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

Mariama Seray Kandeh (Autism Voice, London, United Kingdom of Great Britain and Northern Ireland)
Mariama Korrca Kandeh (Autism Voice, London, United Kingdom of Great Britain and Northern Ireland)
Nicola Martin (Department of Education, London South Bank University, London, UK)
Joanna Krupa (Department of Education, London South Bank University, London, UK)

Advances in Autism

ISSN: 2056-3868

Article publication date: 28 February 2020

Issue publication date: 21 April 2020

1495

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.

Keywords

Citation

Kandeh, M.S., Kandeh, M.K., Martin, N. and Krupa, J. (2018), "Autism in black, Asian and minority ethnic communities: a report on the first Autism Voice UK Symposium", Advances in Autism, Vol. 6 No. 2, pp. 165-175. https://doi.org/10.1108/AIA-12-2018-0051

Publisher

:

Emerald Publishing Limited

Copyright © 2020, Emerald Publishing Limited


Introduction

The authors acknowledge diversity within the black, Asian and minority ethnic (BAME) community. This paper only reflects the thinking of people who responded to the call to share their insights. The term BAME community used here reflects a particular body of literature and insights from a limited number of people. Mindful of the danger of over-generalisation from a small amount of information, the authors are cautious about these findings but feel that they make a useful contribution to the debate.

Although Autism Voice as an organisation has amassed knowledge and understanding through lived experience, there is little research about how autism is experienced in the UK-BAME community (Munroe et al., 2016). Globally, many autistic children and adults live difficult lives. Access to education is often interrupted, employment opportunities are compromised and support and acceptance may well be limited. These factors can prevent full participation in community life. In settings with low levels of autism education and awareness, cultural and religious beliefs, accompanied by stigma, can put individuals and families in intolerable and often dangerous situations (Nwokolo, 2010; Alqahtani et al., 2012). In other words, autistic people and their families can be harmed by the attitudes and behaviours of other people. If autism is conceptualised as a punishment from God, social exclusion is likely to follow. Autism Voice aims to address concerns of this nature through culturally sensitive education about autism delivered by community members who are themselves from BAME communities and by people who have lived personal or family experience of autism. Working under the umbrella of the Centre for Social Justice and Global Responsibility (CSJGR), (which incorporates London South Bank University’s [LSBU] Critical Autism and Disabilities Studies [CADS], ESJ Research Groups and Participatory Autism Research Collective [PARC]). LSBU hosted the Symposium for free, as its aims were congruent with the organisation’s values as a civic university embedded in the community.

The main goal of the Symposium was to raise awareness about autism within the BAME community with a view to promote inclusion. The gathering enabled members of the public to share knowledge, discuss responsibilities and define important actions. An ongoing priority is to work with stakeholders to actualise the recommendations and action plan emanating from the work. The organisers are currently working with a group of autism experts via CADS, ESJ and PARC to ensure the actualisation of the recommendations in the action plan. This includes participating in an LSBU research project funded by The John and Lorna Wing Foundation, which is concerned with the lived experience of older autistic adults who also have intellectual impairments.

Review of current literature on autism in black, Asian and minority ethnic community

Findings from the few studies on autism in the BAME community suggest there is a substantial requirement for large-scale culturally sensitive training, research and awareness-raising programmes for families and professionals (Slade, 2014). The limitations of the research evidence base available indicate a pressing need for further academic study in this field. Autism Voice and LSBU favour research carried out by researchers with insider perspective, preferably of an intersectional nature. PARC includes autistic academics, but few PARC members are from BAME communities. Autism Voice includes participants who are currently taking research degrees at LSBU. The university is committed to supporting their endeavours and to collaborative work that is inclusive of researchers from minority backgrounds.

Cultural perspectives of autism

Culture is defined by Matsumoto (1996) as “the set of attitudes, values, beliefs, and behaviours shared by a group of people, but different for each individual, communicated from one generation to the next” (p. 16). Diagnostic assessment of autism in the UK is increasing, but Slade (2014) suggests that cultural challenges prevent people from the different BAME populations from accepting, seeking or accessing diagnosis. The Slade (2014) study highlights some of the challenges that families in the BAME community face in getting diagnosis for their children.

