Self-identifying as autistic means recognizing and accepting that one’s traits, experiences, and way of being align with the characteristics of autism, even without a formal clinical diagnosis.
People may self-identify as autistic for various reasons, such as facing barriers to accessing a professional assessment, finding that the label helps them make sense of their lifelong experiences of difference, or connecting with the autistic community and identity.
Self-identification can be an important step in developing a positive autistic identity and accessing support, regardless of formal diagnostic status.
As increasing numbers of adults self-identify as autistic, it is important to understand and validate this phenomenon as a meaningful part of the diverse lived experiences of autism.
Overton, G. L., Marsa-Sambola, F., Martin, R., & Cavenagh, P. (2023). Understanding the self-identification of autism in adults: A scoping review. Review Journal of Autism and Developmental Disorders, 1-21. https://doi.org/10.1007/s40489-023-00361-x
Key Points
- The main findings of this scoping review are that adults are increasingly self-identifying as autistic and often face barriers to obtaining a formal autism diagnosis.
- Key themes identified included: the diagnostic process from a client’s perspective; the process of self-identifying as autistic over the lifespan; autistic identity; sexual identity and experiences of autistic individuals; and perceptions of autism as a difference vs. disability.
- Factors like lack of autism understanding among healthcare professionals, cost and wait times for assessments, misdiagnoses, and personal barriers like fear of disbelief significantly affect adults’ ability to obtain a formal autism diagnosis after self-identifying as autistic.
- The research, while enlightening, has certain limitations such as relying predominantly on online survey data collection and having higher proportions of female participants. More diverse research methods and participant demographics could strengthen the findings.
- Understanding the self-identification of autism in adults is important for improving access to diagnosis and support services. The findings have implications for clinical practice and autistic identity development.
Rationale
It is now recognized that autism may not be diagnosed until adulthood in some cases (Lai & Baron-Cohen, 2015). However, many adults report barriers to obtaining an autism diagnosis (Jones et al., 2014; Lewis, 2017).
At the same time, increasing numbers of adults are self-identifying as autistic (Lewis, 2017), potentially as an alternative path when faced with barriers to clinical diagnosis (Lewis, 2016b).
A formal autism diagnosis can help adults better understand themselves and access needed supports (Moore, 2016). However, little research has examined the process and impacts of self-identifying as autistic for adults with or without a subsequent formal diagnosis (Lewis, 2016b).
Understanding this emerging phenomenon is important for improving diagnostic and support services for autistic adults.
This scoping review aims to synthesize existing research on self-identification of autism in adults and identify aspects that could enhance the adult autism diagnostic process.
Method
This scoping review followed the methodological framework outlined by Arksey and O’Malley (2005) and Peters et al. (2015).
Four online databases (PsycINFO, CINAHL Complete, MEDLINE Complete and APA PsycArticles) were searched using variations of keywords related to self-identification, autism, and adults.
The inclusion criteria were: research involving participants aged 16+; participants who self-identified as autistic with or without a formal diagnosis; published in English between 2000-2021; and published academic literature. Grey literature was excluded.
The authors engaged in an iterative process to define the search strategy, discuss discrepancies, and synthesize the findings.
After duplicates were removed, the first author screened titles and abstracts, then conducted a full-text review to determine eligibility. The second author reviewed the decisions. Reference lists of eligible articles were also checked. The first author extracted key data from each study into a table.
Thematic analysis was conducted to categorize the studies and numerical analysis examined study characteristics.
Results
Thirteen articles published between 2013-2021 were included in the final scoping review. Most utilized a qualitative (n=5) or quantitative (n=4) approach, with three mixed methods studies and one theoretical framework. Studies were conducted mainly in the USA (n=7) and UK (n=6).
Five main themes were identified:
1. The diagnostic process from a client’s perspective
Studies found adults faced difficulties verbalizing their reasons for self-identifying as autistic to healthcare professionals, who often lacked understanding of adult autism presentations.
