JERUSALEM — Researchers and others involved with autism found many commonalities at the three-day Canada-Israel Autism Spectrum Disorder (ASD) Symposium this month at the Hebrew University of Jerusalem while addressing challenges such as geography, ethnicity and autism as a lifelong condition.
The three-day symposium, from March 2 to 4, was sponsored by organizations from both countries: Hebrew U along with its Institutes for Advanced Studies (IAS) and Medical Research Israel–Canada (IMRIC), Canadian Friends of Hebrew University (CFHU), the Ontario Brain Institute and NeuroDevNet, a Canadian network of Centres of Excellence.
It was a long time in the making, according to Toronto mother Connie Putterman, one of four organizers. Putterman and her husband, David Golden, among the few lay participants, were drawn into the complex world of autism research in 2000, when their 17-month-old son Ely was diagnosed with autism.
With little information available to parents at the time, Putterman said, clinical research projects gave them access to “the best minds” but also let them participate in the process, continually re-evaluating their son. “It was a big teaching tool… to be more observant, to describe our observations and articulate them.”
Putterman, a member of CFHU’s Toronto chapter, told The CJN how meaningful the symposium was to her. “Growing up as a Diaspora Jew… I’d dream about Israel and its survival.” Supporting Israel is not only about giving money but “about building relationships… teaching each other about the best ways of doing things.” While in Israel, Putterman and Golden took a day off to run the Tel Aviv half-marathon to raise funds and awareness for autism research.
The first two days of the symposium were open to professionals only, with presentations on genetics, prenatal development, diagnosis and epidemiology. Canadian organizations from coast to coast were represented, including Toronto’s Centre for Addiction and Mental Health (CAMH), the Hospital for Sick Children, McGill University, the University of Manitoba, the University of British Columbia, Bloorview Kids Rehabilitation Hospital in Toronto, and Queen’s University.
On its final day, the symposium was opened to the public, and its focus shifted to explore the effects of autism on families and communities, including sessions on early diagnosis, services in Israel and Canada, and new treatments.
The day began with a talk by Lihi Lapid, wife of Israeli Finance Minister Yair Lapid and the mother of a 17-year-old girl with autism.
At first, Lapid said, she thought her daughter had a hearing problem. “They realize there’s a problem. They give us an appointment for another checkup… I realize it’s maybe not only the ears. I pray, ‘Please give me a deaf child.’ All the other possibilities, I realize, are much worse.”
Lapid acknowledged the importance of research and medical treatment, but said she herself was now focused on finding balance and happiness within her own family, a theme also addressed by Putterman, who said, “Hold on to those high expectations… If you keep raising them, they’ll keep meeting them… Your child will rise to them in their own way, whatever their capacity is.”
Presentations explored accomplishments and challenges in both countries.
“We’ve come a long way, but there’s still a lot of gaps,” said Wendy Roberts of Sick Kids in Toronto.
In Ontario, services for children with autism are often provided in “blocks” of six to eight weeks, followed by months of no treatment. Regular, consistent treatment would probably result in better outcomes for children and families.
Several participants spoke about dealing with autism throughout an individual’s entire lifespan. Roberts told The CJN that despite some negative developments in Canada – like Ontario’s denial of services to autistic adults with normal IQs – she’s hopeful that things will change soon.
Last week, the federal government allocated $20 million toward autism, of which Roberts hopes much will go toward helping autistic adults transition from school to university and later into meaningful, paid employment. “We need to get a whole lot better at developing those services.”
The biggest issue in diagnosis and treatment is probably money, despite the fact that autism may be disproportionately well funded compared to other conditions. Conference chair Asher Ornoy of Hebrew U said Israel may spend more than $500,000 for a child diagnosed with autism before the age of 18, compared to under $300,000 for kids with other neurological disorders.
Offering services outside of major centres is a problem for both countries. In Canada, given geographical distances, rural family doctors may not see many patients with autism or be up to date on the latest research and options. Israel, too, has fewer services available outside major cities, Ornoy said.
In some provinces, Roberts said, parents with an autistic child are given money annually to spend on services of their choice. This has spawned an industry of “people getting into the money-making business,” including unethical service providers who may not be backed by a professional college.
Finally, ethnic diversity remains a hurdle, said co-organizer Lonnie Zwaigenbaum of the University of Alberta, who also ran the Tel Aviv half-marathon with Putterman and Golden.
Among native Canadians, for example and among Arabs in Israel, diagnosis and treatment may lag far behind. “It’s a challenge to come up with culturally sensitive diagnostic measures and therapies.”
In his wrap-up session, Zwaigenbaum said he was thrilled that participants had discovered “a real sense of the commonalities,” and also by the emergence of “natural partnerships” between Canadians and Israelis working in similar areas.
Both countries are clearly moving in the right direction. As Zwaigenbaum told The CJN, “It’s not just about treating the symptoms of a disorder… it’s about helping an individual and their family find dignity and be part of society.”