Thursday, May 10, 2007

Why Families with an Autistic Child Need to Celebrate Mother's Day Frequently; Plus Some Suggestions

An Autism Bulletin reader wrote to say that her young child had recently received a diagnosis of "pervasive developmental disorder -- not otherwise specified" (PDD-NOS), and she was eager to learn what she could do to make a difference, not only for her child, but for the autism community as a whole.

There are many answers to this question, but in this post just before Mother's Day, let's discuss one important step that can be easy to overlook: take care of yourself.

Raising a child with autism presents a set of challenges that comes with on-the-job training: the extra demands on your time to learn what's going on here; the skills to ask questions so you can evaluate courses of action; project management and scheduling prowess to arrange for educational and other kinds of services; and more (like maybe there are other people and events in your life needing attention, other children, for example, or spouses, parents, jobs).

This is a stressful life, researchers have found. Two recent studies in the journal Pediatrics from the American Academy of Pediatrics suggest that not only is raising a child with an autism spectrum disorder more stressful than raising a typically developing child -- it's more stressful than raising a child with other kinds of disabilities or special health care needs without developmental problems. A study published in February (see citations below) noted:

The findings reported here support and inform the need to consider family effects in planning for services of children with autism. We found that overall, the most knowledgeable parents and other adult caregivers of children diagnosed with autism reported high levels on several indicators of stress and aggravation.

The second study, just published May 1 in Pediatrics, focused specifically on mothers of kids with autism and concluded that while these moms are "highly stressed and more likely to report poor or fair mental health than mothers in the general population," they also show a great deal of resilience. "Mothers of a child with autism were more likely to report a close relationship [with their child] and better coping with parenting tasks and less likely to report being angry with their child." The researchers add: "this suggests that families use compensatory strategies to maintain family stability in the context of poorer mental health and higher stress." They also say they want to study this dynamic more to understand it better.

Maybe you're living this, and so these research findings are not news to you (or at least not surprising). That's fine. But if that's so, what do parents do to relieve that stress? Not enough, suggest the respondents to the poll question posted here May 4. So far, there have been 40 responses to the question, "How many times have you gone out with your spouse or a friend since Jan. 1?"

The results:

Zero to one time: 58 percent.
Twice: 12 percent.
Three times: 15 percent.
Monthly: 12 percent.
Weekly: 2 percent.

Let's stipulate that this is a self-selected sample, not scientific. But it suggests some parents could use some suggestions for taking more breaks. So here are some suggestions.

1.) Take a little time off, but do it regularly, even if it's alone time. Take a walk. Go to a movie. Tend the garden. Visit a friend. It helps not only to get away from the many demands on your time. The process of looking forward to these short breaks is a positive thing.

2.) Date night. If hiring a babysitter is a problem, make it date day. My wife and I once spent part of a weekday at an art museum while the kids were in school. It took some planning (like scheduling a vacation day), but it was a fun, memorable time to think about art and Isabella Stewart Gardner's life. You could also try the lunch date variation on a school day.

3.) Be a joiner, part 1. If you feel that you need to talk to other parents about what you're going through raising a child with autism, you could consider joining a parent support group. Check with other moms and dads at your child's school, or through your autism services providers' offices.

4.) Be a joiner, part 2. If you want to make sure your time away from home is really time away from home, consider joining a club or organization that does something interesting to you. It could be a book group, or adult soccer team, or religious organization or volunteering. Participating, actively engaging in an enjoyable activity can be restorative and relaxing.

5.) Fill in the blank. It's up to you how you want to spend your free time; just put in the effort to free up that time.

Do you have other suggestions for freeing up time? Submit comments below or e-mail me at michaelsgoldberg AT

Research citations:

From the May 2007 issue of Pediatrics: "Psychological Functioning and Coping Among Mothers of Children with Autism: A Population-Based Study," by Guillermo Montes and Jill S. Halterman, who are affiliated with the Children's Institute of Rochester, N.Y., and the Department of Pediatrics, University of Rochester School of Medicine and Dentistry, respectively. See abstract here.

From February 2007 issue of Pediatrics: "The Relationship Between Autism and Parenting Stress" by Laura A. Schieve, Stephen J. Blumberg, Catherine Rice, Susanna N. Visser, Coleen Boyle, all researchers at units of the Centers for Disease Control and Prevention. See abstract here.


Anonymous said...

Interesting research and thanks for the great suggestions. I agree -- taking regular "breaks" (and having them to look forward to during difficult times) is critical to maintaining sanity.

R.S.F said...

Good research. I teach ECE in KY. Breaks are completely critical.

Read it. Sci fi/ Fantasy. Love it or hate, just please tell me what you think.

Unknown said...


Michael Goldberg said...

That comment is patently false and offensive. It points out how much farther we have to go to bring people around the world up to speed on the origins of autism spectrum disorders. While we still have a lot to learn from all kinds of researchers, one thing is clear: the style of a mother's parenting is not a cause of autism.

Parents and families have enough going on dealing with this condition and don't need comments like yours to remind them they also have to combat ignorance. Unfortunately, it's a fact of our lives.