By Carli Friedman, CQL Director of Research
A lot more research about autistic people has focused on diagnosis and biology than autistic people’s quality of life. In addition, a lot of research about quality of life uses proxies, asking other people (like family or staff) about autistic people, instead of asking autistic people themselves what they want and need. Autistic people are the experts on their own lives and quality of life should be person-centered; this is called personal outcomes.
For these reasons, the aim of this study was to examine the person-centered quality of life of autistic adults. Given more attention has focused on autistic people’s ‘impairments’ instead of how organizational, environmental, and systemic factors contribute to autistic people’s quality of life, the second aim of this study was to examine the impact of person-centered organizational supports on autistic people’s quality of life. To do so, I analyzed Personal Outcome Measures® interview data from 860 autistic adults from 2018-2023.
I found autistic people had only half of the quality of life outcomes present (50.4%). They were significantly more likely to be safe, healthy, and use their environments, than they were to choose where and with whom to live, choose their services, or have friends (see figure below [more outcomes are available in the manuscript]).
Most and Least Present Quality of Life Outcomes
Autistic people’s outcomes largely paralleled the supports they received, in that those areas that were present more often were where they received more person-centered supports and those least present outcomes were also where they were not provided with person-centered supports. For example, only 51.9% of autistic people were supported to exercise their rights, which is likely why only 53.1% of autistic people had the rights outcome present. In fact, the more person-centered supports autistic people had present, the better their quality of life (see figure below). While there were several disparities in total outcomes, such as among autistic people with behavior support needs, these disparities almost all disappeared when I controlled for supports – it was largely the lack of person-centered supports that caused disparities, rather than the person’s support needs or other disabilities.
The Relationship Between Person-Centered Supports and Outcomes
“Personal outcomes tell us what is important to autistic people, what they value, and what they need. In human services, personal outcomes also play an important role in ensuring services and supports are not only targeted and person-centered, but also improving autistic people’s quality of life. In our field more broadly, personal outcomes can also inform where more systemic and structural changes may be needed. In our study, when we examined personal outcomes, we found while most autistic people were healthy and safe, they were still commonly denied opportunities to exercise their rights, integrate into their communities, form and strengthen relationships, and make decisions about their own lives. While much work remains, our findings also indicate with thoughtful, person-centered services and supports, autistic people’s outcomes improve tremendously. When we listen to autistic people about what they want and what is important to them, and support them in the ways they need, autistic people have better lives” (Friedman, 2025, p. 17).
This article is a summary of the following journal manuscript: Friedman, C. (2025). Quality of life outcomes of autistic adults, including those with multiple disabilities, and the benefits of person-centered supports. Journal of Developmental and Physical Disabilities. https://doi.org/10.1007/s10882-024-10002-8
Autistic People’s Quality of Life Hindered by Low Quality Support, Not their Needs