Easing The Autism Stigma

Community ramping up efforts to address growing needs of families.
Carolyn Slutsky - Staff Writer
http://www.thejewishweek.com/news/newscontent.php3?artid=14322

When Matthew Nadler sang his bar mitzvah portion, the Hebrew rang clearly through the air and no one in the sanctuary could keep from crying. Matthew stood on the bima, confident, pitch-perfect and proud, “a real mensch,” as his father, Allen, later described him.

But after the service, Matthew and his family didn’t adjourn to the typical party full of teenage friends and food.

Matthew has autism and, now 15, looks much younger. Though the handsome, blue-eyed teen is quick to pick up a dropped pencil, offer a drink or say “thank you,” he has trouble making eye contact, conversing or fitting into many social situations, and as a result finds it difficult to make friends with peers his age.

For Matthew’s parents, the shock of his diagnosis quickly turned to education for themselves and their son. They found the best services and became advocates for autistic children, ultimately, accepting Matthew’s limitations while embracing the joy he brings them.

“Like a poker game, this is the hand I was dealt,” says Allen Nadler of his son’s autism. “But unlike a poker game where I could fold my hand, this is a hand I have to play.”

Matthew Nadler is part of a rapidly growing population in the New York metropolitan area and throughout the country with autism, a diagnosis that has been exploding in recent years and is estimated to affect approximately 1 in 150 children in the United States today, according to the Centers for Disease Control and Prevention.

Autism is a spectrum disorder, which means it affects everyone differently along a continuum of symptoms. A developmental disability, it is characterized by repetitive behaviors, a failure to connect with others and language problems. Symptoms usually appear before the age of 3, often in children who until that point were developing language and social skills typically, a backsliding that can be particularly devastating to parents.

Last April during National Autism Month, media sources from Oprah to MTV to The New York Times covered autism’s growing impact on children and their families, and the puzzle-piece logo designed by Autism Speaks, an advocacy group, has been featured everywhere from celebrities’ lapels to highway billboards. The disorder has also garnered a slew of national financial support, with the federal Combating Autism Act, signed into law last December, allotting $945 million over five years toward autism research and screening.

The Jewish community recently followed suit in the national trend, ramping up efforts to understand and support families struggling with autism. The UJA-Federation of New York published a study, “Autism: A Call to Further Action,” to increase communal response to families, as well as targeting more than $820,000 toward autism programs in the New York area for the 2006-2007 fiscal year, a 60 percent increase over last year’s spending. The federation also has created an endowment for families, and UJA-Federation programs and others in the area are working with autistic children, their siblings and the rest of their families to try to include them in the larger Jewish community and make Jewish life accessible.

For many Jewish families, an autism diagnosis can lead to more questions than answers.

When Amy Greenberg’s daughter Hannah was 18 months old, Greenberg’s father banged a pot near the toddler, who didn’t respond. At first the family thought Hannah might be hearing-impaired, but a series of tests revealed a form of autism, an uncommon diagnosis for girls, in whom autism is four times less likely to occur than in boys.

Life with Hannah, who is now 9, is a series of uncertainties. Hannah understands language but cannot speak, and her frustration often leads to public crying and a feeling her mother describes as being trapped in her own body.

Greenberg would like to involve Hannah and her family more deeply in synagogue life, but feels Hannah’s behavior precludes full participation in the Jewish community.

“I can’t take her to temple; she’s going to have an outburst and interrupt the rabbi,” says Greenberg, who lives on Long Island. “I don’t think it’s fair to congregants if a kid is lying on the floor having a tantrum.”

Roberta Leiner, managing director of UJA-Federation’s Caring Commission, agrees that in families with autistic children the autism community can sometimes replace the Jewish community as the place parents turn to for support.

“Parents have said I’ve felt outside the Jewish community and stigmatized,” says Leiner. “Now the Jewish community is rising; we have an obligation to be as inclusive as possible.”

Autism is a confluence of genetic and environmental factors with no hard-and-fast diagnosis but rather a series of symptoms that an astute clinician must recognize. Doctors and researchers in the field agree that early intervention is important, and that in some cases a prognosis can be improved through early, intensive therapy.

Dr. Norman Doidge, author of “The Brain That Changes Itself,” writes about neuroplasticity, the idea that the brain is a constantly changing organ whose function can be altered.

“We used to think that everyone’s brain was hard-wired ... But now we are finding that the brain works by changing its structure: every time we learn, the microscopic structure of the brain changes,” says Doidge.

Though Doidge is optimistic about the potential for “brain plasticity” research to help with autism, he cautions that no cure or even a full understanding of the complex system of traits and brain chemistry is on the horizon.

For autistic people like Matthew Nadler, social situations are the most frustrating. When he is alone, Matthew will “stim,” a behavior found in autistic people that calms them or shuts out unwanted stimuli. He will touch everything with his hands instead of looking with his eyes, and will cover his ears at loud noises. This fall he will attend a special public high school near his home in the Whitestone section of Queens where he will learn life skills like shopping, traveling and job training, with the hope that when he reaches adulthood he will be able to care for himself.

Matthew also participates in CAP Connects, a program at the Samuel Field YM&YWHA where he meets other children with autistic spectrum disorders and where his parents confer with medical professionals and counselors to learn the latest information about autism advancements.

At the JCC of Mid-Westchester, Sibshop, a branch of a national program, brings siblings of children with special needs together so they feel less alone with the challenges of developing typically in a family where a sibling needs so much extra support.

For Howard Shuman, Sibshop has been a refuge for his daughter Rachel, whose twin sister Rebecca and older brother Jonathan are autistic. Rachel can take a leadership role there, where at 16 she is among the oldest, and it is a comfort for her to have an activity all her own, as her brother and sister have always been in special classes, lessons and treatment.

When Shuman and his wife Joelle’s children were first diagnosed with autism, applied behavioral analysis (ABA) was just starting to be popular and the children benefited from intense therapy and from positively reinforcing desirable behaviors. They both had bar mitzvahs: Jonathan’s in a small chapel where he read the service and gave a dvar Torah, while Rebecca shared a bat mitzvah with her twin sister.

Though the Shumans were grateful to find Beth El Synagogue Center in New Rochelle, where the rabbi is committed to making Judaism accessible to everyone, Howard Shuman worries that as autistic children and those with other developmental disabilities age, the Jewish community lacks enough opportunities for them to socialize. He also ponders what will happen when he and his wife are not around to look after Jonathan, now 18, and Rebecca.

“This is the kind of thing where the Jewish community may be useful,” he says.

For the Greenbergs, the Sid Jacobson JCC on Long Island has been a haven with its many activities for children with developmental disabilities and their families. Hannah participates in the Sunday respite program, and the JCC also runs a Saturday night social program where autistic people aged 10-21 can socialize and afford their caretakers a much-needed night off.

For parents, along with the frustrations and disappointments autism brings, they say their children are also touchstones for them and should be for the larger Jewish community, which benefits from meeting them where they are in a spirit of inclusion.

“He’s what the world should be; he doesn’t see black, white, Jewish, Catholic, he doesn’t see any of that, everyone’s equal,” says Allen Nadler of Matthew. “I don’t know what his lot in life is; it’s really too early to tell. He does have ideas, he says ‘I want to be a daddy, I want to be a teacher.’

“I don’t know if he can do these things,” Nadler says, “but I’m not going to tell him that. I hope the community will accept him whatever he’s going to do.”