Make autism about abilities not limits, says professor with condition

Stephen Shore says parents ‘knew I could do more than just stay in an institution’

Dr Stephen Shore: “It took my parents a whole year to get a diagnosis. When they did, the doctors said they had never seen a child who had been so sick.”

Dr Stephen Shore: “It took my parents a whole year to get a diagnosis. When they did, the doctors said they had never seen a child who had been so sick.”

 

When he was 2½, Stephen Shore could not speak. He was diagnosed as “psychotic”, with “atypical development and strong autistic tendencies”, and doctors recommended that he be institutionalised.

His parents disagreed. Today, Shore is professor of special education at Adelphi University in New York.

On Saturday, Shore came to the second AsIAm National Autism Conference in Dublin, arguing that people with autism should be helped to use the very things that make them autistic to lead fulfilling and productive lives.

Peppering his speech with strikingly honest, light-hearted and at times poignant stories from his own childhood, he told of the difficulties faced by his parents in the 1950s when little was known about the condition.

Diagnosis

“It took my parents a whole year to get a diagnosis. When they did, the doctors said they had never seen a child who had been so sick,” he told delegates.

Having rejected advice to send their son to an institution, his parents convinced a school to take him in 12 months’ time.

Over that year, his parents did everything they could to help their son. Today, it would be called early intensive intervention. Back then it did not have a name. Instead, it was simply a case of parents “desperately trying to reach their kid”.

The year passed. Shore was brought back to the school that had at first rejected him and then agreed to take him, only on the back of the pleadings of his parents.

“I got re-evaluated and instead of being considered psychotic and ready for an institution, I got upgraded to neurotic,” he said.

He loved watches from an early age, finding it easy to take them apart and put them back together. Soon, his parents found other devices for him.

By six, he was at a mainstream school. In his own words, he was “a social and academic catastrophe”, endlessly repeating the letter “B” over and over again. “It probably didn’t endear me to my classmates,” he said.

By eight, however, he had developed a range of interests beyond his years, geology to astronomy and geography.

“I remember at the time I had a stack of astronomy books on my desk and my teacher told me I would never learn how to do math. But somehow I figured out just enough math to teach statistics at the University of Washington.”

Technology

Looking back, he says he is glad that his parents fought for him: “They knew that I could do more than just stay in an institution. It was a function of the times they wouldn’t do that now but back then that was all they knew.”

Today, he speaks around the world, urging people to think about what people with autism can do, rather than on what they cannot.

“I believe that we have the technology, we have the know-how, we have the wherewithal so that autistic individuals leading productive and fulfilling lives can become the rule rather than the exception. Rather than looking at the closed door of disability, disorder and deficit let’s take a look at abilities,” he said.

Falling between the gaps

Prof Louise Gallagher from Trinity College is worried about the young Irish with autism today who are falling between the gaps of the mental health and disability services.

People with autism come under the care of the disability services. However, when they develop a mental health disorder, which is common in autism, they are advised to contact the mental health service, which often refers them back to disability because of their autism.

Up to two-thirds of children with autism can develop psychiatric symptoms of some kind. Up to a third may have to be assessed for a mental health disorder.

When they are young, the most common issues are phobias, sleep problems, ADHD, generalised anxiety disorder and movement disorders such as tics. When they get older they are at risk of developing depression and social phobia.

Such problems, she said, are episodic and treatable, adding that the HSE’s Mental Health Division is looking at ways to ensure services are more integrated. Services must become more “autism-friendly”, she said.