COVID worsens problems of Nigerian autistic children, and their parents
LYING on a couch in a dimly lit sitting room, Kanyeyichukwu Okeke, 10, whose name is shortened as Kanye stares blankly at the television screen, barely joining in the giggles and shrieks of his siblings as they watched a cartoon channel together.
His face is expressionless, so it is difficult to tell whether his attention is on the cartoon characters on the television screen, or on the paintings on the wall.
His countenance is not unusual, he often prefers to be alone, and rarely engages in conversation with people including his siblings and parents, according to his mother, Sylvia Okeke.
“He does not talk to me unless he wants something. When he comes back from school and I try to enquire about his day at school. He looks past me and walks away without a response, though he can talk, he always chooses not to talk,” she said.
Kanye wasn’t always like this, he was playful as a baby until he clocked two years when Sylvia noticed he would babble incoherently, refuse to play with toys and stare into blank space without blinking for a long time.
Months later, after repeated visits to different hospitals, diagnosis revealed that Kanye had autism. This revelation shocked his parents even though they were unsure what it meant.
“We didn’t know any child on the autism spectrum, so we didn’t know what to expect from him. We realised that we spent more time teaching him how to eat, use the toilet by himself and other things in order for him to maintain his hygiene without external help which was not a problem for his siblings,” she said.
Sylvia struggled between caring for Kanye who needs greater attention and her other children. The tasks is daunting, but she wanted Kanye to be self-sufficient without depending on others.
At age six, Kanye has however shown keen interest in painting. He would draw on any available paper or paint it, using pencils. This interest prompted his parents to hire a personal art teacher to coach him.
His daily routine has been carefully managed and choreographed to revolve around his school classes, art class, and his basketball lessons to suit his autistic mind.
After several failed school placements, his parents settled for Auduvie International School in Maitama Abuja, a privately owned regular school that runs a department that caters to children with special needs.
Annual fee at the new school is above a million naira which will take a parent who earns a minimum wage of N30,000 at least 4 years and 8 months of savings to be able to afford Kanye’s school fee.
This exorbitant fee puts pressure even on the rich parents who raise more than child.
Section 17 of the 2018 Nigeria Discrimination against Persons with Disability Act makes it mandatory for the Federal Government to provide education for people with developmental disabilities to secondary school level free of charge, but the law is hardly enforced as the responsibility still lies on parents or guardians.
In March, the COVID-19 pandemic struck Kanye’s world, disrupting his schedule and setting him back on his progress levels in interacting with people as the lockdown kept him confined indoors for the first time in years.
It took over two weeks for Kanye to adjust to a new routine of making the computer screen a part of his learning process as his school migrated from physical to virtual classes, including his speech therapy sessions.
Five months after the schools were closed, the Federal Government is yet to announce the re-opening of schools since March 20.
Despite making provision for online learning for typical kids on the Ministry of Education’s website, children with developmental disabilities educational needs were not prioritised in the online classes.
Sylvia told The ICIR that Kanye’s learning rate from online teaching could not be compared to the physical presence of a teacher but if learning was taking place at all it was better than nothing.
“It is now a new normal for us. You can’t compare an online class to a physical class because they are a completely different environment, especially for autistic children. It is better than nothing at least he is learning,” she said.
According to a study published in the Journal of Clinical Sciences, Kanye is amongst the over 600,000 autistic children in Nigeria, with unfettered access to online learning and therapy paid for, through out-of-pocket spendings by his parents during the COVID-19 pandemic.
For thousands of other children in Nigeria with autism who do not have access to privately funded special education unlike Kanye, they have remained stuck at home without any form of academic learning until schools are re-opened.
A Handicapped System
Another case of autism is Mufid Lawal, a 13-year-old boy. But he is adept at playing with computers or electronic gadgets. His eyes brighten, at the sight of an iPad or phone as he loves exploring the software applications on phones and computers.
He enjoys the company of his parents and siblings, but when he gets agitated, he would scream and slap himself and his siblings within reach, or he bites himself with his teeth.
His father Akeem Lawal describes him as an electronics freak and believes Mufid could be an excellent computer programmer though he has not been able to find the right school where he will be taught how to code.
Since the outset of the pandemic in March, Mufid who attends an Abuja-based privately-owned special school, Zamarr Institute has not received any form of academic learning from the classroom online which he said the school offered at a fee.
Akeem said the effect of the school closure has made Mufid lose learning time, but he believes it would be regained when schools reopen due to Mufid’s retentive memory.
“Its been challenging because before the pandemic Mufid had a schedule on his school timetable for everyday activity but since schools were closed, he has been engaged with watching TV programmes or playing except when I’m home to teach him.
“He has a retentive memory and I know when school re-opens he will pick up from where they left off,” he said.
The World Bank Education and COVID-19, 2020 report published in June, projects that school closure induced by COVID-19 which lasts for five months could result in a reduction of $872 in yearly earnings for each student in primary and secondary schools.
It also estimates a loss of $10 trillion in earnings overtime for the current generation of students who will lose over five months as their countries will be driven off-track to achieving their Learning Poverty goals.
Akeem told The ICIR that Mufid had improved over the years from when he got admitted at Zamarr Institute which he describes as “impressive” but hopes for skills imparting educational model that will make Mufid self-reliant in the future.
“I don’t want Mufid to be relying on other people later in life I want him to have a skill that will make him self reliant. I heard of someone who could teach coding but when he told me to pay N300,000 monthly for him to teach Mufid, I backed out because it was quite expensive,” he said.
Akeem said he spent N1,500,000 initially on Mufid’s yearly school fees which strains his financial resources, making him withdraw Mufid from school for three months.
