Well-Being on the Autism Spectrum: Relationships Between Identity, Stigma, Self-Esteem, and Quality of Life

Background:  Adults on the autism spectrum experience stigma, and stereotype threat research on other populations suggests stigma exerts direct and indirect detrimental impacts on wellbeing.  Since there are multiple studies reporting undesirable objective and subjective quality of life (QoL) outcomes for adults on the autism spectrum, such as higher unemployment and poorer psychological health, possibly, experiences of stigma have a detrimental impact on wellbeing for adults on the autism spectrum.  Moreover, this impact may be mediated by other factors, such as variation in identification with the autism spectrum and stereotype threat intersectionality.

Objectives:  This study examined how perceptions of stigma, self-esteem, and QoL, both subjective and objective, interrelate and, also, relate to postsecondary outcomes for adults on the autism spectrum.  This study, also, examined whether, and how, variation in identity, as measured by the Autism Spectrum Identity Scale (ASIS), gender, and identification with different diagnostic categories, relates to factors of subjective wellbeing. 

Methods: Over 1000 adults who had a diagnosis of, or identified with, an autism spectrum disorder participated in a national online survey containing the Autism Spectrum Identity Scale (ASIS; McDonald, 2015a) along with other measures of well-being such as stigma, self-esteem, and objective and subjective QoL.  The survey also gathered demographic data, including gender, diagnoses, diagnoses identification preference, age, and postsecondary student and employment statuses.  

Results:  Greater stigma consistently related to poorer outcomes and higher self-esteem related to better outcomes in well-being and postsecondary outcomes of education and employment.  Without exception, higher scores in Changeability related to better outcomes across all of the other factors.  The Positive Difference factor demonstrated a similar pattern; it related to all of the other measures except self-care.  Both women and those who identified with autism reported higher stigma and poorer QoL, but no differences in self-esteem, than men or those who identified with Asperger’s Syndrome, respectively.  

Conclusions:  These relationships may indicate stereotype threat acts as a mechanism to reduce performance and well-being for adults on the autism spectrum.  Although, the DSM-5 has recently collapsed these two diagnoses into a single category, many adults in this study were diagnosed within the DSM – IV criteria.   One rationale for the DSM-5 change was the inability to reliably distinguish differences between these two groups (Hazen, McDougle, & Volkmar, 2013).  Based on that decision, it is surprising to find the consistent differences between these two groups in attitudes of autism identity, stigma, and subjective and objective QoL in this study.  Since adults on the autism spectrum have lower rates of employment and education attainment than the mainstream population, the intersection of being a woman on the autism spectrum is particularly concerning. On a more optimistic note, higher self-concepts of Positive Difference and Changeability may represent important identity strategies to cope with stigma and preserve self-esteem.  Possibly, attitudes which characterize the autism spectrum as a Positive Difference and as Changeable provides some resilience against experiences of frustrations, failures, and discrimination.  Future research should examine causal relationships between these factors.