By Lillian Mwangi
Eight years ago, when my twin girls were just three years old, they were diagnosed with Autism Spectrum Disorder – a condition related to brain development that impacts how a person perceives and socializes with others, causing challenges in social interaction and communication. Back then, in 2017, autism wasn’t a common topic in Kenya—at least not in my circles. I had only heard the term in passing, maybe once or twice in media conversations, but I never paid much attention to it. It felt like a distant concept that happened to “other people.” I didn’t think it was anything that would ever touch my life personally—until it did. Unlike today, when almost everyone seems to know something about autism, and some even treat it like a fashionable label, there was very little information. I was tossed into a world of uncertainty and fear.
The weight of this diagnosis hit me hard, not just because of the medical implications but because of the emotional, financial, and physical toll it took on our lives. The sudden dietary changes backfired, sparking intense meltdowns and amplifying the emotional chaos we were already navigating. In contrast, the emotional and financial drain from therapies, which often seemed to offer little immediate relief, left me feeling exhausted and overwhelmed. The sleep deprivation and the physical burnout from dealing with the meltdowns added another layer of strain. The psychological torture of societal stigma and judgment, with people offering unsolicited advice and labeling my children, made me feel isolated and misunderstood. The myths and misconceptions around the autism condition were overwhelming. Some attributed the condition to witchcraft. Some people interpreted the meltdowns associated with the condition as signs of demonic possession.
All of this, combined with the constant anxiety over an uncertain future, filled me with fear and doubts about whether I was doing enough or if things would ever get better—my life, which I thought was finally falling into place, suddenly unravelled. I had a young family that was growing rapidly. I had just enrolled for a master’s degree program and my academic career was taking shape. But with those three words—Autism Spectrum Disorder—everything seemed to nosedive. It was this overwhelming weight that eventually drove me straight into depression.
I went through the five stages of grief. First came shock, a numbness I can’t fully describe. Then anger, which I didn’t linger in for long, because who was I supposed to be angry at? God, right? I rushed headfirst into bargaining, hoping, pleading, and trying everything humanly possible to change my children’s diagnosis. I fasted and prayed. I changed their diets. I enrolled them in every therapy I came across. I even attended deliverance services, where they claimed to cast out demons, but mostly they just preyed on desperate parents like me.
I was desperate. I didn’t want autism. I wanted “normal.” I wanted the life I had planned for myself and my children. And for a while, I fought against reality. But in the quiet moments, in between the chaos, the therapies, and the tears, I began to see my daughters for who they were, not just through the lens of a diagnosis. I noticed the beauty in their routines, the joy in their very existence, and the realization that I couldn’t give myself the kind of children I thought I wanted. Slowly, I shifted from grieving the life I imagined to embracing the life I had.
Acceptance came with clarity. And from clarity came purpose. I began to read, learn, and connect with other parents walking the same road. I focused on understanding autism, viewing it as a spectrum of diverse experiences and remarkable strengths. Slowly, I began to open our world through Facebook posts—short reflections on my wall, raw and unfiltered, about therapy sessions, meltdowns, milestones, and bedtime routines. It was my way of processing everything and of reaching out. In 2022, I took a bold step and invited the world into our everyday life through my TikTok platform, Diary of an Autism Mum. I shared snippets of our everyday triumphs, struggles, and everything in between, not to evoke sympathy, but to provoke a change in perception. I set out to create awareness, correct misconceptions, challenge stigma, and advocate for autism acceptance.
If someone had told me, back in those dark early days, that I would become an advocate for autism awareness, I would have laughed bitterly, or maybe even cried. But life has a way of shaping us through our deepest pains. On the 12th of April 2025, I walked onto a pageant runway—nervous, vulnerable, but proud. I had come across a call for participants in the Mr. and Miss Autism pageant, an initiative by Ready Aiders Foundation and Step Up 4 Autism, designed to amplify autism advocacy and unite key stakeholders. Without hesitation, I threw myself into the contest—not because I had the best model poses, but because my passion for autism advocacy spoke louder than my footsteps on that runway. That passion carried me all the way, and I was crowned the Autism Ambassador, Kenya, 2025. I wear that crown not as a symbol of perfection, but of perseverance; of growth; of the countless battles fought in silence; of every meltdown weathered; every milestone achieved; and every tear wiped in the dark of the night. It’s a constant reminder that I have been assigned this mountain to show others that it can be moved.
Today, I advocate not just for my daughters, but for every child and parent navigating life through the spectrum. I want to help create a world where autism is not feared or misunderstood but embraced with compassion and support. A world where diagnosis doesn’t mean despair, but direction. The goal is to build a society where neurodivergent people can thrive just as well as their neurotypical counterparts. My journey is far from over. But with every step, I walk with a purpose.
Bio
Lilian Mwangi is a Lecturer at Jomo Kenyatta University of Agriculture and Technology (JKUAT). She is currently pursuing a PhD in Mass Communication at JKUAT and a second Master’s degree in International Relations at USIU–Africa.