A growing number of autism families around the world are worried that proposed changes to the definition of autism will make it harder for their children to obtain health, educational and social services.
The criteria used to define autism are due to be tightened to exclude many of those who are presently diagnosed with what are considered to be milder forms of the condition, such as Asperger syndrome or Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).
One study has estimated that three in every four people who have already been given a diagnosis of Asperger syndrome or PDD-NOS would no longer fulfill the criteria for autism.
Concerns are growing within the autism community that the changes may force many families to source education and health services themselves and meet the associated costs.
Parents are worried that the revisions, which would take effect next year, may result in many individuals being unable to access services that could improve their ability to socialize, learn and ultimately live independently.
The changes are proposed by a panel of experts appointed by the American Psychiatric Association to revise the Diagnostic and Statistical Manual of Mental Disorders (DSM).
The DSM is revised periodically, and the next edition, known as DSM 5, will be the first point of reference for physicians in the USA when they diagnose autism. Any changes to this influential manual are expected to be taken up by practitioners across the world.
The proposed changes are being tested in real-life clinical settings ahead of their final release in the finished manual in May 2013.
Gillian Loughran, editor of Autism Eye, said the new criteria could have far-reaching implications for families: “The exclusion of people who don’t meet criteria in the new definition of autism is being seen within the autism community as a way for governments to curtail the sky-rocketing rate of reported cases of the condition worldwide, and with it the need for services and benefits.” Currently, autism cases are reported to be running at around one in 100 children.
She added: “The proposed changes will reduce the number of cases being diagnosed and diminish the sense of urgency needed to find out why so many children are developing autism, the effects of which can be very disabling.
“Urgent research is needed into the true causes of autism. No change in criteria in diagnosing the condition is going to fix that.”
Published: 22 January 2012
