Dr. Baron Cohen Responds
Managing Editor's Note: Thank you to Dr. Baron Cohen for responding to Anne Dachel's open letter to him (HERE). We need to be able to discuss the future of our kids with the experts and professionals who wield tremendous influence. We might not always like it. We might strongly disagree. But we'd darn well better keep talking - for the sake of our kids who are hurtling toward adulthood. Thank you, Dr. Baron Cohen. And thank you, Anne. Here's the response from Dr. 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.
Okay, I typed in Micheal Savage and the word autism. He is a shock jock radio guy that said 99% of the time the Dad was not around to tell the brat (autistic child) to cut it out. People with autistic children protested.
I had forgotten, there are people out there that don't know what autism is. Hard to believe, but there is really such a world! I remember it sort of, I remember the last moment of that world when my neighbor and best friend asked me if I had ever heard of autism as she watched my three year old son standing in the middle of the yard while her grandson ran circles around him. I said,"Why yeah, I've seen "Rainman" with Dustin Hoffman".
Posted by: Benedetta Stilwell | June 14, 2009 at 10:48 PM
i am sorry, but who is Michael Savage and what has he said on this matter? I looked that name up and there is a whole lot of them. One is a radio host?
Posted by: Benedetta Stilwell | June 14, 2009 at 08:49 AM
To tell the truth, I think the problem is a bit of both. I think that the rate of autism has gone up as well as the fact that there are better diagnosis. From a very early age, I knew that I was autistic. I also knew that most people had no idea about autism. Even though I was diagnosed as autistic at three years of age by one person, most others said I was "emotionally disturbed," "severely retarded," or had multiple personality disorders. It has been only recently that I have come out as being autistic. I have done so so that I could help improve the treatment autistic people receive.
I also believe that autism has more than one cause. I was autistic before receiving any vaccination. However, I cannot discount the fact that many parents state that symptoms of autism show up right after vaccination. Saying this may put me in the cross hairs of the neurodiversity movement (which I am also a part of), but I cannot ignore the timing of vaccination and the appearance of autistic behaviors. I know of a few doctors who suggest not forgoing vaccinations but rather spreading them out and postponing some.
I'm willing to listen to different opinions and help out as much as I can in the autism community. What I don't abide is all of the infighting within the autism community. I see no point in getting angry over differing opinions. I am a member of the Autism Speaks, Neurodiversity, and Wrong Planet forums.
I also listen to Michael Savage even though I disagree with him on his opinion of autism. I just want to say that autistic kids grow up to be autistic adults. Society needs to start planing ahead.
Posted by: William Keeley | June 14, 2009 at 07:35 AM
I read all that for nothing! He didn't answer the "where are the autistic adults" question!!!
Posted by: Jen H. | June 12, 2009 at 10:34 PM
I am very happy to hear Baron-Cohen urging more focus on the plight of adults with autism to access employment and adult autism services. He should come to the U.S. and tell this to our state and federal governments, because we are not being helped at all. There are no available autism-trained doctors, no adult support services and financial support, no health care coverage, and even with a law degree no employers will hire ue. We are being left to rot on the trash heap of U.S. society. And, as one commenter mentions, yes, being a prodigious savant with autism makes it even worse -- the paradox of all paradoxes: we get no 24-hr care services because people misjudge our more disabling aspects when they see our prodigious savant abilities, e.g.: http://www.equiisautisticsavantartist.webs.com/. Without asking if someone like me can earn a living selling artwork or getting our professional licenses to work as lawyers, people just marvel at the savant artwork and conjure up my ability to support myself off what ? ... the severely disabling aspects of my autism. It makes our lives miserable to be nothing but "vast wastes." And worse, when we don't have proper support services, sufficient food, shelter, health care.
Posted by: EquiisAutisticSavant | June 12, 2009 at 05:13 PM
Eh, honestly this lie (we are better at diagnosing) can't last must longer. People are not stupid. I'm 33, most of my friends are 30-40 years old- they look at the kids today compared to when we were growing up and THEY KNOW. You can't keep yelling these lies that are totally contrary to what people see with THEIR OWN EYES and expect that's gonna get people to believe you. Everyone knows that there is simply A LOT more children with autism, all over the spectrum, than there was even 15 years ago. People may disagree about the cause but a couple things are clear: There is A LOT more autism now and it can't be just genetic. Anyone who tries to argue those points, to me, has lost all credibility.
Growing up, I never met any child or heard of any child like my son. You could talk to any special educator and they would tell you the same- the whole model of special education has been changed. In the past there were kids with cognitive and learning disabilities, chronically delayed. My brother was such a student, as were his classmates- mildly mentally retarded, dyslexic, etc.... These kids were not autistic. They did not have obsessions or screaming freak outs over a broken cookie (12 year old). They did not think they could fly and jump off a roof or spin in circles for HOURS. They didn't click and flap. They didn't know precise directions in the 30 mile radius of their home. They did not have severe immune system dysfunction. I can tell an autistic child just by that odd gait. And they are everywhere. You think the services are paltry NOW? Pshtt. Just wait.
