OARacle Newsletter

In October 2025, OAR’s Board of Directors authorized funding for eight applied autism research grants. These new research grants, totaling $397,372, bring OAR’s total research funding to $5.8 million since 2002. This article is the third of the previews in The OARacle this year. 

The autism community uses quality of life as a measure of autistic adults’ satisfaction with their lives. Yet the measures of evaluation fail to take into account autistic adults’ subjective experience. Research on quality of life has, instead, historically relied on societal assumptions about what constitutes quality of life, such as full-time employment, rather than reflecting autistic people’s priorities.

An OAR-funded two-year study, Reimagining a Quality of Life Measure Informed by the Autistic Community, will refine and pilot an autistic quality-of-life measure that will be co-developed with autistic adults.

Co-principal investigators, Becca Lory Hester and Shannon LaPoint, Ph.D., will rely on data generated through previous projects, including a survey that captured the elements autistic people consider critical to their quality of life, resulting in 15 categories from 159 participant responses. In a follow-up study, the research team interviewed 25 autistic adults to capture their perceptions of and experiences with quality of life and their evaluations of the 15 autistic quality of life categories. Findings from that study revealed novel quality-of-life domains that are not captured by existing measures, reflecting the importance of a measure co-created with autistic people and designed for autistic people from the start.

In their OAR-funded study, Hector and Dr. LaPoint will assess and refine the autistic quality of life measure by: 

• Examining the content and substantive validity of the measure through: 
  • Convening an expert review panel, including subject matter experts and autistic community members, to evaluate the measure’s content and relevance 
  • Conducting cognitive interviews with autistic community members to explore their interpretation, comprehension, and responses related to the quality-of-life items 
• Refining the autistic quality-of-life measure based on findings from the panel and interviews 
• Piloting the measure with approximately 500 autistic adults

Hector is an autistic professional and a recognized leader in disability-inclusive program development. She has successfully designed and led research-informed initiatives that promote accessibility, equity, and systemic change.

Dr. LaPoint is an assistant professor of special education at Florida State University, conducting research that aims to improve outcomes for autistic adolescents and adults. Dr. LaPoint has expertise in community-partnered research. She is a qualitative methodologist for an Autism Center for Excellence Networks funded by the National Institute of Health and manages several foundation grants.

Methodology

The research team will recruit participants with a range of experiences and demographic characteristics, including race, geographic location, and cognitive abilities. Ten people will serve on the expert review panel and five will participate in cognitive interviews. The research team has relationships with a number of organizations and groups that include autistic people who meet the criteria for the panel and the interviews.

For the pilot, the research team will send recruitment emails to contacts from disability organizations and online advocacy networks, professional networks, and agencies that support people with disabilities. Interested individuals will complete a screening questionnaire to determine whether they meet eligibility criteria.

Experts on the review panel will attend an orientation before reviewing each item in the quality-of-life measure for clarity, accessibility, and relevance, while also providing recommendations for improvement. Teal Benevides, Ph.D., the study consultant, will host two virtual discussions with the expert review panel: one after the research team refines items based on expert feedback and another after the cognitive interviews. The expert review panel will review and vote on changes suggested by the research team to determine the final measure. 

Participants in the cognitive interviews will fill out a demographic questionnaire and be interviewed via Zoom. The research team will use the interviews to determine how autistic adults understand and interpret each item and to identify potential issues, such as how items are worded. 

After each round of expert feedback and cognitive interviews, the research team will refine the items. Once the items are finalized, the research team will create a survey that includes the autistic quality-of-life measure, a demographic questionnaire, and additional measures to determine how well the measure will work for the general autistic population.

Relevance

This study will inform a practical, user-friendly, self-report autistic quality-of-life tool. Autistic community members can use the tool to identify which facets align with their own priorities for a high quality of life. Once an individual completes the tool, it will identify resources and strategies tailored to the individual and their priorities that they can use to improve their quality of life. 

The tool’s adaptability across users and environments will make it particularly valuable. Autistic individuals can use it to reflect on their goals, identify their strengths, and track patterns that affect their quality of life. It can help them reach goals or foster personal growth and empowerment or both. Autistic people with low quality-of-life scores can use it for intervention planning. For example, if an autistic person identifies a particular goal within the tool, such as social connection, for example, and has low scores, they can collaborate with caregivers or professionals, or independently plan to reach that goal. 

Beyond its research and practical implications, the autistic quality-of-life measure has the potential to shape policy decisions. When there is widespread use of the measure across geographic locations and with autistic people with varying demographic characteristics, aggregate data can reveal disparities in service access, unmet needs in specific populations, or factors that consistently result in a higher or lower autistic quality of life. Such data can drive funding decisions and shape training for professionals and caregivers.

Over time, these insights may help dismantle systemic barriers to autistic quality of life and replace them with responsive, equity-focused practices. 

Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.