As Rates Of Autism Spectrum Disorder Rise, Will Access To Intervention Decline?

This week you all heard about the recent CDC report on the rising rate of autism spectrum disorders (ASD) (click here if you didn’t read the synopsis on Parents News Now). And you have had a chance to hear experts answer a number of important questions via To The Max (click here if you didn’t read it yet). What I’d like to offer is a consideration of the CDC report in light of the current debate going on about DSM-5, the new version of the diagnostic manual to be used by the American Psychiatric Association.¬†

If you recall, not so long ago there were troubling suggestions that the proposed revisions to diagnostic criteria could result in a substantial number of youth no longer meeting the definition of ASD. This issue is far from settled, and the new CDC report acknowledges that the estimated rate of ASD could change (meaning it may decline) once new diagnostic criteria are in place. But there is a more troubling concern. As it was explained to me by Dr. Gil Tippy, the real issue comes down to this: the DSM-5 approach will “lump” all the ASD subtypes into one clinical diagnosis of ASD, but then apply severity criteria to each individual. This is the slippery slope, because while the rate of ASD may not be affected, a substantial number of ¬†youth may be rated clinically as having only “mild” impairment and thus potentially lose insurance coverage for services that their kids desperately need. Keep in mind this is, in a sense, simply a consequence of the language of the proposed DSM-5. If the various subtypes of ASD were “split” into separate diagnoses rather than “lumped” these severity criteria would not be necessary.

There is no perfect formula here. Diagnostic criteria are always revised in light of current understanding of both the causes of a disorder and how it is expressed clinically. I’ve personally witnessed drastic changes in the estimates of ASD from the early 1980s until now: when I was in college, the rate was 4 in 10,000 – now it’s 1 in 88. Much of this recognition has come from refining the diagnostic criteria and developing standardized methods for diagnosis that can be applied reliably by clinicians. But we all have to wary of the paradox that may emerge: just when we acknowledge the extent of the ASD epidemic, we may also be putting into place a diagnostic system that will decrease access to the interventions that are crucial for improving many kids’ lives. And it’s well established that these interventions need to start as early as possible and persist as long as possible to give kids with ASD the best possible developmental outcomes. Perhaps it’s time that science and practice be given equal consideration in diagnostic systems, and we all mobilize to find ways to be sure that we can, as a society, make services available and accessible for all youth who need it.

Image of question mark via Shutterstock.com

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