*They are not products of witchcraft – Experts
By Chioma Obinna
Imagine having to take care of a child with disability without knowing what to do or where to go? If you can imagine these, then you will appreciate what a number of Nigerian parents who have children with Autism Spectrum Disorder, ASD, are going through.
Like the family of Mr. Adebayo Olatunji Nurudeen, there is no gainsaying that bringing up a child with special needs and not sure of his/her future can be overwhelming.
The license to a child’s happiness is embedded in his or her rights to life, education and basic living standards. Legally, every Nigerian child has the right to education and good health, rights to develop, and to participate actively in the promotion of his/ her rights, according to the 1990 Convention on the Rights of the Child. These also include the right of children with disability. But the one dollar question now is: Are these children really getting attention as written in the said convention which Nigeria has ratified and signed into law?
Sadly, Ameer, the son of Adebayo, and other Nigerian children living with ASD, a lifelong developmental disability that affects the way a person communicates, relate with people around them but have difficulties with everyday social interaction and other disabled children are denied these rights.
Today, little or no attention is paid to various disabilities in Nigeria. Many of these children are erroneously believed to be products of witchcraft while some are locked up in a room by their parents and left to die.
Most children living with ASD are denied basic human rights, resulting in poor quality of life and trauma for their parents, relations and care givers.
What causes autism: Scientists are trying to find out exactly which genes may be responsible for passing down autism in families. Experts say autism tends to run in families, and may be inherited. Other studies are looking at whether autism can be caused by other medical problems.
However, there is growing concerns that majority of these children suffer stigma and are relegated to the background; many are not enrolled in schools and they are also not brought out to access health care in appropriate institutions.
Observers are worried that when their parents are no more, they may turn out to be a nuisance in the society. And this, they say, is against the 1990 African Charter on the Rights of the Child of which Nigeria is a signatory. As enshrined in this legal document, every child has a right to education and good health, right to develop, and to participate actively in the promotion of his/ her rights.
According to a research by the U.S. Centres for Disease Control and Prevention, autism rates in America affect one in 68 children. Unfortunately, the driver of that increase is still unknown. Many experts believe the rise is largely due to better awareness and diagnosis rather than a true increase in the number of children with the condition.
Another cause to worry is the fact that despite the debilitating nature of the condition, many Nigerian professionals still do not understand the nature of the epidemic and how it affects the children.
According to Dr. Anne Lamikara, Blazing Trails International, one unique thing about autism is that it appears about 24 months after birth. “You have a normal child all of a sudden his skills start regressing and you end up having a child with autism.”
Lamikara said ASD affects 1 in every 150 children around the world and is a lifelong developmental disability that affects how a person communicates with others.
Worse still, the Federal Ministries of Health and Education which should have been on top of the situation do not have any structure in place and not aware of the growing incidence of developmental disabilities that is bewildering and handicapping these future leaders.
Also in the views of a Consultant Psychiatrist & Psychotherapist, Dr. Maymunah Kadiri, autism, is said to be the fastest growing developmental disability and has become the most urgent international health and educational issue. It is a disability that interferes with the normal development of the brain resulting in impaired speech, language, communication, play and social skills.
According to researchers, the disorder occurs more in males than females at a ratio of 4:1. It has no known medical cure or test but is highly treatable. There is evidence that behavioural and educational intervention with young children can significantly remediate the deficits in language play and communication skills.
However, early intervention remains key for better prognosis. But health watchers are saying that although, there have been increase in concern and outcry over the rise in cases of autism spectrum disorders, the situation in Nigeria remains the same.
They posited that outside the country, the concerns have resulted to efforts ranging from the enactment of laws mandating early diagnosis and intervention; provision of free appropriate services and education for children with autism; acceptance and inclusion of such children in mainstream or regular schools; amongst others. Unfortunately, in Nigeria, particularly, in rural areas, persons with autism and disabilities are thought to be possessed and evil and the level of awareness about autism in Nigeria is pathetically low.
According to the Coordinator, Autism Associates, Mr. Okey Martins, “Many children in Nigeria with autism are either not diagnosed or misdiagnosed. They either end up being hidden at home or clubbed with the deaf, dumb or mentally retarded children. In rural areas where there are no psychiatric hospitals, majority end up on the streets as insane fellows.”
Martins lamented that, today, there are no schools for children with ASD. Although there had been attempts by parents of autistic children to set up schools to cater for children with autistic like challenges, lack of fund, and limited skills hindered the vision.
“What is in the country today is a centre that caters for persons with physical, mental and developmental disabilities,” he stated.
For Martins, exorcism is the common treatment and mothers are blamed for their children’s autism. There is a lot of stigma and discrimination against disabled persons.
There is no recognition of autism as a disability and nothing; absolutely nothing is available to meet the needs of those with the condition.
Continuing, he said: “Even the Federal Ministry of Education does not categorise autism as a distinct disability despite the fact that the condition is currently reputed as 3rd most common childhood disorders and fastest growing developmental disability. Many of the so called “mad” persons on Nigerian streets are recoverable persons with autism who were neither diagnosed nor treated. Yet they could have been treated. They could have been among our leaders today.”
In a report, a Consultant Psychiatrist, Child and Adolescent Centre, Federal Neuro Psychiatric Hospital, Oshodi, Dr. Grace Ijarogbe, who regretted that relations and neighbours attribute autistic symptoms in children to witchcraft and diabolic activities said autism has nothing to do with such things.
How it is treated
With early treatment, most children with autism learn to relate better with others. They learn to communicate and to help themselves as they grow older. Depending on the child, treatment may also include such things as speech therapy or physical therapy. Medicine is sometimes used to treat problems such as depression or obsessive-compulsive behaviours. But the type of treatment depends on the symptoms, which are different for each child and may change over time.
How families can deal with having a child with autism
An important part of your child’s treatment plan is making sure that other family members get training about autism and how to manage symptoms. Training can reduce family stress and help your child function better. Some families need more help than others.