Health and Medicine
The Autism Generation
Allen Frances
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SAN DIEGO – Not long ago, autism was among the rarest of disorders, afflicting only one child in every 2,000-5,000. This changed dramatically with the publication in 1994 of DSM IV (the manual of psychiatric diagnosis widely used around the world). Soon, rates exploded to about 1 per 100. And a large study in South Korea recently reported a further jump to 1 in 38 – an astounding 3% of the general population was labeled autistic. What is causing this epidemic and where are we headed?
The natural reaction to any plague is panic. Parents are now fearful that every delay in speech or socialization presages autism. Childless couples decide to avoid having kids. Parents with autistic children are desolate and desperate to determine its cause.
The British physician Andrew Wakefield’s vaccine theory became wildly popular among parents, many of whom began to withhold vaccination (thus subjecting their own and other children to the risk of entirely preventable, and sometimes serious, illnesses). Vaccination seemed a plausible cause because of the fortuitous correlation between getting shots and the onset of symptoms. Wakefield’s work has now been thoroughly discredited as incorrect and dishonest science. But fear of autism is so great, and the reactions to it so irrational, that in some circles Wakefield continues to be revered as a false prophet.
Other factors must be behind the sharp rise in the diagnosis. Before DSM IV, autism was among the most narrowly and clearly defined of disorders. Symptoms had to begin before age three and comprised a striking and unmistakable combination of severe language deficits, inability to form social relationships, and a preoccupation with a very narrow set of stereotyped behaviors. In preparing DSM IV, we decided to add a new category describing a milder (and therefore much more difficult to define and distinguish) form of autism, called Asperger's Disorder. This seemed necessary because some (still quite rare) children presented with more or less normal language development, but with grave social and behavioral difficulties. We knew that Asperger’s would likely triple the rate of autistic disorders to about 1 per 500-1,000, but this doesn't explain the new rate of 1 per 38.
A second possible explanation for the explosion in autism is that previously missed cases are now being more accurately diagnosed. This is probably a factor, but again only a minor one.
Perhaps, then, an environmental toxin is causing an epidemic outbreak of autism. This has been the most popular theory, but it, too, is a small factor, at best. There has been no sudden environmental change since 1994 to account for an explosion in rates. This doesn't entirely disprove an environmental vector, but it does make the odds quite remote – especially since there is a far more plausible explanation.
The most likely cause of the autism epidemic is that autism has become fashionable – a popular fad diagnosis. Once rare and unmistakable, the term is now used loosely to describe people who do not really satisfy the narrow criteria intended for it by DSM IV. Autism now casts a wide net, catching much milder problems that previously went undiagnosed altogether or were given other labels. Autism is no longer seen as an extremely disabling condition, and many creative and normally eccentric people have discovered their inner autistic self.
This dramatic swing from under- to overdiagnosis has been fueled by widespread publicity, Internet support and advocacy groups, and the fact that expensive school services are provided only for those who have received the diagnosis. The Korean study, for example, was financed by an autism advocacy group, which could barely contain its enthusiasm at the high rates that were reported.
The Korean study paid no attention to the bias that haunts all epidemiological studies, which always overestimate pathology rates by including as disorder even very mild presentations that do not have clinical significance. It is entirely plausible that 3% of the population may have some smidgen of autism, but it is entirely implausible that so many would have symptoms severe enough to qualify as an autistic disorder. Reported rates should be regarded as an upper limit, not as a true reflection of the rate of actual mental disorder.
Human nature, neurological illness, and psychiatric disorder all change very slowly, if at all. Environmental toxins do not usually just pop out of nowhere to make a condition 100 times more common than it was less than 20 years before. A more plausible scenario is that DSM IV gave autism purchase by introducing a milder form that is close to the extremely populous boundary of normality. Then autism took flight on the wings of definitional diffusion, internet contagion, financial incentive, and naïve interpretation of epidemiological results.
The autism “epidemic” is set to spread further starting in May 2013, when the next revision of the diagnostic manual (DSM 5) will be published. The DSM 5 definition of an “autistic spectrum” will cast an even wider net, capturing many people now considered to be normal or to have another disorder. Their symptoms will not have changed – just the label.
Allen Frances MD was Chair of the DSM IV Task Force.
Copyright: Project Syndicate, 2011.
www.project-syndicate.org
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usethebrainsgodgiveyou 06:31 19 Jul 11
ChristineMack 07:32 19 Jul 11
Hmm...I didn't know Cheerios gave out doctorates. Would you like to take care of my fashionably Autistic children for a day Mr. Allen Frances M.D.? As a matter of fact all us fadtastic parents will give you our Autistic children for a day since you are so qualified. There is a term in the blogging world (pardon me if I belong to another fad) its called link bait. Its when someone talks out their ass and riles people up for attention. Congrats. You have sunk to the levels of other interweb trolls.
jillsmo 08:00 19 Jul 11
My son was stimming BEFORE it was cool
http://yeahgoodtimes.blogspot.com/2011/07/my-son-is-autism-hipster.html
gpherder 01:03 20 Jul 11
This article in no way denigrates children who actually have autism. It is a devastating condition, and creates hardships for both parents and those afflicted with it.
