When Kayode Yusuf’s second son turned four and still hadn’t spoken a word, he feared something was wrong. He didn’t respond to his name, avoided other children, clung to routines, and cried for hours when they changed.
“I remember thinking, maybe he’s just slow,” Yusuf said. “But deep down, it was more.”
Both of Yusuf’s sons, aged six and four, had been diagnosed with Autism Spectrum Disorder (ASD). Since then, he and his wife have spent nearly everything they have searching for answers: school aides, speech therapy, dietary support, and occupational specialists.
Their story is shared by thousands of Nigerian parents, many of whom gathered for the 15th Annual GTCO Autism Conference held in Lagos recently and the Clinics put together by GTCO for one-on-one sessions. It was followed by a free consultation clinic with medical experts, psychiatrists, speech therapists, educational psychologists, behavioral analysts, and clinical consultants, who offered individualised support to families.
These parents spoke openly, some for the first time, about their struggles, fears, and lessons. For them, autism is not a trending diagnosis or a textbook case but a daily journey, often traveled alone.
The global reality and the local gap
According to a 2024 study published in The Lancet, autism affects an estimated 61.8 million people globally, making it one of the most widespread neurological conditions worldwide. The National Institutes of Health (NIH) further reports that boys are significantly more likely to be diagnosed than girls, with a male-to-female ratio of 3 to 1.
Yet, in Nigeria, the condition remains underdiagnosed and misunderstood. Data garnered from the Etta-Atlantic Memorial Hospital showed autism prevalence in Nigeria is estimated between 0.8 percent and 2.3 percent, though numbers are imprecise due to poor reporting systems. Furthermore, most parents describe discovering their children’s autism not through structured screenings or early interventions, but through sheer parental instinct, when something just “felt off.”
One parent recounted how her son, despite attending a top-tier school, couldn’t hold a conversation or respond to his name. “At first, we thought it was hearing loss. But the tests came back normal,” she said. “That’s when we knew this was something deeper.”
Another father said his son still couldn’t speak at age four and required specialised attention at school. “He’s a sweet boy but it’s like he lives in his own world,” he shared. “We pay ₦100,000 per month just so someone in class can keep an eye on him.”
GTCO’s 15-year commitment: From awareness to action
In a country with few public services for neurodevelopmental disorders, Guaranty Trust Holding Company (GTCO) has carved a significant niche through its Autism Conference and follow-up clinics, held annually since 2009.
At this year’s edition, the Muson Centre in Lagos was filled with more than just presentations. After the conference, GTCO hosted a free multi-day consultation event with local and international specialists. Many families, for the first time in their lives, sat face-to-face with behavioural analysts, clinical psychiatrists, occupational therapists, and speech-language experts free of charge.
The conference offered lectures, direction, free screenings, and peer support, forming a rare bridge between professional care and parental reality. For Shalape Azizi, the founder of Cradle Lounge Special Needs Initiative, a non-governmental organisation, it was a full-circle moment. “Eight years ago, I came in as a desperate parent. I left that day with a purpose,” she said. “Now I return to help others walk the same path.”
She added, “When I got the diagnosis for my son, no one told me what to do next. No therapy list. No community support. It was at this conference that I began to heal.”
“Autism is not just a family affair, it’s everybody’s business,” said Mashudat Bello-Mojeed, a leading Nigerian child and adolescent psychiatrist and one of the speakers at the conference. “Too many people think an autism diagnosis is a death sentence, but it’s not.”
Bello-Mojeed also described the structural barriers that parents face, including few trained therapists, inaccessible hospitals, stigma, and widespread misinformation. “We’ve been raising awareness, improving education, and breaking down barriers of stigma,” she said. “But now, it’s time to take action.”
She emphasised that awareness must be translated into tangible actions that make a difference in the lives of individuals with autism.
She pointed out that even well-meaning schools often lack basic accommodations. “When a child with autism throws a tantrum, it’s not a moral failure. It’s neurological. We need to educate our society to understand that.”
“We sold everything just to hear him say ‘I’m hungry’”.
The emotional and financial cost of raising a child on the spectrum in Nigeria can be staggering. Several parents at the GTCO clinic admitted that they had emptied savings, sold land, borrowed from friends, and fallen into debt just to cover therapy costs, often ₦150,000 to ₦200,000 per child per month, not including special education fees, dietary supplements, or caregiver salaries.
One mother described using up her emergency savings and taking on multiple jobs to afford her son’s speech therapy. “We paid everything we could just for him to learn to say tea or ‘Capri-Sonne’ when he wanted juice.”
Another parent said her son only eats three foods and has to be fed manually. “He literally doesn’t eat a lot of things. In fact, when he sees an egg in his food, he’s just going to tell you, “Mummy, egg, no that is I’m not eating. And then he’s inspecting the food to be sure that you’re not hiding fish or meat inside.”
“So, most times for me to give him protein, I’m going to have to buy chicken, blend it, and then cook it inside the food so that he won’t see any crumbs in it, else he won’t eat it,” she continued. “In fact, sometimes when he tastes it, he’s just going to tell you, ‘No, he prefers to be hungry than to eat a lot of things.”
And yet, despite the cost, many parents remain hopeful. They document their children’s progress in small victories, eye contact, new words, and peaceful play with siblings. “We don’t need perfection,” one father said. “We just want to know our child is seen, supported, and safe.”
The stigma that still silences
In addition to cost, stigma remains one of the most crushing barriers families face. Parents recalled being told by teachers, doctors, even pastors, that their child’s behaviour was due to poor parenting or demonic influence. One mother said her own relatives accused her of being cursed. “It’s why I stopped sharing photos of my son, people judge what they don’t understand.”
At one private school, a mother discovered that her son had been left in a soaked diaper all day, unfed and ignored. “They said they didn’t know how to handle him,” she said. “They didn’t even try.”
However, experts like Bernadette Kilo, an Atlanta-based autism consultant and mother of three autistic children, aged 15, 12, and 10, urged society to move beyond judgment.
“Children with autism are not broken and don’t need to be fixed. They need to be accepted and loved,” she said.
“Punishment only adds trauma. Instead, what we need is understanding and structure.”
From Survival to Strategy: What Needs to Happen Now
As the final sessions of the conference and the clinical consultation drew to a close, the message from experts and advocates became increasingly urgent. First and foremost, they emphasised the pressing need for policy reforms that would make inclusive education and therapy services not a privilege but a national mandate.
In addition to legislative changes, they called for government-funded subsidies, which could ease the financial burden of families seeking special education and developmental care for their children.
Alongside financial support, the experts underscored the importance of establishing accessible therapy centers within every local government area, ensuring that no family is left stranded due to distance or cost. Equally essential, they noted, is specialised teacher training empowering educators to identify early signs of autism and provide classroom support tailored to neurodivergent learners.
Finally, and perhaps most critically, there was a resounding call to create employment hubs designed explicitly for autistic youth and adults, offering not just vocational assessments but also the job placements and support structures they need to thrive. In essence, what began as a conversation on awareness is now evolving into a blueprint for national inclusion.
Georgiana Kojima, a behaviour analyst, emphasised that “integration starts with education, not just of children, but of society.” “Parents must become advocates but the system must also meet them halfway,” she said. “Support groups, inclusive curricula, and national awareness campaigns must be scaled immediately.”
GTCO’s annual autism platform may not solve all the problems but for one weekend every year, it gives families something they rarely receive: recognition, resources, and real hope.
