RESEARCH & OTHER PROJECTS

Overview

Research
Other projects

RESEARCH PROGRAM IN LIFE COURSE OUTCOMES

People on the autism spectrum are valuable members of our communities. They have roles to play, dreams to achieve, and contributions to make.

There is an urgent need for understanding how life unfolds across the lifespan for people on the autism spectrum. Medical and clinical interventions are vital. But we must also learn about the experiences that help or hinder quality of life for people on the autism spectrum, their families, and our communities. Experiences such as transition into adulthood, employment and continued education, living arrangements, and community participation are understudied.




Four interconnected initiatives

Independence and quality of life have many interconnected parts: family well-being, mental and physical health, financial well-being, housing, employment, social participation, college and vocational training. It is difficult to improve just one without paying attention to the others at the same time. We need a holistic approach.

We will foster holistic widespread and sustainable improvement by building four related initiatives. Each initiative is comprised of multiple subprojects.

ANNOUNCEMENTS AND OPEN POSITIONS





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Indicator Initiative

Assessing community and national indicators of services and outcomes.

The Indicators Initiative is collecting and disseminating evidence about outcomes and risk factors for people on the autism spectrum. The online infrastructure for the national monitoring of key benchmark indicators will include a dynamic set of reports, infographics, and fact sheets that describe the needs and challenges facing people on the autism spectrum. Read more about the first in a series of National Autism Report's here. The inaugural report is on transition into young adulthood. The initiative also is launching the “Measuring What Matters” research project to understand what different stakeholders consider a positive outcome in young adulthood.

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Promising Practises Initiative

Examining innovative approaches for creating positive outcomes for individuals on the autism spectrum.

The Promising Practices Initiative is examining programs and policies with the potential for scalability and replication across the country. Some of the areas we’re looking at are postsecondary education, transition to independent living/housing, and corporate-sponsored employment programs.

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Research Leadership Initiatives

Expanding the field of useful research by training additional scholars.

The Research Leadership Initiative is launching programs to train and mentor the next generation of applied researchers studying autism. The initiative is also launching a guest speaker series that features international leaders sharing their expertise on autism.

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Long-Range Studies Initiative

Conducting large-scale studies that discover how life unfolds over a long period of time for people on the autism spectrum and their families.

The Long-Range Studies Initiative has begun projects involving adolescents and adults on the autism spectrum, and their families.

Projects

Autism Transitions Research Project

Outcomes for transition age youth on the autism spectrum are poor across multiple domains including work, postsecondary education access, social inclusion, health and mental health. About 50,000 to 60,000 youth on the autism spectrum turn 18 years old each year. It is imperative to understand the needs of these youth so that we may develop and implement appropriate policies and practices to support a positive transition to adulthood. Despite large investments in research and services for children with autism, young adult health and functional outcomes remain poor on average. The Autism Transitions Research Project is a programmatic series of three studies, each salient to specific subsets of the population and particular service systems. This will yield up to date, useful, targeted and impactful findings that can inform services planning, benchmarking and public policy at a population health level. Taken together, our programmatic series of studies will significantly expand the evidence base on factors associated with healthy life outcomes among adolescents and young adults with ASD in order to improve transition care and services for this population. With a desire to maximize generalizability and the return on research investment.

This research initiative is funded by the Health Resources and Services Administration (HRSA grant # UJ2MC31073) from September 1, 2017 through August 31, 2022.