"When he was a baby our rabbi used to tap him on the shoulder and say, ‘I’m going to barmitzvah this boy.’ But years later, when it was time to start preparing Saul for the ceremony, the rabbi said, ‘I cannot help you.’”
To this day, Susan Zur-Szpiro is unsure what caused her rabbi to renege on his promise to her autistic son, now 23. “He wouldn’t explain. Maybe when it came to the crunch, he realised he actually had no idea how to go about it. But he also refused to direct me to someone who might help. I felt shocked, betrayed and entirely alone.”
There’s no doubt that guiding Saul towards his Jewish milestone was going to take considerable expertise. As well as being autistic, he has a rare chromosomal disorder which has resulted in various learning disabilities and health problems.
But none of this deterred Avromi Frelich, the speech and language therapist Susan met at Saul’s specialist signing clinic. “From the first meeting, Saul responded extremely well to him so when I discovered Avromi was also the chazan at Hampstead Garden Suburb Synagogue, I asked if he’d be Saul’s barmitzvah teacher.”
Avromi agreed, and for two years he patiently and painstakingly taught an autistic youngster with minimal speech to pronounce Hebrew sounds, starting with basics such as ‘maaah’, before moving on to the more complex ones like “ch”.
But on the weekend of the barmitzvah, Saul became very ill, and Susan was unsure if the event would go ahead. “He was so weak, he had to be physically escorted to the bimah,” she recalls. “We didn’t know if he would utter a sound. And then he opened his mouth and, with a microphone to amplify his weak voice, sang his whole portion, word perfect. The pride, joy and relief were utterly overwhelming.”
In the autumn of 2015, Daniel Ellison was also facing vicarious pre-barmitzvah nerves. Would his son, Freddie, step up to the task and on to the bimah, or would he crumble under the ceremonial pressure?
“Like many autistic people, if Freddie doesn’t want to do something, he simply won’t,” explains Daniel. “But in the event, he recited the blessings before and after the portion and at his barmitzvah party he gave a speech in which he thanked me and his mother. Our guests dissolved. And so did we.”
That pleasant surprise has been followed by another. “His barmitzvah proved a turning point,” says Daniel. “He now has a much stronger sense of self, and is better behaved for it.”
But Freddie very nearly wasn’t a barmitzvah boy. “We are not particularly religious, but from the outset our shul, North Western Reform Synagogue, was so accommodating, we were persuaded to give things a go,” says Daniel. “They offered him one-to-one lessons and together we agreed on what was, and what was not, realistic for Freddie to learn.”
Unfortunately, though, not every shul is so accommodating to its autistic members’ needs. Some synagogues merely speak the language of inclusion we all want to hear.
Ask Ian Fagelson. His family used to be members of an Orthodox shul but when their autistic son, Jonathan, was approaching barmitzvah age, they left because “they never made him feel welcome.”
Happily, at Masorti’s New North London Synagogue (NNLS), where the family migrated, things could not have been more different. “Jonathan was very nervous as a child, but has a very good memory so learning his portion and the blessing was not difficult for him intellectually. But it was going to be very tough emotionally.
“The shul’s rabbi, Jonathan Wittenberg, was so thoughtful about this. He lent us a Sefer Torah before the start of Shabbat, and after he’d given the Saturday morning service, walked to our house where he conducted our son’s barmitzvah ceremony among family and close friends — with Jonathan hanging on to Rabbi Jonathan’s beard for much of the proceedings.”
“The point is that autistic children are different in their needs, so one approach doesn’t fit all,” says NNLS’s programming director, Rivka Gottlieb. “When it comes to cheder and then bar and batmitzvahs, we work closely with families to find out the best solution for them and their child.”
A key part of that bespoke provision is NNLS’s monthly special needs service, which features a lot of music and a visual timetable with a clear order of what’s happening. “When an activity is finished, the kids take turns to peel a sticker off the timetable to indicate that it’s complete. They find the predictability and routine reassuring. Equally, if a child wants to opt out and run around, that’s fine too.”
Evie Korn’s five-year-old autistic son, Isaac, has been attending NNLS’s special service for the past year. “The regular kids’ service was a challenge for us because the noise would unsettle him and because of our constant expectation that he wouldn’t do things like drink the grape juice at the right time. We felt we were constantly trying to prevent people from judging Isaac’s behaviour.”
In addition, her little son, who attends a mainstream primary, and who she describes as very bright and verbal, attends the shul’s cheder. “When he started, Isaac sat apart from the other children, and would get upset when he wasn’t allowed to play with toys whenever he wanted. “But over the past year, his personal teenage assistant, Millie, has changed all that. She explains exactly what’s happening, and doesn’t make him do anything he doesn’t want to. Now, during prayers he goes in and sits quietly on her lap. He’s become an integrated member of the cheder.”
So integrated that Evie has no doubt that in eight years’ time her son will have a barmitzvah. But like Susan and Ian, her first synagogue experience wasn’t so positive. “Our first shul was rather rigid in its outlook, so we left — you need to be flexible with autistic kids. It helps, for example, that NNLS is relaxed about head covering. At first, Isaac refused to wear a kippah because of the clip — like many autistic people he doesn’t like having anything in his hair.”
When Wren Goldstein had his barmitzvah, last year, he was also reluctant to wear a kippah. So, he donned a huge woolly hat instead. His rabbi, Shulamit Ambalu, who serves the north London Kehilla, was equally thoughtful when it came to writing the sermon for his barmitzvah. “Wren has two obsessions — football and birds. Amazingly the portion which fell on the Shabbat we celebrated his barmitzvah was about Noah sending the birds out of the ark. So, in my sermon I posited that Noah did this because he wanted to borrow the minds of the birds, that their way of seeing the world, would help him. It was a way of recognising and celebrating Wren and his way of seeing things.”
Rabbi Shulamit also read out Wren’s d’var Torah to the congregation. “It included information about his specialist knowledge of birds and it was wonderful to watch him see the impact his words had — he knew he was teaching the community something. I think autistic children feel their difference very powerfully. They don’t want to feel different, but they know they are. And a good community is one where these differences are talked about and embraced.”
Susan concurs entirely. “Inclusion doesn’t just benefit the individual, it benefits a whole community. I know many families who have organised their child’s bar or batmitzvah on their own. With the right training and links to autism charities, many synagogues could do more to facilitate inclusion in Jewish communal life — and the community as well as the individual Jewish child would gain enormously.”
