Aspies For Freedom

The jury is also still out on whether autism is more prevalent in the Jewish community than in the population at large. Robert Bloom, executive director of Jewish Child & Family Services, cites studies that show that the highest incidence of autism currently is in upper-middle-class Jewish families.

"It's a strange finding-the incidence of autism goes up with affluence," Bloom says. "My guess is that the community is more sophisticated and more attuned to these disorders, and since Jewish families are very school-centered, they are forced to identify it early" since the disorder interferes with learning and school performance. He also believes that Jewish families "might go to autism experts, where others might go to a general pediatrician," so the disorder is more readily identified.

The Rudins took Kenny to their pediatrician, who first told the family they "had nothing to worry about," then, after thinking it over, suggested they consult a neurologist. That doctor "didn't use the word autism," Rudin says, but diagnosed Kenny as having PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified), a term sometimes used for autism in the past. When Debbie Rudin looked the term up in a book, she found the dreaded word. "I saw the future flash before my eyes; I was hysterical," she says.

Eventually "we took Kenny to five or six neurologists, pleading, one of you tell us he is NOT on the (autism) spectrum," she says. "We couldn't even say the world autism. It was like a horrible dirty word. We told our family, but said don't tell anybody. What we were starting to go through was a grieving process, like a death. Our hopes and dreams for our son in that moment were gone. It was like the death of what is to be for his life. For 10 months, we were just in such denial, we couldn't even say the word, that he could be autistic."

Ellen Bronfeld is a nurse by profession, but for the last two decades, her full-time unpaid "job" has been as an advocate for autistic children and adults. Among other efforts, she has formed an advocacy group, called Best Futures, consisting of some 20, mostly Jewish families; has been active in Keshet, where she has served as president and is a longtime board member; and with several other women set up an online group and informational forum, Illinois Parents of Adults with Developmental Disabilities Unite. She currently is active in advocacy efforts for adults with disabilities, often traveling to Springfield, along with her son Noah, to lobby legislators on disability issues.

Bronfeld's career in advocacy began out of necessity, she says, when Noah was in nursery school. He had been diagnosed as autistic at 22 months. "I was pretty laid back for the first couple of years," she says. "He was little, very quiet, undemanding." Then, when Noah began nursery school, "I felt he needed to be with other, typical kids," Bronfeld says. "Even though he wasn't interacting with them, I thought the verbal and behavioral models would be critical for him."

She enrolled him in a nursery school program and thought everything was going well until the director of the school called her in and told her that Noah "doesn't really belong here. I was shocked and devastated," Bronfeld says. "But I didn't know enough to advocate. I walked out, I pulled him out, I didn't know how to do otherwise. That was the pivotal point in my career as an advocate. It was a wakeup call. That woman did me a big favor, although she didn't know it."

After that "I got on the Internet, I talked to people, I asked a teacher, what do you recommend parents do? She said, the single most important thing is to get involved at every level. Join everything, be on committees, get active in your community, in disability awareness. You've got to be a part of the system, put yourself out there, be willing to do some work. It isn't going to be done by anyone else." Bronfeld took her advice-in spades.

Today, she believes, Noah's life is better for her efforts and those of other parents, including a group of mostly Jewish families who met when their children were little and formed close bonds that continue to this day.

Noah is 21 now; Bronfeld describes him as "a wonderful young adult" who nevertheless needs close, "24/7 supervision. He is relatively non-verbal, can't drive, you wouldn't even want him to be crossing the street on his own. There are safety issues."

But if Noah's and the family's life is relatively settled now, that hasn't always been the case. Like many autistic children, Noah had sleep problems and seldom sleeps through the night. He was not urine-trained until he was 12 and bowel-trained at 14, and there were times when "he would bounce off the ceilings," Bronfeld says. "He tore all the books in the room off the shelves. He would be screaming, have a meltdown. Plenty of people were afraid of Noah when he was little. He tried to hit infants in the head. He pulled hair, kicked, bit, had a lot of aggressive behavior." In a reversal of what usually happens with autistic children, Noah became calmer once he entered puberty.

Bronfeld says that "part of the mission is to get the word out that families can survive this. It ain't easy. There were weeks my husband spent living in the basement, because he's a trader and he can't survive without sleep. There were some nights when my husband looked at me and said, I'm going to have to leave, I can't take it."

