From silent struggles to global autism advocacy and campaign for SA 'Sunflower Lanyard' – Dr Emile Gouws

From overcoming immense personal challenges to becoming a global autism advocate, Dr. Emile Gouws’ resilience and ‘vatbyt’ is remarkable. Diagnosed at three and largely nonverbal until 15, Gouws with the help of his mother and a determined team defied expectations to earn a PhD and is now a postdoctoral fellow at the University of South Africa. He also secured a role in the Commonwealth Disabled People’s Forum and helped shape South Africa’s response to the UN on disability rights. Gouws told Biznews in an interview that he also found a sense of belonging in the Special Knead Café in Sandton that also has a Facebook and Instagram page for awareness and support, which recently organised a march for neurodivergent voices on South Africa’s disability bill to the Union Buildings in Pretoria. Now, he’s calling for a Ministry of Disability and the adoption of the Sunflower Lanyard at clinics, airports and supermarkets to support those with hidden disabilities..Sign up for your early morning brew of the BizNews Insider to keep you up to speed with the content that matters. The newsletter will land in your inbox at 5:30am weekdays. Register here.Support South Africa’s bastion of independent journalism, offering balanced insights on investments, business, and the political economy, by joining BizNews Premium. Register here.If you prefer WhatsApp for updates, sign up to the BizNews channel here..Watch here.Listen here.Edited transcript of the interview.Linda van Tilburg (00:00.302) Autism is increasingly understood through the lens of neurodiversity rather than something requiring correction. With expanded diagnostic criteria, greater awareness, and shifting societal perspectives, understanding continues to evolve. Dr. Emile Gouws, a postdoctoral fellow at the University of South Africa and a leading international advocate for autism, joins BizNews to discuss his work. Emile, can you tell us about your personal journey with autism? Emile Gouws (00:01:30) Yes, I know firsthand what it feels like to be excluded due to a lack of understanding about the capabilities of autistic individuals. I was non-speaking for the first 15 years of my life. I understand the discrimination faced by those society perceives as not fitting into public spaces. I also understand the painful misconceptions surrounding autistic people and their families. And, of course, I understand the silent burden of the mental health challenges these individuals experience. When you ask about my autism self-advocacy journey, it emerged from a very dark place. There was a time when I believed that society wasn’t built for someone like me. That belief pushed me to the brink, and I attempted suicide. I am honest about this because it reflects the reality autistic people face in South Africa. Research shows that South Africa has the highest suicide rate among autistic people in the world, with an average life expectancy of just 35 years. Yet, through that darkness, I found purpose. My inspiration to become a self-advocate emerged from those quiet, invisible moments when I felt that, as an autistic child, I was growing up in a world that often defines existence through conformity. I had two choices—shrink into silence or rise with purpose. I chose the latter. But I want to be clear - this journey has not been solitary. I walk this road with my support system, including my wife, Sammi, alongside her mother, Ma Kim Hicks - our rock, our carer, our daily source of wisdom and belief, and a fellow autism survivor. We believe that family and continuous support are the heartbeat of resilience. On this advocacy journey, we work with Special Knead Café, a physical and online space promoting awareness and inclusion. Our *Special Knead Café* Facebook page is more than just a platform - it’s a community where stories unfold, where we raise awareness, share our day-to-day lives, and advocate for change. It’s raw, it’s real, and it’s rooted in love and continuous acceptance. Anyone is welcome to join. Linda van Tilburg (04:44.504) What misconceptions about autism do you want to challenge in South Africa specifically? Emile Gouws One of the most damaging misconceptions is that autistic people must fit into a specific mould or that there is only one "correct" way to communicate. The truth is autism is a spectrum of beautifully complex abilities. We are not broken - we are different. And difference is not a defect. I challenge these myths through action. In my work as a postdoctoral fellow and as the president of the Board of Directors of the International Council on Developmental Learning, I champion developmental and respectful practices. My research examines the enormous gap in understanding and how different cultures perceive neurodivergence. Advocacy has given me a global voice. Through my advocacy and research, I have contributed to South Africa’s official response to the United Nations, helping to draft the *Shona Report*. As a representative of underrepresented groups on the Commonwealth Disabled People’s Forum, I have elevated African autistic voices at major events such as the Congress of State Parties at the United Nations in New York. But it’s not just about boardrooms - it’s about making sure our stories are heard everywhere. Social media, public spaces—anywhere change can happen. There’s a saying I live by: ‘Leave no one behind and Nothing about us without us.’ These must remain at the heart of autism advocacy. Linda van Tilburg (07:01.486) You’ve made an impact globally as well. How did these international bodies get to know of you? How did you gain that recognition? Emile Gouws It’s actually a funny story. When I was at my lowest, I was in a psychiatric ward. You can look me up on LinkedIn, where I wrote an article about it. That article is also published on Special Knead Café where I describe my advocacy journey. To put it simply, in my darkest moments - after my suicide attempt - I spent a week in a psychiatric ward. There, I received intensive therapy, where I discussed my challenges. A psychologist at the hospital recommended that I pursue self-advocacy - not just to share my experiences but to help parents of autistic children see what’s possible. Most importantly, they encouraged me to build my own self-confidence. That’s where my journey truly began. After leaving the hospital, the psychologist introduced me to Special Knead Café in South Africa, where I shared my story. I connected with organisations and started speaking to parents. My biggest satisfaction came from knowing that if I could give hope to just one parent, it would all be worth it. One parent became two, and the audience grew. I was invited to speak at major education and corporate events. My big break came in 2019 when I was asked to represent South Africa at the United Nations. That eventually led to my election to