Sacred struggles: Disability, gender and resilience; the deafening silence around autism

I was invited as a guest speaker at one autism centre in Kigali during the celebration of International Day of Autism, celebrated on 2nd of April every year. As I took the stage to speak, the room was filled with noisy interruptions by a number of autistic children, contrasted by a few attentive and calm parents. When I was driving there, I pondered how I would be able to speak without a prepared speech, even though I believed I had a strong grasp of autism. I decided to take the risk to speak from my heart, but I took a few minutes to write a few talking points on my phone. As I was thinking about my entry point, hundreds of them came to mind. Should I tell my 14-year story? No, I will break down, and I may not be able to complete it. Should I speak from the professional angle of disability inclusion as a UN staff member? Something like “Advancing Neurodiversity and the UN Sustainable Development Goals (SDGs)”? No, that would not make sense to parents, nor to our autistic children and therapists in the centre. Should I speak as a father, Christian or gender activist, or disability inclusion advocate? Yes, as I walked to the stage, I quickly decided to connect autism with disability, gender, and religion. After a short self-introduction, I recounted my journey with our handsome 14-year-old autistic son. As I began, I acknowledged that our story spans 14 years, far too much to capture in the allocated 15 minutes. But I would try. I told them about belonging to an association of parents of children with autism. One day during the association’s general assembly, I met a woman I knew to be both a kind Christian and a savvy investor. We invited her to visit, hoping that she might consider establishing a centre for our autistic sons and daughters. We were desperate. Our children were stuck at home, and the challenges felt endless and relentless. She said yes, and when this centre opened its doors, it changed everything. I discussed the positive changes observed in our son as a result of the support provided by the centre to our children. He is less hyperactive now. He can brush his teeth, clean utensils, and respond to simple instructions. Small victories that once seemed impossible. Although he is still non-verbal, we have learnt as parents the need to manage our expectations and to celebrate progress without demanding perfection. As I concluded my story, I could see tears rolling down the cheeks of one female parent as her friend wrapped an arm around her shoulders to comfort her. Her emotions nearly pushed me to a breakdown. I struggled to continue, and for a moment, I could not speak as I fought against my own tears. Relying on the socially constructed expectations of masculinity, which often encourage emotional detachment, I adopted a more technical and less personal approach. It was the only way I could continue. This 14-year journey, explained in 15 minutes, was definitely not sufficient. I did not have time to delve into and share my curiosity about autism, especially around who else is affected. This is important because the figures are startling According [FLS1] to the Treetop, 75 million people have autism spectrum disorder (ASD), equivalent to 1% of the world's population. Available data indicate that around 1 in 100 children worldwide have autism. In Rwanda, there are estimated to be over 19,000 children with autism. All these children need homes and societies that understand, love, and care for them; they need governments that design and implement inclusive and sensitive health and education policies. As I concluded this tactical and technical portion of my presentation to parents, children, and therapists, I believed I had composed myself sufficiently to maintain professionalism and perhaps provide some comfort to the mother, who continuously wiped tears from her eyes throughout my entire talk. I tried to close my story with a personal tone, though it was not easy at all, but I was able to pose the following question: First, can our religious leaders, especially men, interpret the holy books, such as the Bible and the Quran in a way that empowers mothers of children with autism rather than prey on their vulnerability and desperation? Religious institutions can serve as safe havens for parents and children with disabilities, particularly given the high number of practicing Christians and Muslims in Rwanda. Faith communities have the potential to provide support, acceptance, and dignity for families navigating the challenges that come with disability, creating spaces where both spiritual and practical needs can be met. As religious institutions strengthen their accountability and integrity—concerns that led to reforms in Rwanda's religious sector—they are better positioned to fulfill their foundational calling to care for the vulnerable and marginalized. Both Christian and Islamic teachings emphasize the importance of upholding dignity for all individuals, advocating for justice, and ensuring that those who are often overlooked find acceptance and support within faith communities. When churches and mosques operate with transparency and genuine commitment to serving all members of society, they naturally become the safe havens that families affected by disability need most. Secondly, how can we help fathers stay, truly and responsibly show up when they discover their child has a disability? This question haunts too many mothers who find themselves alone in waiting rooms, therapy sessions, and sleepless nights. When the diagnosis comes, some fathers disappear physically or emotionally. They leave their wives to carry a burden that was meant to be shared. We need to name this honestly: too many men abandon their families when autism or disability enters the picture. They cite work, they grow distant, they sometimes leave entirely. Meanwhile, mothers bear the weight of caregiving, advocacy, medical appointments, and the emotional labor of holding the family together. As I concluded the talk, I had some recommendation based on my personal experience: Parents, I need you to hear this: be resilient. Autism is not caused by witchcraft, the devil, or demons. The truth is, autism likely results from a combination of environmental, biological, and genetic factors. Scientists are still learning but what we know for certain is that our children are not broken. They are not cursed. And you did nothing wrong. To government, I know you are very responsive in terms of policies that promote protection and inclusivity, but we need you to go further. We need more affordable centers for our children. We need insurance coverage to include autism as a legitimate health condition. To the centers, we know the investments you have made. We see you, and we appreciate you, but we must speak an uncomfortable truth: regular fee increases are not affordable and inclusive. When I said this, the room erupted in applause. Parents who had been sitting quietly suddenly found their voice through their hands clapping together. Because this is the reality we are all living, but few dare to say aloud. As I stepped down from the stage, I was engulfed by parents weeping tears of recognition, of exhaustion, and perhaps of relief because finally, their truth was spoken aloud. The few men present, myself included, maintained that masculine façade that permits us to feel everything but show nothing. In that contrast, I confirmed the undeniable connection between disability, religion, and gender. Clement Kirenga is an expert in inclusive governance and the gender focal point at UNDP Rwanda.

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Sacred struggles: Disability, gender and resilience; the deafening silence around autism