Getting the diagnosis of autism for a child is just one step down a long, rough road -- a step that too often comes late.
It takes time for parents to realize something's wrong with their child. It takes more time still for professionals to agree there's a problem and figure out what it is.
A pediatrician might suspect a hearing disorder: You can clang two pots and Johnny won't even turn his head. A speech therapist might think it's a language problem: Jenny isn't talking at age 3 except to echo the words of other people. A psychiatrist might decide Jimmy is emotionally disturbed: He has screaming fits and won't do what he's told.
Next comes perhaps the hardest struggle of all -- figuring out the best way to help your child.
There is no known cure for autism, a devastating brain disorder in which children are mysteriously cut off from interacting with others around them. But the best prognosis for an autistic child is when intensive interventions start as early in life as possible.
Delays, though agonizing, aren't surprising. Doctors haven't traditionally had their antennae tuned to autism. There's no blood test to render a simple "yes" or "no" diagnosis: Authorities must rely on involved assessments that probe an array of behavioral traits.
And knowledge about autism is primitive, compared with knowledge about diabetes or heart disease.
"It's like where they must have been at the turn of the [last] century with diabetes, when they knew that the urine was sweet," says Dr. Ricki Robinson, a pediatrician and a clinical professor of pediatrics at the University of Southern California School of Medicine.
But change is coming. The sharp increase in children diagnosed with autism means that the disorder is on doctors' minds like never before -- so autistic children are less likely to be overlooked or misdiagnosed.
And that means that the fate of many autistic children (it is believed there are 500,000 individuals with the disorder in the United States) is less likely to be an institution, group home or lifelong dependence on parents.
Even so, desperation has created a climate in which shaky reports of miracle cures are easier to find than solid scientific studies.
"Every year it's something different," says Ami Klin, a psychologist with the Yale Child Study Center in New Haven, Conn. "Parents need to be tremendously skeptical."
And diagnoses often come with scant direction, so parents can spend months or years researching how to find help themselves.
"You're told: 'Your child has a severe disability, there's no cure, about no research going on, we don't know how to treat him -- goodbye!' It's incredible in this day and age," says Los Angeles resident Portia Iversen, mother of 8-year-old Dov Shestack, who has autism.
Frustration led Iversen and her husband, Jon Shestack, to start Cure Autism Now, a nonprofit group that funds autism research and has campaigned for government funding.
While many autism groups focus on obtaining services for autistic kids, Cure Autism Now's focus is on improving the science. Early on, the group commissioned a study that assessed the cost of autism as $13 billion annually in services and lost wages.
The group also spearheaded the effort for legislation for increased federal autism funding. In October, President Clinton signed into law a bill that will provide $40 million a year for five years for autism research.
Focusing on the self
Autism was first described by psychiatrist Leo Kanner in the 1940s. Its cause or causes are still unknown, although both genes and environmental factors appear to be involved. Its symptoms and severity vary tremendously from child to child: These days, in fact, it's described as a "spectrum" of disorders.
Autistic children may have mental retardation or be uncannily brilliant. But what they have in common are brains that don't seem to be wired to pay attention to signals even babies react to instinctively: A human face. A mother's voice. Children playing.
Thus it's no wonder that an autistic child tends not to meet a person's gaze or want to play, learn to speak or want to communicate, pay any more mind to a mother cooing over a crib than a leaf twirling in the wind.
Fisk Bothwell, who lives in Long Beach, Calif., was diagnosed with autism just before his third birthday. As is typical for a child with so-called high-functioning autism, he taught himself to read at a precociously young age but was indifferent to other people and soon stopped talking and making eye contact.
And like many children with autism, Fisk developed obsessions -- lining up magnetic letters all day and carrying them to different parts of the room in elaborate rituals that couldn't be interrupted. Soon, he couldn't go out in public because he would scream inconsolably when his parents couldn't give him letters that he saw on signs.