Examining contextual, experiential and psychological factors that influence (determine and threaten) the wellbeing of Black and minority ethnic groups
Lead Research Organisation:
University of Warwick
Department Name: Centre for Education Studies
Abstract
The growth of research on the Autism Spectrum Disorder, (hereafter ASD) over the last few decades (e.g. APA, 2013; Zainal & Magiati, 2016) suggests that researchers, families, communities, and societies still consider autism a complex disorder despite the myriad of information available. The intricate nature of autism requires an interdisciplinary approach (neuroscience, psychology, speech and language, visual arts, human-computer interaction, artificial intelligence and education) to understand the confounding nature of the condition, contribute to the dialogue and debate on the best to support children with autism (Porayska-Pomsta et al., 2012). The research questions will examine how culture shapes understandings and approaches to autism by observing how West-African immigrant parents respond to ASD within the diverse UK culture. This study is vital to understand how culture influences individuals' psychosocial understanding of autism; yet conspicuously under-researched in academia. Subsequently, a cultural study of autism is essential to contribute to the existing dialogue, an interdisciplinary approach and to gain a holistic understanding of ASD. [...]
Traditional research on disability has usually represented 'the disabled' in ways which can be viewed as disempowering (Rodan & Ellis, 2016; Morris, 1992; Slee, 1996), therefore it is important that new research recognise the power dynamics that exist between ASD and neurotypical individuals. Barnes (1992) call for research into disability to become 'emancipatory' whereby "research is about the systematic demystification of the structures and processes which create disability, and the establishment of a workable 'dialogue' between the research community and disabled people to facilitate the latter's empowerment" (122). Such awareness is paramount in constructing a study which seeks to understand the disabled (and those who advocate on behalf of them) in ways which they view as emancipatory rather than discriminatory, thus, supporting the purpose of this research to empower the West-African caregivers in a Western society. [...]
This research will raise awareness of how Black participants perceive ASD, particularly West-African parents' experiences of their ASD child. This study will develop substantive research and theory in an area where limited research exists, lead to a comparative understanding and explanation of attitudes of the autism condition in the Black community and begin to reduce stigma attached to disability/autism, specifically, in West-African community. Furthermore, the study findings will inform professional practice: encourage professionals, whether teachers or health practitioners to educate themselves on ASD and the cultural influence on West-African parents (Papadopoulos, 2016) to encourage close working relationship between parents and professionals.
Traditional research on disability has usually represented 'the disabled' in ways which can be viewed as disempowering (Rodan & Ellis, 2016; Morris, 1992; Slee, 1996), therefore it is important that new research recognise the power dynamics that exist between ASD and neurotypical individuals. Barnes (1992) call for research into disability to become 'emancipatory' whereby "research is about the systematic demystification of the structures and processes which create disability, and the establishment of a workable 'dialogue' between the research community and disabled people to facilitate the latter's empowerment" (122). Such awareness is paramount in constructing a study which seeks to understand the disabled (and those who advocate on behalf of them) in ways which they view as emancipatory rather than discriminatory, thus, supporting the purpose of this research to empower the West-African caregivers in a Western society. [...]
This research will raise awareness of how Black participants perceive ASD, particularly West-African parents' experiences of their ASD child. This study will develop substantive research and theory in an area where limited research exists, lead to a comparative understanding and explanation of attitudes of the autism condition in the Black community and begin to reduce stigma attached to disability/autism, specifically, in West-African community. Furthermore, the study findings will inform professional practice: encourage professionals, whether teachers or health practitioners to educate themselves on ASD and the cultural influence on West-African parents (Papadopoulos, 2016) to encourage close working relationship between parents and professionals.
Organisations
Studentship Projects
| Project Reference | Relationship | Related To | Start | End | Student Name |
|---|---|---|---|---|---|
| ES/P000711/1 | 01/10/2017 | 30/09/2027 | |||
| 1912098 | Studentship | ES/P000711/1 | 02/10/2017 | 30/09/2021 | Eli Ashong |
| Description | This research has found that because mothers are the primary caregivers of their child with autism, they require practical support and assistance to protect their psychological wellbeing, but respite from the Local Authorities are usually not granted because they do not meet the eligibility criteria. These systemic barriers affect mothers quality of life and psychological wellbeing. Fathers' different role in the household means that they are not as impacted by their child's disability. Parents, particularly mothers, experience double stigma because of their gender and close association with autism in their ethnic communities and racial stigma from the general public. Culture plays a significant role in parents understanding, awareness and experience of autism in their community groups in the UK. Parents in this study held religious beliefs that supported them and offered them a sense of belonging. However, parents felt that their religious organisations were not accommodating of their child's diagnosis due to lack of understanding, awareness, contact, education and knowledge about autism, which limited parents' attendance to religious services and events, and equally elevated feelings of isolation. Parents mentioned negative experiences from support services, professionals and health care workers after their child's autism diagnoses, emphasising on the lack of support available for parents at various structural levels - housing, education, local authorities and even within the health sector. For instance, most of the mothers mentioned having to pay for their child's ECH plan because their Local Authorities did not support their application. Parents were not aware that it was a legal requirement for Local Authorities to fulfil this duty. Because of their child's ASD diagnosis, parents, particularly single mothers, are economically disadvantaged due to their limited career options. Mothers faced marital problems that have led to divorce/separation and impacts their economic status. Despite the various challenges that parents experience at contextual and systemic levels, mothers displayed a high level of resilience. |
| Exploitation Route | The Department of Health should consider: - Increasing training on how to communicate the autism diagnosis sensitively, without a dominant focus on its limitations can help build rapport between parents and clinicians - Fund further research to examine the nature of structural racism present in health services and its impact on parents and children with ASD - Provide guidance for local authorities on how best to commission autism support services that support Black parents' ethnic, cultural and informational needs. Particular examples are the acquisition of EHC plans from the local authorities to avoid payments, a space to discuss culturally sensitive issues that impact parents understanding and experience of autism, in effect their child's development. - Establish a training course for parents after diagnosis that highlights the medical explanations for autism while acknowledging biological, environmental causes to alleviate self-stigma. Such training should also include cultural perspectives of autism/disability for parents to feel understood and included in the White space. For such training to be effective, it is important to 'employ personnel from the Black community - people who can actually relate' to the cultural experience of disability/autism |
| Sectors | Education,Healthcare,Government, Democracy and Justice,Culture, Heritage, Museums and Collections |
| Description | Recent public engagements with charities and autism organisations such as the National Autism Society, A2ndVoice and SEN parenting in London and Think Tank Grapevine Coventry and Warwickshire disseminated findings on factors that influence Black and ethnic minority parents of children with autism. These public engagements provide examples of ways that professionals can provide culturally sensitive services to Black and ethnic minority groups. |
| First Year Of Impact | 2021 |
| Sector | Education,Healthcare,Government, Democracy and Justice,Culture, Heritage, Museums and Collections |
| Impact Types | Cultural,Societal,Economic,Policy & public services |