I could not get the link to work.

LIVING WITH AUTISM: Three Chicago Jewish families tell their stories
By Pauline Dubkin Yearwood (08/10/2007)
Noah Bronfeld, who works five mornings a week doing maintenance at his synagogue, performed so well that the synagogue plans to expand his position.

Kenny Rudin went to a three-day overnight camp this summer and was so excited to see his younger brother when he returned that he "was running laps around the house," in his mother's description. (His brother was excited too.)

Marc Summerfield is looking forward to starting high school this fall at Ida Crown Jewish Academy and expects the students there to be as friendly and welcoming to him as they were at his previous school, Solomon Schechter Day School.

Nothing earth-shaking here, but all three scenarios represent small victories. And for the Bronfelds, the Rudins and the Summerfields, as well as hundreds of other Jewish families like them, even small victories are big ones. That's because Noah, Kenny and Marc have autism.

It's no longer shocking to read those words. In recent years, autism seems to be everywhere, from Oprah Winfrey's show to The New York Times to TV's morning programs to magnetic ribbons on cars. Last year a federal Combating Autism Act allotted $945 million over five years for autism research and screening. Almost everyone in America who watches the nightly news knows that what was once considered a rare and poorly understood disorder is still poorly understood, but no longer rare.

Reports of autism cases grew particularly dramatically in the United States between 1996 and the present, and today the disorder is estimated to affect 1 in 150 U.S. children, according to the Centers for Disease Control and Prevention. (In the 1980s, the figure was 1 in 1,000.) Experts disagree on whether the huge spike represents an actual increase in cases, better diagnostic procedures, or a combination of both.

The jury is also still out on whether autism is more prevalent in the Jewish community than in the population at large. Robert Bloom, executive director of Jewish Child & Family Services, cites studies that show that the highest incidence of autism currently is in upper-middle-class Jewish families.

"It's a strange finding-the incidence of autism goes up with affluence," Bloom says. "My guess is that the community is more sophisticated and more attuned to these disorders, and since Jewish families are very school-centered, they are forced to identify it early" since the disorder interferes with learning and school performance. He also believes that Jewish families "might go to autism experts, where others might go to a general pediatrician," so the disorder is more readily identified.

Whatever the reasons, the prevalence or the cause, autism is a devastating, life-changing diagnosis for a family to receive.

Debbie Rudin, Kenny's mother, vividly recalls that when her son's autism was first diagnosed, when he was a little over 2, "we couldn't believe what we were hearing-that he was autistic. That word, I only knew it from the movie 'Rain Man,'" in which Dustin Hoffman played the most famous autistic person in cinema history.

Rudin poignantly recalls that before Kenny was born, she would drive by a special education district school on the way to a relative's house and think, "That's too bad, that there are kids with special needs, that's horrible."

When Kenny was born, there was no indication anything was wrong. He passed all his developmental milestones, then-in a scenario typical of many autistic children-at about 19 months, he began regressing. He stopped responding to his name, started spinning in circles (repetitive behavior often seen in autism) and seemed to gravitate obsessively to a certain spot outdoors, where he would look at the sunlight through his fingers, over and over, his mom says. "I wasn't sure where he was," Rudin says. "You're looking for your child in there."

Still, she and her husband, Scott, clung to the hope that "whatever it was, I was sure it could be fixed." But Rudin had an epiphany of sorts when she took two-year-old Kenny to see an ice show along with a relative's child of the same age. "She said, 'Kenny doesn't talk much, does he?'" Rudin says. "It was so weird that a little girl would notice that. When she said that, I couldn't get it out of my mind. I'll never forget that moment."

The Rudins took Kenny to their pediatrician, who first told the family they "had nothing to worry about," then, after thinking it over, suggested they consult a neurologist. That doctor "didn't use the word autism," Rudin says, but diagnosed Kenny as having PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified), a term sometimes used for autism in the past. When Debbie Rudin looked the term up in a book, she found the dreaded word. "I saw the future flash before my eyes; I was hysterical," she says.

