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Under New DSM, Autism Diagnoses May ‘Significantly Decrease’

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The number of people diagnosed with autism could be reduced by nearly a third under new diagnostic criteria for the developmental disorder, researchers say.

Last May, a new edition of the Diagnostic and Statistical Manual of Mental Disorders, known as the DSM-5, introduced sweeping changes to the criteria for an autism diagnosis. The update did away with Asperger’s syndrome, childhood disintegrative disorder and pervasive developmental disorder, not otherwise specified, instead establishing an umbrella classification of “autism spectrum disorder” with clinicians indicating a level of severity.

Now, a study published in the Journal of Autism and Developmental Disorders is adding to worries that some who previously would have qualified for a diagnosis on the autism spectrum will be left out.

Researchers found that 31 percent of those who met the diagnostic criteria for autism under the old DSM may no longer meet the new standards. Without a diagnosis, children may not qualify for needed services, researchers said.

“We are potentially going to lose diagnosis and treatment for some of the most vulnerable kids who have developmental delays,” said Kristine Kulage of the Columbia University School of Nursing who led the study. “In many instances, children require a diagnosis of ASD to receive medical benefits, educational support and social services.”

Kulage and her colleagues reviewed more than 400 previously published studies to assess the impact of the changes in the updated DSM. They found that the number of children who will be diagnosed with autism under the new criteria will “significantly decrease” as compared to the old definition.

What’s more, in cases where children no longer qualify for an autism diagnosis, the researchers said that some also will not meet the criteria for social communication disorder — a new condition in the DSM-5 designed to account for those with communication difficulties but no other autism symptoms.

“This study raises a concern that a medical provider diagnosing a child under the new guidelines won’t find the child to be on the autism spectrum, when the same child under the old criteria might have been diagnosed with ASD,” Kulage said.

The study is just the latest to raise alarm bells about changes to the way autism is defined. Earlier this year, researchers looking at surveillance data from the U.S. Centers for Disease Control and Prevention found that nearly 1 in 5 children previously diagnosed with autism would not qualify under the new definition.

Even before the updated DSM was finalized, many advocates voiced concerns. That led those behind the revision to insert language into the autism definition stipulating that anyone with a “well-established” diagnosis of autistic disorder, Asperger’s or PDD-NOS under the old DSM should be considered to have autism spectrum disorder going forward.

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Comments (8 Responses)

  1. autismparent says:

    The autism dxes may drop but the kids won’t magically disappear. I don’t know how Ms. Lord and the DSM committee can sleep at night knowing parents who are already struggling will have to fight that much harder to get services for after their kids fall into diagnostic limbo (these are the 31% who will lose services). These changes will make it look like autism is decreasing but that is pseudo and smacks of a cover up. This is not benefiting our kids in anyway.

  2. Jon K. Evans says:

    Dear autismparent: I am wondering if us adults that are diagnosed with Autism or its related disorders, such as Asperger’s will be benefitted any better.

  3. Thomas C. Wood says:

    The DSM-V is pretty much “flawed”, and the DSM-IV is really more in line with “reality”, when it comes to the diagnostic criteria for Autism Spectrum Disorder, which is a Developmental Disability, not a Psychiatric Illness. As an Autistic with Cerebral Palsy who is classified as “high functioning”, under the DSM-V, I would not be classified as Autistic, even though I have many of the symptoms as listed in the older DSM-IV.

    What gets classified as a disorder in the DSM-V, is as much about the “politics” of treatment/non-treatment of Mental Illnesses and Developmental Disabilities, as anything else, mainly the “actual” objective clinical research into Mental Illnesses and Developmental Disabilities.

    Tom Wood
    “Woody”
    Disabled Self Advocate,
    Salem, New Hampshire

  4. Debra says:

    Unfortunately, there’s no union for children. When the teachers union raises the roof because of all the un diagnosed ASD children with no services in general ed classes, that’s when things will change. The school won’t even be able to call the police on these kids anymore because the Attorney General is cracking down on school districts. They are making school administrators deal with behavior problems.
    Clearly, this DSM V was written to deny to diagnosis to deny services, which in the long run creates more people living in poverty.

  5. Carol says:

    As a retired special education teacher, the number of children I saw on the autism spectrum grew each year. Since we don’t know why this is happening, I can only assume that this number will continue to grow.
    When I went back into teaching in 1999, the ratio was every 1 in 150 children had a diagnosis of ASD. By the time I left the ratio was 1 in 88. Thus, I suspect and can only surmise from the change made in the DSM5 that economics has dictated these changes. There is apparently not enough money to pay for educating these children. So what happens to them? They will have to be educated in the regular education setting, which is not appropriate for most children on the spectrum simply because many regular education teachers do not have the skills, background, or understanding of what these children need. Since anxiety is such a big part of this diagnosis, I do not want to imagine how they will survive without the special services they so badly need. Without social skills being taught directly, how will they survive now and especially in the future? How will our society handle this situation? Simply because the criteria is changed, making it harder to qualify children, does not mean that these children are either suddenly not autistic or they have just gone away! What a foolish and horrendous situation has been created by the changes made in the new DSM!

  6. Sharon says:

    Here’s another twist to this issue..my son went for a follow-up appointment for his ASD & other reasons with the diagnostic facility that originally made his diagnosis. They just wanted to “check” that that he would meet the criteria under the DSM-V that he met under DSM-IV. I was “assured” that his original diagnosis was grandfathered in. My son, who is a teenager, was asked 5 questions, which to be honest I don’t recall. However, 2 of them he answered one way and I contradicted the answer by providing more detail–my son was responding the way he thought they wanted him to not correctly. Needless to say, that could have had an impact because on his office review papers it stated, “fits criteria for ASD under DSM-V” on them! I shudder to think how many other kids might end up in this situation and thereby lose services based on a couple questions as opposed to an actual test. It really could happen–nearly did to my son.

  7. Barb Allen says:

    My son has been diagnosed PDD-NOS for decades. The diagnosis was not met easily. It occurred through many hours of tests, studies and direct observations. With the deinstitutionalization movement and changes in diagnoses, one is left to wonder if those like my son may lose all their eligible services and end up on the streets when their families are no longer able to protect them!

  8. New Horizon School says:

    Fewer children diagnosed will lead to fewer children receiving intervention.

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