Anne Gingras wears about as many hats as you can wear when it comes to autism. She is the mother of a 19-year-old son with high-functioning autism. She is a special education teacher who works with young autistic people at French Catholic school. She blogs about autism at myaspiefiles.com. And last year, she was diagnosed with Asperger's Syndrome herself.
We asked her to pick her top issue in each of these spheres of life. What does she most want readers to know? Her answers have been edited and condensed.
As a mother: huge service gaps ignore older children
My son is 19 now, and when we got him diagnosed he was 4. The services seemed to be (geared) towards younger children. And as they grow older – high school years, college years, adult years – the services just disappear. That’s really, really scary, because there’s no support out there. Community living associations do give help, but they need to be within a certain IQ range. He’s so high-functioning, he doesn’t qualify for that. Yet he doesn’t fall anywhere anymore. So that’s really scary.
As a special-ed teacher: Seeming "normal" doesn't mean kids don't need help
I see my coworkesr struggling: sometimes they don’t see the autism because the kids look fine. They don’t understand that it’s something that’s ongoing, so you have to almost convince them . . . we need acceptance, not convincing. Teachers I find, especially in high school, they seem to think that (the kids are) in high school, so they don’t need the special help anymore and the ongoing support. So that’s really difficult. It’s almost like they see the kids manipulating the system, when they’re not.
As a blogger: being different is okay
I just started writing my own thoughts about how it is to be different, and how I see the world -- because we don’t see things exactly the same way, or in a typical way . . . Basically, (the goal is) acceptance. I’m different and you’re different. Let’s say if I go to your house, and I need to shut the lights because it’s too bright, doesn’t mean that I’m weird. Just like if you come to my house and the TV is too loud and you turn it down, it’s okay. It’s okay to talk about what makes us special and what makes us different. It’s not an excuse, it’s an explanation for our behaviours.
As an adult woman: that girls are being missed.
I was diagnosed last year, in 2011. I was 41...in the school board where I work, we’re starting to diagnose little girls even sooner. Because the word is getting out there. And I think that’s really important, because they come across as being shy and being studious and being extremely intelligent, and that’s okay. Meanwhile, they’re on the spectrum and we’re not addressing their other needs. I see them growing up, and I don’t want them facing the same thing that I did.
The Sunday Star features a story on mothers who are diagnosed with autism in middle age, and why girls are diagnosed less often than boys.