When the criteria for diagnosing autism were changed last year, concerns were raised that people already diagnosed might be re-evaluated and end up losing access to treatments and services.
The American Psychiatric Association (APA), which publishes the diagnostic guidelines, recommends that children who are receiving appropriate treatment as the result of the old criteria should not be required to undergo a re-examination with the new criteria by insurance companies.
But a small survey revealed to New Scientist suggests that not everyone is following the party line.
In May, the APA published the DSM-5, the latest edition of what has come to be known as psychiatry's diagnostic bible. One controversial change was to the criteria used to diagnose different kinds of autism, which are now combined under the umbrella term of "Autism Spectrum Disorder" (ASD).
Under the previous criteria of DSM-4, a person would be diagnosed with ASD by exhibiting at least six of 12 behaviours, which include problems with communication, interaction and repetition. Now, 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 in criteria was affecting people, Autism Speaks, a US science and advocacy organisation, asked users of its website to complete an online survey about their experiences. "We wanted to ensure that people are still maintaining access to the services they need," says Michael Rosanoff, Autism Speaks' associate director for public health research and scientific review.
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, Rosanoff 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 UK National Health Service says that changes to the DSM-5 will have a limited impact on mental health care in the UK, as psychiatrists tend to diagnose mental health disorders using the World Health Organization's International Classification of Diseases rather than the DSM. Those who are treated privately are also unlikely to be affected as, according to the UK health insurers approached by New Scientist, they don't tend to cover the treatment or assessment of autism.
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 approached were available for comment.
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Autism diagnosis change 'results in loss of treatment'