing, data, and research is not only insulting but borders on reckless behavior. You have a position that gives you a type of authority and for you to post, publish, report, or comment on "speculative" theories that harm autism research, autism families, and especially individuals affected by autism is harmful and therefore puts you in a position of questionable motivation with your research.

Jack Hep

Simon Baron-Cohen states

"I sense that you and some of your readers on this blog wonder why I am not alarmed at what some call an "epidemic" of autism. Personally, I prefer to restrict the term 'epidemic' for contagious diseases, though I recognize others may use it differently."

The WHO has just declared "pandemic" status for the swine flu which to date has proved extremely mild, especially compared with the seasonal flu which never achieves "WHO pandemic" status yet is said to infect millions and to kill tens of thousands each year.

In medicine a pandemic may be defined as "an epidemic over a wide geographic area and affecting a large proportion of the population".

Why are the WHO and Simon Baron-Cohen so selective and erratic in their use of common terminology; and why is the Professor not alarmed at this obvious pandemic of autism?

Simon Baron-Cohen

Dear Ann Dachel,

Thank you for your letter. The new research that you referred to showing that autism spectrum conditions are now much more common than they used to be, and which was published in the British Journal of Psychiatry this month, was conducted by our group at the Autism Research Centre in Cambridge.

Using 3 different methods we found that the rate is now about 1% of primary school age children. This was a large study based on about 20,000 children. As you rightly pointed out, this study also found that for every 3 children who already have a diagnosis, there are two more who would meet "research diagnostic criteria". So, if one includes those who are undiagnosed, the rate goes up to 1 in 64 children.

These are very high rates, especially compared to 30 years ago, when the rates were thought to be 4 in 10,000 (using Rutter's estimates). Interestingly, other estimates from the same period (from Wing) suggested autism was much more common even back then (15-20 per 10,000).

I think many children in the old days were overlooked and that we are getting much closer to the true rate in the population these days. In that sense, the fact that more cases are being diagnosed could be seen as an achievement, that we are getting much better at identifying such children. If some note of alarm was needed, perhaps it should be over all those individuals who were missed in the old days, and who are now being better recognized.

I sense that you and some of your readers on this blog wonder why I am not alarmed at what some call an "epidemic" of autism. Personally, I prefer to restrict the term 'epidemic' for contagious diseases, though I recognize others may use it differently. My speculation (and that's all it is) is that we are nowadays much closer to identifying the "true" rate of autism spectrum conditions in the population. In other words, rather than there being some runaway escalation of autism, we have year by year simply become better at detection.

What I am alarmed about is not the increase but the state of services (or lack of them) available for people with autism and Asperger Syndrome. It upsets me deeply that parents may still feel grossly unsupported at home, or that adults with autism spectrum conditions feel totally ignored by the health and social services. It makes me very sad that many able adults with Asperger Syndrome feel isolated and are unemployed. I continue to highlight these major inadequacies in the system whenever I get the opportunity to do so, since we cannot remain silent whilst people are suffering.

With best wishes, and thank you for taking the time to write.

Simon Baron-Cohen

PS: I haven't replied to all the comments in your blog, for which apologies. Some brief final points though:

(1) the increased rate of autism spectrum we found in this new study was by no means just confined to the high functioning individuals.

(2) We have not "sat on this research for years" since as soon as the complex statistical analysis was complete we published it speedily. Research like this take literally years to conduct and complete.

(3) I completely agree that autism must involve both environmental as well as genetic factors (a point that nowadays hardly contentious).

(4) The "assortative mating" theory remains speculative since it has not yet been tested.

(5) The research into the waist-hip ratio was conducted by researchers at Bath university.

(6) I was pleased that your letter was polite and considerate, attributes that are always welcome.

Teresa Conrick


You make very good points here. Is it grandiosity and ego that keep SB-C going or is there more to his role?

Either way, it is time for this Bettleheimish character to be properly investigated and then subsequently booted.

Kathy Blanco

Read this and you see the set up for autism and other disorders. Then thnk what vaccines do to such children. Your aha moment will come like it did to me...and that is..are we targeting certain children?

