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.
When school was over, and I lost the safety net of my routine, because people on the spectrum love their routine, my friend, Alana, helped me focus on getting uni right, on dealing with my anxiety, and looking at campaigning, volunteering and children’s advocacy as a new focus for me.
And of my teachers, it was an extraordinary woman named Christine Horvath who met me at 13 and could immediately tell that I just had this different mind, that I moved differently, and that I had a way with words and memory and creativity. And so what she did was she set up platforms for me to tell stories. And I moved from the kid that no one really knew how to take to the respected story-teller in the schoolyard. And I’ve just been following that pathway ever since.
And so when I think about this network that my mom started, I know what she saw, when those experts sat her down. When they said that I couldn’t do things, she just chose to say, “But he can.” When they said I would struggle, she chose to think of strengths. When they said that this would be ugly, she chose to say that this could also be beautiful.
And there is another way of putting her rethink. My friend and I agree that men are from Mars, women are from Venus, and autistic people are from Pluto.
We go to this next slide. My brother on the left, Steven, the boys’ boy; he’s definitely from Mars. My sister Marian in the middle, she’s from Venus. And the boy on the right, with his socks pulled up with his shirt tucked in, his top buttoned-up, and a combover without one hair out of place, he is from Pluto.
I look at it now and I’m like, “I was just ahead of my time.” I’m basically dawning the eight year old hipster. I mean, I basically paved the way. But if we actually entertain this thought for a second, Pluto in our Solar System has this fundamentally unique orbit. It moves in a different way. And it’s the same for children on the autism spectrum. Our orbit or our mind just moves differently. That doesn’t mean there are things we can’t do.
Hell, we can do most things, we can even throw in a little extra. Our mind can move like lightening on certain subjects. Language, spelling, and words were what did it for me. But our mind, our orbit, can sometimes take longer to adapt in the area of social skills. But it does adapt. I can’t tell you how confusing my literal mind found sarcasm as a kid. Let’s just say it could take a joke a long way.
And so I realized that when Sarah said to me, “I guess that having Asperger’s means that there are things I can’t do” that she is in an environment where people stare at her different orbit and point at it as a deficit. Whereas I came from an environment where my brave mother removed my disorder by creating an environment free of this stigma that would inhibit me.
Twenty years have passed since I was diagnosed. Experts no longer talk to parents like that, health innovations have come a long way, but in my work I see this stigma holding kids back all the time and it’s going to require all of us to do something about it. Because we’re all going to work with people on this spectrum. One in 88 children in the United States are diagnosed as being on the autism spectrum. And these children can bring extraordinary value to your life.
Here is Leonardo da Vinci. Author Michael Gelb has researched da Vinci’s life, looked at the way he gathered notes, his visual perception, his detail and focus, and concluded that this man was far advanced on the autism spectrum. Look at the value he gave us. The Renaissance. Now the lesson from da Vinci’s life is not that every child on the autism spectrum is going to be exactly like him. Because they can’t be. You know, it’s a very broad spectrum. The lesson is, though, that this man had a network of people around him that worked on his gifts and helped him control his difficulties. That network, his “I CAN” network, started when his father, Piero, took his son’s paintings to a painter friend named Verrocchio and said, “Look at what my son is doing!” And Verrocchio looked at these paintings and instead of pointing a finger at a different orbit, said, “Bring me into that orbit.”
Now, consider this. Do you think that if da Vinci was born today, he would be able to do now what he did then? I worry that our tendency to mock kids, to label, to hold them back, is stifling the da Vincis of today. And so this is where we can all play a role. We all have a role in a child’s “I CAN” network.
If you are a child or young person on this spectrum, hear me: never let a label limit what you’re capable of. Use this spectrum to create your own label. If you are a parent or a grandparent, know your child is special. They’re just leading a focused life. Be confident with the quiet magic you can wield to bring out their gifts. Or raise a child who is a loyal friend to one of these children.
And if you’re a teacher, create those platforms that make these children socially visible and respected in the schoolyard. And I promise you, when you find you role in a kid’s “I CAN” network, there’s nothing like the sight of watching one of these children transform their orbit from a place of frustration, failure, and shame, into a place of confidence. You watch them move from the prison of self-doubt to the freedom of self-belief.
And to my mom who’s here today: thank you for that freedom.