Posted by: Kristen | June 12, 2009 at 04:32 PM
Lisa from www.autism.about.com, you are missing the point, which is that by whatever name you call it there were not the same number of affected kids 30 years ago that there are today – even ignoring the issue of GI symptoms, and just looking at the classic signs of autism such as impaired language and social skills and perseverative behaviors (and yes that is not an exact quote from the DSM but that is the gist of it).
You are quibbling with words and semantics instead of addressing this issue, which has been so well stated in a number of comments below.
Yes, not all people with autism have GI issues but many do. These GI issues, often severe, are a very significant problem to be addressed.
Interestingly, some of the people with autism who do not have obvious GI symptoms do benefit from treatments such as dietary interventions and digestive enzymes. For example Karen DeFelice, who has written books about digestive enzymes and autism, suffered from migraine headaches, and one of her sons had frequent stomach aches, and the other son had autism but no obvious GI symptoms. They all benefited from the GFCF diet and digestive enzymes – apparently all of their immune systems were reacting to gluten and casein but the resulting symptoms were not the same. So you can’t necessarily neatly divide those with obvious GI symptoms from those without.
This is consistent with the experiences of many people I have known and read about, including the advice of authors/mothers Karen Seroussi and Lisa Lewis who have spent years working and learning about dietary intervention and spoken with/heard from thousands of parents. They say that the only way to know whether dietary intervention will work is to try it; even those without obvious GI issues often benefit, i.e. show a decrease in challenging autistic characteristics/behaviors and better communication etc. – indicating that digestive issues can exist without obvious symptoms.
Impaired digestion and inflammation of the digestive tract are significant factors in many cases of autism, not just a small subset.
Posted by: Twyla | June 12, 2009 at 11:40 AM
Brain damage is brain damage no matter how you slice it. Though I "thought" my child didn't have the GI isues, I was wrong when I tested to see the high bacterial counts. You can have perfectly normal looking, smelling poops, and stil have out of control klebsiella and citrobacter? And for seizures? I suspect ALL children with autism have them, the silent super deadly ones too as well as the less significant or telling. I supect all our children have mitochonrial collapse of some form or another that is not even testable via oxidative stress. Many of our kids lack the proteins enzymes necessary to have normal functions. I think a lot of our kids cannot test properly because they cannot communicate, thusly we don't know their REAL IQ. And, I suspect that many of the other issues involved in utism are just multisymptomatic expressions of damage to pathways, processes, etc, damaged by environmental and toxic vaccines. I also suspect that most kids with autism were immediately cord clamped at birth, pitocened and C sectioned, and that mothers/fathers have a severe to faint amount of immune problems, infections that were given to their children as well as problems with metabolic function.
Posted by: Kathy Blanco | June 12, 2009 at 11:14 AM
By the way, Lisa, has it ever occurred to you that this diagnosis did not exist before simply because there was no need for it? Because the illness did not exist?
No? I thought so ...
P.S. no, it would be extremely silly to group autisms into GI or No-GI dysfunction. Because we could then end up grouping kids into Visual-sensitivity and No-visual-sensitivity groups. Abnormal-pain-threshold versus Normal-pain-treshold... Mito-dysfunction versus No-mito-dysfunction groups. Coordination-and -balance problems versus No-coordination-problems groups. For ever and ever. It would be idiotic and time wasting to have 'official' groups of anything in autism. That is not to say that individual problems and dysfunctions should not be recognised and treated, in each individual case. Tailor made diagnosis and treatments.
Posted by: Natasa | June 12, 2009 at 09:55 AM
Everything that comes out of this man's mouth a some combination of wishful thinking toward an agenda, naivete, and good old-fashioned poppycock.
Thank you AoA for putting this fraud in perspective simply by publishing his own ridiculous words.
Posted by: Steve | June 12, 2009 at 09:43 AM
Hi Lisa,
An interesting point. I don't know how historically unaware people were of higher functioning autism. I remember a talk at my old school c1971 by the head of a local mental institution (a very nice man). He mentioned that he had just been reading a biography of Beethoven and was convinced that he was autistic - this is now nearly 40 years ago and the concept of higher functioning autism was surely already with us, and it is quite interesting that this good gentleman certainly used the word "autistic" not Asperger Syndrome - he was probably not getting too technical but recognised there was a continuum.
