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Caring for kids with autism: An in-depth study

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Following Benji Weizman’s bar mitzvah 10 years ago, his parents received a flood of congratulatory messages, not only from invited guests, but also from congregants who remembered his tantrums and other behavioural issues when he was younger.

Benji Weizman has high-functioning autism, a neurodevelopmental disorder characterized by impairments in social communication and a restricted range of interests and behaviours. His bar mitzvah preparations included, among other things, therapy to ready him for congratulatory gestures at a time when he was averse to touch, said his mother, Sandra Weizman, from their home in Calgary.

Benji Weizman has a passion for Judaism and now works part-time as a Torah chanter, a skill he learned for his bar mitzvah. For children on the autism spectrum who have strong perseverative interests – a common trait – Sandra Weizman advises using those interests to teach them other things. When Benji Weizman was a teenager, for example, she arranged for him to volunteer at Chabad, which helped expand his life skills.

As a child, Benji attended Calgary’s Akiva Academy, accompanied by an aide, in a class that included special needs children. The small Jewish day school was “fantastic,” according to his mother.

Benji Weizman is part of a cohort that has grown dramatically in recent years. The incidence of autism spectrum disorder in children is now estimated at one in 66, according to a recent report from the Public Health Agency of Canada.

Likewise, a recent U.S. Centers for Disease Control and Prevention study showed that there has been a 150 per cent increase in autism cases in children since 2000.

Yona Lunsky, director of the Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health at Toronto’s Centre for Addiction and Mental Health, believes that a combination of factors is probably involved in the increase, including
a broader range of what is now recognized to be autism.

Yaffi Scheinberg, executive director and head of school of Kayla’s Children Centre (KCC), said that in the past, some children who are now diagnosed with autism would have been said to have “quirky behaviour,” or deemed “difficult to manage.” She added that the “overwhelming majority” of the school’s 75 students have been diagnosed with autism. (The academic arm of KCC, which serves children with special needs, used to be called Zareinu.)

The increased prevalence of autism is also reflected at Reena, the Toronto Jewish organization established in 1973 for children with developmental disabilities, which now also serves adults. Of the 330 adults in Reena residences, at least half are on the autism spectrum, and it also has a small amount of housing for children with autism, typically those with complex needs and extreme behavioural difficulties, said Sandy Stemp, the organization’s chief operations officer. Almost 75 per cent of children in the organization’s outreach programs are on the spectrum, she added.

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Carolan Halpern, whose 45-year-old son was diagnosed with autism in 1975, when he was two years old, has seen positive changes since that time. Ideas that were new when her son was diagnosed – the importance of early intervention and a move not to institutionalize autistic children – have become standard.

But not everything she was told was true. “He understands a lot more than we ever realized,” Halpern said of her son.

She found support at the Ontario Society for Autistic Children, now called Autism Ontario, but she more or less “gave up on” the Jewish community after the Toronto Jewish school she and her husband had chosen declined to accept their son.

Eventually, they found a synagogue that met their needs, but the special needs programs they tried many years ago at the JCC did not.

Although things have since improved, Lunsky said the Jewish community still has “a ways to go” toward inclusivity, noting that autism is a lifelong condition. She said that embracing diversity is “kind of embedded” in Jewish culture, but, to cite one example of how to be more inclusive, she mentioned the issue of accommodating people who need to move around during synagogue services. She also said that “typical bar mitzvah parties” can be overstimulating for someone with autism.

“If you want to know how to support somebody with autism, or how you can better support someone, ask them,” she advised, adding that people’s needs change over time.

At the Miles Nadal Jewish Community Centre (MNJCC) in downtown Toronto, all staff were trained by Autism Ontario, following a needs assessment four years ago.

“We’re really focused on having an integrated, holistic approach,” said Liviya Mendelsohn, the JCC’s director of accessibility and inclusion. The MNJCC serves 350 young adults with developmental disabilities and has some programs specifically for young adults with autism.

In Montreal, Federation CJA and its affiliated agencies offer services based on need, ability and interests, rather than diagnosis, said Leah Berger, its director of allocations and agency relations. Among its initiatives are school-based academic interventions, recreational programs, a camp and therapy. Recently, Federation CJA hired Carly Goodman to be its full-time inclusion co-ordinator.

Camp B’nai Brith, outside Montreal, has a special needs program for kids aged eight to 16 and is piloting a young adult program, as well. The Miriam Foundation, which has roots in Montreal’s Jewish community going back to the 1960s, has 19 community homes and supports the See Things My Way Centre for Innovation in Autism and Intellectual Disabilities.

In Toronto, when Halpern’s son was young, Reena was still new and Zareinu didn’t exist yet. Nor did DANI, a centre in Thornhill, Ont., that caters to young adults with special needs. Now, there are Jewish schools with inclusion programs and programs like Chabad’s Friendship Circle, which matches volunteers with special needs children.

Susie Sokol, a co-founder of DANI, said the organization is looking into establishing its own housing. At its centre – where participants can take part in study, volunteer work and other programs – there is a kosher cafe and catering business, where participants work. The business helps fund the organization.

Scheinberg said her school, KCC, has several autism tracks, with a full range of services, including applied behavioural analysis. Families on the waiting list for provincial government funding can purchase services by the hour, but it can end up being “very costly.”

