"They wouldn't have been given the right attention," she said. "Who knows what the diagnosis would have been?"
Due in part to a broader definition of the autism spectrum and better recognition of the disorder, the prevalence of autism spectrum disorders has increased dramatically over the last 20 years, according to the Centers for Disease Control.
In the decade since their diagnosis, Billy and Rachel have made tremendous progress thanks to intensive therapies -- and the rate of children being diagnosed with autism has only continued to grow.
As the population of children and adolescents with autism increases, and budgets shrink, program directors here say they see more and more families seeking the services that made all the difference for Billy and Rachel Irvine.Many of those families, like the Irvines, have more than one child with autism. Most of them fear for the future, as their children grow to adults and age out programs they are entitled to only through age 21.
"Having more kids diagnosed, it's a tough call, because I don't know where the money's going to come from. I really don't," Ms. Irvine said. "That's why I think everybody is so nervous, and they feel like there is such a bleak outlook -- because there is no money to be had, and the numbers keep increasing, and what do you do?"
About 1 in every 110 children in the United States has an autism spectrum disorder, according to CDC figures compiled after a 2006 study of 8-year-olds in 10 different states. On average, the prevalence of autism across the 10 states had grown 57 percent in just four years, from 2002 to 2006.
Part of the growth, and the difference in prevalence from state to state, is likely due to the different ways different communities identify and serve children with autism. But the CDC suspects those differences, and the widening spectrum, account for only part of the increase. With no known single cause for autism, and only risk factors for the disease being identified, what fuels the rest of the increase remains something of a scientific mystery.
Eden II Executive Director Dr. Joanne Gerenser, who has worked with the autism community for 30 years, said part of the increase is clearly explained by the widening spectrum. Asperger syndrome -- which typically involves social challenges but does not affect language or intellectual capabilities -- was added to the spectrum in 1994, bringing in an entire group of people previously not counted.
"The second variable that's clear, is that services appear to be more readily available with an autism diagnosis," Dr. Gerenser said. "I think that some people may be getting a diagnosis for autism for that reason, if their kids were on the fence of being diagnosed with something else."
But the increase also feels genuine, Dr. Gerenser said. The enrollment at Eden II has grown from 15 to 20 children at the start to 150 school-aged children now. "And the list of people waiting for services continues to grow," she said.
That growth, she said, can't be explained by the widening spectrum.
"Eden II serves those kids who are most significantly autistic," she said. "This can't be explained by that expansion into Asperger's, because those kids wouldn't be referred to me."
Dr. Clifford Mevs, medical director at the Elizabeth W. Pouch Center for Special People, also sees many more children for diagnosis and treatment of autism now than he did in the 1980s. "There is definitely an increase, and I think part of it is due to the broader spectrum," he said.
In addition to more children being diagnosed with Asperger's, Dr. Mevs also sees fewer children being diagnosed with communication disorders -- those children are now typically diagnosed with autism, he said.
"The thing to remember is this is a behavioral diagnosis -- unlike strep throat, where we can do a culture," he said.
With therapy -- especially early intervention -- people with autism can live more independent lives.
"We're not curing them," Dr. Mevs said. "We're trying to make them more self-sufficient."
The spectrum ranges from people with normal IQs who, with some supports, will work and live on their own, to people who will need help 24/7 for life, Dr. Gerenser said.
"The $50,000 question is which end of the spectrum is growing?" she asked. "If it is uniformly growing across all ends of the spectrum, then we are going to be in big trouble down the road."
For Ms. Irvine's children -- who are on different spots of the spectrum, with Rachel being a bit more significantly affected by her autism -- intensive behavioral therapy has been the only thing that has helped them. Both Billy and Rachel were polite and friendly with visitors on a recent visit to the family's New Dorp home, talking about how much they like their school, Eden II.
"School's great," Billy said. "I like the teachers, my classmates." He also likes playing Angry Birds on the school's iPad and his favorite toy, the Lite Brite, he added.
Billy is even doing his part to raise money to expand Eden II, as well, and hopes to see the elevator planned for the new building. "I participate in the Eden II Capital Campaign, and donated $60," he said.
Rachel, who is more shy than Billy, said she likes the gym, computer lab, and class activities. "My favorite thing to do is relax," she said.
It was once difficult for Rachel to walk down a hallway without compulsively touching everything she passed, Ms. Irvine said. And there are still challenges for both -- recently Billy had an outburst at school.
"He's very good, but if you saw the condition of that classroom after that outburst, people couldn't believe it," she said.
Without help at school and at home, Ms. Irvine said she didn't know how she would have made it so far. She was pregnant with a second set of twins when Billy and Rachel were diagnosed and began their therapies.
"When they said autism, I felt like I got punched in the stomach," Ms. Irvine said. "I had no idea."
She had thought their speech delays might be due to the twins communicating with each other in their own way, she said. But Rachel, who was diagnosed first, matched everything the doctor described to her -- and so did Billy.
After the heart-wrenching diagnosis came the grueling endeavor of early intervention therapies. Billy and Rachel, who didn't speak until around age 4, met with 13 to 15 therapists over the course a week at home, from 8 a.m. to 6 p.m.
It was hard to work with fussy toddlers all day, but the structure and consistency paid off, she said. Her children learned social skills, were potty-trained, and started speaking. Life skills were the most important thing, Ms. Irvine said.
Another mother once told her, "It doesn't matter if your child can recognize an apple if they can't toilet themselves, or they can't feed themselves, or dress themselves," she said.
If resources dry up in the face of more and more children being diagnosed, Ms. Irvine worries some won't get the help her children did.
"If parents had to take on the financial burden of that solely, without help, probably they wouldn't get the services, because people couldn't afford it," she said. "And the outcome would be disastrous."
Many of the services are offered through a Medicaid waiver, which is slated to change to a managed care model soon. Ms. Irvine worries services could be capped, and parents won't know to fight for more.
"When they're first diagnosed, as their parents, you have no idea what they need," she said. "You're going to pretty much go with what you're being told, and if there's cuts in services and there's not enough out there to give the kids, the kids are going to get less."