‘Change often starts small – with a single conversation’

In Newham, London, where diverse cultural practices intertwine, addressing stigma often requires nuanced approaches. As a British Pakistani working closely with families from South Asian backgrounds, I noticed recurring themes: reluctance to seek a diagnosis, apprehension about discussing their child's needs, and limited awareness of available support. In many cases, fear of judgment from extended families or social circles led to delays in accessing critical interventions.

The tipping point for me was seeing parents struggle with misinformation, such as associating Learning Disabilities and Autism (LDA) with poor parenting or spiritual punishment. One mother I worked with believed her son's struggles at school stemmed from her own 'lack of discipline' or improper parenting. Another family was torn between seeking professional help and adhering to traditional beliefs that framed the child's behaviour as a spiritual issue needing prayer rather than intervention.

These challenges highlighted a deeper systemic issue: how stigma creates barriers to access and leaves families feeling unsupported. To address this, I decided to take action. After an initial attempt to host focus groups for Bengali parents failed due to lack of participation, I secured funding through the East London Foundation Trust (ELFT) Charity Small Grants program. This funding allowed me to develop a series of structured focus groups tailored to South Asian parents, particularly those new to navigating developmental services.

The project

The project began with targeted recruitment. I identified South Asian parents on the waitlist in the service and invited them to join sessions. Flyers and PowerPoint slides introducing the program were shared, and community spaces like schools and local organisations helped spread the word. These efforts ensured parents were familiar with what the sessions would entail and how they could benefit. Parents were reassured that these sessions would be informal and nonjudgmental, focusing on understanding and practical support. 

An initial coffee morning and four sessions were planned, each focusing on key areas.

Coffee morning, and Session 1: Building Awareness
The initial coffee morning was critical in setting the tone. Parents expressed gratitude for having a space to connect and share their stories. Many shared misconceptions they had encountered, such as the idea that challenging behaviours stem from a lack of discipline or that autism only affects certain socioeconomic groups.

The session highlighted a clear knowledge gap about learning disabilities. While most parents were familiar with autism symptoms like sensory challenges and social communication issues, understanding of learning difficulties was limited to broad terms like 'falling behind in school'.

Session 2: Accessing Services
Parents were often unaware of the roles played by various professionals, such as occupational therapists or speech and language therapists. The referral process to CAMHS was another source of confusion. To address this, we provided a flowchart outlining the steps from diagnosis to intervention. Parents later shared how this clarity reduced their anxiety and helped them manage expectations.

One striking discovery was the disparity in experiences based on exposure. Parents who had lived in the UK for a longer time were more open to discussing diagnoses and seeking help, whereas newer immigrants hesitated, fearing judgment or exclusion.

Session 3: Cultural Stigmas and Social Dynamics
This session focused on the cultural and religious factors influencing perceptions of LDA. Parents shared stories of family members dismissing diagnoses as 'Western concepts' or pressuring them to avoid labelling a child. For some, extended family dynamics added to the strain, as grandparents or in-laws discouraged seeking help.

However, there were moments of hope. Social media, particularly WhatsApp and Facebook groups, emerged as valuable tools for parents to access information and support discreetly.

Session 4: Evaluation and Feedback
The final session revealed a recurring theme: parents felt more empowered to advocate for their children. Many noted that understanding the referral process and available services reduced their anxiety. Some requested additional resources, such as sessions for siblings to better understand their diagnosed brother or sister.

Parents also suggested including a comprehensive list of professionals and their roles in diagnostic booklets, which could prevent confusion and delays in accessing appropriate help.

Lessons learned

This project reinforced the importance of listening. When parents described feeling isolated and judged, it became clear that the stigma wasn't just about LDA – it was about the fear of being misunderstood or excluded. By simply providing a space where they felt heard, we were able to build trust and foster community.

Another key takeaway was the transformative power of knowledge. For many parents, understanding what LDA actually meant was the first step toward overcoming stigma. The flowchart we introduced, explaining the referral process and roles of professionals, became more than a resource– it was a lifeline. It gave parents clarity and confidence, helping them to navigate a system that previously felt overwhelming.

