An Indigenous experience of autism
Grant Bruno with wife Margaux, son Anders and daughter Evelyn.
By Louise Kinross
When Grant Bruno’s son Anders was diagnosed with autism, the boy had to leave his Samson Cree Nation reserve in Maskwacîs, Alberta, where he lived with his mother, to get the services he needed in Edmonton.
“It was a tough decision,” says Grant, a PhD candidate in medical sciences at the University of Alberta. “Reserves are under federal jurisdiction, so the province won’t come in and provide the supports they need. In Edmonton, Anders was able to access occupational and speech and language therapy, and we also had better access to respite and classroom supports. A child should be with their mother, but I knew that getting those services was key for him to be able to live a good quality of life. I love having him here with me, but it means he has to go between here and the reserve on weekends.”
It was after Anders was diagnosed that Grant decided to study autism in First Nations communities in Canada. He found an immense gap in existing literature.
In this scoping review, published last year in the Journal of Autism and Developmental Disorders, Grant identified only two high quality studies on autism and Indigenous people in Canada.
We don’t know how many autistic children, or children with other disabilities, live on reserve, Grant says, because Canada doesn’t track them on national disability surveys.
“It doesn’t shock me whatsoever,” he says. “I feel that a lot of what the federal government does is intentional. Someone made that decision to not include numbers on reserves. If we don’t have the numbers to back up what we need, that gets used against us for funding supports and services.”
In a recent talk at Holland Bloorview, Grant contrasted the medical model’s view of disability as a deficit with an Indigenous perspective. “In my elder study, which was one of three studies I did for my PhD, one of the elders talks about how children with disability are sacred children, and we need to learn from them. We also need to be able to support them in any ways that they need.”
In traditional Indigenous culture “you don’t make fun of people with disabilities,” Grant says. “You never do that. You don’t bully or tease or stare. It’s a sign of disrespect, and you’re disrespecting yourself when you do it. That’s because we believe the creator made that child or person the way they are supposed to be. There are no mistakes. In our worldview—going back to being taught by people with disabilities, and supporting them in any way—there’s no direct word for disability or autism. We have words that kind of fit. But there’s no direct translation, because it’s not something we have focused on. We’re about building connections. When you label people, that’s divisive. That pulls things apart.”
Grant is taking an Indigenous-led approach to his research. “I find Western research is very extractive,” he says. “It positions the researcher and the university as the ones who should benefit from the research.”
In contrast, Grant’s studies prioritize relationships. “There’s a Cree concept we use in the community called wahkôtowin, which is about how the universe is defined by relationships,” he says. “It allows you to acknowledge, honour and maintain all of the relationships you have. My research is about learning from, and understanding, families. I have some expertise, but the families are the experts.” From the beginning, Grant has worked with an advisory group of Indigenous parents of autistic children and autistic people to identify needs and co-design the research.
Grant interviewed 14 parents from Maskwacîs and Six Nations Grand River reserves to understand their experiences parenting autistic children. “The main challenge they faced goes back to the jurisdictional issues and discrimination they face trying to access services in community, and often having to leave the community like my son,” Grant says.
To start, families have to leave the reserve to get an autism assessment. “You might as well be leaving the country,” Grant says.
Once they have the diagnosis, there isn’t any follow-up to connect them to services. “The caregivers talked about wanting occupational and speech therapy and some respite, so that they could go grocery shopping or do things without their children,” Grant says. “One of the policies in Alberta is that you can’t have family members do respite. If you’ve ever been to a First Nations community, you know that everyone is related to a lot of different people, and not only that, but your children will feel more comfortable with someone they know.”
Parents don’t have support in applying for Alberta’s Family Support for Children with Disabilities, which is funding for a package of services.
“You basically go into a negotiation with a government worker,” Grant says. “But the last time I checked, there was nothing on the website that showed you what services you can negotiate for, and you have to have documentation to make a case.”
Even with funding, “few service providers will come out to the reserve,” Grant says. When they do come, therapists don’t take time to build a relationship with the child and family. “They come in as the experts and get straight to the goals and objectives and checking things off their lists.”
Jordan’s Principle was supposed to fix the inequity of services available on and off reserves in Canada. It was named in honour of Jordan River Anderson, a Cree child from Norway House Cree Nation in Manitoba. Jordan was born with complex medical needs and hospitalized. At age two he was ready to be released home, but Canada and Manitoba argued over who would pay for the in-home services and equipment he needed. Jordan never left hospital and died there at age five.
Children up to the age of 19 who live on- and off-reserve are eligible for Jordan’s Principle, and services are based on their unique needs, not what the province or territory usually provides. These services are not benefits, but rights under the orders of the Canadian Human Rights Tribunal.
“Right now there are wait lists for Jordan’s Principle nationally and provincially, and it’s overwhelmed,” Grant says.
Grant is always looked for ways to give back to the community. For example, he set up a regular autism support group. One night they rented a theatre so that families could enjoy a relaxed movie while the children were able to move around freely. Grant also created a sensory teepee for kids that is used at events.
Many families of disabled children on reserve are in survival mode, Grant says, dealing with food insecurity, boil-water advisories and housing problems. “They end up just giving up, unfortunately,” Grant says.
“What needs to happen is we need to start embedding clinical services in the community and hiring occupational and speech therapists who work directly in the community and understand it.”
Learn more about Grant Bruno and his son Anders in this film The Gift of Being Different.
Like this story? Sign up for our monthly BLOOM e-letter, follow @LouiseKinross on Twitter, or watch our A Family Like Mine video series.
