“Horse.” It was a single word but it exploded out of the silence from the back seat of the car.
My son Gabriel has autism. I don’t let this diagnosis define him, but that’s not to say “it” doesn’t shape his (our) days. When most mothers were delighting in their child’s first words, I watched my son locked in a silent world. When he wanted a cookie, he took my hand and led me to the kitchen. When he wanted to watch a video, he led me to the TV. Behaviour was his communication: if he had a screaming meltdown at Real Canadian Superstore he wasn’t misbehaving, as the stares of judgmental passersby would accuse, he was telling me that the lights were too bright and the sounds were loud and he needed to get out of there because he was in pain.
Speech-language pathologists taught me how to work at home to teach my son the power of his words. We started with laminated picture symbols with bristly squares of velcro on the back. These were stuck to special boards placed all over the house. When he learned to rearrange the symbols to tell me things like what he wanted for dinner or when he wanted to go swimming, we moved on to speech. Using the principles of Applied Behaviour Analysis (ABA) we made demands and rewarded his attempts at imitation: “I say, you say, good things happen.” Good things took the form of Smarties and jellybeans.
Gabriel did eventually speak, but only in simple requests. He would ask me for a snack with a single word like, “cheezies.” He would ask me to reset the Internet connection on his laptop with a single word, “help.” He would say these things, but he would never tell me about his day at school. Now, at 15, Gabriel will string two or three words together like, “Bye-bye rain,” but there’s no chatter. Our car rides are silent. Except for that day when we passed the horse stables on the Island Highway.
I cherish my son just as he is, but I know that, no matter how much ABA therapy he receives, he’ll never sit in a classroom at VIU. Though it’s likely you’ll share classes with higher functioning students with autism, also known as Asperger’s Syndrome, that can function quite well without intensive supports. Since they aren’t under any obligation to disclose their diagnosis, their instructors may not even know.
Autism is a complex neurodevelopmental disorder with no known single cause, but genetics have emerged as an important part of the picture. There are therapies like ABA, with an emphasis placed on early intervention, but there is no “cure.”
Autism affects individuals in a wide variety of ways, but it’s hard to avoid making generalizations (like the generalizations I’m about to make in this very piece). Some characteristics are common, like impaired verbal and non-verbal communication and difficulty with social interactions. Others, like repetitive movements and difficulty processing sensory information, aren’t necessarily as widespread. Unusual or limited interests may be present. There are challenges but they can also turn into great strengths; when a singular focussed interest is directed properly, brilliant things can be achieved. It’s said that Albert Einstein, Mozart, and Isaac Newton were probably autistic.
Verbal communication isn’t always a problem for higher-functioning people on the spectrum. Children with Asperger’s might even speak a lot and use articulate, adult language. Sometimes they will go on at length about a single subject like trains or dinosaurs. If you’re on the other side of this conversation, your interest may wane, and while your behaviour may communicate that, they won’t necessarily “hear” your message that it is time to move on.
The uncertainty and anxiety that comes from the inability to read social cues can lead to paralyzing shyness. Sometimes that’s mistaken for aloofness. One young man I knew wasn’t sure how to join a group conversation. He would linger on the edges, coming closer to dip his foot in, then physically retreat outside of the circle where he felt safe, if alone, again. He went through high school without making a friend. This man craved social interaction, but his brain was wired differently so he didn’t know how to seek or sustain it. He had to be taught how to make connections.
Sometimes people with Asperger’s are labeled “quirky.” Fans of TV’s The Big Bang Theory speculate that Sheldon Cooper is autistic, and he has many of the characteristics, though the show’s creators deny writing him with the disorder in mind.
Autism has been getting a lot of screen time in recent years. From love stories like Adam and Mozart and the Whale, to documentaries like The Horse Boy and Autism: The Musical, depictions of the disorder have become more common in TV and films. Claire Danes won an award for her brilliant portrayal of adult autistic self-advocate Temple Grandin in the touching HBO biopic about Grandin’s life.
Whether on the higher or lower functioning end of the spectrum, or somewhere in between, the U.S. Centre for Disease Control recently estimated that 1 in 88 children (a disproportionate number of them boys) have autism spectrum disorder.
VIU’s Disability Services Office has organized information displays in the upper cafeteria for Dec. 3 in recognition of the World Health Organization’s International Day of Disabled Persons. The Autism Society of BC’s Vancouver Island Branch will be there. Stop by if you’d like more information on how to be a friend to someone with autism or visit <www.autismbc.ca> for more information.