Out of the lab and into the home, ATN researchers at Vanderbilt are showing frazzled parents how to solve autism-related sleep issues
By neurologist and sleep researcher Beth Malow, of the Vanderbilt University School of Medicine. The school is a member center the Autism Speaks Autism Treatment Network (ATN).
Dr. Malow co-authored two Autism Speaks ATN/AIR-P sleep tool kits: Strategies to Improve Sleep in Children with Autism Spectrum Disorder and Strategies to Improve Sleep in Teens with Autism Spectrum Disorder. Learn more about these guides and download them free here. Most recently,
Dr. Malow and co-author psychologist Terry Katz published of Solving Sleep Problems in Children with Autism Spectrum Disorders: A Guide for Frazzled Families. Learn more about the book and the Autism Speaks-funded research that contributed to it here.
We spend about one-third of our lives in sleep. While we still don’t know exactly why we need to sleep, we all can relate to how it feels to sleep poorly. We feel grumpy, grouchy, moody and stressed. By contrast, when we sleep well, we are more likely to wake feeling energized and happy.
As many families affected by autism know well, sleep problems are common among those affected by autism. Our studies suggest that 50 to 80 percent of children with autism have ongoing struggles getting to sleep and staying asleep.
We’ve identified a broad variety of causes for autism-related sleep issues. They include medical issues such as seizures and painful gastrointestinal problems. They can also include emotional or mental health issues such as anxiety and depression. For good reason, we urge that any child with chronic sleep issues have a thorough evaluation to address or rule out such problems.
Poor sleep habits are another common but often overlooked cause of disturbed sleep in children with autism. We’ve found that it makes a huge difference when parents take the time to help a child “settle down” before bedtime or after waking in the middle of the night. By “huge difference” I mean in how much better that child will feel and behave the next day. Not to mention how much better the entire family will feel when they’re allowed to get a good night’s sleep as well.
That said, many families have difficulty learning how to instill good sleep habits. And many don’t receive help from their health care providers. Even when sleep problems are serious enough to warrant seeing a specialist, the child may end up on a long waiting list. There simply aren’t enough pediatric sleep specialists to meet the need. What’s more, sleep specialists tend to focus on serious medical causes of disturbed sleep – such as sleep apnea and seizures. They may not be particularly skilled in coaching families on practical strategies to promote sleep, or have the time to do so in their busy practices
Research to address a huge need
From our clinical practice, we knew there was a huge need to help more families with sleep issues. We carried out a study evaluating a program of parent sleep education at four sites within the Autism Speaks ATN. The study was funded through the ATN’s role as the Autism Intervention Research Network on Physical Health (AIR-P).
In this study, physicians first evaluated and treated any medical conditions that could be contributing to disturbed sleep. Then, our educators trained parents how to help their children affected by autism get to sleep and sleep through the night.
Some parents attended group classes (two, two-hour sessions). Others received one-on-one training (one, one-hour session). We followed up the training with check-in phone calls to see how the families were doing and answer further questions.
Over the following weeks, the children went to bed wearing motion-sensitive (actigraphic) watches that measured their sleep-wake patterns. We asked the parents to complete surveys about their children’s sleep, behavior and quality of life.
Overall, we saw a significant reduction in the time it took for the children to fall asleep with both training methods (group or individual). In addition, parents reported that their children were less anxious and more attentive during the day.
The families’ overall quality of life improved. The parents who completed the training also reported a higher sense of satisfaction with their parenting role and viewed themselves as “more effective” as parents. I remember one parent commenting that her child was a “new person,” sleeping well at night and happy during the day.
From research to community outreach
To broaden the reach of this program, we have begun taking our classes out into the communities surrounding our ATN center. We realized that it can be difficult for many parents to travel to a large medical center such as ours to receive this sleep training. In particular, we wanted to reach out to underserved communities.
We received a grant from the Meharry-Vanderbilt Community Engaged Research Core to partner with Mercy Community Healthcare, a practice in Middle Tennessee that serves a large number of uninsured families. This included families from a broad range of ethnic backgrounds.
We are training a Mercy behavioral therapist how to train parents in the basics of good sleep habits in ways that work well for children with autism.
While in-person training is helpful to help address parents’ questions, the content of what we teach is available in both Autism Speaks ATN/AIR-P sleep tool kits and in my new book with Dr. Katz, Solving Sleep Problems in Children with Autism Spectrum Disorders.
For example, we show parents how to create and personalize visual schedules for a bedtime routine. (See below.) We describe the benefits of making a relaxing activity such as reading a part of that activity - rather than a more sleep-disruptive activity like a video game.
Parents also learn the importance of healthy daytime activities such as physical exercise. While these strategies may sound simple, they can be very effective!
Improving effectiveness through further research
In our work, we have also found that some families do great when simply provided with written materials such as the tool kits. Others need the support of a therapist coach. We are seeking funding for research that can help us identify which approaches work best for which families. This will help other health care providers put together sleep plans for their patients with autism.
We will also collect information on the effectiveness of our new community-outreach program. We’ll do so by following up to see how the training improves children’s sleep and daytime behavior. We will also assess benefits to each child’s family.
And this is just the beginning. Going forward, we hope to expand the training to more health care practices that are part of our Vanderbilt Health Affiliated Network, which includes practices throughout Tennessee and surrounding regions.
Through this work, our long term goal is to give all children with autism – and their families – the gift of a good night’s sleep.