Abuja, Nigeria – Joseph was about to turn two when his mother noticed that he liked to keep to himself. He would not associate with other children, was not maintaining eye contact, had started walking on his toes, and mumbling, which she found particularly strange because a child’s speech should improve with time. All the signs called to mind something she had read in passing in a magazine several years earlier. So she went on Google to research his symptoms and possible diagnosis. Everything she read confirmed her suspicions: autism. “I just knew,” says Aisha John-Mark, gazing at the wall in front of her as she recalls that day. “And I knew I had to seek help.”
She returned to Google for speech therapists in Abuja and it led her to a website about behavioural disabilities, how to care for children with special needs, and the importance of early diagnosis. Aisha contacted the writer, Lola Aneke, a special needs educator and founder of the Comprehensive Autism and related Disabilities Education and Training (CADET) Academy. The school, located in Asokoro, a highbrow area in Abuja, provides early intervention and educational services for children with Attention Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), Asperger’s syndrome, Down’s syndrome, and other developmental disabilities.
Following Lola’s advice, Aisha took her son to the school. “The child stays there like he’s part of the system and they keep assessing him,” she explains. After about a week-long assessment, the therapist at the academy concluded that Joseph had a speech disorder. Not only does the school provide educational support for children with special needs, they also work with therapists to help with behavioural modification, speech therapy, social skills and language skills. So to continue Joseph’s education and treatment, Aisha enrolled him at CADET. That is when they noticed he was exhibiting other behaviours: he could not hold a pencil, he would get really uncomfortable when a place got noisy. Another assessment confirmed that he had autism.
Research on ASD in Nigeria, and in Africa in general, is sparse. There was a time when many assumed that autism was only found in developed countries. However, recent research from Nigeria showed that 54 of the observed sample of 2,320 children had autism, and the condition is relatively more common among boys (45 males and 9 females were identified with autism in the study). Globally, it is estimated that about 1 in 160 children has autism.
Aisha and her son live in a small outbuilding in Suncity Estate, a middle class area in Abuja. There is a bed on which she sits and a chair she offers me. Joseph sits in front of the TV, although it is turned off because there is no power. Soon he stands and starts pacing about, muttering something. He wraps his hands around his mother, giggling. Then he comes to me, laughing, holding me.
“Joe, stop that,” his mother says, and he smiles and continues hopping about the room. “He can do that all day. He never gets tired. It’s me who gets tired,” she explains.
After Joseph was diagnosed with autism, Aisha’s husband blamed her. Surely, she must have done something when she was pregnant to cause it. He said the boy was not going to improve being surrounded by children like him, so he withdrew him from CADET and enrolled him in a mainstream school. “His teachers were always calling to complain that he wasn’t getting along,” Aisha says. Joseph was later withdrawn and re-enrolled at the academy.
One day, Joseph’s father went to CADET and told the management that he did not want to be bothered about his child’s school fees and welfare. After several other challenges, Aisha left her now ex-husband and has since been the sole provider for Joseph. “I try to stay strong because of my son,” she says.
Joseph is now eight years old and “knows how to spell”, his mother says with a smile and a glint in her eyes. He sits back in front of the TV, still turned off. Then he stands and takes his mum’s phone and opens YouTube. “His speech is not what you’d expect [of] an eight-year-old,” she says, rubbing his head. He giggles. “His sentences are short.” But when he wants something, he can say, “Mummy I’m hungry. Mummy I want internet. Mummy let’s go,” she says. Oftentimes, though, he utters single words: “Chicken”, “Car”, “School”. “That’s how his speech has been. It’s been slow but tremendous progress,” Aisha says.
One of the goals of special needs schools is to provide adequate care and attention so that the students can eventually be integrated into mainstream schools. This is why early diagnosis is important so therapy can begin immediately. Unfortunately, diagnosis of autism is often delayed in Nigeria due to factors such as a lack of knowledge about ASD, an inadequate number of trained personnel and healthcare facilities, and financial obstacles to getting help.
Social support structures
“With Miracle, diagnosis came early,” says her mother, Biboara Yinkere. The last child of three, during her naming ceremony at a week-old, Miracle was running a temperature. At the hospital, she was diagnosed with jaundice. About two weeks later, the fever returned. Biboara adjusts her glasses and wraps her hands around her knees as though what she is about to narrate will require more composure. “The doctor checked her ears, palms,” and she watched, wondering what that had to do with Miracle’s fever. Then the doctor asked if she’d heard about Down’s syndrome.
