Beyond the Looking Glass

Estimated Reading Time 4 Minutes
Is autism on the rise? Walk into any special needs pre-school program across Canada and you will see groups of children busily stacking blocks, lining up toys, waving-shaking-banging objects, trying to see how they work, and otherwise staying highly preoccupied with what they are doing.

What you won’t see is much eye contact or attention paid to other people. What you won’t hear is much actual talk. That’s because so many of these kids are diagnosed with autism – a disorder of communication and social interactions accompanied by highly repetitive movements and a severely narrow range of interests.

Let me review my 30-year history working in the world of autism and developmental disabilities.


It was September 1978 and I was working with my mentor, Philip R. Zelazo, PhD. We had just seen a beautiful little two-year-old who showed all the classic signs of autism – big delays in his language, little attention to others and rocking his whole body rhythmically as he lay on the floor spinning the wheels on a toy truck. Zelazo’s diagnosis of the little boy? ‘Developmental delays of unknown etiology’.

Huh? After the family had left the office I looked at Zelazo quizzically, asking him, “Why not autism?” His response was simple, “He’s too young to say for sure. Let’s get him talking and then we’ll see.”

Over the next years, I came to realize the lesson that Zelazo was teaching me: Don’t dole out doom and gloom; find a path of optimism, because in 1978 a diagnosis of autism was tantamount to a death sentence. Rather, Zelazo was trying to be precise – focus first on acquiring language. He had seen too many kids pull out of autism with his highly effective language therapies, so a quick diagnosis at such a young age was discouraged.

His lesson was:
> Avoid labels
> Be precise
> Keep doors open

And, he said, don’t use the word ‘autism’ until, at an older age, the diagnosis is unmistakable. The message was the same in 1984 when Zelazo and I both moved to McGill University and the Montreal Children’s Hospital. Same damn thing in 1988 when I took a job at Harvard Medical School and the Children’s Hospital in Boston. Autism was a word doled out cautiously.
It wasn’t until the mid-1990s when a palpable change in diagnostic practices could be felt.

Reports were coming out from researchers like Zelazo at McGill and Ivar Lovaas at UCLA, indicating that some of these children, with intensive therapies, were showing early signs of recovery. These reports were making it into newspaper and television stories, so the public was becoming aware of the potential for progress. The diagnostic wheel turned largely because of money. If you wanted the schools to be more responsive in paying for intensive and pricey therapy programs, the child had to have a big-time diagnosis that included the possibility of improvement. ‘Mental retardation’ (MR) didn’t cut it. There was no perception of ‘recovery’ from an MR diagnosis, so why spend tons of money? Autism, however, was becoming associated with hope. As a result, this became the diagnosis de riguer for getting maximum funding for educational programs. Here’s a news flash: Money, public opinion and politics drive diagnostic practices. They do today, and probably always will.

To look at government statistics from any industrialized nation, autism is sharply on the rise around the world. Statistics Canada is reporting roughly the same numbers as found in the US or across Europe, which now pegs the incidence of autism to be about one in every 150 individuals. Within the last ten years the rates had been reported to be about one in every 500, while in the 1970s it was reported at less than one in every 1,000.

As you might imagine from these changing numbers, many believe there is a growing autism epidemic. Nobody has been more vocal on this topic than New York Times contributor David Kirby. In his book Evidence of Harm, Kirby makes the case that autism is on the rise and the culprit is the mercury preservative, thimerosal, that until a few years ago had been found in most childhood vaccines. Kirby’s basic point is that the increased vaccination programs that have been implemented around the world mirror the rise in the incidence of autism. Despite Kirby’s seemingly logical connection – exposure to mercury is bad for kids – there is no empirical basis linking it to autism.

There are a litany of differences between mercury toxicity and autism.

Autism is commonly called a ‘spectrum’, but many are more impressed at how different people with these diagnoses are from one another. Autism spectrum disorders include anyone with routine language and social interaction difficulties, but specific forms vary dramatically.

AUTISM – little or no language or attention to others; repeated patterns of movement and sharp limitations in cognitive abilities.

PERVASIVE DEVELOPMENTAL DISORDERS (PD) – the milder diagnosis reserved for toddlers but used at every age for people who have functional language, yet struggle in how to relate to others. Their cognitive abilities are close to age-appropriate, but still limited.

ASPERGER SYNDROME – Highly verbal, if odd, in how they speak and socialize. Often isolated, not knowing how to make and keep friends. Mental skills are often gifted, particularly in algorithmic activities like math or engineering, yet lack the most basic common sense. Can you say, ‘Albert Einstein’? PC

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