New memoir tells of mother's journey with son who has autism

From the Contra Costa Times in California:

It was Matthew Shumaker's strange obsession with wheels and drains that spurred the first nagging doubts. While other toddlers tumbled down the padded ramps at Gymboree, or giggled under a billowing parachute during the baby games, Matthew toddled away to examine the wheels on a small rolling cart.

Other children conversed. Matthew echoed what other people said. He didn't make eye contact. And his attention could be completely derailed by the sight of water swirling down the sink. And when a mall Santa asked what he wanted for Christmas, Matthew said, "A drain." Santa beamed, thinking the toddler had asked for a train.

"In our hearts," says Lafayette author Laura Shumaker, "we knew it was autism."

Autism has been splashed across headlines lately. If it's not Jenny McCarthy on the cover of People magazine, talking about how she cured her son of a disorder that affects more than a half-million American children, it's TV plots, or Michael Savage and Denis Leary mouthing off.

But Shumaker's much-praised new memoir, "A Regular Guy: Growing Up With Autism — A Family's Story of Love and Acceptance," dials down the rhetoric to reveal the realities of life with an autistic child, from Matthew's toddler days to manhood.

Don't expect lessons on how to cure the disorder. That's the story her first publisher wanted. Instead, Shumaker opted for a self-published book, a compelling and loving look at her family's struggles to help Matthew, now 22, lead the life he yearns for as "a regular guy."

The book's lyrical writing and emphasis on love, support and resilience have earned praise from doctors, including John Swartzberg of UC San Francisco; and Ricki Robinson, of the University of Southern California School of Medicine. Meanwhile, local bookstores have been snapping up the self-published book, and several major publishing houses are interested.

Shumaker says she simply hoped sharing her story would help parents, teachers and friends grappling with what can be devastating news.

"When you're young, you think you can fix them," says Shumaker. "If I knew then what I know now, I don't think I could have done it."

Things are different now, Shumaker adds. There are early intervention programs; and new therapies involving hyperbaric oxygen chambers, chelation, auditory integration and diet offer hope to many families. Some of the biggest centers of autism research are right here at UC San Francisco, Children's Hospital and UC Davis' M.I.N.D. Institute.

But back in the late '80s, Matthew's small army of doctors and therapists hadn't seen many cases, and the youngster was finally diagnosed at age 6. Family friends only knew of the disorder because they'd seen something on, say, "Oprah," but no one really knew what it was or how to react.

The book spans the years from those first haunting fears to the heart-wrenching decision to send Matthew, then 15, to school at Camphill, a community for special education students in the rolling hills of Pennsylvania.

"I was really heartbroken," Shumaker says. "And a friend said, 'Matthew's gone — thank God!' I thought, maybe I've protected my friends from the truth."

The truth is that even when things are bad, when the police come to call on a daily basis and family members are stretched to their breaking point, Matthew is still his family's beloved child. And even though Camphill was wonderful — it "helped him learn he was of value," says Shumaker "he had a job and great friends" — it was on the other side of the country.

What people don't talk about, she says, is that whatever solutions a family may have found to help special needs children, autism and adolescence are a volatile combination. Children with autism have no social filters, no sense of what's acceptable in social interaction.

"It's like a truth serum," says Shumaker. "There are no filters."

But they yearn for the same companionship and love that anyone does. They just have no idea how to get it.

The result is a sense of deep isolation and desperate loneliness. A heavy burden is placed on younger siblings, who end up taking on the role of "big brother" and protector — and sometimes, despised rival. Matthew's jealousy of his younger brother's life — which includes a driver's license and a girlfriend — has been hard on them both.

"As a family, we've been through a lot of these stages," Shumaker. "We have to have a good sense of humor."

Matthew, now 22, is back home for the moment, sleeping in his childhood room with its soothing pale aqua walls and prized encyclopedia collection. He'll be moving to his own apartment near a Camphill community for adults in Santa Cruz.

Meanwhile, he's bemused by all the attention. When asked to sign a book, he says, simply, "She loved me enough to write a book about me."