Thomas Hiltajczuk may look like a typical 4-and-a-half-year-old. He loves to play with his sister, jump on his trampoline and watch The Wiggles. But Thomas is anything but typical. He doesn't speak and he can't tolerate crowds or changes in his routine. Thomas is autistic.
“When he was 15 months old, Thomas stopped talking,” said his mother, Lynn. “He has a twin sister and he wasn't developing like she was. That was when we started to wonder if something wasn't going on.”
Lynn and Jurie Hiltajczuk took their son to a developmental pediatrician. "We didn't think he would tell us he had autism, but that's what they told us," said Lynn Hiltajczuk.
Autism is a complex brain disorder that inhibits a person's ability to communicate, form relationships and interact with people. Few disorders are as emotionally or financially devastating to a family. Over the last decade, the incidence of autism has increased from a rate of 1 in 2,500 children to 1 in 166, some experts say. According to the Centers for Disease Control and Prevention, autism is now the fastest growing serious developmental disability in the United States.
"There's this sense that people have that for the first time they know somebody who knows somebody who has autism and you find that almost anywhere you go," says Thomas Insel, Director of the National Institute of Mental Health. "And just that experience alone suggests that, gee, this is more common that it would have been 10 years ago."
While there is no cure for autism, one of the most promising therapies is Applied Behavior Analysis, or ABA, a system of rewards that breaks down tasks and learning into very simple steps.
In the 1970's, Dr. Ivar Lovaas of the University of California at Los Angeles, showed that 50 percent of autistic children who received 40 hours per week of ABA therapy developed enough skills to eventually become indistinguishable from their peers.
Who will pay?
But for ABA therapy to have an effect, the program needs to be intensive — one child working individually with a therapist for 25 hours or more per week. All this therapy can cost families over $5,000 a month. And most often, the fees are not covered by health insurance.
"While ABA appears to work for some children, how it gets paid for is another question," said Insel. "It's a tremendous financial burden for one family to take on, and we don't want to be in a situaiton where only families with means have children who will recover and be mainstreamed."
Most insurance companies have been reluctant to cover ABA therapy, calling it experimental, investigational and not medically necessary.
"'Medically unnecessary' is a difficult thing to deal with," says Lynn Hiltajczuk. "Does that mean he'll die if he doesn't have ABA? No. But it does mean he won't have a fulfilling life and be part of society. And 'experimental'? There are 30 years of studies that show it's the best thing to do."
'A double whammy'
Adds Jurie Hiltajczuk, "It's kind of a double whammy. Here you're trying to deal with the emotional side of it and then you get hit financially on top of it."
That's why the Hiltajczuks started their national campaign to get ABA covered by insurance. Jurie is a federal employee and the group has begun their effort by targeting the federal employees health plan.
"Insurance companies love to avoid their responsibility," says Rep. Chris Smith, R-N.J., chair of the Congressional Autism Caucus. Smith is pushing insurance companies within the federal employees system to cover ABA therapy.
"We can be trend setters as to what a minimum benefit should include, and then there's the peer pressure that if federal programs covers it then why isn't it a benefit for everyone in corporate America?" says Smith.
After dozens of phone calls, CNBC was unable to find an insurance industry representative willing to speak on camera about ABA coverage. However, the American Managed Behavioral Health Care Association, a trade organization for mental health care coverage, said member companies have reviewed ABA and have determined that the treatment has not yet been proven to be effective.
"It's bad enough you have the emotional part, but then when you start dealing with the financial, and the fights, and the just trying to get the care for your child, it just wears you down in a way that was unimaginable before his diagnosis," says Lynn Hiltajczuk.
(CNBC special projects producer Alison Tepper-Singer contributed to this report.)