- How children with autism suffer total neglect in Nigeria
By Ola Kehinde-Balogun
OMOJOLA Ogunleye, a Nigerian born in the United Kingdom, lives in a lonely world. At five years, he is yet to utter a meaningful word. What he does, at times, is to make some meaningless muttering. Children of his age are able to play together, while some can slightly read or write. But for the handsome looking boy, playing alone is his game, even as he rarely maintains an eye contact.
His parents, Mr. and Mrs. Ogunleye noted: “He still uses diapers anytime we are on an outing because he may mess himself up, since he is not be able to express himself.”
The parents, especially the mother, often wonders if they have not failed in their primary duty of parenting. The Ogunleye family has lived for eight years in the United Kingdom, where they gave birth to Omojola. That was where they discovered he was autistic, an ailment that was new to the family. In an attempt to douse the rising tension in the family over the health challenge of their first baby, most friends and family members had suggested to the Ogunleyes to relocate to Nigeria. They reasoned that the communal way of living that is prevalent in Africa could help boost the poor boy’s vocal ability. African alternative medicines could also be sought, they thought. The Ogunleyes succumbed to the advice. They soon relocated to Nigeria to seek every means to attend to their boy’s challenge. But with that single move, they made the greatest error of their lives, Mr. Ogunleye affirmed.
Discrimination in Nigeria
The expectation that the world’s largest black nation’s communal way of living might help straighten Omojola’s speech therapy hit the rocks as soon as the boy set his feet on Nigerian soil. Rather than get love in most places the boy turned to, the parents said what they got was discontent, as the boy was made to face total discrimination in many areas. It was then getting clearer to them that their expected happy moments over their five-year-old child would not be found in the country.
But they refused to throw in the towel. They pushed harder. That the child was giving them extra stress was not the main discomfort of the Ogunleyes; the parents said. According to them, the way the neighbours, teachers and the Nigerian society neglected and ostracised the poor child kept giving the family sleepless nights, Mr. Ogunleye alleged.
A scenario that the Ogunleyes said they would not forget in a hurry happened one evening, as they were taking a stroll. Mr. Ogunleye said: “Our neighbour was passing by us, and jovially I played with her little daughter by calling her my ‘son’s wife’, as the Yoruba normally joke. The woman grumbled and said: ‘God forbid! My daughter will never marry someone like this.’ I almost broke down in tears on the road, wondering why such a blatant rejection could be so arrogantly displayed against an innocent child, just because of a little challenge. I tell you, if this were to be in the UK, I could sue her for discriminating against my child.”
Mr. Ogunleye alleged that Omojola was also assaulted and abused by his teacher, which made them withdraw him from school. His words: “Certain kids need nothing less than love. But rather than get such love, it is hatred or displeasure that they get in my home country. I enrolled him in a school, where they could not even teach him anything, because there are no professionals in the school or anywhere around. One day, I was shocked, as I just dashed into my boy’s school and saw that he was being harshly beaten with long canes. The boy, who could not talk, was running around the school compound and screaming, while the teacher pursued him. Instantly, I was shivering and I was almost going to collapse, seeing my loved child in such a hapless and helpless situation. I wondered and asked what offence he had committed. They said he took some biscuits from a mate. Imagine! A mere N5 biscuit! At this point, I knew I had overrated the Nigerian system. And I felt terribly bad and guilty for bringing him to Nigeria. Because in the UK, no teacher would dare beat any child at all, let alone a special child.”
The middle-aged father noted that the Nigerian society often apportioned blames to parents whose children have one ailment or another for failing to bring up the child in a certain way.
“Our community mocks and looks at these kids with disdain. Some mothers don’t even allow their kids play or mix with children with disability. It is that bad,” Mrs. Ogunleye sombrely stated.
Many parents in Nigeria have narrated how they could not bear the sight of seeing their autistic children being mocked. Thus, they hide such children in the room.
Recently, Mrs. Funmilayo Adisa, who lived in Surulere area of Lagos, narrated her ordeal. Her six-year-old son was suffering from cerebral palsy, a paralytic ailment caused by brain damage during childbirth. Her husband, Mr. Adisa, went out one night with the claim that he wanted to buy a bottle of drink. He never returned home. After all efforts to contact the missing man proved abortive, Mrs. Adisa got a call few days later from the same husband, who by then had absconded to South Africa. The husband apologised and told his wife that the marriage was over. He regretted he could no longer continue to bear the shame of his sick child, as neighbours, church members and family members were perpetually taunting him.
What autism means
An Ekiti State-based medical doctor, Dr. Dayo Oloidi, explained that many people in less developed countries were not quite aware of the challenge of autism. People with such challenges are often kept at arm’s length, hence, they do not have special care, he added. He said Autism Spectrum Disorder (ASD) is a condition that affects social interaction, communication, interests and behaviour. In children with ASD, the symptoms are present before three years of age, although a diagnosis can sometimes be made after the age of three, he added.
He said medical research showed that an estimate of about one in every 88 people in the world has ASD, with more boys being affected than girls. He also pointed out that there was no cure for ASD. But speech and language therapy, occupational therapy and educational support, alongside other early interventions, are needed to help children and parents, he said.
“Children with ASD are meant to get medical help and support to live a normal life. In early infancy, some children with ASD do not babble or use other vocal sounds. Older children have problems using non-verbal behaviours to interact with others. For example, they have difficulty with eye contact, facial expressions, body language and gestures. They may give brief or no eye contact and often ignore familiar or unfamiliar is not a form of disability that requires the use of paracetamol or some sort of painkiller; it is an ailment that requires full dosage of showing love to the patients. The child needs to attend a special school, attend regular speech and language therapy sessions, and the parents have a lot to do to help the child grow up,” Oloidi stated.
