Putting Insomnia to Bed for Children with Autism
April 16, 2013
by Cindy Hutter
Strategies to Improve Sleep
We all know that when we do not get enough sleep we are likely to become moody, cranky and distracted and find it difficult to listen or even think. Now imagine how difficult life can be for a child with an autism spectrum disorder (ASD) who also suffers from insomnia.
One challenge to caring for insomnia in children with ASD is that its physical symptoms can often be characterized as common behavioral signs of autism and missed by healthcare providers. Another challenge is that many healthcare professionals aren’t trained to treat insomnia in children with ASD.
To address these issues, 14 teams across North America are engaged in the Collaborative to Improve Care for Children with Autism Spectrum Disorders, a project led by the Autism Speaks Autism Treatment Network (ATN) and the National Initiative for Children’s Healthcare Quality (NICHQ). The teams are testing and refining a plan for treating insomnia in children with ASD. The hope is to discover best practices and share them broadly to educate medical practitioners about how best to treat this and other physical symptoms of ASD.
The team at ATN Toronto—which includes Holland Bloorview Kids Rehabilitation Hospital, Surrey Place Centre and SickKids Hospital—is experiencing success with reducing insomnia in patients. About 20 to 30 children are diagnosed with ASD at Holland Bloorview and Surrey Place Centre each month. The team’s technique is to train nurses, who in turn train parents.
“We teach parents how to use the ATN insomnia parent toolkit and help to make the strategies within it more tangible,” says Alyssa Willoughby, the quality improvement (QI) team’s data manager. “Instead of just reading about creating a visual sleep schedule, we provide a schedule and teach parents how to teach their children to follow it.”
The team has found some unique help to make these labor-intensive, customized sleep schedules. The team involved local Girl Guides (similar to Girl Scouts in the US). An autism awareness education session was held for the Girl Guides who then created the sleep toolkits by laminating, cutting and organizing picture symbols into packages.
ATN Care Model Checklist
“Our doctors agree that the toolkit is a great resource, but families often do not have time to make the visual supports,” says Salina Eldon, the ATN site coordinator in Toronto. “By involving the Girl Guides, we were able to get many toolkits made for use in our parent education initiative, and the guides received their community service badge. The autism awareness session was enthusiastically received and the girls came up with great ideas about how to be a friend to someone with autism. The plan is to work with more Girl Guide groups in the future. Increasing awareness and understanding in the community can go a long way in promoting acceptance of people with autism.”
Since joining the project, the Toronto team doubled its score on the ATN Care Model Checklist. The care model is a multidisciplinary approach that aims to deliver efficient, equitable, patient-centered care. Care Coordinator and QI team member Catharine Petta from Holland Bloorview attributes the improvements to the hard work of the team and the hospital management’s support and buy-in for quality improvement efforts.
“Having management support and representation on our QI team has increased our ability to influence care,” says QI team lead Pam Green, RN, from Holland Bloorview.
The team’s family advisory board members are also helping to make changes. “They give us ideas and we try to facilitate what they want and think that other families need,” says Petta. “Having two parents [on our team] keeps you really focused and you feel like you are making a difference for them. And their ideas are brilliant.”
The team continues to work with families to refine its plan for treating insomnia in children with ASD. The team has also begun a parent mentor program at Holland Bloorview and planned a series of monthly “Parent Talks” for parents of recently diagnosed children. The ATN team is committed to working closely with community pediatricians across the city to provide education on different aspects of ASD and treatment for the physical symptoms.