Recently a public event was held at the Muson Centre Lagos in which the centre of attention was the autistic child in Nigeria. By extension, what was really in focus was the terrible plight of children saddled with any form of disability in the African environment.
Life is tough for the child – any child, in Nigeria. A child coming into the Nigerian situation with any kind of disadvantage, or any special need, is one who has already stretched his luck to the limit, and is only waiting to live out the sordid reality of a terrible, unsparingly hostile fate.
The organiser of the Muson Centre event was a body known as ‘Autism Associates’. Only a few years past, they began to plough a lonely furrow in the virgin, and yet overloaded, territory of childhood disabilities in Nigeria. On this day, they wanted Childhood Autism and the body of impairments loosely labelled as ‘Autism Spectrum Disorders’ to be in the forefront of public consciousness, so that people would be aware, whether they liked it or not, that injustice on a large scale was taking place against the children of Nigeria, and it was their responsibility to stop it, or at least to try. Speaker after speaker declaimed on the notion. One or other speaker expressed ideas which were rather odd, such as the notion that Autism was not a ‘psychiatric’ problem – whatever that meant. But in the sheer relief of having one of the fundamental flaws in the nation’s care fabric receive an airing, it was easy to gloss over flawed explanatory concepts, and celebrate that fact that the mentally and socially challenged Nigerian child was, at last, getting his day in the sun.
Most adults, preoccupied with the massive problems involved in living from day to day, are not even aware of the concept, or the condition, known as Childhood, or ‘Infantile’ Autism. In the understanding of the average Nigerian, autism is an alien entity, not visible or tangible. It is bad enough to have Malaria and HIV/AIDs and diarrhoea and pneumonia to contend with. Those are illnesses that can, and do, kill Nigerian children by the hundreds of thousands every year, giving the nation one of the worst infant and early childhood mortality rates in the world. The Nigerian child has his plate full, without thinking about some fanciful, hard-to-define disease entity. And in any case, if you want to push the logic to its limit, autism does not kill.
Unfortunately autism, and autism spectrum disorders, are not alien entities, restricted to the white world. They are very present in Nigeria, and exacting a toll beyond the strict confines of any disease process. And autism, and childhood mental disabilities generally, including mental subnormality, are not rare conditions. Virtually every citizen has at least one member of his core or extended family who suffers from one or other of the conditions covered by this broad umbrella.
Autism is a condition that occurs among children from a very early age – the first manifestation is invariably before the age of thirty months. The children affected are usually male. They differ from other children in their behaviour, showing impaired social interaction, difficulty in communicating with others, and restricted, stereotyped behaviour. An autistic child may have a narrow interest in a particular activity, and develop quite uncanny ability, and boring repetitiveness at it.
Until recently, it was said that such problems did not exist in Nigeria. However more and more it is emerging that what has been lacking is the ability to detect it, and the infrastructure to do anything about it. The ‘absence’ of Autism from the medical records may be just another testimony to the limitations of the existing health services in the nation. An autistic child, unlucky enough to be born into a family that is not only Nigerian, but living in Nigeria, almost invariably disappears eventually into the vague and cavernous netherworld of the mentally disabled where with every passing day, the ability to make useful citizens of them becomes an ever more remote possibility, until the physically and financially exhausted family gives up and keeps the child home or sends him to the village to live out his miserable life with granny on the farm. Or – and this is more and more the emerging reality in the urban areas, they become part of the roadside destitute population.
To say that the environment of Nigeria is challenging for an autistic child, or a child with any form of disability at all, is to put the truth very mildly indeed. Whole families of those who can afford it have been known to relocate to Europe or America, just because they have one autistic member and are unable to get the facilities to look after him to the extent that the conscience of the parents would demand.
What is the cause, then, and the nature of Autism?
Like many other conditions that affect behaviour, there has been no shortage of explanations rooted in Philosophy and Psychology. One of the earliest theories was that autistic children are products of ‘refrigerator’ parents who are concerned with career and social advancement and provide an ambience in which the growing child is unable to express himself. As can be expected this theory, while it still had currency, led to parents feeling guilty and blaming themselves for their child’s condition.
There are other theories.
To this day, there is a strong lobby that wants the world to see the issue of autism as a social and ‘psychological’ problem rather than a ‘medical’ and ‘psychiatric’ one.
But the facts are out there already in the public domain. Autism is often linked with other ‘neuro-developmental’ abnormalities. Close family members have more mood, anxiety and social problems than the generality of the public. And the killer-punch is that three out of every four autistic children have significant mental sub-normality. Of these, the sub-normality is mild to moderate in two out of every five, and severe in three. Abnormalities on electroencephalography, which traces the activity of the brain, are common in children with autism. In a large number, specialised scans of the head show abnormal enlargement in certain structures. In one in three, there is epilepsy.
It is a lot for anyone to have to bear.
