The Autism Care Network works to expand access to autism diagnosis in Canada
Not just anyone can make an autism diagnosis—healthcare providers need special training and experience to accurately diagnose autism and its related conditions. But in many parts of the world, qualified providers are hard to come by.
That’s why Dr. Lonnie Zwaigenbaum, M.D., is working with the Autism Speaks Autism Care Network and the Glenrose Rehabilitation Hospital in Edmonton, Canada to train community pediatricians and physicians on best practices in autism diagnosis. His program, ECHO Autism: Primary Care STAT (Community Pediatrician Diagnostics), offers non-specialists education on diagnosing autism in young children. Learn more in this Q&A.
Lonnie Zwaigenbaum, M.D., is a professor and the director of autism research in the division of Developmental Pediatrics in the Faculty of Medicine & Dentistry at the University of Alberta, an Autism Care Network site.
Can you tell me about ECHO Autism: Primary Care STAT? What does the training program look like?
We realized here at the Glenrose Rehabilitation Hospital in Edmonton that it was becoming increasingly difficult to keep up with the need for autism assessment. We’re fortunate to work with a wonderful group of community pediatricians who are engaged with lots of autistic kids, so we saw an opportunity for them to take on an advanced practice role in autism diagnosis. We began to work on developing the optimal training approach to support this group and came up with a three-step educational process. We’ve done the training three times now and we’re planning a fourth session.
The first step was bringing the pediatricians together and giving a conventional, focused training session where we talked about what goes into an autism assessment. We taught them an interactive assessment that would allow them to get a sense of how the child communicates, expresses themselves and plays. We also shared information about community resources, how the different supports and services are funded, and how families navigate services.
The second phase was mentored assessments in the pediatricians’ offices. We would actually sit in with them as they saw the first few kids on their own. We’d offer in-the-moment guidance, a little bit of coaching, and if any difficult questions came up during the feedback, we would help support them through that.
Third, we allowed the practitioners to do a handful of independent assessments. Then, they participated in sessions where they and the rest of the group presented the cases they had seen to the specialty team at the Glenrose Rehabilitation Hospital. Like in other ECHO Autism clinics, their colleagues would weigh in with clarifying questions and we would work together to come up with a consensus.
We were really impressed with how quickly the pediatricians learned to do a thorough assessment. Although we started with diagnosing the kids that had the most straightforward autism presentation, as they gained more experience, our participants became more comfortable seeing kids with more advanced verbal skills or social differences that were not as obvious as some other children. Once they completed five of these case presentations, they were given freedom to diagnose patients independently.
How did you adapt these trainings following the pandemic?
The training was in person for the first session, and then we switched to virtual during the pandemic for the next two sessions. As part of responding to the clinical needs during the pandemic, our group developed a virtual assessment for ASD.
We initially started with Vanderbilt’s TELE-ASD-PEDS assessment, which is designed for children under age 3, but we realized that we needed an assessment that would be suitable for older children and those with more advanced verbal skills. So, we developed something called the Assessment of Phase of Preschool Language (APPL), which is meant for kids up to age 7 or 8. We made the materials available open source, we prepared some training and we incorporated that assessment tool into our community training program.
APLES is a virtual interactive assessment that allows kids to interact and play with their own family members, use their own preferred materials and potentially do it in their own environment. It gives us a window into their best communication and social skills without the additional factor of an unfamiliar examiner or environment. That’s been one of the silver linings of the pandemic—discovering that more naturalistic, interactive assessments can work.
What impact is this program having on your local autism community?
We’ve found that this program has caused a reduction in wait time and increase in access to an autism diagnosis. The level of confidence of the clinicians tends to be quite high and has improved over time as they became more experienced with APLES and with virtual assessment more generally. In Edmonton, people are really impressed by how knowledgeable and capable community pediatricians are in autism diagnosis.
Through this process, I’ve learned the strength and expertise that community physicians bring to the table. A lot of these kids already have a connection to their pediatrician, so having that continuity and having the assessment done as part of an existing relationship has made for a positive experience for a lot of families. As the program evolves, our pediatricians are seeing more kids across a spectrum of complexity, degree of need, age and developmental development. We’re more and more convinced that our colleagues can take on a range of complexity and serve a wider segment of the community.