Today, many children are suffering from Autism Spectrum Disorders (ASD), a condition which is different from Down Syndrome. Parents are waking up to the reality of this strange brain disorder, which is draining them economically, emotionally and psychologically. JOKE KUJENYA reports.
WITH a promising career, Mrs Elizabeth Ukaigbe, could not have wished for a better life. Things were going well for her family until life took a turn for the worse 13 years ago, with the birth of her third daughter, Rosalyn Ukaigbe.
“When I had her, we had no premonition that anything could be wrong with her in any way. She was growing up fine until her second birthday. Prior to that, I had noticed she barely spoke anything audible. So, my first instinct was, could my daughter be ‘deaf’. But I took her to the hospital where they ran series of tests and I was told her hearing mechanisms were quite sound. So, what could be wrong? My heart kept pondering. Rosalyn was just different. At such a tender age, she could play with a particular toy from morning till night, weeks on end. When we try to change the toy for another one, she would get aggressive and kick, but no sound.
“I started losing concentration at work. I became so disoriented, it was hard for anyone close to me not to have noticed that. Forget it, my husband practically lost his composure. In fact, I would say I was much stronger. But then, both of us still did not know what the situation we were grappling with was all about.
“It was my boss who called me one day and suggested that perhaps my daughter’s problem was a disorder called autism. Au-what? I could remember my mouth could not form the words. She repeated ‘autism’. When she saw how bewildered I looked, she took my hands calmly and walked me to her office. That was when she told me that she too, had learnt about autism in the United States of America (USA), during one of her trips. I got home, told my husband, and we visited an organisation suggested to me by my boss. Well, Rosalyn is now seven years of age and she has really improved. Though, I must tell you, the battle is still on but quite better that when we started. I have been given assurances time and again that she will outgrow it someday.”
For parents of children with autism, life can be a despair. “Raising them is equally financially exasperating.
It turns one into a beggar,” said Mrs Amanda Ehi, when her daughter, Katherine, was diagnosed with autism at the age of five. And I thought, what is autism? I was both afraid and devastated to describe it mildly. Since then, Katherine had gotten all the treatment and services required, but here we are, still at it,” she told The Nation.
As of today, the number is on the rise said Mrs Dotun Akande, Founder, Speech and Language Centre, Ikeja, Lagos. “And while it is unfortunate that like most medical cases, Nigeria does not have reliable statistics, autism affects one in every 88 children. The painful part is that many parents of autistic children are left devastated and exasperated. And where it is not well managed, it could even break the marriages where the couples are left oblivious of how to manage the situation.”
Monday and Tuesday, April 8-9, 2013, the Guaranty Trust Bank (GTB), at its Orange Ribbon Initiative two-day seminar on Autism in Nigeria, at the Muson Centre, Lagos, the bank noted that “world research statistics show that Autism Spectrum Disorder (ASD) is on the rise with an incidence of 1 in 88 children being affected. However, reports show Nigeria ranks low in the management of children with autism. And this is what prompted the bank to work in unison with other concerned organisations to initiate a variety of projects towards managing and improving awareness and management of ASDs.”
Autism is described as a complex disorder that is not caused by bad parenting or spiritual attacks. Of the one in every 88 children born with autism, 80 of them are said to be boys. The disorder, research says, grows from mild to severe given that every child is different and so, it warned that generalist should be viewed cautiously.
Akande said: “For now, there is no cause or cure for autism. But therapeutic intervention such as Applied Behaviour Analysis (ABA), speech, occupational and music therapy as well as dietary intervention has maximised the potential of the children with autism.
“It is still worrisome that in Nigeria, there are no statistics to work with. So parents only rely on the doctor and sometimes, school teachers to confirm their fears. What also gets everyone concerned is that, autism children find communicating with orders and relating with the real world, difficult. They do not understand social etiquette and have few friends. They have restricted or repetitive behaviour. They exhibit abnormal response to sensory issues and sometimes demonstrate aggressive and self-injurious behaviour. In fact, children with autism display odd behaviours. They play in isolation. They lack empathy. When they are with a group of other regular children, the retract and play on their own. And most of them barely talk or listen to any other person at all. Worst of all, they do not answer to their names.
“But these features are not enough to jump into conclusion,” she advises. “Children with peculiar traits such as those mentioned above should be taken for thorough medical assessments such as hearing test using the M-chart, to know where his or her strengths and weakness are. This would be used to draw up the plan through which such children can be helped for the hope of a slow but steady recovery.
“Autistic children can lead a normal life. They can learn skills such as musical instrument and other forms of arts in six months if well catered for. Autism in children is not a death sentence,” she affirms. “With love and patience, autistic children can be taught any skill in this world. The environment in which they must be helped must be made conducive for the children due to their hyper-sensitive nature. All their trainers must be child-friendly and display no form of aggression. And this is the point we advise fathers in particular to watch their reactions in the presence of these children till they understand what the problem really is.”
According to research, not all children with autism will be like that forever. A lot of them record dramatic progress when they get early intervention while some of them totally recover from the disorder.
“Akande said: “some of them may even have been speaking for some time and then lose it as the disorder progresses. But when this happens either at home or school, the first reaction is to take them for medical attention. We do this because it is expected that at a particular age, they must have been talking. Then they stick to a particular form of behaviour. Some of them even walk tip-toeing and often, they don’t like being touched. There are some of them who are overly sensitive to sounds and you see them covering their ears or shut their eyes to light.
“Yet, the signs are vary, not just one, but a combination. This then means that for the child to gain the much needed help, he or she must have trainers in various aspect of the lapses observed. Some of them display abysmal traits in their speech, hearing, facial expression and in verbal or non-verbal behaviours among others. Some of them even speak so low you have to be really tolerant to hear them. And when you sing their names, it does wonder for them.
“Their diet is also very essential in the sense that autism is a neuro-biological disorder which means that there is something in the biological composition of the child that is different. And there is also something in the neuro, that is, the brain, that is not together. So, changing the diet of such children makes parents discover that the child records some level of improvement. For instance, wheats have been found to affect the guts of children with autism. Some of them have leaky guts, that is, they have holes in their intestines. And if you give the right diets, those holes can heal. They often exhibit features such as when you are trying to get the attention of the child, they are not responsive. And when you start a rhyme, their faces light up. We have found out that music is something they really respond to.”
Akande, who also shares her first-hand experience with her 9-years old autistic son, Agbolade, now a JSS3 student in a regular school, and doing quite well, said: “Now, he goes to school and does his things like a regular such that if one is not told, you would never have suspected he is an ASD.