Sacred struggles: Faith, disability and resilience in the silence of autism

I was invited as a guest speaker at one autism centre in Kigali during the celebration of the International Day of Autism, celebrated on April 2 every year. As I took the stage to speak, the room was filled with noisy interruptions by many 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, autism being part of what I do professionally. I decided to take this risk to speak from my heart, though 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 won’t 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 won’t make sense to parents or 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 a 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. When she said yes, when this centre opened its doors, it changed everything. I shared how our son has transformed because of the support the centre has given 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 couldn’t speak as I fought against my own tears. Drawing from my socially constructed masculine strength, we are taught to wear lie armour, I pulled back and became more technical, less personal. It was the only way I could continue. According to the Treetop, 75 million people have autism spectrum disorder (ASD), equivalent to 1% of the world's population. In Rwanda, available data indicate that around 1 in 100 children worldwide have autism, and 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 technical part of my story to parents, children, and therapists, I thought I had gathered enough composure to control my emotions and perhaps ease those of the mother who continued wiping her eyes as tears kept streaming down her cheeks throughout my entire talk. I tried to close my story with a personal tone, though it wasn’t 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? I believe harmonizing faith with the rights of Persons with Disabilities is essential. Both the Bible and the Quran urge religious leaders to uphold the dignity of all individuals and protect the vulnerable. By addressing the accountability concerns that led to the closure of thousands of churches in Rwanda last year, churches might realign themselves with these doctrines: The Scriptural Imperative for Accountability: Each individual shall render an account of themselves to God. — Romans 14:12. This text underscores the obligation of churches to operate with integrity and accountability in their service to congregants. The Bible teaches that every individual is created in the image of God and has inherent dignity and worth (Genesis 1:27). In addition, the bible encourages Inclusion and Unity. It emphasizes the importance of unity within the body of Christ, regardless of differences (1 Corinthians 12:12-27). Caring for the Vulnerable is another duty where the Bible calls Christians to care for the vulnerable and advocate for those who are marginalized (Psalm 82:3-4, Proverbs 31:8-9). Equally, the Quran provides a mandate for justice- Indeed, Allah instructs you to fulfil trusts to their rightful recipients and to adjudicate among individuals with fairness. — Surah An-Nisa (4:58). 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 labour of holding the family together. Parents, I need you to hear this: be resilient. Autism is not caused by witchcraft, the devil, or demons. The truth is that 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 the 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 centres for our children. We need insurance coverage to include autism as a legitimate health condition. To the centres, 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're 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, me included, maintained that masculine façade that permits us to feel everything but show nothing. In contrast, I confirmed the undeniable connection between disability, religion, and gender. Clement Kirenga is an expert in inclusive governance and gender focal point at UNDP Rwanda.

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Sacred struggles: Faith, disability and resilience in the silence of autism