The author is, however, 100% correct about the over-diagnosis of this condition. Like ADHD before it, this is the new designer disease. Parents who want to believe their children's behavioral problems in no way reflect upon them seek to have their children diagnosed with anything at all which will point the blame elsewhere.
Let me state again: Those actually afflicted with this condition suffer immeasurably, as do their families.
But not everyone diagnosed with this condition has this condition.
eastviewlota 01:15 20 Jul 11
I strongly believe as a parent with ASD the Author was not out to upset parents with loved ones with Autism. Autism is the new vogue of disabilities and there are Groups and Individuals who go under the banner of Autism who are making a small fortune in doing conferences all over the world and setting up websites offering hope to parents out there of some miracle cure or pretend to be concerned but all they are is concerned with there bank balances. I am in Ireland were this article was published on a group named Irish Autism Action who have turned Autism into a major money spinner and we have Dr.T Attwood and T Grandin who speak at conferences worldwide but do they do it for free,I doubt it very much.So please don't become to defensive read between the lines it's not aimed at parents but in my humble view the industry that has become Autism.
ejwillingham 02:20 20 Jul 11
For those of you asserting that Frances is correct, I'd like to see the data...data from him, data from you, but some actual data. You are making some really indefensible assertions here if you have no data to back up what you're saying. "Gut" doesn't count here. And Frances does incalculable harm, especially when he asserts, falsely, that parents seek these diagnoses to obtain school services that run into the five digits. That alone demonstrates that he has no idea what he's talking about.
Two things must be demonstrated here to take any of what Frances writes seriously: (1) Studies to support what he asserts, science-based evidence only, no "intuition" or anecdote; and (2) any evidence whatsoever that he has the CV to support recent and specialized knowledge specifically in the pediatric population at all, and more specificaly involving spectrum disorders in this population. I have yet to see either of these in the from-the-hip blatherings I've read from this source around the Web. Having the initials M.D. after your name doesn't make you a specialist in a given field any more than having Ph.D. after mine makes me an immunologist instead of a developmental biologist.
autismarmymom 02:22 20 Jul 11
I am sick to death of this argument. It is ignorant and so wrong-headed I about pop an anuerysm every time I hear it. Ask any teacher that had a long career over multiple generations how many kids like mine they saw over the course of their careers. I never in my life laid eyes on anyone like my daughter in all my 40 years, but now they're everywhere and it's not just because of the places I'm hanging out. And a DOCTOR says there have been no environmental changes in recent years? Are you high? There are billions more toxins in our environment, and why don't you check on the rates of prescription drug use over that period of time? I've met alot of autistic kids in the past 10 years, and never once did I think one had a "fad" diagnosis. No wonder I've never heard of you. You are a joke.
joaquin 07:07 20 Jul 11
Dear Dr Frances,
My son was diagnosed with Aspergers Disorder. We always knew he was a different baby but although he was saying words and developing normally all speech stopped at age one. He would not participate in activities with other children all the way through Kindergarten and did not speak again until he was almost 4. I cannot tell you how hard this is as a parent; really, nothing can describe it but our son, it turns out, is if not a genius then close in many different fields including music, chess, language, and mathematics and yet he will always be different, lonely, socially separate because he is autistic and incredibly intelligent. The rest of us, even though we are college educated are illiterate compared to him.
This is a very complicated thing and the DSM xx does it a disservice. For example, what was diagnosed by his special Ed. teacher as motor control problems is in fact a finer motor control learning process that has resulted in an accomplished musician at the age of 11 who plays the violin and piano. What started out as unreadable hand writing is now a unique thing of beauty.
Here's a suggestion, perhaps there is a group of people getting together who didn't used to get together. Perhaps the geek factor, so desired in our economy is also desirable in other ways.
Those of us who are geeks know that we give up a lot, but that we have wonderful gifts too. Maybe, all that social stuff missing in autistic people is too much overhead, too much noise, for someone who will understand technical ideas, mathematics, and science at a higher level.
usethebrainsgodgiveyou 02:40 20 Jul 11
For some reason I have trouble posting. This is my last try.
I agree with Dr. Frances. We are demonizing childhood. Billions of parents have raised their children without the help of psychology, and the labels they had then were hurful, but not "mental illness". We are all mentally questionable, anyhow, but we are medicalizing difference. The "shadow syndromes" become the syndromes. Drugs for every situation...How did
nuttydingo 03:28 20 Jul 11
I'm troubled by the current climate of irresponsbile journalism. To assert, without the platform of strict, diligent study of hundreds of people bearing this diagnosis, that perhaps it's the disorder du jour is, at best, insulting. It's insulting to doctors, parents, educators and, mostly, to those that live with the disorder ever day of their lives.
What if, every single person carrying the diagnosis really has it. Scientifically, would that not mean that autism is, indeed, on the rise? And if so, then the natural inclination would be to study the origin and cause of the disorder.
