Under two federal laws -- the Individuals With Disabilities Education Act and the Rehabilitation Act, both passed in the 1970s and revised over the years -- all special-needs children, including those with autism, are entitled to free and appropriate public school educations in the least restrictive environment. And, science shows, the sooner children with autism get treatment, the better their odds of speaking, reading, learning and eventually living independently.
A breakthrough discovery, released Feb. 18 in the online publication of the journal Nature Genetics, could mean that someday medical science might pinpoint the disorder in infancy, or even before birth. Researchers homed in on the genes behind autism, putting an early DNA test within reach.
But today, it's rare for a child to be diagnosed before age 2, even in the best of circumstances. Five years and one month is the mean age at which children with autism are diagnosed, according to an April 2006 study in the Journal of Developmental and Behavioral Pediatrics.
That's a full 13 months, on average, after a child is first brought for evaluation by a qualified professional, says study author Lisa Wiggins, a behavioral scientist with the Centers for Disease Control and Prevention.
Of the 115 children in the study, a quarter were not diagnosed until they entered school -- and even then, it was not the first order of business in kindergarten. Those children were diagnosed at an average of 6 years and 2 months.
The picture is even worse for some minority children. The average age of diagnosis for a black child with autism, according to a December 2002 study in the journal American Academy of Child & Adolescent Psychiatry, was nearly 8; for a Latino child, about 7 1/2 ; and for a white child, about 6 1/4 .
The average annual cost to educate an autistic child in California is $11,907. School districts across the country, many struggling with the basics of teaching all children to read, write, add and figure out where Ohio is on a map, are stymied by the cost of special education.
In the 2003-04 school year, for example, the Las Virgenes Unified School District spent almost $900,000 in legal fees, much of it to resolve one autism-related case that went before L.A. Superior Court, according to a 2005 report prepared by the California Assn. of Suburban School Districts.
In tiny Ojai, with 40 autistic students in its public schools, the district spent $400,000 in 2004-05 on autism-related legal costs, the report found. The collision of limited school budgets and growing numbers of children with special needs is producing not only costly lawsuits, but also delays in treatment and hard feelings all around.
"It turns decent people into ogres," says state Sen. Don Perata (D-Oakland), a former high school teacher who, with Assembly Speaker Fabian Nunez (D-Los Angeles), formed a task force to provide an accurate statewide picture of autism.
"We've seen school systems using every trick in the book, every interpretation of the law, to avoid having to accept financial responsibility for these children," Perata says.
For Pat Grayson-DeJong, an autism specialist at L.A. Unified School District, her job, and passion, is to do just the opposite: Get children the education and services they need as soon as possible.
Her autistic son is 38 now, and DeJong is determined to help make life better for today's parents and autistic children than it was for her family.
"I remember thinking that if someone would just listen to me, if we could just get some help, he could make gains," she says of her son. "I continue to see kids, especially in urban areas, who sometimes don't get diagnosed until they're school-age. We're making progress, but it's very slow."
But she agrees the financial burden is becoming overwhelming. "This disability is costing our districts more than any other disability. Ever," she says.