It was not until Mimi – the name her family and friends fondly call her – was about a year old that she started playing with anyone or anything. “That was when she started opening up,” says her mother. “I didn’t enjoy that baby play with her.”
Framed photographs line the walls of their living room in Kurudu, a residential area on the outskirts of Abuja. In one, Miracle’s father is dressed in military uniform, a small photograph of her is tucked at the edge of the frame. “Her father is her best friend.” Now 10, Miracle calls her older sister “honey” because she cannot pronounce her name – Abigail – properly. “They are very close, and we’re trying to teach her how to pronounce my name and her sister’s name correctly,” Boboara says.
In 2015, Biboara founded the Engraced Ones, a support group for parents with special needs children. With about 35 regular members across the country, they provide succour for each other and share resources on how to better care for their children and create awareness about developmental disorders.
Four years later, Biboara opened School of Grace in what was once a dilapidated building in Jikoyi, a community close to Kurudu. She started the vocational school for children with learning disabilities after noticing there were no schools for special education in the area. She knew a lady at her church with a child on the autism spectrum, and began looking out for special parents before she found more. Some had already given up on their children; others did not know what to do.
Biboara and her team renovated the building and started the school, admitting mostly underprivileged children. Some are sponsored by members and friends of the group while a few are paid pupils. The school currently has 10 students. Besides classroom activities, children are taught practical skills such as gardening, how to make soap and juice. Miracle, who was already in CADET before School of Grace was founded, stayed there as her parents thought changing schools would disrupt her learning process.
Before Miracle turned four, she had been rejected from several mainstream schools. Eventually, she was enrolled into one but left when she was seven because she could not cope. She had a general understanding of the school environment, but when it came to actual subjects like numeracy and literacy, she did not find her place.
Then she started alternating between CADET and a mainstream school. Shortly after, she joined CADET full-time and started improving. She could recognise the alphabet and started writing. “We saw that learning was taking place,” her mother says. “We could measure her progress.”
CADET Academy: Intensive special education
On the cream walls of the CADET Academy building, there are colourful paintings of trees, posters and words of affirmation:
“You are capable of doing amazing things!”
“Learning is a journey”
“You are amazing”
“LEARN. EXPLORE. DISCOVER. PLAY.”
Founded in 2013 and located in Asokoro, it admits children with different forms of learning disabilities. Dew Drops Community Centre, the non-profit arm of the academy, caters for low-income families through donations from individuals and corporate bodies.
In the classrooms, different teaching methods are tailored to individual children to ensure each pupil receives adequate attention. Joseph, for instance, is unable to properly hold a pencil, but he knows how to type on the computer. In another class, a teacher explains numbers and the alphabet to a boy. He holds his hand as the child writes 1, 2, 3 on the board; then he retrieves some cards with numbers written on them and tells the boy to identify each one as he dictates. For another child, a teacher uses a tray with salt, watching as the boy traces his finger on it; then she holds his hand to help him write more legibly. For another, the boy uses a pencil to write in a book as his teacher calls out the letters of the alphabet and then holds his hand to steady his writing. A girl uses a phone to play an educational game that displays objects and their names.
A boy comes up behind one of the teachers and wraps his arms around her. “Personal space, please,” she urges gently, and the child moves back a little. Beyond learning how to write, the children are also taught social interaction. They learn to say please, thank you, good morning, may I? “Learning is holistic for us,” says Lola, CADET’s founder. “It’s not just ABC and 123.”
When recruiting teachers, she looks out for qualified people with a heart for children, she says. This is followed by necessary medical screenings. “We’re working with children; we have to be careful.” The person comes in, receives training and starts observing the pupils in their classrooms. After the third month, they are assigned to two students. Because of their individualised model, ideally, a class of 12 students has four main teachers, four assistants and four volunteers.
The academy also trains volunteers and parents to adequately care for children in their home environment. They can observe their children in school and become more equipped to support them at home. “Teaching a special needs child is different from how you teach neurotypical children,” says Aisha. “Learning doesn’t stop in school.”
The teachers print out monthly schedules and goals for each child so that parents can monitor their progress. This openness about their method and the child’s welfare is one of the things Biboara likes about CADET. “They are very open with their process.”
In the past seven years, more than 100 students have passed through the academy and they have mainstreamed about 40 of them. Following close assessment, the school informs the parents when the child is ready to be enrolled in a mainstream school. They will recommend inclusive schools fit for the child and work with them to integrate.
