Paru le jeudi 3 avril 2008 sur The Globe and mail
Autism's crucial window
Experts are working to detect the disorder sooner, because early intervention can make all the difference
From Wednesday's Globe and Mail
April 2, 2008 at 11:15 AM EDT
It's a race against time whose outcome could have a major impact on the rest of a child's life.
For parents who suspect their child has autism, getting an early diagnosis can make a significant difference in how well he or she will respond to treatment.
But many Canadian children are missing what some autism experts say is a critical opportunity for early treatment because signs of the disorder among babies are often missed. In addition, there are long queues to see specialists. Once the disorder is diagnosed, families must enter a new lineup for publicly funded treatment.
Research shows that autistic children who are diagnosed before age 3 and who receive two years of applied behavioural analysis therapy have major developmental improvements, according to Autism Society Canada.
Natalie Duncan's son Cameron, 2 1/2, was diagnosed with autism in February and is waiting to start therapy. (J.P. Moczulski for The Globe and Mail)
"The less time waiting for the diagnosis the better," said Margaret Whelan, executive director of Toronto's Geneva Centre for Autism.
Now, autism experts are focusing on new ways to increase the number of children being diagnosed around age 2 and even younger so they can benefit from early treatment.
The Miriam Foundation, a not-for-profit group that helps autistic individuals and people with other disabilities, is about to publish national guidelines, developed with the help of leading autism experts, designed to improve early detection. The guidelines focus on the need to help pediatricians and parents recognize early signs of autism so children can be diagnosed faster.
"[We need] awareness of symptoms throughout Canada so all parents have a sense of what to look for and so that all doctors have a sense of what to look for," said Jennifer Nachshen, co-ordinator of the guidelines project.
Natalie and Stuart Duncan of Acton, Ont., know first hand the challenge of getting a quick diagnosis. Their son, Cameron, was diagnosed with autism just weeks ago, on Feb. 7. At two and a half, Cameron is one of the lucky children who has been diagnosed early. But the road getting there wasn't easy.
"We really had to push for it. We kept telling our family doctor, 'He's not talking,' " Ms. Duncan said. "[The doctor] said he really didn't think he needed to be tested - thought it was a complete waste of time."
But the Duncans knew something was different about Cameron and persisted until they were referred to a specialist.
Now, the family is finding out that it is not going to be simple to get the kind of therapy Cameron may need.
"Everything is waiting," Ms. Duncan said. "It's hard for us. We're your average middle-income family. We live in a small town and we have to drive into the city to do everything."
The problem with timely diagnoses highlights the mysterious nature of autism, a disorder that is often talked about, seems increasingly common, and yet is not very well understood. Statistics indicate that as many as one in 165 children will be diagnosed with autism or a related disorder, but researchers are still trying to figure out what causes it, who is most at risk and how it can best be treated.
Autism groups across Canada and around the world are today urging governments to adopt better screening and treatment programs as part of the first World Autism Awareness Day.
While the Duncan family's persistence paid off with a relatively quick diagnosis, many families aren't so lucky. Ms. Whelan at the Geneva Centre said it is not uncommon for families to wait two years for a diagnosis.
Nancy Loane and husband Mark Billings, of Montreal, waited nearly a year before a specialist was available to see their son, Darcy. They would have been delayed even longer, but the process was expedited because they qualified to participate in a study.
"That makes me very, very angry," Ms. Loane said. "I really feel like we lost some valuable time then."
Darcy was diagnosed as autistic when he was about three and a half. One year later, he is still on a waiting list to receive government-funded ABA treatment. In the meantime, the family is paying $475 a week for private ABA workers, language therapy, occupational therapy and other services.
The Miriam Foundation hopes the new guidelines will help improve early detection, but Dr. Nachshen said there is a long way to go before these problems are solved.
"There's really an optimal window to get them the best help that they can, and they're missing it."
What to watch for
Researchers say it is possible to recognize the signs of autism in babies before the age of 2. Here are some common signs:
No "baby talk" or babbling by 11 months.
Lack of simple gestures, such as waving, by 12 months.
No response to sounds.
Inability to say single words by 16 months.
Limited imaginative play.
Selective interest in food.