Autism: the pain and the progress
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On Yom Kippur of 1996, Albert Enayati saw fellow congregant Sara Lee Kessler walking to Cong. Ahavath Torah with her husband, Robert Miller. He had never met her – he belonged to the Englewood synagogue’s Sephardic minyan – but he recognized her face. Kessler, an award-winning broadcast journalist, was then the new health and medical correspondent for New Jersey Network.
Mustering his courage, Enayati approached Kessler and asked her to consider doing a segment on his autistic 7-year-old son, Payam. “Maybe because of the Jewish holiday she couldn’t say no to me,” he recalls thinking.
Enayati was then president of the state chapter of an autism advocacy organization seeking government funds to establish a gene bank for autism research. “I was hoping she could help us get publicity. I explained that autism is pretty devastating and consumes your life. It affects everyone in the family.”
Payam, on the severe end of the autism spectrum, was difficult to control. He would dart out of the house, into traffic, start fires, and have great difficulty sitting still in school.
“I promised Albert that I would do a ‘Healthwatch’ story about Payam and I became so interested in autism that I’ve been reporting on it ever since,” says Kessler.
Her work over the past 14 years has culminated in an hour-long documentary, “Decoding Autism,” to air on NJN1 Sept. 27 at 9 p.m., Oct. 3 at 4 p.m., and online at www.njn.net. Kessler reported, wrote, and produced the piece.
“Autism spectrum disorder” describes a range of neurodevelopmental conditions that affect a child’s language development, social skills, and often IQ. Children with autism commonly have heightened sensitivity to touch and noise and display a range of behavioral abnormalities. (See sidebar.)
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Jake Weinstein, SINAI’s associate director, stands with a student, on the autistic spectrum, being called up to the Torah at school upon the occasion of his bar mitzvah. Courtesy Sinai |
With one out of 110 American children now being diagnosed with some form of autism, and one out of 94 in New Jersey, it is widely considered “the No. 1 childhood health issue in America today,” in the words of Mark Roithmayr, president of Autism Speaks. Kessler set out to find what is driving this alarming trend.
She visited the labs of top autism researchers, interviewed families, and talked with educators using early intervention techniques such as applied behavior analysis (ABA). Progress is being made as various theories are tested, but for now there is no clear cause or cure.
What is clear is that autism – or “the autisms,” as one of the experts puts it – knows no racial, cultural, or economic bounds. It is not a Jewish disease. Yet Jewish families affected by the disorder face unique challenges. How can they integrate a child into the Jewish community who cannot be educated in a Jewish setting and cannot attend synagogue services? How can they make a bar or bat mitzvah?
“Part of what gets people involved in the practice of Judaism is the rituals, and that’s a huge problem for an autistic child,” says Lisa Fedder, executive director of Jewish Family Service of Bergen and North Hudson, which runs a weekly program for young working adults with Asperger’s syndrome, an autism spectrum disorder affecting social skills but rarely intelligence.
“Someone on the high end of the spectrum can learn to read Torah and may even be skilled at it, but part of how we celebrate [b’nei mitzvah] is being part of a community: Hebrew school, prayer service, and celebration. Without those markers, the community has no way to engage you.”
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Bassie Taubes says that “kids at TABC are great” to her son, Yosef Dov, who attends the SINAI branch there. |
Bassie and Rabbi Michael Taubes of Teaneck prepared carefully for the bar mitzvah of their autistic son, Yosef Dov, two years ago. “We worked with a behaviorist and wrote a social story with a brief narrative to describe what the day would be about,” says Bassie Taubes.
(A social story is a tool for teaching social skills to children with autism and related disabilities. It provides detailed information about situations that a child may find difficult or confusing.) The story explained to him, his mother said, “that there would be a lot of people and noise, and people may want to touch him, and how he could stay calm.”
In Cong. Tzemach Dovid, his father’s synagogue, Yosef Dov was called to the Torah and was honored after services at a kiddush. That Saturday night, his family threw a party whose guests included client families and volunteers from the Paramus Friendship Circle – a Lubavitch program that recruits teens to interact with special-needs children in their homes.
“That day was a highlight of his existence,” says his mother. “It’s rare for kids with autism to be celebrated. He talks about his bar mitzvah all the time.”
Yosef Dov’s aunt, Esther East, is executive director of Jewish Family Service of Greater Clifton-Passaic. “I know many Jewish families with autistic children, who can be anywhere on the spectrum from pervasive developmental disorder to Asperger’s syndrome,” she says. “Like any child with special needs, [a child with autism] has an enormous impact on the family – stress on the parents, confusion until a diagnosis is established, uncertainty about prognosis, lack of adequate educational resources within the Jewish community, extraordinary financial demands for education and treatment, long-term care issues.”
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Reporter Sara Lee Kessler with teens at The Children’s Institute, a school in Verona, for children on the autism spectrum. From left are James S., Natalie C., Emily V., and Philip C. |
Last year, her JFS hosted a day of presentations for parents and professionals by Dr. Ami Klin of the Yale Child Study Center, an international expert on autism who appears in Kessler’s documentary. “Everything he said was memorable,” recalls East, “but I think the most poignant and significant message he had for parents was the necessity of creating opportunities in life within the reality of their children’s capacity – opportunities to live life to the fullest and most independent quality.”
One of the parents who came to hear Klin was “Vivian,” a Passaic County mother of a 9-year-old severely autistic boy. When “Baruch” was officially diagnosed as autistic at 2 1/2 at the Institute for Child Development at Hackensack University Medical Center, his parents assumed he would eventually be able to go from public school to a yeshiva, “even if not the same yeshiva our other kids attend. But he’s still not in a yeshiva and I don’t know that he ever will be.”
