“Autism scares me to death. I am so scared that I am driving myself nuts.”
“I understand your anxiety. I think autism is the number one biggest mystery of our generation.”
– Exchange in an online forum for new parents
This and many similar conversations demonstrate how parents’ fears about autism are often augmented by a dread of the unknown: an awful sense of helplessness and of having no clue what might trigger the condition.
Autism, though, isn’t the mystery it once was.
“If people expressed these kinds of fears five years ago, they would be entirely accurate,” says Stephen Scherer, a University of Toronto geneticist. Scherer is also Director of The Centre for Applied Genomics, at The Hospital for Sick Children. His laboratory is one of the world’s leading facilities dedicated to understanding the genetic basis of autism.
“Today, if you took a hundred children with autism, we could explain the genetic causes of about fifteen of them.”
Fifteen percent might still sound low, “but at least for some families we now have an answer,” he says. “This is hugely important for a family’s understanding and planning. Parents are hungry for information of any kind, but the most common questions we get with a diagnosis are, ‘Why did this happen and will my next child, or my sister’s child, have autism?’ We’re starting to have real answers to these questions.”
Scherer believes that as soon as five years from now, research could identify a genetic basis for anywhere between 50 and 90 percent of diagnoses. With each advance, there is potential for more and more families to gain access to early diagnosis and hopefully in the longer term, treatment for autism.
“The most important factor in minimizing the impact of autism is to start interventions early – if it’s possible, even before the first signs of autism appear,” says Scherer. This year, in Ontario, children with autism and those suspected to have autism are beginning to be tested using genetic scanning technologies.
Scherer’s research helps empower parents, ease their fears and helps them take control of both the emotional and medical aspects of a condition that is a bit less scary than it once was.