Yocheved, a haredi woman who requested that her real name not be used, has an 11-year-old daughter who is “very high functioning,” but whose situation is complicated by conditions including anxiety and a constant need for stimulation or entertainment.

Mental health issues such as anxiety are more common in people with autism than in the general population, Lunsky said. A biological component could be a contributing factor, she noted, “but much of it is also related to psychosocial stressors, or the stressful environments people live in, which are not autism-friendly.”

Yocheved’s daughter, Tovah (also a pseudonym), has “long, painful, intense meltdowns,” in response to sensory overload or difficulty transitioning from one situation to another. The incidents can be embarrassing, dangerous and frustrating. Making matters worse, people can be “very judgemental,” Yocheved said. Recently, a woman yelled at her during an incident in a parking lot. “People think, ‘Why can’t this lady control her daughter?’ ”

After Tovah was diagnosed at age seven, she started attending Zareinu. Her diagnosis was life changing for both her and her mother, who felt “indescribable relief,” from the strain of caring for her daughter for years, “with no solution in sight.”

Scheinberg noted that “studies are showing it’s harder to diagnose girls with autism,” and some are not diagnosed until age 10, 11 or 12.

Yocheved has found some support in her tightly knit community, where volunteers or a friend might take her daughter for a couple of hours at a time.

The cost of services is a challenge, Yocheved said. Government funding helps with therapy, but with a limit on the number of funded hours, “it’s gone in the blink of an eye.” The family also thinks that having Tovah attend an Orthodox sleepover camp is a priority, despite the cost, Yocheved added.

Gail Saperia, a DANI board member, said that, “Unless you’re in this world, you don’t really understand what’s involved.” If parents need a break, they have to find “very high quality people to stay with their child, who know (their child), who will do things with them, who you can trust.”

Saperia described her son, Jesse, 27, as “very high functioning … incredibly friendly, sweet and very smart.” He does have communication issues, she noted, including random vocalizations. Sustained conversation is a challenge for him.

Saperia recalls the developmental pediatrician who incorrectly predicted that her son would not learn any new language after age seven. At that age, she said, he could barely say “mummy” and “daddy.”

But he now works two mornings a week at Red Lobster, rolling cutlery inside napkins, filling sugar bowls and setting tables. At work, his mother says he is “fully engaged” and doesn’t vocalize. “It’s great for him on many levels and proves these people can contribute and be very good employees,” she said.

As children grow up and parents age, housing becomes “a huge issue,” Saperia said. “That’s the fear, the worry, the grief. What’s going to happen to our young adults when we are no longer here to care for them?”

She would like people to know that, “If someone is autistic – or whatever their disability is – they deserve the respect that anybody else does. They deserve to be treated with kindness.”

Sandra Weizman, like many of her counterparts who have children with special needs, has also been an advocate for people with disabilities. Almost a decade ago, she approached the Calgary Jewish Federation about opening its affiliated organizations to individuals with special needs. Her son – who has taken part in Hillel programs and conventions over the past couple of years – is now benefiting from that initiative, along with his peers.

Montrealer Joel Yanofsky, whose 19-year-old son Jonah is part of this summer’s pilot program at Camp B’nai Brith, would advise community members to get to know people with autism before making judgments. “It’s very easy to judge kids like my son,” he said. “You end up missing things like his sense of humour and his sense of fun.”

The author of the 2011 memoir, Bad Animals: A Father’s Accidental Education in Autism, Yanofsky said that, as far as resources for people living with autism, “there’s never enough,” a sentiment that was echoed in some form by a few others who were interviewed for this article. But he said the Jewish community in Montreal “has done great stuff.”

In the years since his memoir came out, Jonah Yanofsky has taken part in various programs in the Jewish community and celebrated his bar mitzvah at Temple Emanu-El-Beth Sholom, which Joel Yanofsky blogged about for the New York Times.

Recently, he wrote an ebook for Today’s Parent called The Now-What? Parents’ Guide to Autism, with the type of information he would have liked to have had when his son was first diagnosed.

“It’s easy to be very hard on yourself when all this happens,” he told The CJN. “You’ve got to give yourself a break. If you’re harder on yourself, you end up being harder on your kid.”

As well, he suggested, “Don’t trust experts as much as you’re inclined to.… You end up becoming the expert on your child. Trust that, too.”

 

The following is a list of helpful resources: 

1. The Toronto Jewish Disability Resource Guide, which also includes resources in other cities and countries (downloadable at http://dev.torontojdn.org/resource-guide/ )

2. The Now-What? Parents’ Guide to Autism, by Joel Yanofsky (https://www.todaysparent.com/family/special-needs/todays-parent-launches-first-autism-ebook-for-canadian-parents/)

3. Autism Canada (autismcanada.org)

4. Autism Ontario (autismontario.com)

5. Ontario Autism Program (government support):  children.gov.on.ca/htdocs/English/specialneeds/autism/ontario-autism-program.aspx

6. The Autism Acceptance Project (http://www.taaproject.com)

7. Reena (reena.org)

8. Miriam Foundation (miriamfoundation.ca and http://www.seethingsmyway.org)

9. Kehilla Montreal (housing) (https://kehillamontreal.org)