Autism Speaks is pleased to spotlight the publication of Solving Sleep Problems in Children with Autism Spectrum Disorders: A Guide for Frazzled Families.
The authors – neurologist Beth Malow and psychologist Terry Katz pioneered the treatment of sleep problems in children with autism through their research and clinical work in the Autism Speaks Autism Treatment Network (ATN) and its federally funded Autism Intervention Research Network on Physical Health (AIR-P).
Their book expands on 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. Both can be downloaded free of charge here.)
Like these tool kits, the new book grows out of the authors’ multi-year studies of sleep problems in children with autism. Recently, Drs. Malow and Katz sat down to answer questions about their book, research and collaboration with parents.
Autism Speaks: How did each of you come to recognize and focus on sleep problems among children with autism?
Dr. Malow: As a sleep specialist with a newly diagnosed child with autism, I was encouraged to apply my expertise to help solve a widespread problem in the autism community. The more parents I talked with, the more I realized how much help that these sleepless families needed. It’s been a tremendous journey.
Dr. Katz: As a psychologist working with children with autism spectrum disorder, I’ve spent countless hours talking with parents about their children’s sleep difficulties. They educated me on how these problems affected the entire family. In turn, they wanted to learn how they could help their children. It’s been incredibly gratifying to work with parents to apply what we learned about the behavioral strategies that can help the whole family get a good night’s sleep.
Autism Speaks: What is the connection between autism and sleep disorders?
Dr. Malow: In brief, there are many reasons why children with autism tend to have problems sleeping – ranging from associated medical conditions such as seizures and GI pain to challenges transitioning to bedtime and calming down their minds.
Autism Speaks: Please tell us about the research that inspired first your Autism Speaks ATN/AIR-P tool kits on sleep and now this in-depth book.
Dr. Malow: In our studies, we showed that the reported link between autism and sleep problems was real. We found that parents could improve their children’s sleep if we trained them in behavioral strategies that work well for individuals with autism. This training proved effective whether the teacher – a nurse or psychologist – delivered it one-on-one or to groups of parents. In addition to improved sleep, we saw improvements in the children’s daytime behavior and in the parents’ sense of competence.
Autism Speaks: What’s the most important thing for parents to remember in approaching sleep problems in children who have autism?
Dr. Katz: Start with small steps. Don’t feel like you have to make lots of major changes all at once. We’ve been so impressed by how one or two steps – like delaying bedtime by a half hour or introducing a visual schedule – can make a huge difference. (See Autism Speaks ATN/AIR-P Visual Supports tool kit here.)
Autism Speaks: Can adults with autism benefit from the strategies in this book?
Dr. Malow: Many of its strategies apply to adults as well as children with autism. Examples include sleep-friendly daytime habits such as limiting caffeine and increasing exercise as well as putting a relaxing bedtime routine into place.
Autism Speaks: When should a family or individual seek professional help for sleep problems?
Dr. Malow: We recommend seeing a sleep specialist when an individual continues to have sleep problems despite the strategies in our tool kits and book. It’s also important to consult a healthcare provider if the individual snores [a possible sign of sleep apnea] or there are concerns about other possible medical condition affecting sleep. We want to stress the importance of a full medical evaluation to check for underlying medical issues.
Dr. Katz: When choosing a sleep specialist, it’s ideal to see someone experienced with individuals who have autism – for example at an autism center. If that’s not practical, we recommend consulting a doctor or therapist who is familiar with autism and its related health issues. Unfortunately, autism specialists are not available in every community. So it can help to bring a copy of our book or one of the Autism Speaks ATN/AIR-P sleep tool kit.
Autism Speaks: Outside of autism clinics such as those in the Autism Speaks ATN, how familiar are healthcare professionals with autism-related sleep issues?
Dr. Malow: We need to do more to educate the broader medical community, as well as school therapists and educators. The Autism Speaks ATN is playing a pivotal role with a major emphasis on community outreach that increases professional awareness of autism’s many co-occurring medical conditions.
Dr. Katz: For example, I recently provided a webinar on the ideas in our tool kits to a school district in Illinois. I know that the Autism Speaks ATN wants to do more of these professional trainings in the coming year.
Autism Speaks: With support from Autism Speaks, you’ve also done studies on melatonin to improve sleep in individuals with autism. Is this something that can be combined with the behavioral strategies in your book?
Dr. Malow: Yes, melatonin has shown promise in helping children with autism ease into sleep. It seems to be synergistic with behavioral strategies. In our studies, we saw minimal side effects with melatonin. That’s important because many individuals with autism can’t communicate when something makes them feel worse.
That said, it’s important to talk with your child’s doctor about any medication – including over-the-counter supplements – that your child is taking. Any medication or supplement – including melatonin – has the potential to interact with other medicines or even mask a serious health condition.
Learn more about the Autism Speaks Autism Treatment Network here.
Find the ATN center nearest you here.
Explore our archive of ATN expert-advice blogs and news stories here.