Physical and Psychological Health and Quality of Life in Adults with Autism: Role of Self-Determination and Autism Identity
The steep rise in ASD prevalence is resulting in a large wave of individuals approaching adulthood. Although these individuals gain skills as they age, many continue to experience challenges in education, employment, social relationships, and other aspects of adult independence (Levy & Perry, 2011). Additionally, autistic adults face challenges with physical and mental health (Croen et al., 2015). While previous work has identified interrelationships of psychological health, quality of life (QOL), stigma, and autism identity (McDonald, 2017), the relationship of these factors with physical health and with self-determination has received limited study.
To understand the relationships between self-determination and autism identity with physical and psychological health and QOL in autistic adults in order to strengthen the design of programs, services, and interventions for this population.
Thirty-one adults (20 men, 11 women) ages 18 to 35 years (mean = 24.1, standard deviation = 4.7) participated in a multicomponent self-determination program. Participants completed electronic surveys containing demographic questions and measures of health, wellbeing, autism identity, and components of self-determination at four time-points- two time-points prior to the intervention program and two time-points post-intervention. This presentation focuses on the pre-intervention measures. To identify key variables of self-determination and autism identity and minimize overlap, a cluster analysis incorporating a fast-backward variable selection multiple regression procedure was performed. Models incorporated validated measures of physical health (PHQ15), depression (PHQ9) and the World Health Organization Quality of Life Scale (WHOQOL-BREF) along with key variables of self-determination (e.g., Hope Scale -Agency) and autism identity (Autism Spectrum Identity Scale; ASIS) that were identified by the cluster analysis. The ASIS captures constructs including Spectrum Abilities (endorsing that one has autism-specific positive traits), Positive Difference (endorsing that being on the autism spectrum is a different but equally valid way of being), and Changeability (endorsement of the ability to change negative aspects of being on the autism spectrum).
Self-determination and autism identity factors accounted for 58% of the variance in scores on the PHQ15. Lower physical health symptoms were associated with higher Agency (p = 0.038), lower ASIS- Spectrum Abilities (p = 0.007) and higher ASIS-Positive Difference (p = 0.001) scores. Self-determination and autism identity factors accounted for 55% of the variance in WHOQOL-Physical Health, with higher scores in Positive Difference relating to better physical health QOL (p =.006). Self-determination and autism identity factors accounted for 48% of the variance in scores on the PHQ9. Lower depressive symptoms were associated with higher Agency scores (0.0012). Finally, self-determination and autism identity factors accounted for 74% of the variance in scores in WHOQOL-Psychological Health. Psychological health QOL was positively associated with Agency (p = 0.034), ASIS-Positive Difference (p = 0.023), and ASIS-Changeability (p < .001).
Factors related to both self-determination and autism identity are associated with physical and psychological health and quality of life. Programs, services, and interventions designed to improve physical and psychological health and quality of life for adults on the autism spectrum should consider incorporating elements that enhance aspects of self-determination and positive autism identity.