April 15, 1999
Autism: The New Epidemic
Latest studies indicate possible genetic trend in Ashkenazi Jews
Barbara and Sheldon Helfing never expected to have one autistic child, much less two. Their son Leland, now 5, was born prematurely and began showing signs of a neurological disorder before reaching his 1st birthday.
"Leland had very poor balance and he wasn't yet responding to us with words or gestures," Barbara said. "But initially autism did not come up because he was clearly interested in his surroundings and in other people."
Leland began getting help through the state's Early Intervention Program. However, since the state agency did not require a diagnosis prior to providing services, the Helfings had no idea that their son's problem might be genetic. When Nathan was born, the Helfings rejoiced in their healthy new son, but by the time he was 18 months old, the heartbroken parents could no longer hide from the fact that their younger son had also fallen prey to the disorder.
The Helfings are part of a growing trend that is affecting the Jewish community in unprecedented numbers. The statistics most often quoted in past reports about autism state that autism spectrum disorders occur in four to five in every 10,000 births. However, according to the Autism Society of Los Angeles, a soon-to-be-released report on children in the state of California shows a 400 percent increase between 1986 and 1996 -- or one in every 500 births.
In terms of the Jewish community, a study being performed at Stanford University's School of Medicine is looking into how families of Ashkenazi origin are affected (see box). Researchers stress that so far there is no indication that Ashkenazi Jews have more of a tendency toward autism than the general population. However, professionals who work with autistic children say the overall increase in cases has had a definite impact on Jewish families.
"While I would not say the Jewish community is any more hard hit than other communities, we are certainly seeing plenty of Jewish families with this problem," said Dr. John Lutzker, chair of the department of Psychology and director of graduate training at the University of Judaism in Los Angeles. "I have contact with the (state-run) Regional Centers and with the school districts and they cannot put a lid on this. It is indeed an epidemic."
Dr. Sandra Kaler, a psychologist associated with the Neuropsychiatric Unit at UCLA, agrees.
"The Jewish community has been equally struck by this and I think there was an assumption we would not be," Kaler said. "Now when I go out to a Jewish preschool to do an evaluation, I frequently see one or two children with autism, where before it was very rare to see more than one."
Autism is a neurological disorder that typically appears during the first three years of life and includes disabilities or delays in the areas of social skills, communication and cognitive development. Children can either be born with the disorder or develop normally and then regress, usually between the ages of 18 and 24 months. It occurs four times more often in boys than in girls (one reason why scientists suspect a genetic link). About 70 percent of children with the disorder also show some degree of mental retardation. Autism is considered a lifelong disability, but with early intervention many children learn enough skills to lead independent lives.
No one knows for sure what has caused the skyrocketing numbers of children diagnosed with autism. Because of the gender bias and because so many families have more than one child with the disorder, several ongoing studies are focusing on the existence of a genetic link or mutation. Other scientists are examining environmental factors like diet, vaccinations and pesticide exposure.
Part of the rise in incidence may be attributed to a change in the definition of autism spectrum disorders. For many years it was easy to tell children who fit the classic diagnosis of autism: An inability to relate to others, poor or no speech, violent or self-injurious behavior, repetitive or seemingly meaningless activities. However, the diagnosis has evolved to include children who relate fairly well socially but who have delays in other areas like language or fine motor skills. (This is sometimes called pervasive developmental delay, not otherwise specified or PDD-NOS.) On the other end of the spectrum are children who have solid communication skills but find it difficult to relate to other people, sometimes becoming obsessed with a narrow range of ideas or objects, a disorder known as Aspergers Syndrome.
But Lutzker said the change in evaluations cannot completely explain what professionals are seeing in their offices.
"It's an interesting dilemma: Is it that we are more aware of autism or are there truly more incidents? I'm inclined to lean toward more incidents just because of the endless number of children we are seeing these days," he said.
Lutzker, a behavioral psychologist, is a strong advocate of the discrete trial training method of treating children with autism. Discrete trial training (also called applied behavior analysis or ABA), was designed by Dr. Ivar Lovaas of UCLA in the 1960s and uses behavior modification with both positive and negative reinforcement to shape the child's response. Other developmental professionals prefer using the newer "floor time" therapy. Created by Dr. Stanley Greenspan, a psychiatrist at George Washington University Medical School, this teaching method is child-directed -- the therapist follows the child's lead in playing games and performing activities that enhance the child's communication skills. Many autistic children also receive speech and occupational therapies.