‘Some doctors don’t know what autism means’
The Ogunleyes said they were blamed even by medical practitioners in renowned teaching hospitals for bringing their autistic child from the UK to Nigeria where there were inadequate medical facilities. He said: “Whenever we went for speech therapy at one of the country’s teaching hospitals, the doctors that attended to us blamed us for taking Omojola away from a society where he could get the best medical care and attention. The first question most medical doctors often asked was, ‘why did you bring the boy to Nigeria to suffer?’ They said that was why many professionals preferred to practise their trade outside the country.”
Mr Ogunleye informed that some medical practitioners hadn’t even heard the word autism before. “I was shocked as this particular doctor kept asking me what I meant by autism. He wanted to know how the boy behaved whenever the disease came on him. At that point, I quietly walked away,” he added.
The Ogunleyes said they were advised to seek spiritual solutions to the challenge. They therefore consulted pastors and other spiritual healers in many churches for possible solutions. There, Mr. Ogunleye said, they discovered another shock.
His words: “Most spiritualists were claiming that children with speech delay or autism were evil and that they would need to be thoroughly beaten to confess. Of course, I never surrendered my child to such molestation. Meanwhile, at a white garment church around Sango Ota, we saw one autistic boy being beaten heavily under the umbrella of conducting a spiritual deliverance to heal him.
“In fact, there was a place I visited, and I was told my mother-in-law was behind our boy’s predicament. Same way, my wife had also been told that my own mother too was the cause of his inability to speak. You could see the contradiction and ignorance,” Mr. Ogunleyes added.
NGOs milking the gullible
Mr. Ogunleye affirmed that some individuals now float so-called non-governmental organisations (NGOs) in order to make some money from the predicament of others. He alleged that such NGOs had no understanding of the ailment, adding that they only exist to raise funds from international bodies and corporate entities in Nigeria. These NGOs sometimes distribute noodles and biscuits for disabled children, which are a far cry from the love, care and special attention that they need, he added.
But there are instances where there are genuine concerns for children living with autism. Recently, a new generation bank, along with some NGOs, organised a walking and cycling campaign in Lagos to raise awareness on autism.
Mr. Ogunleye commended the move. Then he added: “It is just an insult that in 2016, a country that is as big as Nigeria is still talking about awareness on autism, when other countries with smaller economy have built schools and career centres for autistic children.”
Silence from the govt
While in the country, Omojola’s father said he searched all over Alimosho Local Government and Ojokoro Local Council Development Council Area, where the family resided in Lagos, for any special school for his child. But he found none.
“There is no single health support facility for autistic, down syndrome or speech delay children. As big as Lagos State is, the government has no single special school for autistic children. The government of Nigeria needs to wake up and support these individuals. The country might have lost the next professor of mathematics to the streets because of lack of help. These individuals are gifted. They are one of us and the discrimination should stop.”
Autism in advanced democracies
In developed countries, autistic children are known as special children and are made to feel special in every way, research has shown. Findings by the reporter revealed that many advanced democracies ensure that such children are accorded same respect given to other children. For example, the government of Canada, through the Ministry of Community and Social Services, has in place a programme called Special Services at Home Program (SSAH). Through the programme, government financially assists families of children with physical or developmental disabilities. The funds are given directly to the affected family to hire a support worker to help the child in the area of personal development and growth. In Norway, the government has vocational schools for autistic people where they can learn skills and then go on to have a career. The government of the State of Wisconsin in the United States provides $500 per year in support of medical treatments for any child with autism. Funds from the grant go directly to the medical provider, not to the family.
Similarly in electoral campaigns, discussions on autism among other developmental challenges have always occurred in manifestoes of western world politicians. For instance, the New Hampshire Governor, Margaret Hassan, who is running for the U.S. Senate, has always been very vocal on the topic of autism in her campaign. In the 2015 UK election, the Labour Party, in its manifesto, made provisions for health and social care. They claim it would be vital that there is mandatory training in autism in initial teacher training to give access to autism experts as teachers in schools.
Back to the UK
Mr. and Mrs. Ogunleye have since returned to the UK. Mr. Ogunleye, who spoke with the reporter from that country, explained how much he regretted bringing the child to Nigeria for a solution. He said the family was glad to have gone back with the child for a better care from an advanced society.
With renewed hope beaming in his voice, he reaffirmed that being autistic does not mean a child is demented or that the end of the child’s happiness has come. He said such a child has a challenge, but that he would later outgrow the challenge in life if exposed to the right channels and opportunities. “This is the reason I’m talking about my experience to give hope to others, and for government to possibly rise up to the challenge,” he said.
Great people that lived with autism
Research shows that there are some icons that had lived with autism and had become great later in life. Experts claim that though autistic children are challenged, many of them have become a blessing to humanity.
Record shows that Albert Einstein, the German-born theoretical physicist, had displayed autistic symptoms in his early life. He had a challenge with social interactions while growing up and also experienced difficulties in learning in school. It was recorded that this angered one of his teachers who wrote him off at a point. But Einstein grew up to become one of the most celebrated icons in the academic world. He developed the general theory of relativity, one of the two pillars of modern physics. His work is also known for its influence on the philosophy of science.
Isaac Newton had suffered from autistic symptoms, and later became a renowned mathematician and physicist that English people are always proud of. A Belgian, Luca Brecel, an autistic patient, also rose from it and became a professional snooker player, while Franz Kafka, a Czech, who was also autistic, became a fantastic writer.