190,000 kids suffer brain disorder yearly
By ENYERIBE EJIOGU
Tuesday, August 28, 2007

•Nwokolo PHOTO: The Sun Publishing

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The global family of people suffering from autism is up in arms against the recent decision by the Irish government to deport a sis-year Nigerian boy, Great Agbolanhor, who is plagued by the condition.

Autism is a brain development disorder characterized by impairments in social interaction and communication, and restricted and repetitive behavior, all exhibited before a child is three years old. These characteristics distinguish autism from milder autism spectrum disorders (ASD).

In the wake of the protests against the Irish government’s decision, Founder and National Coordinator of Autism Associates, Okey-Martins Nwokolo told Daily Sun that current estimates show that over 190,000 Nigeria children suffer from this nuerological disorder.

Nwokolo, a clinical psychologist, reveals that "heritability contributes about 90% of the chances that a child will develop the disorder, although the genetics of autism are complex."
He says that it is generally unclear which genes are responsible. In rare cases, autism is strongly associated with agents that cause birth defects. Other proposed causes, such as the exposure of children to vaccines, are controversial and the vaccine hypotheses are unsupported by convincing scientific evidence.

Most recent reviews estimate a prevalence of one to two cases per 1,000 people for autism, and about six per 1,000 for Autism Spectrum Disorder, with ASD averaging a 4.3:1 male-to-female ratio. The number of people known to have autism has increased dramatically since the 1980s, at least partly due to changes in diagnostic practice; the question of whether prevalence has increased is unresolved.
Autism affects many parts of the brain; how this occurs is not very clearly understood. Parents usually notice signs in the first year or two of their child's life. Early intervention may help children gain self-care and social skills, although few of these interventions are supported by scientific studies; there is no cure. With severe autism, independent living is unlikely; with milder autism, there are some success stories for adults.

In the Western world where an autistic culture has developed, parents and sufferers are able to seek for their children and themselves.s, while others just believe it is simply another way of being.
However, in Nigeria professional care for autistic children is practically not available. It is in this light that the case of Great Agbonlahor has stirred the empathy of individuals who read his story in the foreign media. One globally notable individual who once suffered from autism and learnt to live a normal successful life is Bill Gates, the world’s richest man and chairman of computer giant, Microsoft Corporation.

Noting that many other children in the developed world get proper professional care in managing their condition, Nwokolo agonises that "the huge population of autistic Nigerian children are receiving no treatment whatsoever."

He adds: The Irish government must let the irish government understand that this is a huge injustice and a significant compromise to the future of a young boy whose access to professional educational and medical help is being terminated."

Six-year old Agbonlahor was born on the 2nd March 2001 in Italy to his parents Olivia and Martins Agbonlahor, Nigerian Nationals who were lawfully resident in Italy at the time of the birth. Until his deportation from Ireland on August 14, the boy and his twin sister lived with their mother, Olivia. Great and his sister were brought to Ireland when their mother, relocated to Ireland in March 2003 to claim asylum in that country.

On the 14th December 2006 Dr. Clare Craven, Consultant Child and Adolescent Psychiatrist, confirmed that Great met the criteria for a diagnosis of Autistic Spectrum Disorder. Previous to this, it was believed that Great suffered only from ADHD. Therefore, this critical fact was not before the Minister in making his decision to refuse asylum and to issue the deportation order against the Agbonlahors.

Great’s mother, Olivia is deeply pained that persons who are autistic in Nigeria are subjected to stigma, discrimination and harassment within society and are also subject to discrimination in the failure by the state and its policies and practice to provide essential life enhancing educational treatment.
According to Great’s future and potentials risks a significant compromise if he does not get appropriate support and intervention.

He says that there is a pathetically low level of awareness about autism spectrum disorders in Nigeria. As a pervasive developmental disorder autism affects many areas of a child’s development, particularly: language, communication and social skills. Children with autism usually have language delays or other communication problems; poor or limited social skills and engage in repetitive behaviours. As a spectrum disorder, autism affects people in different levels of severity ranging from severe to mild. It was once a rare disorder but has become so common that it is reputed as the fastest growing childhood disability and the third most common developmental disorder.

