Idowu Emmanuel, a father of seven, was excited when his wife delivered a set of twins 11 years ago. The twins, a boy and a girl, were born healthy and developing at a normal pace.
Unfortunately, the ‘excitement of the family was short-lived’ after they started noticing something unusual about the girl child four months later.
“One day, the mother gave her food and left her to me. All of a sudden, she started pouring out saliva and her eyes were turning,” Mr Emmanuel told PREMIUM TIMES.
He said that despite taking her to the hospital repeatedly for treatment, she continued convulsing on different occasions.
“One time we went back to the hospital again and after a series of tests and scans, the doctor gave us the saddest news that our child has autism,” he said.
Mr Emmanuel, a civil servant, said life has not remained the same for his family since their child was diagnosed with Autism Spectrum Disorder (ASD).
“This is a condition we have never heard of and all of a sudden, a doctor said my child may not be able to speak or even walk. It was too much to accept,” he said.
He said that although there are numerous challenges families dealing with autism encounter in Nigeria, the cost of treatment and therapy is the most challenging of them all.
“We spend at least N600,000 on treatment and therapy every three months. That means in a year, almost N3 million is required to take care of our child,” he said.
Autism is a condition rarely talked about in Nigeria. It is considered one of the most ignored health issues in the country. There is low awareness and inadequate provision for early diagnosis and management of the neurodevelopmental disorder.
As a result, children born with autism are denied necessary care because their families cannot bear the financial implications that accompany such a health condition.
Some persons with autism are also isolated and locked up by their families due to the stigmatisation attached to having a child with autism.
Autism Spectrum Disorder
ASD is a highly heterogeneous group of neurodevelopmental disorders characterised by different levels of impairment in social communication and interaction, repetitive behaviours, and restricted language ability.
It is usually first diagnosed in early childhood and the effects and severity of symptoms are different in each person.
According to the World Health Organisation (WHO), people with autism often have co-occurring conditions, including epilepsy, depression, anxiety and attention deficit hyperactivity disorder as well as other challenging behaviours such as difficulty sleeping and self-injury.
The WHO also said the level of intellectual functioning among people with autism varies widely, extending from profound impairment to superior levels.
“Children with autism have problems communicating with other people and some of them may be non-verbal and some that are verbal can’t speak well,” an autism specialist, Doris Izuwah, told PREMIUM TIMES.
Ms Izuwah said that when it comes to social life, persons with autism may have poor eye contact and may experience difficulty understanding the thought process of another person.
“For you to say a child has autism, the social aspects and communication must have been affected,” she said.
The autism expert said that although there are no known causes of autism, some predisposing factors contribute to a child developing the condition.
She said autism is genetically influenced because of the gene of the child.
“We have other things like viral and bacterial infections, inability to digest certain foods, and exposure to chemicals which their bodies couldn’t process,” she said.
An increasing prevalence of ASD has been reported worldwide.
Data obtained from WHO indicates that one in 100 children lives with Autism globally. There are 135 million established cases of autism in the world.
Although data on autism in Nigeria and Africa generally is sketchy, a 2014 research indicated that 54 of the observed sample of 2,320 children in Nigeria had autism.
The research shows that the condition is relatively more common among boys as 45 males and nine females were identified with autism in the 2014 study.
Despite the fact that there are no recent statistics on autism in Nigeria, the majority of persons with autism lack medical, psycho-social and financial support.
“So far, we have had a one on one session with close to 4,000 families and the number increases day by day and we begin to wonder if the Nigerian government has accurate data of children with autism,” Francis Oko, the director of Ike Foundation for Autism (IFA), said.
Costly treatment, therapy
Mr Oko said the cost of treatment and therapy for an average Nigerian family is ‘punishing.’
He said the average cost of therapy alone for a child with autism ranges from N350,000 to N600,000 quarterly.
He said some adults with autism would have made progress if they had the economic means but because they cannot afford interventions, they are forced back and locked up in their homes.
“A family that cannot afford three meals in a day, how can they afford thousands of Naira to cover intervention for three months,” Mr Oko, a behavioural therapist, said.
Stanley Effah, whose son was diagnosed with autism in 2010, said the cost of treatment is more draining than other factors associated with the condition.
Mr Effah said his wife gave birth to Ferdinand, their third child and first son, in November 2008. He said they were taken aback by the slow development of the child.
“We noticed his growth and development was really slow compared to his older siblings and so we started visiting the hospital,” Mr Effah said.
He said his son was eventually diagnosed with autism at age two and this has changed their lives forever.
“I knew it wasn’t going to be an easy task for me as a father and for us as a family because managing older children is difficult not to talk of children with special needs,” he said.
He said raising Ferdinand has been a struggle due to the financial implications of treatment and different therapy recommended for children with autism.
“We have been putting in all our efforts financially over the years. We spend lots and lots of money every month on his food, treatments and various interventions.
“In most cases, you are spending so much, devoting your time and sometimes, you think the specialists are exploiting you because it doesn’t get better,” he said.
Similarly, Silvia Tagbo, who has a 12 years old son with autism, said the cost of managing the disorder is unending.
