Helping autistic kids requires certain daring

TheStar.com – GTA
Published On Mon Aug 30 2010.   By Heather Mallick, Star Columnist
Any tale of autism ends in tears, generally within four minutes. That’s short-term. Long-term, there’s grief, rage and inevitably misunderstanding. That’s what happened when Susan Fentie-Pearce, mother of a 14-year-old severely autistic boy, approached her MPP, Greg Sorbara, for help. Now she’s furious at him and he is, I suppose, left bewildered.

Such is the world of autism. The disorder is genetic, heritable and incurable. Parents get extremist in their love, politicians fail to wave a magic wand and then ugly words are hurled, often unjustly.

Fentie-Pearce, an autism campaigner, which is what all such mothers eventually become (fathers less so, I don’t know why), had watched in despair as her youngest, Keith, became increasingly violent as he grew older and stronger. Keith cannot speak. Scarcely able to express his thoughts and frustrations, he injures himself, a typical symptom of the disorder. And now he attacks his mother whom he outweighs, kicking, biting and pulling her hair out, not because he dislikes her but because this is what a child at his extreme level on the autism disorder spectrum does.

So Fentie-Pearce showed Sorbara pictures of the bruises on her legs and the head wounds. Sorbara, himself the adoptive father of a severely autistic child, did the rational thing, which in this case was saintly. Deciding that the first concern was the mother’s physical safety and that getting her son into residential care was the fastest and kindest way to do that, he suggested she have him charged with assault so that a judge, perhaps in juvenile court or family court, could hear the case and have Keith sent into residential care.

Fentie-Pearce blew up. Essentially, she accused Sorbara of calling her son a criminal. What she wants is a male provincial employee in her Maple home to manage Keith during his violent episodes, which, as the Star reported yesterday, would have cost the family $42 an hour.

Sorbara’s advice “just dumbfounded me,” Fentie-Pearce told Star reporter Madhavi Acharya-Tom Yew. “He’s not a criminal; he has a disability.”

What we have here is a failure to communicate, perhaps because autism, said to affect 1 in 110 children, was not widely discussed until recently. Its gentlest form, called Asperger’s Syndrome, is marked by obsessiveness and an inability to read social cues. Severe autism means lifetime care.

Now with better research and a flood of new diagnoses (there is no pre-natal autism test, cousin marriage is still allowed in Ontario, and doctors may be over-diagnosing), parents aren’t mystified by their odd children. They are shattered. Fentie-Pearce and her husband have four sons, two of them autistic, and they want things the health care system either can’t afford or won’t provide despite campaign promises it now regrets.

It’s the same hellish path trod by parents of schizophrenics. There aren’t enough group homes for violent autistic teenagers in the same way that there are not enough teachers of $60,000 a year Intensive Behavioural Therapy for pre-school kids with autism.

A four-year-old child with severe autism is like all children, beautiful and fantastically lovable. But I know one such tiny girl who grabbed my arm affectionately, causing extreme pain and leaving me bruised. She was restless that day. Imagine living with Keith.

Sorbara, who knew how hard it would be to get help, had a brainwave. The mother heard it as “offensive,” one of the most dangerous and fashionable words we have, because many things seem offensive, even things that aren’t. Being offended is a feeling. Sorbara wasn’t feeling, he was thinking. He offered a smart solution, and now the mother’s autism organization has a Facebook page pelting Sorbara with abuse, as if he had just binned a kitten.

It’s a mistake to attribute motives, as one can so often be wrong. But Keith’s mother visualized her son in a jail cell with criminals (which no Family Court judge would have allowed) and she felt guilty. Sorbara, on the other hand, saw a way for the mother’s bruises to heal and to start working on a life plan for Keith.

Good Samaritans take a risk. I admire Sorbara for taking it and I’m sorry he was made to suffer.

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