Measuring What Matters: Challenging Assumptions about Autism Outcomes
August 31, 2015
When we think about “outcomes” -- or how things turn out -- for most young adults we usually consider things like employment, higher education, living on their own, and becoming more independent from their families. We also tend to put outcomes into “good” and “poor” camps. For example, having full time employment is “good,” while being unemployed or part-time employed is “poor.” By these standards, we know outcomes are significantly poorer for people on the autism spectrum, even compared to their peers with other types of disabilities (see our National Autism Indicators Report: Transition into Young Adulthood).
There are two problems with the measures we currently use.
First, they are all over the map. Researchers, service providers, and agencies use widely different assessments to measure what they think good or poor outcomes are, most often with no input from adults themselves, families, or communities. These measures don’t reflect the broad range of individuals on the spectrum, including their challenges, strengths, talents, and what they themselves want from their lives. Some tools, such as those used to assess eligibility for services, may vary from state to state or among programs. And they may not capture the long term goals or impact of programs. For example, in a Vocational Rehabilitation program, the measure of success might be job placement, but that job may not last.
Second, thinking of outcomes as good or poor is very limiting. People’s lives and circumstances are much more complex and we need ways to better represent that. What is poor for one person maybe an optimal outcome for another. For example, for a person who did well in high school, a part-time supported, low-paying job might be considered a poor outcome. Yet, for a person with comorbid conditions, such as health conditions that limit ability to work full-time, this same job might be optimal.
Clearly, we need a better way to understand and assess the outcomes of this population so we can work towards improving them and creating a more inclusive society in which people on the spectrum are recognized and valued as citizens. In the Life Course Outcomes Research Program, we believe the best way to do that is to get input from the people most affected by these concerns – young adults on the spectrum and their families.
As a start, we are launching a study called “Measuring What Matters: Understanding the Meaning of Outcomes for Adults on the Autism Spectrum.” We are interviewing young adults on the spectrum, parents of young adults, and professionals who work in key areas of need (such as job assistance or independent living), about what they think are “good” outcomes. We may find that it’s not just our measures that are inadequate, but our assumptions about good outcomes as well. As advocates often say, when you’ve met one person with autism, you’ve met one person with autism. This may mean that the picture of an optimal life varies from person to person. Building on what we find from this research, our goal is to ultimately design better measures that will not only capture a more complete picture of outcomes for young adults, but make a big step toward improving them.
If you would like to learn more about the study and how you can participate, please visit our recruitment page or email us at LCOresearch@drexel.edu.
Collette Sosnowy, Ph.D., is an expert in qualitative research. She is leading several projects, including Measuring What Matters, which aims to understand what stakeholders consider to be optimal outcomes for young adults with autism.