HOWARD LIPIN / Union-Tribune
Unlike some autistic children, Stephen Adams enjoys toys, which provides his parents and teachers with another means of connecting with him.
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Part One: Mental Blocked
As rates of autism rise, research has determined that autistic brains develop differently from normal brains, but understanding about cause and treatment remains elusive. Skepticism and even downright hostility cloud the relationship between scientists and families with autistic children.
Part Two: Facing Autism
First, the hard part is hearing that your child is autistic, say parents. The second struggle -- an ongoing one -- is getting the help the child needs. Families talk about the ramifications of the disease of "lost children."
Books on autism and related diseases
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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.
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Red flags
Warning signs of autism: A definitive diagnosis of autism requires a thorough medical and psychological evaluation by specialists. However, certain persistent behaviors may be red flags for autism in a young child.
Does not respond to his or her name.
Cannot explain what he or she wants.
Language skills or speech are delayed.
Used to say a few words or babble, but now doesn' t.
Appears, at times, to be deaf.
Does not follow directions.
Does not wave or point bye-bye.
Throws intense or violent tantrums.
Displays odd movement patterns.
Is hyperactive, uncooperative or oppositional.
Doesn' t know how to play with toys.
Doesn' t smile when smiled at.
Has poor eye contact.
Seems to prefer to play alone.
Is very independent for his or her age.
Seems to tune people out.
Is not interested in other children.
Walks on his or her toes.
Shows unusual attachment to toys, objects or schedules.
Spends a lot of time lining things up or putting things in a certain order.
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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."
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Autism support and assistance groups
Autism Society of America/San Diego County chapter
(619) 595-3691
www.sandiegoautismsociety.org
North County chapter: (760) 479-1420
Provides information on autism and various approaches, treatment methods.
Children' s Hospital Developmental Evaluation Clinic
(858) 966-5817
Provides developmental or psychological assessments and recommendations.
Children' s Toddler School
Children' s Hospital
(858) 966-7707
Provides integrated toddler program for children with and without Autism Spectrum Disorder.
Families for Autism Intervention and Resources
(619) 461-2283
HOPE Infant Family Support Program
(760) 736-6344; (858) 292-3700
Provides early intervention for children to 3 years old in San Diego County.
San Diego Regional Service Center
(858) 576-2996
State-funded agency provides referral, evaluation, behavioral consultation and advocacy services.
Exceptional Family Member Program
(619) 532-7291
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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."