These include limited knowledge about autism among family members, denial of autism because of religious beliefs that consider acceptance as an endorsement and school authorities possibly having stereotypical views about behaviours of children from BAME backgrounds. Similar perspectives are expressed in Mandell and Novak (2005). The study discusses the role of culture in families’ treatment decisions for autistic children and concludes that culture may affect treatment decisions and that culture is also partly responsible for differences in the use of non-traditional autism “treatment” strategies. In another study by Ennis-Cole et al. (2013), counsellors were encouraged to acknowledge the way culture impacts on perspectives about autism.

Religious perspectives of autism in black, Asian and minority ethnic communities

Religion and religious leaders play an important role in the cultural lives of many people from the BAME community. Although religious beliefs may contribute to reluctance to seek diagnosis, religion could also provide a major source of help for families of autistic people, including emotional support, strength to carry on, accepting the diagnosis and living with the day-to-day challenges autism brings (Pitten, 2008). There are two major religious denominations represented within Autism Voice: Christianity and Islam. While Christianity is mainly popular within the African-Caribbean community, most in the south Asian community are followers of Islam. These belief systems can play a major role in the acceptance of a child’s autism. Faith, arguably, gives autistic parents the strength, hope and feeling of “all shall be well” (Pitten, 2008). However, misconceptions about autism by people of faith could have negative consequences which can impact the well-being of autistic people and their families. An extreme view is that autism is caused by demonic spirits or genies. Alarmingly, exorcism is not unheard of and this has been highlighted as a concern in research on harmful cure-focussed interventions (https://network.autism.org.uk/content/westminster-commission-autism-reports-harmful-interventions). Accepting a diagnosis of autism can be very difficult for families faced with stigmatising views of what this might mean. Some religious leaders warn parents not to accept an autism diagnosis but rather to rely on the power of prayer. Attitudes in some places of worship associated with BAME populations limit the inclusion of autistic persons (Haack, 2017; Ault et al., 2013). PARC members, who are themselves autistic, strongly advocate engaging with adults on the spectrum to change harmful stereotypical thinking around autism.

Pitten (2008) concluded that a range of cultural variables impacted family acceptance of an autism diagnosis. Family and cultural values shape our thoughts and perception of every new happening in our lives. The way families accept or deny autism could well significantly impact not only the autistic child but also parents, siblings and other family members. Inevitably the primary carer, who is usually the mother, is likely to be most directly affected. Slade’s (2014) survey shows that families within the BAME community can experience the pressure of isolation and alienation from their extended family and their community because of other people’s reactions to their child’s autism. Myths about autism within the BAME community are common and unhelpful. Professionals involved in working with families need to be culturally sensitive to these factors. Those who consider themselves knowledgeable about autism may not appreciate the complexity of intersectionality.

Myths, misconception and autism

Wilder et al. (2004) found that some of the myths associated with autism from the BAME community were gendered. The research is now 15 years old, so caution about assuming that the same applies today is urged. One such myth identified by Wilder et al. (2004) was that girls speak earlier than boys. Holding this false belief may mean that parents put off taking their sons for diagnosis even when they experience delayed speech. Some families also relate aspects of their boys’ autistic characteristics to ordinary exuberant volatile male behaviour (Slade, 2014). Culturally, it is accepted within some BAME communities for boys to display “wild” behaviour, while girls are expected to be shy and quiet. Eye contact interpretation by different ethnicities can affect autism diagnosis. In the culture of many BAME communities, it is considered rude for a child to have direct eye contact with an adult. Cultural misunderstanding of eye contact could lead to a misdiagnosis of autism. These observations are built on a rather slight and outdated research base, but there has not been a stampede of new researchers eager to engage with this agenda. Autism Voice hopes to address this gap in collaboration with LSBU and PARC.

Papadopoulos’s (2016) more recent research findings partly attribute stigmatisation to collectivist cultures “which place priority on community interdependence and shared group norms and values” (p. 4). People who are perceived to “deviate from the norm” in some way are more likely to be stigmatised as a result of subjection to “high surveillance levels” (Papadopoulos, 2016, p. 4), in which observers are on the lookout for difference. A major implication is that families who feel watched may decide to hide their autism circumstances from stigmatising community disapproval. Concealment in this way potentially leads to further isolation and loneliness.

