Autism is a word that haunts parents.
More than 36,000 children are diagnosed each year in the United States with it, a disorder involving impaired social skills and communication.
Most parents dread hearing that their child has it. Now, some parents are dreading the opposite — that their struggling child who might be or who already is considered autistic will no longer meet the clinical definition. 
In this 2011 photo, a British girl with autism plays with a doll designed to teach communication skills. (Alastair Grant - ASSOCIATED PRESS)
The fear comes as the American Psychiatric Association is considering a new definition of the collection of disorders commonly known as autism.
It would create a new category called “autism spectrum disorder” and pull under its umbrella previously separate disorders, such as Asperger’s syndrome and childhood disintegrative disorder. Supporters of the proposal say its more strict criteria would lead to a more accurate diagnosis and effective treatment.
It also may also disqualify many families from the special education and services on which they have come to rely.
After the New York Times published a front page story on the issue Friday, the APA issued a press release [pdf] noting that the final decision is still “months away.” Nonetheless, the APA did not back away from a recommendation it said reflected “the work of dozens of the nation’s top scientific and research minds and are supported by more than a decade of intensive study and analysis.”
I asked Geraldine Dawson, the chief science officer for the advocacy group Autism Speaks, to explain more about the proposed change and how it might affect families of autistic children.
Here is our edited Q&A:
How would this definition differ from the current definition?
The scientific rationale behind the changes actually are quite solid. The different distinctions among the subtypes (Autism, PDD-NOS, Asperger’s syndrome, and so on) don’t map onto different causes or different treatment approaches. For example, a very similar treatment approach would likely be used [on] someone with Asperger’s syndrome, as would be used for a child with high functioning autism. The only distinction between Asperger’s syndrome and high functioning autism in the current system has to do with how much speech the child had by 3 years of age.
It has been difficult for even expert clinicians to make reliable distinctions among the subtypes because these distinctions rely on people’s recollection of very early history. So, it does make sense to use a broad category – Autism Spectrum Disorder (ASD). In addition, for each person, the doctor will need to describe the severity of symptoms, presence and degree of intellectual and language disability, and other factors, such as presence of medical conditions and genetic etiology (e.g. fragile X).
While the new changes make sense scientifically, we need to keep in mind that this is not simply an academic exercise. We need to make sure that these changes don’t lead to people being denied the services they need and deserve.
How close is this proposed change to becoming part of the Diagnostic and Statistical Manual of Mental Disorders, the definitive guide to mental disorders? What has to happen before it becomes part of the new edition of the DSM planned for release in May of 2013?
The proposed new DSM criteria for diagnosis of ASD are very close to being finalized but still need to be fully tested in field trials...
The proposed criteria are available for public comment. The first two periods of comment took place in 2010 and 2011 and are now closed. However, a third and final period for public comment will be opened in the spring of 2012. See http://www.dsm5.org/ for more information about the criteria and process.
How might this suggested change affect families with autistic children? Could they lose out on access to special education and other resources?
We really don’t know yet how the new system will influence the ability to receive a diagnosis or services...The concern is that persons struggling with autism symptoms may not qualify for a diagnosis under the new system, especially those who are more cognitively capable. We won’t know how much of a concern this is until definitive studies are conducted...
Although it is possible that some service providers or funders could request a re-evaluation, especially if a child or adult is seeking new services, it is our hope and understanding that the current diagnosis will stand for existing services. Presently, many social service, medical, and educational programs require an assessment and diagnosis of ASD to determine eligibility for ASD-specific services, such as early intensive behavioral interventions.
Almost all the autism insurance laws that have been enacted in 29 states define autism spectrum disorders according to the most current definition of autism in the DSM; thus, all categories of autism, as long as they meet the criteria of autism spectrum disorder, will continue to be covered.
Does Autism Speaks have an opinion on the proposal?
Although the scientific rationale for the new criteria is solid, Autism Speaks is concerned and will monitor carefully whether the new criteria will exclude persons struggling with ASD symptoms who are in need of services. We are committed to ensuring that all people get the services they need, regardless of whether their condition is severe or mild.
Those who have milder symptoms (which can occur because they have responded well to early treatment or other interventions) can be helped to live productive, satisfying lives by continuing to provide some level of support (e.g. job coaching). Helping people achieve their highest potential is important not only for people with ASD and their families, but for society as a whole as this lessens the financial burden to society in the long run.
What do you think of redefining autism? Is it a good idea or will it jeopardize struggling children?
Related content:
Va. families of autistic children still waiting for coverage
MyAutismTeam.com: New social networking site for parents of autistic kids
Parenthood’ producer Jason Katims on including a character with Asperger’s Syndrome on television
His autistic son’s terrific memory helps him connect with others
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