Friday, March 23, 2012

Autism's burden is reflected in family incomes, study says

Raising children brings financial challenge for many families, but especially for parents of children with autism. And the magnitude of that burden is a lot bigger than you may think.

A new study in the journal Pediatrics finds that overall earnings in families with children with autism are 28% ($17,763) less compared to families whose children do not have health limitations, and 21% ($10,416) less compared to families with children with other health limitations.

The dichotomy is striking in the mothers' income: Mothers of children with an autism spectrum disorder tend to earn 35% less than mothers who have children with different health limitations - in fact, $7189 less - on average. Compared to mothers of children who do not have health limitations, those with autistic children earn 56% less, which translates to an average difference of $14,755. There was no average difference in fathers' incomes, however.

Families in which a child has an autism spectrum disorder are 9% less likely to have both parents working than other families.

About 1 in 110 children in the United States has an autism spectrum disorder.Autism is a developmental condition characterized by difficulties in social interaction, language and behavior; symptoms usually start before age 3. There is no cure for autism, and behavioral interventions are quite costly. But experts say earlier treatment is better.

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.

Using a large nationally representative survey, researchers identified 261 children with autism spectrum disorders. They also included 2,921 children with another health limitation and 64,349 children without a health limitation.

The income discrepancy among families with a child with autism is likely due to mothers leaving the workforce and taking lower-paying jobs, said study co-author David Mandell.

These mothers aren't just staying at home to take care of their children with autism, says Mandell, associate director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania. 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.

"It’s not that caring for a child with autism is more difficult per se than caring for a child with cerebral palsy, for example, or intellectual disability," said Mandell, associate director of the Center for Autism Research at Children’s Hospital of Philadelphia. "But the service system for kids with autism is not as well defined. There’s not as much appropriate treatment available for these kids."

Mandell and colleagues thought that fathers' income might be higher in families with children with autism, to compensate for the mothers' loss of income. But they found no average difference compared to other families in the study.

"There’s a big cost of not providing care to children with autism. That cost is going to manifest in different ways," Mandell said. "One of the things that’s going to happen is: It’s going to create an economic hit for society as a whole in another domain."

The study results are no surprise to Peter Bell, executive vice president for Programs and Services at Autism Speaks. Bell was not involved in the study.

Bell's 19-year-old son has autism. When the family got his diagnosis in 1996, Bell and his wife created a home program for their son with six to seven therapists coming in every day, providing one-on-one behavioral treatment. "Literally it was like running a small business ourselves," he said.

Many children with autism additionally have to travel to speech and occupational therapy sessions.

"It does require at least one person to almost be dedicating their full time effort, which is again, what is coming out of this study," Bell said.

Sometimes parents of children with autism can return to the workforce, depending on the needs of the child. Some go to work for Autism Speaks, Bell said. In other cases it's not possible. Bell's wife left the workforce in order to help her son with autism, and has never returned.

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.

But there is a provision in the federal health care reform legislation, taking effect in 2014, that will require state insurance exchanges to include behavioral health treatments as one of the essential benefits.

Autism speaks offers this 100-day toolkit for families of a child with newly diagnosed autism.

There are some limitations to the Pediatrics study. First off, the children with autism represented a small fraction of the total considered. Also, it is an observational study, and it does not show that autism causes this income discrepancy.

But to Bell, it is a confirmation of what he has been seeing in the community for more than a decade.

"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."

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