People from BAME communities face poorer access to health care (Papadopoulos, 2016), including access to autism services (Slade, 2014). Reasons postulated range from apparent cultural misunderstanding by service providers, lack of rapport, language barriers and discrepancies in conceptualisation of autism between professionals and parents. Families may experience some behaviours from professionals as culturally insensitive and assume that they are on the receiving end of judgemental attitudes. This in turn may lead them to avoid particular services. The ability to self-advocate can be hampered by lack of knowledge of entitlement and availability of services and disjuncture in communication between families and professional. Language barriers will exacerbate already difficult situations and further limit access. Autism Voice is committed to the idea that knowledge is power and to empowering autistic people and their families with the necessary understanding of available services and how to access them.

Employment of autistic people in black, Asian and minority ethnic communities

Intersectional factors between ethnicity and disability can limit employment opportunities for autistic adults. Carers who do not have satisfactory access to support services because of factors discussed earlier are also disadvantaged in the employment arena. The connection between poverty and unemployment hardly needs to be spelled out. Low-income levels can further limit opportunities and exacerbate social exclusion. Combining these factors will have an obvious effect on the well-being of autistic people and their families.

Previous studies (CIPD, 2017; EHRC, 2010; National Audit Office, 2008) have shown that people from BAME communities are less likely to be employed than their white counterparts. While 74 per cent of white people at working age are able to find a job, only around 14 per cent of people from BAME communities are in employment (CIPD, 2017). In spite of the UK Government’s pledge to increase the employment rate of disabled people from 47 per cent to 64 per cent by 2020, the situation remains bleak, while the rate of employment for autistic adults is alarmingly low, as only about 16 per cent are in full-time work (ONS, 2016). Reliable current statistics on the employment rate of autistic people from the BAME community are not available. Cognisant of intersectional concerns, the Equality Act (2010) makes it clear that employers need to make reasonable adjustment to employ disabled people and must not discriminate on the grounds of disability and/or cultural or ethnic background. Disability by association is also covered in the Act and is of relevance to parents and carers of autistic people who require ongoing support which may impact the parent’s/carer’s employment prospects.

Studies in America have shown that migrant communities could use their cultural resources impactfully to acknowledge, accept and support autistic people. Twoy et al. (2007) emphasised that Asian-Americans were more likely to perceive their autistic child in a positive way in spiritual terms. In a study by Magana and Smith (2006), Hispanic contributors report “greater satisfaction” for their autistic children than their neurotypical counterparts. Similarly, Pondé and Rousseau (2013) studied professional perspective versus parental opinion of autistic children in the migrant community. The study found 45 per cent of parents mentioned positive views of their autistic child and 16 per cent mentioned only their children’s qualities. This endorses the notion that migrant communities can use their cultural resources (values and beliefs) to acknowledge, accept and support autistic people. These studies may well hold true for other communities. Autism Voice is of the opinion that with growing awareness by members of the BAME community championed by charities such as Autism Voice, backed by the communal culture of BAME groups, perceptions are changing and acceptance of and support for autistic people are gradually growing. Empirical evidence is necessary to support their hopeful assertion.

Data gathering

Process

Demographic data was collected via anonymous evaluation forms. These included a range of open-ended questions designed to enable participants to express their ideas and share their knowledge and understanding of the topics under discussion and their wider concerns. In addition, the whiteboards were used to capture comments from the day. Four speakers presented on the Symposium’s two themes: theme one covered diverse approaches to autism within the BAME community – cultural, religious and ethnic – and the second theme focussed on paving the way for future approaches. Participants were then divided into groups to discuss the themes from a practical and operational perspective. The groups generated action points, which were recorded on the whiteboard. The evaluation covered what participants found useful, what was missing, ideas for future events, suggestions for improvements and offers for future contributions.

