Autistic identity: A systematic review of quantitative research

Abstract

Autism can be considered both a personal and social identity. Identifying the factors contributing to positive Autistic identity development is crucial given the potential implications for mental health and wellbeing. In this systematic review, we aimed to synthesize quantitative literature on Autistic identity to identify the (individual and environmental) factors associated with Autistic identity, and to ascertain the relationship between Autistic identity and mental health and wellbeing. A total of 3,617 studies were screened and 20 met our inclusion criteria. Results indicated that people developed a more positive Autistic identity when receiving external autism acceptance and external support. The association between individual factors and Autistic identity were largely nonsignificant or inconclusive, highlighting the need for broad support that meets the needs of a range of Autistic people, rather than specific subgroups. Importantly, positive Autistic identity was associated with improved mental health and wellbeing. Peer support and/or self‐directed support resources may be valuable mechanisms for supporting Autistic people to cultivate a positive Autistic identity. The evaluation of such support, including the long‐term impacts on identity development, will be a critical avenue for future research.

Psychometric evaluation of the Comprehensive Autistic Trait Inventory (CATI) in autistic and non-autistic adults

“…Recognising the high degree of similarity between diagnosed and self-identifying autistic people brings benefits that extend beyond research feasibility. The formation of an autistic identity, either through self-identification or diagnosis, contributes positively to the mental health and wellbeing of autistic people (Bervoets & Hens, 2020;Davies et al, 2023;Fletcher-Watson, 2023;Leedham et al, 2019;Lewis, 2016;Lilley et al, 2021), facilitating access to appropriate support that can improve quality of life, and shifting perceptions from negative labelling to a more nuanced understanding of personal identity (Arnold et al, 2020;Cerda et al, 2023;Davies et al, 2023;Huang et al, 2022bHuang et al, , 2022aHume & Burgess, 2021;McDonald, 2020;Smith-Young et al, 2020). It is possible, of course, that our self-identifying autistic people may have extensively researched what constitutes autism before/during self-identification.…”

“…However, not all autistic people can (or want to) receive a formal diagnosis, and this seems especially so for specific groups: females, those without intellectual disabilities, multiply marginalised people, people suffering poor access to resources or funding for services or those less likely to be diagnosed in childhood (Anderson et al, 2018;Dababnah et al, 2018;Davis et al, 2022;Lockwood Estrin et al, 2021;Malik-Soni et al, 2022). When access to formal diagnosis is unavailable, autistic trait measures could help people embrace an autistic identity or navigate towards a formal diagnosis (Botha et al, 2020;Crawshaw, 2023;Davies et al, 2023).…”