Identity Reconstruction and the “Late Autism Diagnosis Effect”

Thursday, October 31, 2024.

A later-in-life autism diagnosis can prompt a significant identity shift.

Research highlights that adults diagnosed with autism often engage in “retrospective re-evaluation,” where they revisit and reinterpret past experiences through an autism lens (Leedham et al., 2020).

This can lead to a cascade of emotions: relief at finally understanding oneself, grief for past misunderstandings, and often a period of disorientation as they reconstruct their identity with this new knowledge.

Studies show that folks with a late autism diagnosis may experience a form of “identity crisis” as they come to terms with the ways autism has shaped their interactions, experiences, and self-concept (Tan, 2018).

This re-evaluation can be empowering but also mentally exhausting as it often means questioning years or decades of one’s life narrative.

Mental Health and Masking

Masking, or camouflaging autistic traits to blend in with neurotypical society, is commonly reported among those diagnosed later in life.

Research reveals that this coping strategy, while often necessary in social or professional contexts, comes at a significant mental health cost.

For example, Hull et al. (2017) found that adults who mask regularly have higher levels of anxiety, depression, and burnout compared to those who don’t, largely due to the cognitive and emotional strain of constantly suppressing authentic behaviors.

These mental health issues are exacerbated in those with a late diagnosis because they may have masked for many years, often without understanding why it felt so exhausting.

In addition, due to prolonged masking, late-diagnosed adults report high rates of “autistic burnout,” a chronic state of exhaustion and sensory overload that can take months or years to recover from (Raymaker et al., 2020).

Social Relationships and Interpersonal Impact

Many adults with a late autism diagnosis reflect on challenges within personal and professional relationships. Research by Crane et al. (2019) indicates that individuals diagnosed later often struggle with feelings of “alienation” in social settings. These adults frequently report that their authentic expressions of self were dismissed or misunderstood, causing them to suppress their needs to avoid conflict.

Romantic relationships are often particularly affected. Research from Livingston et al. (2020) showed that adults with autism often navigate romantic dynamics differently from neurotypical folks, sometimes struggling with non-verbal cues, sensory sensitivities, and communication styles.

For those diagnosed later in life, these difficulties may lead to relationship strain, with some partners misunderstanding autistic behaviors as indifference or emotional distance.

Employment Challenges and Accommodations

Employment presents a unique set of obstacles for adults diagnosed later in life.

Studies show that autistic adults are underemployed or unemployed at higher rates than their neurotypical peers, partly due to the challenges they face in environments that aren’t accommodating of neurodiversity (Hedley et al., 2017).

Furthermore, adults diagnosed later often express frustration that, without an early diagnosis, they may not have had the chance to access educational or vocational accommodations that could have improved their career trajectories.

Research by Remington and Pellicano (2019) found that when accommodations are provided, such as flexible work hours, sensory-friendly workspaces, and clear communication guidelines, autistic adults show high levels of productivity and job satisfaction.

However, for those diagnosed later in life, accessing these accommodations can be challenging, as employers may be less willing to implement changes based on a new diagnosis.

Navigating Stigma and Misunderstandings

Adults diagnosed later in life often confront a unique form of stigma, particularly in navigating the reactions of family and friends. Stereotypes around autism — such as the belief that autistic souls are “always” diagnosed in childhood — can lead to dismissive attitudes or invalidation of an adult’s diagnosis.

Kenny et al. (2016) highlighted the impact of such stereotypes, noting that they contribute to social isolation and decreased self-esteem in autistic adults.

Further, some adults report pressure to “prove” their autism, leading to feelings of inauthenticity or frustration. The social stigma around a late autism diagnosis often stems from outdated beliefs about the disorder, reinforcing the importance of broader education and awareness.

Access to Support and Services

Support services for autism, from counseling to occupational therapy, are often designed for children and adolescents.

Adults diagnosed later may struggle to find appropriate resources, as many support systems are tailored to early intervention models (Moseley et al., 2021).

This lack of specialized services for adults can make it challenging to access therapies and resources that align with their developmental stage.

Recent studies suggest that mental health services and social support are critical for adults diagnosed later in life, as they often require specialized counseling to process their experiences, manage masking behaviors, and address any comorbid mental health issues (Huang et al., 2021).

Tailored adult interventions, particularly those focusing on self-acceptance and coping with late-life diagnosis, show significant benefits in reducing anxiety and depression.

Community and Connection in Neurodiverse Spaces

Many adults who receive a late autism diagnosis report a profound sense of belonging upon connecting with neurodiverse communities.

According to Jones et al. (2017), adults in neurodiverse spaces often feel a renewed sense of self-worth and validation, experiencing a social acceptance that may have eluded them in neurotypical environments.

These communities, whether online or in person, provide a safe space where masking is unnecessary and autistic traits are not only accepted but celebrated.

However, joining these communities can initially feel overwhelming for those adjusting to their diagnosis. Finding resources, understanding new terminology, and identifying with autistic culture requires time and patience. You’ll get there.

Be Well, Stay Kind, and Godspeed.

REFERENCES:

Crane, L., Davidson, I., Prosser, R., & Pellicano, E. (2019). Understanding autism diagnosis in adulthood: A qualitative analysis of the experiences of diagnosed adults. Journal of Autism and Developmental Disorders, 49(2), 235-246.

Hedley, D., Uljarević, M., Bury, S. M., & Dissanayake, C. (2017). Employment programs and interventions targeting adults with autism spectrum disorder: A systematic review of the literature. Autism, 21(2), 182-186.

Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M. C., & Mandy, W. (2017). “Putting on my best normal”: Social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders, 47(8), 2519-2534.

Huang, Y., Arnold, S. R., Foley, K. R., & Richdale, A. L. (2021). Autism and mental health in adults: Exploring the experiences of adults diagnosed with autism later in life. Autism, 25(5), 1225-1235.

Jones, D. R., Mandell, D. S., & Lawer, L. (2017). Community participation of adults with autism: A review of the literature. Journal of Autism and Developmental Disorders, 47(10), 3013-3025.

Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442-462.

Leedham, A., Thompson, A. R., Smith, R., & Freeth, M. (2020). “I was exhausted trying to figure it out”: The experiences of women receiving an autism diagnosis in middle to late adulthood. Autism, 24(1), 135-146.

Livingston, L. A., Shah, P., & Happé, F. (2020). Compensatory strategies below the surface in autism: A qualitative study. Autism, 24(2), 352-363.

Moseley, R. L., Tully, L., & Ventola, P. (2021). Adult services and support for autistic individuals: Needs, gaps, and recommendations. Autism, 25(6), 1710-1718.

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., & Kapp, S. K. (2020). Experiences of autistic burnout: An emerging concept and its implications. Autism in Adulthood, 2(2), 132-143.

Remington, A., & Pellicano, E. (2019). Letting the world in: A review of workplace inclusion for autistic individuals. Autism Research, 12(5), 764-779.

Tan, Q. (2018). Reconstructing identity: A study of autism diagnosis in adulthood. Disability & Society, 33(9), 1413-1429.