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The Boy Who Wasn't There

When Paolo and Clara Aquilini were told their son was autistic and would “always be like that,” they joined a group of parents determined to change our approach to the disease
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HAPPY ENDING: At age 14, Christian Aquilini has benefitted immeasurably from the controversial and expensive therapy known as applied behaviour analysis. The province refuses to fund the treatment, fearful of its cost Brian Howell
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When Paolo and Clara Aquilini were told their son was autistic and would “always be like that,” they joined a group of parents determined to change our approach to the disease

Set on a forested slope above Grandview Highway in East Vancouver, Sunnyhill Hospital has served for decades as a centre for the assessment of children with serious mental-health problems. Christian Aquilini was two years old when his parents, Paolo and Clara, first took him there for assessment in 1996. The Aquilinis’ first child, Alessia, healthy and robust from the start, had developed normally. Christian, on the other hand, didn’t speak and didn’t make eye contact. He seemed to live in a world of his own.

The pediatrician at Sunnyhill listened and looked and ordered a battery of psychological tests. He told the Aquilinis that their son might have autism. They were unfamiliar with the term, and with the strange neurological disease it describes. In its mildest form, autism causes children to have trouble with speech, social interaction, and empathy; they prefer to immerse themselves in odd repetitious behaviour or obsessions. In its severest form, autism produces children who never speak, never learn, never have a friend, never become capable of feeding themselves or being toilet trained. Lost amid their own synaptic pathways, they’re destined, in most cases, to be wards of the state.

Christian underwent test after test as months passed; the Aquilinis grew impatient as they awaited a diagnosis. They got angry when the hospital’s counselling psychologist finally said: “Accept it. He’s not going to be going anywhere. He’s always going to be like that.” She seemed to be sentencing their child to lifelong silence. Paolo, the son of an immigrant father of legendary determination, was not about to abandon his own son in the face of callous medical opinion. If the doctors at Sunnyhill won’t help Christian, Aquilini thought, I’ll find a way to do it myself.

He made contact with Families for Early Autism Treatment, a group of activist parents united by Sunnyhill’s dissembling and discouragement, and by provincial inaction on the illness that had silenced their young children. Within weeks, Aquilini found himself in California at UCLA’s Lovaas Institute. It’s run by a Norwegian-born clinical psychologist, Dr. Ivar Lovaas, who developed applied behaviour analysis (ABA), a treatment strategy that has shown good results in many autistic children. For the first time, Aquilini understood there was hope for Christian. But there were two important determinants in the success of ABA: the intensive, one-on-one program had to be started early; and the parents had to be able to afford the $65,000-a-year cost.

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