As Autism Cases Rise, Parents Run Frenzied Race to Get Help
By JANE GROSS

RDSLEY, N.Y., Jan. 29 — When Phyllis Lombardi lets her 6-year-old son, Joey, play in her yard here, she cannot take her eyes off him because he is autistic, barely speaks and might bolt into traffic.

But a fence costs more than the Lombardis can afford since they moved to this Westchester County village last year. Ardsley has state-of-the-art autism programs, but also real estate prices that have forced the family into a rental just a block from the Saw Mill River Parkway.

It was desperation that brought the family here from Rockland County, when Mrs. Lombardi joined an army of parents, their frustration growing as their numbers increased, facing a crisis of supply and demand when their autistic children reach school age.

"I can't fix him, so my only peace of mind is to get him the best services I can," Mrs. Lombardi said, echoing mothers from Palo Alto, Calif., to Princeton, N.J. "That's what I have to do to sleep at night."

The mismatch between needs and services is widening, experts say, despite many start-up programs for autistic children. But new schools and additional classrooms have not kept pace with skyrocketing caseloads and growing sophistication among parents about what sort of educational techniques work.

Education — highly structured, virtually one-on-one and thus astronomically expensive — is the one proven treatment for autism, experts say. But it is no guarantee. Examples of exceptional success — and a narrow window of opportunity — have frantic parents trolling the Internet, visiting any school that sounds promising, winding up on waiting lists and often moving or suing their school district to get what they want.

Dr. Catherine Lord, primary author of a 2001 federal report on teaching techniques for autism, estimated at the time that only 10 percent of affected children had access to the proven labor-intensive pedagogy, which can cost a school district as much as $60,000 a year per child. Dr. Lord says there are many indications that the situation is worse today, when schools nationwide are dealing with 120,000 autistic students, up from 20,000 a decade ago.

Some private schools that accommodate a mere 25 children have waiting lists with hundreds of names on them. The best public school programs are besieged. There are not enough certified behavioral therapists, so promising aides are trained in the classroom and then fought over, like prized nannies, by parents seeking after-school and weekend help. Dr. Fred R. Volkmar, an autism researcher and diagnostician at Yale University who has a three-year waiting list to see new patients, said even the wealthy are not protected. "I see mega-mega millionaires and movie star folks who can't find anything to tap into," he said.

A few states — notably North Carolina and Delaware — provide coordinated, seamless services from preschool until the age of 21. But more common is an incomprehensible jumble that parents must decode amid the fog of learning their child's grim prognosis. New York State has exemplary services for preschoolers, paid for by county departments of health, and a dearth of services for students in kindergarten through age 21, whose education is paid for by local school districts. New Jersey is just the reverse. Connecticut, alone in the metropolitan region, offers no Medicaid benefits for the disability. "It's an appalling jumble," Dr. Lord said.