The Collaborative to Improve Care for Children with Autism Spectrum Disorder

  RECENT NEWS
Autism Spectrum Disorder


April 15, 2014
Setting Goals with Families Leads to Greater Success

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December 12, 2013
Wait Times for Autism Services Cut in Half without Adding Staff
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August 13, 2013
Insomnia Treatment Plan Helps Daughter with Autism
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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.

Autism Uncovered - A Closer Look at the Lesser-Known Aspects of ASD

When: October 2010 – February 2014

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


Video Summary: In NICHQ’s Autism Collaborative project, teams across North America are using quality improvement techniques to better the care of children with autism. A key component of this work is partnering with parents of children with autism to guide the improvement process. Parents and providers share their stories of success through the collaborative.

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.

  • Watch a video that summarizes the University of Missouri team's proudest achievements after almost three years of collaborative work. 

Parent and Provider Resources

Constipation Action Plan [PDF, 629KB]

  • The Children's Hospital of Los Angeles (CHLA) developed this action plan for children with chronic constipation, which providers and parents can use to monitor and treat children’s constipation at home. This PDF also includes tips and recipes for reducing constipation along with instructions for using the action plan.
  • Please direct any questions about the plan to Larry Yin (lyin@chla.usc.edu), Lead Autism Specialist at CHLA’s Boone Fetter Clinic.

Guide for Managing Constipation in Children [Request a Copy]

  • The ATN/AIR-P developed this guide that includes additional tips and resources related to constipation management in children with autism. Many of the teams in NICHQ's autism collaborative used it in their work that focused on children with constipation.
  • Providers and parents may request a copy of the guide through the link provided above.

Additional NICHQ 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.

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