I doubt to day that Prof Baron-Cohen would have too much difficulty slapping such a diagnosis on the great composer (whose social behavious was often gauche and naieve beyond belief), but it should also be mentioned that he suffered as we now know from extreme lead toxicity.
http://www.sjsu.edu/depts/beethoven/hair/hair.html
JohnS
Posted by: John Stone | June 12, 2009 at 09:32 AM
"Are you working on some new excuses for when the rate is 1 in 2 children?? Perhaps then you would be alarmed".
Have you seen the latest recommendations from the APA's Working Group on 'Autism'.
http://www.psych.org/MainMenu/Research/DSMIV/DSMV/DSMRevisionActivities/DSM-V-Work-Group-Reports/Neurodevelopmental-Disorders-Work-Group-Report.aspx
The working group is a who's who of behavioral geneticists and child psychiatrics who are moving towards a definition of autism as a trait condition rather than what it is, a profoundly handicapping condition.
To include 'social awkwardess' as a part of an 'Autism Spectrum Disorder' trivializes autism. At what point does ASD become a meaningless 'condition'. .
25% of the general population would fall into an intoverted personality type (social awkwardness):
http://www.theatlantic.com/doc/200303/rauch
The prevelance rate is headed to at least a 1/4 prevelance rate, if Baron-Cohen's concept of autism being what he describes as an 'Autism Spectrum Condition', is encoded in DSM-V.
Posted by: RAJ | June 12, 2009 at 09:14 AM
Lisa: Re the issue of "why so many more being diagnosed now,"
THAT is not the real issue. The real issue is how many are affected.
And to what degree.
Never mind the diagnosis.
To put simply we now have millions of young children throughout the world who CANNOT FUNCTION and need support on many levels. Millions with different degrees of impairments, different symptoms (that fall on the spectrum).
They were not there in the past.
Posted by: Natasa | June 12, 2009 at 09:11 AM
Since diagnosis of autism spectrum disorders involves observation of behaviors (and not medical tests), I don't believe that Dr. B-C is engaged in looking at GI issues and such.
In fact, it wouldn't surprise me very much if the disorder characterized by autistic behaviors and GI disorders winds up with its own name on the autism spectrum, since it seems to be a distinct set of symptoms. There are certainly many people on the autism spectrum who do NOT have major GI issues (including my son).
Re the issue of "why so many more being diagnosed now," I'm not sure why the point hasn't been made here that there was no such thing as an "autism spectrum" before the early 1990's. How can you diagnose a disorder with a label that doesn't exist yet? There was also no bipolar disorder, no ADHD, etc. - not because no one had the symptoms, but because no one had come up with the idea that that particular collection of symptoms should be grouped together and provided with a particular name!
Lisa (www.autism.about.com)
Posted by: Lisa | June 12, 2009 at 07:18 AM
dear simon
Firstly can I congratulate you on reading age of autism
I am sad that you could not find the time to address my points on the UK Research Autism Charity
to put it bluntly I am sick to death with seeing you on the BBC and in the printed media how are we expected to be taken seriously in the if our only expert sends out such a confused message.??
with one breath you are saying that our children are so well suited for the computer age and the next breath they are struggling for educational services.
you research into genetic disposition then worry about it lading to eugenics and a lack of mathematicians
you announce 1 66 children have autism but still have not been able to identify anywhere near that number of adults.
You perpetuate the myth that autism is at best a personality disorder and at worst a difference in "brain wiring" to be wondered at.
and the worst thing is that you are still not happy with the numbers being reported!!
Don't worry simon with you incharge we can look forward to 1 in 25 in the next 10 years
you admit that the environmental factors are widely excepted ,so why is there no relevant research in the uk and why are 90% of the research autism experts from the mental health field? as i said before autism is not a mental illness
Step down from Research autism if you can ask difficult questions you should not be involved in research
Posted by: mark h | June 12, 2009 at 05:44 AM
Dear Prof Baron-Cohen,
Is this really good enough? Your first publication in the field of autism was in 1985 - you have had these figures, probably for 5 years, and you are in your own words "speculating". On this projection (supposing your speculation was correct) we have nearly 1 million ASD people in the UK.
How can we have got into this mess. I actually posed this question in relation to Sir Michael Rutter and an interview he gave to Private Eye regarding the Japan study, more than four years ago.
http://www.bmj.com/cgi/eletters/330/7491/558-a#102120
These two issues are intimately linked, and this is a muddle of a high order: you speculate on the existence of a vast hidden population of disabled people, for which you no evidence and have now admitted it.
Sincerely,
John Stone
Posted by: John Stone | June 12, 2009 at 04:49 AM
Dr. Baron Cohen,
Honestly, what do you see when you close your eyes at night? Do you comfort yourself with your foolish belief that autism is just now being recognized? Have you repeated this summary so many times that now you are at ease with it and can casually make this remark without twinging a little?
One day you are going to wake and the rest of the world is going to reject this line of BS and you and those like you will hopefully live the rest of your lives in disgrace.
