Like many parents with a child diagnosed on the autistic spectrum, I’ve been following the controversy over the proposed revisions for the new Diagnostic and Statistical Manual of Mental Disorders (DSM) 5. Under the proposed new revisions, the categories of autism, PDD-NOS, and Asperger’s syndrome would all be collapsed into the label “Autism Spectrum Disorder.” Criteria for this new diagnosis, which are much more stringent than those used in the previous DSM IV, are causing the autism world to buzz with concern that many higher functioning individuals could “lose” their diagnoses. Dr. Fred Volkmar of the Yale Child Study Center, who had been a member of the panel involved in the rewriting of the DSM before his resignation, recently reported his results of a study in which he claimed that up to 45% of individuals on the higher ends of the spectrum would no longer be diagnosed with a spectrum disorder. Somewhat speciously, Dr. Volkmar in a New York Times article heralded the “end of the autism epidemic.”
Specifically, Dr. Volkmar and colleagues examined the case records of 1000 children diagnosed with autism in 1993, identified 372 of the highest functioning children, and then applied the proposed DSM 5 criteria to them. Of these children, about a quarter of those who had been diagnosed with autism, about three quarters who had been diagnosed with Asperger’s, and 85% of those diagnosed with PDD-NOS would not be diagnosed with an autism spectrum disorder under the proposed new criteria. But members of the American Psychiatric Association (APA) who are involved in the DSM diagnostic changes are crying, “Not so fast” to Dr. Volkmar’s report, which is scheduled to be published this spring. Dr. Volkmar’s critics, including Dr. Catherine Lord who serves on the DSM panel, are saying that the data are inadequate to re-diagnose the 1993 cohort using the new criteria. The study is simply not valid.
In an effort to reassure parents, APA members are stating that individuals who were appropriately diagnosed under the old criteria would remain on the spectrum. APA members also argue that based on their own field trials of the proposed criteria, large numbers of patients with Asperger’s syndrome or PDD-NOS will not have “the bottom dropped out from under them.” In fact, one field trial showed a 1% rise in diagnosis rates under the new criteria; a second field trial showed a drop in diagnoses of only 4 or 5% using the new criteria. Of course, there are other studies demonstrating that the new criteria are too stringent, but only a few small changes in the criteria would make the diagnoses more inclusive.
However, the efforts to calm the fears of individuals on the spectrum and their families by members of the APA were undermined by an op ed piece in the New York Times that discussed the purported over-diagnosis of Asperger’s and other disorders. In this piece, Dr. Paul Steinberg states that many individuals with “quirky absorptions” are being diagnosed with Asperger’s syndrome, to their detriment, when in fact they have a “social disability.” Along this same line of thought, Dr. Lord argues that “anybody in the world could qualify for Asperger’s or PDD-NOS” if the DSM IV criteria are taken too literally.
As parents, we were somewhat shocked when our son was diagnosed with Asperger’s syndrome in first grade; he didn’t seem “autistic” to us. But we were told that with better diagnosis and understanding of the range of severity of an autistic diagnosis, more and more kids like our son were being diagnosed with autistic spectrum disorders. But now, parents are being told that kids have been over-diagnosed, and the criteria for diagnosis need tightening. Frankly, I smiled when I read about the Volkmar study in the original Times article. Why? Because my son would probably “lose the diagnosis” under the new guidelines. And what parent wants his or her child to have a developmental disability?
But the whole question of labels begs the question of why exactly is my son doing so well? He is doing so well because of all the help and support he has had. My son has had years and years of speech, occupational, feeding, social skills, and psychological therapy. He’s had academic tutoring and organizational coaches. All of these services have been provided both through the schools and privately, sometimes paid for by insurance, sometimes not. And did the schools extend themselves to provide these services? Did the insurance companies provide him with blank checks? Of course not. They’re bureaucratic institutions and there were years we had to go toe to toe with one or both to get the services our son so desperately needed and clearly benefited from. I don’t know if my son is “truly” autistic, but I know that he needed help. In a nutshell, the Aperger’s diagnosis gave him and a label and something for us to hang our hat on. That label made a difference.
Dr. Harold Koplewicz, the director of the Child Mind Institute in New York, stated “the fact that a diagnosis can become more rigorous and more specific doesn’t mean that kids who do not meet the diagnosis still don’t have another disorder that also still will require intervention.” With respect, Dr. Koplewicz, good luck to families getting insurance coverage or special education services for that diagnosis. I find it ironic that some of the practitioners who are advocating for the proposed DSM changes are suggesting that family members lobby Congress to demand insurance coverage for their loved ones under the Affordable Health Care Act, which should be finalized in 2014. By their logic, the cause for concern is not in the redefined criteria, or with the practitioners who are or who are not diagnosing autistic spectrum disorders, but with the insurance carriers, who may justify cutting costs because of the lack of a psychiatric diagnosis with the new criteria. According to these practitioners, families need to demand appropriate coverage and not allow this reduction in services to happen. Conversely, disability rights groups are urging parents to begin their advocacy at the source; namely, the American Psychiatric Association, and protest the revisions of the DSM. To this end, online petitions are already being circulated.
As a parent I will trust that the motives of the APA in modifying the DSM 5 are good and well-intentioned. I will also trust that the opponents of the new criteria are also well-meaning. But clearly there is doubt as to which set of “dueling studies’ is accurate. Given that as many as 3 million adults and children in the United States are diagnosed with autism or a related disorder (1% of 300 million), I agree with the Bloomberg editorial which argues that it is “premature” for the APA to revise the criteria until the consequences of these changes are known. Families of individuals on the autistic spectrum have fought long and hard to obtain educational, medical, and social service benefits for their loved ones. Let’s not jeopardize these safety nets until we are clear on the implications of these proposed revisions.