By Manny Frishberg, JTNews Correspondent
When Eitan Rind was a toddler, just 18 months old, his mother knew something was not right: Eitan was simply not acting the way her two older children had. He did not make eye-contact the way babies normally do. He was uninterested in the world around him and he stiffened when he was touched or held.
Although he was exhibiting the classic signs of autism, it took her nearly another year and a half before she could get a doctor to confirm that diagnosis. In those days, there was little information on the condition and hardly any support for a parent who had gotten the terrible news. Even when children were diagnosed correctly, there was no hope of a cure and almost no one knew what treatments would provide any hope of help.
Since that time, says Barri Rind, things have gotten better and worse. There has been a growing awareness of autism among medical professionals and the wider society. Some breakthroughs in therapies have occurred, allowing people to begin to make a difference in the lives of even the most severely affected children. At the same time, there has been an explosion of cases, and no one is sure why.
One thing that has changed is that in 1994, a group of concerned parents founded the National Association for Autism Research, the first organization dedicated to raising money and awareness for biomedical research into the causes and possible cures for autism-related conditions. Since then, Barri Rind says, the need has only been increasing.
“Eight years ago,” says Rind, “the literature said that one in 10,000 kids was diagnosed with autism. Today, one in 250 kids is diagnosed with autism, so the numbers have risen exponentially. We call it an epidemic. Scientists look at it and say, ‘Well, what’s going on? Why do we have so many kids with autism?’ In truth, it affects all ethnic backgrounds, all socioeconomic levels,” she says. “You have children in India and Ireland and Israel, in England and in Spain and Scotland and Iraq. All these countries have children with autism and it’s the same — in the past eight years the numbers have started to grow and grow and grow. This is not a phenomenon that is happening only here.”
One of the things that makes telling the story of autism difficult is that it is not just one thing — the term autism can cover a range of disorders with a range of behavioral symptoms and a variety of names attached to them. Complicating the situation further is that most people’s images of autistic individuals are shaped by media representations. Many people have become familiar with autism through films like “Rain Man,” in which Dustin Hoffman played a moderately high-performing autistic man with a gift for seeing large numbers of things, or TV dramas where autistic children wear football helmets and bang their heads incessantly against a wall. While neither of those versions is entirely untrue, they are not typical, either.
In reality, autism can run the gamut from highly verbal and intelligent kids with Asperger’s syndrome — an inability to understand emotional responses the way others do — to Rett disorder, a condition affecting mostly girls, where normal development stops and goes into reverse somewhere between 6 and 18 months of age. Some autistic children are developmentally disabled and others are of normal or even above-average intelligence. And their ability to connect to others also varies from nearly normal to barely aware of the outside world.
This is how Barri Rind recently described Eitan’s world: “Our son Eitan will have his 9th birthday soon, but he doesn’t know it. We will sing ‘Happy Birthday’ and he may smile, thinking it is just another song. His brother and sister will open the gifts for him, but he won’t look at them because he is more interested in crumpling up the wrapping paper into a ball while rocking and moaning. The rocking comforts him.”
As far back as 1943, Dr. Leo Kanner first identified autism as a distinct medical condition, yet it took more than half a century for real progress to be made in understanding what is happening or to begin to find ways of helping autistic children to break out of their neurologically imposed isolation.
Part of the answer lies in genetics. In the past few years, tremendous progress has been made on that front. Beginning in 1988 the evidence began to indicate that there was a genetic element in autism, and in 1997 first of six genetic links to the disease was confirmed. Since the mapping of the human genome was largely completed last year, the discoveries have been coming at an increasing rate. But that, says Rind, solves only one part of the mystery.
“There may be something in the environment that triggers it,” she says, “and nobody knows what it is — it could be a virus, it could be a toxin, it could be all kinds of things. I got involved with it because I think it’s crucial to do biomedical research and it’s urgently needed because if the numbers are rising every day, that means that the next generation is at risk.”
After her daughter requested that people donate to NAAR instead of giving her gifts for her Bat Mitzvah, Rind says, she was contacted by the group’s director, who recruited her to organize a walk-a-thon in this area to support the research programs. While she has been involved in Jewish community affairs here for more than 20 years, including helping fund the creation of the Jewish Day School and chairing Jewish Federation events, Rind says she did not know anything about putting together a Walk-a-thon.
“Cynthia Stroum was at my home at an event where I first talked about this, and the next day she called me and said, ‘I’m going to sponsor you.’ She was my first sponsor,” Rind says. “I want to thank all my friends and everybody in the community — the Benaroyas and Martin Selig — everyone who came forward without pressure, without hesitation, just helped.” With the help of NAAR’s advisors and her co-chairs, Linda Bressler and Linda Suzman, and a wealth of other committee members and friends, the walk-a-thon is happening on Sunday, June 9, at Marymoor Park in Redmond. The 3-1/2 mile walk will start at 10 a.m., rain or shine, with check-ins an hour beforehand. Parking at the county park is free and refreshments will be available.
Other friends and committee members Rind mentioned with gratitude included Sherry Benaroya, Deborah Rosen, Dianne Loeb, Karen Brechner, Jacquie Bayley and Brenne Schario.
“I feel really lucky that I have such wonderful friends. I feel really lucky that I am part of the Jewish community,” says Rind. “The Jewish community understands what giving is and that it’s important.”
For information about the Family and Friends for Autism Research’s “Walk FAR for NAAR,” call 206-275-4490, e-mail [email protected], or log onto their Web site: www.autismwalk.org/seattle.