Vivian has not found a Jewish school that could offer Baruch the one-on-one intensive services he receives at a private school in Maplewood whose director, Dr. David Sidener, was interviewed for “Decoding Autism.” Another Orthodox family has two sons in the school.
Baruch cannot go to shul with his siblings and peers. “I can’t see taking him into services because there’s no guarantee he’ll be quiet, and if he went to the children’ groups he would need one-on-one attention,” his mother said. His only formal Jewish setting is a Sunday morning program, Jewish Education for Special Children, housed at the Rosenbaum Yeshiva of North Jersey in River Edge.
Rabbi Yisroel Schwab, director of JESC, said a fair percentage of the program’s 50 participants from ages 3 to 22 are on the autism spectrum. Some do not speak. All of them receive some form of prayer education, Hebrew reading, holiday projects, Bible stories, and music, as well as Jewish dance for the older kids. This skill helps them feel more comfortable at bar mitzvahs and weddings.
“We use a multi-sensory approach,” says Schwab, who has ABA training. “For instance, for a non-verbal child we teach ‘Torah’ as a sight word and later you might see him hugging a play Torah in music class. We do see results, but in small steps.”
Vivian recites the Sh’ma to her son every night with the hope that perhaps he’ll be able to say it himself by the time he’s a bar mitzvah. She believes Baruch strongly perceives the special atmosphere of the Sabbath and Jewish holidays.
“His favorite foods are cholent and kugel, though he’s not a great eater. I make them every week for him. He’s always drawn to watch the Shabbos candles and his favorite songs are Jewish songs. You just get the feeling he relates to things Jewish.”
Yosef Dov Taubes was the sole Orthodox child in his special-needs public school class when he was younger. His mother recalls the October day he came home from school with a pumpkin and begged his older sister to carve a face into it for him. “We were the only rabbinic family with a jack-o-lantern on Halloween,” she says with a wry laugh.
Since the age of 9, he has been one of the autistic children who make up about a quarter of the students at the SINAI Schools, a network of Jewish programs for special-needs children housed within day schools. He attends the branch at the Torah Academy of Bergen County in Teaneck.
“Kids at TABC are just great to him,” says Bassie Taubes. “They take him out to lunch and come over on Shabbos,” along with volunteers from the Friendship Circle. “He’s our youngest child – our other kids out of the house – and he doesn’t have the social network that other teenagers have.”
Dean Laurette Rothwachs says some of SINAI’s autistic students are mainstreamed for half the day. “But they need a lot of support because even if they are fine academically they can’t get through the rigors of communication and socialization. We have behaviorists on staff and where appropriate we use ABA methods.”
Several years ago, SINAI tried offering a self-contained program specifically for children with autism. But it could not meet New Jersey’s enrollment requirements for state funding qualification. “The costs were exorbitant and we couldn’t sustain it over time,” says Rothwachs.
Because SINAI works within mainstream schools, it is not appropriate for all autistic children, she adds. “If a student would be overwhelmed by that setting we cannot take them. They must be ready for that situation. We did take one child who needed a one-on-one behavioral therapist and is now completely integrated into our classes. We have started offering that to many more kids who we feel could benefit.”
There was no such alternative when Payam Enayati was young. “He is severely disabled, so there was no way to have him get a Jewish education,” says his father, “but he knows about going to shul.”
Enayati credits Ahavath Torah’s Rabbi Shmuel Goldin and former Sephardic minyan president Albert Allen for welcoming Payam, who now lives in a group home. “It was difficult to control him, but nobody got angry if he disturbed the services. He’d play with the curtain in front of the Torah ark and Mr. Allen was very understanding. Everyone made us feel welcome.”
After that Yom Kippur meeting in 1996, Kessler interviewed the Enayati family and other parents at Payam’s school. She also attended a hearing in the New Jersey legislature about funding for the Autism Genetic Resource Exchange at Rutgers, the nation’s first collaborative gene bank for the study of autism spectrum disorders.
“I imagine that was the first time a reporter talked about autism in the state of New Jersey, and we were so grateful because the legislation passed,” said Enayati. “And she didn’t stop there. When Gov. [Christie] Whitman was to sign the law, Sara Lee did another NJN piece that day, and she interviewed me.”
He believes Kessler’s reporting helped secure a later piece of legislation that established Rutgers as a “center of excellence” for autism research. In 2006, the New Jersey General Assembly passed a resolution lauding Kessler for her humanitarian efforts.
“The more I reported on autism and saw what a devastating disorder it was, and the struggle of people like Albert Enayati to create a gene bank, I could not turn my back on the issue,” she says. “He knew it was important to get past the emotions and look at the science. I wanted to do a documentary on it for years, but it took a long while to get the funding together.”
Kessler says she hopes “Decoding Autism” will raise awareness about autism spectrum disorders “and give real hope to families impacted by the disorder.”
The main advance she discovered is that scientists are now convinced autism is a brain connectivity disorder. “Everywhere I went, the brain was front and center. And gene research seems to support that theory.”
Autism experts now know that people who are autistic have larger brains, but they do not know how this contributes to the disorder. Others have found that brain signaling delays may be the cause of autism’s signature communication difficulties. Researchers are studying younger siblings of autistic children, believed to be at greater risk, to see whether the development of the disorder can be halted with proper intervention.
All of this may be academic for the families of older autistic kids like Payam and Yosef Dov. Autism generally does not disappear in adulthood. “We don’t know what the future will hold,” says Bassie Taubes. “That is the big question.”
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