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The Economic Reality of Raising an Autistic Child for Mothers and Families

The Economic Reality of Raising an Autistic Child for Mothers and Families

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.

Ouch. 

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.

You can read more about the study discussed above and about autism research discussed at an IMFAR press conference on Wednesday, at Left Brain/Right Brain and The Thinking Person’s Guide to Autism.

 

 

Previous Care2 Coverage

A Shocking 1 in 38 Children May Have Autism, New Yale Study Reveals

 

 

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Photo of a father and his autistic on by Big C Harvey

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34 comments

+ add your own
8:59AM PDT on Jul 12, 2011

Thanks for bringing this tp people's attention.

3:02PM PDT on May 18, 2011

Thanks!

11:11AM PDT on May 15, 2011

Thanks,doesn't look easy.

7:43PM PDT on May 14, 2011

Alison V. you are amazing and a much needed resource to bring homethe truths indicated by the new Korean study. I would say that the choice you made with your spouse to have a family; and realizing the odds that asure you of high probability that another child would also be autistic, are enough for me to reserve a copy of your next book cowritten with your spouse. I believe that you can really help others to overcome.

6:00PM PDT on May 13, 2011

Interesting statistics, however the study really needs to differentiate between the so-called LFAs (low-functioning Autistics) and HFAs (high-functioning Autistics). I dislike the two terms myself, but they are useful in describing the amount of personal care each requires.

For instance, myself, my husband and my daughter are all HFAs. Both my husband and I have good careers and have worked all of our lives. Our daughter is currently in university, studying molecular biology. So many HFAs fly under the radar, never need any sort of care or help, and are not only NOT a drain on the community, but improve the standard of living of all within it.

So it's always a little confronting to me when Autism is portrayed as an unremitting tragedy where the autisic person will need huge amounts of care throughout their entire lives.

10:23AM PDT on May 13, 2011

my ex girlfriend is raising an autistic child. Her main issue has been the school, considering that former superintenant Jean Claude Bizzard wanted to eliminate special education and merge as many as possible intom mainstream class. My ex's son is smart enough for those classes, but lacks the social skills. There is an ocean full of issues when it comes to educating autistic children, and this country is treading water...barely.

9:25AM PDT on May 13, 2011

I have three autistic children and I am a full time mom (of them and my other 3 children.) It is a hard job, but one I am proud to do..the pay could be better though.

7:01AM PDT on May 13, 2011

good article

8:22PM PDT on May 12, 2011

These issues are nothing new to the families with more severely handicapped children and adults - it's all up to the women in the family to make things work. With a larger percentage of our population now affected by these difficulties, it may be that the next question we put to ourselves is, "What kind of culture are we going to create to make space for the needs of people who cannot advocate for themselves?"

7:59PM PDT on May 12, 2011

I am an attorney. I retired at 45 because I could not control my schedule sufficiently to be there when my autistic child needed me, judges being notoriously unsympathetic to such considerations. This is not news to me, and I'm glad to see it acknowledged.

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