I also realised how deeply connected these issues are to family dynamics. In South Asian households, where extended families often play a significant role, stigma can become magnified. Parents shared how in-laws or grandparents dismissed their children's challenges, making it harder for them to seek help. This highlighted the need to involve entire families in conversations about LDA, not just individual parents.

Reflecting further, it was clear that stigma is often rooted in fear – fear of being judged, fear of the unknown, and fear of change. By addressing these fears with compassion and clear, actionable information, we saw how parents could transform their own perceptions and those of their families.

Building towards change

This is a story of transformation – both for the parents and the professionals working with them. Misconceptions about LDA in South Asian communities are not insurmountable; they reflect a need for education, dialogue, and support. By investing in culturally sensitive programs, we can ensure that every child, regardless of background, has access to the support they deserve.

Newham taught me that diversity is both a strength and a responsibility. Addressing the unique challenges of South Asian families requires us to adapt, listen, and innovate. Through initiatives like this, we can create a more inclusive, understanding, and supportive environment for all.

Reflecting on this journey, I see a clear path forward:

Tailored support systems: Support services must adapt to the cultural contexts they serve. For South Asian communities, this means creating resources that are accessible, relatable, and inclusive. Materials should be available in multiple languages and address cultural sensitivities without compromising on accuracy.

Community-led interventions: Partnering with schools, mosques, and local organisations can amplify impact. These trusted institutions can act as bridges, fostering dialogue and encouraging families to seek help without fear of judgment.

Family-centered education: Addressing stigma requires a whole-family approach. Workshops or resources tailored for grandparents, siblings, and extended family members can help shift attitudes and create a supportive environment for the child.

Sustainable peer networks: One of the most powerful outcomes of the focus groups was the sense of connection parents developed with each other. Creating ongoing peer support groups, whether in-person or online, can ensure that parents continue to feel empowered and supported long after initial interventions.

Broader implications

As an aspiring British Pakistani psychologist, I view this work as a bridge between my cultural heritage and professional practice. It reflects a broader truth: that effective mental health and developmental support must respect the unique contexts of the communities it serves. Diversity is more than a demographic reality; it's an opportunity to innovate and connect.

The work has implications far beyond the South Asian community. It reminds us of the universal need for culturally tailored mental health interventions. Whether working with immigrant families, minority groups, or underserved populations, the principles of listening, adapting, and collaborating remain vital. As psychologists, educators, and advocates, we have a duty to meet families where they are – to listen to their concerns, understand their fears, and provide them with tools that resonate.

This project was not without its challenges. One of the most significant hurdles was convincing parents to attend the sessions. This required persistent outreach, thoughtful communication, and a great deal of reassurance. Many parents were initially hesitant, burdened by scepticism, lack of time, or fear of judgement. Overcoming these barriers took empathy, patience, and consistent engagement. I worked hard to convey that these sessions were not just a resource, but a safe and supportive space for them to share, learn, and grow.

The effort was more than worth it. Witnessing the transformation in parents was profoundly rewarding. At the start, many of them felt isolated, overwhelmed, and unsure of how to navigate the challenges their children faced. Some expressed feelings of helplessness, while other simply lacked access to reliable information or community support. Over time, as they attended the sessions, engaged with experts, and connected with one another, their confidence began to grow.

Parents who once hesitated to speak up, now asked thoughtful questions and shared their own experiences. They began to understand the systems and resources available to them, recognising their vital role in advocating for their children. By the end of the program, many had evolved into informed, empowered advocates, equipped with the knowledge and tools to make meaningful decisions for their families.

What stood out the most was the sense of community that blossomed. Parents supported and uplifted one another, forming bonds that extended beyond the program itself. This journey wasn't just about imparting information; it was about fostering resilience, empowerment, and a shared belief that every family deserves the opportunity to thrive.

The stories from these focus groups remind me that change often starts small – with a single conversation, a single parent finding the courage to challenge a misconception, or a single resource that makes a daunting process feel manageable. But these small changes ripple outward, influencing families, communities, and systems.

• Laraib Siddique is an Assistant psychologist at ELFT