Advertisement
YOU ARE HERE: LAT HomeCollections

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

February 08, 1996|KAREN NEWELL YOUNG | SPECIAL TO THE TIMES

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.

*

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.

Advertisement
Los Angeles Times Articles
|
|
|