With hands on her head, and tears rolling down her cheeks, Aluko Olokun, a mother of four was devastated seeing her marriage of over 20 years crumble over her fourth child’s health challenge.
The retired chief radiographer with Lagos State Ministry of Health was having a blissful marital life until her fourth child’s mysterious illness.
“I cannot say I was careless because I work in the hospital and I always took him along for treatment, so we were all confused over this strange development after it was confirmed to have autism,” she noted.
Olokun suffered many financial losses as she had to juggle between her job and the health care of her child. She was compelled to engage the services of therapists as recommended by a doctor, paying N25,000 monthly for service fees.
“The first set of therapists I got helped improve his situation but that group was disbanded; so I had to employ therapists privately,” she said.
The chief radiographer, who was struggling with her lean purse and how to provide welfare for her autistic child was traumatized when she discovered that the new set of therapists she employed were using belts on the boy, thereby aggravating the already tense situation.
“It was my neighbour who called me one day and said these people you call therapists, they are using belts on your child.
Then I realised why my child was suddenly aggressive with me, he would struggle and fight with me. Initially, I didn’t know he was trying to report the therapists who were beating him with belts but couldn’t do it the usual way.” Olokun said.
Similarly, Mabel Udenta, a single parent had to quit her job as a human resource executive in an insurance firm to take care of her girl diagnosed with autism.
“I didn’t get to know on time what was wrong with my girl until about seven years ago.
“When it got to me the nature of the ailment that it does not have a permanent cure, I sank into depression and was disillusioned, not knowing how to cope with what fate had thrown at me,” she said.
In addition, she said; “I had to give up my job to take full-time care of my child with special needs because I could not afford to hire caregivers, my salary hardly meets our needs not to talk of engaging caregivers.”
Besides the financial challenges, Udenta said that one major challenge she encountered in raising her child was communication.
“Getting to communicate with her was a bundle of problems. It was stressful and encapsulated with anxieties especially at an early age because she could not express herself as a normal human being.
According to her, “The most challenging experience is the fact that many parents in my neighbourhood would not want their children to come near my daughter, not to talk of playing with her.
The stigmatization was driving me crazy with depression more than every other challenge. We were seen as a disgrace, and evil-doers, who are being punished by God.”
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Olokun and Udenta’s experiences are similar to what millions of homes in Africa’s biggest economy are facing with an autistic child.
According to Dotun Akande, proprietress of Patrick Speech and Language Centre at Ikeja, “Autism is a complex developmental disability that typically appears during the first three years of life as a result of a neurological disorder that affects the functioning of the brain, impacting in social skills and interaction, communication, and behaviour.”
Autism, also called autism spectrum disorder (ASD), is a complicated condition that includes problems with communication and behaviour.
“It can involve a wide range of symptoms and skills. ASD can be a minor problem or a disability that needs full-time care in a special facility.”
People with autism have trouble with communication, Akande said, noting that they have trouble understanding what other people think and feel.
“This makes it hard for them to express themselves, either with words or through gestures, facial expressions, and touch,” he
explained.
Also, late diagnosis is another major challenge families managing an autistic child face, experts say.
It took Olokun 17 years to realise her son was an autistic child after ignorantly spending her money treating the wrong ailment.
According to the National Center for Biotechnology Information (NCBI), several factors are responsible for the late diagnosis of Nigerian children with autism.
These include stigma, ignorance about autism, negative cultural practices, tortuous or delayed pathways to care, inadequate number of trained personnel, inadequate health care facilities, poor access to existing facilities, and burden of care which may include both financial and psychological factors.
In the case of Olokun, she took the boy to Patrick Speech and Languages Centre at GRA Ikeja and fortunately, she was among the few Nigerians given scholarships for their autistic children, as the school offered to train the childfree.
The scholarship covers his registration, assessment, and tuition which amounted to more than N1 million per year.
Most times these children are on scholarships because their parents cannot finance their training, a representative of Patrick Speech and Language Centre who spoke on anonymity said.
Centers such as the Patrick Speech and Language Centre are faced with financial constraints in areas such as; constraints supporting indigent families who cannot afford the fees to train their children.
Lack of financial support to procure training facilities, and to organise training for parents who enable them to get involved in the training of their children, among others.
Experts believe that more children are diagnosed with autism now than ever before, but low awareness has limited treatments and care.
Olokun is worried that many children may be living with autism unknowingly because there is no adequate awareness of it.
“People with such cases in Nigeria were going from one prayer house to the other, and/or from one herbalist to another in search of a remedy in the past.
“In some cases, the parents, especially mothers of autistic children, were accused of witchcraft against their children,” she said.
