According to a Rutgers study published earlier this year, autism rates in the US have increased some 500% over the past 16 years.
And “profound autism” cases — those who are likely to need around-the clock care for the rest of their lives — now make up one in four diagnoses, according to a recent paper published by researchers at the CDC.
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.
By 2007, one in 150 children were diagnosed with the condition. Today, according to a recent CDC report, 1 in 36 children have autism.
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.”
Last year, the NIH awarded researchers at the University of Virginia $100 million for autism-related research.
Both Mottron and Frances stress that autism is a very real condition that affects many Americans.
However, Mottron said, the condition is being diagnosed at a rate that’s simply not consistent with reality. Frances agrees.
“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.”