Lola has always been passionate about children. As a teacher, she worked in classrooms and loved to volunteer. In one class, she noticed a child who was always sitting alone. No one was paying him any attention, not even the teacher. Long after she left, Lola kept thinking about the boy, about what could be going on with him, about the many children like him, and what the future might hold for them. She has since received a practicing license and a Master of Art in Teaching (MAT) Special Education from Meredith College, North Carolina, United States.
After training, she returned to Nigeria because this was where she felt her expertise was most needed. She sent out CVs to schools in Abuja, but there was no response, no job. Then she started a blog about developmental disabilities. One parent of a child with autism reached out, then another. She went to their homes to teach. As her client base grew, the homeschooling model became unsustainable. So she started CADET. “It wasn’t easy but I knew I needed to start. Special education is a service. You always have to ask, ‘what does this child need?’”
“If there’s one thing the kids love,” she says as she shows me around the building, “it’s the trampoline.” It’s break time and they are outside jumping and laughing in it. Some are playing football with their teachers. Sometimes, they participate in extracurricular activities such as swimming and art classes. Lola is considering hiring a taekwondo teacher, but that was before COVID-19 changed the order of the world. For children with special needs, virtual classes posed several challenges. “Because of the pandemic I was afraid Joe (Joseph) would retrogress,” Aisha says.
Learning in the time of coronavirus
About a week after the lockdown was announced in March last year, CADET began virtual lessons. The teachers were also trained to adopt a hybrid of homeschooling and virtual classes and, in October, months after the lockdown had been eased, they started combining the two models. But there would be challenges, especially around holding the pupils’ attention. While the teacher does their part on one end of the screen, someone – a parent, sibling – must also be with the child to facilitate the process.
Joseph participated in the virtual classes. When the hybrid model started, Aisha was unable to admit a home tutor due to financial constraints and her small living space; she thought it would be uncomfortable for everyone. So she doubled as both parent and educator, while also working in the same space and completing a professional training course. “It was a lot,” she says. “It was telling on my health.” Aisha called her mother in Kogi state for help, and she came and took Joseph with her for two months.
Last October, Miracle left CADET Academy for Green Wood Isle Academy, a mainstream school in Karshi, Nasarawa, the neighbouring state to Abuja. The first time I joined Miracle’s online class, the topic was numeracy. There was a whiteboard on which she writes, as her teacher, on the other end of the virtual space, tells her what to do. The second time, however, Miracle is unable to hear her teacher. Lack of internet connectivity is one of the challenges of remote learning in Nigeria.
During the lockdown, they got a teacher to homeschool. “That period we were all at home was one of her best periods,” says Biboara with a smile. “She learnt really fast. Before the end of May she had learnt the alphabet.”
When offices opened and her siblings resumed school, Miracle had a difficult time adjusting. She was already used to their presence and their encouragement during classes at home. One day, she brought out her school uniform and said “school”. And her parents knew she wanted to go back to class.
Green Wood Isle Academy is one of the few inclusive schools in Nasarawa and Abuja. It is break time and some of the children are out playing. In Miracle’s Year 2 class, everyone is quietly seated, eating. I approach Miracle and she smiles, then points, shyly, to the girl sitting beside her. “Your friend?” I ask, and she nods.
When Miracle first joined the school, all was well. “But soon,” her class teacher, Naanchim Barau says, “her classmates started to notice that there was something different about her.” With Down’s syndrome, she was unable to play and communicate like everyone else. Sometimes, after lunch – as I would see a moment later – she would pick up the broom and obsessively start sweeping. “And there’s nothing you can say to stop her,” says her teacher. She taught her students that everyone is equal, and that they needed to be patient while speaking to Miracle. “No bullying,” she would say. “Do not shout at anybody.” And soon enough, the children understood and started learning to come into Miracle’s world.
“We teach the same thing but in a simpler way so they can understand,” Naanchim says. Once every week, Miracle’s teacher takes her to the information and communications technology (ICT) section of the school where an educator from CADET teaches her. It is part of the process of integrating her into the regular school system. However, at some point, she herself started to notice that something was different and became uncomfortable. Why was she the only one being taken out of the classroom to be taught by another teacher? Her parents are exploring another arrangement where the teacher comes to the house.
Inclusive education and the government
Nigeria is the most populous country in sub-Saharan Africa. Children four years and under make up the largest age group in the population while those aged 5 to 9 are the second-largest group.
Between the way things are, and the way Nigerians hope things will be, the government has a pivotal role to play. In the National Policy on Education 6th Edition (2013), section 7 focuses on special needs education. It says that “persons with special needs shall be provided with inclusive education services in schools which normal persons attend.” It also says that special persons who cannot benefit from inclusive education “shall remain in special schools, receiving the same quality of education in the other settings”.
