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Did the DSM Create an Epidemic of Asperger’s?

Did the DSM Create an Epidemic of Asperger’s?

There’s an ‘epidemic of Asperger’s,’ says psychiatrist Dr. Allen Frances in a December 29th NPR story, and he knows why, or so he says.

The Diagnostic and Statistical Manual of Mental Disorders contains the diagnostic criteria for psychiatric disorders and is sometimes referred to as the “bible of psychiatry.” As the chair of the DSM-IV Task Force, Dr. Frances edited the last edition of the DSM, the DSM-IV. And, it was the DSM-IV that classified Asperger’s Syndrome as a separate disorder from autism, with the latter seen as a more severe condition. From NPR:

“Pediatricians and child psychiatrists would see kids who could talk but who had social discomfort — severe social discomfort — and awkwardness and a very restricted and impairing level of interests and activities, and they wanted a diagnosis for this,” Frances says.

A study was done to figure out how common Asperger’s was, and the results were clear: It was vanishingly rare. Then Frances put it in the DSM, and the number of kids diagnosed with the disorder exploded. Frances remembers sitting in his condo reading articles about this new epidemic of Asperger’s that was sweeping the nation.

“At that point I did an ‘oops,’ ” he says. “This is a complete misunderstanding. It was distressing. Quite distressing.”

Dr. Frances suggests that there has been an ‘epidemic’ of Asperger’s because school districts, parents and others are applying the diagnosis upon too many children ‘”who previously might have been considered on the boundary, eccentric, socially shy, but bright and doing well in school would mainstream [into] regular classes.”‘ Now, says Dr. Frances, if a child receives a diagnosis of Asperger’s, he or she can get ‘”into a special program where they may get $50,000 a year worth of educational services.”‘

Dr. Frances is, it seems, suggesting that Asperger’s is a sort of ‘trendy diagnosis‘ to give a child as described above, with the intent of getting that child (expensive) special services.

As NPR reports, Dr. Frances has become ‘the new DSM’s most prominent critic.’ A revised version, DSM-V, is due in 2013, and has so far been widely critiqued. Asperger’s Syndrome, first recognized by the American Psychiatric Association in 1994, will be dropped under the new revisions to the DSM-V and subsumed under the category of “autism spectrum disorder.” Collapsing ”Asperger’s” into “autism” has caused quite a bit of consternation (here are one mother’s views), with many stating that Asperger’s and autism must be separate conditions.

While I do think Dr. Frances has a point about how the DSM criteria can be linked to changes in the rates at which a diagnosis is given, I really think it is inaccurate and, if I may say so, more than a bit insensitive to suggest that anyone seeks a diagnosis of Asperger’s for a child with the sole desire to get a child ‘into a special program.’ As my own son Charlie is on the severer end of the autism spectrum, his diagnosis and the extent of his needs have rarely been in question. But too many of my friends who have a child with Asperger’s or with PDD-NOS or ‘mild’ autism have had to struggle mightily and persistently to get their child the education and services he or she needs simply to get through a school day in one piece. 

Dr. Frances’ comments in the NPR story do a great disservice to parents of children with Asperger’s and to individuals with Asperger’s themselves, who have many challenges that can seem invisible.

::::::::::::::::

A note about the whole issue of why the prevalence rate of autism has risen so dramatically in the past decade plus:
Some do speak of an ‘epidemic of autism,’ and the search continues for some environmental factor. But in considering why an average of every 1 in 110 children in the US has an autism spectrum disorder (according to the latest statistics from the Centers for Disease Control and Prevention), we need to continue to keep in mind factors such as: 


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118 comments

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9:24AM PST on Dec 6, 2012

In my country there is no special services for aspeger sindhrome and we mothers are fighitng for some, because therapy is really expensive. All we have here and it is very complicated to obtain is to get in to a primary school who has an integration program who acepts children with asperger's. And there they could have speach therapy one hour a week and if you are lucky you find one with an actual physical therapist who give one hour a week in a large group with kids with several kinds of problems from speech problem, adhd, to aspeger's. And that's all
But for this i live in the capital city of my country and my son is 11 and for all the schools in the city there is only 10 who gives this service... 10 in a city with 5 million people!!!
In Chile who is not the average poor country to be a south american one.

If in US. Change the status of asperger sindhrome... Our medics will take it away too, because that is what they do. So the 10 primary school will disapear! And the few children who has some treatment will lose it forever!

This is more serius not only affect US. But other countries in south america at least!

9:33PM PST on Nov 28, 2012

I was diagnosed with Asperger's at age 30. I sure wish I could have gotten some of those "special services." If I had I might have a job today.

5:35AM PDT on May 23, 2012

You can call it Asperger's or autism or downright eccentric, but it would be a terrible shame to stop helping anyone with AS. It really would.

11:08AM PST on Jan 21, 2012

As the mother of an adult son with A.S.---it is real. It has taken many years of training & adapting to the world and working with my son to guide him to be as independent as possibe.. Any negative occurance or thought shifts into PTSD or 'playback' , as if it happened yesterday. Foods, noises, dogs, people... all can be quite challenging at times. Crowds are bad. Asperger's Syndrome should forever remain separated from Autism in the DSM. Understood that it is 'on the spectrum,' however; it is far more difficult to deal with and treat professionally by someone with specialty in Asperger's.

