Myles Himmelreich and Katrina Griffin know a lot about fetal alcohol spectrum disorder. They are both affected by it and the two of them are leading a new program that helps young people with FASD to learn about the diagnosis and how it impacts their lives.
“I’m not the weird one in this group. I’m not the different one. I’m not the one that people are going to look at. I can actually have friends here and maybe even feel a sense of belonging,” Himmelreich said.
That feeling of belonging and understanding is what this new peer mentorship group in Surrey, B.C., is offering teens and young adults with the disorder. It’s unique because it creates a sense of community among people who share symptoms and circumstances. While the symptoms are different in each person, they can include sensitivity to overstimulation, difficulties with communicating, and differences in processing.
“You go from feeling alone to ‘Oh, I’m not the only one who’s really bothered by loud noises or smells or the feeling of my clothes.’ They think ‘Oh, I’m not that weird,’” Himmelreich said.
Listen to Himmelreich and Griffin as they share stories from the peer mentorship group.
Learning about FASD is often the first step
The program started in the summer of 2017. The 10-week-long sessions take place at the Asante Centre, an assessment, support and advocacy centre for people with complex needs.
Each week, Himmelreich and Griffin meet with two different-aged groups of kids. They teach life skills like budgeting, sensory issues and self-advocacy and discuss strategies to help them through challenges that may arise with the disorder.
“A lot of these individuals don’t know about [FASD] beforehand. A lot of people don’t, period. And so they have the misunderstanding of what FASD is. So I think that’s really key for them to learn and see it in a different light so that they can leave here going ‘Oh, it’s okay to talk about it. It’s okay to say I have that,’” said Himmelreich.
Grace is one of the teens in the mentorship program. She says working with the group has helped her.
“Before, I just thought that I sucked at focusing. But then I came to this group and I was like, ‘Wait, this is actually a bigger thing than it is. Is there any way I can fix this?’ And then [the group] gave me answers. [FASD] does affect my life, but I’m able to control that.”
It wasn’t easy at first. When Grace walked in to the group for the first time, she was nervous. By the end of the session, she walked out with a bunch of new friends.
“I think that everyone having FASD helps us understand each other better. We all have this one thing in common, but we’re all so different.”
Peer mentorship groups missing in Canada
There are very few programs like this available to young people with FASD. Audrey McFarlane, executive director of the CanFASD research network, says that there are fewer than a handful of supports like the one at the Asante Centre focusing on relationship-building and self-advocacy in Canada.
“I don’t think the rest of the country is at a place where there is that kind of support. For example, in Nova Scotia, you can’t even get a diagnosis of FASD.”
McFarlane says if you can’t get a diagnosis, you can’t get access to funding, key support workers, or any sort of programming — let alone a mentorship group. She says most communities struggle to meet the needs of people with the diagnosis, but B.C. is ahead in some ways because of the public education around the disorder.
“I would say that there is more knowledge in the Lower Mainland because they’ve been at it for a very long time trying to educate the community about FASD.”
Self-advocacy amid stigma, stereotypes and misinformation
Despite the work to educate people about FASD, there is still a lot of stigma associated with the diagnosis.
“I think one of the good things about the group is that it really helps them to become accepting of FASD, with all the stigma and shame and blame associated with it, to come to a place and learn to be okay to talk about it,” said Himmelreich. “I think is huge.”
John Aspler is a researcher at McGill University who is looking at how people with FASD feel when they encounter negative stereotypes about the disorder in the media and the public.
He says that major Canadian-English news outlets sometimes use language to describe people with the disorder that is negative, such as “mentally challenged” or “potentially life-destroying disability.”
“People with FASD strongly reject that sort of language,” said Aspler. “They responded to the study saying ‘Put us front and centre. Let us tell our own stories. Let us talk about our own experiences with everyone.’”
As experienced self-advocates, Himmelreich and Griffin are instilling confidence and self-esteem in their mentees. Griffin encourages them to be unapologetic about their diagnosis.
“One of the cool things for me is the confidence that these participants can have. They can literally stand up head held up high and be like ‘I have FASD. You don’t like it? That’s your problem. There’s the door.’ I love that.”