“Do you feel supported?” I ask Biboara. “Yes,” she says, “by friends and family, but not by the government.” The Nigerian government does not offer any respite for special needs children or their caregivers.
During the 2020 lockdown, the Engraced Ones wrote an open letter to the minister of education, Mallam Adamu Adamu. “Families had over the years grappled with the challenges of access, quality and relevance of the existing curriculum of mainstream schools to their children,” they wrote. “In addition to these worries, at the moment, we are concerned about the effects the closure of schools may have on our children…” They went on to express their concerns about the possibility of children regressing in school, of parents not being able to afford the fees charged by private special needs educators during the pandemic, of the importance of parents getting trained to meet the needs of their children at home, and so on.
They copied the Ministry of Communication and Ministry of Women Affairs and Social Development in the letter, but no substantial steps were taken. The only response they received from the Ministry of Education was that they should take advantage of the TV programmes that the children might find helpful. Al Jazeera reached out to the Ministry of Education for comment on this story but received no response.
Biboara notes that to make learning more accessible, pupils need access to more qualified teachers, resources and assistive technology tools which the government can provide. “Text-to-speech tools, recreation tools… I don’t even think there’s a proper understanding of what the situation is.”
As a result of different factors and barriers, children with disabilities are more likely to miss out on school compared to other children. “About 95% of children with disabilities in developing countries are out of school and 90% of them may never gain access to basic education in their lifetime,” according to JONAPWD, an organisation of persons with disability in Nigeria.
Aisha says there is a need to include other types of disabilities in the National Policy on Education and implement the policies. “How many people talk about dyslexia? Or Asperger’s syndrome?”
“As far as I’m concerned, we’re not ready,” says Lola. “The government needs to know what they want to do. They don’t want people to know what’s obtainable.” She suggests that special education should be included in teachers’ training in Nigeria. “Let’s incorporate this in our system. You can’t bring in people who don’t understand.”
There have been conversations across the world about inclusion. “Inclusive education is the global best educational practice and standard to ensure that no child is out of school irrespective of their disabilities, gender and other social status. This is why Goal 4 of the SDGs comprehensively provides achievable targets for inclusive education,” according to JONAPWD.
There are different schools of thought on what inclusion in special education means. Aisha believes it is ensuring no one is left behind irrespective of their disability. “Let every child be carried along. Why do we have to segregate people? That’s still stigmatisation.”
Lola observes that the most important thing is to provide education for every child, regardless of where that learning takes place. “It doesn’t have to be in school environment. Education should be tailored for each child.”
Parenting a child with special needs
Caregiving is not without health, social and financial implications. With inflation and the economic effect of COVID-19, the national poverty rate is “forecast to jump from 40.1% in 2019 to 45.2% in 2022, implying that 100.9 million Nigerians will be living in poverty by 2022”, according to the World Bank.
Aisha supports herself and Joseph from the money she earns as an editor. Her bosses have also been understanding, allowing her to work from home as much as possible. “Anything that has to do with special needs is expensive,” she says. “It’s difficult for every parent. But if you have the money maybe you can manoeuvre some things.” She had the opportunity of getting a better-paid job but she could not take it because it would have required her to travel a lot. “You don’t find special needs schools everywhere,” she says.
“Being a single mother with a child with special needs is the hardest job on the planet,” Aisha continues. “It’s not easy. I’m going to the market, I’m going with him. I’m going to the salon, I’m going with him. And I have to hold him tight. You can’t take your eyes off him for more than a second otherwise he’ll just run off. He sees the road as his playground. He doesn’t have a sense of danger. Sometimes I shout,” she pauses, holding back tears. She opens her mouth and tries to talk, but no words come out. She shakes her head and looks away.
According to a 2005 study, 10 percent of the world’s population, “or approximately 600 million people, are living with a sensory, physical or intellectual disability. When the family members of people with disabilities are taken into account, disability affects up to 25% of the world’s population.
Aisha must also protect her son from negative comments. “He gets stigmatised,” she says. “People just say things. And you can’t fight with everyone. It’s disheartening,” she pauses for a moment, as though in contemplation. “And… it’s because they lack awareness. We live in a society where people are so judgmental.”
There was a time when everything was taking a toll on her health and she started collapsing at intervals. “I don’t talk about this part because people won’t understand.”
It has been two hours since I arrived and Joseph is still pacing around the room, mumbling, tickling his mum.
“They (the children) need therapy and a lot of love,” she says. “You need patience.”