Autism South Africa board member, Kayise Ngqula on raising an autistic child and driving meaningful inclusion

As a board member of Autism South Africa and a mother to an autistic child, Kayise Ngqula brings both lived experience and advocacy to the forefront of the conversation. She shares how these perspectives intersect, the realities families face beyond awareness, and why true inclusion requires more than intention, it demands action

For many families, autism is not a concept discussed in April alone, but a daily, lived reality shaped by systems, support, and society at large. During Autism Awareness Month, conversations often focus on visibility, but for those navigating this journey firsthand, the focus extends far beyond awareness to access, inclusion, and sustainability.

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Autism Awareness Month: Why Love on the Spectrum Matters

Kayise's perspective is both deeply intimate and structurally informed. Here, she reflects on the evolving nature of her journey, the gaps that still exist, and what it truly takes to create environments where neurodiverse individuals and their families can thrive.

GLAMOUR: As both a board member and a mother to an autistic child, how have your personal and professional perspectives influenced each other?

Kayise: They are no longer separate lenses for me. My lived experience as a mother has made my professional work non-negotiable in terms of urgency and accuracy. I don’t engage with autism as a concept, I engage with it as a system that must work for real families. At the same time, at board-level at Autism South Africa, this has afforded me a level of exposure to language, access, and a broader systems view. It allows me to advocate not just for my own child, but for families who may not have the same visibility or resources. It’s where personal experience meets responsibility consciously and with understanding of how policy often disconnects from lived reality and experience. I sit at that intersection deliberately.

GLAMOUR: Can you share a moment in your parenting journey that changed how you understand autism?

Kayise: The shift although inevitable didn’t necessarily happen in a single moment—it was a shift over time. It required me to be less emotional and rather move from a structural perspective. I stopped approaching autism through adaptation and started approaching it through understanding, patience, respect and alignment. Once I accepted that my child was not something to be “corrected” but someone to be supported within his own framework and insight, everything changed. That is when advocacy became clear.

GLAMOUR: What has been the most rewarding part of raising an autistic child?

Kayise: It’s the depth of connection. You learn to celebrate things that the world often overlooks—progress that is quiet, unspoken and not always conventional, but it is incredibly significant and it is measurable in ways that matter deeply. It has made me more intentional and attuned as a parent and more precise in how I define growth whilst expanding my understanding of communication, patience, and presence in a way nothing else can. It makes me more intentional about love.

GLAMOUR: What has been the most challenging part of that journey?

Kayise: The inconsistency of systems. Families are expected to carry an enormous emotional and financial load while navigating fragmented access to therapy, education, and support. The burden is not only personal—it is structural and incredibly complex. And it requires constant planning & advocacy to bridge that gap.

GLAMOUR: What are some of the biggest misconceptions about autism that you still encounter?

Kayise: That autism is uniform, or that it presents itself in predictable ways. It does not. It is a spectrum with varied support needs. Another misconception is that early awareness automatically translates into long-term support. It does not. Sustainability of care is still a major gap.

Kayise Ngqula brings both lived experience and advocacy to the forefront of the autism conversation

GLAMOUR: How can society move beyond awareness toward genuine acceptance and inclusion?

Kayise: Awareness is passive. Inclusion requires action and systems design. Inclusion is not a sentiment but a fundamental right for infrastructure, environments—schools, workplaces, public services that actually consider neurodiversity from the outset, not retrofitted after exclusion has already occurred. It also means shifting attitudes, not just policies. Inclusion is a daily practice.

GLAMOUR: What does meaningful, everyday support for autistic individuals look like?

Kayise: It looks like consistency, trained educators, structured environments, and predictable systems that reduce anxiety and increase safety. It also includes supporting parents & caregivers, because the ecosystem around the child determines outcomes just as much as individual interventions.

GLAMOUR: What should parents look for when choosing schools or support systems for their children?

Kayise: Beyond facilities, capacity is vital. Parents should assess whether the institution has trained staff, measurable inclusion practices, and real flexibility in learning approaches. Is there a genuine understanding of neurodiversity because the real question is not whether a school “accepts neurodiverse children, but whether it is structurally equipped to support them.

GLAMOUR: What advice would you give to parents who are navigating a new diagnosis?

Kayise: Give yourself time to process. Then focus on understanding your child, not just the diagnosis so that you can move into structured action whilst seeking clarity on what support systems exist so that you are able to build your personal & professional teams, early therapists, educators, and medical professionals who understand neurodevelopment. Don’t be afraid to ask questions or advocate. You will become your child’s greatest voice of coordination and advocacy.

GLAMOUR: How can families create more supportive environments at home?

Kayise: By prioritising predictability, structure and emotional safety, as well as consistency. Home environments should allow a child to regulate, to express, and to exist without constant pressure to conform. That requires intentional routines, communication strategies, and shared understanding across all caregivers in the household.

GLAMOUR: What role should communities play in supporting neurodiverse individuals and their families?

Kayise: Communities must actively reduce isolation. That means shifting from passive acceptance to active accommodation in schools, extended families, or social spaces and everyday interactions, it should not be treated as exceptional behaviour, there needs to be a collective understanding and willingness to support. No family should feel like they’re navigating this journey alone.

GLAMOUR: In your work on the board, what key changes or initiatives are you currently advocating for?

Kayise: I am focused on strengthening access to early intervention, improving the quality and distribution of long-term support services, and ensuring that policy aligns and translates into measurable, lived reality outcomes that reduces fragmentation between intent and implementation. It is not enough to have frameworks; they need to be implementable and sustainable.

GLAMOUR: Where do you think policy and public services are still falling short?

Kayise: In execution. The frameworks for services exist in theory, but accessibility, resourcing, and implementation remain inconsistent thus leaving a significant gap between policy and lived experience. Families are often left to navigate systems that were not designed with their reality in mind

GLAMOUR: Why is it important to center autistic voices in conversations about autism?

Kayise: Because without autistic voices, we are interpreting experience from the outside in.
That leads to distortion. Centering lived experience ensures accuracy, dignity, and relevance in how systems and narratives are shaped.

GLAMOUR: What message would you share with other parents raising autistic children?

Kayise: You will find your rhythm. It may not look like what you expected, but it will be yours. This is not a linear journey, and it is not meant to be navigated in isolation. Build your systems early, stay informed, and remain anchored in your child’s reality—not external expectations. The goal is not comparison. It is sustainable support and long-term stability. Most importantly, take care of yourself too because this journey requires you to be well, not just present.