'Social ABCs' program aims to give autistic children their voice: researchers

Alex Munro, 6, diagnosed with Autism Spectrum Disorder, sits with his mother Jenn Potenza, at the Holland Bloorview Kids Rehabilitation Hospital in Toronto on Tuesday, August 1, 2017. THE CANADIAN PRESS/Mark Blinch

Earlier this month, Canadian economist David Card received a Nobel Prize for an essay he wrote in 1994, examining how minimum wage, immigration, and education affect the labour market.

Basically, he found that raising the minimum wage and hiring new arrivals had no negative effects.

Although his conclusions have been tested, over and over, business owners still trot out the same old shibboleths. It makes common sense, doesn’t it, that paying employees more will raise prices and cut profits? And that since there are only so many jobs out there, an immigrant has to take a job away from a Canadian? Doesn’t it?

Tell that to Henry Ford. He doubled his workers’ wages in 1914 so they could afford to buy his cars. Fifteen million Model-T’s proved him right.

If economic truths take that long to gain approval, how long might a doctoral dissertation on autism in young people take?

Yet it may prove equally significant.

Jill Sanghvi wrote her thesis in India, for Vrije Universiteit in Brussels, Belgium.

Sanghvi recognized that most studies treated autism as a “deficit.” That is, it rendered the person less than normal. Handicapped. Victim of a disability.

The words themselves have negative connotations.

And if that’s what you’re looking for, that’s what you will find.

These studies were all by non-autistic adults. Writing ABOUT, or FOR, people with autism.

Sanghvi resolved to do something different. Young people themselves would tell their stories. And she would not ask them about the “deficits” they experienced as objects of ridicule, bullying, or pity. She would ask about their “wonderfulness.”

Instead of gathering reams of statistics in a qualitative study, Shanghvi chose a qualitative approach.

She worked intensively with a small sample group: six children, aged 10 to 18.

Five boys and one girl.

All six knew they had been diagnosed with autism, and were willing to talk about it. Extensively.

It took time to win their confidence.

And then the stories came pouring out.

But because these children don’t think in the same linear patterns, the same coherent logic as, well, “normal” children, simply transcribing their interviews made them look unfocussed, unclear, unsure of themselves.

So Sanghvi took a huge risk. She transcribed her interviews as poetry. Free verse, if you will.

Her mentor, Dr. Don Sawatzky, former professor of psychology at the University of Alberta, has supervised 83 doctoral candidates. It’s the first dissertation he has ever seen that presents its findings in poetry. “I don’t think it has ever been done before, anywhere,” he says.

Sanghvi’s academic jury in Brussels agreed — it had never been done before. But it took them only ten minutes conferring in private to grant her a PhD.

As Sanghvi notes repeatedly, the biggest problem for people with autism is not any “disability” of their own, but the near-universal assumption that they have a disability:

“For decades, literature about autism has been dominated by medical deficit discourses. What is missing within literature is the lived experience of people with autism; in particular, the voices of young people with autism.

“Accordingly… society mainly listens to dominant discourses that portray the experience of living with autism as a struggle and burden.”

Later, she writes: “Autism is a social construct created by those who have knowledge and are in positions of power. That is why we find third-person accounts of autism … about deficits and interventions that could possibly bring people with autism ‘closer to normal’.”

The girl among Sanghvi’s interviewees offered an alternate perspective:

“Autism is just basically being different

No one is really regular

Everyone is a complete train wreck somewhere

but I am more than others

It is sporadic. I forgot what is said

Sometimes I do concentrate but that doesn’t mean

you are just up in the clouds every single day

I don’t know if it is a disability in my case

it doesn’t disable me from doing anything

So it’s not a disability.

In another “poem” the same girl challenged,

“You don’t know how my brain works

Are you a doctor? Have you done an autopsy? It’s definitely not on me.

So you don’t know.”

When I was young, deaf and blind children were segregated in a special school. Because they weren’t “normal.” They might disturb us.

That has changed, thank God. But we persist in thinking of people with autism, young or old, as different. Less than us.

It takes a long time for one idea to replace another. Jill Sanghvi has made a start on that process.

Jim Taylor is an Okanagan Centre author and freelance journalist. Email: rewrite@shaw.ca.