Misdiagnosis and dismissal of self-assessments were common barriers.
Some studies aimed to improve the diagnostic process through dimensional assessments of autism traits.
2. The process of self-identifying as autistic from a lifespan perspective
Beginning in late childhood/early adolescence, individuals noticed differences from peers in how they understood themselves and the world.
Self-identification often followed prompting from others and extensive self-directed research.
While some found self-identification sufficient, others pursued formal diagnosis for validation and support access.
3. An autistic identity
Self-identification, more so than professional diagnosis, was linked to viewing autism positively as an identity.
Formal diagnosis aided identity acceptance for some. Positive autistic identity correlated with better psychological wellbeing.
4. Sexual identity and experiences
Autistic adults were more likely to identify as LGBTQ+. Autism complicated sexual identity development and expression.
Sex education programs need to consider neurodiverse perspectives.
5. Perception of autism as a difference vs. disability
Autistic adults preferred framing autism as a difference rather than a medical disorder or disability.
Awareness of the neurodiversity paradigm, more than formal diagnosis, predicted this preference.
Across studies, adults who self-identified as autistic without a formal diagnosis tended to have very similar results as formally diagnosed participants.
Most studies had higher proportions of female or assigned female at birth (AFAB) participants.
Insights
This scoping review provides important insights into the emerging research on self-identification of autism in adults.
It highlights that self-identification is an important part of a “lifespan perspective” on autistic identity development, often beginning with noticing differences from peers in late childhood or adolescence.
The process is facilitated by prompting from others and self-directed research. While some find self-identification sufficient, others pursue formal diagnosis for validation and support access.
Healthcare professionals’ lack of awareness of adult autism presentations and dismissal of self-assessed autistic traits are major barriers to diagnosis after self-identifying. Misdiagnosis is also a common barrier.
Improving clinicians’ understanding of self-identification and dimensional trait assessments could improve the diagnostic process.
Self-identification appears to foster a positive autistic identity more than professional diagnosis alone, and a positive identity correlates with well-being.
Autistic adults also reframe autism as a form of diversity rather than medical disability. This aligns with the neurodiversity paradigm.
The findings also reveal the intersection of autistic and LGBTQ+ identities, with self-identified autistic adults more likely to identify as sexual minorities. This has implications for making sex education and sexual healthcare more neurodiverse-friendly.
Overall, this review extends our understanding of self-identified autism as an identity-related phenomenon, not just a diagnostic category.
It suggests autism-affirmative clinical practices should put more credence in self-assessment and support autistic identity development across the lifespan.
Future research could examine demographic factors related to self-identification, validate autism identity measures, and develop supports for self-diagnosed autistics.
Strengths
The scoping review had several methodological strengths:
- Following established guidelines for scoping reviews
- Defining a focused research question and clear inclusion/exclusion criteria
- Searching multiple relevant databases with comprehensive keywords
- Having multiple authors systematically review decisions
- Extracting key data into a well-organized table
- Using thematic analysis to provide a meaningful synthesis across varied studies
Limitations
However, some limitations should be noted:
- Grey literature was excluded, potentially missing relevant perspectives
- Most studies relied on online survey data, lacking more in-depth qualitative methods
- Participants skewed towards females, limiting gender representation
- Studies were limited to the USA and UK, lacking global representation
- The review was limited to English-language publications
These limitations suggest the need for more globally representative research using diverse data collection methods and a wider range of participant demographics and backgrounds.
Integrating community perspectives, such as from autistic self-advocates, could also enhance future reviews.
Implications
This scoping review has significant implications for both research and practice related to autism in adulthood. It demonstrates that self-identification of autism is a meaningful phenomenon worthy of research attention, not just a sub-optimal alternative to professional diagnosis.
Self-identification appears to play an important role in identity development and psychological wellbeing for many autistic adults.
For clinical practice, the findings suggest a need for autism-affirmative approaches that value clients’ self-assessments and support positive identity development.