Heidi N

I just want to say "thank you" to everyone involved in this Autism Movement. Thanks for all the time spent volunteering to make a difference!


Dontcha know where all the adult autistics are? They all were spontaneously better by their 7th birthday. At least that's what the AAP is going with these days. So I'm just eating my bon bons waiting for my nonverbal, non-potty trained, brain damaged 5 year old to magically recover per the "experts"


Those are great questions. And if Baron-Cohen hasn't been lying all this time, he should have no problem answering them.


Thank you, Anne. I agree with others that Baron-Cohen holds a substantial percentage of responsibility for each new, preventable case of autism diagnosed in the U.K. in the years since he started his hype campaign. He's also a partial "stakeholder" (you know, the old-fashioned kind of stake that people were burned at) in new U.S. cases, African cases-- any place in which his apologias were used in any sense to bolster and keep afloat unsafe practices and policies. The blood is on his hands, the drool, the shit, the agonized deaths, all of it.

Maurine Meleck

Anne,I am glad you are able to get this "off your chest" in a letter. I know this issue weighs on you daily, as it does on so many of us. Hope it's been cathartic for you. Even more, I hope you get a response.


Great article, much needed.

Baron-Cohen wouldn't at all look out of place in The Theatre of the Absurd. Beckett would be proud of him: " The characters of the play are strange caricatures who have difficulty communicating the simplest of concepts... The language used is often ludicrous, and following the cyclical patter, the play seems to end in precisely the same condition it began, with no real change having occurred. ... The focal point of these (absurdities) is often man's fundamental bewilderment and confusion, stemming from the fact that he has no answers to the basic ... questions. Absurd drama subverts logic. It relishes the unexpected and the logically impossible.

How about AoA contest for the best absurdist short play with B-C in the lead role. I'll donate my Autism 1:100 Why? t-shirts to go the winner – they have a vintage value in the UK already.

I love Mark's message, may I it nominate
for post of the week?


Dr Professor Baron Cohen

Autism is not a mental health problem and we do not need any more research from physiatrists or physiologists, but research into the underlying environmental factors including vaccines.
Autism is not a mystery and we do not need to search for any more autistic adults or marvel at the skills of savants, I worry daily about the future care for our children not a about lack of mathematicians in the future.

Please step down from your role at the charity Research Autism to make way for someone willing and able to research these environmental issues and stop this epidemic.
I Know several parents of recovered children who would be more than happy to help out.


"Prof Baron-Cohen said: "We shouldn't assume that what we are currently diagnosing is the full picture, there is no room for complacency. But equally we shouldn't be alarmist and say we should be going out and actively looking for these cases. We should wait until those people want help. It is always better if the patient or their family is looking for help rather than it being thrust upon them."

He said the undiagnosed cases are likely to be at the mild end of the spectrum, are coping well with their families and may not need a diagnosis.

Prof Baron-Cohen said that for some families the autism label may 'raise anxieties' and be intrusive, rather than helpful. "

Someone just shoot me.

John Stone

Dear Anne,

It is truly shocking that Prof Baron-Cohen and his colleagues have sat on these figures for years while many of us have battled for recognition and services:


But the trouble is that even now he is fudging the issue. What is the point of going to our local adult services with the message that it has always been like this, when until recently they have barely seen a case? And while he goes on a search for 6-700,000 adults that he has been missing for the last quarter century, some of us have to cope with chaos of confused messages that we are getting from him and official sources.


I believe he is profoundly responsible for this mess, with others like Prof Sir Michael Rutter. We not only have this present matter, but also the fiasco over screening for autism earlier this year, the fudginging of the genetic/environmental issue, and the offensive red-herring about assortative mating and female hip measurements - he is responsible for all this. Nor, is it the case that there will only be able cases missing in the adult population - there is ample evidence tha lower continuum cases have been rising steeply too, so he has to locate those as well.

Frankly he owes us all an apology for this lamentable state of affairs, and his resignation.


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