What the Arctic Can Teach About Autism

Researchers often travel far to do their field work. For Ph.D. student Anne-Michelle Engelstad, Ed.M.’16, her “far” was very far. As in hundreds of miles north of the Arctic Circle.

While working on her Ph.D., Engelstad lived and worked in Ulukhaktok and Cambridge Bay/Ikaluktutiak, two communities on Victoria Island, one of the islands that make up the Canadian Arctic Archipelago. Based partly at the Canadian High Arctic Research Center, Engelstad wanted to understand how Ulukhaktok (in the Inuvialuit Settlement Region) sees and responds to children with developmental differences, particularly autism, compared with how Cambridge Bay/Ikaluktutiak (in Nunavut) responds.

A big part of the research included learning a philosophy called Inuglugijaittuq, which emphasizes that all children have strengths. Engelstad started by attending hunter and trapper meetings, sewing circles, and Friday night radio bingo, and then talking with Elders, caregivers, and service providers in their homes and at the research center. As her mentor, Shirley Tagalik, a writer and activist in the area once wrote, “Elders will continually point out, you cannot build an iglu by reading a book.”

For Engelstad, being part of a community while doing research was something she learned at a young age from her mother, an Arctic anthropologist now at the Smithsonian who did her own field work in Ulukhaktok and across Nunavut. On several trips, Engelstad tagged along. 

It was her mom, in fact, who first sparked the idea to focus her dissertation on communities “up north,” as Engelstad calls them.

“My mom had been talking to someone up north who mentioned that they were seeing cases of autism and didn't have a lot of services,” Engelstad says. “I started thinking, wouldn't it be cool if I could get funding to go up there and do some training with teachers or daycare providers for autism support strategies.” Before starting her doctorate, Engelstad worked at the Center for Autism at the Kennedy Krieger Institute in Baltimore, where she did this kind of training for preschool teachers.

That original dissertation focus shifted while Engelstad was taking a child development and global context class with Associate Professor Dana McCoy. “I thought, anything that I train them on is going to be very much based in the Western way of doing and seeing things. Maybe I need to first understand what their needs are and how they approach supporting children with differences." 

She reached out to Tagalik, who had co-edited a book called Inuit Qaujimajatuqangit, which translates to “that which has long been known by Inuit.” It’s a reference to traditional knowledge and ways of doing things and how the Inuit — the indigenous people from that area — have always understood children to develop and learn. Tagalik ended up telling her something interesting: We don't have autism here. 

“She didn’t mean that they don’t have kids that show what we in the United States would think of as autism,” Engelstad says. “She meant that they generally aren't getting autism diagnoses because there aren't people up north that are able to provide diagnostic evaluations, but also the measures that we have for diagnosing autism just aren't culturally or linguistically valid for the Inuit population.”

In other words, beyond access barriers, the Inuit don’t follow the medical model used in Western countries like the United States where a child with a developmental disability is “diagnosed and treated” with interventions to be “fixed.” Instead, they follow something called Inuglugijaittuq. Both a philosophy and a document created a few decades ago when power over social services was transferred from the federal government to the territories, Inuglugijaittuq emphasizes that each child has personal strengths and skills that add, not subtract. As she writes in her dissertation, “The model emphasizes that children should learn that they are an essential and valued member of their community,” and community is “best when everyone has something unique that they bring to the table.”

Comparing the two communities, Engelstad found that components of the Inuglugijaittuq philosophy around developmental disabilities were evident and embraced in both, particularly individuality and a strengths-based approach. She also learned that following the philosophy doesn’t mean that support isn’t given, or wanted, by families in both communities.

“I wouldn't advocate for not tracking developmental milestones or not catching things early and intervening,” Engelstad says, stressing that in order to make support better available to families, policy changes need to address funding issues as well as access, where a trip to the dentist from these remote areas can take days.

While doing her research, Engelstad also learned that the word “autism” isn’t commonly used or easily translated. In the Inuinnaqtun language, for example, a translation would be very long and unique to each child. So rather than, “a child with autism,” the translation would consider the perspective of each child and how they see the world, such as “the one who wakes up, looks outside, and knows the weather.” And that, she says, “is so representative of the way that I heard people talking about children as individuals.”

After graduation, Engelstad is headed to the University of North Carolina at Chapel Hill for a postdoc fellowship at the Carolina Institute of Developmental Disabilities. She says this way of really seeing a child with autism — the Inuglugijaittuq way — is ultimately more helpful for a teacher meeting a student for the first time than how a child is typically introduced in the United States: child with autism, here are their IEP goals. 

“A descriptor like ‘the one who wakes up, looks outside, and knows the weather,’” she says, “just tells you so much more about the child.”