Life on Their Terms (LOTT): Defining Quality of Life in Neurodivergent Communities

The Life on Their Terms (LOTT): Defining Quality of Life in Neurodivergent Communities research project aims to better understand how quality of life is defined and experienced across different perspectives, with a primary focus on neurodivergent individuals. Existing definitions of quality of life in health care and clinical research are mainly shaped by medical and non-neurodivergent perspectives, which may not fully reflect this populations lived experiences. The study aims to use an accessible, inclusive survey to explore how people describe their well-being, what factors contribute to their idea of a “good” quality of life, and what aspects of quality of life feel supportive or challenging. The survey uses structured response options with open-ended questions to capture trends and personal narratives about autonomy, environment, relationships, and support needs.

Adults (18+) who identify as autistic/disabled/neurodivergent or those who have received a disability diagnosis

Participants can expect a survey with demographic questions and structured response options with open-ended questions to capture trends and personal narratives. The “required” parts of the survey should take around 15-20 minutes.

The goal of the research is to compare perspectives of quality of life across neurodivergent individuals in order to identify themes and differences in how quality of life is understood/experienced. By centering lived experiences and applying a social model of disability framework, the project seeks to contribute to more inclusive definitions of quality of life that may better inform healthcare practices, disability advocacy, and future research practices. Ultimately, the research aims to promote a more person-centered understanding of quality of life that recognizes diverse experiences and includes neurodivergent voices in quality of life measures.