Quality of Life Defined by Autistic People: A Thematic Analysis

Abstract

Background:

Autistic adults experience significantly lower quality of life (QoL) than non-Autistic adults. Accordingly, the autism community has identified QoL as a critical outcome for intervention research and person-centered care. However, existing QoL measures, developed without Autistic input, are often inaccessible, vulnerable to neurotypical biases, and fail to comprehensively capture the nuances of QoL as experienced by Autistic people.

Methods:

Our Autistic-led research team completed semistructured interviews with 25 Autistic adults living in the United States. In the present study, we use reflexive thematic analysis to identify themes in Autistic adults’ perceptions of QoL, particularly as it relates to defining Autistic Quality of Life (AQoL) for this population.

Results:

Based on Autistic adults’ conceptualizations of QoL, we developed the following themes: (1) QoL is a complex construct, (2) satisfaction of “needs,” (3) life is worth living, (4) emotional and physical well-being, (5) relationships in all forms, and (6) self-determination. Subthemes include components of QoL that may be unique or more common to the Autistic experience, such as the importance of having access to sensory-friendly spaces or foods, sharing a connection with animals, and being accepted by society.

Conclusion:

Autistic adults shared what QoL means to them and endorsed the importance of components that are not captured by existing QoL measures created by and for non-Autistic people. Results of this study have the potential to inform a novel measure of AQoL that is directly based on Autistic experiences and is co-created with Autistic people. This is a critical need identified by the autism community, as it shapes individualized approaches to care and research.

Community Brief

Why is this an important issue?

Autistic people experience lower quality of life (QoL) than non-Autistic people. However, the surveys we currently use to measure QoL might not be accurate for Autistic people because they were not developed for Autistic people, and Autistic people did not help create them.

What was the purpose of this study?

Our team, a group of Autistic and non-Autistic researchers, wants to create a new survey that accurately measures Autistic QoL (AQoL). To do this, we first needed to find out what QoL means to Autistic adults. That was the goal of this study.

What did the researchers do?

We interviewed 25 Autistic adults. Each interview lasted about an hour. We asked questions such as, “What does quality of life mean to you?” After all interviews were done, our research team identified common themes from the Autistic adults’ responses.

What were the results of the study?

We identified six main themes in Autistic adults’ descriptions of what QoL means to them:

QoL is a complex construct—QoL can include many aspects of a person’s life and may be defined differently based upon a person’s priorities.

Satisfaction of “needs” —QoL is feeling like one’s needs are being met. To some participants, this means having food, water, and shelter. Others mention needs specific to their Autistic identity (an environment that accommodates sensory differences).

Life is worth living—QoL is more than having basic needs met. It is feeling satisfied or enjoying one’s life.

Emotional and physical well-being—QoL is feeling mentally and physically healthy.

Relationships in all forms—QoL is having meaningful relationships with people, animals, and society.

Self-determination—QoL is having the freedom to make choices about things a person does, ways a person spends time, and the way a person’s identity is expressed.

What do these findings add to what was already known?

Autistic adults’ perspectives have largely been left out of QoL research. One important finding from this study is that although there were similarities in themes for how Autistic participants described QoL, the way it was defined and examples that were given varied widely. Having a measure with narrow options may not fully represent QoL for Autistic people. This suggests that a measure of QoL might need to include a section that is tailored to each individual and their priorities.

What are potential weaknesses in the study?

Autistic adults who participated in our interviews communicated through spoken language. In addition, all Autistic participants were living in the United States, and most identified as White women. Non-speaking Autistic adults, or Autistic adults living outside of the United States, or with other racial, ethnic, and gender identities might think about QoL differently than the participants in our sample.

How will these findings help autistic adults now or in the future?

Our findings show that there are components of QoL that are important to Autistic people that are not included in surveys currently used to measure QoL. Knowing these components will help us create a new survey that accurately measures AQoL. It is important to have a way to accurately measure AQoL in research and care settings so that we know the strategies and therapies used are improving AQoL.