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Parents of autistic kids fear diagnostic changes will mean reduced services

Lisa Wilson reads with her ten-year-old son Jonathan.

matthew sherwood The Globe and Mail

After raising three boys past the diaper stage, Lisa Wilson could tell that something about her fourth son's development was askew. At age 2, Jonathan didn't speak. He would bang his head against the wall, look at his fingers twiddling and avoid human contact, she says. "He was your classic definition of autism."

Jonathan began receiving intensive therapies and support for moderate to severe autism at age 3. Five years later, his diagnosis was changed to PDD-NOS (pervasive developmental disorder – not otherwise specified), a less severe form of autism.

Jonathan, now 10, "is very much in our world," Ms. Wilson says. But without early intervention, she says, "I do not think he would have made that kind of progress."

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Ms. Wilson says she is concerned that proposed changes to the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders – the go-to guide for mental-health professionals – may put higher-functioning children into a "foggier category" of individuals who need support services but no longer meet the criteria for autism, she says.

Autism is a neurobiological disorder characterized by social and communication problems as well as restricted and repetitive behaviours. Under proposed revisions to the DSM-IV, due for publication in 2013 as the DSM-5, children with social and communication problems who do not display restricted and repetitive behaviours may be given a new diagnosis of "social communication disorder."

The potential changes have parents worried, says Ms. Wilson, who works as a family facilitator at Grandview Children's Centre, a provincially funded treatment centre in the Toronto area.

Anxiety levels have been rising since The New York Times published preliminary findings from a Yale University study in late January, she says. The report suggests that 75 per cent of those previously diagnosed with a milder form of autism called Asperger syndrome – and 85 per cent of those diagnosed with PDD-NOS – would not meet the proposed criteria for autism in the DSM-5.

Although the findings from Yale are heavily disputed, she says, parents are looking for reassurance that service providers will adjust their diagnostic requirements to fit redefinitions of autism and other developmental disorders.

Ms. Wilson notes that even with "high-functioning" autism, her son Jonathan has problems with self-regulation and spends a high percentage of his school day segregated from other students.

"Just because we change the label doesn't change the needs," she says.

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Kim Seabrook of Sault Ste. Marie, Ont., says her 14-year-old daughter Hannah has "done well" after receiving interventions for PDD-NOS since age 2. But she fears her daughter may regress if support services are withdrawn based on changes to the DSM.

"My concern is that my child will no longer fit the criteria for autism," she says. "My concern is that my child will fit the criteria for the new social communication disorder. And does that qualify [for services]"

While parents consider the implications of a rough-draft document, experts question whether proposed changes to the DSM would in fact exclude high-functioning individuals from being diagnosed with autism.

"I'm not sure that 'tightening up' is necessarily what we're seeing here," says Vikram Dua, a child and adolescent neuropsychiatrist in Vancouver. He describes the revised criteria as "an attempt to better reflect what we know" about autism.

The proposal to replace subcategories including Asperger's and PDD-NOS with the umbrella term "autism spectrum disorder"would bring the DSM-5 closer to British Columbia Ministry of Health guidelines used since 2003 to assess and diagnose autism, Dr. Dua says. "I think, in some respects, it's a move in the right direction."

Katherine Moxness, a psychologist specializing in autism at the West Montreal Readaption Centre, notes that studies have shown that clinicians are unable to reliably distinguish between subcategories of autism, such as Asperger syndrome and PDD-NOS, among higher-functioning individuals.

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Grouping all forms of autism under the same label is "scientifically sound," Dr. Moxness says. "My only concern is how [the DSM-5]is going to get translated into service delivery" at the less severe end of the autism spectrum, she says.

Both Dr. Dua and Dr. Moxness say they disagree with findings that suggest proposed criteria for autism in the DSM-5 would exclude the majority of people with Asperger's and PDD-NOS.

Specialists don't rely solely on the DSM to diagnose autism, adds Dr. Dua. Instead, they use a variety of assessment tools in multiple sessions with a patient to determine whether an individual has autism or a cluster of disorders with similar traits. In clinical practice, he says, "I don't know if [the DSM-5]is going to change things too much."

But Leah Miltchin, president of the board of directors for Autism Ontario, notes that in places where diagnostic services are less available, general practitioners turn to the DSM. "I've heard of people who have just taken their child to the family doctor and the family doctor says, 'Oh yeah, he has PDD-NOS,' and kind of sends them on their way."

Ms. Miltchin says the onus will be on the medical community to be vigilant about applying the new diagnostic criteria – and on policy makers to "not just pick and choose who receives services and who doesn't."

In the meantime, she says, parents should be aware that changes to the DSM will be under review for months to come and their impact on services remains to be seen. "I think we have to not panic," she says.

DSM decoded

The DSM is short for the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders. The manual is widely consulted by Canadian physicians as well as ministries of health and education, along with the International Classification of Diseases produced by the World Health Organization.

In May 2013, the DSM-IV – last revised in 2000 – will be replaced by the DSM-5. Here are the most significant proposed changes to autism in the DSM-5:

*Autism spectrum disorder will be the only diagnosis for autism. Subcategories including Asperger syndrome and PDD-NOS (pervasive developmental disorder – not otherwise specified) will not be recognized as separate conditions.

*Social and communication impairments will no longer be considered separate categories in the diagnostic criteria.

*Individuals must exhibit at least two restricted and repetitive behaviors and interests (such as stereotyped speech, fixed interests and excessive adherence to routines) to be diagnosed with autism spectrum disorder.

*Labels such as "high functioning" and "low-functioning" will be replaced with severity levels: "requiring support," "requiring substantial support," "requiring very substantial support."

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About the Author

Adriana Barton is based in The Globe and Mail’s Vancouver bureau. Her article on growing up with counterculture parents is published in a McGraw-Hill anthology, right after an essay by Margaret Atwood. She wishes her last name didn’t start with B. More

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