Learnings from Neurodiversity in BAME Community Conference

Suchismita Majumdar, Research & Policy Officer, ESDEG

I attended the Neurodiversity in BAME Community conference organised by Autism Voice UK at the end of September 2023. As the Policy & Research Officer of ESDEG, a grassroots charity working with ethnic minority migrant communities in the two most deprived pockets of Ealing – Southall and Northolt, I attended the event to learn more about how neurodiversity affects the minority communities. ESDEG has started a SEND Support Services project in 2022 and as an organisation we are learning about neurodiversity and how to help families navigate through the SEND process.

In Autism Voice UK’s words “The conference aims to amplify the voices of BAME neurodiverse people and emphasize the fact that every neurodiverse person deserves acceptance in a community of family, friends, colleagues, and professionals who recognize and honour their full selves, including their neurodiversity, as contribution. It will also inform about current research on neurodiversity in regards to the BAME.”

Mariama Korrca Kandeh Co-founder and CEO of Autism Voice opened the event with a short but sweet introduction and welcome. Her candidness about being nervous and forgetting her words made all of us in the audience immediately connect with her. She emphasised how stigma around neurodivergence negatively impacts not only the neurodivergent person, but also the entire family and stressed on how we need more public acceptance of the needs of the neurodivergent people.

Prof. Nicola Martin gave a very interesting talk on ‘Neurodivergence, intersectionality and Social Model thinking’. Her lecture was a crash course for a practitioner like me on the social and political impacts of the intersecting identities and how the layers of oppression function. Prof Martin explained how socio-economic background is not one of the nine characteristics protected by the Equality Act of 2010 and went on to talk about the social model of disability as opposed to the medical model of disability and how disability is socially constructed. I have highlighted just a few bits of her talk; she covered a lot more. During the Q&A someone asked about her views on diagnosis. Prof. Martin was of the view that at the moment diagnosis is a necessary evil. Ideally schools need to work with kids on the basis of what they are presenting and not only on their labels.

As a grassroots organisation we would like to take this a step further and say that in the current scenario not only diagnosis, but EHCP is also essential to get the right support that a neurodivergent child deserves. We are not surprised by the fact that parents consider EHCP the golden ticket and every year there is a rise in the number of EHCP applications since without the plan children’s needs are not supported by the schools already struggling with severe budget cuts.

The next talk was by Marsha Martin, the Founder and CEO of Black SEN Mamas and the title of her talk was ‘Masking Mamas’. She started her talk with explaining what masking is – suppression of atypical/socially unacceptable behaviour; then went on to describe the strong sense of shame and taboo and the dos and the don’ts in the  ethnic minority communities and how they culturally transmit to the younger generations certain social norms like the pressure to excel academically in school, the preference given to the needs and/or the education of a male child over a female child – these lead to enormous pressure not only on the children but also their parents and how this pressurises the atypical to mask their neurodivergence in order to fit in and be accepted. Marsha explained how isolating this experience can be for black parents of neurodivergent children.

I found the talk really interesting and Marsha drove home the need to view neurodivergence through a cultural lens. As an Indian woman, Marsha’s question about the kind of support/acceptance that girls/women get from their families and their own communities when they have issues, resonated with me. According to Marsha the way forward is to have inter-generational discussions to raise more awareness and knowledge in the wider community about the diverse needs of the neurodivergent children which would lead to greater social acceptance and create a nourishing environment where every child can flourish. We at ESDEG support this approach and have started with various fun inter-generational activities to create more dialogue among the children/youth and the older generation.

Dr Prithvi Perepa, Associate Professor in Autism at the University of Birmingham and part of the Autism Centre for Education and Research (ACER) was the keynote speaker of the conference. He spoke on the need to view Autism from a cultural perspective. Dr Perepa showed how their recent research has found out that all the existing research on Autism stigmatises minority communities and puts the blame on them for lack of awareness on neurodivergence. He then went on to ask if that was the only narrative? Whether the wider social-political systems in the UK was free from all bias? The example he gave was that of the English system not accepting diagnosis from another country. Families who migrate to the UK with diagnosis for their children are again required to join the queue and wait for a diagnosis which results in losing out on right support for the child for a year or two. He touched upon the issue that ethnic minority communities are branded as ‘hard to reach’, yet no one is trying to find out why these communities are not accessing the SEND services, what the hurdles are and how they could be removed. This was an eye-opening lecture and it helped lift the blinkers through which I viewed this discourse. I realised that ever since I started to work in the field of SEND, almost all the articles I read on the subject was from a mainstream perspective and how inequality is a ‘them’ problem. Thank you Dr.Perepa for this fresh perspective.

The last talk that I heard on the day was by Marium Naeem who went on to talk about her experiences of raising an autistic child and the struggles with school to get the right support for her son. I thought it was incredibly brave of Marium to come and share her experience with a wider audience. As a British Pakistani family, she discussed about the inherent racial bias that the systems had when interacting with them, how taken aback the concerned teachers were when they realised that Marium was no push-over, rather a well aware and vocal mother who was also a busy professional. I could relate to the struggle since I have worked closely with a British Pakistani mum who went through a similar struggle. Marium’s family comes from a well-to do professional background. If you want to know about the hurdles faced by ethnic minority families from low-income households, we have a blog post here.

I had to leave after this and missed Tumi Sotire’s talk on ‘Daily Transition and Change by a Black Dyspraxic’.

It was a very well organised event running on time, warm welcome by the women who organised the event, good food and of course really interesting and useful content. I look forward to attending the conference next year. If you want more information about the event, check out their newsletter.

Disclaimer – During the conference all the speakers covered a lot more in their presentations, I have captured a gist of their talks and in case of any error or lapse it is entirely on me.