Over the past two years, Autism Speaks has partnered with the Data Resource Center for Child and Adolescent Health to make autism-related statistics and other resources accessible and useful to individuals and families affected by autism. This included the creation of the interactive Pathways to Diagnosis and Services data portal on the Data Resource Center’s website.
Now the center has published a “chart book” to highlight some of the ways that people in the autism community have used and can use the information in the Pathways portal.
Experience Matters: A View into the Health and Wellbeing of US Children and Families with Autism Spectrum Disorder is available for free download. (Follow the title link.)
“Our goal for the new Experience Matters autism chart book is to provide a comprehensive portrait of the rich and complex experiences of children and families with autism,” says Christina Bethell, director of the Child and Adolescent Health Measurement Index. “We are struck by the stories told by the data – of resilience, family impact, health equity and opportunities for improving community systems of care and well-being for these children and their families.”
The book’s format is designed for easy use by families, service providers, policymakers and all who work on behalf of advancing the well-being and quality of care for children and families affected by autism, Dr. Bethell adds.
Stay tuned for the launch of Pathway’s autism-specific portal. It promises to fast-track users to a trove of autism-related information from the Data Resource Center for Child and Adolescent Health. This will include revealing statistics from the National Survey of Children's Health and the National Survey of Children with Special Healthcare Needs
In addition, the portal will invite users to explore the ways that its autism data has already been put into action. Examples include a recently published study documenting higher rates of developmental disabilities among families facing financial struggles and mental health challenges.
“The purpose of this project is to make high-quality, national autism research data easy to access and even easier to use for researchers, policy makers, advocates and even families," comments Michael Rosanoff, Autism Speaks director for public health research. “After all, what good is autism research data if only few can accesses it and even fewer know how to use it?”