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.
Families need this information to make better plans and decisions.
Grassroots organizations need this information to raise awareness about problems and build support for solutions.
Service providers need this information to address unmet needs, plan and evaluate programs, and justify funding.
Policy makers and funders need credible data to understand the needs of constituents, allocate resources, and measure impact.
Life Course Outcomes Research Program Mission and Goals
We pioneer population- and community-level research that empowers people and organizations to improve the quality of life for people on the autism spectrum and their families by informing and assessing programs, policies, and systems of support.
A “life course” perspective looks at the entire span of life and emphasizes challenges related to quality of life. A public health perspective focuses attention on taking action and measuring impacts at community, state, and national levels rather than on individual clinical treatments.
Studies in the Life Course Outcomes Program are aimed at answering a range of important questions.
Are children getting diagnosed and entering needed services at an early age?
What kinds of services do people need compared to what they get?
How do we improve outcomes from the transition out of high school?
Do adults on the spectrum go to college or find work? Can they achieve social success?
How do we track family financial and caregiving impacts?
Four Interconnected Initiatives
Independence and quality of life have many interconnected parts: family well-being, mental & 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.
Indicators 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.
Promising Practices 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.
Research Leadership Initiative: 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.
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.
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.