False diagnoses inflate autism rate in India

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The rising prevalence of autism worldwide is thought to stem from growing awareness and expanding diagnostic criteria. A new study, published 13 February in Psychological Studies, suggests that rushed clinicians and a dearth of culturally appropriate screening tools may also be artificially inflating the numbers, in India and possibly elsewhere¹.

The study’s sole researcher, Srinivasan Venkatesan, looked at 154 children under the age of 8 in Mysore, Karnataka, who had been diagnosed with autism. Venkatesan observed each child, read notes from parents, teachers and clinicians about the child’s development, and performed in-depth interviews with parents and clinicians about the child’s early behaviors.

He then used several diagnostic tools, including the Autism Behavior Checklist for Disability Estimation, to determine whether the children met the criteria for autism laid out in the 10^th edition of the International Classification of Diseases (ICD-10-CM), which is similar to the Diagnostic and Statistical Manual of Mental Disorders used in the U.S.

Only 30 of the children — less than 20 percent — met the criteria for autism, Venkatesan found. A similar proportion — 23 percent — had expressive speech delays. The rest had a range of conditions, including cognitive delays, learning disabilities, conduct disorders such as attention deficit hyperactivity disorder, hearing impairment and reactive attachment disorder, in which a child fails to form a healthy bond with his parents.

One possible explanation for this discrepancy is a rushed diagnostic process. In the U.S., a multidisciplinary team that includes a pediatrician and a psychologist typically diagnoses a child with autism. By contrast, only 3 percent of the children in the study met with more than one clinician. What’s more, 38 percent received their diagnoses after less than 30 minutes with a single clinician. Another 35 percent spent less than an hour with a doctor.

Poor screening instruments may be boosting the rates even further. Doctors diagnosed nearly half of the children without directly observing the child. Others used what Venkatesan calls “foreign quickie screening tools,” some of which contain cultural references that Indian children might not understand. The Social Communication Questionnaire, for example, probes whether children copy their parents as they pretend to vacuum — an activity that many Indian children are unlikely to have seen.

Parents may be playing a role, too, by exaggerating their child’s symptoms. Some parents admitted they may have pushed for a quick diagnosis so they could “cure” their child and get back to work, says Venkatesan, professor of clinical psychology at the All India Institute of Speech and Hearing in Mysore.

Although the findings are specific to India, they may extend to other countries that lack culturally appropriate screening tools. For these countries, India may be leading by example.

Researchers there have already translated two autism screening tools — the Autism Diagnostic Observation Schedule and the Social Communication Questionnaire — into Hindi and Bengali and validated them for use India. This is a crucial step toward painting an accurate picture of autism prevalence in India and worldwide.