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Why I'm Not Freaking Out About the New Autism Diagnostic Changes

The New York Times broke a story last week about a study showing that changes to the diagnostic criteria would exclude huge numbers of currently diagnosed people. I have an autistic son, and I’m not freaking out. Here’s why.

Currently, autism diagnosis is based on the Diagnostic and Statistic Manual of Mental Disorders, Fourth Edition, commonly known as the DSM-IV.  A fifth edition, DSM-V, is due out in 2013.  The American Psychiatric Association, which publishes the DSM, has been developing changes and updates to the manual for years. Many, many other disorders will also have changes made to their diagnostic criteria.

For autism, the proposed changes were announced in January 2011.  The gist of the changes are this:

  • The entire autism spectrum is becoming one diagnosis. There won’t be separate “labels” for Asperger Syndrome or PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified).
  • Rett Syndrome, a neurobiological disorder found almost exclusively in girls, is eliminated entirely. It’s not that Rett Syndrome doesn’t exist any more, it’s just that there is a proven genetic cause for Rett Syndrome, which has several autistic-like symptoms.
  • Speech delay is removed as a requirement for diagnosis, in favor of “persistent deficits in social communication and social interaction,” which I find more inclusive, actually.
  • Sensory processing issues are included as a possible (but not required) symptom for diagnosis.
  • The diagnosis now comes along with “Severity Levels,” which are supposed to help eliminate vague labels like “high-functioning” or “low-functioning.”  The DSM-V will assign one of three levels to each autistic person: Level 1, “Requiring very substantial support;”  Level 2, “Requiring substantial support;” or Level 3, “Requiring Support.”

Personally, I find the “Severity Levels” to be extremely subjective, and dependent on the skill and experience of the clinician making the diagnosis. But an accurate autism spectrum disorder diagnosis already depends on having a skilled and experienced clinician, so that doesn’t really affect too much.

For a much more detailed look on how the DSM-IV and DSM-V criteria stack up, please see my blog post from that time. You should probably be forewarned that for the most part, I’m a humor blogger, so I have the tendency to refer to the DSM as “The Big Book o’ Crazy.”

Now for the New York Times article that has everyone freaking out. An “expert panel” was appointed by the American Psychiatric Association to assess the impact of the proposed changes, particularly on those currently considered either “high-functioning autistic” or having Asperger Syndrome. Using clinical data from 1993, the study determined that:

  • One quarter of those diagnosed with classic autism in 1993 would not meet the revised criteria.
  • Three-quarters of those with Asperger’s Syndrome would not qualify for a diagnosis.
  • 85 percent of those diagnosed with PDD-NOS would not qualify for a diagnosis.

Okay, that’s super-freaking-scary to those of us who already do daily battle to ensure that our children are getting the services they need, not to mention the adults with these diagnoses. Far more disturbing, though is this quote from the Times article:

The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”

Sooo, just calling it something else would nip it in the bud? If we stop calling diabetes “diabetes,” would that end the the ballooning numbers of Americans being diagnosed with Type II Diabetes? Of course not. That’s insane.

The Times article continues,

Experts working for the Psychiatric Association on the manual’s new definition — a group from which Dr. Volkmar resigned early on — strongly disagree about the proposed changes’ impact. “I don’t know how they’re getting those numbers,” Catherine Lord, a member of the task force working on the diagnosis, said about Dr. Volkmar’s report.

Dr. Lord also pointed out that the study used old data, collected by doctors who were not aware of what kinds of behaviors the proposed definition requires. “It’s not that the behaviors didn’t exist, but that they weren’t even asking about them — they wouldn’t show up at all in the data,” Dr. Lord told the Times.

When I look at the actual proposed diagnostic changes, it’s clear to me that my son, who currently holds a diagnosis of Asperger’s Syndrome, will still meet the criteria. He is high-functioning enough to be in a mainstream Kindergarten class, but requires supports like speech therapy and a special education teacher. I can only hope that as he develops more coping skills, his “severity level” will lessen.  Will that ever mean he doesn’t have autism? No. He is who he is, and we love him exactly the way he is. Like most parents of autistic kids, my husband and I have no interest in “curing” him. We simply want to try to make the world less stressful for him.

While I’m not completely freaking out, I do have significant concerns about the proposed criteria. However, my biggest bone of contention with the whole thing is that I don’t believe autism belongs in the DSM at all.  The DSM is the Diagnostic and Statistical Manual of Mental Disorders. And while autism does have emotional and behavioral components, it is not a mental disorder. I’m speaking as a person with a very long history of mental illness, including severe depression and anxiety, so I’m not dissing mental disorders here.

I’m simply saying that autism is a neurobiological disorder. My son’s autism was diagnosed by a neurologist, not a psychiatrist. There is a clear genetic component in my family. Research is coming out fast and furious pointing to biomarkers for autism. Why, then, is it included in the DSM at all? Because Leo Kanner, the first physician to identify autism and label it such, was a psychiatrist. Because up until now we didn’t know about the biomarkers. Because autism manifests alongside many mental health issues such as anxiety and obsessive-compulsive type repetitive behaviors.

We know more now than we did in 1943 when Leo Kanner coined the phrase early infantile autism. We don’t know enough, but we know more.

Don’t freak out. Look at the actual proposed criteria, meet with your child’s team, and discuss your concerns.

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