Understanding stories of autism, identity, and culture
Research type
Research Study
Full title
Understanding the stories of young people of the global majority and their families after receiving a diagnosis of Autism Spectrum Condition (ASC) from a second opinion autism service: exploring the interplay of culture, neurodiversity, and other aspects of identity.
IRAS ID
319041
Contact name
Bethany Copping
Contact email
Sponsor organisation
Salomons Centre for Applied Psychology
Clinicaltrials.gov Identifier
n/a, n/a
Duration of Study in the UK
1 years, 2 months, 1 days
Research summary
The medical model seeks symptom reduction, ‘normalisation’ and elimination of conditions identified based on ‘deficits’ that impact functional life activities (American Psychiatric Association, 2013; Baker, 2011). The neurodiversity movement challenges the medical model’s interest in cure and causes, celebrating autism as an inseparable part of identity. Kapp et al. (2013) found that self-identification as ‘autistic’ and awareness of neurodiversity were associated with viewing autism as a positive identity that needs no cure. Research has also indicated that identifying positively with an autistic identity mediates the relationship between self-esteem and mental health difficulties, suggesting that personal acceptance of autism as part of identity could protect against depression and anxiety (Cooper et al. 2017).
Studies indicate that People of the Global Majority (PoGM)* do not have or are reluctant to access health/mental health services due to the potential for institutional racism and clinicians’ unconscious bias. Early research shows there may be biases in how autism services interact with different communities.
Intersectionality proposes that an individual who has several oppressed identities will have different experiences than someone who shares only one of the oppressed identities (Crenshaw, 1989). Intersectionality considers that identity can be mediated by cultural constructs implicated in power, privilege and oppression (Liasidou, 2013). Butler (2015) posits that the complexities of lived experiences are represented when we look at intersectionality. It is therefore, important to consider the implication of intersectionality that occurs when an individual has autism and is a PoGM.
The aim is to interview 6 young PoGM and their families who have accessed the second opinion autism assessment at Great Ormond Street Hospital to gather their stories of diagnosis, identity, and factors that have influenced this.
*People of the Global Majority includes people who are Black, Asian, Brown, dual-heritage, indigenous to the global south, and/or have been racialised as 'ethnic minorities
REC name
HSC REC B
REC reference
23/NI/0095
Date of REC Opinion
31 Jul 2023
REC opinion
Further Information Favourable Opinion