While science seeks the hows and whys, families search for new ways to
connect, care and cope
By Scott LaFee, San Diego Union-Tribune
It was part of the routine most mornings: Stephen Adams would wake
up hungry, eager for breakfast. His mother, Emma, would prepare it, then ask
Stephen: “What do you say?”
“Peas,” Stephen, then 16 months old, would cheerfully reply.
One morning Stephen’ s mother asked and he didn’ t answer. “He
looked dumbfounded, like he didn’ t know what I was talking about,” Adams
recalled.
“He didn’ t say peas — please — again until he was 4.”
Within months of no longer saying please, Stephen didn’ t say
anything at all. His language skills, which had been typical for a toddler his age,
vanished. Then Stephen did, too.
“He stopped smiling and laughing,” said Adams. “He just sat there.
He wasn’ t the boy I knew. I didn’ t know what was happening. I thought he
might be acting out because he missed his father, who’ s in the Navy and
sometimes has to go to sea for months at a time.”
But that wasn’ t the problem. Stephen, it would turn out, is
autistic.
In many ways, autism is about lost children. It is a disease — a
spectrum of neurological disorders, really — that are typically diagnosed
around the age of 2. In cases such as Stephen’ s, apparently normal
children suddenly are not. Early language and social skills fade, then disappear.
Inexplicable, sometimes dangerous, behaviors emerge. Parents watch
helplessly as their child transforms into somebody they do not
recognize — and who often does not recognize them.
Victoria Ikerd remembers when her son, Jacob Cogar, changed. At the
time, Ikerd already was caring for a 3-year-old autistic daughter, Savine.
Like Stephen, Savine Cogar had seemed a typical child until she was 1-1/2
years old. That’ s when she stopped saying words such as “hi” and “bye”
and “mama.”
“I don’ t think I realized it immediately,” said Ikerd. “It’ s not
like you expect your child to just not talk one day.”
Savine began acting odd. She giggled for no reason. She avoided eye
contact. She couldn’ t tolerate people singing.
Ikerd feared Jacob was similarly fated. At 10 months, she had him
assessed by doctors. He checked out fine. At 15 months, he still seemed
OK.
Jacob wasn’ t walking yet, but Ikerd was not overly concerned.
“But that’ s when he started falling away from me. He began pacing
and stomping in patterns, pressing buttons on and off. He wouldn’ t play with
toys. He wasn’ t a little boy who wanted to play with you. He was calm,
very easy to take care of, but he wasn’ t really interacting with us anymore.
We didn’ t seem to be there.”
Growing numbers
The cause or causes of autism are not known, but the disease appears
to be on the rise — everywhere. In California, there has been a 273 percent
jump in diagnosed cases between 1987 and 1998. Studies show similar or
greater increases in places such as Michigan, Florida, England and Japan.
Scientists once estimated autism struck one child in 10,000; now the ratio
is up to one in 500, perhaps higher. No one knows why.
Medical science has more questions than answers, but this much is
certain: When autism strikes a family, it changes more than the child. The
divorce rate in families with autistic children hovers at 75 percent.
Parents can be wracked by guilt, frustration, anger, denial and, always,
questions about the future. They wonder: What sort of life will my child
have? What will he do when we are gone?
A generation ago, the answer was often bleak and depressing. Autism
was scarcely recognized as a disease then, and even more poorly
understood.
There were no effective treatments. Parents were often unable to meet
their child’ s needs. The fate of many autistic children was life in a
psychiatric institutions. It’ s easier now. In the past decade, numerous autism
organizations and support groups have come into existence, among them the
Doug Flutie Jr. Foundation for Autism, created by San Diego Chargers
quarterback Doug Flutie after his son, now 11, was born with the disease.
Public schools have responded — in varying degrees — to the rise
in autistic students as well. San Diego city schools, for example, runs a
well-regarded, if somewhat overtaxed, program of special classes and
services.
