Autism and Blackness: The role of culture and ecological contexts in black families
Lead Research Organisation:
University of Birmingham
Department Name: Education
Abstract
The fellowship focuses on Black parents' experiences of children with autism spectrum disorder (autism). Black parents' experiences of autism are not well known, and this study recognises the importance of including their voices on what we know so far about how autism shapes parents' experiences. Autism research have explored parents' psychological wellbeing, finances, family life adjustment and navigating the system following an autism diagnosis. My PhD findings revealed similar results but highlighted how familial, community and systemic contexts influence parents experiences.
Research has not always considered the systems (community, institutions) that influence family life, which means considering parents within the context of their family's culture and exploring the impact that raising a child with autism can have on family units and members. Alongside this, it is crucial to identify and acknowledge the existing culture in the various systems and its impact on parents' experiences. My PhD findings revealed the main factors that impact Black parents experiences are cultural beliefs, disablist attitudes and structural racism in health, education and local authority contexts.
During this fellowship, I will build on my PhD work to develop a better understanding of families of children with autism, learn more about their experiences, and contribute evidence which can be used to support them in the future. A key aim will be to extend knowledge in the academic community. To achieve this, I will revise my doctoral research for publication and easily extract data from chapters of the thesis; share findings with parents of children with autism and professionals who support them to improve their lives and practice.
The activities proposed in the fellowship will focus specifically on Black parents' outcomes because we know little about their perspectives and experiences. Typically, when researchers have asked families to take part in research, it is mothers that respond and take part in answering questions about themselves, their child, and their family and so research evidence is often focused on mothers. The wider research community will benefit from research on Black fathers. As it stands, autism research on family experiences lack male and ethnic representation, and this proposed research, the first on Black fathers of children with autism in the UK, will become a tool to build knowledge and commence a process that begins to bridge this research gap. The pilot study will examine and generate knowledge of Black fathers' experiences of autism: the interplay of identities - race, gender and disabilities - will give insight to how fathers understand, experience and respond to their child's health, care and educational needs. This new project will consult with fathers of children with autism to understand how they experience autism from a cultural and racial lens. The aim of this work is to recognise fathers of children with autism, collaborate with them to better understand their needs, and to share information to benefit others.
Research has not always considered the systems (community, institutions) that influence family life, which means considering parents within the context of their family's culture and exploring the impact that raising a child with autism can have on family units and members. Alongside this, it is crucial to identify and acknowledge the existing culture in the various systems and its impact on parents' experiences. My PhD findings revealed the main factors that impact Black parents experiences are cultural beliefs, disablist attitudes and structural racism in health, education and local authority contexts.
During this fellowship, I will build on my PhD work to develop a better understanding of families of children with autism, learn more about their experiences, and contribute evidence which can be used to support them in the future. A key aim will be to extend knowledge in the academic community. To achieve this, I will revise my doctoral research for publication and easily extract data from chapters of the thesis; share findings with parents of children with autism and professionals who support them to improve their lives and practice.
The activities proposed in the fellowship will focus specifically on Black parents' outcomes because we know little about their perspectives and experiences. Typically, when researchers have asked families to take part in research, it is mothers that respond and take part in answering questions about themselves, their child, and their family and so research evidence is often focused on mothers. The wider research community will benefit from research on Black fathers. As it stands, autism research on family experiences lack male and ethnic representation, and this proposed research, the first on Black fathers of children with autism in the UK, will become a tool to build knowledge and commence a process that begins to bridge this research gap. The pilot study will examine and generate knowledge of Black fathers' experiences of autism: the interplay of identities - race, gender and disabilities - will give insight to how fathers understand, experience and respond to their child's health, care and educational needs. This new project will consult with fathers of children with autism to understand how they experience autism from a cultural and racial lens. The aim of this work is to recognise fathers of children with autism, collaborate with them to better understand their needs, and to share information to benefit others.
Organisations
Publications
Ashong, E.
