Receiving a diagnosis later in life can be a significant event, prompting individuals to re-evaluate their self-concept and experiences through the lens of autism.
This process of incorporating autism into one’s personal identity may involve challenges such as coming to terms with being different, navigating social stigma, and finding a sense of belonging within the autistic community.
However, anadult autism diagnosiscan also lead to increased self-understanding, self-acceptance, and access to support.
Theimpact of an autism diagnosis on identityis an important consideration for the wellbeing of autistic individuals, especially those diagnosed in adulthood.
Key Points
Rationale
Autism is often perceived as a childhood condition, but many people receive adiagnosisin adulthood, which can be emotionally impactful (Huang et al., 2020).
Disability identity theories propose that acquiring a condition later in life necessitates accommodating changes into one’s self-concept (Frank, 1993; Charmaz, 1994, 1995). While autism is not acquired, receiving a diagnosis in adulthood could pose similar identity challenges.
Qualitative research indicates identity formation may be difficult for late-diagnosed autistic adults, with earlier diagnosis linked to more positive self-concepts (Cox et al., 2017; Hickey et al., 2018; Leedham et al., 2020).
Having a disability or being autistic is thought to relate to challenges developing a positive self-concept (Gill, 1997). Positive social identity (connection to the autistic community) has been associated with higher self-esteem in autistic adults (Cooper et al., 2017).
However, less is known about personal autistic identity (viewing autism as part of oneself) and how it relates to self-esteem, wellbeing, and diagnostic timing.
This study aimed to examine aspects of personal identity in relation to diagnostic timing and psychological health, to understand the impact of receiving an autism diagnosis in adulthood, and to identify potential ways to support positive identity development post-diagnosis.
Method
This study used a cross-sectional mixed methods survey design. Quantitative data was collected via online questionnaires and analyzed using multiple regression.
Optional open-ended questions gathered qualitative data on participants’ diagnosis experiences, which underwent content analysis.
Procedure
Participants completed an online survey including demographic questions, the RAADS-14 to confirm autism characteristics, measures of self-esteem (RSE), wellbeing (WEMWBS), and autistic personal identity (adapted QDIO subscales: autism pride and dissatisfaction), and an optional open-ended question about the impact of their diagnosis on identity.
Sample
151 autistic adults (77.6% cisgender female, mean age 31.26) from the UK participated. Most were White British, university-educated, and employed.
Mean age of diagnosis was 26.42, with 78.8% diagnosed in adulthood.
Measures
Statistical Analysis
Descriptive statistics, multiple regressions testing diagnostic timing as a predictor of identity, and hierarchical regressions testing identity as a predictor of self-esteem/wellbeing, controlling for demographics, diagnosis factors, and autistic characteristics. Qualitative content analysis of open-ended responses.
Results
Insight
This study provides valuable insight into the identity experiences of late-diagnosed autistic adults.
The quantitative findings suggest that while dissatisfaction with autistic identity may be higher initially after diagnosis, this can decrease over time, highlighting an adjustment process. Autistic identity also seems to play an important role in self-esteem.
The qualitative data enriches these findings, portraying an often challenging but important journey of self-discovery, increasing self-understanding, and connection with others after receiving an adult autism diagnosis.
Together, the findings emphasize the need to support newly diagnosed autistic adults through this adjustment period to foster development of a positive autistic identity and self-concept.
Future research could explore specific identity-based support interventions and examine identity development longitudinally after an adult diagnosis.
Strengths
This study had several strengths, including:
Limitations
This study also had some limitations, including:
Implications
This study has important clinical implications, suggesting that receiving an autism diagnosis in adulthood relates to dissatisfaction with autistic identity, lower self-esteem, and poorer wellbeing, especially initially.
However, autistic identity and self-concept seem to improve over time after diagnosis. This emphasizes the need for post-diagnostic support to aid this adjustment process, help newly diagnosed adults make sense of their identity, and foster a positive self-concept as an autistic person.
Findings also underscore the importance of timely diagnosis, as those diagnosed younger may have more time to positively incorporate autism into their identity.
Clinically, a focus on identity could be a valuable target for improving psychological health in autistic people, especially those diagnosed as adults.
References
Primary reference
Corden, K., Brewer, R., & Cage, E. (2021). Personal identity after an autism diagnosis: Relationships with self-esteem, mental wellbeing, and diagnostic timing.Frontiers in Psychology,12, 699335.https://doi.org/10.3389/fpsyg.2021.699335
Other references
Charmaz, K. (1994). Identity dilemmas of chronically ill men.Sociological Quarterly, 35(2), 269-288.https://doi.org/10.1111/j.1533-8525.1994.tb00410.x
Cooper, K., Smith, L. G., & Russell, A. (2017). Social identity, self‐esteem, and mental health in autism.European Journal of Social Psychology,47(7), 844-854.https://doi.org/10.1002/ejsp.2297
Cox, B. E., Thompson, K., Anderson, A., Mintz, A., Locks, T., Morgan, L., Edelstein, J., & Wolz, A. (2017). College experiences for students with autism spectrum disorder: Personal identity, public disclosure, and institutional support.Journal of College Student Development,58(1), 71-87.https://doi.org/10.1353/csd.2017.0004.
Hickey, A., Crabtree, J., & Stott, J. (2018). ‘Suddenly the first fifty years of my life made sense’: Experiences of older people with autism.Autism,22(3), 357-367.https://doi.org/10.1177/136236131668091
Huang, Y., Arnold, S. R., Foley, K. R., & Trollor, J. N. (2020). Diagnosis of autism in adulthood: A scoping review.Autism,24(6), 1311-1327.https://doi.org/10.1177/1362361320903128
Lai, M. C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., Szatmari, P., & Ameis, S. H. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis.The Lancet Psychiatry,6(10), 819-829.https://doi.org/10.1016/S2215-0366(19)30289-5
Leedham, A., Thompson, A. R., Smith, R., & Freeth, M. (2020). ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood.Autism,24(1), 135-146.https://doi.org/10.1177/136236131985344
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Saul McLeod, PhD
BSc (Hons) Psychology, MRes, PhD, University of Manchester
Saul McLeod, PhD., is a qualified psychology teacher with over 18 years of experience in further and higher education. He has been published in peer-reviewed journals, including the Journal of Clinical Psychology.
Olivia Guy-Evans, MSc
BSc (Hons) Psychology, MSc Psychology of Education
Olivia Guy-Evans is a writer and associate editor for Simply Psychology. She has previously worked in healthcare and educational sectors.
