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Research Program in Life Course Outcomes

PROGRAM AREA LEADER:  PAUL SHATTUCK

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 more to autism than brains, genes, symptoms and behaviors. There is an urgent need for more research to understand how life for people on the autism spectrum unfolds across the life span.  We must learn what experiences, in addition to medical and clinical interventions, help or hinder quality of life. Families need this information to better understand what the future holds so they can make better decisions.  Grassroots organizations need this information to raise awareness about problems. Service providers need this information to assess unmet needs, to plan and evaluate programs, and to justify the need for increased funding. Policy makers and funders need credible data to understand the needs of constituents, to decide where to allocate resources, and to determine the return on investments.

The mission of the A.J. Drexel Autism Institute’s Life Course Outcomes Research Program is pioneering 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 care. 

A life course perspective emphasizes the entire span of life and challenges related to the attainment and performance of social roles, shifts in important ecological contexts as people age, the influence of social institutions and social structures on individual development, changes in quality of life, and the accumulation of risk and protective factors over time. A public health perspective on these issues focuses attention on taking action and measuring impacts at community, state, and national levels.

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? Do adults on the spectrum go to college or find work? Can they achieve social success? What kinds of services do people get compared to what they need? New studies will explore ways to improve service systems during the transition out of high school, access to care, timely initiation of early intervention, family impacts, and other topics.

Dr. Paul Shattuck, Director of the Life Course Outcomes Program, is one of only a handful of scholars in the world whose work is wholly devoted to answering these kinds of questions. His published studies have been formally recognized by federal agencies and private advocacy groups as some the most important research in the field. Findings from this work have already helped shape our understanding of autism by equipping families and policy makers with accurate and timely “news they can use.” 

In 2009 Shattuck’s study on the age of diagnosis among children on the autism spectrum was recognized as one of the most important autism studies of the year by both Autism Speaks and the Federal Interagency Autism Coordinating Committee. Shattuck's 2011 study on the use of services by adults on the autism spectrum was recognized as one of the 20 most impactful scientific studies in the field of autism by the Interagency Autism Coordinating Committee. His study about postsecondary education and job outcomes among young adults on the autism spectrum was named one of the Top Ten Autism Research Advances of 2012 by Autism Speaks.

Shattuck’s work has been funded by the National Institute of Mental Health, the National Science Foundation, the Institute for Education Sciences, Autism Speaks, the Emch Foundation, the Centers for Disease Control and Prevention, and the Organization for Autism Research. His research publications have appeared in high-impact scientific journals including Pediatrics, Psychiatric Services, the Archives of Pediatrics and Adolescent Medicine, the American Journal of Public Health, and the Journal of the American Academy of Child and Adolescent Psychiatry. He has also written op-ed pieces that have appeared in leading newspapers including the New York Times.

Dr. Shattuck frequently speaks about autism at scientific meetings and to groups of advocates, family members, service providers, and policy makers. He has also consulted with public and nonprofit agencies on the design and evaluation of services for people with disabilities.

Shattuck’s professional background includes work in the nonprofit sector doing fundraising and developing programs. His education includes degrees in social work, sociology, and postdoctoral training in epidemiology.

Transition to Adulthood for Youth on the Autism Spectrum

Funders: National Institute of Mental Health; Autism Speaks; Organization for Autism Research; Emch Foundation

Using data from a large national study, we describe service needs, social outcomes, postsecondary job and education experiences, and other quality of life indicators.

Predictors of Success in Postsecondary STEM Education and Employment

Funder: National Science Foundation

Using national data, we are looking at the experiences of college students on the autism spectrum who major in Science, Technology, Engineering, or Math (STEM) fields.

Factors Associated with Young Adult Outcomes

Funders: Autism Speaks; Institute for Education Sciences

Using national data, we are looking at the relationship between experiences during high school (like participation in extracurricular activities) and postsecondary life course outcomes (like getting a job or going to college).

National Indicators Project

Funder: Emch Foundation

National sources of data already exist that could provide timely, useful information to benchmark the outcomes of children and adults on the autism spectrum. This Internet-based project will harness this data and communicate nationally relevant findings. We will accelerate the awareness, use, analysis, and understanding of benchmark data across a range of topics that have direct practical application including age of diagnosis and entry to special services; access to services during childhood and adulthood; young adult outcomes like employment and college.