For a start, there isn’t even agreement about terminology. Different people use ‘Kanner’s Autism’, ‘Asperger syndrome’, ‘Autism Spectrum Disorder’, ‘Aspie’, and ‘Autist’. The autistic community has indicated a preference for the term autistic people – so this is what this article uses. Similarly, some people use the term ‘BAME’ to refer to Black, Asian and Minority Ethnic communities.
As the recent controversial report of the Commission on Race and Ethnic Disparities indicates, this term is widely contested with some suggesting it is reductive and misleading as it implies that all people who are ‘not White’ can be categorised into one group. For the sake of this article, then, we will use the term Black in a political sense to recognise all groups who are through ethnicity, culture and heritage othered by dominant hegemonies and have chosen to form a common bond of identity.
So how do these two identities – being Black and being autistic – intersect? Well, that’s complicated too.
Autism exists across all ethnicities, identities, backgrounds and cultures. According to the diagnostic criteria it refers to people who have ‘difficulties in social communication and interaction’ and ‘restricted, repetitive patterns of behaviour, interests or activities’, a sadly negative description. The British Medical Association suggests that over 700,000 people in the UK have been diagnosed as autistic. However, incidence of autism may be far higher due to both failure of identification and to the fact that some autistic people are increasingly viewing autism as an identity rather than a disorder that needs ‘diagnosis’.
The true prevalence of autism therefore is unknown although it is estimated at the minimum to represent 1% of the global population. Until recently identification of autistic people within Black communities was lower than in White communities. The the exact reason for this was unclear although suggestions included lack of cultural responsivity, stigma, limited access to healthcare services, and/or poverty. The National Autistic Society’s Make school Make Sense project in 2007 found inconsistent evidence about the prevalence of autism and that children with autism from Black communities experienced discrimination in relation to disability and ethnicity. It identified that services were not meeting people’s cultural needs and that there was a lack of awareness of rights and relevant services in some communities.
More recent research suggests that there may now be less difference in the identified prevalence of autism between Black and White children although it also suggests that children from Black communities may be being identified as autistic later than their White counterparts.
Parents who took part in the National Autistic Society’s project investigating the experience of autism within the Black community suggested that they felt that they ‘face a raw deal as their needs are not understood in their cultural and religious context’ and that they ‘face more challenges than other communities when trying to access services and gain information’.
The first Autism Voice UK symposium in 2020 sought to investigate some of these issues and – importantly – to give people who are members of both the autistic and Black communities a greater voice. This symposium recognised that cultural, ethnic and religious sensitivities are important, and may be overlooked or not understood by professionals who are not part of the same community. Organisers identified a pressing need for more investigation, favouring research carried out by researchers with insider perspective. However, they also identified that few autistic academics are Black. Current research is having to lean – as with this article – on co-operation and intersectionality between members of the Black and the autistic research communities.
So, what can be done, practically and immediately, to improve the lives of Black autistic people and to support greater understanding across communities? Education, clearly, has an important role, and the need for improved support and understanding at school was a key finding in the NAS Perspectives report. Parents reported that their child’s autistic behaviour was sometimes perceived as aggression or non-compliance, a finding that is distressingly echoed in statistics from the world beyond education. In their chapter Autism and operational policing, Chown and Beardon suggest that for Black people who are also autistic ‘there is a risk of “double discrimination” when interacting with police officers’ (p. 44). Clearly, although education of Black autistic children is hugely important, so is the education of the wider community about how autism may present in both children and adults who are Black.
Perhaps one of the most important ways to do this is for autistic Black people to have greater voice and greater visibility across cultures. The artwork for this article has been supplied by the artist Iqra Barbar, who identifies as an autistic Muslim woman of colour. Black actor Talia Grant, most famous for their role as the autistic character Brooke Hathaway in Hollyoaks, was the first openly autistic actor in a mainstream TV soap. Perhaps the most famous autistic artist of all, Stephen Wiltshire, is Black.
We all of us need to be aware that Black history intersects with autistic history, and that the autistic community is also the Black community. Greater appreciation of these simple facts can only be of benefit to us all.
We – the writers of this article – are aware that we are only scratching the surface of this complex subject. We have yet to fully consider the complex relationship that some Black communities have with disability issues, nor have we addressed the perceived readiness felt by some for medicine to pathologise Black communities for cultural behaviours. Specifically, we have yet to address the presentation of autism in Black girls.
We are hoping to recruit participants who identify as belonging to both the Black and the autistic communities for further research investigating some of these issues. If you are interested in taking part in this, please contact the writers using the contact details given. We hope to follow up this article with details of our findings and further considerations of this issue in the future.