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
Summary of Research
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
Summary of Results
: Dear Ethics Panel, I am writing to advise you that the following research project has now been completed:
Understanding the stories of young people of the global majority and their families after receiving a diagnosis of autism: exploring the interplay of culture, neurodiversity, and other aspects of identity.Introduction
Several studies indicate that PoGM do not have or are reluctant to access health and mental health services due to institutional racism and clinicians’ unconscious bias. Experiences of contact with services can be further impacted by the diagnosis of autism. Research proposes that culture influences families on many levels when looking after a child with a developmental disability; detecting and making sense of differences, communications with healthcare organisations, selecting treatment approaches, and future hopes. There is limited research which involves hearing from autistic young PoGM. This study sought to understand the stories of young PoGM and their families, explore their personal narratives, and understand how these are shaped by the diagnosis process of autism, as well as cultural, community, and dominant narratives.Aims
1. What are the personal stories of young people of the global majority who have received an autism diagnosis?
2. What are the personal stories of their family members of their child, including autism assessment and diagnosis?
3. Are there shared narratives about autism between the young people and their families?
4. Do community and cultural narratives of autism feature in the personal stories?Method
Narrative analysis was used to interpret interviews. Nine interviews were conducted, four with young people, and five with parents. A summary of the participants' narratives was shared with them, and they had the opportunity to edit them.Results
Findings highlighted the unique stories people of the global majority tell after receiving an autism diagnosis. Personal narratives were influenced by family, community, and cultural narratives.Six areas emerged from the young peoples’ narratives in relation to their personal stories; these were meaning-making of autism, important people, awareness of self over time, post-diagnosis support, school support, and autism in the family.
Eight areas emerged in the parents’ narratives; these were identifying autism, battle and barriers to services, emotional dysregulation, professional roles, hopes and dreams for their young person, post-diagnosis support, school support, and autism in the family.
Cultural and community narratives that emerged were: cultural narratives of autism, intersectionality (gender, discrimination, bullying), stigma, and faith narratives.
Clinical implications are discussed for creating culturally sensitive services, increasing community presence and challenging dominant medical narratives of autism. Of particular note were increased barriers to services, cultural and faith narratives, increased bullying and stigma.
I appreciate your support with the study.
REC name
HSC REC B
REC reference
23/NI/0095
Date of REC Opinion
31 Jul 2023
REC opinion
Further Information Favourable Opinion