On the other hand a small percentage of autistic children, instead of being retarded, actually display exceptional intelligence, especially when it pertains to certain activities that they are interested in. Such children are said to have Asperger’s syndrome. Some such ‘endowed and challenged’ children have gone on to achieve great success in areas such film producers and authors. Through the insights gleaned from such creative efforts, it has occasionally been possible for ‘ordinary’ people to catch a glimpse of the world through the eyes of an autistic person. It is a perspective that is at once troubling and fascinating. The central theme is a deadpan woodenness that replaces the experience of emotion familiar to the rest of humanity. Happiness is a concept that is puzzling and alien. The sense of empathy and the awareness that other people are affected by one’s actions are severely circumscribed. People are not people. They are objects – sometimes curious, sometimes strangely helpful, but objects all the same.
It is a vista that is hard to dwell in, even fleetingly.
As far as other people are concerned, especially in an environment like Nigeria, where the parent is on his own, without information or assistance, the most common complaint that eventually makes the mother bring the baby forward for assistance is that he fails to develop speech at the appropriate time. It is common for the mother to think her child is dumb. Some would say they suspect the child’s tongue is tethered to the floor of the mouth and may need to be cut free.
Other things come into evidence that point the suspicions of the informed in the appropriate direction. The child plays alone, and not interactively with other children. He may amuse himself endless hours by engaging in a particular repetitive activity. He may carry out such strange behaviour as hand-flapping, finger-twiddling or standing on tip-toes for long periods. He may engage in self-injurious activity such as head-banging. His eating and sleeping habits may be erratic, causing his frantic mother endless worry.
Going back to the comparison between Childhood Intellectual Disability conditions, exemplified by Autism, and the more dramatic and attention-grabbing conditions like HIV/AIDs, Malaria, and Diarrhoea, it would seem to be a no-contest in deciding on how to allocate resources and what to focus on in a resource-deprived environment like Nigeria. Autism does not kill. Malaria does.
But death is not the only scourge that can be visited on society by disease. Some forms of survival are, if anything, more expensive and debilitating to the general psyche than death. Disability vitiates the quality of life for the disabled, and shames and humbles the rest of society. The quality of ‘normal’ life enjoyed by the members of society who have to live their lives with such challenges is a measure of the quality of the society itself. If a society does not even have the ability to routinely identify people with problems, not to talk of giving them assistance early on, the problem is compounded by that failure. The moderately subnormal child who is not picked up and channelled into specialised education (which is not available anyway) or offered treatment for epilepsy which will damage his brain further with every attack, becomes an adult who is totally incapable of doing anything for himself, and totally dependent on society for his sustenance.
What is the outlook for the autistic child, in the best of situations?
One out of three responds to the various ‘socialising’ imputs, and disappears into the general pool of society.
The remaining two out of three struggle, and often have to be assisted in some way or other through life.
In designing a strategy to the deal with autism and other disabling conditions, a good society would set as its goals to reduce destructive behaviour, promote learning, especially the acquisition of speech and the ability to communicate. Other measures would include the promotion of self-help skills. While the minimally impaired may benefit from mainstream schooling with sympathetic and caring teachers, the significantly impaired would require education that is intensive, structured and specialised. Speech therapy, behaviour therapy and other forms of therapy have roles to play in training the individual to the limit of his ability. Sometimes medication is required to control aggression, epilepsy, and impulsive behaviour.
The ability to carry out many of these interventions exists in bits and pieces all over Nigeria. What is lacking is a concerted policy to give it shape, and form the basis for getting a sense of the size of the problem, and scaling up the competence to deal with it.
What happens currently in Nigeria is that disabilities are not detected early – because they are hidden away, or the system fails to recognise them. This applies not just to autism and other childhood disintegrative disorders, but even to problems such as physical deformity and visual impairment. After several years of parental frustration, they come back into the system as young adults, untrained, and virtually untrainable. They are dependent on their families, or on society at large. Some go to swell the roadside population of destitutes.
What is required, to set Nigeria on the road to becoming a caring society, is that all healthcare providers are made sensitive to the existence of these problems, and are taught to enquire about the development of every child, even if that was not the reason the child was brought to the clinic. Every child, on whose development there is a query, is then referred to the regional assessment pools, made up of paediatricians, psychiatrists and psychologists for assessment. The strengths and weaknesses of each candidate are determined. Based on this, a personalised plan, including treatment, rehabilitation, and education, is drawn up, using accurate information about the location and capabilities of existing resources, such as Child Development Centre, Surulere, sparse as they are. As is usual in these matters, it may fall to Lagos to set the pace for the nation, by starting this awareness in its twenty five hospitals.
When anyone contemplates the gap between Nigerian society and the rest of the world in the provision of services, and facilitation of quality of existence for its disabled members, the challenge of catching up is daunting.
But, as the prevailing sentiment aroused by the advocacy of Autism Associates at its Muson Centre event eloquently demonstrates, to do nothing is not an option.
Femi Olugbile FRCPsych
(first published in a weekly column in a major Nigerian newspaper several years ago, but all details still valid)
