Recommending a Systems Approach to Improve Outcomes for People with Autism and Their Families

Recommending a Systems Approach to Improve Outcomes for People with Autism and Their Families

Dec 07, 2021
Doctor talking with patient

Linking customized health care strategies with tailored intervention approaches is essential to improving the lives of people with autism. The Lancet Commission on the future of care and clinical research in autism, which includes Mathematica health policy expert Paul Shattuck, recently released groundbreaking new research on the importance of connecting these strategies and approaches with family- and community-level support systems.

Shattuck and his coauthors emphasized the importance of improving systems of care that assist people with autism across the life span. Autism is a lifelong condition that can impact multiple areas of health, mental health, development, and learning. People with autism and their families often have to navigate seeking help from a variety of health, educational, and social safety nets that shift over time as people age. The report recommends greater investment in the integration and coordination of care across agencies and sectors.

At least 78 million people worldwide have autism, yet many people do not receive supports from or have access to suitable health care, education, and social services. Lack of access to these supports can lead to people with autism experiencing poor outcomes in areas such as educational attainment, steady employment, and long-term health and well-being. In addition to emphasizing improving systems of care, the Lancet Commission has developed several action-oriented recommendations to address these challenges and potentially improve outcomes for people with autism over the next five years.

Their recommendations include the following:

  • Government leaders and public health officials should target resources to address disparities in program access among people with autism, including those who have severe co-occurring conditions and those who are female, minimally verbal, part of minority ethnic groups, or from socially disadvantaged backgrounds.
  • At the community level, meeting the complex needs of people with autism requires coordinating among health care, education, finance, and social sectors, as well as the active inclusion and participation of people with autism and their families.
  • All stakeholders must underscore the urgent need for greater investments in developing and refining practical interventions that are informed by evidence and raise awareness of what works, for whom, and at what cost.

“People on the autism spectrum have dreams to pursue and contributions to make. The systems of care that support them are entrusted to unleash human potential. We must foster progress and better outcomes by implementing systems-wide change across government, health care, and community organizations to more directly meet the needs of people with autism. This landmark report underscores the importance of Mathematica’s growing portfolio of systems and policy work aimed at improving the well-being of people with autism and their families,” Shattuck says.

The Commission’s recommendations are informed by insights from an international group of stakeholders with a range of perspectives, including health care providers, researchers, advocates, and parents of children with autism. Shattuck’s participation on the commission will help inform his role as principal investigator for a related Mathematica project, Research Support Services for Employment of Young Adults on the Autism Spectrum. This project aims to understand barriers to, catalysts for, and promising strategies for improving employment outcomes among young adults on the autism spectrum. This project, and other health-related projects, drives Mathematica’s commitment to using data and evidence to improve public well-being and strengthen outcomes for children and families across the world.