Results

Demographics

In total, 65 participants from across England attended the Symposium, having responded to publicity from CADS, PARC, Autism Voice and the Disability Equality Research Network, and all of them contributed to the discussion, which was captured on the whiteboards. Among them, 29 people responded to the evaluation form – 21 female and 8 male. Seven were African-Caribbean, eight African, seven white British, one Asian (Pakistani), two white European and one mixed European and one black.

Of the 29, 10 identified as disabled, 16 as not disabled and 3 did not state their disability status. Out of the ten disabled people, four described themselves as autistic, one also said they had a mental health condition and five said they had an impairment label (dyslexia, mental health, physical impairment, depression and anxiety and dyspraxia) in addition to autism. Among the 16 non-disabled people were 8 parents with 1 or more autistic children. One parent of an autistic child identified as being autistic themselves.

Attendees classified their work roles as advocacy group leaders, family members, psychologists, teachers, social workers, nurses, early support practitioners, researchers, police officers, university lecturers, students, National Autistic Society staff and a councillor from a London borough. Eight people were not employed outside the home owing to caring responsibilities.

Symposium themes and discussions

The two themes that provided the focus of the Symposium were as follows:

  1. diverse approaches to autism: culture, religion and ethnicity; and

  2. paving the future for autism in BAME.

Culture, religion and ethnicity were discussed at the Symposium. Commentary ranged from the various ways in which autism is approached by different cultures to how culture influences acceptance. Tincani et al. (2009) and Bernier et al. (2010) pointed out that labels such as autism may not exist in certain cultures. In Nicaragua and many South American cultures, autism and similar forms of impairment are not acknowledged and people are viewed as equal and embraced in society alongside non-disabled peers (Kim, 2012; Pitten, 2008). Many Nicaraguans within the Catholic faith are encouraged by their church to believe that a disabled child is a blessing from God. In Korea (Kim, 2012) and Ghana (Anthony, 2009) on the other hand, an impairment diagnosis brings shame and stigma to the family and is viewed as a curse. Findings from these studies suggest that culture plays an important role in how people view autism positively or negatively. The purpose of the first theme was to discuss good practice from different cultures and how to use them to support, accept and embrace autism in BAME.

The discussion on the second theme was centred on the need for autism stakeholders working within the BAME community to collaborate on raising autism awareness, improving autism professionals’ understanding of cultural values of the different populations within the BAME community and creating common understandings and trust. Although evidence shows that the prevalence of autism spectrum condition remains the same regardless of race or ethnicity, the condition is under-identified and/or diagnosed late in children from culturally diverse families (Montes and Halterman, 2011; Tek and Landa, 2012; Tincani et al., 2009). In the UK, the percentage of children identified as having special educational needs and disability in state-funded primary schools without Education, Health and Care Plan (EHCP) increased from 51.4 per cent (2010) to 57.1 per cent (2018), with 4.2 per cent of black Caribbean pupils and 1.8 per cent of Indian pupils having statement or EHCP of special educational needs compared to 2.9 per cent of pupils nationally (DOH, 2018). Reasons included low levels of autism awareness in BAME communities, lack of acceptance by families from BAME and cultural misunderstanding by autism professionals working with BAME families. A critical requirement for success with autism is collaboration among stakeholders (Blair et al., 2010). Collaboration is essential for enhancing inclusion of people with autism within BAME communities and their families/carers at every level: from diagnosis, to getting an EHCP, to access to relevant services that will enhance their independence in adulthood. Service providers need to broaden the support menu from currently available services to include community integration for autistic people, a culturally sensitive approach to diagnosis, family-specific care and support services.

The main discussion topics which emerged from the presentations related to stigma, late or missed diagnosis, cultural misunderstanding by professionals and lack of trust of professionals from people from the communities. The need to address these concerns through collaboration among stakeholders and community engagement was emphasised.

Martin and Milton (2017) emphasise the role of autistic people as key stakeholders with huge reservoirs of relevant insider experience and expertise to bring to the table. Stakeholders may include, along with autistic experts, service agencies, advocacy groups, parents, schools, family members and friends of families, religious and community heads, disabilities services offices, residential care workers, career services, the metropolitan police, customer services and transport and prison services. Stakeholder involvement in disseminating autism awareness to communities was highlighted as the most important aspect of the action plan by the Symposium participants. It was suggested that the Symposium itself could be used to build a network and a team of activists and agencies to advocate for families and people with autism in the BAME community. The organisers were asked by the participants to prioritise work with schools in South London to develop autism awareness in the first instance.

