WEDNESDAY, May 11 (HealthDay News) -- Autism takes a grim economic toll on families, resulting in substantial underemployment and lost income among mothers, University of Pennsylvania researchers find.
This means that health care costs for a child with autism, however high, are only part of the equation, and the labor market squeeze on families should be considered whenever policymakers fund autism care, researchers suggest.
"Mothers are taking lower-paying, more flexible jobs, so that they can spend more time taking care of their autistic children," said researcher David S. Mandell, an associate professor of mental health services research in psychiatry.
This occurs more in families that include children with autism spectrum disorders than in families with children who have other health problems, he said.
"It is not because autism is more impairing to the child than some of those other health limitations, but the system that cares for children with autism is so fragmented it requires mothers to act as case managers for their children in a way that doesn't happen with children with other disorders," Mandell said.
Mothers of children with autism spectrum disorders spend considerable time serving as advocates with both the health care system and schools to get the care and attention their child needs, he explained.
The findings of the study were scheduled to be presented Wednesday at the International Meeting for Autism Research in San Diego.
For the study, Mandell's team, led by postdoctoral fellow Zuleyha Cidav, used the U.S. government's Medical Expenditures Panel Survey to collect data on families that included children with autism spectrum disorders. To compare labor market costs, the investigators also collected survey data on families who had children with other chronic health conditions and families with healthy children.
The data set had some built-in limitations. Although the survey didn't allow the researchers to see what the other chronic health conditions were, Mandell suspected that they included problems such as asthma, attention-deficit/hyperactivity disorder and cerebral palsy.
Also, the survey data did not indicate which specific autism spectrum disorders these children had, Mandell reported. However, he said the data likely included children diagnosed with autism and Asperger's, among other disorders.
The researchers found mothers of children with autism spectrum disorders were 5 percent less likely to have a job than the mothers of children who had other chronic health problems, and 12 percent less likely to have jobs than mothers of healthy kids.
Moreover, the mothers of children with autism spectrum disorders earned about $6,300 less annually than mothers of kids with other health conditions and $11,540 less than mothers whose kids were healthy.
In contrast, the fathers of children with autism spectrum disorders suffered no significant difference in employment or income compared to that of other fathers, Mandell's team noted.
The researchers also found that labor force mothers of children with autism spectrum disorders worked slightly fewer hours (34 compared to 35 hours), while fathers of children with an autistic disorder worked slightly more hours (46 versus 44 hours).
The overall findings mean that families with children with autism spectrum disorders earn an estimated $11,900 less a year than families with children with other chronic health problems and $17,640 less than families with healthy kids. This translates to 20 percent less than families with kids who have another chronic disease and 27 percent less than families with healthy children, the researchers said.
"The labor market costs associated with having a child with autism are very substantial -- more substantial than with a child with other health limitations," Mandell said. "When we are thinking about developing workplace policies and insurance policies we have to take those costs into account; otherwise, that's a huge economic toll for the U.S. in general."
Commenting on the study, Dr. Jeffrey P. Brosco, a professor of clinical pediatrics at the University of Miami Miller School of Medicine and the associate director of the Mailman Center for Child Development, said the data is very preliminary.
"But there is a lot of research in the past that says the stress on families with children with autism is extraordinary and is even greater than that of other chronic conditions," he said. There is also a study that shows that family income goes down by about 14 percent when there is an autistic child, he added.
Brosco thinks parents of children with autism know their children well and know the best way to care for them. "It's extremely hard to find any other child care arrangement to help take care of your child," he said. "So many parents of autistic children just have to be with their child."
Having a child with autism puts an enormous burden on families, Brosco said. "It affects them in all aspects of their lives, and it wouldn't be a surprise if employment ended up being one of them," he added.
Because the study was presented at a medical meeting, its findings should be considered preliminary until published in a peer-reviewed medical journal.
For more information on autism, visit the U.S. National Institute of Neurological Disorders and Stroke.
SOURCES: David S. Mandell, Sc.D., associate professor of mental health services research in psychiatry, University of Pennsylvania, Philadelphia; Jeffrey P. Brosco, M.D., Ph.D., professor of clinical pediatrics, University of Miami Miller School of Medicine, associate director, Mailman Center for Child Development; May 11, 2011, presentation, International Meeting for Autism Research, San Diego
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