Autism is not an "oyibo wahala"
Statistics from the American Centres for Disease Controls reveal that autism’s prevalence rates has risen from 1 in 10,000 in 1943 to 1 out of every 150 births in February, 2007.

Autism is not an "oyibo wahala", it can occur in any family irrespective of race, religion or social status. It has no known medical cure and researchers are yet to pinpoint the exact cause(s). However, autism spectrum disorders are treatable via intensive behavioral and educational intervention. There is evidence, that early identification and intervention can help affected persons overcome many of the symptoms and lead a productive and successful life. Although autism is typically diagnosed between age 3-4, research has shown that it can be detected as early as 18 months. Many children with this puzzling condition are currently not being identified early in Nigeria and a majority are not receiving any meaningful intervention.

They are simply locked away at home waiting to "outgrow it" or "be delivered of the spirits" or end up on the streets as ‘mad’ persons. Although disabled people are generally discriminated against on grounds of their ‘abnormality’ or for not being ‘normal’ , those with physical challenges such as the deaf, blind, lame and even the mentally retarded ones seem to be gaining a measure of social acceptances. At the short end of the stick; most stigmatized and most rejected are those whose disabilities are "unseen". In the case of autism for instance, in which sufferers appear physically normal with no physical features that sets them apart, the ‘victims’ are regarded as a critical evil sent by the spirits or possessed. Parents of other children fearing that such spirits might transfer to their children, ensure that wards have no form of association with the ‘evil’ one!

Stigmatized
In Nigeria, stigmatization of persons with autism is one major challenge sufferers face. He recalls how he once approached a proprietor to admit a high functioning autistic child he tried to enroll in a mainstream school. Initially the proprietress accepted the autistic child.
Nwokolo continues the story, saying: "Three days after she asked me to withdraw the same child she passionately admitted.

When I probed, she confided in me and explained that 15 parents with kids in her school have threatened to withdraw their them if that "demon possessed boy" is not shown the way out. It is the same experience at churches and social gatherings. People gaze, muse and sniff at parents and children with autism especially the ones who can’t sit still…hyperactive ones. They pass comments such as ‘this wicked woman has used her son or daughter for rituals" or who knows what sin the parents have committed to deserve such curse on their children.’

It’s really dehumanizing and suicidal when society wrongly accuses a person. A lady whose 20 year old son was recently diagnosed autistic came to my office about 2 months ago jubilating and singing songs of praise to God and thanking me for vindicating her.

When I queried her she reported that the husband and his family abandoned her when the boy at about age 3 began to lose some of the words and skills he had previously acquired. She was thrown out to the street with the boy, with no job or any form of financial support. A local church where she took the boy for prayers later employed her and eventually she was able to acquire some education and moved to Lagos in search of a better a job. In fact, we are working out logistics to carry our awareness campaign to that village. I can go on and on with similar examples of the ill and dehumanizing experiences that persons and families with autism go through in Nigeria.

I hate to say this but it is my strong opinion that Great Agbonlahor will be greatly disadvantaged if he remains in the country without receiving appropriate services. Apart from the fact that he may not get adequate care and professional support, Great and his family stand the risk of being severely persecuted because of his condition which is seriously misunderstood in this part of the world.

He stands the risk of getting heavy knocks and slaps if he fails to greet the elders as expected culturally. If he fails to reciprocate play advances from peers, the later will misinterpret it and use abusive language and call him names such as "Okpoko" " Mumu" or "Olodo" …all Nigerian languages for imbecility.

Majority of the parents and children with autism who are resident in Nigeria, have over the years gotten used to these discriminative experiences and seem to have learnt to live with them. I do not know if such adjustments are easy with an autistic child and family who may have spent a life time in more civilized environments."

Future outlook for autistic persons
With education and public enlightenment however, a certain level of awareness seems to be setting in. Nevertheless, the cultural beliefs and stereotypes seem to be very deeply embedded in the rural areas.