Eventually "we took Kenny to five or six neurologists, pleading, one of you tell us he is NOT on the (autism) spectrum," she says. "We couldn't even say the world autism. It was like a horrible dirty word. We told our family, but said don't tell anybody. What we were starting to go through was a grieving process, like a death. Our hopes and dreams for our son in that moment were gone. It was like the death of what is to be for his life. For 10 months, we were just in such denial, we couldn't even say the word, that he could be autistic."

Eventually, the Rudins accepted the diagnosis and began seeking help for their son, including one-on-one work with a therapist at Northwestern University's child development program. Rudin realized that the program was working when she noticed that an occupational therapist "was engaging him, getting his eyes to look at her. He was being responsive. He was on a swing and was basically saying, I want more. I was like, oh my god, she's getting him to communicate. That was the beginning."

Another therapist "opened up a whole world of autism," Rudin says. "Web sites, books-this is what you're supposed to be doing." Although doctors often tell parents of autistic children "there's not much you can do," Rudin disagrees. "There is a lot you can do," she says. "You try and help your child reach their potential, every day throughout their lives."

Kenny is now 12 and the family also includes David, 9, a "typical" child-the term many families and professionals use to supplant older, loaded words like "normal." "They are great brothers," Rudin reports. "They love each other very much." When the boys returned recently from different overnight camping experiences, they couldn't wait to see each other, she says.

The Rudins, meanwhile, have become deeply involved with Keshet, an agency for Jewish families of special-needs children that offers many services for autistic children, including the camp that Kenny attended this summer. "He had the best time ever," Rudin reports. "I was nervous to let him go. We have good days and days that are very hard. I worry about him when he's not with me." But Kenny, who uses special software, "wrote a letter: 'I just love camp. Can I go again?'" It also gave the Rudins some precious time to spend one-on-one with David.

Today, Rudin describes Kenny as "the hardest working boy in show business. When you have autism, you're not able to filter things out, your system is so miswired. Things are too much-talking, noise. It's a very confusing world when you're going through the world like (autistic people) are. It's a struggle for Kenny just to get through the day sometimes."

Kenny "communicates with a little bit of language-there's nobody better at asking for a pretzel or a cookie than Kenny," but it is difficult for him to use his voice, Rudin says, so he uses a "talker" instead that forms words for him. Not being able to talk when everyone else around him is conversing is very difficult for Kenny, she says: "It would be like having tape over your mouth." Sometimes in a store "he gets frustrated and hits himself in the head, and it looks scary," she says. "I'll get that look (from other people) with their perfect child, and I'll think, he is my perfect child."

Despite the optimism, Rudin says her family's days are often difficult. "I live hour to hour, day to day. Everything is planned out, the schedule for the day, there can't be any bumps in the road. Everything has to be mapped out, planned out, organized and ready. It's very different" from what most families experience, she says.

And then there are the worries, voiced almost universally by parents of autistic children, about the future. "Kenny is going to be an adult, and what is going to happen?" Rudin says. "I don't know. We have no idea. It's a scary place to think about. Who will protect him? We don't want David to feel like he has to. We have to live forever."

Ellen Bronfeld is a nurse by profession, but for the last two decades, her full-time unpaid "job" has been as an advocate for autistic children and adults. Among other efforts, she has formed an advocacy group, called Best Futures, consisting of some 20, mostly Jewish families; has been active in Keshet, where she has served as president and is a longtime board member; and with several other women set up an online group and informational forum, Illinois Parents of Adults with Developmental Disabilities Unite. She currently is active in advocacy efforts for adults with disabilities, often traveling to Springfield, along with her son Noah, to lobby legislators on disability issues.

Bronfeld's career in advocacy began out of necessity, she says, when Noah was in nursery school. He had been diagnosed as autistic at 22 months. "I was pretty laid back for the first couple of years," she says. "He was little, very quiet, undemanding." Then, when Noah began nursery school, "I felt he needed to be with other, typical kids," Bronfeld says. "Even though he wasn't interacting with them, I thought the verbal and behavioral models would be critical for him."

She enrolled him in a nursery school program and thought everything was going well until the director of the school called her in and told her that Noah "doesn't really belong here. I was shocked and devastated," Bronfeld says. "But I didn't know enough to advocate. I walked out, I pulled him out, I didn't know how to do otherwise. That was the pivotal point in my career as an advocate. It was a wakeup call. That woman did me a big favor, although she didn't know it."

