Autism: "There's nothing beautiful about it"

When Arthur Fleischmann and his wife, Tammy Starr, brought home their twin girls, Carly and Taryn, they knew something was different about Carly. By two, she’d been diagnosed with autism and didn’t utter a word. Yet, in the years since, they've watched in awe as Carly has become a leading advocate for people with autism, made friends with Ellen DeGeneres and aced her classes at a mainstream high school.

This year, Arthur—who owns Toronto ad agency John St.—released Carly’s Voice, a book he co-authored with his 17-year-old daughter. Here he talks about being the parent of an exceptional child.

When did you start to notice that Carly was different from her twin sister, Taryn? Probably by three or four months. She cried all the time. And she had a slightly different look than Taryn. By six or eight months or a year, as Taryn started passing through the traditional milestones, it made the comparison even more extreme.

What was it like in those early days? It’s hazy. She’d sleep maybe three hours a night. She was in constant motion. Just picture the most hyperactive kid doing completely non-productive activity—jumping, running, banging, pulling things out of cupboards, overflowing tubs. It was constant chaos. We didn’t stop to think a ton about what the future was going to look like, because her official diagnosis at that point was autism and a cognitive delay, and we took that pretty literally to mean a delay—that eventually she’d catch up.

What were some of the other challenges? Financially, it’s brutal. I’m very fortunate in my career, but we spend so much money on therapy for Carly. We have to hire a lot of staff. We get some financial help from the government, but it’s not enough. It’s also physically exhausting. The flipside is that Carly has evolved into such a cool kid that spending time with her is much more rewarding. So I’ve gone from being a caregiver to being a parent and friend, which is something I never would have dreamed of 10 years ago.

How important is humour? It’s critical. It’s our non-medicinal anti-depressant. With humour, you can say things that are inappropriate, because everyone knows it’s a joke, and it allows you to vent.

What advice would you give other parents? As hard as it sounds, never take no. What you want to do often is to take advice at face value and move on, because you’re just so tired of fighting. But if we had listened to the doctors, we probably would have moved Carly into group home. And we would have had a patient, not a daughter.

You can’t be too hard on yourself. You will lose patience. You will scream. You will throw things. You will say things to your kid you’re not proud of. It’s gonna happen. And these people who say, “I welcome autism, it’s a beautiful thing”? There’s nothing beautiful about it. Carly would rather not have autism. She’d sure as hell like to go on dates and speak and not have these impulse and sensory processing issues.

What do you want for Carly’s future? I want her to be able to have a really productive and rewarding life, and I want other people to be in it—not just her therapists and her parents. I’m dancing around the word independence, because I know she’ll never be fully independent, but that doesn’t mean she can’t have a really rich life.

And what about your future? I want to continue working, because I love my job. Maybe I’ll write more and travel some more. Maybe I’ll spend time with existing friends and make new ones, because one of the costs of autism is that it can be quite isolating. I’d like to have some of things at 50 that my friends had at 30. So I guess, in fact, I’m the one who’s delayed.