April 3, 2003
‘Finding’ Asperger’s Changed His Life
In "Finding Ben: A Mother's Journey Through the Maze of Asperger's," (McGraw-Hill/Contemporary Books, 2003) author Barbara LaSalle writes about her family's struggle to help her young son overcome a baffling neurological disorder and have a "regular" existence. Misdiagnosed and maladjusted, Ben Levinson was labeled as everything from learning disabled to emotionally disturbed and was even committed to a psychiatric ward before LaSalle, a marriage and family counselor, was able to correctly diagnose him with Asperger's Syndrome (AS).
While AS and autism diagnoses are increasing at alarming rates, "Finding Ben" presents a frightening portrait of one family in the days before treatment was widely available.
The book begins with Levinson's birth in 1969 and goes through the many torturous incidents that marked his differences throughout his childhood and adolescence. It culminates in his arrest for threatening a residential caretaker in a halfway house where he had been placed, and his long road back to a normal life. It is disturbing to read, but compelling -- the book is as much about a family dealing with the guilt, anger and denial surrounding caring for a disabled child as it is about Levinson's unusual life.Â
One bright spot in the family's struggle was their involvement with Temple Beth Hillel in Valley Village. Ben attended preschool and had his bar mitzvah there, and LaSalle says the havurah in which they participated was especially supportive. Despite his challenges, Levinson was able to finish Hebrew school and LaSalle said the family still relies on Levinson at Passover to read the Hebrew portions of the haggadah.
But, for the most part, life with Ben was a constant challenge. As he grew, his problems increased to include asthma and Crohn's Disease, leading to medication which in turn led him to become morbidly obese. The family tried motor therapy (an early form of occupational therapy), speech therapy, even a private school where the teachers followed their students through each grade level, in the hope that Ben might feel comfortable enough to make friends. He never did.
All the while, LaSalle never stopped searching for answers. Finally, when Levinson was 23, Dr. Mark Deantonio of UCLA's Neuropsychiatric Institute told her the truth: Ben was autistic. Not autistic in the classic sense, but his problems put him on the autism spectrum.
Two years later, in 1994, the criteria was established in the medical community for an even more specific diagnosis, that of AS, a higher-functioning form of autism in which children have normal or even superior verbal skills and intelligence.
"Finding Ben" is a modern tragedy -- not in an exaggerated, fictional sense, but a true tragedy in that the people involved are simply living in the wrong time in history. Even Levinson himself, now 34 and co-author of the book, acknowledges that, had the diagnosis of AS been available when he was a child, his life would have been infinitely easier.
LaSalle said she started out writing the book as a way of making sense of everything that had happened to her, to Levinson's father (an attorney, referred to as "Steven" in the book), his stepfather, John LaSalle, and his brother, David. It is clear from talking to LaSalle and from her writing that she still carries a great deal of guilt. Her honesty about her feelings for and against her son are shocking: She opens the book with a description of Levinson that would seem cruel coming from anyone, especially from a mother. But LaSalle hopes her honesty will open the doors for readers to come clean with their families and deal with their feelings, even the ugly ones.
"The most important thing is acceptance -- that what is, is," she said. "We are required to accept and love our children no matter what. That is the gift we give our kids."
It is a lesson she almost learned too late. Only by letting go of Ben as her "project," and through volunteer work where she met a stroke victim with even more profound problems than her son's, was she able to change her approach from that of "badgering mother" to one of support and acceptance.
"I saw my son as a job," she said. "He wasn't someone to enjoy. I think we all have that [attitude] at times, when we have children with special needs. But in treating it like it is a job, we miss out on what's right in front of us and our children miss out, as well."
Levinson and his family seem to have made peace with his diagnosis. He is currently in a 12-step program for people with weight problems, which he credits with giving him the structure and social network to finally not only make friends but learn to be a friend as well. An Orthodox rabbi and his wife who participate in the program have helped him reconnect with "the spiritual side of Judaism." Levinson attends Loyola Marymount University where he is studying American history with plans to graduate next year, possibly to become a teacher.
Levinson also runs a Web site (www.aspergerjourney.com) where he shares his insights on his disability and communicates with others affected by AS. He feels his experience with AS, while difficult, has given him a valuable perspective.
"One time I was complaining to my sponsor: Why did God put this burden on me? And my sponsor said, 'The reason you have had to go through this is that one day you are going to meet someone who will require your personal experience. You will be in a unique position to help another human being,'" Levinson said. "There are a lot of us out there [affected by AS]. I tell them, don't be ashamed of who you are, be proud. Start to talk about it as much as you can. Find people who understand and talk about it with them. Asperger's is a daily struggle, but it's easier now because I'm not in denial."
Both LaSalle and Levinson will discuss "Finding Ben" on Friday, April 18, 7 p.m. at Dutton's Brentwood Books, 11975 San Vicente Blvd., Los Angeles. (310) 476-6263. Â