Ms Tagbo said a child with autism requires more than one therapy to attain their full potential.
“It is very expensive because for you to get the best out of your child, one therapy isn’t enough to fix all issues. You have to get different therapists for different purposes.
“If your child is interested in sports, you have to cover that, If it’s a child that doesn’t socialise, you have to get a one on one intervention, if it’s art or piano, you have to do the same,” she said.
Mr Oko, who is also the Vice- President of the Association for Behaviour Analysis Nigeria (ABAN), said many families suffer due to their inability to afford required therapy for persons with autism.
He said the Nigerian government must intervene urgently to get more people diagnosed, managed and placed in therapy.
He said this will help families live a more fulfilled life knowing that a condition did not make their child less human.
“The federal government needs to come in, they need to intervene urgently. The government can subsidise the cost of treatment, they can establish government owned centres at a reduced cost,” he said.
“Assessment fees range from N45,000 to N75,000 at some centres, but as a way of supporting families, we charge N15,000 at this centre. But even with this, lots of people cannot afford it.”
He said this is not sustainable for privates centres as it is costly to pay one therapist per child.
He said the government has the resources and capacities to fund and sustain autism management in the country.
“In developed nations, once a child is diagnosed with a spectrum, the government takes over that child. We have to put up a system to ensure this happens in Nigeria,” he said.
Ms Izuwah also said that if the government can find ways of subsiding the costs, more parents will present their kids for therapy.
“They can support NGOs at the forefront of autism by covering some costs, pay bills of children and even give these kids scholarships,” she said.
Late diagnosis, other challenges
Every year, thousands of children are believed to be born with autism in Nigeria.
Unfortunately, the diagnosis of autism is often delayed due to factors such as ignorance, inexperienced medical personnel, non-functional health facilities and lack of financial resources.
Once children with autism are not diagnosed and managed on time, they become a burden to their families and society, experts said.
A Senior Registrar at the Federal Neuro-Psychiatric Hospital, Calabar, Olusola Attoe, said symptoms like impaired social interaction, communication skills and repetitive behaviour are seen in autism and can be noticed from an early age.
Ms Attoe said it is important for autism to be diagnosed early and the diagnosis can be made before a child turns three years old.
“Early diagnosis is also important because the child will be checked for any other co-occuring medical conditions,” she said.
She said the management of autism requires behavioural modifications which are important at the early stages of the child’s life.
Ms Izuwah, the specialist and director of Our Lady of Guadalupe health foundation autism centre, said early diagnosis and interventions are key to getting good results in children with autism.
She said the benefits of early intervention are enormous because the child’s brain is still tender.
She explained that it is always good to present children before the age of three to achieve the best result.
She said they learn better and faster when they are young compared to when they are already grown and stuck in their attitudes.
“I recently diagnosed a 20 years old child of autism. This has deprived the child of the benefits that come with early interventions.
“These children just sit at home, not having access to education or health facility,” she said.
Stigma and discrimination
Mr Oko, the behavioural therapist, said that asides from financial constraints, most families experience stigmatisation hence denying them emotional and psychological support needed from society.
He said children with autism are rejected, abused and stigmatised within the family circles and society.
He said the high rate of discrimination has prevented lots of parents from seeking help for their wards.
Moses Ekuma, a lawyer and father of a 21-year-old with autism, shared his experience.
Mr Ekuma said more awareness is needed for the world to accept people living with such conditions.
He said people with autism suffer stigmatisation in various forms.
“When my child is stigmatised, I am also indirectly stigmatised but I know that this is my cross to carry,” he said.
“People usually say all sort of things like we used our child for ritual purposes amongst others,” he said.
More awareness required
Mr Izuwah said many Nigerians have poor knowledge about autism.
“Most people especially those in rural communities still do not know what autism is. They claim it’s a demonic disease or witchcraft,” she said.
She said if the awareness level is increased, the rate of stigmatisation will reduce.
She explained the need to also sensitise religious and traditional leaders at the community levels.
“If there is no awareness, the understanding of autism will always be low and people will not know what to do or how to relate with people living with the condition,” she said.
A review of Nigeria’s health budget for 2022 shows there is no provision for the disorder. PREMIUM TIMES attempted to speak to officials at the health ministry on why this is so.
The deputy director, media and public relations unit at the federal ministry of health, A.A.Chindaya, declined calls and failed to respond to messages sent by this reporter.
However, an official at the ministry, who asked not to be named, said the government would soon pay attention to people living with autism.
“We just started a branch for children with special needs, it is still at its infant stage. As for autism, we haven’t done anything on it. We are just trying to reach out to partners so we can be able to have broader contact with persons with autism,” the official said.
World Autism Day
The World Autism Awareness Day is marked on April 2 every year to encourage awareness about the existence of the disorder and remember millions of persons living with autism globally.
Many advocates also see the annual event as an opportunity to act on behalf of affected individuals and lobby for more services, equal treatment and an individualised approach to just about everything.
The theme for the 2022 World Autism Day is: “Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World.”
The theme was adopted by the UN in 2021 to reflect on some issues highlighted by the COVID-19 pandemic.