“After I stopped Mufid from attending school, the management reached out to me to ask why and when I told them the reason, we reached a compromise and negotiated on an affordable payment plan,” he said.
Though Akeem is unsatisfied about Mufid’s learning pace with online classes when asked about the effects of school closure.
“Mufid knows the time for all the programmes on satellite TV so if a programme is going on and his class clashes with the programme then he will always be distracted no matter what you do if his mind is not there he won’t be able to learn. This is a major issue I have with the online class,” he said.
Evidence from research by Gnanathusharan Rajendran, professor of psychology at Heriot-Watt University in the United Kingdom, UK, explains that individuals with autism spectrum disorders unusually have an afﬁnity for Information and Communication Technology (ICT), making it an ideally suited area for those on the spectrum.
The study suggests that since autistic children have a more dominant left side of the brain, they will have a high tendency at excelling in jobs that require precision and repetition which includes updating databases, coding, and analytics.
Mufid’s computer skill set is still in doubt, despite attending a special needs school. His expertise is yet to be harnessed while his father seeks for a school outside the country where he believes his son will learn to develop his ICT skills.
A Familiar Road
Since the pandemic started, Muriel Atta 17, takes her classes in one of the empty rooms in their house that once served as a store which now bears semblance to a classroom setting.
Before schools were shut down across the country due to COVID-19, five days a week Miriel was always dressed up at about 7 a.m with a backpack straddling her back as she prepares to spend over 6 hours in the classroom.
The change from an actual classroom to the virtual one is a sharp contrast for Muriel who is autistic, but she is still maintaining her weekly routine.
The room is equipped with a board for writing, table and chairs as her younger sister in senior secondary school acts as Miriel’s teacher to kickstart Miriel’s day. While their parents attend to their various day jobs.
Her mother, Edith Ati – Attah, a video producer on a gospel talk show programme recalls that three months after Muriel was born she wasn’t responding to eye movements. Still, the doctors told her to bring Miriel for proper examination when she clocked one year.
“I was told when I went back a year later that she was cross-eyed, then she was referred from Gwagwalada Teaching hospital to Kaduna Eye Center, but the tests showed she didn’t have a problem with her eyes. It was at the Ahmadu Bello teaching hospital where the diagnosis showed Muriel was autistic,” she said.
Edith was distraught. The first time she was confronted with the word “Autism” was concerning her daughter’s wellbeing.
“It was a shock to me in the beginning. Sometimes I would cry, seeing I had a child I couldn’t relate with for instance when I would go to pick her up from school if her father was busy immediately she sees me she would start crying because she was close to her father.
“And I would think she doesn’t know me, but now Miriel has come out of her shell, she interacts with everyone at home, her siblings, cousins unlike in the early stage. Now, I see myself as chosen of God to take care of his special creation which is Miriel, and that makes me privileged,” she said.
Her next battle was finding a suitable school for Muriel.
“It was a miracle for Miriel to be able to attend a special school because she had been literarily rejected in two schools before she was admitted in her current school,” Edith said.
Miriel had attended a mainstream school initially until the school administration informed Edith they won’t be able to cope with her daughter.
Based on the recommendation of a friend she enrolled Miriel at a different school which, according to her, had the worst form of treatment for her daughter.
“The first day I came to drop Miriel the proprietor saw that I was with another child and asked if she was my daughter and when I said yes she told me I would have to admit her alongside Miriel because she won’t admit Miriel alone.
“I protested that my other daughter was in a different school but she succeeded in blackmailing me to enroll, saying that was her condition for admitting Miriel so I agreed,” she said.
Miriel was always locked in a different room with iron bars in the school and kept away from other pupils and whenever she came to pick her up from school her pampers were always wet with urine.
She withdrew her daughter from the school and three months later Muriel enrolled in a special needs school in Jabi, Abuja.
“After two weeks in the new school Miriel was toilet trained which was a big improvement, she could also feed herself, and the speed at which she crossed those milestones was commendable,” she said.
Edith says Muriel is at a golden stage of her life as she is always happy and trying to interact with people, and thinks it is a result of the quality of special education she has been receiving. However, she was already learning howto read and write when the school closed in March.
Muriel has lost over four months of learning time though she has access to online learning provided by the Federal Government. She continues to receive any form of education she can glean from her sister until schools are re-opened.
While the effect of the pandemic in Nigeria has forced schools closure, understanding what Muriel thinks of this is complicated. Does she miss her friends in school or is bored with being stuck at home. No one knows.
An outlook of their future
Omotoke Olowo, the founder of The Autism Awareness Foundation, TAAF, an autism advocacy group in Ogun State, told The ICIR that the challenges faced by children with developmental disabilities were overwhelming and will remain so until the Nigeria Discrimination against Persons with Disability Act is enforced.
“This is Nigeria, and we know how difficult it is to get access to health care, education even for neurotypicals (individuals without disabilities) then imagine a child with special needs it just doubles the scale of difficulty.
“Rome was not built in a day which means we will continue to speak up and pursue the interests of persons with developmental disabilities until the Nigerian Disability Act becomes sacrosanct. We really hope it happens in the nearest future,” she said.
Just like parents everywhere, Sylvia wants the best for her son, but she says the Act needs to be amended because it has vague laws if the government is serious about its implementation.
“The Disability Act has to be revisited and amended because it doesn’t take care of people on the autistic spectrum. For instance, the Act says education and health care of children with disability should be subsidised. That is a broad term without specifics.
“What are you subsidising?” She queried. “Are you subsidising therapy? Are you subsidising their books? I have been talking about that disability bill with some parents, and I feel it should be amended to accommodate the needs of children on the autistic spectrum,” she concluded.