After that "I got on the Internet, I talked to people, I asked a teacher, what do you recommend parents do? She said, the single most important thing is to get involved at every level. Join everything, be on committees, get active in your community, in disability awareness. You've got to be a part of the system, put yourself out there, be willing to do some work. It isn't going to be done by anyone else." Bronfeld took her advice-in spades.

Today, she believes, Noah's life is better for her efforts and those of other parents, including a group of mostly Jewish families who met when their children were little and formed close bonds that continue to this day.

Noah is 21 now; Bronfeld describes him as "a wonderful young adult" who nevertheless needs close, "24/7 supervision. He is relatively non-verbal, can't drive, you wouldn't even want him to be crossing the street on his own. There are safety issues."

Yet Noah leads a productive life. He graduated from public school in June, where he took special ed classes but also participated in some mainstream classes, and is now in a program that his parents, along with three other families, created with help from a state grant and from the Anixter Center, a large provider agency for people with disabilities. The program, in operation since 2001, serves 17 young adults and provides recreational services, health, fitness and socialization, with an emphasis on working in the community.

That's the second part of Noah's life: He has a job at his family's synagogue, Northbrook Congregation Ezra-Habonim, and Bronfeld has nothing but praise for Rabbi Peter Mehler. "I went to my synagogue and said, Noah needs a job," she says. "They worked with us very willingly."

Noah works five mornings a week, making minimum wage, cleaning the classrooms and kitchen, vacuuming and taking out garbage. "He loves to schlep, that's one of his favorite things," Bronfeld says.

"People in the synagogue have been beyond wonderful," she says. "They're going to start looking at expanding the job. (Noah) is doing real work. It's a point of pride for him. He takes pride in it."

Bronfeld takes pride as well in her husband, Asher, whose job as a trader allows her to perform her advocacy work without worrying about a paycheck, and in their other son, 23-year-old Jordan, a graduate student. Bronfeld relates that when it was time for him to choose a college, he selected the University of Illinois over more expensive Northwestern because he knew the family had extraordinary expenses because of Noah. Jordan took his brother on a celebratory road trip when Noah turned 19 and took him to visit him at college. Noah "has one of the best brothers on the planet," Bronfeld says.

But if Noah's and the family's life is relatively settled now, that hasn't always been the case. Like many autistic children, Noah had sleep problems and seldom sleeps through the night. He was not urine-trained until he was 12 and bowel-trained at 14, and there were times when "he would bounce off the ceilings," Bronfeld says. "He tore all the books in the room off the shelves. He would be screaming, have a meltdown. Plenty of people were afraid of Noah when he was little. He tried to hit infants in the head. He pulled hair, kicked, bit, had a lot of aggressive behavior." In a reversal of what usually happens with autistic children, Noah became calmer once he entered puberty.

Bronfeld says that "part of the mission is to get the word out that families can survive this. It ain't easy. There were weeks my husband spent living in the basement, because he's a trader and he can't survive without sleep. There were some nights when my husband looked at me and said, I'm going to have to leave, I can't take it."

That didn't happen, and today "the good times hopefully outweigh the bad or equal them out," Bronfeld says. "The families who cope best have to have a little black humor. You have to be able to smile at the end of the day and have a sense of optimism about life. Families struggle with a lot of challenges but the strength, humor, love and support gets you through it."

For the Bronfelds and countless other families, the Jewish community provides an array of services for children with autism. Keshet, where the majority of students receiving services are on the autism spectrum, offers a K-12 day school, a transitional program, summer camp for ages 4 through 21, Sunday school, choir, winter camp programs, Special Olympics, Buddy Baseball program, art therapy, physical therapy, speech and occupational therapy, access to social workers, music therapy, dog therapy and a drama program run in conjunction with Chicago's Lookingglass Theatre. Several hundred children and young adults with autism take advantage of the various programs, according to Lisa Rosenberg, director of the Northbrook Keshet Day School and the unofficial autism specialist for the agency.

In all of its programs, Rosenberg says, the agency follows the TEACCH (Treatment and Education of Autistic and Related Communication-Handicapped Children) philosophy developed by the Department of Psychiatry and School of Medicine at the University of North Carolina at Chapel Hill.

