Systematic Review of the Relationship Between Autism Stigma and Informal Caregiver Mental Health

Papadopoulos, Chris; Lodder, Annemarie; Constantinou, Georgina; Randhawa, Gurch

doi:10.1007/s10803-018-3835-z

Cited by 85 publications

(78 citation statements)

References 48 publications

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“…In ASD research stigma is frequently reported as a barrier to seek help or to receiving a diagnosis (Grinker et al, 2012;Papadopoulos, Lodder, Constantinou, & Randhawa, 2019;Ruparelia et al, 2016;Zuckerman et al, 2014). This may be due to the fear of experienced shame, or the fear of a diagnostic label that has potential negative implications.…”

Section: Stigmamentioning

confidence: 99%

A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe

2020

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Autism research is heavily skewed towards western high-income countries. Culturally appropriate screening and diagnostic instruments for autism are lacking in most low-and middle-income settings where the majority of the global autism population lives. To date, a clear overview of the possible cultural and contextual factors that may affect the process of identifying and diagnosing individuals with ASD is missing. This study aims to outline these factors by proposing a conceptual framework. A multidisciplinary review approach was applied to inform the development of the conceptual framework, combining a systematic review of the relevant autism research literature with a wider literature search spanning key texts in global mental health, cultural psychiatry, cross-cultural psychology and intellectual disability research. The resulting conceptual framework considers the identification, helpseeking and diagnostic process at four interrelated levels: i) the expression, ii) recognition, iii) interpretation and iv) reporting of autism symptoms, and describes the cultural and contextual factors associated with each of these levels, including cultural norms of typical and atypical behaviour, culture-specific approaches to parenting, mental health literacy, cultural beliefs, attitudes and stigma, as well as the affordability, availability, accessibility and acceptability of services. This framework, mapping out the cultural and contextual factors that can affect the identification, help-seeking and diagnosis of ASD, may function as a springboard for the development of culturally appropriate autism screening and diagnostic instruments, and inform future cross-cultural autism research directions. The framework also has relevance for clinicians and policy makers aiming to improve support for underserved autism populations worldwide. Lay summaryThe vast majority of autism research is conducted in western high-income settings. We therefore know relatively little of how culture and context can affect the identification, helpseeking and diagnosis of autism across the globe. This paper synthesises what is known from the autism research literature and a broader literature and maps out how culture and context may affect i) the expression, ii) recognition, iii) interpretation and iv) reporting of autism symptoms.

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Section: Stigmamentioning

confidence: 99%

A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe

2020

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“…Stigma experiences have been also reported in non-CLD groups, and it appears that stigma is a theme across different groups in the autism field. Papadopoulos et al (2019) carried out a systematic literature review exploring the relationship between autism-related stigma and the mental health of caregivers across diverse sociocultural settings, including countries in East Asia, the Middle East, USA, and Australia. The review showed that stigma has a harmful impact on the caregivers' mental health including depression, anxiety, and psychological distress.…”

Section: Stages Of Acceptance and Stigmamentioning

confidence: 99%

“…A recently published study (Kinnear et al 2016) with a sample of 502 families from USA and Canada showed that parents report that they experience stigma and that this adds to the difficulty of raising a child with autism. In addition, experiences of stigma related to having a child with autism can lead to social isolation and exclusion (Kinnear et al 2016) and to mental health difficulties (Papadopoulos et al 2019).…”

Section: Introductionmentioning

confidence: 99%

Perceptions, Experiences, and Needs of Parents of Culturally and Linguistically Diverse Children with Autism: a Scoping Review

Papoudi

Jørgensen

Guldberg

et al. 2020

Rev J Autism Dev Disord

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A scoping review of studies carried out in the UK and the USA was conducted to explore the perceptions, experiences, and needs of culturally and linguistically diverse families of children with autism. Overall, 32 articles met the inclusion criteria, 25 studies were conducted in the USA and 7 studies in the UK. Four themes emerged including (a) knowledge and beliefs about autism and their impact on the family; (b) autism and family life; (c) family experiences of accessing services and support, and parents' needs; and (d) multilanguage. Findings highlighted that family perceptions of autism are influenced by an often-reported lack of knowledge; experiences include social stigma as well as difficulties in having access to services. Needs indicate the development of culturally sensitive interventions, information in multiple languages, and parent-professional collaboration. Implications for research, policy, and practice are included.

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“…6 The consequences of such stigmatization include emotional trauma, mental and educational difficulties, and diminished self-perceptions. Caretakers and family members are also affected (e.g., feelings of isolation, social exclusion, guilt, extreme levels of distress, and lower subjective wellbeing), [7][8][9] increasing the risk of delayed intervention and developmental progress 10 or leading to avoidance of treatment altogether (i.e., label avoidance). 11 These outcomes are detrimental to those with the disorder and result in greater health care costs globally.…”

Section: Introductionmentioning

confidence: 99%

An Auti-Sim Intervention: The Role of Perspective Taking in Combating Public Stigma with Virtual Simulations

Sarge

Kim

Velez

2020

Cyberpsychology, Behavior, and Social Networking

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Public stigma associated with autism spectrum disorder (ASD) commonly stems from judgments surrounding sensory overload symptoms. As individuals try and make sense of observed disordered behaviors of those with ASD, they are quick to develop dispositional attributions instead of acknowledging situational instigators. Interventions aimed at educating the lay public that disordered actions are a result of a biological causes have been successful in lessening perceptions of responsibility, yet foster an out-group perspective allowing prejudice attitudes and discriminatory behaviors to persist. The present study examines the short-term effectiveness of engagement with a virtual simulation, Auti-Sim, to combat stigma by giving lay people a first-person experience of sensory overload. To assess Auti-Sim, a between-subject, in-laboratory experimental design was employed. A total of 123 undergraduate students were randomly assigned to 1 of 3 interventions (virtual simulation engagement, observation of simulation engagement, or reading text vignettes). Participants completed a brief pretest questionnaire, encountered the intervention, and then completed a post-test questionnaire. Engagement with the virtual simulation resulted in heightened perspective taking, which subsequently increased emotional concern, helping intentions, and willingness to volunteer compared with the observation only or text vignette intervention. Positive attitudes toward those with ASD did not differ across interventions. Fostering a different understanding of disordered action through a virtual simulation has the potential to elicit perspective taking and subsequent empathetic outcomes. Perspective taking seems to encourage perceptions of in-group belonging rather than out-group categorization and thus might be a desired outcome for stigma-reducing efforts.

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Systematic Review of the Relationship Between Autism Stigma and Informal Caregiver Mental Health

Cited by 85 publications

References 48 publications

A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe

A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe

Perceptions, Experiences, and Needs of Parents of Culturally and Linguistically Diverse Children with Autism: a Scoping Review

An Auti-Sim Intervention: The Role of Perspective Taking in Combating Public Stigma with Virtual Simulations

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