And when your old and very fragile and ready to meet your maker, I pray you will be beg for forgiveness. And there in front of all who have suffered because of your arrogance you will be left to weep for your sins.
Posted by: Nora | June 12, 2009 at 03:50 AM
to Tired:
It is logical to assume that an autistic child who spins, walks on his toes and flaps his/her arms would of course not be 'missed' and would be diagnosed with autism. Autism, however is a SPECTRUM with symptoms that vary from case to case (or person to person). Asperger's, for example may include the following (not a full list):
Lack of use of pronouns (I, he, she, we)
Large vocabulary “little professor”
Will parrot back speech heard but doesn’t fit the situation
Very literal in use of language
Lack of eye contact
Often must look away before talking
Clumsy
As a toddler, didn’t explore/learn by touching
Lack of imaginative play
Lack of interest in others
Poor social skills
Doesn’t understand body language
Seem to lack common sense
Excellent rote memory skills
Focuses on parts, often missing the whole
Very inflexible
Spelling is pretty good Due to his xcellent rote memory skills
www.aspergersyndrome.org
Posted by: A Sodee | June 12, 2009 at 02:36 AM
This is scary:
"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)."
1 in 64 kids is 156.25 kids per 10,000 so 30 years later we are experiencing a rate about 10 times the "much more common" estimate by Lorna Wing who is another long-time researcher. If this isn't an epidemic, can we call it a catastrophe?
Posted by: Katie W. | June 11, 2009 at 10:50 PM
I'm so glad this site exists...otherwise I'd feel that maybe the truth wasn't out there. But it is. I'm glad too that we can read some of the Big Lies here...even the politely, considerately worded ones.
Posted by: Amanda Blinn | June 11, 2009 at 10:48 PM
Dr. Baron Cohen states:
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.
So if his current estimates are 1-64 and we're only getting close to rates that have prevailed throughout the 20th century that means maybe 1-50 or even 1 in 30 American's had this condition and no one knew about it. The idea strains credulity. Especially when one considers autistic symptoms are clearly distinguishable from those of mental retardation - the diagnosis epidemic deniers argue many autistic individuals at the time were given. And mental retardation is a condition that has, due to improved prenatal care, dropped considerably
Posted by: Robert Schecter | June 11, 2009 at 10:30 PM
And yet Anne's point of the inconsistency of the media's portrayal of theis "non-epidemic" was not addressed. The world is flat and round at the same time? I think Baron-Cohen is concentrating on the minutia and not seeing the whole picture. I agree that every fourth mom I talk to has a child who will need serious services and not just accomadations. At every little league game I attend for my childen - two siblings are "delayed." Was it really always like this?
Posted by: Christna Liberatore | June 11, 2009 at 10:03 PM
Lin, I was born in 1960 and I do remember some kids in the "mentally handicapped class" that didn't have cerebral palsey or down's sydrome and were non-verbal and probably needed support around toiletting. One such boy was a neighbor and I really wish they still lived nearby and I could ask the mom what her theories are as to Randy's problems. Who knows? Maybe even then some kids had a bad reaction to polio vaccine or some other. I would not be surprised that there were some kids with autism back then that were given the label "mentally retarded" but would be diagnosed differently (possibly on ASD spectrum now). I've also worked at an institution for severely/profoundly handicapped and it would be so interesting to go back over the kids' files and see what was going on. Usually there is a known etiology- hydrocephalus, down syndrome, cerebral palsey, seious head injury. And yet, maybe there were a few who had severe autism but the cause was unknown.
Michelle- RIGHT ON. They should be made to list the ingredients on the waivers or whatever- just like they do with cigarettes and any othere stuff that goes in your system!!!
Posted by: jen | June 11, 2009 at 07:20 PM
Today I took my son to have a procedure at a local surgery center. At 11 am there were a few adults in the pre-op area and two boys. One of them being my son age 13 non verbal autism, the other boy I later found out is age 11 and also autistic, but verbal (I noticed his odd baby-like speech earlier). I ran into his Mom in the parking lot and saw her Autism Society of America License plates. I introduced myself and mentioned her plates and said my son has autism too. She said I have another one with autism at home. A nine year old boy.
2 boys with autism at the local surgery center at the exact same time- the only kids in the place.
Autism is just so damn common today.
How come I never heard the word autism until 1988 when Rainman came out? How come everyone says that? Everyone I know my age and older introduction to autism came by way of that movie. Most importantly none of us personally knew such a person. Who acted like that and talked that way. And besides most kids with autism are nothing like that character. But, still that's all we knew, all of us.
When I really think about this better diagnosis and better detection malarkey and the people who promote and perpetrate this lie- this intentional misconception. I think Oh my God...who are they kidding??
What is our world going to look like when these young people grow up to be dependent adults? Where will they live, who will care for them, how will we afford to care for them? What in the hell is going to happen?
