The study, published Monday in the journal Pediatrics, finds that families of children with an autism spectrum disorder earn 28 percent less than families whose children have no health problems, and 21 percent less than parents of kids with other health limitations.
Women whose children have an autism spectrum disorder make 56 percent less than moms whose children have no health problems, and 35 percent less than those whose kids have other health issues.
The gap is mainly due to mothers not having a job or working fewer hours, researchers found.
“The needs of children with autism really straddle a number of service systems and there is a tremendous amount of finger pointing in terms of who’s going to pay,” said David Mandell, associate director of the Center for Autism Research at The Children’s Hospital of Philadelphia.
These mothers aren’t just staying at home to take care of their children with autism, says Mandell, they’re on the phone arguing with their insurance company about getting services, going to multiple meetings about school, and shuttling kids from provider after provider.
“Mothers are leaving the workforce to cobble this care together for their kids,” he added.
A person with autism costs an average of $3.2 million to society over his or her lifetime, according to a 2007 study. Adult care and lost productivity are the biggest sources of that amount.
Researchers wanted to look at the cost from a different angle: The effect on family earnings. “People talk a lot about the cost of treating autism, and they’re mostly talking about the healthcare and educational costs,” Mandell said. “What this study gets at is ‘What’s the cost of not treating autism?’ ‘What does it cost families?’ That is what this shows.”
There’s also the issue of insurance. As the study notes, “private health care insurance companies frequently severely limit or do not cover autism-specific therapies.” There are some 26 states that have mandates requiring coverage for autism treatment, but only about half the people in those states are in insurance plans subject to the mandates, Mandell said.
Guillermo Montes, a researcher at St. John Fisher College in Rochester, New York, said the new study shows families with children with autism make different financial decisions than others. “By putting their kids first, these decisions result in lower and more unstable family income,” Montes said.
“State legislatures, employers and the federal government have to engage these families in a conversation about how to best assist them,” he added. “Any assistance must preserve work flexibility and the wide variety of work and care arrangements which are key to achieve a work-family balance that works for kids with autism, their siblings and their parents.”
“We don’t think that autism creates more of a strain on the family per se than other chronic conditions of childhood,” said study researcher David Mandell, associate professor of psychiatry and pediatrics at the University of Pennsylvania School of Medicine. “I think the reason these mothers are leaving the workforce is because the service system for children with autism is so fragmented,” Mandell said.
The study results are no surprise to Peter Bell, executive vice president for Programs and Services at Autism Speaks. “This should be another reminder to the federal government and state government that autism is a significant public health challenge,” Bell said of the study. “It is an emergency.”