There are several areas in child health in which early detection measures are likely to make a critical impact upon the health and education of the child or at least diminishing the impact of developmental disabilities. Autism is one of these areas.
It would be very interesting to know if any country in Africa -east, west. south and north- has managed to solve the problem of provision of services for children with learning difficulties and behavioral problems.
Identifying autism and its complications has had limitations....the interventions themselves are costly particularly in the manpower required to perform the services.
Perhaps it is because Paediatricians spend so much time diagnosing common childhood problems-e.g.gastroenteritis,epilepsy and other common medical conditions that can nowadays be diagnosed and managed by general practitioners-that they become rather shortsighted and fail to see the wider problem of behavioral difficulties in children. It is the time now to consider behavioral problems in children as a wide problem.
This “hidden handicap” is a most serious disability as it frustrates communities and otherwise normal families, often going unsuspected and unrecognized even by doctors.
In order to consider what are the best practical measures to help the children and their families and to ensure that these children receives the attention and the care. We as Paediatricians must put more efforts to identify those children and decide what we can usefully do to help the many-not only the few. The greatest problems are with the rural underprivileged majority rather than with the privileged urban minority
None of us as professionals can deny that this is a major problem but what is the most effective action? In ideal, and wealthy, situations the children with behavioral difficulties can be helped; a few by medications, many by the care of parents, teachers and the community. Children with moderate to severe behavioral difficulties attend special schools which are expensive education in any country of the world, but are the only path for the child to realize his or her potential. The priorities for these children are early detection and early intervention to prevent if possible any disability.
Between 1930 and 1975 the world population increased by 2 billions; it doubled. Today the total is 5 billions and rising. At least two third of the total live in the so called “underdeveloped or developing” countries of which Africans are included. With this increase in the population and the associated problems subsequent to this, behavioural difficulties have become a major problem that needs attention and solutions.
In many countries circumstances make these priorities though no less valid. either impossible or too expensive to attain. Reasonably early detection of autism is desirable in both urban and rural communities. I think that throughout the world it is unusual for any behavioral difficulties to be recognized by the mother or care-giver within the first year of life or so. The problem in obtaining specialist advice is another problem and it is not surprising that in Africa perhaps less than 2% of children reach a special school and possibility of special education provision.
Special education is rarely started early enough and even if, against all difficulties, a child does gain a place in the school, the majority only starts at 6 or 7 years, by which time they are “fixed observers”
Parent’s guidance is an additional task to be added to the duties-by no means light and easy-of the primary health care workers.
What is Autism?
Autism is a lifelong developmental disability that prevents children making contact with other people. It can profoundly affect the way children communicate, behave and limit their ability to interact and relate to others in a meaningful way, develop friendships, show signs of affection, appreciate cuddles or understand other people’s feelings. Because the severity and variation of symptoms, the disorder is often referred to as Autistic Spectrum Disorder or ASD rather than autistic continuum disorder. Spectrum in now preferable; it suggests a collection of related but varied conditions whereas the continuum suggests a smooth transition from one end to the other, which is not the case with autistic disorder1. The International Classification of Diseases 10th edition 2 and Diagnostic and Statistical Manual 4th edition 3 do not recognize the term ASD but refer to pervasive developmental disorders. Autism affects more children than cancer, cystic fibrosis and multiple sclerosis combined. One in every 250 babies has autistic spectrum disorder. The condition is four to five times more common in boys than in girls.
Impaired social communication and delayed speech and language are the developmental areas that cause most concern to parents of young children with autism. The process of language acquisition in children with autism does not follow a normal pattern. In the early stages, echoed words and phrases are evident; later this echolalia will be replaced by learnt language that can be out of context. Some children become very verbal, yet fail to learn the rules about dialogue.4
Impaired social interaction is another diagnostic criterion for autism. Children with autism tend to talk AT rather than with people and are unaware of others feelings and points of view. Typically, such children have difficulty attending to anything outside their areas of interest.5
Impairment in areas of imagination is wide. They lack creativity; while some children may show skill with constructional toys such as Lego, others are capable of functional play yet they fail to develop these activities in an imaginative way. There is repetitive quality about their play and it never seems to lead anywhere.5
In addition to the primary characteristics that define the autism syndrome, there are associated features that are frequently present as well. Although these features are not essential for a diagnosis of autism, they are often observed in this group and can have important implications for the management of children with autism.
