This Autism Speaks ATN center is developing a model program for training therapists to help families with autism-related sleep problems
By Bethany Drury, ATN research coordinator at Vanderbilt University, in Nashville, Tennessee. Vanderbilt is one of 14 centers in the Autism Speaks Autism Treatment Network (ATN).
As many readers of this column know firsthand, sleep problems are common among children with autism. These issues can include trouble falling asleep, waking up during the night and trouble getting up in the morning.
Expanding expertise outside the ATN
Vanderbilt University neurologist Beth Malow has been studying sleep issues in children with autism for many years. This research has been supported both directly by Autism Speaks research grants and through the Autism Speaks ATN in its role as the federally funded Autism Research Network for Physical Health (AIR-P).
Read more about Dr. Malow’s Autism Speaks-supported work here.
Indeed, many of the sleep strategies that came out of Dr. Malow’s research went into the Autism Speaks ATN/AIR-P Sleep Tool Kits, which she co-authored. (Follow the title link to download these age-specific tool kits free of charge.)
While Dr. Malow sees patients here at Vanderbilt – a major medical center – she has long recognized the importance of training primary care physicians, therapists and other healthcare providers in surrounding communities. Indeed, training community providers to understand and deliver autism-related health care is a core mission of the entire ATN.
Testing a new program for expanding sleep training
Today, I’d like to tell you about a new research study being conducted by Dr. Malow and her colleagues here in Tennessee. Its aim is to develop effective ways to train therapists in parent-based sleep education and build stronger relationships with physician practices in the surrounding area.
This is so important because – like other ATN centers – we want to reduce the long wait times and travel distances so many families face to get autism-related health care services at specialized autism clinics like ours. We believe that we can provide greater access to these services by partnering with doctors and therapists in our surrounding communities. These partnerships also familiarize community healthcare providers with the sleep problems and other autism-related medical issues faced by many children on the autism spectrum.
For this study – supported by Meharry Medical College, Vanderbilt University and the American Sleep Medicine Foundation – Dr. Malow's team partnered with four Tennessee community practices: Rivergate Pediatrics, Hendersonville Children’s Clinic, Goodlettsville Pediatrics and Mercy Community Healthcare.
The primary care providers at each site help identify children who have autism and sleep issues and who would be a good fit for our study.
Participating parents attend three sleep-education sessions at Mercy Community Healthcare or Play Ball Therapy. Dr. Malow’s team provides the sleep training for each of the therapists who lead these parent education sessions.
At the classes, parents learn how to create a bedtime routine for their child. They learn how sleep is affected by many factors including caffeine and exercise. And they learn how to create a comfortable sleeping environment for their child.
Dr. Malow and her team developed these and other strategies and demonstrated their real-world benefit with research supported by the Autism Speaks ATN in its role as the federally funded Autism Intervention Research Network on Physical Health (AIR-P).
Putting the sleep tool kit to work
Importantly, all the parents receive a copy of the ATN/AIR-P Sleep Tool Kit and customize it during the education sessions. Below are examples of some of the tool kit’s visual supports. The parents learn to use them to create visual schedules for their children’s bedtime routines.
For instance, steps in a bedtime routine may include putting on pajamas, using the toilet, washing hands and brushing teeth. Visuals supports can be tailored to each child’s household environment and before-bed activities. Some parents cut out the pictures and place Velcro or tape on the backs so that their child can move them into place on their visual calendars as they complete each step.
The parents then return home to use the sleep strategies they’ve learned in class.
A cool gizmo for the kids
Throughout the study, each participating child wears an actigraphy watch. (See photo at right.) Strapped onto the wrist just like a real watch, these devices record movement while the children are sleeping or awake, providing the researchers with information on each child’s sleep-wake patterns.
More specifically, each child wears one actigraphy watch for two weeks before their parents attend the sleep-education classes. We then collect these watches for a baseline sleep-wake pattern for each child. The children get another watch to wear during the four weeks when their parents are attending the sleep-education classes and trying the strategies at home.
The parents also complete surveys and homework each day. Together with the actigraphy data, this enables our researchers to track how well the parents understand and use the strategies and how well their children respond to them.
We anticipate that the parent training will produce a significant decrease in the time it takes the children to fall asleep at night as well as improve other reported sleep issues. Based on previous research, we also expect that the improved sleep patterns will translate into improved daytime function and attention and decreased hyperactivity and other challenging behaviors.
We also hope to see evidence that parents are gaining practical knowledge and feeling empowered to solve their children’s sleep challenges. One parent who recently completed the study said: “It's not that I didn't know how to dim the lights or about Relaxation Radio, no horse play, getting sunshine…. I knew all that stuff, but I didn't know if I did ALL of that, [the benefits] would be so dramatic!”
Enlisting teachers and therapists
We also ask each child’s teacher or school-based therapist to participate in the study. At the beginning and end of the study, they complete a Therapist Coding Sheet that measures changes in the child’s behavior and a Child Behavior Checklist. The checklist measures classroom conduct, hyperactivity, anxiety, attention problems, aggressive behavior and related issues. This allows our researchers to track changes in the children’s behavior at school in response to their parents using the sleep strategies they’ve learned in class.
Another important goal of this study is to see whether the therapists who learn how to lead our sleep-education classes become comfortable and skilled at using what they’ve learned in their regular practices. This is the aspect of the study that we hope will significantly increase access to care for autism-related sleep issues in our surrounding communities.
As one therapist commented on her participation: “Adequate sleep makes such a big difference in how the whole family functions. Now that I have been trained in sleep hygiene, this is an area that I regularly ask my families about, because now I have a way to help solve some of their sleep problems.”