I am terrified of the future, absolutely terrified.
Posted by: What kind of a world? | June 11, 2009 at 05:19 PM
Welcome, Michelle Petersen!
Please come back soon.
You are so much smarter and more educated than "Dr." Baron-Cohen. And we really need you here.
Posted by: Terri Lewis | June 11, 2009 at 04:58 PM
Simon Baron-Cohen is no different than a 60s era sheriff in a Mississippi town who logs local lynchings as "suicides". He's every bit as much a killer as the mob with the rope. Does it matter that lynchings were targeted and deliberate and vaccine and toxic injuries are collateral? Dead is dead, maimed is maimed. The cover-up is precisely the same.
Posted by: Gatogorra | June 11, 2009 at 03:58 PM
I just came across this web-site I don't know who this doctor is, but I would like to tell my story anyway. 10 years ago I had a baby. My baby was fine until he was injected with to much poison. At the time I chose to vaccinate I had no idea of the ingredients(aborted fetal tissue, mercury farmaldahyde, aluminum chicken embryos, monkey cells, etc. ect.) I was told that the benefits outweigh the risks. ( I barely read the info statement) I was told it was the law. (which it is'nt) I was told my child would not go to school if I chose not to. (which is'nt true) So I was lied to from the beginning. Had I known the ingredients, major risks, that is was'nt the law I know I would of made a different choice, but it took my son to be poisioned to figure all of this out. I have done lots of research in the last 10 years. I found out the truth. My 2 younger sisters died of SIDS (within days of their vaccinations), they don't know why. My child has autism (vaccinated) my 2 other sons don't(unvaccinated) They don't know why. I have a friend who recieved polio from the vaccine, they know why. (the vaccine is no longer recommended) I have residents who recieve the flu vaccine then die from the flu. (they were just old) I work as a sub aide at a school, the parents of kids that I take care of know what caused their child to have autism(they don't) I have heard families grieving over loved ones that died from the guardasil vaccine(but they have underlying conditions, is what they say)but the parents say not. They continue to promote it. These and many more are just "coincidences" in their eyes. I'm not trusting them anymore! I have been begging the CDC for at least 3 years to add the ingredients to the info statement but they won't. I think it is only fair that people know what is in these vaccines. I think everybody should recieve a informed choice on wether you want to supposedly take the risk of dying from some horrible disease, or taking the risk of death or permantely damaging your child! I am not selfish for the choice I have made because, I do not care wether anybody vaccinates or not, it seems less scary to me if you don't. So you make your choice and I'll make mine. I have tried and tried to trust and believe the things I am being told, but when I called my doctor that I have had since I was born and asked if I could make an appointment to discuss vaccines, I was told know because he did'nt feel educated enough to discuss this, My trust stopped instatly! This is'nt just my doctor I have asked so many. All I get is the subject changed, or sent home with a letter stating that I am selfish and taking advantage of others ( which is not possible) I can explain. I could keep going forever but at the moment I am busy, so I will comment more later.
Posted by: Michelle Petersen | June 11, 2009 at 03:49 PM
While on the surface, Professor Baron-Cohen's letter appears reasonable and thoughtful, the main arguments he makes are not. He continues to make the outrageous claim that "better recognition" could account for a substantial percentage of the rise in cases of autism. Even aside from the M.I.N.D. prevalence study showing that increased recognition can only account for a negligible percent of the rise, the "increased recognition" alibi is ahistorical and relies entirely on the consumers of this concept having no will or means to investigate the idea. A simple search of statistics for "mental disability" in U.S. Social Security records and, before Social Security was instituted, a search of U.S. Census statistics shows that THERE WERE NOT ENOUGH MENTALLY DISABLED INDIVIDUALS IN THE U.S. 100 years ago in which to hide a current, comparable number of severe cases of autism among U.S. children.
Even if one could somehow prove that no "mental disability" other than autism existed 100 to 150 years ago-- no schizophrenia (rates of which have also risen), no severe depression (which has also risen), no alcoholic or syphillitic dementia, no traumatic brain injuries, no severe posttraumatic stress, no congenital brain disorders, no blind-deaf-mutes commonly mistaken for mental retardation or anything else that may have once been, for better or worse, deemed a "mental disorder"-- there still weren't enough statistical "slots" for today's low functioning autistic child population to fill.
Virtually all rationales which might be used to explain away the shocking rise in all so-called mental disabilities would collapse under scrutiny. Victorians were not more tolerant of eccentricity than we are today. The economic gap was steeper and there were fewer families which could have afforded to provide private, home-care for severely disabled child and adult relatives and thus hide their existance from census-taking. And since, as we all know, physicians can barely recognize autism in children by age two much less a short time after birth, there would not have been secret euthanasias performed widely by obstetricians.
