Norra MacReady

May 17, 2011

May 17, 2011 (San Diego, California) — Autism spectrum disorders (ASDs) take a heavy toll on a family's finances, new research presented here at the International Meeting for Autism Research (IMFAR) 10th Anniversary Meeting shows.

Compared with mothers of normally developing children, mothers of children with an ASD were 12% less likely to be employed and earned 39% less annually, translating into a deficit of $11,540 per year. Families that had a child with an ASD had a 27% reduction in overall annual income, for a loss of $17,640 per year.

"This was a huge effect — I wasn't expecting it," lead study author Zuleyha Cidav, PhD, told Medscape Medical News. She presented the findings in a poster session at IMFAR 2011.

Treatment of ASDs is demanding and expensive, but most studies have examined the financial impact in terms of costs to the healthcare system and insurance companies, explained Dr. Cidav, a labor economist at the University of Pennsylvania in Philadelphia. Parents often end or reduce their employment to care for a child with an ASD, but little is known about the financial hit families take as a result. "Lots of studies speculate that these indirect costs are the largest component of the lifetime costs of treating ASDs, but that's all they were: speculation," she explained in an interview. "With my economics background, I decided to examine the empiric data to see what the costs actually were."

With coauthors Steven Marcus, PhD, and David Mandell, ScD, Dr. Cidav compared labor force participation, work hours, and annual earnings of parents of children with an ASD to those of parents with normally developing children and of children with other types of functional disorders. The data were drawn from the Medical Expenditure Panel Survey, "an annual survey that collects detailed information on healthcare use, costs, health insurance, health status, socioeconomic, demographic, and employment characteristics for a nationally representative sample of US households," they explained in their abstract.

Between 2002 and 2008, data were gathered on 67,530 children. Of 47,942 children living with their mothers or both parents, 261 were diagnosed as having an ASD. Sixty-seven percent of mothers of children with ASDs were employed, with mean annual earnings of $20,478, compared with 74% of mothers of healthy children, with mean annual earnings of $26,400.

The mean annual income of families with an ASD child was $69,716, compared with a mean of $73,516 of families without a child with ASD. There were no differences in the percentage of fathers who were employed, the number of hours they worked, or their earnings.

"We need to ask ourselves why this is happening," Dr. Cidav said. "We think parents are dropping out of the labor market to become case managers.

"This is a very important study. We know that families of a child with autism are under a tremendous amount of emotional stress, and what this study shows is that they are also under a tremendous amount of financial stress," said Geraldine Dawson, PhD, chief science officer of Autism Speaks and research professor of psychiatry at the University of North Carolina, Chapel Hill. "In clinical practice, what we often see is that the mother will quit work to stay home and take care of her child.

"A child with autism may see as many as 5 different types of therapists," explained Dr. Dawson, who was not involved in this study. "Someone has to find the therapists, coordinate visits, make sure that progress is being made...it's a full-time job. So it's not surprising to me to see that mothers of a child with autism have a decrease in their finances."

Some clinics have case coordinators: "someone who can be at the helm and coordinate care," Dr. Dawson said. She also called for improved access to care. "Part of the time is spent getting on waiting lists, learning who the appropriate therapist is to see, so we need to do a better job of providing information on how to access care, and better coordination of care, so the parents don't have to take on that job themselves."

Neither Dr. Cidav nor Dr. Dawson has disclosed any relevant financial relationships.

International Meeting for Autism Research (IMFAR) 2011: Poster 116.082. Presented May 13, 2011.

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