1. Conclusions/Next Steps Collaborating with the ATN
Family Driven Goals Improve Insomnia in Children and Youth with Autism Spectrum Disorders
K. Sohl1, J. Taylor2, D. L. Coury3, N. Madduri4, P. Green5, A. M. Neumeyer6, T. Katz7, S. E. Levy8 and B. A. Malow9
(1)University of Missouri, Columbia, MO, (2)National Initiative for Children's Health Care Quality, Boston, MA, (3)Nationwide Children's Hospital, Columbus, OH, (4)Vanderbilt University School of Medicine, Nashville, TN, (5)Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada, (6)Neurology and Pediatrics, Massachusetts General Hospital, Lexington, MA, (7)University of Colorado, Aurora, CO, (8)Developmental & Behavioral Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA, (9)Vanderbilt Kennedy Center, Vanderbilt University Medical Center, Nashville, TN
Working collaboratively across North America, to address the physical health of children and adolescents with autism.
Introduction
Sleep concerns are common in children with autism spectrum disorder (ASD).
They affect 50-80% of children with ASD.
Children with ASD commonly experience sleep onset delay, night time awakenings and bedtime resistance.
Healthcare providers identify sleep concerns in only 8% of patients.
AS ATN/AIRP and NICHQ established a Learning Collaborative to Improve Care for Children with Autism Spectrum Disorder (ASD).
Autism Learning Collaborative – Insomnia Team
Thompson Center, University of Missouri
Children’s Hospital of Philadelphia
University of Pittsburg Medical Center
Glenrose Rehabilitation Hospital -Alberta
Hospital for Sick Children – Toronto
Vanderbilt University Medical Center
Lurie Center, MassGeneral Hospital for Children
Methods/Analysis
An “N of 1” approach was used to intensively work with one child to optimize care for insomnia.
Process
Families asked about insomnia
Sleep problems assessed including parental priority and readiness for change
Family-directed goals and feasible strategies were set with the families to try
Families reported data on their goals with up to four metrics.
The site improvement team coached families weekly based on their feedback about their child’s progress.
The seven improvement teams
Met biweekly via webinar to discuss, share learning and review data.
Tested small tests of change with each family and as a group, including families of varying needs and complexity levels.
Developed systems to ask about sleep at each visit and set family goals for addressing sleep concerns.
ASK
ASSESS
ADDRESS
ADJUST
Objectives
Identify a way to improve sleep in children with ASD by collaborating with families.
Identify a systematic process for clinicians to ask, assess, and address sleep concerns and then adjust based on family goals and family reported data.
Conclusions/Next Steps
Sleep concerns are common for children with ASD
Sleep concerns can improve with a systematic approach that includes family priorities and goal
Educating providers about sleep concerns in children with ASD and spreading practical systems is crucial to improving
Results
42 families participated in the Insomnia Stream. Through continuous process improvement, teams developed a system that allowed families to set family led goals and achieve success. Median time to one sleep- related improvement was 5 weeks. Median time to two sleep- related improvements was 7.5 weeks.
Examples of sleep-related improvements include reductions in time to fall asleep, less resistance at bedtime, and decreased night awakenings.
Thank you!
To the faculty and staff who helped children improve their sleep. And to the families who helped us learn and whose dedication will help families in the future.
Acknowledgements
This Network activity was supported by Autism Speaks and cooperative agreement UA3 MC11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. This work was conducted through the Autism Speaks Autism Treatment Network.
Collaborating with the ATN
To obtain access to the ATN Custom Forms or for information on collaborative research activities, please go to:

2. ASK
ASSESS
ADDRESS
ADJUST