The historic evidence meshes very well with the testimony of those over sixty who grew up knowing of every birth and death in their home towns: few had ever met or even heard of individuals with autism until the past few years. For the most part, they don't exist.
Professor Baron-Cohen commends Ann Dachel for being "polite" in her redress of his theories and stance. It appears he's attempting to set his preferred tone for future discussions of his theories. I'm game: the only problem is that it's difficult to find a polite way to say that someone's scientific work is both acting as a blockade to/soaking up resources for better and more crisis-oriented research which would get to the root cause of the *epidemic* (call it Holocaust if we don't like "epidemic"). Said another "polite" way, Professor Baron-Cohen's work is being used (and, it seems, created) as a political tool which enables the crisis will continue.
Posted by: Miss Manners | June 11, 2009 at 03:39 PM
With perhaps the exception of some Aspergers cases it is IMPOSSIBLE for autism to have gone undiagnosed for years. I don't recall any non-verbal non-toilet trained students in my classes as a child. Does anyone else?
Posted by: Lin | June 11, 2009 at 03:32 PM
Although always unspoken, the other assumption behind the "better diagnosing" theory has to be that parents just didn't notice/didn't care. How absurd. Parents of all times would move heaven and earth for their kids. They wouldn't just ignore the fact that their child couldn't function. It just plain wasn't happening.
Ask a good teacher with 20-30 years experience. The notion that these kids have always been here and we're just now counting them just doesn't match the experience of those in the trenches, like teachers. Seriously, go ask them how many kids they had with their hands over their ears, spinning in a circle 20-30 years ago, versus now.
Posted by: Jack R. | June 11, 2009 at 03:17 PM
Bacillus thuringiensis pesticide has not had long-term research done on humans. It's put on and into GMO corn, potatoes, and cotton.
http://www.bt.ucsd.edu/how_bt_work.html
Instect eat the pesticide, the toxin binds to the receptors in the gut, causing the gut wall to break down, allowing spored and normal gut bacteria to enter the body.
Colon cancer is on the rise. Other digestive conditions are on the rise. It's logical that this is the start of it all-then add other assaults, like vaccinations and Happy Meals. Malnutrition has a physical manifestation, so does having a build up of bacteria, viruses, fungi and metals in the body.
Doctor Baron-Cohen, please consider this seriously with your research. Work with us. Autism could have a genetic link, but more than likely, it's the familys' dietary choices that's the link. Mom's don't cook organically for one child and junk for another.
Posted by: Deb in IL | June 11, 2009 at 02:35 PM
One in 64 with autism *isn't* alarming?
Only if you just don't care.
It is Really. That. Simple.
So simple, that it bears repeating: One in 64 children with autism is *not* alarming if you Just Don't Care.
Simon Baron-Cohen just doesn't care.
There are other people who do, and we'll work with them.
Posted by: Terri Lewis | June 11, 2009 at 02:35 PM
Oh wow - great, the same old partyline being towed once again. Give me a break. Are you working on some new excuses for when the rate is 1 in 2 children?? Perhaps then you would be alarmed.
Coming soon: "Autism - The New Neurotypical"
Posted by: Michelle | June 11, 2009 at 02:34 PM
I am re-posting my comments to Simon Baron-Cohen from last night and adding to it today.
Many here today are reiterating my sentiments. Another comment that you made is
troublesome.
You said-
"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."
that last part-
"since we cannot remain silent whilst people are suffering."....
is what all of these posts are about. How utterly ironic in a very narcissistic way, for you to say that "we", meaning "you" cannot remain silent as children with autism suffer, yet that is exactly what you have been doing.
By denying the true rise in childhood cases,you have allowed suffering to continue. By denying the severe and physical nature of these childhood autism cases, you have turned your back on helpless children and devastated families. By denying for years that the the environment/vaccines may be part of that rise is a travesty to all those who have been injured and subsequently diagnosed while you have, in your role as "expert", allowed the numbers to increase, a nice way of saying, allowed children to be harmed.
______________________________________________
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.
Posted by: Teresa Conrick | June 10, 2009 at 07:53 PM
Posted by: Teresa Conrick | June 11, 2009 at 02:26 PM
"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."
I would really like to know how on earth you could possibly know that autism ISN'T a contagious disease. If there's a mysterious environmental cause, for the love of all that's holy, why aren't you trying to find out what it is instead of concentrating on socio-genetic mating rituals and epidemiology? Has it ever occurred to you to physically study autistic children's body chemistry? To look at what is and isn't in their blood, stool and urine? To see if they've had abnormal immune responses to some pathogen or environmental trigger? To find out if, for instance, a great majority of them are found to have HHV6, avian retroviruses from contaminated vaccine culture medium, or Lyme spirochetes, or perhaps vaccine strain measles virus lurking in there? Or PCBs? Or lead, mercury and aluminum? Or cyanotoxins? Or something novel that's never been discovered yet? Don't you suppose that if there's an environmental factor that is causing the human race to degrade, it might be important to figure out what that factor might be?
