Full transcript of Chris Varney, founder of I Can Network, on Autism: How My Unstoppable Mother Proved the Experts Wrong at TEDxMelbourne conference.
Listen to the MP3 Audio here: Autism – How My Unstoppable Mother Proved the Experts Wrong by Chris Varney at TEDxMelbourne
Chris Varney – Founder and Chief Enabling Officer at I Can Network
Four years ago I was speaking with a girl named Sarah. Sarah said to me, “Chris, I have Asperger syndrome. I guess having Asperger’s means there are things I can’t do.”
I believe we need to rethink the autism spectrum. I educate children on their rights and that says we work with children, their teachers and parents. And I’ve delivered workshops in about 140 schools. I say how autism is a spectrum of behaviors. On one hand, it can cause children to experience social difficulties, anxiety, obsessive traits and disruptive habits. But on the other hand, it provides children with incredible gifts in memory, focus, detail, and visual perception.
No two children experience this spectrum in the same way. I met children who might be non-verbal, children who were genius innovators and in a galaxy all on their own, or children like Sarah, who have a mild form of autism, commonly referred to as Asperger syndrome.
So when Sarah says to me, “Having Asperger’s means there are things I can’t do.” I thought, hang on. We don’t have this label for children to say “I CAN’T”. We have it for children to say “I CAN”.
What led to that rethink was an earlier meeting I had with a mom named Lisa. Lisa had been talking to me about her disruptive child. Imagine if, simply because your child doesn’t know how to socialize with other children, the world outcasts your son or daughter as “the weird one”. People start to whisper about you as a parent. You’re called the bad parent.
People start to ban you from children’s play-dates because your child is just too hard work. Enough eyebrows get raised about your child that you’re referred to child psychiatrists, where your child is placed in the fishbowl for seven months as all the experts stare at the strange ways that he or she moves. That was Lisa’s life.
She told me how the experts called her up and invited her to a meeting, where they sat her down, and said this, “Lisa, we’re sorry to say that everything that you find fascinating about your child is actually a problem. Everything that you thought you were doing right about your parenting, you’re actually doing wrong. Your child has high-functioning autism. That means your child can function, but there’s lot of things your child can’t do. Your child will be withdrawn, socially inept, obsessive, and have anxiety. It’s highly likely that your child will get worse, so we recommend that you involve this service in your life constantly.”
I believe we need a rethink, because Lisa is my mother. And I am that child on the autism spectrum. I am living and breathing her rethink.
What my mom did for me when I was growing up was she wielded this quiet magic around me. She worked in a background to set up a network of people, of just family and friends that always helped me say “I can” when I found myself facing an insurmountable challenge. They were the people that always worked on my gifts and helped me control my difficulties. She used my label “high-functioning autism” to alert my primary and secondary teachers of a type of learning environment that would most enable me.
And with me, every film she made me watch, every book she made me read, had this “I CAN” enforced to it. My childhood was full of stories of children that had overcome adversity. This was no dream for mom. I certainly was no picnic. I asked her recently just how bad did this get? That’s a very dangerous question to ask your mom.
And she said, “Well, Chris, there was your finger-painting.” And I thought, what was so different about my finger-painting? And she said, “Oh, Chris. You did finger painting with your own feces. And I thought, “Whoa.” I had that reaction. I was like, “How did you survive me?!”
Because the thing that she never let me do was she never let me opt out of things. I never wanted to be social as a child, and she just refused to let me use autism as an excuse. And so I would pay down on her by throwing these tantrums, and it weren’t just typical child tantrums, it would involve the whole household. One of them was so bad that simply to avoid from throwing me through the window, she picked up my school bag, and threw it across my bedroom, and it managed to go through my bedroom wall. And I shut up after that one.
Now when my family reached their exhaustion threshold, I would be sent to the refuge of my grandparents. And my grandparents had this wonderful impact on me. My grandmother researched exercises that would help me with my anxiety, and I still use those exercises today.
My grandfather knew that I would have a panic attack at the thought of playing social sports like football and cricket with other children, and so he worked on my motor skills. He taught me sports in private and even though he was permanently in a wheelchair, he used his mind and his humor to enable me to feel confident in my own skin.
At school, it would’ve been safe to call me “nine going on ninety”. My brother, Steven, he read Aladdin, and I read encyclopedias. I had this fascination with plotting the different royal families of Europe. I managed to do it from the 14th to 19th century. And I had distilled it down into this incredibly visual and detailed chart. And so when my grade 2 teacher, Miss Tey set an assignment, I matched this chart up to her because I just felt I have found a new way of seeing the last millennium. No wonder we had so many revolutions and conflicts; these families are way too connected, small community completely out of touch.
And so when I took it up to Miss Tey she said, “Oh goodness, Chris, doesn’t this chart look interesting? But darling, our assignment is on winter. Would you mind drawing what winter looks like?” And I thought, I’ve just done a PhD on the whole last millennium, and you want me to draw clouds and rain? That happened a lot to me at nine.
I would also tell stories about family trees that were broken. And so when I was ten years old, and I was watching a midday movie at my grandparents house, the film “Gone With the Wind” came on, and I couldn’t cope with the fact that the daughter of the two main characters, Bonnie, had died in that horrible horse riding accident. I thought, “What do you mean, the family tree’s come to an end? There’s no sequel? At ten, I’m going to have to continue that work.
And so I actually published a sequel to “Gone With the Wind”. I even threw in a sex scene, because that’s what my autism in visual perception could do with sex ed.
Raising me was also entertaining. I was very lucky at school to have the advantage of making some great loyal friends. At primary school, my friend, Erin could tell that my brain just absorbed every minor detail in class. And so she would help me to focus on class work, because I often wouldn’t get good marks because I’d trail off into minor things. She helped me to focus.
When I was a teenager, it was my friend, Tim, that helped me pick up social cues so that I was less vulnerable to bullying. Because, unfortunately, in Australia, 80% of secondary students with Asperger Syndrome are targeted in schoolyard bullying.