(2023)
Experiences of Black fathers of autistic children in the United Kingdom
| Description | Research on Black fathers of autistic children: 1. Unique Experiences: Black fathers often navigate unique challenges in accessing resources and support services for their autistic children, influenced by socioeconomic factors, cultural perceptions, and systemic barriers. This research created an informal network that offer practical, emotional and informational support so fathers would feel less isolated and develop a sense of community. 2. Resilience and Coping Strategies: Despite facing multiple stressors, many Black fathers exhibited resilience and employed adaptive coping strategies to support their children's needs, including seeking social support from within their communities and utilising informal networks. This research was an opportunity to recognise their presence and impact within the Black family context. 3. Intersectionality: Intersectional identities, such as race, gender, and socioeconomic status, shape the experiences of Black fathers of autistic children, influencing their access to resources, experiences of stigma, and interactions with service providers. This research identified the various factors and how they intersect to influence fathers' identities, their economic status and how these factors influence their roles and self-efficacy as Black fathers. 4. Barriers to Services: Black fathers commonly encounter barriers to accessing healthcare, education, and support services for their autistic children, including discrimination, cultural insensitivity, and limited availability of culturally relevant resources. Whilst this research did not focus heavily on the barriers fathers experiences, it gave some insight to some individual, societal and systemic barriers and how these intersect to negatively affect Black fathers and their autistic children. 5. Need for Culturally Competent Support: There is a critical need for culturally competent interventions and support services tailored to the unique needs and experiences of Black fathers and their autistic children, addressing systemic inequalities and promoting equitable access to resources and opportunities. This research highlighted the need for more autism awareness within the Black community so that appropriate support can be garnered in fathers' natural contexts. The role of education was identified as imperative within the Black culture and the potential benefits to Black parents of disabled children, as stigma towards all disabilities, particularly 'hidden' disabilities remains dominant and influential. These findings underscore the importance of addressing the intersecting challenges faced by Black fathers of autistic children and implementing culturally sensitive and inclusive approaches to support their families effectively. - Engaged with professional stakeholders to improve educational practices for Black autistic children in schools I Identified relevant stakeholders involved in the education and support of Black autistic children, including a teacher, SENCo, special education professionals such as psyhologists, parents, advocacy groups, and community leaders.I organised a meeting forums to facilitate open dialogue and collaboration among stakeholders. Provide a safe space for sharing experiences, concerns, and ideas for improving educational practices. I shared my PhD research findings, best practices, and resources on supporting Black autistic children in educational settings. These included information on culturally responsive teaching, inclusive classroom strategies, and evidence-based interventions for autism. All stakeholders emphasised the importance of cultural sensitivity and awareness in supporting Black autistic children. A parent discussed her experiences and the support she would benefit from the educational professionals that may influence her child's educational outcomes. There was a unanimous advocacy for policies and practices that promote equity and inclusion for Black autistic children in schools. These involved addressing disparities in access to resources, reducing disciplinary disparities, and promoting culturally affirming environments. I produced a leaflet 'Developing Communication and Clarity between Stakeholders' to establish mechanisms for monitoring progress, evaluating outcomes, and making adjustments as needed to regularly assess the effectiveness of interventions and practices in supporting the academic and social-emotional needs of Black autistic children. By engaging with professional stakeholders and implementing collaborative strategies, schools can work towards creating more inclusive and supportive environments for Black autistic children, ultimately improving educational outcomes and promoting their overall well-being. Other achievements during the reward: - Publication of research on Black fathers - I have submitted a manuscript for publication at Disability and Society Journal. |
| Exploitation Route | The publication of research findings on Black fathers of autistic children can have several significant impacts: 1. Awareness and Understanding: Publishing the research results increases awareness and understanding of the unique experiences, challenges, and needs of Black fathers raising autistic children. This can contribute to reducing stigma and misconceptions surrounding autism within the Black community. 2. Policy Implications: The research findings may inform policymakers and stakeholders about the specific barriers faced by Black fathers and their children in accessing support services. This can lead to the development and implementation of targeted policies and initiatives aimed at addressing systemic inequalities and improving access to resources. 3. Clinical Practice: Healthcare providers, educators, and service providers can benefit from the insights provided by the research to enhance their cultural competence and improve the delivery of services to Black families affected by autism. This can include developing culturally sensitive intervention programs and providing training on diversity and inclusion. 4. Community Empowerment: Publishing the research results can empower Black fathers and their families by validating their experiences and promoting a sense of belonging within the autism community. It can also facilitate the creation of online and offline support networks tailored to the needs of Black families raising autistic children. 