Definition of autism about to change

Conor Doherty is turning 16 in a few weeks, but there won't be a party with friends to celebrate, as with most teens his age, and getting a driver's licence simply will be out of the question.

The Fredericton youth is autistic and, since his diagnosis at age two, has required a host of special care, including assistants to help him with school work and other activities.

At Leo Hayes High School, he has a teacher assistant who instructs him in a cubicle separate from the other students so that he can focus on the material. Otherwise, he'd have difficulty attending public school.

"He doesn't have the ability to interact with people in a significant way . . . He requires 24/7 adult supervision," said his father Harold Doherty, a labour lawyer.

But now, after years of struggling to find the kind of help his son needs, Doherty's concerned that aide may soon be in jeopardy because of proposed changes to the definition of autism. It could make it more difficult for people who would no longer meet the criteria to access health, education and other special services that experts say improve their ability to socialize and to learn.

"As I read it, there's a good chance that people like my son will not be diagnosed (with autism) in the future," said Doherty, who was part of an effort to get early-intervention services and training for teaching assistants in the New Brunswick school system for students with autism.

An expert panel appointed by the American Psychiatric Association has proposed new criteria for the definition of autism as part of its work to revise the Diagnostic and Statistical Manual of Mental Disorders, the first major updating since 1994. The D.S.M., as it's widely known, is the standard reference used by clinicians and researchers to diagnose and classify mental-health disorders worldwide.

While the final decisions about the criteria are still months away, a preliminary analysis of the proposed changes was presented last week at a meeting of the Icelandic Medical Association. The presentation sparked a debate among medical and research professionals, as well as the public, about how the proposed diagnosis criteria would affect people.

Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the analysis of the proposal, told the New York Times that the changes would narrow the diagnosis so much that effectively, it could end the autism surge that has occurred in recent years and it would exclude many of those now diagnosed with milder forms of autism, called Asperger's disorder, or "pervasive developmental disorder not otherwise specified."

"We would nip it in the bud," he said.

But experts working on the American Psychiatric Association's panel for the new definition — a group from which Volkmar resigned — disagrees about the effects of the proposed changes, according to the Times.

Catherine Lord, a member of the committee overseeing the revisions, told the American newspaper that the goal was to ensure that autism was not used as a "fallback diagnosis" for those with an intellectual disability or aggression.

According to the American Psychiatric Association, the Neurodevelopment Work Group that has proposed the new definition has recommended a new category called autism spectrum disorder that effectively, would replace several previously separate diagnoses, including autistic disorder, Asperger's disorder, childhood disintegrative disorder and pervasive developmental disorder, not otherwise specified.

"The proposal asserts that symptoms of these four disorders represent a continuum from mild to severe, rather than a simple yes or no diagnosis to a specific disorder," states a news release from the association.

Dr. Senthil Damodharan, a Regina-based child psychiatrist who diagnoses children with autism, told the New Brunswick Telegraph-Journal that the manual is "highly influential" because it is often the first book of reference used by physicians in Canada.

He believes replacing the four categories with one disorder, autism spectrum disorder, is a positive move that's based on "current research findings" and he doesn't share the concerns raised by some other professionals, advocates and parents about the revised definition being too narrow.

"I welcome this revised criteria because it's much more consistent with what we see in our practice and it reflects the current research findings," he said.

Damodharan, a member of the Canadian Psychiatric Association, said the label is just one part of the assessment and he hopes that there will be other categories to identify children with other impairments.

"They may end up with a different label, like social communication disorder," he said. "There are different kinds of labels being proposed now. (But) a child with clear autism, I don't think it's going to matter."

He said that under the current definition for autism, a person can be diagnosed with the disorder if that person has demonstrated six or more behaviours in three areas, including social impairment, language and communication impairment and restricted interests (repetitive or limited interests.) The new definition would require that a person would have to demonstrate three deficits in social interaction and communication and at least two repetitive behaviours.

Damodharan hopes that any changes will not spark a movement to change previous diagnoses, but that it will only inform new diagnoses.

"Hopefully, the final outcome will reflect the clinical needs," he said.

But Doherty, the Fredericton father, fears that a change to the definition of autism will mean a step backward for people with the disorder.

To help illustrate his son's "serious intellectual and behavioural challenges," Doherty said the teen worked himself into a frenzy over the weekend as he continually replayed a clip on a video to the point where he bit himself in the hand.

"He has the occasional meltdown and it has a pretty serious effect," he said. "He'll hit himself on the head with his hand and do things repeatedly . . . He's inclined to engage in obsessive behaviour and we have to stop it because it gets out of control."

Doherty is anxious to see what the new definition will look like and how it might affect his son.

He believes, based on the proposed definition, that "there will be fewer people with intellectual disabilities diagnosed with autism after this."

A change will impact peoples' lives, but the extent of that impact isn't yet known, Doherty said.