Sir, your utter lack of alarm, whether genuine or theatrical, is quite alarming and even appalling, given your position.
Posted by: Garbo | June 11, 2009 at 01:50 PM
Dr. Baron - Cohen - I don't believe in this "genetic predisposition" crap being floated out there. Autism is an vaccine induced illness period. Autism is alarming and never gets missed. For God's sake even my dog gives my son funny looks for the way he acts. Geez, kids with autism do not get missed.
Posted by: Tired of Autism | June 11, 2009 at 01:04 PM
How can better diagnosis spontaneously spring-up from all 50 states and across the globe simultaneously? I don't buy it.
Posted by: FedUp | June 11, 2009 at 12:00 PM
While I agree that there are many children who are not diagnosed that are on the spectrum, I disagree that this current rate of autism is reflective of what the true rate was years ago. I never knew of any child who flapped, spun in circles, lost speech or had severe sensory issues growing up. It wasn't that these kids weren't diagnosed--they didn't exist. While there had to be some cases--at 1 in 10,000 kids, I never saw any. I never even heard of autism until Rain Man. And I am sure that is the case for most of us. I think it is wonderful that Professor Baron-Cohen wants to help with services but I find it really hard to believe that he truly believes in these statements. Were there all these children with autism in his school growing up? If the autism rate has really never increased, then why are doctors and teachers unequipped to diagnose, educate or treat our children? Wouldn't this just be old hat by now? The truth is, they have never had to deal with autism until recently. Telling us it has always been this prevalent doesn't change the reality of what is happening.
Posted by: kristin bushey | June 11, 2009 at 11:01 AM
"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."
This is a stark lie and you know it. Either that, or you don't know what you are talking about.
Posted by: nuff of the BS | June 11, 2009 at 10:57 AM
These people are so exhausting...I just can't stand it, Baron-Cohen and Karp with his 3 article series on the "coincidnce" between the rise in autism and the rise in vaccination over at HuffPo.
Does Baron-Cohen not realize that such an incomplete response to Anne's letter does nothing more than shore up her points. He simply and quite effectively redrafted the illogical connections she laid out. He argues that 1 in 64 children with autism is representative of the entire population and not really representative of a rise. He agrees that it is probably caused by environmental trigger yet his only alarm is over the lack of services.
This is completely illogical. Even "high function" individuals with autism do not just blend in with the rest of us, undetectable.
If we had 1 in 64 adults in need of services, or even 1 in 150 for that matter, we would know it. Their families would be in a state of outcry, yet in reality, no one can find these people.
And if he believes there is an environment trigger shouldn't that cause him some alarm. I mean really, shouldn't we feel a sense of urgency in preventing more cases if the cause is environmental and the establishment is unable to provide services to those who currently have the condition.
If Baron-Cohen, Karp, Offit and friends spent a moment of their lives amongst the preschool community they would realize what so many Mom's are saying (and I mean all Mom's not just autism Moms), "Gosh I don't remember kids being like this when we were young. I didn't know kids with autism, asthma, food allergies or diabetes and now I see them everywhere I go...What's up?"
This argument, of better diagnosis, has reached a state of complete obsurdity. Obviously, the deniers strategy is‘wear the them down with stupidity’ because it sure is exhausting responding to this same old Bull Shit over and over again.
Posted by: Pamela | June 11, 2009 at 10:36 AM
He's like a smoke alarm with old batteries. His sensors are picking up on the smoke, but he is too weak to sound the alarm.
Posted by: Interesting | June 11, 2009 at 10:19 AM
The guy is a,joke unlike his brother who admits it...
Posted by: Angus Files | June 11, 2009 at 10:02 AM
Dear Prof Baron-Cohen
I attended a very large primary school between the ages of 7-14. There were about 440-450 children attending, half of whom were my generation, meaning that the faces and names would have been the same throughout those 8 years. We spent time together during meal and breaktimes, sport activities etc. In addition, this was a different area, when children socialised a lot outside school, large groups walked to school together. An area when very few people moved to different towns or even changed jobs. Neighbours were for life and teachers were for life.
According to your calculations there would have been at least 7 children with autism in my school. Even if we suppose that say 2 of those 7 were severe enough to be recognised/diagnosed and sent off to another school or an institution (highly unlikely), this would leave us with at least 5 unrecognised and undiagnosed children!! Where on earth were they, I wonder, those masters of disguise.
Do you really want me to believe that there were at least 5 children at my school who could not talk “properly” (yes, there was one neurotypical child with a stammer, and everyone knew him), children who sat alone in the corner (there was one extremely shy, neurotypical girl, and everyone knew her). Some of those 5 would have walked on toes, turned their eyes around in funny ways, who sometimes rocked or mumbled repetitive things to themselves. But we just never noticed them?