5. Further Research: The publication of research findings often stimulates further inquiry and investigation into related topics. It may inspire additional studies exploring different aspects of the experiences of Black fathers of autistic children, leading to a deeper understanding of their needs and the development of more effective interventions. The publication of research results on Black fathers of autistic children has the potential to generate positive societal impacts by fostering inclusivity, equity, and support for diverse families affected by autism. - Submitting a publication on Black Christian mothers and their experiences of their children's autism in faith and community contexts to a journal can have several significant effects: 1. Research Contribution: The publication contributes valuable insights into the intersection of race, religion, and autism within the Black community. It adds to the existing literature by highlighting the unique experiences, challenges, and coping strategies of Black Christian mothers raising autistic children within faith and community settings. 2. Community Empowerment: Sharing the experiences of Black Christian mothers can empower other mothers facing similar challenges by providing validation, solidarity, and a sense of belonging within their faith communities. It can also foster open dialogue about autism and faith, reducing stigma and promoting acceptance. 3. Faith-Based Support: The publication may prompt faith leaders and communities to become more aware of the needs of families affected by autism and to develop inclusive and supportive initiatives. This could include creating autism-friendly spaces, offering resources and support groups, and providing education and training on autism awareness and acceptance. 4. Clinical and Educational Practice: Healthcare providers, educators, and service providers can benefit from the insights provided by the publication to better understand the cultural and religious contexts influencing the experiences of Black Christian mothers and their children with autism. This can lead to more culturally sensitive and effective interventions and support services. 5. Policy and Advocacy: The publication may inform policy discussions and advocacy efforts aimed at addressing the unique needs of Black families of autistic individuals within faith and community contexts. It can highlight areas where additional resources, services, and policies are needed to promote equity and access to support. Submitting a publication on Black Christian mothers and their experiences of their children's autism in faith and community contexts has the potential to generate positive impacts by fostering understanding, support, and advocacy for diverse families affected by autism within religious communities. |
| Sectors | Communities and Social Services/Policy Education Healthcare Other |
| URL | https://www.birmingham.ac.uk/research/acer/research |
| Description | Created an online support group for Black fathers. They organise the meetings and I share resources to them ad hoc. This recognises fathers' individual and collective challenges as fathers of autistic children. This group builds fathers sense of community, understanding and empathy. It offers a platform for sharing experiences, advice and coping strategies, which fosters emotional support and empowerment. Additionally. fathers provide access to information and resources that may not be readily available offline. This group plays a crucial role in promoting positive mental health and wellbeing. |
| First Year Of Impact | 2024 |
| Sector | Communities and Social Services/Policy,Education |
| Impact Types | Cultural Societal Policy & public services |
| Description | All Age Autism Grant Reviewer |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | In the realm of community engagement services and policy, the involvement of an advisory group catalyzed substantial changes. For instance, a particular focus was on advocacy for policy adjustments that prioritize patient-centered care, influencing decision-makers to incorporate more inclusive and accessible educational and healthcare practices for grant applications to be awarded. My involvement often led to the consideration and some implementation of policies that better address the diverse needs of autistic people and their family support, potentially improving overall healthcare outcomes. Through active participation in an advisory group, I found there was an opportunity to advocate for increased transparency in healthcare communication. This sometimes resulted in families awareness of local and statutory policies that empower families, particularly mothers as primary caregivers with clearer information about existing support services, educational support and other options, ensuring they can make informed decisions about their autistic child's health. Moreover, the advisory group championed initiatives that enhance community engagement, fostering a sense of public involvement in social, educational and healthcare decisions and promoting wellbeing. Overall, the tangible changes stemming from advisory group involvement extend beyond policies, directly influencing families patients and the broader public by promoting more inclusive, transparent, and people-centric health and social care practices. |
| URL | https://allageautism.co.uk |
| Description | Developing communication and clarity between stakeholders |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | The online panel discussion is an impact activity resulting from Eli Ashong's (nee Gemegah) doctoral research on Black parents' experiences of their autistic children in the United Kingdom (UK). Immigrant Black parents have shared similar experiences of the educational and local authority system as other parents of autistic children. The panel discussion occurred on the 6th June 2023 to discuss the specific and unique challenges Black parents and Black autistic children experience in educational settings. The leaflet was a result of a panel discussion between a parent and educational professionals. It is designed to support parents and carers to navigate the educational setting, pre, during and post an autism diagnosis. Parents and carers can use this booklet as a guide to develop their understanding of the educational setting, and a tool to build their language for specific support strategies to engage with educational staff and foster positive relationships. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://youtu.be/_LIXYMJjarM |
| Description | Panel discussion - Disability history month (ACER) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | A panel discussion of Black parent experiences of autism in schools. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.birmingham.ac.uk/events/disability-history-month/2021/marginalised-families-and-autism-u... |
| Description | Webinars/conferences |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Three online public engagements sharing my PhD findings with large audiences. Findings sparked more interest, dialogue and questions about familial, contextual and systemic factors that shape Black parents experiences of autism. |
| Year(s) Of Engagement Activity | 2021,2022 |
| URL | https://warwick.ac.uk/fac/cross_fac/ias/calendar/families/ |