Discussion on the day highlighted the lack of a comprehensive service for families and autistic people in BAME community. A particular issue which emerged was limited understanding of the cultural context of language and autism between professionals and families. Some participants suggested that there is no word for autism in many languages spoken within the BAME community. Participants shared that this linguistic disconnect, especially if coupled with stigma, often results in misunderstanding, negativity, fear and lack of trust for autism professionals.

All 29 respondents who were asked for feedback said the Symposium was useful. Eight rated the presentations most highly, and eight were particularly happy to learn about research into autism issues in the BAME community. One person commented positively about the diversity of audience, another described being delighted to learn more about Autism Voice UK. One person reported being impressed by personal stories of parents and another commented that they had taken away the message that it was okay to be autistic or have an autistic family member.

Respondents were asked whether the Symposium covered their expectations and to make suggestions for improvements. Out of 29 respondents, 15 said their expectations were met and there was nothing else expected to be covered. In addition, they stated that the event was well organised with several useful aspects of autism covered. Three people noted that there could have been more time for questions and audience interaction. Others believed the Symposium should have covered more related topics such as sex education and autism, the positive sides of autism, more parents’ experiences and information on the impacts of autism on siblings. Further education-focussed suggestions included information on specific interventions, and the problem of exclusion of autistic children from schools. Participants expressed a wish to include people from broader BAME groups and to aim for a wider net of religious representation. Involving more adults on the spectrum and BAME autistic speakers was highlighted. Delegates were particularly focussed on practical solutions to issues affecting autistic people and their families from BAME communities.

Autism Voice UK is a charity and, although it was born out of the BAME community, it cannot and does not wish to restrict access solely to people with BAME heritage. The focus, however, the Symposium attendees felt, should coalesce around an understanding of autism and intersectionality with specific reference to issues impacting the BAME community. People from non-BAME contexts continue to be welcome and Autism Voice UK is mindful of appealing to anyone involved with autism while retaining its particular focus.

Recommendations

Make the Symposium an annual event

The feeling of the participants was that the Symposium could be the beginning of a movement that could address stigma and limited access to appropriate resources through education aimed at autistic people and their families as well as service providers. There is also the need to follow up on the action plan, make reviews and further the discussion in other platforms. It was suggested that the event be made into a nationwide tour. A group within Autism Voice UK tasked with logistics and planning is developing a strategy to ensure that the discussion widens beyond people who attended the Symposium.

Consultative workshop

A consultative workshop took place at LSBU three months after the original Symposium. Its aim was to further the discussion and to set up a taskforce to ensure that the action plan is actualised. Follow- up consultative workshops are planned. These will involve the organisers, autistic people, parents, autism professionals who attended the Symposium and other stakeholders including community and faith leaders. The next meeting will start the process of implementing the action plan aiming for practical and policy changes.

Community engagement

Perceived lack of recognition and acceptance of autistic people in communal spaces in BAME has increased the level of vulnerability of autistic people and their families and led to self-imposed ostracism, social isolation and loneliness. This is likely to have a negative effect on autistic people and their families, including causing poor mental health. Recommendations for community awareness would involve a participatory approach, intensive community engagement involving faith leaders, other community groups and other ethnic groups within the BAME community. The aims would be to enhance positive acceptance and recognition, provide access to appropriate services and reduce stigma.

The essence of sharing perspectives and different strategies with other ethnic minority groups in the BAME community to learn from each other and improve on the existing campaign strategy was discussed. It was also recommended that Autism Voice UK work to strengthen awareness of autism and stigmatisation with community groups. Emphasis was placed on the importance of local councillors engaging in autism awareness through regular trainings and presentations to progress enabling autistic people from BAME backgrounds to be involved in the community engagement.

