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.
And getting a diagnosis is only the beginning. Next comes perhaps the hardest struggle of all--figuring out the best way to help your child and battling to get services.
All the time the clock is ticking. All those minutes and months of childhood gone. There is no known cure for autism, 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, a devastating brain disorder in which children are mysteriously cut off from interacting with others around them. There's no blood test to render a simple "yes" or "no" diagnosis: Experts 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 La Canada-Flintridge pediatrician and a clinical professor of pediatrics at USC 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--contrasted with former years--that the fate of many autistic children is far less likely to be an institution, group home or lifelong dependence on parents.
Many children can be at least partially coaxed back out from their remote, inner worlds and learn to talk with others, go to regular schools, hold down jobs, have friends.
"For so long, people had a misunderstanding of what autism is--they thought that interventions were a waste of time," says Betty- Jo Freeman, professor of medical psychology at the UCLA School of Medicine. "It's not true at all. The natural course of autism, for children who get intervention, is one of improvement. Clearly, from a clinical point of view, we're seeing kids doing so much better it's unbelievable."
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 L.A. resident Portia Iversen, mother of an autistic child. Frustration led Iversen and her husband, Jon Shestack, to start Cure Autism Now, an L.A.-based nonprofit group that funds autism research and which has campaigned fiercely for ramped-up government funding.
And though federal law requires school districts to provide "free appropriate public education" for children with disabilities such as autism, there can be anything but agreement about just what "appropriate" means.
It is the perfect breeding ground for bitterness and conflict--for the evolution of a survival-of-the-fittest system where well-heeled and educated parents get better services for their kids because they can retain mediators, lawyers and independent experts and can better press their case in intimidating school district meetings.
Being scrappy makes a world's worth of difference too.
"The most successful parents are the ones who walk into a meeting with the mind set that they're walking into a fight--that they're going to stand their ground and do battle," says Frank Paradise, executive director of the Autism Society of Los Angeles. "The parents who walk in intimidated and meek will not get half of what those other parents get."
What parents want to getis some way to break down the social disconnectedness that lies at the very core of the disorder.
Unknown Causes, Widely Varying Symptoms