When Stacie Sherman was at a restaurant recently with her family, she noticed that a woman at the next table was mocking her 12-year-old daughter, Brielle, who has autism spectrum disorder (ASD) and is non-verbal, for having buck teeth. Though the tormentor, who was with her own daughter, thought she wasn't being noticed, Sherman saw everything and vented her frustrations to her friends on her Facebook page.
"You have no idea what it takes to get her to the dentist twice a year," she wrote in a post addressed to the woman. "You have no idea that it takes four of us to hold her down so the dentist can pry open her mouth and clean those big teeth.You have no idea that I argue with myself every day over whether to get her braces.... You have no idea the process that was laid out for me as they explained what it would take to get braces on her mouth, and told me there was a good chance she would just rip them off her teeth."
As Sherman's story shows, the costs of autism for parents are often both emotional and financial. I am familiar with this issue because my son is on the autism spectrum, though he is high-functioning. For parents, autism presents many challenges large and small.
For parents of children with autism, the costs can add up fast, particularly if they have to hire lawyers to fight their child's school district to get the services they need. Lawsuits over Individualized Education Plans (IEPs) are increasingly common.
"It varies tremendously from state to state," said Dan Unumb, director of the Autism Speaks Legal Resource Center. He noted one case where a district spent $300,000 in legal bills for an IEP suit it lost. "In many cases, school districts will fight this tooth-and-nail."
As financial pressures mount, many parents will sell assets, take out a second mortgage on their homes or even file for bankruptcy protection, sometimes more than once. "Parents will do whatever they can to make sure that their child gets the interventions they need," Unumb said.
Many parents also hire a team of private physical, occupational, speech and behavioral therapists that don't come cheap either. Others spend thousands on alternative therapies that experts have argued are useless. Behavioral therapy -- also known as applied behavioral analysis -- can cost $60,000 annually.
Though 35 states have mandated some sort of autism insurance coverage, these laws don't apply to companies that self-insured that are governed under the federal Employee Retirement Income Security Act (ERISA). which how most large companies operate.
"Because this is such a large part of the market, we have worked with many of these ERISA employers to voluntarily provide coverage for autism benefits to their employees," writes Autism Speaks spokesman Rich Remington, in an email. "A lot of major players in the tech and finance sectors do this: Microsoft (MSFT), Apple (AAPL), Cisco (CSCO), JPMorgan Chase (JPM), Wells Fargo (WFC), Capital One (COF)- just a few examples."
Autism is five times more prevalent among boys than girls for reasons that scientists don't understand. Another mystery about the disease is why New Jersey has more children diagnosed with the condition than any other state. One reason could be that the state has a "mature" network of advocacy and has "greater access to high-quality and education records," said Suzanne Buchanan, executive director of Autism New Jersey.