With the upcoming proposed changes in the DSM – 5 diagnostic criteria for autism, many parents are worried that their child may no longer qualify for much-needed services. One 2009 study published in Pediatrics (1) revealed that almost 40% of children who were previously diagnosed with autism improved so much that they eventually no longer qualified for a diagnosis of autism. This finding baffled the mainstream medical community, as many autism researchers felt that autism is a permanent, lifelong diagnosis from which a child cannot recover. This has led some researchers to suspect that children who do recover probably didn’t have autism in the first place. Some will also claim that these children simply outgrew their autistic-like symptoms; they improved because they matured, not because they received intensive therapy. This group of policy-makers also feels that autism is being over-diagnosed.
It seems to me that a much more obvious explanation for these recoveries is that autism is treatable. Through years of intensive behavioral, developmental, educational, and medical therapy, children can recover. But instead of acknowledging this possibility, researchers are instead proposing to narrow the diagnosis of autism, so that only the most severe cases get diagnosed. Researchers have analyzed the new diagnostic criteria and reported their findings to the New York Times (2). According to their report, under the new criteria:
- 25% of children diagnosed with classic autism under the old criteria would not qualify for autism
- 55% of those with higher functioning autism would not qualify
- 75% of those with a diagnosis of Asperger’s would not qualify as being on the autism spectrum
- 85% of those with PDD-NOS would not qualify
The result of these new criteria is that fewer children will receive much-needed early intervention services, especially when the autism is mild and early (when early treatment is most important).
Over the past ten years, I have treated over 500 children with autism in my office. I have seen some recover fully or nearly so, I have seen many moderately improve, and I have seen some show minimal improvement. But it is my opinion that these children improve or recover due to intensive behavioral, developmental, educational, and medical therapy. They don’t just outgrow autism. Yes, a child will show some improvements on their own as they mature and get older. But I believe that aspect of their improvement is minor. Kids get better mostly through therapies, with a little help from the tincture of time.
This recovery does not change the fact that these children have or had autism to begin with. Back in the old days (where some of these policy-makers and researchers seem to still be living), when autism was rare, thought to be purely psychiatric, and no treatment options existed, the condition was considered permanent. But we now know differently. Autism is a treatable neurobiological disorder with several causative factors that involve many body systems. As we medically treat these factors, and provide years of developmental therapy, we heal the body and the mind.
If the proposed DSM – 5 criteria are approved, the definition of autism will be narrowed, and it will become more difficult to be diagnosed. This might seem like a good thing on the surface, as “autism” rates will decline sharply. But this will be misleading. In reality, it will mean that many children who really do have autism will no longer qualify for much-needed, life-changing therapies. These kids will be left behind. All children with autism, and their families, need many years of intensive multispecialty therapies. With this help, most children improve dramatically, and some recover. We cannot take that hope away.
I encourage parents and community to contact the American Psychiatric Association at 1-888-357-7924 to voice your concern.