the Commonwealth Disabled People’s Forum. From there, my advocacy grew - no longer just for myself, but for the broader neurodiverse community. My advocacy is intertwined with my research and my personal life. One of the greatest lessons I’ve learned is that, together, we are strong. You can advocate on your own, but a support network is what truly helps individuals achieve greater rights. Linda van Tilburg (11:09.474) There’s a disability bill that will soon be signed by President Ramaphosa. Does it address your concerns for people with disabilities? What would you like to see happen in South Africa? Emile Gouws We need to understand the broader context and acknowledge that many organisations and stakeholders - both in government and civil society - have contributed to this disability policy. It stems from Africa’s commitment in 2007 when we signed the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The UNCRPD, which governs the global disability rights movement, played a major role in shaping our constitution. This framework laid the foundation for *White Paper 6* and various inclusive policies that South Africa has since adopted. When South Africa signed the UNCRPD, it did so without hesitation or adjustments, embracing the principle of ‘Leaving no one behind.’ That is where the disability bill comes in - it aims to represent all disabled people across South Africa, ensuring their inclusion in civil society and education. In my field, neurodivergent voices must be heard, and no one should be left behind. On 29 March, Special Knead Café organised a march to the Union Buildings, advocating for the inclusion of neurodivergent voices in the disability bill. My team and I, as members of the UNCRPD committee - not only at the Commonwealth level but also through contributions to the United Nations - are working to ensure that these voices are recognised. We need to address the gaps we’re experiencing, particularly in employment, carer support, social grants, and ensuring neurodivergent individuals have a sense of purpose within an inclusive education system. Linda van Tilburg (13:36.448) What response are you hoping for from the government? Emile Gouws (13:37.00)We’re awaiting a response from the president to an memorandum we submitted during the march. One of our key demands is the establishment of a Ministry for Disability to directly address these issues. Of course, as I mentioned earlier, these challenges exist worldwide, but as a developing country, South Africa faces even greater obstacles. That’s what we’re advocating for. There is some scepticism from organisations that have been involved in disability rights for years, largely due to past disappointments with the government. Personally, I believe we need to come together. Being part of the discussions around this new disability bill, I’ve seen the importance of ensuring neurodivergent voices are included and that invisible impairments - unseen challenges - are properly accommodated. Most importantly, ‘no one must be left behind.” Linda van Tilburg (14:45:00) You’ve spoken about your journey and the importance of support. What advice would you give to parents of autistic or neurodivergent children? Emile Gouws (15:46.862) It’s interesting because I always tell parents that their support system needs to be strong. Everything starts at the ground level - whether in schools, within families, or in wider society. We all need to work together to ensure autistic individuals can thrive, feel included, and contribute meaningfully. For parents, especially within the household, my advice is simple: build a strong support base. This journey is long and often difficult, but having a solid foundation makes all the difference. I’ve seen inspiring advocacy movements led by young parents, particularly fathers, who are fighting for their children’s rights. This is crucial, especially in South Africa, where cultural perceptions of neurodiversity vary widely. There’s still a major gap in understanding across different communities. Autism advocacy humbles you when you realise it’s a lifelong journey. I see a future where neurodivergence isn’t just acknowledged but *celebrated*. A world where inclusion isn’t an afterthought - it’s co-created by autistic individuals themselves. But it all comes back to strong support. That’s my biggest advice to families. Linda van Tilburg You’ve been a strong advocate for bringing the ‘Sunflower Lanyard’ to South Africa. Can you explain what it is and why you believe it’s needed? Emile Gouws (17:22.018) Thank you for asking this question - it’s such an important initiative, not just for South Africa but globally. Fortunately, some airlines and major airports already recognise it, and staff are trained on its significance. Ma Kim has been advocating for its adoption here in South Africa. To explain, the ‘Sunflower Lanyard,’ also known as the Hidden Disability Sunflower, is a discreet tool used worldwide to indicate that the wearer has a hidden impairment and may require additional support, time, or understanding in public spaces. A recent experience highlighted its importance. My family used the Sunflower Lanyard while travelling through major airports, and it made a huge difference. Staff recognised the symbol, understood our needs without explanation, and made accommodations accordingly. The lanyard was first launched in the UK in 2016 by a major airline. It’s a simple green lanyard decorated with bright yellow sunflowers, but its purpose is powerful - it signals to staff and the public that the wearer has an invisible disability. This could include autism, anxiety, chronic fatigue, hearing loss, or other hidden impairments. Crucially, wearing the lanyard is a personal choice and doesn’t require documentation. That’s the essence of true awareness. It ensures people receive understanding and support without having to constantly explain themselves. Beyond airports, the Sunflower Lanyard is recognised in supermarkets, healthcare settings, and public transport systems across the world. It empowers autistic individuals and others with hidden disabilities - people who may struggle with communication or sensory processing but don’t have an obvious visible impairment. When staff see someone wearing the lanyard, they are encouraged to be patient, understanding, and ready to assist. It’s something we *desperately* need in South Africa. I can tell you from experience - it would have made our lives much easier if we had this, not just at airports, but across society. Without needing to say a word, people were aware, and those educated about autism took the initiative to accommodate us. That made all the difference. Linda van Tilburg Emile, thank you so much for speaking with us. Emile Gouws It was truly an honour. Thank you.

From silent struggles to global autism advocacy and campaign for SA 'Sunflower Lanyard' – Dr Emile Gouws

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