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      Autism in black, Asian and minority ethnic communities: a report on the first Autism Voice UK Symposium

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          Abstract

          Purpose

          Little is known about the way autism is interpreted and accepted among the black, Asian and minority ethnic (BAME) populations in the UK. This report summarises a Symposium on autism in the UK-BAME community in 2018, organised by Autism Voice UK, Participatory Autism Research Collective and the Critical Autism and Disabilities Studies Research Group at London South Bank University.

          Design/methodology/approach

          The stance a family or community takes about a condition such as autism is influenced by their cultural background. The aims of the Symposium were to highlight different perspectives about autism in BAME communities and to preserve the cultural dignity of the community in supporting autistic members. Beliefs about autism, its diagnosis and acceptance of and support for autistic people from a specific cultural perspective of BAME communities must be cautiously interpreted by autism professionals because beliefs vary among different cultural groups.

          Findings

          Thematic analysis of feedback from participants yielded the following foci. Firstly, cultural, ethnic and religious sensitivities were important to participants who felt that these were often ignored by non-BAME professionals. Secondly, the need for collaboration to improve autism awareness within the community and understanding by professionals of the intersectionality between autism and identity in BAME families was prioritised. Thirdly, issues around feelings of stigma were common, but delegates felt that these were not well understood beyond people identifying as BAME.

          Originality/value

          An action plan was created which highlighted raising public awareness through community engagement, improvement of access to information for parents and culturally aware autism education for professionals and BAME communities.

          Related collections

          Most cited references 23

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          Coping strategies used by parents of children with autism.

          The purpose of this research was to determine (a) the level of family adaptation, as measured by the Family Crisis Oriented Personal Evaluation Scales (F-COPESs) instrument, among persons with a child diagnosed with autism spectrum disorder (ASD) aged 12 years and under, (b) if there was a difference in F-COPES scores based on family demographics, and (c) the time lag between parent's suspicion of ASD and the actual professional diagnosis of ASD. A descriptive survey was used with a convenience sample derived from ASD treatment agencies and a parental support group in the California Bay Area that supports the children and parents of children with special needs. Overall, the level of adaptation was within the normal limits with coping scores similar to the norm scores of the F-COPES with males scoring slightly higher than females in the coping scale. Subscale scores of the F-COPES indicated that the parents sought encouragement and support from friends, informal support from other families who faced similar problems, and formal support from agencies and programs. Reframing revealed similar results as the norm with less use of spiritual support, and more passive appraisals were noted from the parents of children with ASD. Within internal comparisons, there were no statistical differences among gender and amount of time a member spent in coordination of services. Comparisons in ethnicity for Caucasians and Asian Americans revealed a higher coping score for reframing in Asian Americans and a higher passive appraisal score among Caucasians. Non-English speakers scored higher on spiritual support, while English speakers scored higher in passive appraisals. Because of insufficient statistical power, comparisons in education, income, marital status, and relocation of residence were deferred. The time from parents' suspicions of developmental delays or disability to a professional diagnosis of ASD was at least 6 months or greater. It is imperative for nurse practitioners (NPs) to provide appropriate professional support and other social support systems to families with children with ASD. Educating parents to sound therapy approaches to provide them with the skills needed to directly address stressful events in order to increase the parent's confidence level as to avoid passive appraisals is also a crucial role of the NP. NPs may want to use the F-COPES as part of the assessment to ascertain the areas of needs of families. This study reveals the resiliency and highly adaptive nature of these parents who are under severe strain and stress of caring for a child with ASD. The effective ways they coped as a family were in the areas of informal and formal social support networks. Participants also used passive appraisal to cope. The study also supports the need for early recognition and diagnoses of ASD and referral for early intervention for better outcomes for the children and families affected by ASD.
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            Psychological distress and well-being of Latina and non-Latina White mothers of youth and adults with an autism spectrum disorder: cultural attitudes towards coresidence status.

             S Magaña,  J. Smith (2006)
            This article examined the emotional well-being of 108 Latina and non-Latina White mothers who were coresiding with a youth or adult with an autism spectrum disorder (ASD). It was hypothesized that Latina mothers would be more satisfied with coresidence than non-Latina White mothers, and that satisfaction with coresidence would mediate the relationship between ethnicity and outcomes. When controlling for demographic characteristics, non-Latina White mothers were more distressed and had lower levels of psychological well-being than Latina mothers. As hypothesized, satisfaction with coresidence mediated this difference. Qualitative analysis revealed that both groups of mothers valued family cohesion as a positive aspect of coresidence. However, Latina mothers were less likely to report negative aspects of coresidence than non-Latina White mothers. 2006 APA, all rights reserved
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              White-Black Disparities in Family-Centered Care Among Children with Autism in the United States: Evidence From the NS-CSHCN 2005–2006

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                Author and article information

                Contributors
                Journal
                AIA
                10.1108/AIA
                Advances in Autism
                AIA
                Emerald Publishing
                2056-3868
                2056-3868
                29 February 2020
                : 6
                : 2
                : 165-175
                Affiliations
                Autism Voice, London, United Kingdom of Great Britain and Northern Ireland
                Department of Education, London South Bank University , London, UK
                Author notes
                Nicola Martin can be contacted at: martinn4@lsbu.ac.uk
                Article
                641578 AIA-12-2018-0051.pdf AIA-12-2018-0051
                10.1108/AIA-12-2018-0051
                © Emerald Publishing Limited
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 18, Pages: 1, Words: 5841
                Product
                Categories
                e-conceptual-paper, Conceptual paper
                cat-HSC, Health & social care
                cat-LID, Learning & intellectual disabilities
                Custom metadata
                M
                Web-ready article package
                Yes
                Yes
                JOURNAL
                included

                Health & Social care

                Intersectionality, Autism, Education, Culture and ethnicity, Services

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