Personal Identity after an Autism Diagnosis in Adults

Autism is a neurodevelopmental condition characterized by differences in social interaction, communication, sensory processing, and behavior. While often diagnosed in childhood, many individuals do not receive an autism diagnosis until adulthood.

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, an adult autism diagnosis can also lead to increased self-understanding, self-acceptance, and access to support.

The impact of an autism diagnosis on identity is an important consideration for the wellbeing of autistic individuals, especially those diagnosed in adulthood.

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

Key Points

• The study examined relationships between autistic personal identity, diagnostic timing, self-esteem, and wellbeing in autistic adults, particularly those diagnosed later in life.
• Greater time since diagnosis related to less dissatisfaction with autistic identity. More dissatisfaction with autistic identity predicted lower self-esteem, while more autism pride predicted higher self-esteem.
• Qualitative responses supported a post-diagnostic adjustment process, with challenges but increasing self-understanding and acceptance over time.
• The findings highlight the importance of supporting newly diagnosed autistic adults in developing a positive autistic identity.

Rationale

Autism is often perceived as a childhood condition, but many people receive a diagnosis in 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.

Understanding these relationships is important given the high rates of mental health difficulties reported by autistic people (Lai et al., 2019).

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

• RAADS-14: A 14-item screening tool used to identify autistic characteristics, with participants indicating the duration of each symptom or experience on a 4-point Likert scale.
• Rosenberg Self-Esteem Scale (RSE): A 10-item measure of global self-worth, with items rated on a 4-point Likert scale and higher scores indicating higher self-esteem.
• Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS): A 14-item measure of positive mental health, including affective-emotional aspects, cognitive-evaluative dimensions, and psychological functioning, rated on a 5-point Likert scale with higher scores representing higher levels of mental wellbeing.
• Adapted Questionnaire on Disability Identity and Opportunity (QDIO) subscales: Two 4-item subscales measuring personal disability identity, adapted to assess autistic identity. The autism pride subscale captures positive feelings about autism being part of one’s identity, while the exclusion/dissatisfaction subscale reflects negative feelings about how autism affects one’s sense of self and life. Items are rated on a 5-point Likert scale.

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

• Recency of diagnosis (but not age) predicted exclusion/dissatisfaction, with participants feeling more satisfied with being autistic as years passed.
• Exclusion/dissatisfaction predicted lower self-esteem and wellbeing. Autism pride predicted higher self-esteem but not wellbeing.
• Qualitative themes: adjustment process, self-exploration, learning/support needs, responses from others, autism as positive difference, challenges, and feeling part of the autistic community.

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:

• Mixed methods provided both quantitative relationships and qualitative insight into experiences
• Focus on an under-researched group (late-diagnosed autistic adults, especially females)
• Use of validated measures for key constructs
• Inclusion of open-ended questions to capture personal perspectives

Limitations

This study also had some limitations, including:

• Cross-sectional design prevents causal conclusions about identity development over time
• Sample was mostly female, white, and university-educated, limiting generalizability
• Lack of geographic diversity (UK only)
• Autistic identity and wellbeing measures were not developed for autistic populations specifically

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

Keep Learning

Here are some questions for a college class to discuss this paper:

1. How might receiving an autism diagnosis impact one’s sense of personal identity differently across the lifespan (e.g. as a child vs. adult)? What unique challenges might late-diagnosed autistic adults face?
2. In what ways could mental health professionals support the identity development and overall wellbeing of newly diagnosed autistic adults? What specific strategies or resources might be helpful?
3. The study found that autistic identity related to self-esteem, but had less impact on broader wellbeing. Why might autistic identity be more strongly tied to self-concept than overall mental health? What other factors could be important for autistic wellbeing?
4. How might societal stigma and misconceptions about autism impact autistic individuals’ self-perceptions and identity development following diagnosis? What could be done to promote more accepting attitudes?
5. The researchers noted their sample was predominantly female, white, and well-educated. How might the intersection of autism with other identity markers (e.g. gender, race, socioeconomic status) influence post-diagnostic identity experiences? What steps could researchers take to gather more diverse perspectives?