In May 2024, Taraki’s Punjabi Women’s Forum came together to discuss Neurodiversity. You can read a summary of the discussion here.
In May 2024, the Taraki Women’s Forum met to discuss Neurodiversity. The session, led by an expert community speaker, aimed to raise awareness, and understanding of neurodiversity within Punjabi communities. The term ‘Neurodiversity’ refers to the different ways an individual’s brain processes information. It encompasses conditions such as autism, ADHD, dyscalculia, dyslexia, and dyspraxia. Neurodivergence is not necessarily a disability in itself but rather a difference in how individuals think and experience the world.
The forum opened with icebreakers and introductions, providing an opportunity for participants to become acquainted with each other and the Punjabi Women’s Forum. Approximately 1 in 7 individuals in the UK are neurodivergent; this includes but is not limited to being autistic, having ADHD, dyscalculia, dyslexia and/or dyspraxia. Despite many individuals identifying as being neurodivergent, there is often a lack of awareness and understanding about the differences between being neurodivergent, disabled and or living with a mental health condition.
Bayparvah, a research officer with Taraki, who is currently completing her PhD research on how autistic individuals process faces, shared her lived experiences, research learnings and clinical experience gained from academic training over the past six years. She opened the floor for attendees to share their experiences, which highlighted challenges such as trying to communicate identity-related aspects of being neurodivergent to non-English speaking parents and loved ones and the lack of culturally sensitive awareness and support for Punjabi neurodivergent folks.
Perceptions of Neurodiversity in Punjabi Communities
The forum delved into the perceptions of neurodiversity within Punjabi communities. Bayparvah shared what she learned from community research and focus groups, which were run in partnership with grassroots, user-led groups at Gurdwaras. Through this work, she was able to explore the cultural and karmic beliefs which were used by some to explain why someone may be disabled and/or neurodivergent and the harmful impact that these beliefs have had on community members. However, she felt very grateful to have also learnt how parents, particularly mothers of neurodivergent children, supported one another in places where government support from councils and schools fell short. Discussions with community members revealed discomfort and a pressing need for culturally sensitive and accessible support.
Bayparvah also shared her involvement with BBC Asian Network and the Sikh Neurodiversity Network with an emphasis on the community's inherent strengths and pre-existing support systems. Her preference to discuss her personal experiences and creating support options through existing community strengths underscores the forum's focus on empowerment, access, and support.
Gaps in Research and Support for Punjabi Women
The forum highlighted broader gaps in research and support for neurodivergent women, specifically for neurodivergent Punjabi women. Generally, it has been considered that women are more likely to mask their neurodivergent traits than men, leading to higher misdiagnosis rates of mental health conditions. Specifically for neurodivergent Punjabi women, factors such as intergenerational trauma, immigration, and cultural gender expectations may influence a woman's self-identity, self-understanding, and access to the right care.
Some of the potential needs identified for Punjabi communities included i) early access to a diagnosis, as many non-Punjabi women are receiving one into their late 20s, ii) the pressing need for services that respect and understand cultural nuances concerning mental wellbeing and being neurodivergent, iii) community- integrated support systems to provide more effective support and iv) access to clear, honest and de-stigmatized information on medication usage where appropriate.
Exploring Potential Avenues of Support
Punjabi neurodivergent individuals, parents, and caregivers are already making strides in raising awareness and providing community-centred support. National organisations could benefit from learning from these community-led initiatives to meet gaps in national care provision.
Accessing a Diagnosis
Diagnoses can be obtained through NHS or private routes. An official diagnosis can open pathways to medication, support, and a better understanding of one’s identity. However, the trauma associated with a diagnostic label and the lack of culturally sensitive support before and after the process were significant concerns.
Psychological Support
Neuro-inclusive therapy, coaching programs, and self-support guides are available. Peer support groups, such as the Punjabi Women’s Forum, and community groups on social media can offer additional culturally sensitive support.
Support at University and in the Workplace
Attendees were also encouraged to seek support from their institutions where it felt appropriate and safe to do so. For example, students at university can access support through Mental Health and Disability Services and can apply for free governmental schemes (Disabled Students’ Allowance) to access study skills support. At work, seeking reasonable adjustments and accessing Right to Work schemes can provide necessary accommodations.
Recommended Resources:
• Sikh Neurodiversity Network (support open to non-Sikh folks too)
• Autistic Girls Network
• Incluseva (Leamington & Warwick)
• Neurodiversity & Me- blog post by Sukhjeen Kaur
• National Autistic Society
• Autistica
• ADHD UK
Recommended Books:
• Letters to My Weird Sisters by Limburg
• Understanding ADHD in Girls & Women by Steer
• Stim Anthology by Huxley-Jones
Conclusion
The forum concluded with members feeling informed and empowered and a calling for national government organisations to work with community groups like Taraki to provide culturally sensitive and accessible support. There is a call for faith-based places to continue to work with and support community members by offering neuro-inclusive accommodations and safe places for neurodivergent individuals to connect and support themselves through their faith.
Understanding neurodiversity within Punjabi communities requires ongoing dialogue, culturally sensitive approaches, and community-integrated support systems. The Punjabi Women’s Forum is a crucial step towards fostering this understanding and providing the necessary support for neurodivergent individuals.