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Dr. Melanie Penner, scientist at Holland Bloorview's Autism Research Centre
Enhancing Access to More Timely Autism Diagnoses for Families

Researchers find that pediatricians in rural communities regularly provide diagnoses, identify strategies that can be effective for their urban counterparts: study

Autism is one of the most common disabilities among children and youth. In fact, one in 66 children and youth aged five to 17 in Canada are diagnosed each year. Research has also shown that the earlier a child receives their diagnosis, the better outcomes they have through interventions such as Holland Bloorview Kids Rehabilitation Hospital’s Social ABCs program.

In Ontario, a range of healthcare professionals can diagnose a child with autism (if the case is straightforward), from physicians and nurse practitioners to psychologists and general pediatricians.

The challenge, however, is families of children or youth suspected of having autism are waiting several months, and sometimes a year or longer to receive an official diagnosis.

To increase access to more timely autism diagnoses, a study led by Holland Bloorview, was conducted to examine the perspectives of pediatricians in rural communities regarding their perceived roles, facilitators and barriers in providing an autism diagnosis.

The study was led by Dr. Jennifer Das, who was a developmental pediatrics subspecialty resident at Holland Bloorview and worked on the research project as part of her fellowship under the guidance of Dr. Melanie Penner, a clinician scientist  and developmental pediatrician at the Bloorview Research Institute (BRI), Holland Bloorview’s research institute, and a co-author of the study. She is now a developmental pediatrician who teaches at University of Toronto’s Division of Developmental Pediatrics within the Department of Pediatrics.

“Everywhere in Ontario, we’ve facing access issues, in both urban and smaller communities,” said Dr. Penner, who is also a scientist with the Autism Research Centre at the BRI. In addition, she noted, pediatricians often refer their clients to a specialist, such as developmental pediatrician trained in ASD, to provide a diagnosis. Complicating matters is families having to travel greater distances to see these specialists and receive a diagnosis. “If we can expand our diagnostic capacity, we can see more kids and closer to their homes.”

This follows on the heels of a previous study led by Dr. Penner that looked at how pediatricians in the Greater Toronto area on their thoughts around autism diagnosis, but that didn’t give the researchers a full picture.

The research team conducted interviews between December 2016 and January 2017 with 14 pediatricians in three Ontario communities – Orillia, North Bay and Sault Ste. Marie to find out what their comfort level was in providing an autism diagnosis, strategies they used and any barriers they faced.

The team found that the pediatricians interviewed in the study regularly diagnosed ASD and that their practices were organized to help facilitate the process from pre-assessment, diagnosis and service access. They also had a strong sense of responsibility to help families within their communities, and many mentored their younger colleagues through the autism diagnostic process. In addition, having allied health professionals such as occupational therapists or speech language pathologists to participate in assessments helped pediatricians in providing a diagnosis.

Dr. Nicky Jones-Stokreef, a developmental pediatrician with a practice in Orillia and a study co-author, emphasized that it makes sense for general pediatricians to provide an autism diagnosis since they are seeing children for many other health conditions. “I think it is good practice for the general pediatricians to be comfortable with this condition because there is such a high prevalence in the community, so they’re going to see it one way or another. They need to know what autism looks like.”

At Holland Bloorview, Dr. Penner and other researchers from the Autism Research Centre have been running virtual programs, called ECHO Autism, for pediatricians and other health-care providers to build capacity and ability to screen, diagnose and manage children and youth with ASD in Ontario. There also annual ECHO boot camps hosted by the team where workshop participants learn hands-on skills in diagnosing autism through role play with parents and interactions with children.

So what can both pediatricians urban and small communities do to improve access to more timely autism diagnoses for families?

“Creating strong communities of practice, having good relationships with allied health partners, and mentoring and modelling will go a long way in providing more meaningful and timely diagnoses for our patients and their families,” says Dr. Penner.

The study, Perspectives of Canadian Rural Consultant Pediatricians on Diagnosing Autism Spectrum Disorder: A Qualitative Study, was published online this month in the Journal of Developmental & Behavioral Pediatrics. It was funded by a Holland Bloorview Centres for Leadership in Child Development.