Why not do that then? Why not channel our energy and knowledge into solving a problem, rather than insinuate that doctors and parents are working in cahoots to falsely exaggerate the statistics of a real disorder? Because to suggest such a thing just sounds...crazy.
You should be ashamed of yourself. What a waste of the written word this drivel turned out to be. I suppose if one has nothing to contribute, then they must find a way to subtract.
Please excuse me now. The sound of the lawnmower outside is like a thousand hot pokers in my son's head, and I must try and stop his screaming.
Put that in your DSM IV pipe and smoke it, Allen.
ToniKamau 10:14 24 Jul 11
Is this just chance?
Whenever I follow a thread bout autism it soon turns out that the suffering of the family members is beyond bearing- and a certain aggression lies in the air.
Contradicting the wisdom that people who are suffering usually become more patient, understandig and forgiving.
The accusations of many bloggers against this balanced article are beyond reason and strongly suggest further investigations into the role of these family members in the aetiology of the disease!!!!!!!
DonnaL 06:44 02 Aug 11
Looks like Dr. Frances chose to completely ignore the elephant in the room when he stated, "There has been no sudden environmental change since 1994 to account for an explosion in rates...Environmental toxins do not usually just pop out of nowhere to make a condition 100 times more common than it was less than 20 years before."
Um, no, Al, they don't just pop up out of nowhere. Rather, they're not so cleverly disguised as government mandates.
Vaccine schedule for 1989:http://www.cdc.gov/vaccines/pubs/images/schedule1989s.jpg
Vaccine schedule for 2011:http://www.cdc.gov/vaccines/recs/schedules/downloads/child/0-6yrs-schedule-pr.pdf
dulcemareas 03:51 27 Oct 11
Regardless of the label, I agree that this autism or not epidemy is a pretty serious indication that our children's health is drastically affected by our ways of life?
I have learned to deal with the fact that my children are constantly bombarded with toxins from all areas of their lives: water, food, stress from people, medicine that kills their immune systems, etc and that their bodies and mind eventually are so poluted that their behaviors completely change and shows the effect of these polutants?
They are, like many children, "highly senstivei people", who are completely overwhelmed by our very stressful lives.... We as adults are foolish to think that our ways of life have not impact our children's mental and physical health.
And even more foolish to think parents do not know something is bothering their children. The medical profession has failed families and children for too long. It may not be autism that a majority of these children have, but it is something... and it is really tiresome to only be able to have access to doctors who can't act beyond helping pharmaceutical greed... (I am generalizing and apologize if I offend medical professional who actually do look beyong the obvious labelling and drug treatment). But my personal experience has been very negative with the medical profession and yes, I would agree that if anything, they are the one creating a fad in order be able to categorize ailments.... instead of looking for and helping families understand what health really is...
alxbal
adami 05:49 01 Dec 11
I understand the FDA has linked psychoactive drugs to a number of birth defects.. I wonder if the increased rate of autism, excluding diagnostic criteria, is related to the use of these drugs. This is a testable hypothesis through a bioinformatics study if the right databases exist. It may even be a simple exercise. If the CDC or the NIH has a diagnostic database, back out the DSM effect and compare that to increases in the use of Prozac, etc. Databases for the latter certainly exist.
HLahore 05:10 08 Dec 11
Autism is strongly associated with lack of vitamin D
Further from the sun ==> more autism
Darker skin ==> more autism
Cloudier ==> more autism
Less maternal vitamin D ==> more autism
Birth at time of low vitamin D ==> more autism
The increase in autism has occurred at the same time as the huge decrease in vitamin D
http://www.vitamindwiki.com/tiki-index.php?page_id=605
karen123 01:53 23 Feb 12
Thanks for the unmatchable diary.it was rale useful for me.navigator sharing specified ideas in the instant as symptomless.this was actually what i was labour for,and i am voluntary to came here!
ejwillingham 06:22 19 Jul 11
I've read comments before from Frances that I found to be as irresponsible and uninformed as this steaming pile is. Might I suggest that Dr. Frances look into taking up golf permanently and cease this nonsensical, uninformed commentary? Fashionable? A fad? With this broad brush, Frances diminishes the experiences, anxiety, and anguish of parents and autistic people everywhere with his irresponsible, dangerous musings. Does he offer any evidence-based information to provide to support these assertions? No, he does not.
I've read studies that *do* support the hypotheses of improved diagnosis as an explanation for the greater number of cases. I would expect a more careful presentation, substantiated with data, from someone of Dr. Frances' former stature.
Why does he insist on continuing this campaign of misinformation and unsupported assertions? Is it simply to cause pain to people living very real lives with very real autism? To plant in the public mind a large seed of doubt about the realities of these lives? To make those who are unfamiliar about autism think that everyone who has an autistic child is simply in pursuit of a fad, trying to be fashionable? How sadistic, irresponsible, and indefensible. When was the last time Dr. Frances was in clinical practice, working with autistic people? Ever? Recently? How is he qualified even to speak on this topic, much less to do so without offering an IOTA of evidence or data to back up these reckless assertions?