“In the early 1990s, we had maybe 30 students in the district
identified as autistic,” said Bobbi Kohrt, an autism specialist. “Now
there are maybe 500, 600.”
Such programs help, though parents complain that they must sometimes
fight for services. “The hardest part of having an autistic child is first
hearing that you do and not knowing what it means,” said Shirley Fett,
mother of two autistic boys. “But once you get over that initial shock and
grieving, the hardest thing becomes getting what you think your kids need.
It’ s a constant effort.”
The effort is usually worth it. There is no cure for autism, but
some treatments are proving effective, particularly if started as early as
possible and based on behavior modification. These programs usually focus
on teaching behaviors through activities involving play-acting, mimicry and
visual aids. There is an emphasis on developing or reviving communication
skills. Stephen Adams, now 9 years old, has regained much of his language
ability, thanks in part to intense speech therapy sessions at UCSD and
special education programs in San Diego and elsewhere.
“We knew Stephen could talk, but he had lost his voice,” said his
mother. “Now it’ s back and getting stronger. He has a personality. He
will look you in the eye again. He’ ll shake your hand.”
Savine and Jacob also have improved with behavior intervention.
Savine chats gaily with a visitor to her house about the Barbie she received at
Christmas; Jacob spots a camera and grins.
Help wanted
If frustration exists in every autistic family so, too, does hope,
albeit tinged by desperation. Most autistic parents say they will try any
purported treatment and remedy, from dietary changes to cleansing the body of certain toxins.
“You can get frantic at times,” said Fett. “What do I do? How much
can I do? Having a child with autism is very labor-intensive, time-consuming
and expensive. I think we’ ve tried everything, a lot of it without effect.
Some parents get burned out but, for most of us, it just becomes a way of life.
I make phone calls every day about my boys, setting up appointments, dealing
with issues. We all reach a level we can handle.”
No parent knows how much he or she can handle until reality strikes.
It first struck Donna Rasmussen when she noticed her son, Jake, at 9
months old, was not like his 2-year-old sister.
“He would watch the Disney movie ‘ Pinocchio’ over and over,
laughing and giggling and flapping his arms,” Rasmussen said. “He loved to watch
the credits, and when they were over, he would scream until you started the
movie again.”
At a year, Jake said “mama” twice, “tasty” once, and then stopped
speaking. Jake didn’ t play with toys, but he was mesmerized by chalk,
which he carried everywhere, including into bed and the bathtub. Everything
seemed an ordeal and complication. Jake would eat crunchy apples, but not Jell-O
or ice cream. He hated shopping trips to Ralphs, but tolerated Vons.
Returning home by car required following a particular route. Jake threw “about 70
tantrums a day,” his mother sighed.
Rasmussen struggled to get Jake diagnosed. “Nobody wanted to talk
about autism,” she said. It was just as bad with family and friends. Some
became uncomfortable around Jake; some distanced themselves. Jake’ s
grandparents dismissed his behavior as merely strange. “They’ re still in
denial,” said Rasmussen. “They won’ t talk about the disease. It’ s like
they’ re afraid they’ ll offend somebody.”
At 2-1/2 years old, Jake was diagnosed with autism and behavioral
treatments begun. Rasmussen does much of it herself, teaching Jake, now 6,
with pictures and much repetition.
Life is better — for everyone.
“Jake’ s much improved,” Rasmussen said. He’ s in first grade. He’ s
talking again. He reads and loves computer games. “Autistic kids aren’ t
stupid. Many have normal intelligence. They just don’ t have a way to
express themselves, to let go of their thoughts and feelings.”
Donna Rasmussen dreams the dreams of mothers and fathers everywhere,
that her children will have long, happy and productive lives. At one time,
she feared Jake would never learn to even eat with a fork, but now
Rasmussen thinks he might attend college some day, find a job, create an independent life of his own.
But there is doubt, too. For most autistic families, uncertainty is
a permanent shackle. Asked when she knew things with Jake were going to be
OK,Rasmussen paused, then said: “Maybe the day after tomorrow.”