The basis of that philosophy, Rosenberg says, is "to teach every child to be as independent as possible for that specific child. It is very individualized and could be very different for every child. It is the cornerstone of the approach that we take at the day school and what separates our program from some others-that every child is an individual." With no more than five to eight students in each classroom, children get "one-on-one time" with a teacher daily, she says.

TEACCH, she adds, "is a program that respects the culture of autism. It's not that old-fashioned behavior modification thing of 'how do we change that child?' Rather, it's about changing the environment to make the kid more successful." In addition, she says, "We look at our families as part of our team. It's extremely important to include the parents in decision making."

Jewish Child & Family Services also has many programs for children with autism, including the JCFS Early Childhood Autism Academy in Northbrook, a therapeutic preschool for children ages 3 to 6; an early intervention program; respite programs for families with autistic children of all ages; a therapeutic day school that includes autistic children as well as others with developmental disabilities in 6th grade through high school; and Camp Firefly, a program for autistic children ages 8 to 12. There's also the Yad b'Yad program, in which the agency partners with Hillels and university students to work with Jewish youths with autism and other developmental disabilities. Altogether the agency serves several hundred children and youths on the autism spectrum.

But it's not enough, Bloom, the agency's executive director, says.

"More and more, there is a tremendous need for" such programs, he says. "We are trying to tool up for that. There's almost nothing for after school, although more and more schools are developing full-day programs for these kids." Even more summer programs are needed, he says, since when they're not in school, "these kids are 24 hours." When the agency secured additional funding for 20 individuals for its respite program, "we immediately had 20 (more) on the waiting list. The need is endless," he says.

There is also a pressing need, Bloom and others admit, for services for adults with autism, including possible living arrangements. "There's nothing out there," he says. "But right now we're not even thinking about it. We're trying to develop some things for college age. They kind of fall off the end of the world when the public sector is no longer responsible." In addition, according to experts, Illinois ranks in the bottom three states in providing services to the developmentally disabled.

Yet, Bloom says on a more hopeful note, services for persons with disabilities is one of the two top priorities of the Jewish Federation of Metropolitan Chicago, of which JCFS is a part. "We've just begun to scratch the surface, but we add a little every year," he says.

Felice Summerfield agrees that services for adults with disabilities are sorely lacking in Illinois, but she hopes that might change by the time her son Marc, 14, is ready for those services.

Like other parents of autistic children, Summerfield says that the diagnosis, made when Marc was about 2, was devastating for her and her husband, Craig. "You realize your child is not going to develop like typical kids, and it's a terrible realization at the time," she says.

Today, "we've come a long way," she says, and there have been many positive experiences for Marc, who Summerfield describes as in the mid-range of autism. He has good daily living skills-he can dress himself, eat by himself, he does chores and often helps his mother cook-and while he can speak, "he doesn't use (words) to communicate in a social way," Summerfield says. "You have to push conversation out of him."

But, she adds, "he is a very pleasant child, very sweet, very nice to be around, and he is pretty flexible in what he'll do with us-he goes shopping, to the movies, to recreational activities. It's taken a lot of years to get to that point." The family also includes daughter Marni, 16.

The Summerfields' experiences in the Jewish community have also been positive, Summerfield says. Marc attended Keshet Day School, which is located at Solomon Schechter Day School, and was integrated into a number of mainstream classes and activities. "The kids at Solomon Schechter have always been extremely welcoming and accepting of Marc and other children," Summerfield says. "It's a wonderful environment."

In the fall, he will begin taking classes through Keshet at Ida Crown Jewish Academy, and Summerfield says, "I believe it will be the same type of thing at Ida Crown. I've heard the kids are also just as welcoming."

Last year, Marc celebrated his bar mitzvah at Congregation Beth Am in Buffalo Grove. "My daughter had a bat mitzvah, so you would hate not to have one for him," Summerfield says. "The synagogue was very flexible and willing to help. We had it on a Friday night as part of their family service, a shorter service, and it was really wonderful. I taught Marc the Torah blessing. He's a good reader, I transliterated it and taught it to him. We had friends and family with us for the service and had an Oneg afterwards.

"I never thought we would be able to do it," she says. "I was so wired. But he did it, and we felt he was really happy about it."