Autism diagnosis procedure should be reformed to ease wait times and stress, society says

Lindsay Roberts is home-schooling her son, not by choice but because the five-year-old boy would be prone to hitting people, screaming and suddenly running away if he became overstimulated in a classroom without any support.

"My little guy couldn't start kindergarten because he can't access support without a diagnosis,'' Roberts said of Colton Roberts, who is showing symptoms of autism, the same neurodevelopmental disorder that affects his eight-year-old brother Travis.

So far, Colton has seen a pediatrician he was referred to by his family doctor, but is still waiting to see another specialist who could assess and diagnose his condition.

"The wait list for the pediatrician is a year and then the wait list for the actual assessment with the psychiatrist is another year to 18 months,'' Roberts said from Lake Country, B.C.

"The system doesn't offer support until the child is suspended many times or expelled. Then we can apply for support but that's really hard on a child's self-esteem,'' she said.

Many parents choose to jump the public queue by getting a private assessment, but that's not possible for those who can't afford the extra expense, Roberts said. Funding for autistic children is not available until after a diagnosis and can't be used to pay for assessments retroactively, she added.

Dr. Lonnie Zwaigenbaum, chair of the Canadian Pediatric Society's task force on autism spectrum disorders, said the increasing prevalence of the condition calls for community-based pediatricians and other primary health-care providers to be trained and supported to assess and diagnose it and provide follow-up care.

"There have been pockets of innovation in Canada, really demonstrating that it's possible to support community pediatricians to do some of that assessment work,'' Zwaigenbaum said, adding that is the case in parts of Ontario, British Columbia and, to a lesser extent, in Alberta.

"This really needs to be part of the standard of care in Canada and to not do so contributes to disparities in access and also bottlenecks in the system and likely contributes to lengthy wait lists,'' he said. The involvement of a team of health-care providers who assess autism is not always necessary and can be impractical in some areas, he added.

The society has released recommendations for a more flexible approach to diagnosis that would include community-based pediatricians, not just doctors and psychiatrists licensed to do so, using a range of interventions and resources including screening tools and a checklist for assessments involving conditions that could be associated with autism, such as dental, vision and hearing issues as well as sleep issues, anxiety and ADHD.

Functional challenges that could require physical, speech-language and educational supports are also considered, as well as questionnaires for parents and teachers and determining whether families are getting help with any social assistance needs.

New approach would help rural families

Zwaigenbaum said the approach would address concerns about lack of access in rural and remote regions, where developmental pediatricians aren't available when parents become concerned about developmental issues, including lack of response when the child's name is said, delay in language and limited eye contact.

"You may not even have a pediatrician in town, so trying to come up with a more flexible diagnostic assessment system that can be applied across the diversity of settings in Canada, I think, was really an explicit goal of this task force,'' he said, adding all children across the country should be monitored for early behavioural signs of autism spectrum disorder during doctors' visits regarding their development.

The aim is to use the recommendations as a blueprint for autism care in medical-school residency programs as well as continuing education courses, Zwaigenbaum said.

The society says autism spectrum disorder affects one in 66 Canadians aged five to 17, with boys diagnosed four times more often than girls.

Susan Watts, a family support representative for Autism Canada, said the society's position on the role of general pediatricians would allow for earlier diagnosis, reducing stress among children and parents involving a condition that can affect their daily lives in profound ways.

Watts said a patchwork of diagnostic approaches exists across the country. That means children who move from one province to another after being diagnosed may have to be rediagnosed and go through the waiting process all over again, she said.

Electra Dalamagas, a spokeswoman for Autism Montreal, said psychiatrists and psychologists in Quebec are authorized to diagnose autism spectrum disorder but access to psychologists is possible only through the private system and families must pay for assessments.