BY KIMBERLEE RUTAN McCAFFERTY – Dr. Margaret Souders called the author regarding participation in a study whose goal was to see if kids with ASD sleep better with a home-based program adjusted to their individual needs.
I will share with all of you that for a long time I was in pursuit of this elusive dream, first with my eldest son who is severely autistic, and then with my youngest son, who is on the mild end of the spectrum. There were many years I never thought any of us would see eight consecutive hours again, until finally both boys, through a tenacious adherence to routine (and probably just plain old maturity), did learn to sleep through the night, for which their parents are eternally grateful.
At least, that’s what we thought. I have to admit I wasn’t entirely certain how many z’s each boy was getting, so when I was approached by Dr. Amanda Bennett at Children’s Hospital of Philadelphia (CHOP) through the Autism Speaks/Autism Treatment Network about participating in a sleep study, I was thrilled. It seemed there was a way to find out for sure if all our hard work was really paying off for the boys, and I couldn’t wait to participate.
Our “investigator” is Dr. Margaret Souders, PhD and CRNP, who called me about participating in a study funded by the DOD whose goal was to see if kids with ASD sleep better with a home-based program adjusted to their individual needs. It sounded like heaven to me. Dr. Souders told me that studies have shown that up to 66 percent of autistic individuals have sleep problems, and that those problems are often linked with anxiety and hyper arousal issues. Apparently we all need a relaxed heart rate to sleep, and people on the spectrum often have a difficult time bringing down their heart rate. The goal was to create a sleep protocol tailored to the participant by measuring how much a he/she slept, with so that he/she (along with the tired families) would eventually sleep longer and better.
Forty families are participating in the study along with ours, and the study itself will take approximately 11 weeks to conduct. Participation involves filling out a medical sleep history, several questionnaires, having an interview with Dr. Souders, getting several home visits, and maintaining a daily sleep diary for both kids. The really cool part was that each child wore an actigraph, or a small watch-sized computer that measured their movements at night for several weeks, so that we knew down to the minute how much they were sleeping—and how long it took for them to put themselves back to sleep if they awoke.
If you’re thinking “my child will never wear it,” trust me, that was my first reaction too. The actigraph was sewn into my one son’s pjs, and into a t-shirt for my other, and neither complained a bit. According to Dr. Souders, 97 percent of the kids in the study have worn the actigraph without issue. To my absolute delight we found that Justin, my eldest, was sleeping almost 10 hours a night, with infrequent wakings, after which he always went back to sleep.
After years of struggle, that knowledge felt like winning the lottery. I did discover, however, that my youngest son was having enough trouble falling asleep at night to qualify as having insomnia, so we needed to take action with him. We now have changed up his routine. We put him to bed later now, give him a hotter bath, and a massage (I know, there is nothing we won’t do for our kids). And we rock him for a while before he attempts slumber. I got back the results from the actigraph the other day, and our work paid off. While Zach still isn’t getting as much sleep as Justin, the quantity has increased, and he no longer fits the criteria for insomnia.
Victory is sweet. Dr. Souders’s ultimate goal is to train occupational therapists, nurses, and BCBAs to go into the home to help create individualized sleep protocols. I am certain that with the findings from this study, she will be able to realize her dream for families. She strongly feels that while parents need to do some work to help their kids, practitioners also must meet families more than halfway. Most important, in this community which is so devoted to its kids, I am certain she will find many willing participants. If you’re interested in participating in a sleep study, please contact Dr. Margaret Souders at (215)898-1935 •
ABOUT THE AUTHOR:
Kimberlee Rutan McCafferty has written several articles for Exceptional Parent magazine. She is also the author of Raising Autism: Surviving the Early Years, a memoir about parenting her two boys, both of whom have autism. Her new book is available on the web: www.amazon.com