With everything that is going on in the news and on social media at the moment concerning black lives matter and George Floyd it was only fitting to write this week’s blog on the intersectionality of BAME (Black, Asian, minority ethnic) and autism. Despite there being over 700, 000 people living with autism in the UK, from a variety of backgrounds, identities, and cultures there is little research on the experiences and challenges of black, Asian and minority ethnic individuals with autism. Therefore this week’s blog will be a research post that aims to outline some of the barriers of autistic BAME individuals and their families and identify some of the ways you can help.
The Research: Diverse perspective
After producing studying a variety of research, The National Autistic Society realised that there was a lack of information about the experiences and challenges faced by BAME communities with autism. So, in 2012 they set out to address this need by carrying out a focus group of parents, careers, and children with autism to explore the barriers they face in accessing service. 130 people participated in this research, of which 71 identified themselves as either Asian or specified Indian, Pakistani, Bangladeshi, Chinese, and Vietnamese. 56 identified themselves as black, 2 as white, and 1 as Middle Eastern. Participants were asked to consider three key questions.
- What support do you and your family need in relation to autism?
- What are the challenges in getting the help you need?
- If it has been difficult to get help, why do you think that is?
Those involved were encouraged to consider the potential impact of ethnicity, faith and religious beliefs, gender, and language when considering the questions. In short, many families stated that their difficulties were down to their Childs autism and not their ethnicity. Although this was the case many also faced additional barriers that appear to reflect shared experiences within BAME communities.
Getting a diagnosis
The first challenge that was experienced by all was the challenge of getting a diagnosis. While this is a challenge for all it may be particularly apparent in BAME communities as they are tend to live in higher inequality areas that are underfunded. As a result, they may lack the necessary infrastructure or their services may not meet their cultural needs.
This is evident in the study produced by The Equalities National Council and Scope (2012) which found that many disabled people from BME (black and minority ethnic) backgrounds in the UK are unable to access the services they need.
They reported that 44% of BME disabled people are living in household poverty, compared to 32% of all disabled people and 17% of the population as a whole.
Schools not noticing the signs of autism
Another challenge that was experienced by the group as a whole was that schools were not noticing the signs of autism. The group discussed how often their children when labeled as having behaviour problems. Again this could be more apparent with black children, boys in particular because of prejudice and stereotyping. Too often, people’s first assumptions with black children, is that they are naughty and have behavioural difficulties. They often because of this don’t look any further into the issues that the child is facing.
Similarly, failing to notice delayed development and speech is prominent in BAME children with autism as often English is not their first language so speech development is put down as them having difficulty learning and using English.
Shame and Blame
Shame and blame was also another common factor between parents and careers of this group. Due to a lack of knowledge and awareness of autism within communities and religions, bad behaviour was often put down to bad parenting. Families felt embarrassed about taking their autistic child out in public. Not only that but some BAME communities may hold a stigma about disabled children so parents may avoid talking about the topic. There is a real need for more autism resources and awareness to be available in a variety of languages to help BAME communities battle this barrier.
Cultural Stigma and Negative views
This is something experienced far more by BAME families and individuals with autistic children. As mentioned previously one cultural view is that autism as a disability is not a condition but bad parenting and is something that can be ‘cured’. There is a lack of role models or high profile cases of autistic BAME individuals and as a result some associate it to be a white-only condition.
Language and Communication Barriers
Information on autism in the UK is primarily in English and for BAME families this can be a difficulty as some may speak no, or little English making the information inaccessible to them. They often have no access to translators and when interpreters are available the information they relay is not always accurate as they can misunderstand or insert their own cultural assumptions, losing the clarity that professionals can offer. Those that can speak English have stated that they struggle reading the information because it contains too much professional jargon or that they do not feel comfortable asserting themselves in discussion with a UK professional about their Child’s health and education
There are still so many more challenges facing BAME autistic individuals and their families. (i.e. Denial, isolation of parents and careers, and difficulty finding the right support). For more information on these and other challenges faced by BAME autistic individuals please see the link. As previously stated we have been able to recognise just a few to see the full extent of the inter-sectional challenges of BAME autistic individuals. There must be more research done.
What you can do to help raise awareness of these challenges:
Write to your local MP
Let them know how you feel about the subject, educate them on the lack of research on BAME in autism. Ask them to raise this issue and make sure that Policy-makers and commissioners properly assess the needs of BAME communities when producing autism policy and commissioning autism services.
Raise awareness of this issue on social media, to your friends and family.
Check in with your Groups and friends
If you know of any autistic groups or have friends or family that identify as being BAME and autistic, ask them what you can do to help lessen the challenges they are facing. Similarly, with autistic support groups, check-in and make sure that they are discussing this and are doing all they can to support individuals and families who are Black, Asian, Ethnic minorities with autism.
We hope that you now have a greater understanding of the intersectional challenges facing autistic BAME individuals and their families. Now we hope that you understand how you can help address these issues.
Stack Recruitment stands in complete solidarity and we will not be silent. What we do on the surface is important – through social media, hashtags and statements we can help create awareness. What we do beyond this is vital in order to create systemic change of the challenges the black community face globally.
Stack’s mission is to help autistic job seekers find meaningful employment. For more information contact us.