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WHEN the criteria for diagnosing autism spectrum disorders were changed last May, concerns were raised that the stricter criteria would mean that some people who would benefit from treatment would miss out on a diagnosis. It seems the fears were well placed: a study has estimated that the number of diagnoses could fall by almost 20 per cent.
Another concern was that people already diagnosed might be re-evaluated and so lose access to treatments and services. Despite assurances that this wouldn't happen from the American Psychiatric Association (APA), the organisation that publishes the criteria, not everyone seems to be toeing the party line.
Under the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders, a person would be diagnosed with ASD by exhibiting at least six of 12 behaviours, which include problems with communication, interaction and repetition. Now, under the DSM-5, that same person would need to exhibit three deficits in social communication and interaction and at least two repetitive behaviours – the latter, say critics, makes the new criteria more restrictive.
To see how the change might affect the number of ASD diagnoses, Matthew Maenner at the US Centers for Disease Control and Prevention in Atlanta and colleagues analysed behavioural data from 644,000 children across the US who were 8 years old in 2006 or 2008. Of the 6577 children classified as having ASD based on the DSM-4 criteria, only 81.2 per cent also met the DSM-5 criteria (JAMA Psychiatry, doi.org/q76).
But this result is hypothetical. What people really want to know is whether there is any evidence that the diagnosis change is actually having an impact on people's lives.
It turns out there is. Autism Speaks, a US science and advocacy organisation, asked users of its website to complete an online survey about their experiences. Around a third of the 611 people that have so far replied to the survey say that they have been asked by schools or health organisations to have their diagnosis re-evaluated under DSM-5 criteria, Michael Rosanoff of Autism Speaks told New Scientist. "Some of these people also report having lost access to services and treatments," he says. Rosanoff admits this survey is small and self-selecting, but says it is enough to ring alarm bells.
One anonymous respondent said that the regional centre that funds services for her son is seeking to have him re-evaluated despite a 10-year well-established diagnosis of ASD.
The changes are most likely to be felt in the US, the country that most heavily relies on the DSM for diagnosis. None of the US health insurers New Scientistapproached were available for comment.
The APA stands by its assertion that no one already diagnosed should be re-evaluated. "We made this recommendation from a public health and practical perspective since disruptions in effective treatment would be counterproductive to kids," says Darrel Regier, vice-chair of the DSM-5 task force.
Despite this, the results of its online survey have prompted Autism Speaks to fund a bigger study with Yale University to identify the effects of DSM-5 in terms of ASD diagnoses and access to services. "We want to ensure people still receive the services they need," says Rosanoff.
This article appeared in print under the headline "People with autism already losing out after rule change"