Easing the Grip of a Silent World : Out of One Couple’s Push to Reach Their Autistic Sons Has Come a Group That’s Now an Important Source of Help and Hope for Families

Sometimes the twins still talk about their older brother. “Where’s Benjy?” they ask.

His artwork still hangs on the wall of his bedroom, his books line the bookshelves. When their parents cry, the twins know it’s about Benjy.

As the 3-year-olds bounce on a trampoline in their Irvine living room, Maureen Graves flips through a photo album of Benjamin, the oldest of her three young sons.

Benjamin, who died 15 months ago, was autistic. So are his two brothers.

As the photos of Benjy in swim trunks give way to Benjy as Batman at Halloween, Graves shares the story that has enveloped her family for the last five years. The heartbreak--against all mathematical odds--of having three children become autistic. The grief of losing 5-year-old Benjy to causes unrelated to his autism just as he seemed to be breaking through his wall of isolation. The struggle to hang on to hope.

Today, an organization that Graves and her husband, Ken Pomeranz, founded after Benjy’s death has become an important source of information and services for families with autistic children in Southern California.

Autism is a little understood--and apparently growing--disorder that typically appears during the first three years of life. It occurs in about 15 out of every 10,000 births and is four times more common in boys than girls, according to the Autism Society of America.

Many autistic children begin developing normally and acquire age-appropriate language. Then, suddenly, verbal skills taper off--usually about 20 months--and the autistic symptoms of withdrawal emerge.

As a toddler, Benjy went from having seemingly precocious early language skills to repeating strange phrases out of context. Eventually he stopped learning new words and talked very little. Although he was cuddly and affectionate, he began to withdraw more and more.

By the time Graves, a lawyer who specializes in special-needs cases, and Pomeranz, a UCI professor of history, began to get a grip on Benjy’s condition and prognosis, they had twin toddlers starting to show some of the same behaviors.

Graves describes the progress Benjy had begun to make in the middle of his fifth year, just before his death (caused by an allergic reaction to an asthma medication).

“The last fall of his life he had been doing really well,” his mother says. “He was showing an interest in other children for the first time.”

Although Graves and Pomeranz had talked before Benjy’s death of forming a group to help parents like themselves obtain information on autism, they didn’t see how they could do it in addition to their other responsibilities. After Benjy died, it seemed imperative.

ACCESS, an acronym for Autism Coalition for Creative Educational and Social Services, began with a group of parents sitting around a kitchen table, the result of hurried introductions in waiting rooms and a common thread of despair during support group meetings.

“I decided to get involved because my autistic son and Benjy were in the same class,” says Francoise Klumb of Corona del Mar, whose son, Matthew, is 4. “We decided the group should be dedicated to providing help, in Benjy’s memory.”

That was a year ago. Since then, ACCESS has attracted about 200 members, including a 23-member board of professional advisors. Graves, who is president, says the group’s primary thrust is to organize families, professionals, students and friends to develop and deliver intensive educational and social services to autistic children.

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When psychologists first observed the disorder in children during the 1930s, they thought it resulted from aloof parenting and insufficient bonding. In terms of research, that was the Dark Ages.

Experts today believe the cause of the disorder--characterized primarily by language delays, abnormal responses to sensations and odd methods of relating to people--is biological rather than psychological.

“The leading theories are that individuals have a genetic predisposition, an impaired immune system, food or chemical intolerance, or brain impairment from viruses or other causes,” says Bernard Rimland, director of the Autism Research Institute in San Diego and author of “Infantile Autism” (Appleton-Century-Crofts, 1964).

Rimland believes that cases of autism are growing. In a recent article, he wrote, “The number of young children who are being considered possibly autistic has increased markedly.”

According to the institute’s database, during the years 1965-’69, 1% of the 919 cases reported involved children younger than 3; in the years 1994-’95, 17% of the 3,916 cases reported involved children younger than 3. Rimland suspects increased use of antibiotics, vaccinations and growing pollution for the increase, and research is now focusing on these possible culprits.