Schools

School engagement is also important to help bridge the gap between school authorities and families from BAME communities. Autism Voice UK asserts that education service providers, pupils and parents need a basic knowledge of autism to address the individual needs of affected children, develop positive attitudes, reduce bullying and boost acceptance by other children. Social model thinking should underpin any such activity which would ideally be delivered by people with insider perspective.

Contributions to future event

Participants were asked what they might be able to contribute to future event. Out of 29 respondents, 10 stated that they would like to be guest speakers, and 4 were interested in sharing their personal experiences. Research-orientated suggestions included presenting on individual autism research and plans for future autism research. Others offered to present information on the National Health Service and charities in criminal and social justice contexts. Education-focussed offers included presenting on EHCP and working with African parents. Further offers included perspectives on Somali culture and autism, the experiences of a black psychologist and mental health and autism.

Other offers of help from delegates included leading on media coverage, facilitating meetings/events in their London borough and helping with inviting autistic people, specific statutory organisations and local employers to participate. Out of 28 respondents, 13 did not state what they would be able to contribute in the future but expressed an interest in continuing to be involved.

What could we have done better?

Out of 29 respondents, 21 answered the question. Only four rated the event organisation as excellent. Ten recommended a larger venue and better planning to cater for children. Having two rooms would have made the event more autism-friendly and some autistic participants found the children’s presence difficult. The LSBU organisers had not anticipated the presence of children at the Symposium, and said that they could plan for this next time. Other recommendations included starting earlier, encouraging people not to leave before the end, improved time management and café-style seating to facilitate discussions. A brief opportunity for attendees to introduce themselves and say what they would like to take away from the event was recommended. Time management would be of the essence if this were to be built in. Two respondents commented that some speakers did not explain jargon and requested better microphone use. One recommended that presentations routinely end with strategies and solutions. Having a keynote by an autistic person from a BAME background was suggested. The organisers welcomed the constructive feedback and would build in the suggested improvements next time. LSBU and Autism Voice UK also wish to ensure that future activities are inclusive of people who cannot easily access verbal communication, although this was not picked up in the feedback. Dr Sally Brett from the CADS research group has expertise she is willing to share to support this endeavour (Brett, 2018).

Next step for Autism Voice UK

School visits

The need for Autism Voice UK to visit schools in their neighbouring boroughs was emphasised. It is recommended that Autism Voice UK gathers statistics about the number of children with special education needs from minority backgrounds in local schools. Through these school visits, the organisation is expecting to inform parents about available services including those aimed at parents.

Autism awareness for social services

To reduce misunderstanding between autism professionals and families in the BAME community, it was recommended that Autism Voice UK makes contact with social services and offers training to help raise staff awareness about how the BAME community operates. Potentially, with suitable care arrangements, autistic children from BAME communities could be involved in this endeavour. An autistic speaker from a BAME background would be ideal and Autism Voice UK is prioritising finding someone suitable.

Parent support

Autism Voice UK should encourage parents with autistic children in BAME communities to volunteer in their children’s schools governing body if possible. (This comes with an understanding that social support might be required in order for it to be possible). The purpose would be to help influence decision-making that will be in the best interest of children with autism from BAME communities.

Signposting

Autism Voice UK plans to conduct further research on organisations that offer specific services to parents and autistic people with a view to creating a service map. In addition, the organisation will help stakeholders to access helplines and advocacy. Families will also be supported on how to write letters of appeal or request for further support.

E-newsletter

Finally, it is recommended that Autism Voice UK should publish a monthly electronic newsletter to keep the public informed of the organisation’s activities.

Conclusion

The main outcomes of the Symposium were collaborative efforts to ensure autism awareness, regular community engagement and advocacy networking to influence policy changes. There is a pressing need to increase awareness of autism in the BAME community. This awareness must be culturally, ethnically and religiously sensitive.

Autism is still poorly understood by many people in the BAME community. Although most may have come across autistic people, cultural and religious misconceptions about autism may blur their understanding. The Symposium highlighted the need to end the stigma attached to autism as well as to foster recognition and acceptance of autistic people and their families in the BAME community. This initiative requires the support and firm commitment from autism stakeholders across different populations within the BAME community. Autistic experts have much to offer in this endeavour.

