Kanye Tagbo-Okeke is not your average teenager. He has broken a Guinness World Record for the world’s largest art canvas, and is now starting his journey to cycle 500km across six Nigerian states — all for autism advocacy.
Behind this remarkable journey is his mother, Dr. Silvia Tagbo-Okeke, a PhD holder in project management and one of Nigeria’s most passionate voices in the autism space. We sat down with her to talk about Kanye’s story, the real cost of raising a child with autism in Nigeria, and why she refuses to stop pushing.
- How did you discover that Kanye has autism?
“It wasn’t a one-time thing. The first trigger was that we noticed he wasn’t talking. When a child isn’t speaking, it’s naturally worrying for parents; that’s how a child communicates with you and with the world around them. He was going from two to three years old, and the absence of speech was the first sign that something needed our attention.
We took him to the hospital, and they told us, ‘Boys don’t talk early.’ But after a while, we knew that something more was going on. So we sought out people who actually specialise in diagnosing children with autism. We took him to OG, who gave us the first diagnosis, and then we went to Canada, where it was confirmed”.
- How has autism shaped Kanye’s extraordinary talents?
“For us, when something happens, you don’t dwell on the negatives; you try to bring out something good from it. That has been our approach with Kanye. Rather than fixating on the autism, the intellectual disability, or the behavioral challenges that can come with it, we lean on our faith. We believe God has been faithful in Kanye’s life by giving him gifts, not just in art, but in sports as well.
The art was almost obvious, honestly. He kept scribbling on the walls, everywhere, all the time. The talent was just there. Over the years, he kept refining and developing his skills.
The cycling came about differently; it was actually coincidental. When Kanye was young, he had an injection that damaged the nerve in his hip by about 99.9%. Part of his physiotherapy for nerve regeneration was cycling. That’s how it started. And here we are today. It’s another example of turning a disadvantage into an advantage”.
- Tell us about Kanye’s Guinness World Record for the world’s largest art canvas. What did that achievement mean for your family?
“Kanye is still Kanye. He’s still an innocent, unassuming boy who loves the simple things in life. That hasn’t changed.
But for us, that Guinness World Record wasn’t just for Kanye. It was for every child like him, all over the world. It was a statement: no child should be left behind. It was a call to end the stigmatisation. It was proof that no matter where a child is, the country, the city, the village; No matter the circumstances they’re born into, with the right attention and care, they can thrive.
We’re not saying every child is a genius. Not every neurotypical child is a genius either. But having challenges doesn’t mean a person doesn’t matter. They are human beings. They deserve to be treated with dignity and with love”.
- What inspired the 500km cycling challenge, the “Ride with Kanye” Guinness World Record attempt?
“Advocacy is not a one-time event. You don’t do one big thing and walk away from it. It’s a continuous commitment.
The world’s largest art canvas was something you had to go searching for, not everyone is into art. But Kanye has energy. Enormous energy. And we asked ourselves: why not let him use what he has to make a difference in the world around him?
That’s the essence of this second Guinness World Record attempt. Everything Kanye does is for advocacy, to draw attention to people like him. If he needs to do something big to get big attention, then that’s what we’ll do. Because we need people looking at policies. We need grassroots involvement. We need schools to step up. We need the health sector to respond. We need corporate organisations to support the NGOs out there doing the work every day. This cycling challenge is about all of that”.
- As a mother of a child with autism, what healthcare barriers have you personally experienced in Nigeria?
“I’ll focus on Nigeria, because that’s where we live.
The honest answer is: it is expensive. Very expensive. When I’m making payments for some of the things Kanye needs, I catch myself thinking: if I find this costly, what about families in villages? What about people who simply cannot afford it? How do they survive? How do they care for these children?
The therapy costs alone are high: speech therapy, behavioral therapy, psychologists, psychiatrists when needed, and the evaluations themselves cost money too. It’s a very demanding condition to maintain financially, and that’s a huge part of why we advocate the way we do. We want the government to recognise this and consider something like a health insurance framework that covers children with autism and other special needs. Even abroad, parents are fighting every day for full health coverage. If we can have that in Nigeria, that alone would be a massive relief for families”.
- What’s the biggest misconception about autism in Nigeria?
“There are a few, and they come from different directions.
The first is the religious misconception; the idea that a child with autism is demonic, or a witch, or possessed. That the answer is to ‘pray it out’. I believe in God. I believe in miracles. But as human beings, while we’re praying for a miracle, we still have to do our part. Don’t keep the child locked away, taking them from church to church, while denying them the interventions and care they need. I don’t think God would be pleased with that either.
Then there’s the pop-culture misconception; the idea that autism only looks one way. People hear ‘autism,’ and they think of the high-functioning, gifted, almost celebrity-like portrayal they’ve seen somewhere. And the reality is that autism is a spectrum. On one end, you have people who are highly functional. On the other hand, you have people who cannot feed themselves. You cannot box it into a single type. People need to understand that if someone is on the lower end of the spectrum, that’s autism. If someone is high-functioning, that’s also autism. It’s a wide, wide range”.
- What is the one piece of advice you would give to a parent of an autistic child?
“From my own experience, I’ll be honest: it is not easy. The road is not easy. And my heart breaks for parents who have two, three, or four children on the spectrum. It is truly not an easy road.
You have to be patient. There are no quick fixes, no 24-hour turnarounds. It is a gradual process. Keep at it. If one approach fails, try another way. If that fails, try yet another. You might take one step forward and feel like you’ve taken 200 steps back, but don’t give up on the child. Love the child unconditionally, irrespective of the challenges. That child deserves love, attention, and care, no matter how difficult the journey gets”.
- What is your hope for the future of autism care in Nigeria?
“We’ve come a long way. Sincerely, a really long way. I’ve watched this country go from barely acknowledging World Autism Day to some states now marking it in a significant way. That recognition alone is progress. It means advocacy is working and attention is being called to the cause.
We still have a long way to go, but I can see the light at the end of the tunnel. I see more organisations getting involved. I see the government and first ladies stepping into this space and doing meaningful work. And the NGOs, about 80% of them founded by moms and dads who have children on the spectrum, they are the real MVPs. What they have done over the years has made a real difference, and what they continue to do will shape the future of autism care in this country.
We’re moving; slowly, but we’re moving, and we won’t stop”.
Kanye’s “Ride with Kanye” cycling challenge covers 500km across six Nigerian states. To follow his journey and support autism advocacy in Nigeria, follow his story on social media.