2:29PM PST on Jan 20, 2012

As the father of a daughter with Asperger's Syndrome, I can attest to the fact that it is a very real disability. My daughter has been bullied since 4th grade and was once put in a dumpster by her middle-school bullies. She has extreme sensory sensitivity and has complained about foods, clothing (labels, tags, roughness, etc.), sounds (fire drills, recess bells, dogs barking, etc.), smells (food being cooked, frogs, smoke, etc.), movement (e.g., I can't drive around corners on the highway without causing her to experience pain), crowds (she experiences emotional distress in store lines, crowded restaurants, school assemblies,, etc.), etc. She is not able to judge time and cannot organize her life. Unexpected events result in emotional meltdowns. She can only function well when her life is highly structured and where coming events are clearly understood by her well in advance. When the schools she attended attempted to provide an appropriate learning environment they were never successful. She attended over 13 different schools before she graduated from high school, and in between schools she was home-schooled by her mother and me (both with Ph.D.s in education). She was seen by five or six different psychiatrists and they were not very helpful. They diagnosed her as having OCD and Asperger's Syndrome and prescribed pills. Some of the pills caused her to gain weight but did not eliminate her constant anxiety and meltdowns, but did reduce her OCD repetitive behaviors.

5:37AM PST on Dec 13, 2011

Asperger's and Autism should remain forever separated. I teach students with Autism; usually classified as severe. They do receive a free and appropriate education. The student with Asperger's has many hidden features that may not show in the classroom until middle school. They can get mistaken for having ADHD, OCD, and then finally diagnosed with Asperger's Syndrome. Physical Education, lunch any unstructured activities are very brutal for them. The unwritten, or a hidden curriculum is not taught on a regular basis. And yet, if they are high functioning, they are bullied, and misdiagnosed & ,misunderstood. The high-functioning person with Asperger's may refuse servoces/social therapy because it is combined with people they consider too violent. As a teacher and mother, it is difficult. I wish they were kept separate.

10:58PM PDT on Mar 16, 2011

It sounds to me as tho the indicators given in the DSM were far too vague. This merely suggests the writer was too lazy/stressed or ill-informed to aim for precision.
And while it is handy for us unqualified folk to have some idea of what condition we may be looking at; we are not diagnosticians. And qualified diagnosticians need to have their qualifications withdrawn if they are reduced to diagnosing a patient from a single publication!
I can't say for sure if my father had Aspberger's; he passed before I'd ever heard of it. Yet the adult Aspbergers with whom I spoke cited enough indicators that I was mentally ticking every box. And in my heart I believe he was an Aspberger & that at least 2 of my sibs lean that way too. He was a genius. And an extremely dysfunctional & tortured/torturing person besides.
In this era of woefully underfunded & inadequate education I cannot shame any parent who may attempt to use an editing error in a medical text to secure their child better-quality education. It is the very essence of good parenting to strive to better conditions for our offspring. To do otherwise would be neglectful.
Just as neglectful as the writer, then editor & ultimately publisher of the afore-mentioned DSM text.
Aspbergers is a serious & far-reaching condition with emormous sociological ramifications. Left untreated it leads to violence, child abuse, drug addiction & utter misery for anyone in the Aspberger's immediate vicinity. As well as

3:04AM PST on Mar 6, 2011

Again, this appears to be the same in the UK. Kids only have to be naughty in school a few times in order to be labeled "autistic" or another favourite is "ADHD". Sometimes, it is a case of these children requiring more input from teachers & acceptance for who they are.

9:31PM PST on Feb 10, 2011

I can appreciate that those of you with children with autism or asbergers need the help of professionals to give your children their best chance, but it does seem that western societies specialize in over-diagnosing ourselves. Autism is serious, and my friend who has such a child, has had a hard life, with her life completely taken over by his diagnosis. That is the life of a parent. The doctor has a point, though. So many more diagnoses AFTER it was put into "the book"?

3:28AM PST on Jan 5, 2011

Aspergers is a form of autism, that is sometimes associated with genius. (Mozart was possibly an Aspergers individual). The way the term is used is too self satisfied and possibly often inaccurate. As it will be present from birth, schools are the first extra domestic that such a person, and his peers, will confront.

Why are some children anti-social? There are many reasons why they can be difficult, ranging from serious family dysfunction, hyper activity problems, any other inability to concentrate, or they are just plain rude and intentionally disruptive. The school's primary role is to look at these considerations.

Many genius children have an ability to concentrate fixedly and their social priorities don't have time to develop. Shyness is a like result of this. The capacity to be exclusive at this stage of life must pay off intellectually. Concentration was surely one of Einstein's assets. OK so just thinking hard doesn't alone guarantee brightness, but goes a long way to foster it.

As has been said, diversity is part of a rich human state. One boy may love playing football, while his brother loves reading. Neither are "not normal". Normality is purely a statistical concept of average. Few persons are "above average" everywhere and few are below. Indeed this in it's self would define abnormal or subnormal.

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