Autism groups focus on needs of grandparents

When Louise Beckman mentioned Chanukah to her toddler granddaughter two years ago, the child’s repeated response was: “No presents.”

Beckman felt rejected.

Her granddaughter, who was diagnosed with autism, has improved her ability to communicate with others due to early intervention from professionals and her loving parents. But Beckman, 63, is still grappling with what it means to have a grandchild with autism.

A member of the Tustin-based Grandparent Autism Network (GAN), Beckman turned to the group for advice.

“I was told that she probably was bothered by the noise of opening gift wrapping, which is magnified by the acute hearing experienced by many on the autism spectrum,” she said. “My gifts were presented unwrapped and were received without a stressful reaction.”

Children diagnosed with an autism spectrum disorder typically exhibit difficulty with social interaction and communication. Many autistic children have repetitive interests and activities, attachment to objects and an aversion to changes in routines. The disorder is usually diagnosed between the ages of 2 and 3 and can range from mild or high-functioning to severe in degrees of affliction.

In the 1970s, the rate for autism was 1 in 10,000. Today, one child in 150 will be diagnosed with an autism spectrum disorder, according to federal studies.

Far more grandparents than ever before are trying to make sense of this disorder, and services for grandparents are only just starting to gain momentum. Groups like GAN in Tustin and HaMercaz in Los Angeles are providing support and education for grandparents worried about the lives of their children and grandchildren.

When Bonnie Gillman, 66, learned that her grandson was diagnosed with autism, she decided to do more than shed tears.

In April 2006, Gillman founded GAN to educate grandparents about autism resources, as well as the medical, educational, legal and social issues that impact their families.

“Grandparents have a different perspective: Our children are focused on the challenges of their child with autism, meeting the needs of their typical children and just getting through a day without total exhaustion,” she said. “Grandparents are concerned about their children, all of their grandchildren and every future generation that may be genetically predisposed to autism.”

Gillman’s faith helped guide and motivate her to forming GAN, which currently serves more than 600 members.

“It has been instilled in me by my Jewish great-grandparents, grandparents and parents to help people,” she said. “Helping to bring resources to people with unmet needs has always been my priority.

“When I felt devastated and helpless to understand my grandson’s condition, I knew I had to make things better for our family,” she continued. “When I couldn’t find any information for grandparents and I knew that my feelings were universal, I wanted to identify resources to share with other families, as well.”

Sally Weber, director of special-needs programs at Jewish Family Service of Los Angeles and co-founder of HaMercaz, is also helping grandparents learn more about children with special needs.

In September, the agency offered a workshop titled, “Grandparents of Grandchildren With Special Needs Have Special Needs, Too!” at The Jewish Federation Goldsmith Center. The workshop will be offered again in spring and fall 2009.

“As grandparents, we go through a range of feelings. Some of these are triggered by the child’s behavior and how the parents react to it. Grandparents are frightened and upset that their grandchild is experiencing these problems. They’re also upset that their children have to cope with these issues,” said Weber, who is a grandmother of three and a mother of a daughter with special needs.

Weber said there are a number of reasons why grandparents of special-needs children need support. In addition to providing an opportunity to normalize feelings and express hurt or angry feelings, she said it can be a safe place to use humor, a very healing emotion that in other social settings may seem less appropriate.

Weber added that some grandparents need support because they can find it difficult to talk to their friends about their grandchildren’s conditions.

“While their friends can be compassionate, they only listen so much. Eventually, their friends move on in the conversation, discussing their own grandchildren’s accomplishments. This creates a feeling of isolation for the grandparents. They find themselves in this unknown and unexpected place. They had expectations about their grandchildren and what their lives would be like. They also had expectations about how they were going to grandparent that have to be re-examined,” she said.