Most of the world’s children live in low- and middle-income countries. Yet few epidemiological studies of autism prevalence have been conducted in these countries, and little is known about how the symptoms of autism vary from culture to culture.
The limited data available suggest that outside North America and Europe, many cases of autism go unrecognized. A major barrier to diagnosis is the cost of assessments.
“There are glaring disparities globally, and even within the U.S., in terms of where the research on autism is being done, who is included in studies of autism and the diagnostic and therapeutic services available,” says Maureen Durkin, professor of population health sciences and pediatrics at the University of Wisconsin School of Medicine and Public Health.
In May, Durkin delivered a keynote address at the 2013 International Meeting for Autism Research in San Sebastián, Spain, in which she challenged the field to develop open-source, freely available methods for autism screening and diagnosis.
Her clarion call drew a standing ovation.
Researchers who attended her talk say she tapped into a broadly felt, but often only dimly articulated, sense that autism research needs to become more inclusive, and its benefits more accessible globally.
“We have an obligation to think as a field about how to make our methods available to all corners of the earth,” says John Constantino, professor of psychiatry and pediatrics at Washington University in St. Louis.
Western Psychological Services, a publishing company based in Los Angeles, owns many of the common autism screening and diagnostic instruments. These include the Social Responsiveness Scale (SRS), a widely used screening questionnaire that Constantino developed, as well as the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R), often referred to as the gold-standard tests for diagnosis of the disorder.
Each time one of these tests is administered, the publisher charges a fee, and passes a portion of the royalties on to the test’s developers.
“I don’t think there’s any other condition in medicine in which you have to pay a royalty to a publishing company in order to make the diagnosis,” says David Skuse, professor of behavioral and brain sciences at University College London. Skuse has helped develop two freely available tools, the Social and Communication Disorders Checklist (SCDC) and the developmental, dimensional and diagnostic interview (3di).
In many countries, paying royalties of even a few dollars represents a substantial hardship. Durkin and others say these costs not only limit access to diagnosis for individuals, but also forestall epidemiological studies, which require surveying thousands of individuals.
One reason researchers have traditionally turned to publishers is a lack of alternative distribution channels, Durkin says. A new online clearinghouse of information, DisabilityMeasures.org, attempts to address this issue by gathering free diagnostic tools for developmental disabilities such as autism.
Matthew Maenner, who created the site, says he saw the need for such a resource after developing the Waisman Activities of Daily Living Scale, a free quality-of-life assessment for teenagers and adults with autism.