Experience Matters: A View into the Health and Wellbeing of Children with Autism Spectrum Disorder (2016)

Please note: This webpage includes data resources for national surveys for which there is more recent data and that the CAHMI has not been able to update but that are still relevant. Contact info@cahmi.org for questions or updates.

Autism Spectrum Disorder (ASD) has received increasing attention from both researchers and media in the past decade. Seemingly increasing with every new release of national data, estimates from the 2011/12 National Survey of Children’s Health suggests that more than 1.1 million children under the age of 18 in the United States may have ASD. The experiences of these children and their families are critical for understanding the needs of this vulnerable population.

Developed in partnership between the CAHMI and Autism Speaks, the Experience Matters chartbook represents one of the first national portraits of children with autism spectrum disorder in the U.S.: how they receive their diagnoses, how their daily lives are impacted, and how their families are doing.

This chartbook can be used by the following groups:

• Families: can learn how other families with ASD are doing, and advocate for issues important to them.

• Advocates: can reference the latest family-centered ASD data and disparities in outcomes for their advocacy efforts.

• Policymakers: can understand the scope of needs of their constituent families with ASD.

• Researchers: can learn about the scope of the impact of ASD on the family.

This chartbook can either be read in its entirety, or by topic-specific sections:

• Prevalence of ASD: this section details differing ASD prevalence rates and the key characteristics of families with ASD.

• Diagnosing ASD: this section describes parents’ and health care providers’ role in the early detection efforts and diagnosis of ASD.

• The Child’s Health: this section provides an overview of the health problems experienced by children with ASD.

• Health Care and Related Services: this section explores how families with ASD engage in the health care system to meet their child’s needs.

• School and Social Wellbeing: this section details the personal connections and educational services that meet the needs of children with ASD.

• Coping with ASD: this section explores parental wellbeing and points of view among families with ASD.


Access the Experience Matters chartbook here. 


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