Autism study aims to help Indigenous families procure services

By Diane Luckow

SFU psychology professor Grace Iarocci, who has devoted her career to studying Autism Spectrum Disorder (ASD), is now researching B.C. Aboriginal families’ experiences and challenges in diagnosing this disorder in their children.

She has partnered with Romona Baxter of the Nzen’man’ Child and Family Development Centre in Lytton, B.C. on a two-year research study.

Iarocci says the study’s goal is to ensure that Aboriginal children who have early developmental delays are being identified early enough to take advantage of government funding programs. Children diagnosed with ASD between birth and six years qualify for $22,000/year from the B.C. Ministry of Children and Family Development (MCFD). But Iarocci says, but this funding drops to just $6,000/year when children turn six years old.

While rates of ASD among Aboriginal children in Canada are unknown, Iarocci says data from the U.S. and Australia suggest the disorder “may be underdiagnosed among Aboriginal populations.” However, the MCFD data indicate that ASD is as prevalent among Aboriginal children as it is among non-Aboriginal children in B.C.

Over the past year, study members have hosted knowledge-gathering events in the Lytton and Merritt areas for the Nlaka’pamux Nation’s 16 communities. During these dialogues, they have encouraged families and service providers to share their experiences, and perceived gaps and needs, and to help identify improvements.

The researchers also held training workshops with professionals at the N’zenman child development centre to determine whether current, mainstream approaches for early intervention are suitable, or whether they should be culturally adapted for Aboriginal communities.

Iarocci knows that many Aboriginal families are hesitant for their children to be diagnosed, and that it can also be difficult to get a diagnosis when a qualified professional only visits these communities once every six months.

She hopes her study will make a difference.

“We’ll analyze the data together with Romona Baxter (co-lead), and Rona Sterling-Collins (community lead). Romona has an MA in social work and Rona is the parent of a child with ASD,” says Iarocci. “Their viewpoints will be invaluable, as we want to ensure the themes we’re pulling from our data make sense, and that the conclusions make sense for the communities.”

She adds, “We’ll find solutions that work for each community, and that are sustainable, because for solutions to work there has to be an infrastructure and ongoing support and resources.”

The study has been funded with a 2018 Convening & Collaborating (C²) award from the Michael Smith Foundation for Health Research, and with the Social Sciences and Humanities Research Council’s Engage grants.