Dr. Allen Frances blames himself for “over diagnosis”

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25 Apr 2023, 9:56 am

Doctor who helped broaden autism spectrum ‘very sorry’ for over-diagnosis

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According to a Rutgers study published earlier this year, autism rates in the US have increased some 500% over the past 16 years.

But is the rise in autism really the result of better screening, or are we over-diagnosing regular behavior?

Dr. Allen Frances told The Post that he is “very sorry for helping to lower the diagnosis bar.”

In the early 1990s, Frances spearheaded the task force that, in his own words, “loosened the definition of autism” for the DSM-4, the so-called bible of psychiatry.

Now, Frances said, he fears his work “contributed to the creation of diagnostic fads that resulted in the massive over-diagnosis of autistic disorders in children and adults.”

Ten years ago, Frances, a world-renowned psychiatrist, wrote “Saving Normal: An Insider’s Revolt Against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life,” which explored how the medicalization of behaviors once deemed normal has become common practice.


More specifically, he took aim at the DSM for turning millions of healthy Americans into what he called “mental patients.” The first DSM, published back in 1962, contained about 60 mental disorders. The current edition has more than 300.

And Dr. Frances finds himself in a rather unique position. Although the prominent psychiatrist has played a key role in highlighting various deficiencies in the DSM, he has also, he said, “partly caused the problem” of autism over-diagnosis.

“Careful field testing suggested the new definition would just triple the rate,” he said of the research for DSM-4. “Instead it quickly multiplied almost 100 fold. More clinicians began labeling both normal diversity and a variety of other psychological problems as autistic.”

In the early 1980s, the autism rate was 5.5 per 100,000. between 1995, one year after the DSM-4 was published, and 1997, the rate shot up to 44.9 per 100,000.

Dr. Laurent Mottron, a psychiatrist who has spent 42 years studying autism, told The Post, “Looser definitions and blind confidence in intrinsically over-inclusive [definitions] have directly contributed to the growing problem”.

Compared to the DSMs of yesteryear, Mottron said, today’s version — DSM-5, released in 2013 — is full of “vague and trivial definitions and ambiguous language that ensures more people fall into various, abnormal categories.”

Moreover, he added, “It associates autism, which now exists on a spectrum, with a reduction of social interest, which can result from an indefinite number of psychological and societal issues.”

Mottron believes autism, generally, “is currently located too high in the hierarchical classification of childhood conditions. It now coincides with having a social problem.”

Frances echoed the criticism: “The DSM-5 loosened the diagnosis of autism even more by introducing the concept of autistic spectrum, thus further obscuring the boundary between mental disorder and normal diversity.”

DSM-5 “worsened everything by melting three conditions” — autism, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) diagnosis and the Asperger diagnosis — “together and by de-specifying the autism diagnosis even more,” Mottron said.

“Ironically,” added Mottron, “although the DSM-5 initially devised to make the diagnosis more specific, it actually had the reverse effect.”

According to Mottron, the skyrocketing rates of autism in America are also tied to sociological reasons.

For one thing, there is a considerably “less discriminative image” of autism than before. Furthermore, the “self-amplifying circle of autism is more known, more searched for, and more institutionally supported than is the case for other completive diagnoses.”

Mottron also noted that “autism-related research gets more funding than rare diseases.”

Both Mottron and Frances stress that autism is a very real condition that affects many Americans.

Although people often benefit from an accurate diagnosis of autism, an inaccurate diagnosis can cause harmful stigma, hopelessness, reduced expectations, and misdirected treatment,” Frances said. “Because the diagnosis of autism is so consequential and so frequently carelessly done, parents and adult patients should always get a second opinion whenever possible.”


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carlos55
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25 Apr 2023, 10:27 am

That’s quite a bombshell

As much as I hate the trivialization of autism through over diagnosis and stupid undiagnosed celebs and attention seekers jumping onto the label because they googled their life problems and autism.

Over diagnosis has meant more resources more awareness

So a true double edged sword where we can accept the bad for the overall good.

Although I can’t see it lasting too long


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MatchboxVagabond
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27 Apr 2023, 5:56 pm

carlos55 wrote:
That’s quite a bombshell

As much as I hate the trivialization of autism through over diagnosis and stupid undiagnosed celebs and attention seekers jumping onto the label because they googled their life problems and autism.

Over diagnosis has meant more resources more awareness

So a true double edged sword where we can accept the bad for the overall good.

Although I can’t see it lasting too long

It is, and keep in mind that being outside the diagnostic criteria does not mean that everything is A-OK. Somebody might meet most of the diagnostic criteria, and still be severely disabled in terms of doing the things that are needed to live happy and well-adjusted life. Many of the additional cases are in folks that are technically able to function, but pay such a heavy price for that, that the quality of life sucks.

I don't personally agree that it was a mistake. You've got folks like myself and some of the other people who were identified even later that got the shaft through a lack of any sort of assistance who would still not have an of it if the criteria hadn't been fixed. Adding additional diagnoses like was the case previously, just adds additional holes that people can fall through where none of the diagnoses quite get it right, so none of them apply.

There's always going to be disagreements about where the precise lines should be, but being slightly the wrong side of it isn't an automatic ticket to a normal life.



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27 Apr 2023, 8:01 pm

Overdiagnosis, and awareness being a double edged sword is old news to me.

It's one thing that the masses know of it's existence.
It's another if the masses actually knows what to do with it and know what it is doing with it.

But here's my question:

How much of this involves growing up narcissistic parents? Or neglect ones -- or worse, negligence parenting as a norm.

How much of this is sink or swim 'tough love' environment became abusive? Due to generational standards.

How much of this is getting involved in social media at teenage years at latest? It has something to do with activities and how modes of socializing is changed.

How much of this is society's higher standards of competitiveness and lower standards of preparing children in society?
This includes economic changes through generations -- 'the best of the best' (perfect grades, advanced development) is the expected 'norm', not for what it is; an exception.



Medicating 'the norm' abroad is not a news to me.
I can say the same with anxiety disorders and depression.

Heck, that's already old news related to, say, ADHD and people abusing it's treatments -- whether parents wanting a more convenient child by giving them downers, a teenager/adult wanting competitive edge with smart drugs.
Or something like short videos decreasing attention span during development.

How about the autism equivalent?
I won't be surprised if it's related to socialization and increasingly digitalized world.


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