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The Collaborative to Improve Care for Children with Autism Spectrum Disorder

At a Glance

What: A quality improvement initiative to make care for children with autism spectrum disorder (ASD) better in three areas: constipation, insomnia and wait time for treatment.

Why: The physical symptoms of autism, specifically constipation and insomnia, are not well understood by the medical community and often overlooked, despite negatively impacting health and behavior of children. Early intervention helps give children the best chance to develop typically, but many centers struggle with long wait times for their patients.

Who: 14 Autism Treatment Network (ATN) sites across North America.

When: October 2010 – December 2013

Funders: The Autism Treatment Network (ATN), a program supported by the national organization Autism Speaks through a grant from the Autism Intervention Research Network on Physical Health (AIR-P).

Background

Autism is characterized by social and behavioral symptoms, though physical symptoms—mainly constipation and insomnia—are also common. Healthcare providers aren’t accustomed to identifying and assessing these physical symptoms in children with autism. And even when physical conditions are recognized, physicians don’t have clear guidelines for diagnosing and treating these patients. (Read more about autism here.)

Click here or on the image at right to view a full version of NICHQ's infographic about the lesser-known aspects of ASD.

Project Overview

From October 2010 – November 2012 the Collaborative to Improve Autism Care for Children with Autism Spectrum Disorder focused on improving the diagnostic experience for parents, reducing wait times, and making a variety of other quality-improvement changes to the 14 sites. Beginning in November 2012, the sites narrowed their focus to work with a handful of patients one-on-one to improve constipation, insomnia and wait times. As sites test and find successful treatments for the physical symptoms associated with autism, they will share best practices and tools on a wider scale to result in meaningful change and improved care for patients and families.

Working with Parents to Improve Care for Children with Autism

Goals and Activities

Working with their parent partners, participating teams have made great progress in improving the welcome packages and materials that go to families of newly diagnosed children. Some teams have also improved care coordination by developing care action plans or after visit summaries that outline main next steps and allow parents to share the diagnoses and recommendations with primary care providers, educators, and other relevant professionals.

The teams will now begin a focused effort to treat families for physical symptoms. Each site will focus on one patient who struggles with either constipation or insomnia. The site will work closely with that patient’s family for three months beginning in November 2012 to treat the problem, relying heavily on more timely communication (potentially by texting or secure email) and rapid tests of change. In the subsequent three months, each site will expand to treating five families with the same level of focus.

After those six months of one-on-one, quality-improvement focused family care, centers will repeat the six-month trial with new families struggling with the alternative physical symptom.

At the same time, sites will examine their processes for setting up appointments and use quality improvement methods to test for positive changes.

Additional Resources

• Learn more about NICHQ's work to improve care for children with autism.
• Read "Parents Help Revamp Autism Treatment Center."
• Read a Q&A with autism expert and pediatrician Dan Coury.
• Watch a video about NICHQ’s autism project.