December 22nd, 2021
Langley's Suzanne Perreault is a self-advocate, advocate, counsellor, and parent of 3 autistic children.
She talks to us about her start in advocacy, what school was like for her 3 autistic children, and her advice to parents just starting out.
Tell us about your background in inclusive education and working with families who have children with diverse needs
Suzanne: I'm a self-identified autistic and have 3 autistic kiddos who're young adults. That’s where the conversation starts.
Having lived in Alberta, Manitoba, and BC, I saw that across the country a lack of support and understanding about the autistic community was a huge issue.
We couldn’t get access to assistance and I felt existing education programs were overlooking autistic children. There was little recognition of the autistic community, and moving to Langley was a deliberate choice because of the higher quality of schools in the area.
Then following some tough times during a separation, I started counselling school. I began writing about inclusion, doing presentations, and even gave a TED Talk on it, and that's what really motivated me to speak out more.
What were the biggest issues your kids faced throughout their education?
Suzanne: The biggest problem's been the lack of trained supports and the consistency in quality among them. There aren't enough education assistants who understand an autism diagnosis and how to support students through the particular experiences they might face in the classroom.
There's also a lack of sound policy and procedures that use the proper language, there's a lack of funding, and there's a lack of representation in curriculum; we’re not seen or found in curriculum, which contributes to misunderstanding.
Suzanne giving a TED Talk
Parents get siloed as a byproduct of all this. They can go on social media and find community online, but when they go into their child's school they're going in alone.
There's an incredible amount of isolation, and one of the results is a feeling of shame when we need to be establishing community instead.
Parents being isolated also prevents bonds forming between their kids.
For parents who have an autistic child about to enter the education system, what are the main pieces of advice you'd give them?
Suzanne: Be gracious with yourself and your expectations. Give yourself space to not be okay with something, to feel vulnerable and understand that it's normal. Give yourself space to not live up to expectations of the system, because that system wasn’t designed for kids with autism.
Follow your children's learning and emotional needs rather than letting the system guide you. Be okay with your child’s pace of learning. And capture their hearts first, because then their minds will catch up.
Follow your children's learning and emotional needs rather than letting the system guide you
And don’t wait for the school to approach you. Be proactive and provide them plenty of info about your child, who they are, what their strengths and limits are, and which supports work. Frontload their school.
Do you have a view on the recent changes to the provincial autism funding program?
Suzanne: I'm sad about it.
There was a lack of meaningful consultation, and a lack of transparency and representation. All impacted communities need to be consulted, because when they aren't it moves us away from understanding.
Completely discarding the autism funding program is foolishness.
Anything to add?
Suzanne: One more thing I need to stress is that selfcare's so important. You need to care for yourself so you can keep caring for your family.
There are going to be impacts which rock you, and that's when selfcare becomes really critical, even if it's just taking a shower so you get 5 minutes alone.
That’s also why community is important; so you have people there for you when you need it most.
Spencer van Vloten is the editor of BC Disability. To get in touch, send an email to firstname.lastname@example.org!