Or do you want me to believe that they were there, but just by coincidence they all happened to be very mildly affected, all 5 of them, and instead of banging their heads against the wall they “only” spent their time obsessing about things that were of no interest to anyone else, sometimes screamed if we touch them, mostly prefered to walk to school alone and never joined in any group games and sports? We just never noticed them? Never once in those 8 years would any of my schoolmates point to another child and say “that boy acts a bit funny”.
Do you really expect me to believe that there were some children in that school who were controlling and rigid in nature and did not respond to normal school discipline, rules and regulations (which were very strict, and highly structured), avoided eye contact and had poor social skills and understanding of others? But none of us, including the teachers, just never noticed them????
Most importantly, do you really think that those 5 children could have gone through the school system without any major academic fallouts? Don’t you think any child on the autistic spectrum would struggle with the continuous examination system? Half of those exams consisted in having to stand up and answer teachers questions in front of the class. Once a week on average. Children who did not get enough passing grades would not go to the next year. There was no special provision in the school, and no one-to-one support.
Frankly, what planet do you live on?
Posted by: Natasa | June 11, 2009 at 09:41 AM
I am sure it is quite likely that people with ASD went undiagnosed in the past. But, as I scroll back through all of my experiences in communities I can't find the 1-64.For instance I cannot think of one child that would have met ASD criteria in my Elementary School, my sleepaway camp, the beach community we went to in the summer, Jr. High, High School, College, even all of my early jobs working in mental health with adults in the early '90's ( a lot of MR, Schizophrenia, but not Autism). I live in Cambridge, MA and I am involved in work with the Homeless Shelters, Residential Care and Adult Outpatient Clinics and I can tell you that they do not have Autistic adults in them. I am not seeing these folks in the supermarket, on the sidewalks, or in the Library. I politely disagree. I do not believe that there are 1 out of every 64 adults living with ASD. I do not believe that the epic rise in Autism has anything to do with better diagnosis.
Posted by: alison macneil | June 11, 2009 at 09:28 AM
This man is living in a fantasyland. How do you "miss" a kid with autism? And the "better diagnosis" line is a bad joke, since most kids are diagnosed by teachers or family members months or years before an official medical diagnosis.
Is this eminent professor really so stupid, or is he a knowing member of the propaganda campaign?
Posted by: Julie | June 11, 2009 at 09:13 AM
It seems very strange that the "professionals" of the past were unable to tell that children who could not talk, children who could not participate in a classroom, children who were tantrumming as teenagers or banging their head against the wall, were "ignored" and "undiagnosed". However, mysteriously, once we hit the 1990's, doctors became so much smarter that they could actually notice these signs. In my 3 year old child's case, the doctor was so smart, it took about a whole hour to get a diagnosis. Probably not rocket science. I think its just a distraction from the thousands of us who have reported that our child was fine until reaction to vaccination. Its easier just to say it was always here but overlooked and not connected to a changing vaccination schedule. However, I do appreciate that the doctor courteously responded to the letter instead of ignoring it. Thank you.
Posted by: A. F. | June 11, 2009 at 08:10 AM
dear Simon
Firstly can I congratulate you on reading age of autism
Putting it bluntly I am sick to death with seeing you on the BBC and in the printed media
How are we expected to be taken seriously in the if our only expert sends out such a confused message?
With one breath you are saying that our children are so well suited for the computer age and the next breath they are struggling for educational services.
you research into genetic disposition then worry about it leading to eugenics and a lack of mathematicians
You marvel at the genius of musical and artistic savants but completely ignore the 24hr care the same individuals require.
you announce 1 66 children have autism but still have not been able to identify anywhere near that number of adults.
You perpetuate the myth that autism is at best a personality disorder and at worst a difference in "brain wiring" to be wondered at.
how does this help those trying to get services and medical help.
I made a comment about your role at the UK Charity Research AUTISM
you admit that the environmental factors are widely excepted ,so why is there no relevant research in the UK and why are 90% of the research autism experts from the mental health field? as I said before autism is not a mental illness
also as a side note you may like to add Age of Autism to the list of sites on the weekly news review email!
I didn't sign up to this list to hear about measles outbreaks in Wales or MMR being safe every single week.
Posted by: mark h | June 11, 2009 at 08:00 AM
Perhaps Simon Baron-Cohen would like to respond to Clifford Miller's 'Japanese data shows vaccines cause autism' featured below. The evidence here is strongly consistent with vaccination being implicated in autism, and also not consistent with autism being of static incidence across generations.
http://www.ageofautism.com/2009/06/japanese-data-shows-vaccines-cause-autism.html
Posted by: John Stone | June 11, 2009 at 06:24 AM