Is this the end of Asperger's?

New diagnostic changes lump Asperger’s syndrome under the broader umbrella of autism spectrum disorder. Will this hide the “invisible disability” altogether?

Photo: Jesse Lefkowitz

The letter ‘D’ is missing,” my four-year-old, Jackson, announces. On the floor of his kindergarten classroom, two girls sit alongside him, working on an alphabet puzzle. “The letter ‘D’ is missing. It’s gone!” he cries out, cheeks flushed. “Oh no, the letter ‘D’ is missing!” Without warning, he leans over and punches one of the girls.

When you think of autism, you probably picture Dustin Hoffman’s quirky savant in Rain Man. I know I used to. Then I had my son. Last year, Jackson was diagnosed with Asperger’s syndrome (AS), a condition on the “high-functioning” end of the autism spectrum. At first glance, you’d be hard-pressed to witness signs of his AS (sometimes referred to as Asperger’s disorder). He’s precocious and articulate, and not once have his hands flapped. That’s not to say that his condition doesn’t have its challenges.

Next month, a new version of the Diagnostic and Statistical Manual of Mental Disorders (DSM), used for diagnosing mental-health conditions, will be published — the first major revision in nearly 20 years. One of the most controversial changes in this fifth version is the removal of Asperger’s syndrome, which will now simply fall within the umbrella diagnosis of autism spectrum disorder (ASD).

For parents like me, the implications of the revision are worrisome. Will my son’s particular condition still be recognized? Or will he slip through the cracks, losing out on the precious funding and therapies he needs to manage in his day-to-day life? Because, though my son may not fit perfectly into society’s idea of what a child with autism is like, he often doesn’t fit into the “norm,” either.
I can’t pinpoint exactly when I noticed his difference. He was certainly a demanding, sensitive baby. Yet, as a first-time mom, I had nothing to compare him to. Certain sounds — blenders, toilet flushes, hand dryers — freaked him out. He was fascinated with phones, and played with little else. Instead of a stuffed animal, he slept with an old handset.

By his second birthday, he could count past 100, and would recite every single house number and licence plate in sight. (Needless to say, walking around the block took us an inordinately long time.) He raced up to strangers in the street and hugged them. Sweet, you might say, except that it wasn’t normal. He avoided other kids, screeching if they approached him on the playground.

Though people assured me Jackson’s behaviour was a passing phase, something gut-deep told me that it wasn’t a stage, but a symptom. The real panic bells went off when he started preschool. He rarely made eye contact. Occasionally he’d lash out at other kids for no apparent reason. Seemingly random things would set him off — like that missing puzzle piece.

My son’s paediatrician referred him for a psychological assessment. He was then diagnosed with AS.

Understanding Asperger’s
Added to the fourth version of the DSM in 1994, Asperger’s syndrome is marked by impaired social interaction and difficulty with non-verbal behaviours. “Aspies” typically have an intense interest that they pursue to the exclusion of other hobbies. Some have repetitive motor mannerisms, like flapping or spinning. What primarily sets Asperger’s apart from more severe or classical forms of autism, though, is language. Children with AS do not experience significant cognitive delay. While speech may be on target, language patterns may seem odd or scripted.

AS is a milder form of autism, but it is autism, nonetheless. The number of children diagnosed with an ASD is staggering. According to The National Epidemiologic Database for the Study of Autism in Canada, the prevalence of ASD is estimated to be one in 94 children ages six to nine, moderately higher than that reported in the US. No one can say why, but those figures keep on climbing.

While mom of two Jodi Echakowitz first noticed something was “off ” with her son Kyle between 18 months and two years, he wasn’t diagnosed with AS until age six. Like me, she immediately, and paradoxically, felt the relief that comes with knowing her child’s behaviour wasn’t simply the result of bad parenting, but a by-product of his disorder.

She refers to his condition as an “invisible” disability. “If somebody looks at my son, they would never know,” says Echakowitz, who sits on the board of directors for the Asperger’s Society of Ontario. “So if he does something that is considered eccentric, they are very quick to judge because he looks like everybody else.”

In the playground, a boy calls Jackson’s name and looks confused when there’s no reaction. “Why won’t he answer me?” the boy asks me, crestfallen. My heart cracks a little. Every day is punctuated by moments like this one, in which I am reminded of my son’s otherness, along with his — and our — need for help.

DSM-5: The end of Asperger’s
Though parents and Aspies remain apprehensive about the loss of the Asperger’s distinction, many professionals view the revision as a step in the right direction.

“The vast majority is not going to require re-diagnosis, so people who have an Asperger’s diagnosis will keep an ASD diagnosis,” says Wendy Roberts, co-director of the Autism Research Unit at Toronto’s Hospital for Sick Children. “Hopefully we can get that formally recognized in order to meet government or educational requirements for treatment.” In theory, Roberts claims, the new grading system of autism should speed up and simplify the current diagnostic process. (Find more info at dsm5.org.)

While it is difficult to reliably diagnose a child younger than two, particularly one with Asperger’s, funded therapies are limited and waiting lists can span years — time these children simply don’t have. Recent studies have found that the brains of young autistics are malleable and can be effectively “rewired” if treatment is timely.

It remains to be seen whether the dissolution of the AS label will help or hinder the prognosis for children like my son. “The government has to do more to fund those with Asperger’s,” insists Echakowitz. “Our kids tend to lose out. Just because you have a higher IQ doesn’t mean you don’t face challenges.”

Jackson is now partway through junior kindergarten at a public school. His teacher is caring, the principal supportive. With no dedicated assistant in the classroom, he relies on the help of volunteers, a visual schedule and a timer. Some days run smoothly. Other days, he simply can’t cope. While we wait for financial assistance, we pay for as many therapies — social communication, occupational and behavioural — as we can afford. Progress is slow, but there are signs of improvement, as my happy little boy tries his best to learn the skills that will help him function in life. Often, it seems that we, his parents, have landed in a country where we don’t speak the language or understand the customs, and he is our interpreter. But I have no doubt that this journey, though painful and confusing at times, is worth every step.

A version of this article appeared in our April 2013 issue with the headline “The end of Asperger’s?,” p. 30.

Want to talk to other parents about this issue? Join the Health board in our forums>

No Comments