Yes, I’m writing about another recent study about autism: There’s been quite a few reported this week, since a big annual meeting for autism research, the International Meeting for Autism Reseach (IMFAR), is going on right now in San Diego. The research I’m writing about in this post is based on preliminary findings and has yet to be published in a peer-reviewed journal, as the South Korea autism prevalence study that appeared on Monday was. The subject of this study is close to me personally as it’s about the economic “toll” that raising an autistic child has on mothers.
David S. Mandell, an associate professor of mental health services research in psychiatry at the University of Pennsylvia, says that raising an autistic child leads to “substantial underemployment and lost income among mothers,” as reported in Health.com. In some ways, these findings are not really news to me, but a long-time reality. I work full-time; I’m a college professor at a small college with an emphasis on teaching. I’m able to arrange my own schedule of teaching and advising students to suit my teenage autistic son Charlie‘s needs. Thanks to computers and the Internet, I can do a good portion of work at home which means I end up working 24/7. But, when I am home I can put away my laptop when I need to do things with Charlie and then get back to work.
But I’ve known only a few mothers of autistic children, and indeed of children with some of the severe behavior issues that Charlie has, who work full-time. Some women work part-time, sometimes from home, often in jobs (such as aides in a special ed classroom or in other school settings) that allow their work schedules to parallel their child’s.
Dr. Mandell’s research team used data from the U.S. government’s Medical Expenditures Panel Survey to collect data on families, including families with autistic children (though the surveys did not specify where on the autism spectrum the children were). The researchers also looked at data on families who had children with other chronic health conditions (including asthma, attention-deficit/hyperactivity disorder and cerebral palsy) and families with healthy children. Here’s what the researchers found:
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).
What really makes one sit up is when you see the differences in income for families with autistic children, as calculated by the researchers: They earn an estimated $11,900 less a year (that is, 20% less) than families with children with other chronic health problems and $17,640 less (that is, 27% less) than families with healthy kids.
Though I have to say, I’m not surprised. I’m grateful to have my job but, let’s just say, some other colleges and universities can pay their faculty a bit more. I’ve not been able to try for jobs at such places, as the research I’d have to do requires spending long hours in libraries by myself. While I can certainly get everything done for my current job and take care of Charlie, I really have to watch my time: As Mandell specifically notes, being the mother of an autistic child is a full-time job in and of itself, and not just because of the realities of taking care of one’s child. Mandell notes that mothers “spend considerable time serving as advocates within both the health care system and schools to get the care and attention their child needs”; that is certainly true in our case.
(Though I do really want to underscore that many fathers, including my husband Jim Fisher, have made significant changes to their work schedules and lives to take care of their autistic children: Jim rarely goes to conferences or travels any more for his own job; can’t miss his daily bike rides with Charlie.)
Mandell notes that “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.” One respondent, 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, noted the preliminary nature of Mandell and his team’s findings. But he says that, for parents of autistic children:
“It’s extremely hard to find any other child care arrangement to help take care of your child. So many parents of autistic children just have to be with their child.”
This quite describes our current situation. We have no sitters for Charlie: Jim and I are his primary and only carers. We are constantly urged to find someone to help take care of Charlie and we’ve tried; I think we have overarching worries about “something happening.” Certainly there’s not going to be another person besides Jim and me serving as Charlie’s advocates and “case managers” in the immediate future. While there are a lot more programs and services for younger children than there were ten years ago, we’ve found very little for an autistic teenager with minimal language and significant behavior issues. Sometimes we do find a program but, alas, on further investigation, it does not have the appropriate supports for Charlie.
Having said all this, I would like to emphasize that, as difficult as it can be raising an autistic child, Charlie is no burden to Jim and me. He’s our son, a boy with many, many struggles and challenges. While it would be nice to have some more funds in our bank account, our life with Charlie is better than anything money could buy.
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Photo of a father and his autistic on by Big C Harvey
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