April 2, 2013— -- Zachary Stewart, an 11-year-old who goes by the name of "Bubba," has been thrown out of two schools and has even been punched in the head during ballet class -- all for having the behavior problems associated with autism.
But one of the worst blows to his family is a financial one. His insurance company in his home state of Utah, does not pay for diagnosis or treatment of autism -- a spectrum of disorders that now affects 1 in 88, with five times as many boys than girls.
The bills for Bubba's therapy cost $150 a session, and he does at least one a week.
"We still rent," said Blythe Stewart, 34, of Murray Lake. "We had over $25,000 in savings to make a down payment on a house. Our entire savings was drained. We have claimed bankruptcy twice. Our credit score is 500 and we can't qualify for a mortgage."
Bubba is unable to eat certain foods and he has to have particular kinds of clothes because of his sensory issues, all of which add up, said his mother.
"His grandfather nicknamed him 'Thumper' because he rocked so hard he'd bang his head on the high chair and the crib," said Stewart.
The Stewarts have considered moving out of Utah.
"But it's impossible because of our financial situation," she said. "I've lost more jobs because my son has a meltdown or has an accident in the bathroom at school, and a lot of employers are not understanding about this."
Today, on International Autism Awareness Day, 32 states have required state-regulated health insurance plans to cover autism according to Autism Speaks, an organization that advocates for families.
Autism spectrum disorders are developmental disabilities that can cause significant social, communication and behavioral challenges, according to the Centers for Disease Control and Prevention (CDC). Treatments include behavioral, occupational and speech therapy, and experts say early intervention is critical.
Bills to mandate coverage for care are moving along with success in Hawaii, Minnesota and Nebraska, but Autism Speaks is pushing for a law in all 50 states and calling on Congress to mandate all companies not under state jurisdiction to authorize care.
Many companies who self-insure, like Microsoft and Oracle, have already voluntarily done so, according to Autism Speaks spokesman Rick Remington.
"We are calling on the president for a national plan for autism," he said. "Prevalence is on the rise, and we are calling out the government to say enough is enough."
Matt Bengtzen, who works as a manager in local government in Salt Lake City, has two sons with autism, aged 13 and 10.
"The diagnosis was a struggle for us because it was not covered by insurance," he said. "And I have very good insurance."
"We actually have been pretty fortunate, because our children are on the more functional side of the autism spectrum," said Bengtzen, 37. "It's been difficult, but not devastating."
Still, the family has spent at least $10,000 out of pocket on each child so far.
"The biggest challenge is there is only one provider in the state of Utah who can make an autism diagnosis, and that is not covered by insurance," he said. "There hasn't been a lot of demand to get these kids diagnosed. Once you have a diagnosis, you can access services. That was a big thing for us."
Utah has the highest prevalence rate in country, according to data from the CDC.
"In the last three years, two dozen families have surrendered their kids to the state because they could not afford to take care of them trying to bring them up at home," he said.
Utah is one of 18 states that has not banned the insurance industry from denying coverage of behavioral therapy for children with autism, according to a report in the Salt Lake City Tribune. As a result, some families have moved out of the state.
Private insurance is not the only one to discriminate against autism coverage. Under the military health program Tricare, dependents are entitled to that care under its "extended care health option" or ECHO.
"But It is only available for active duty [members] and falls way below what is medically recommended," said Karen Driscoll, a Marine wife and mother of a 14-year-old son with autism.
"At least once a week a family calls me to ask if there is anything you can do to help me," said Driscoll, 45, whose family now lives in Washington, D.C. "That includes wounded warriors."
Though Driscoll's husband is still eligible for Tricare, he has 28 years of service, and they are now worried about retirement. One family they know paid $100,000 out of pocket for care for their child.
"How do we plan our future?" she asked. "Our son requires tremendous support and assistance as a function of daily living, and it requires a lot to navigate. He will need lifelong care."
"If kids have access to service early on, they are not on the same trajectory," she said. "That's why I fight. Autism can be treated, and when received early, and intensively, the outcomes for that individual are altered significantly."
"We need to provide support for these military families," she said. "After what they have shouldered for a decade, you have to look at autism as well."