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March 14, 2014
Symposium is first step
Israel, Canada cooperate on autism research.
LINDA GRADSTEIN THE MEDIA LINE
It may not be often that presenters at a scientific conference quote poetry. But Connie Putterman, one of the organizers of the conference and chair of the Canadian Friends of the Hebrew University, did just that, reading a poem her son, who has autism, wrote when he was 13 years old. Called “The Chanukah Candle That Could Not Burn,” it expresses the feelings of difference that many autistic children experience.
“I am a beautiful Chanukah candle but I could not burn, I could not burn,” the poem begins. “I just couldn’t get that spark right. I was trouble, every Chanukah night…. But they didn’t give up hope, so they tried, night after night, match after match, fire after fire, until I burned.” The poem also provided evidence of the one of the themes of the symposium – the importance of early intervention.
“The diagnosis should happen as quickly as possible because we do know that early intervention has a great impact both on the children themselves and also on the families,” said Prof. Cory Shulman of the Hebrew University of Jerusalem’s early-childhood graduate program. “As a result of that, we hope that we can get to children as young as 2 years old. Here in Israel, we’re really doing that much better than in other places.” At the same time, she said, it is not always easy to make a diagnosis of autism.
“Autism is a difficult one. There’s overlap with a lot of other disabilities and it is not easy to make a definitive diagnosis. The second part of the research I’m presenting here is taking a group of children from 15-30 months, when they first came in for a diagnosis, and following them until first grade to see what their developmental trajectories are, what can predict a better outcome and what kinds of services they’ve been able to access,” she said.
In most Western countries, the percentage of children diagnosed with autism is about one percent. The spectrum runs from those with severe autism to those with Asberger’s, who often have high-functioning intelligence but have trouble deciphering social cues.
The participants were riveted by Lihi Lapid, an Israeli novelist and wife of Israeli Finance Minister Yair Lapid, who has written an autobiographical novel on her experience as a mother of an autistic daughter, who at age 17, still does not speak.
“Part of being a mother for an autistic kid is feeling guilty all the time for what you didn’t do,” Lapid told the crowd after detailing all of the kinds of therapies, including horseback riding therapy, that her daughter has received.
Being a parent of a child with autism can be all-consuming. “I don’t know who I am without her,” Lapid said. “I don’t know what kind of person I am. I definitely don’t know which kind of adult I am. She made me the person I am.”
While services in Israel are offered on the national level, Canada generally functions province by province. “We share a lot of interests and sensibility,” said Lonny Zweigenbaum, professor of pediatrics at the University of Alberta. “There’s a real focus on individuals with autism and trying to improve diagnosis and treatment. That’s very much the focus of this conference. We are sharing our success and trying to understand the differences in the service system and how we bring it into practice.”
Israel’s newly appointed chief scientist with the Ministry of Science, Technology and Space, Nurit Yirmiya, is also a professor of psychology at Hebrew University. She has been working in the field of autism for the past 30 years.
“I hope that we will be able to bring this level of cooperation into a government-to-government agreement and that autism will be part of the agreement with Canada,” she said to applause. Her research deals with questions of what is referred to as “resolution,” of how parents learn to cope with a diagnosis of autism. Her research found that even years after diagnosis, between one-third and half of all mothers still had unresolved issues surrounding the diagnosis.
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