Saturday, March 31, 2012

Autism, Access to Services, and Social Justice

Yesterday the CDC released a report on the prevalence of autism spectrum disorders (ASD) that demonstrates a continuing increase in ASD diagnoses. In 2008 1 child in 88 received the diagnosis, compared to 1 in 110 in 2006 and 1 in 155 in 2002.

There are three major possibilities behind the increase. They're not mutually exclusive:
  1. A pathological process such as an environmental toxin or infectious agent is behind a true increase in the incidence of ASD.
  2. The true incidence of ASD is stable, but parents and clinicians are becoming more alert to the condition and more skillful at making the diagnosis.
  3. ASD diagnosis facilitates access to services that may provide great benefit to a child. This opportunity gives instrumental value to being diagnosed with ASD.
I am not a child psychiatrist and was never involved in evaluating and treating children for ASD. But from my experience in adult psychiatry, I have some ideas about what's behind the increased frequency of ASD diagnosis.

When I first joined the Harvard Community Health Plan practice in 1975, insurance regulations allowed 20 outpatient psychiatric visits per year for the full range of psychiatric conditions. More "serious" diagnoses did not produce access to more insurance coverage. As a result, in situations of ambiguity, I and my colleagues chose "milder" diagnoses, since more "serious" diagnoses could have unintended side effects, such as not being eligible for life insurance in the future, job discrimination, and a change in self-image to see oneself as "sicker."

In the 1980s the insurance benefit changed. Those with more severe conditions had access to more insurance coverage for outpatient benefits. Given the instrumental benefit of more "serious" diagnoses (access to more treatment), it's not surprising that the prevalence of these diagnoses increased! Patients hadn't changed, but the secondary implications of how we diagnosed their disorders had.

These changes in diagnosis weren't fraudulent. The phenomena on which psychiatric diagnoses are based are part of a spectrum. There's a great deal of "gray zone." The change in secondary implications can lead to a change in perception - clinicians, patients (among adults), and concerned parents (for children) - are more attuned to looking for the data that yields a potentially "beneficial" diagnosis. And in circumstances of genuine ambiguity, clinicians, patients, and family, may choose the alternative that yields the most potential benefit for the patient.

If I'd had a child 30 years who might possibly fall into the ASD spectrum, I would have resisted the diagnosis. Stigma was very high, and hope was very low. An autism diagnosis was a form of death sentence. Better not to apply the label and to hope that the child was going through a severe "phase" that would be outgrown.

If I had an identical child now I'd ask for an ASD evaluation. Stigma has been much reduced, and improvement is seen as much more possible. And, in many communities, special educational services and special clinical interventions are now available by law.

I have no doubt that the combination of reduced stigma, increased optimism, and access to therapeutic resources, all contribute to the increased frequency of ASD diagnosis.

Unfortunately, the positive change in social justice for children who are now diagnosed with ASD causes a negative change in the educational system. Many of the new resources for ASD intervention come out of strained local school budgets. This, sadly, often pits parents and other advocates for ASD care against parents and advocates for educational services for "non-ASD" children.

Advocates for "special education" and "mainstream education" should band together. Both are advocating for key social values. Rather than fighting against each other within limited school budgets they should, ideally, join together on behalf of improved developmental opportunities for all children!

(For a New York Times article that summarizes the CDC report, see here. For a previous post about the potential for fraud in relation to autism, see here.)

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