Listening to Bedouin Mothers of Children with Autism

Manor-Binyamini, Iris; Shoshana, Avihu

doi:10.1007/s11013-018-9567-x

Cited by 29 publications

(15 citation statements)

References 19 publications

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“…In addition, cultural and linguistic barriers may also contribute to the difficulties of Bedouin families in scheduling hospital diagnosis meetings. These unique difficulties of the Bedouin population of the Negev have already been reported as factors that may contribute to impairment of the quality of care for this population, to damage to the therapeutic continuum, and potentially also to complicating the detection and diagnosis of ASD in the children of this population [Manor‐Binyamini & Shoshana, 2018].…”

Section: Discussionmentioning

confidence: 99%

Ethnic Disparities in the Diagnosis of Autism in Southern Israel

et al. 2020

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The prevalence of autism spectrum disorder (ASD) is continuously rising worldwide, with remarkable differences in ASD rates being reported across ethnic and socioeconomic groups. We conducted a prospective cohort study to identify the reasons for differences in ASD rates between the Bedouin and Jewish populations in southern Israel. Screening, referral, and diagnosis of toddlers aged 16–36 months were compared between Bedouin and Jewish populations. ASD screening was conducted at 35 randomly selected mother and child health centers (MCHCs) by trained nurses using the Modified Checklist for Autism in Toddlers with follow‐up (M‐CHAT/F) instrument. Toddlers screened positive at the MCHCs were monitored throughout the referral and diagnosis process at a single medical center until a diagnosis was determined by a physician specialist using DSM‐5 criteria. The study cohort comprised 3,343 toddlers (996 Jewish and 2,347 Bedouin). Bedouin toddlers, compared to Jewish toddlers, were less likely to screen positive with M‐CHAT/F (3.0% vs. 3.9%; P = 0.165), were significantly less likely to begin the hospital diagnosis process (HR = 0.38, 95% CI: 0.14–1.08; P = 0.068), and had a higher rates of loss‐to‐follow‐up during the hospital diagnosis process (42.9% vs. 15.6%, respectively; P = 0.001). The results suggest that ethnic‐specific barriers in the diagnosis process of ASD contribute to under‐diagnosis of ASD in the Bedouin population. Facilitating the diagnosis process for Bedouin families will help to identify more children with ASD at earlier ages and consequently close the ethnic gap in ASD rates. Lay Summary We followed Bedouin and Jewish toddlers aged 16–36 months from southern Israel through their autism spectrum disorder (ASD) screening referral and diagnosis to identify the reasons for the differences in ASD prevalence between these ethnic groups. Jewish and Bedouin toddlers were equally identified in the ASD screening. However, Bedouin toddlers were less likely to complete the diagnosis process due to higher rates of loss‐to‐follow‐up and slower diagnosis process. Facilitating ASD diagnosis for the Bedouin population will help identifying more toddlers with ASD.

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Section: Discussionmentioning

confidence: 99%

Ethnic Disparities in the Diagnosis of Autism in Southern Israel

et al. 2020

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“…Stigma Stigma towards individuals with autism and their families occurs globally and crosses culture and context (Grinker et al, 2012;Ha, Whittaker, Whittaker, & Rodger, 2014;Hsu et al, 2017;Manor-Binyamini & Shoshana, 2018;Mitter, Ali, & Scior, 2019;Someki, Torii, Brooks, Koeda, & Gillespie-Lynch, 2018;Tilahun et al, 2016). Two types of stigma can be distinguished; felt stigma (internal stigma rooted in fear of enacted stigma) and enacted stigma (external stigma, including overt ostracism or discrimination) (Brohan, Slade, Clement, & Thornicroft, 2010).…”

Section: Associated Factors Of Influencementioning

confidence: 99%

“…Gender inequality can form a barrier to accessing services in some cultural contexts. A study among Bedouin mothers of children with autism in Israel (Manor-Binyamini & Shoshana, 2018) describes how in the strongly patriarchal society of the Bedouins, mothers are often unable to access services for their children by themselves and require the father as mediator. One mother was quoted:…”

Section: Cultural Barriers In Accessibilitymentioning

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: Associated Factors Of Influencementioning

confidence: 99%

A conceptual framework for understanding the cultural and contextual factors on autism across the globe

Leeuw¹,

Happé²,

Hoekstra³

2019

Preprint

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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, help-seeking 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.

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Listening to Bedouin Mothers of Children with Autism

Cited by 29 publications

References 19 publications

Ethnic Disparities in the Diagnosis of Autism in Southern Israel

Ethnic Disparities in the Diagnosis of Autism in Southern Israel

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

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