‘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