Working out a successful treatment plan is one of the many battles that parents such as the Helfings find overwhelming at times. Both their boys have different strengths and weaknesses and each requires a program that supports their needs. Therapy, including a home-based ABA program for Nathan and Greenspan sessions for both, often takes up eight or more hours a day for each child. Ironically, both Barbara and Sheldon's professional training makes them well-suited to the task of raising children with special needs; Barbara has a Master's degree in education (including a credential in special ed) and Sheldon teaches psychology at local community colleges.
Barbara said the hardest part is dealing with family and friends who don't seem to grasp what life with autism is all about, the constant toll taken on the family's time and emotions and finances as they research every option for helping their sons. She tells the story of a friend who called up in tears because her daughter had missed out on getting into a gifted class by two points on a test. Barbara said it was hard not to laugh because "I wish for one moment that Leland or Nathan had a problem like that!"
"What it comes down to is our kids are in a perpetual toddlerhood," she said. "Their mental age is not where their chronological age is; that's what makes it more taxing for us as parents. Other parents spend a lot of time talking about their kids' accomplishments and what we talk about may not seem like much. But the things other people take for granted, we really appreciate."
The family has struggled to find their place in the Jewish community. Currently they are not affiliated with any synagogue. Barbara said when Leland was a toddler she joined a Mommy & Me class at a large Conservative temple, but was disheartened by the response of other mothers when Leland finally attempted to speak.
"He was vocalizing, making these sounds that weren't quite words, but it was the first time he had even tried to talk," Barbara said. "And I saw two mothers pull their children away from him, like it was contagious. Instead of applauding that this child was finally speaking, they reacted like he had a disease."
To add insult to injury, when Barbara called to tell the teacher she and Leland were leaving the class, the teacher asked if she could tell the other mothers that Leland was a special-needs child unsuited to the program. Barbara said the feeling she got from the experience was that children who were different posed a threat to the reputation of the highly touted, "academically enriched" program. The rejection, she said, still hurts.
Sheldon is quick to point out that not all the family's experiences with synagogues have been negative.
"There are some good programs out there," he said. "But the general population reacts from fear -- what you don't know might hurt you. The misnomer about autistic kids is that they're crazed and violent, when in fact they are so locked inside themselves they would not hurt anyone."
Dr. Bryna Siegel, author of "The World of the Autistic Child," has seen many Jewish parents during her tenure at both Stanford and the University of California at San Francisco. Siegel, who is Jewish, said the emphasis on education and the high expectations of parents and grandparents in our culture makes it more difficult to accept a diagnosis of autism.
"The problems Jewish families have in coping with autism is by and large what I see in most well-educated, upper middle-class families," Siegel said. "There is a much greater sense of disappointment in having a child with a disability as opposed to a working-class family. And there isn't as much room in the Jewish community for these children as, say, in the Mormon community where they are seen as a chance for family members to grow spiritually through love and compassion. Judaism really doesn't have an outlook like that."
Siegel said that in some cultures where large families predominate, having a special needs child is less of a burden because the work can be shared among more people.
"But except for the Chassidim, Jewish families are not having a lot of kids. For those families, this child may be their only one, and that can be hard," she said.
The Los Angeles Jewish community has been slow to respond to the recent surge of families with developmentally delayed children. Few programs exist to teach these children Jewish culture and values. In the San Fernando Valley, there are special needs programs at Valley Beth Shalom, Temple Judea and Kol Tikvah, but except for VBS, these programs are limited to a few hours one or two mornings a week. The standards of admission for Jewish day schools such as Abraham Joshua Heschel, automatically eliminate many children with disabilities, including autism. Other schools will only take an autistic child if a one-to-one aide is provided, which may be out of the financial range for parents already pushed to the limit by medical treatments.
The University of Judaism, however, recently established a Master's degree program for people interested in working with autistic and abused children, which will put more knowledgeable, appropriately trained teachers out in the Jewish community. For those already in the field, the Bureau of Jewish Education, at its recent Early Childhood Education conference, hosted a seminar on Autism and Aspergers for educators along with several classes on evaluating children for speech and language delays.
But the Helfings' best advice to other parents of autistic children is this:
"Know your child, their strengths and weaknesses," said Barbara. "Know the law, or hire someone who does. The truth is, in a situation like this the playing field is not even. To the degree you're informed about your child, the disorder, what resources are available and about your rights is the degree to which you will be able to help your child succeed."