Through collaboration with LSBU and PARC, Autism Voice is better placed to realise some of the aspirations outlined in this report. The university views working closely with Autism Voice as a positive thing. This alliance is relevant to the role of LSBU in the community and the social justice agenda of the CSJGR. In addition, students at the university, particularly, but not exclusively, those studying MA Education/Autism, benefit from exposure to the work of Autism Voice.

References

Alqahtani, M.M.J. (2012), “Understanding autism in Saudi Arabia: a qualitative analysis of the community and cultural context”, Journal of Pediatric Neurology, Vol. 10 No. 1, pp. 15-22, doi: 10.3233/JPN-2012-0527.

Anthony, J.H. (2009), “Towards inclusion: influences of culture and internationalisation on personhood, educational access, policy and provision for students with autism in Ghana”, (Doctoral dissertation, University of Sussex), available at: http://sro.sussex.ac.uk/id/eprint/2347/ (accessed 7 January 2020).

Ault, M.J., Collins, B.C. and Carter, E.W. (2013), “Factors associates with participation in faith communities for individuals with developmental disabilities and their families”, Journal of Religion, Disability & Health, Vol. 17, pp. 184-211.

Bernier, R., Mao, A. and Yen, J. (2010), “Psychopathology, families and culture: Autism”, Child and Adolescent Psychiatric Clinics of North America, Vol. 19 No. 4, pp. 855-867, doi: 10.1016/j.chc.2010.07.005.

Blair, K.-S.C., Lee, I.-S., Cho, S.-J. and Dunlap, G. (2010), “Positive behaviour support through family–school collaboration for young children with autism”, Topics in Early Childhood Special Education, Vol. 31 No. 1, pp. 22-36.

Brett, S. (2018), “Pupils’ experiences of authentic voice and participatory practices in a special school”, Ed D thesis, London South Bank University, available at: https://openresearch.lsbu.ac.uk/item/869y0 (accessed 11 December 2019).

CIPD (2017), “Addressing the barriers to BAME employee career progressing to the top”, available at: file:///C:/Users/User/AppData/Local/Packages/Microsoft.MicrosoftEdge_8wekyb3d8bbwe/TempState/Downloads/addressing-the-barriers-to-BAME-employee-career-progression-to-the-top_tcm18-33336.pdf (accessed 8 July 2018).

Department of Health (DOH) (2018), “Think Autism strategy government refresh 2018”, available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/696667/think-autism-strategy-governance-refresh.pdf (accessed 7 January 2020).

EHRC (2010), “How fair is Britain? the first triennial review executive summary”, available at: www.equalityhumanrights.com/uploaded_files/triennial_review/how_fair_is_britain__complete_report.pdf (accessed 10 April 2018).

Ennis-Cole, D., Durodoye, B.A. and Harris, H.L. (2013), “The impact of culture on autism diagnosis and treatment: considerations for counselors and other professionals”, The Family Journal, doi: 10.1177/1066480713476834

Equality Act (2010), (Section 149), HMSO, London.

Haack, B. (2017), “Autism the church and the image of god: a social distance study”, available at: www.researchgate.net/publication/317699224_Autism_The_Church_and_The_Image_of_God_A_social_distance_study (accessed 8 July 2018).

Kim, H.U. (2012), “Autism across cultures: rethinking autism”, Disability and Society, Vol. 27 No. 4, pp. 535-545, doi: 10.1080/09687599.2012.659463

Magana, S. and Smith, M. (2006), “Psychological distress and well-being of Latina and Non-Latina white mothers of youth and adults with an autism spectrum disorder: cultural attitudes towards co-residence status”, American Journal of Orthopsychiatry, Vol. 76, pp. 346-357.

Mandell, D.S. and Novak, M. (2005), “The role of culture in families’ treatment decisions for children with autism spectrum disorders”, Mental Retardation and Developmental Disabilities Research Reviews, Vol. 11 No. 2, pp. 110-115.

Martin, N. and Milton, D. (2017), “Supporting the inclusion of autistic children”, in Knowles, G (Ed.). Supporting Inclusive Practice and Ensuring Opportunity is Equal for All, David Fulton. Routledge.

