Irvine Couple, Their Family Racked by the Effects of Autism, Work to Help Others Cope With the Disorder

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 of--against all mathematical odds--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 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.

Until children begin showing autistic traits, many begin developing normally and acquire age-appropriate language. Then suddenly, verbal skills taper off--usually around 20 months--and the autistic symptoms of withdrawal begin to 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.

Obtaining a diagnosis took several months and an assortment of specialists. 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 autistic behaviors.

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

“The last fall of his life he had been doing really well,” says his mother. “He was showing an interest in other children for the first time. During the last days before he died, he was pointing to letters and telling us what they were.”

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 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, story swapping in therapy sessions and a common thread of despair during parent 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 all felt so badly for this family who lost their son. We decided the group should be dedicated to providing help, in Benjy’s memory.”

That was a year ago. Since then, ACCESS has attracted some 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. Beyond that, not much is known about the causes of autism.

“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.”

Rimland believes that cases of autism are growing. In an article titled “Is There an Autism Epidemic?” he writes that “the number of young children who are being considered possibly autistic has increased markedly.”

According to the Autism Research 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.

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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, whose 4-year-old son Dylan was diagnosed with autism 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.”

Cortes says she suspected that something was wrong with Dylan for some time before the diagnosis. “When you called his name, he wouldn’t react,” says the Garden Grove resident. “He never looked you in the eye; he’d ignore family and friends. He was a loner.”

Klumb says her son Matthew’s diagnosis 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.

Parents often need lots of help for their autistic children for a variety of reasons. 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,” according to Doreen Granpeesheh, director of the Center for Autism and Related Disorders in Encino and a professional advisor to ACCESS. “The emotional difficulties are a result of not knowing the cause or inherent effect of this extremely disturbing disorder. The scientific field has been baffled for decades.”

“If you’re aware of the symptoms, it’s not that hard to pinpoint, but it’s a behavioral diagnosis; there is no blood test or X-rays involved,” says Pauline Filipek, a UCI child neurologist who works with autistic children.

“There is a whole constellation of autistic behavioral characteristics. You’re also talking about an IQ range of 20 to 180.”

Among the symptoms: little or no language, little playing with toys or peers, few social and self-help skills and abnormal responses to sensations--such as deficient startle and pain response, little or no eye-to-face contact.

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,” says Cortes. “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 them paid by either 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, so that’s what parents ask for. In most cases, it’s not enough.”

Most experts agree that intensive intervention is the best treatment available to help autistic children. 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, autistic 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 other experts in autism.

Many of these programs call for 40 hours a week of intensive therapeutic intervention, including verbal drills, speech therapy and fine motor exercises. All of these efforts also get a boost by listing families needing help and available therapists in the ACCESS quarterly newsletter.

Graves says the group continues to negotiate with school administrators and the Regional Center of Orange County for improved services.

Last June, three south Orange County school districts and the Orange County Department of Education created a pilot preschool program using intensive, one-on-one behavior modification teaching methods.

Cortes wants other parents of autistic children to know about ACCESS, that there is a place where they can get help.

“ACCESS has been a blessing,” she says. “I thank God it’s here. It has made it possible for a regular Joe like me to afford to give my son one-on-one therapy in my home.”

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Among the autistic children who will benefit from the gains his parents made 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.

The sibling recurrence rate of autism is about 2%.

“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 said.

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

“As certain developmental things didn’t happen, we started to worry,” Pomeranz says. “By about 18 months, we were pretty sure there was a problem with Jesse and continued to hope there wasn’t a problem with David. We kept hoping it was just a language delay. By the time they were 2, there was no doubt left.”

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

“Dylan said ‘Mommy’ three times to me,” says Cortes. “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 of a person, but he’s helped me become strong. And I thank him for that.”

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About Autism

Autism is a lifelong developmental disability 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.

The Autism Society of America estimates that 400,000 people in the United States today have some form of autism.

Symptoms, which can be mild or severe, include disturbances in physical, social and language skills; abnormal responses to sensations; and an inability to relate appropriately to people, objects and events.

The cause of autism is not known, although it is believed to be a biological disorder affecting certain areas of the brain. It is not believed to be caused by emotional factors.

Early diagnosis and intervention are vital to the future development of the autistic child.

For information on local support groups and autism resources, call the Orange County Chapter of the Autism Society of America, (714) 573-4093.

To contact ACCESS, call (714) 841-5796 or write 92 Corporate Park, Suite C 500, Irvine CA 92714.