For parents who thought their toddler was developing just fine, a diagnosis of autism is a shocking blow.

“It was the hardest thing I’ve ever gone through,” says Evelyn Cortes of Garden Grove, whose 4-year-old son Dylan’s condition was diagnosed a year ago. “It felt like my perfect child was taken away from me. It was as close to a death as I’ve ever gone through.”

Klumb says the diagnosis of son Matthew’s condition in June 1994 was devastating. “There was no place to turn. It kind of tore the family apart. It caused a lot of heartache and pain and confusion.

“I had no inkling,” she says. “I just thought my son was a late bloomer. He was fine until he was about 18 months. Then a neighbor remarked that he may have a little autistic behavior.”

Among the signs: getting “lost” in activities such as lining up toys and sifting sand through his fingers; withdrawing in terms of social interaction, loss of eye contact.

For parents, helping their developing child become verbal and engaged in family, friends and activities takes a huge and constant effort. Because of sensory handicaps, the children face countless dangers.

“Families of autistic individuals endure tremendous emotional hardships,” says Doreen Granpeesheh, director of the Center for Autism and Related Disorders in Encino and an advisor to ACCESS. “The emotional difficulties are a result of not knowing the cause or inherent effect of this extremely disturbing disorder.”

Autistic children often show aggression and throw tantrums, and most indulge in self-stimulating behavior such as rocking, spinning, gazing or flapping their arms.

“It’s very difficult being the mother of an autistic child,” Cortes says. “He can’t tell you about his day. It’s hard to take him out in public because he has tantrums. You feel like other parents are always judging you, like it’s bad parenting. You feel bad when people stare and you feel like explaining, ‘It’s a neurological problem!’ ”

After the diagnosis, the next struggle is locating appropriate services and getting support either from insurance or a public agency charged with assisting special-needs children.

Graves says she and her husband waged a tough fight for services on Benjy’s behalf. “I was starting to feel fortunate that we had me as a special-needs lawyer and Ken on the faculty of UCI, but even for us it was incredibly hard to put together a treatment approach. A lot of parents are deferential to professionals and professionals tend to propose minimal service levels.”

Most experts agree that intensive intervention is the best treatment available. The challenge facing parents is finding enough volunteer or professional help to engage the kids most of their waking hours to prevent them from retreating into their private world. To this end, Graves’ group has organized a UCI field study for students to earn credit for teaching autistic children.

The group is also coordinating with the county Department of Education to train therapists and family members in intensive behavior modification methods, called discrete trials, pioneered by Ivar Lovaas of UCLA and others. Many of these programs call for 40 hours a week of intensive therapeutic intervention, including verbal drills, speech therapy and fine motor exercises.

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Among the autistic children who will benefit from the gains his parents are making on behalf of Benjy will his two younger brothers.

As Graves and Pomeranz watched Benjy begin to grow and become more involved in his therapy, they started worrying about his baby brothers, Jesse and David.

“With Jesse there was a lot of concern early on. He didn’t make much eye contact and had more classically autistic behaviors than Benjy did,” Graves says. The sibling recurrence rate of autism is about 2%.

Before the twins were 2, she and her husband suspected the worst.

Although few recover completely from autism, ACCESS members believe they can make better lives for their kids.

“Dylan said ‘Mommy’ three times to me,” Cortes says. “My goal is to have him mainstreamed by first or second grade. ACCESS has made this possible. So, hopefully, when my husband and I pass on, he won’t be institutionalized.”

And Dylan, like Benjy before him, has brought something else to his family: Courage.

“Dylan has made me stronger,” she says. “I’m not really that strong a person, but he’s helped me become strong. And I thank him for that.”

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Where to Find Support

Autism is a lifelong developmental disability that typically appears during the first three years of life. The Autism Society of America estimates that 400,000 people in the United States today have some form of autism.

For information on support groups and autism resources, call the Autism Society of Los Angeles, (310) 559-5664. To contact ACCESS, call (714) 841-5796 or write to 92 Corporate Park, Suite C 500, Irvine CA 92714.