“I'm a normal autistic person, not an abnormal neurotypical”: Autism Spectrum Disorder diagnosis as biographical illumination
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Building on Michael Bury's "biographical disruption" and Kathy Charmaz's "loss of self," which describe the deteriorative impacts of chronic illness on perceptions of selfhood, I propose "biographical illumination"-a transformed conceptualization of self and identity that is facilitated by but extends beyond medical meaning, enriching personal biography and social relationships. The concept is perhaps most applicable to experiences with neurological and neurodevelopmental conditions in which brain difference and personhood are perceived to be closely intertwined. In this study, biographical illumination is used to describe the experiences of autistic adults who learned of their Autism Spectrum Disorder (ASD) diagnosis during teen years or adulthood. Through an ASD lens, participants found explanation for their atypicality and developed a more valued self-concept. Learning of the condition did not disrupt their biography; rather, it became integral to and constitutive of it. With a new self-concept, participants re-gauged personal expectations for normalization and accessed communities of alike others, forging relationships that affirmed identity.
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Adults described interactions with other autistic adults as validating and fulfilling, where their differences were normalised.
“In contrast, adults described interactions with other autistic adults as validating and fulfilling (Bargiela et al., 2016; Hickey et al., 2018; Tan, 2018), where their differences were normalised (Bargiela et al., 2016; Hickey et al., 2018; Tan, 2018).”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Tan, 2018
Some autistic adults asserted that autism is a positive intrinsic difference, but others viewed autism more negatively and separated it from their identities.
“Some autistic adults asserted that autism is a positive intrinsic difference (e.g. Lewis, 2016b; Tan, 2018), but others viewed autism more negatively and separated it from their identities (Griffith et al., 2012; Hickey et al., 2018).”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Tan, 2018
Many adults participated in autistic peer communities following autism diagnosis.
“Many adults participated in autistic peer communities following autism diagnosis (Hickey et al., 2018; Lewis, 2016b; Tan, 2018).”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Tan, 2018
Diagnosis offered a framework to re-interpret own characteristics using alternative standards of 'normality' and helped adults improve self-acceptance and participate in the autistic community.
“Diagnosis offered a framework to re- interpret own characteristics using alternative standards of”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Tan (2018)
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References 64 · Cited by 122
- Authors
- Tan, C. D.
- Affiliations
- Brandeis University (US)
- Corresponding author
- Tan, Catherine D.
- ORCID
- Tan, Catherine D.
- Venue
- Social Science & Medicine
- Publisher
- Elsevier BV
- Published
- 2018-01
- Volume
- 197
- Pages
- 161-167
- ISSN
- 0277-9536 (ISSN-L)
- OpenAlex
- W2774655211
- Cited by
- 122
- References
- 64
- Citations by year
- 2026: 18 · 2025: 15 · 2024: 14 · 2023: 12 · 2022: 12 · 2021: 6 · 2020: 40 · 2019: 4 · 2018: 1
- FWCI
- 7.07
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- www.elsevier.com/tdm/userlicense/1.0/ (tdm)
- www.elsevier.com/legal/tdmrep-license (tdm)
- www.elsevier.com/open-access/userlicense/1.0/ (am, 355 d)
- doi.org/10.15223/policy-017 (stm-asf)
- doi.org/10.15223/policy-037 (stm-asf)
- doi.org/10.15223/policy-012 (stm-asf)
- doi.org/10.15223/policy-029 (stm-asf)
- doi.org/10.15223/policy-004 (stm-asf)
- Locations
- Social Science & Medicine (acceptedVersion)
- PubMed (publishedVersion)
- RePEc: Research Papers in Economics (submittedVersion)
- Funders
- National Science Foundation (#1636976)
- The Lurie Institute for Disability Policy
- Mellon Foundation
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Psychology › Developmental and Educational Psychology › Identity, Memory, and Therapy
- Social Sciences › Education › Qualitative research in health
- Keywords
- autism spectrum disorder, diagnosis, biographical disruption, loss of self, self-concept, identity, neurodiversity, normalization, autistic adults, personhood, interpersonal relationships
- MeSH terms
- Autism Spectrum Disorder, Adolescent, Adult, Attitude to Health, Female, Humans, Male, Self Concept, Young Adult
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