Clinicians should strive to reduce barriers to formal diagnosis by increasing their own understanding of adult autism presentations, taking client self-identification seriously, and offering affordable and accessible assessment options.
The intersection of autistic and LGBTQ+ identities also has implications for making sexual healthcare and sex education more neurodiverse-affirming. Clinicians working with self-identified autistic adults should be prepared to discuss gender and sexual identity development.
Methodologically, the scoping review provides a road map for conducting future research syntheses on this topic. It also identifies areas for further empirical study, such as the demographics of self-identified autistic adults, the development of autism identity measures, and supports for self-diagnosed autistics.
As increasing numbers of adults self-identify as autistic, it is essential that research keeps pace to guide evidence-based clinical and social support practices.
This scoping review marks an important step in that direction, affirming the validity of self-identification and mapping the current state of knowledge.
Further research in this area has the potential to greatly improve quality of life for the many autistic adults who first recognize their autism through self-identification.
References
Primary reference
Overton, G. L., Marsa-Sambola, F., Martin, R., & Cavenagh, P. (2023). Understanding the self-identification of autism in adults: A scoping review. Review Journal of Autism and Developmental Disorders, 1-21. https://doi.org/10.1007/s40489-023-00361-x
Other references
Arksey, H., & O’malley, L. (2005). Scoping studies: towards a methodological framework. International journal of social research methodology, 8(1), 19-32. https://doi.org/10.1080/1364557032000119616
Jones, L., Goddard, L., Hill, E. L., Henry, L. A., & Crane, L. (2014). Experiences of receiving a diagnosis of autism spectrum disorder: A survey of adults in the United Kingdom. Journal of autism and developmental disorders, 44, 3033-3044. https://doi.org/10.1007/s10803-014-2161-3
Lai, M. C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013-1027. https://doi.org/10.1016/S2215-0366(15)00277-1
Lewis, L. F. (2016b). Exploring the experience of self-diagnosis of autism spectrum disorder in adults. Archives of Psychiatric Nursing, 30, 575–580. https://doi.org/10.1016/j.apnu.2016.03.009
Lewis, L. F. (2017). A mixed methods study of barriers to formal diagnosis of autism spectrum disorder in adults. Journal of autism and developmental disorders, 47, 2410-2424. https://doi.org/10.1007/s10803-017-3168-3
Moore, D. (2015). The fourth degree of autism: Self-identification. In The Nine Degrees of Autism (pp. 85-108). Routledge.
Peters, M. D., Godfrey, C. M., Khalil, H., McInerney, P., Parker, D., & Soares, C. B. (2015). Guidance for conducting systematic scoping reviews. JBI Evidence Implementation, 13(3), 141-146. https://doi.org/10.1097/XEB.0000000000000050
Keep Learning
Here are some Socratic questions for a college class to further discuss this scoping review:
- How does the phenomenon of self-identification of autism in adulthood challenge or expand conventional notions of autism as a childhood-diagnosed neurodevelopmental disorder? What are the implications for our understanding of neurodiversity?
- The review found that positive autistic identity was more related to self-identification than formal diagnosis. Why might this be the case? How could clinical diagnostic practices better support positive identity development for autistic adults?
- Many self-identified autistic adults reported barriers to formal diagnosis related to clinicians’ lack of understanding and dismissal of their self-assessments. What factors might contribute to this disconnect between self-understanding and clinical recognition of autism? How could it be resolved?
- The intersection of autistic and LGBTQ+ identities was a key finding. How might the experience of recognizing and accepting one marginalized identity relate to or influence the development of other marginalized identities? What are the implications for understanding identity development in neurodivergent individuals?
- Most of the reviewed studies relied on online surveys of predominantly white participants in Western countries. What are the limitations of this methodology and sample for understanding self-identified autism? How could future research achieve more diverse and globally representative samples?
- The review touches on the debate between medical and neurodiversity models of autism. How does the phenomenon of self-identification support or challenge each of these paradigms? Is it possible to integrate them in understanding the lived experiences of autistic adults?