Matsumoto, D. (1996), Culture and Psychology, Brooks/Cole, Pacific Grove, CA.

Montes, G. and Halterman, J.S. (2011), “White-Black disparities in family-centered care among children with autism in the United States: evidence from the NS-CSHCN 2005-2006”, Academic Pediatrics, Vol. 11 No. 4, pp. 297-304, doi: 10.1016/j.acap.2011.02.002.

Munroe, K., Hammond, L. and Cole, S. (2016), “The experiences of African immigrant mothers living in the United Kingdom with a child diagnosed with an autism spectrum disorder: an interpretive phenomenological analysis”, Disability & Society, Vol. 31 No. 6, pp. 798-819.

National Audit Office (2008), Increasing Employment Rates for Ethnic Minorities, TSO, Norwich.

Nwokolo, O. (2010), “A psychologist’s perspective on the taboo of autism in Nigeria”, Autism Around the Globe, available at: www.autismaroundtheglobe.org/countries/nigeria.asp (accessed 5 April 2018).

Office for National Statistics (ONS) (2016), “A08: labour market status of disabled people”, available at: www.ons.gov.uk/employmentandlabourmarket/peopleinwork/employmentandemployeetypes/datasets/labourmarketstatusofdisabledpeoplea08 (accessed 8 April 2018).

Papadopoulos, C. (2016), “Autism stigma and the role of ethnicity and culture”, available at: http://network.autism.org.uk/sites/default/files/ckfinder/files/Autism%20stigma%20role%20of%20ethnicity%20PDF%20version.pdf (accessed 5 April 2018).

Pitten, K. (2008), “How cultural values influence diagnosis, treatment and the welfare of families with an autistic child”, available at: www2.rivier.edu/journal/ROAJ-Spring-2008/J130-Pitten.pdf, (accessed 5 April 2018).

Pondé, M.P. and Rousseau, C. (2013), “Immigrant children with autism spectrum disorder: the relationship between the perspective of the professionals and the parents’ point of view”, Journal of the Canadian Academy of Child and Adolescent Psychiatry = Journal de L'academie Canadienne de Psychiatrie de L'enfant et de L'adolescent, Vol. 22 No. 2, pp. 131-138.

Slade, G. (2014), “Diverse perspectives: the challenges for families affected by autism from black”, Asian and Minority Ethnic Communities, The National Autistic Society, London.

Tek, S. and Landa, R. (2012), “Differences in autism symptoms between minority and non-minority toddlers”, Journal of Autism and Developmental Disorders, Vol. 42 No. 9, pp. 1967-1973, doi: 10.1007%2Fs10803-012-1445-8.

Tincani, M., Travers, J. and Boutot, A. (2009), “Race, culture, and autism spectrum disorder: understanding the role of diversity in successful educational interventions”, Research and Practice for Persons with Severe Disabilities, Vol. 34 Nos 3/4, pp. 81-90, doi: 10.2511/Frpsd.34.3-4.81

Twoy, R., Connolly, P.M. and Novak, J.M. (2007), “Coping strategies used by parents of children with autism”, Journal of the American Academy of Nurse Practitioners, Vol. 19 No. 5, pp. 251-260.

Wilder, L., Dyches, T., Obiakor, F. and Algozzine, B. (2004), “Multicultural perspectives on teaching students with autism”, Focus on Autism and Other Developmental Disabilities, Vol. 19 No. 2, pp. 105-113.in Pitten, K. (2008), How Cultural Values Influence Diagnosis, Treatment and the Welfare of Families with an Autistic Child, available at: www2.rivier.edu/journal/ROAJ-Spring-2008/J130-Pitten.pdf (accessed 5April 2018)

Further reading

Corresponding author

Nicola Martin can be contacted at: martinn4@lsbu.ac.uk

About the authors

Mariama Seray Kandeh is based at the Autism Voice, London, United Kingdom of Great Britain and Northern Ireland.

Mariama Korrca Kandeh is based at the Autism Voice, London, United Kingdom of Great Britain and Northern Ireland.

Nicola Martin is based at the Department of Education, London South Bank University, London, UK.

Joanna Krupa is based at the Department of Education, London South Bank University, London, UK.

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