Akande
As Nigeria joins the world to celebrate this year’s Autism Week, parents of children living with the condition have called for increased awareness and support for them, Bukola Adebayo reports
The decision that Shade Aturi regrets most in her marital life is giving birth to Samson. Instead of pride, she feels ashamed anytime she’s identified as the boy’s mother.
In fact, she would rather that Samson, the last of her three children, died at birth. But the boy is now seven.
What is Samson’s sin? He is autistic. According to his mother, who shared her experience with our correspondent at an awareness seminar for parents and caregivers of children with special needs in Lagos, her son’s condition has strained her relationship with her own parents, her husband and even her neighbours.
Aturi said though she loves her son, she believes her life could have been a lot easier if she had not given birth to him.
At delivery, Aturi did not suspect that anything was wrong with her infant son, and the medical workers who attended to her didn’t tell her anything either. Rather, one of the telltale signs that drew her attention to Samson’s condition was his inability to pronounce several syllables at age three.
She said, “He was struggling with syllables that his peers had mastered and because of this, I could not take him to school. I kept him in the daycare around the house, though his peers had moved on to nursery school. I thought he was just academically deficient.
“He did not relate with anyone, not even with his siblings; and my neighbours’ children told me that they could no longer visit our house because their parents told them to stay away from Samson. Even his Sunday School teacher told us to be prayerful because Samson was ‘strange’.”
After several visits to the hospital without any definite explanation on what was wrong with her child, Aturi’s parents advised her to take him to a traditional mental institution in her home town in Benue State.
She said, “The medical doctor could not tell me why he was slow at everything. At age four, I was still helping him out with everything, including feeding. Eventually, I took him there, but when there was no progress after a year and we had spent a lot, I brought him back to Lagos, hoping he would get better someday.”
Samson and other children suffer great stigmatisation in Nigeria because this condition is seen as a mental challenge. Consequently, the children and their parents are sometimes ostracised from the society.
Affected parents and experts in the treatment of this disorder have called for increased awareness on autism. This, they said, should be done with a view to stopping stigmatisation against people with autism and assisting them to lead normal and inclusive lives.
The Executive Director, Blaizing Trails International Centre, a centre for children with special needs in Texas, United States, Dr. Anna Lamikanra, who spoke with our correspondent in Lagos at the GTBank 2013 Autism Week on Tuesday, said autism was a complex neuro-behavioural disorder and not a disease.
Lamikanra said, “A child with any of the autism spectrum disorders will have trouble communicating. They have trouble understanding what other people think and feel. This makes it very hard for them to express themselves, either with words or through gestures, facial expressions and touch.
“A child with autism is very sensitive, may be greatly troubled — sometimes even pained — by sounds, touches, smells or sights that seem normal to others. They may have unusual responses to people, attachment to objects, resistance to change in their routines, and/or aggressive or self-injurious behaviour. At times, they may seem not to notice people, objects or activities in their surroundings; but it is not madness.”
Lamikanra, who led a delegation of over 13 experts into the country as part of activities to mark the World Autism Day, acknowledged that a major factor militating against early treatment and management of the condition was stigmatisation and discrimination against children and adults with autism.
She noted that many parents, due to socio-cultural disposition towards persons with neurological disorders, often prefer to hide their children from the perceived discrimination from the society to seeking help for the child in such a condition.
However, she noted that this practice was not only damaging but also inhuman, as it could lead to more neurological complications.
Lamikanra said, “Parents have a huge responsibility in helping their autistic children to live well, independently and also contribute their quota to the society. They must help the kids to seek treatment early. There is enough scientific and evidence-based cases that have showed that early intervention would help a person with autism live confidently and normally.”
She stated that parents could not shoulder the blame for the stigmatisation against people living with autism, adding that caregivers, including, teachers and doctors, must be educated on early signs towards the detection and management of autism in children.
“Our parents need help with these special children. They have questions and worries: why is my child behaving like this? Why is she slow or unpredictable? Why is she not talking?” We must also help parents deal with autistic children and how children with autism are perceived, because it is still poor due to lack of education on the disorder.”
Also, a consultant psychotherapist, Dr. Maynunah Yusuf-Kadiri, who also spoke at the forum for caregivers, said in order to stop discrimination and stigmatisation against people living with autism, parents and caregivers must be educated on the disorder.
“Parents of autistic children have come to me asking if it is alright for them to ‘mercifully’ kill their children. I remember a woman who lamented that her husband had left her, her older children were complaining and wanted to know if she could go ahead and abandon the child. That is the dilemma of a parent with an autistic child in a society that is not informed. As a gatekeeper, I must let her know that there is help for her and she is not alone.
“To foster early detection, people that I call gatekeepers must be educated. Gatekeepers are teachers at the daycare, psychiatrists, parents and faith-based counsellors, people who come in contact with children on a day-to-day basis. When these problems start, they take these children to imams and pastors, thinking it is a spiritual problem. We must educate them to also tell these parents what to do,” he said.
Also, a psychologist, Dr. Lawrence Sutton, said autism in children could be diagnosed as early as 18-24 months or in the first three years of the child’s life.
He said, “I work with adults with autism and I have discovered that most were initially diagnosed as mentally disturbed or retarded; meanwhile, they just had autism. There is no blood test to detect that a child or adult has autism, it is majorly the behaviour that is evaluated. Parents and caregivers must not dismiss signs and must be ready to damn all stigma to help the child.”
Sutton, who has been to the country twice on consultation and screening programmes for children with special needs, said Nigeria could not be excluded from the global burden of autism. According to him, on his last visit, 20 out of every 33 children with special needs which the team screened, were autistic.
He noted, “This is a high prevalence in any situation and it shows that autism is a global challenge that we must all conquer and cannot wish away. We must all come around and think about how we, experts, parents and society can help this growing population of autistic children live normally.”
The Executive Director, Patrick Speech and Language Centre, Lagos, Mrs. Dotun Akande, said another challenge facing parents with autistic children in Nigeria was the high cost of managing the disorder.
Akande, who is also a parent to an autistic child, said medical treatment for an autistic child is expensive due to lack of experts and facilities. She called on government to assist parents with the cost of treatment.
She said, “Therapy is expensive all over the world, but the difference is that in the United Kingdom and the U.S., their governments support the children and parents by paying for treatment and diagnosis till a certain age. It is a federal law over there for children with special needs. But in Nigeria, there is no provision for that; so, the parents bears the burden alone and this is very frustrating.”
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