Autism is “Fashionable”?


Autism rates were rising when my son was diagnosed with autism 12 years ago in July of 1999. Before too long, we heard talk of an “epidemic of autism” and, over the past decade, we have watched the figures change, to 1 in 166, then to 1 in 100 and 1 in 94 in New Jersey where we live and now, according to aárecent study of children in South Korea, to 1 in 38.áIn an editorial,áFrances Allen, chair of the DSM-IV Task Force and professor emeritus of psychiatry at Duke University School of Medicine, says the reason for the increase is that autism has become a “fad diagnosis”:

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.

These are fighting words, especially Allen’s rather condescending statement in the last sentence. áHis claim of autism as a “fad diagnosis” seems to rest on a narrow definition of what it means to live with an “extremely disabling condition” andáof what it means to be “severely autistic.”

According to Allen, the reason for the increase is that the criteria for diagnosing autism have been expanded too broadly, to the point that, if your child has any sorts of delays in their speech and development, parents (eager to get expensive school services) seek a diagnosis. áAllen blames over-publicity of autism by advocacy groups, parents and others and a willingness to count cases of autism according to broader criteria.

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 na´ve interpretation of epidemiological results.

Allen is directly challenging the theory that better diagnosis and increased understanding at identifying and detecting autism account for much of the rising prevalence rate.

Measuring “increased understanding and knowledge of autism” is indeed not something that one can do and the “better diagnosis” theory is roundly disputed by proponents of theories of environmental agents as causing autism. Allen’s criticism of this theory differs though: He seems rather to mock those wishful thinkers who have, later in life, sought an autism diagnosis. Either you’re severely autistic, or you’re just a label-seeker.

Our son Charlie can be said to fall under the latter category, as his speech and academic and cognitive abilities are very limited, he will require 24/7 care for all of his life andáhas a history of sometimes extremely challenging behaviors that have made schooling in a separate center for autistic children necessary and preferable. However, Allen overlooks the fact that just being able to have more academic and communication abilities, to have a normal IQ, to go to college and even be married, does not mean that one does not have extreme challenges that can limit one’s opportunities and have effects on one’s health, income and many other areas.

Allen’s limiting an autism diagnosis to áonly a few who are severe according to his definition is dismissive and overlooks the fact that many do need support and understanding about their differences. He bases his claims on an assumption that, “back in the days” when autism was rare, we — well, doctors, psychiatrists, psychologists — knew precisely what autism was, diagnosed it accurately and did not miss any cases. Has he forgotten that “back in the days” many believed that the cause of autism was parents? That people would hardly seek out a diagnosis for their child that carried such a huge stigma? That an autism diagnosis was the equivalent of having a scarlet A on your forehead, as parents were blamed for causing autism by emotionally withdrawing from a child? That one reason for the increase in autism diagnoses is that we as a society have become more accepting of and open about having a child with a disability?

That, in other words, it might really be better that autism has become so “popular.” At least children and others who need help and support have the chance of getting these rather than suffering due to some unknown, unnamed condition.

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Christopher M.
Christopher M.3 years ago

Claire Sainsbury is that you? Martian on the Playground!

Christopher M.
Christopher M.3 years ago

A professor said the same thing, that a counselor gave me the diagnosis to give me some extra help....

Try computer programming. Ya'll need a good occupational therapist. I can work for hours on computer coding in CF9.

Christopher M.
Christopher M.3 years ago

Timothy m would you prefer giving all us autistics a good dose of Zyklon B? It would save your tax dollars like it saved Nazi Germany's.

Ask an Asperger's mom how fashionable it is having a child that tests her limits, especially if her husband is not on board helping. My dad was too busy working to help my mom....

William K.
William K.3 years ago

I think that there is a current of fad-ism of autistic diagnosis. I think that one driving force that is not being discussed, is the question of the "tyranny of the mythical normal."

Robert Vincelette

Society has become less tolerant of the most trivial and harmless eccentricities, ever more demanding that we all conform to ever more narrow cultural standards that are downright offensive to freethinking people. Often, autistic people who by their nature are candid, fail to flatter and to join a world around them that demands that we all apply bicycle tire pumps to the self-esteem of the latest rock star from American Idol. They accidentally offend society and society says, "You are sick" because you are not passionte about sports like everybody else or you don't think and live the way society wants you to think and to live. When you can't compete in the Miss America Pageant ritual of the job interview and every door is slammed in your face you give up and say, "You win, I'm too sick and disabled to conform to your culture and to like what you demand that I like and to feel what you demand that I feel. Put me on some kind of disability pogram that will even the odds in your competitive society." If this is immoral because society thinks it is entitled to discriminate en masse against every trivial and harmless eccentricity, why is it not immoral to make money by such things as junk food, the lottery, and liquor stores?

Liberty G.
Liberty Goodwin4 years ago

It's not only vaccinations, Children - and adults- everywhere are being increasingly exposed to hundreds of chemicals - including pesticides, cleaning materials, fragrance chemicals, plasticizers and more. Many of these cause endocrine disruption and neurological effects - so it is not surprising at all that autism has grown. For more info on this and other concerns, see:

Claire Sayers
Claire Sayers4 years ago

What makes anyone think autism is a fashionable diagnosis? I was diagnosed with an autism spectrum disorder before it even became a household term. Don't insult my intelligence by saying it is "just a fashionable diagnosis".

Hugh W.
.4 years ago

In many cases to get services or to get insurance to pay for certain things, there has to be a diagnosis of something. Look at all of the created disorders like Oppositional Defiant Disorder. Many of these are so that people can get money to be treated for something else. I am not trying to discredit the psychology discipline as I also have a degree in psychology, but I am just stating my opinion. I think a lot has to do with our "fix-it-now" culture in which we have a drug for everything. I would believe in many cases that there are external substances that may cause or even increase the chance of autism, ADHD, etc. One also has to look at the diet of the parents and determine how much the preservatives and high sugar content of our foods contributes to certain conditions and diseases. Though diagnosis has increased tremendously, other factors have also increased tremendously.

Coral Bentley
Coral Bentley4 years ago

Wow. I am really surprised to see all the comments saying that kids without autism spectrum disorders are being given the label out of convenience or status of some kind. I had to pay $2200 three years ago to have my son submitted to a battery of tests which determined not only Aspergers (an autism spectrum disorder according to DSM-IV) but also dyslexia and some other learning disabilities. I fought for an assessment so the school would finally consider supporting my son - he's struggled since kindergarten, even though he is very bright and has average to high grades, and still bears considerable anxiety everywhere except at home. But maybe he's not disabled enough for Allen and many other commenters.

timothy m.
timothy m.4 years ago

Autism may not be fashionable, but it's clearly the cause du jour nowadays. Lots of shrinks and special schools and others are making a boatload of money off the exponential increase in autism diagnoses -- most of it my tax dollars.