Several cognitive abnormalities are frequently observed in young children with autism: distractibility, poor organizational ability, difficulties with abstraction, and a strong focus on details. Mental retardation is an additional cognitive disability in about 70% of children with autism and there is often an uneven cognitive profile with some skills being strong while other aspect of cognitive functioning are quite limited.
Abnormalities of posture and motor behaviour include stereotypes like arm flapping and grimacing, abnormal gaits, and odd posturing with hands. Under-and over- responsively to sensory impact is common; some children with autism resist being touched while others ignore sensations like pain. Many children with autism are fascinated by specific sounds or taste.
Abnormalities of drinking, eating, and sleeping behaviour and fluctuations of mood are also frequently observed. Eating, drinking, and sleeping problems often resolve themselves by adolescence but can be troublesome prior to then. Eating a limited variety of food and staying up all night are among the most difficult of the ongoing problems parents face with young children with autism. Lability of mood is also common and is observed in several variations; giggling or weeping for no apparent reason, absence of emotional responses or reaction to danger, excessive fearfulness, or generalized anxiety.1
Self-injurious behaviour, such as head banging and finger or hand biting, are the most extreme and frightening of the behaviour accompanying autism. These occur in less than 10% of the population but can be the most difficult to control or remediate. In their most extreme form these behaviours requiring hospitalisation.1
DECLARATION OF THE PROBLEM
Although age of onset is no longer a diagnostic criterion, autism begins early in life (almost always before 3 and rarely before 5). Most children with autism show signs of the disability from birth though there are some cases where early normal development is followed by a deterioration of social, cognitive, behaviour and communication skills. In these instances deterioration following normal language development is usually the first indication of the problem.6
Recent evidence that the prevalence of diagnosed ASD may be increasing and that early diagnosis and intervention are likely associated with better long term outcomes has made it imperative that Paediatricians increase their fund of knowledge regarding the disorder. Changes in diagnostic criteria and classification systems may at least in part have contributed to the reported increased rates of ASD in epidemiological research Earlier studies (Fombonne et al) estimated the prevalence of autism to be 13 in 10 000 persons. However, Bird et al studying a large cohort of 9-10-years-old children, estimated the total prevalence of ASD to be 116.1 per 10 000, that is, approximately 1% of the child population. Currently, there are no data available for African population; however if the conservative rates apply. Paediatricians can now expect to care for at least 1 child with autism. The apparent increase may represent a combination of several factors, including changing criteria with inclusion of milder forms in the spectrum of autism, a higher public and professional recognition of the disorder, and a true rise in prevalence.6
Although a group of researchers in UK has hypothesized that the administration of measles-mumps-rubella (MMR) vaccine was associated with an increased risk of ASD, this hypothesis has not been substantiated by more in-depth research .In addition, it is imperative that health professionals and the public realize that congenital rubella can cause autism and that measles and mumps can cause significant disability, including encephalitis.7
The Paediatrician is faced with the challenging task of suspecting an ASD diagnosis as early as possible and implementing a timely plan to achieve the best outcome for the child and the family. In neurodevelopmental disorders such as ASD, where the complex pattern of skills and difficulties may show a variable pattern across setting and over time, the paediatrician’s role within the care pathway is crucial, especially at the time of initial diagnosis and at review of developmental progress and in contributing with colleagues to the identification of onset of new disorders.8
Early diagnosis of ASD is challenging in the context of primary care visits because there is no pathognomonic sign or laboratory test to detect it. Thus, the physician must take the diagnosis on the basis of the presence or absence of a group of symptoms.
Because ASD is a phenomenological rather than an etiologic disorder, making the diagnosis more challenging. Paediatrician must rely on parent report, clinical judgment, and the ability to recognize criteria-based behaviour, that define ASD.Families are calling on their Paediatricians to guide them through the tunnel of behavioural, educational, psychological, and alternative treatment option available to them.
Research has demonstrated that recurrence rate for isolated ASD in subsequent siblings ranges from 3% to 7% which make early diagnosis is important to ensure timely genetic counselling before the conception of subsequent siblings.9
What can we do to help?
It is possible to take a negative and passive view and say “There are far worse problems in many countries in Africa-starvation, housing, sanitation, water supply and war- so why divert efforts?” Or “There are other problems that can often be helped by simple procedures, and we don’t see much behaviour difficulties around”
There are indeed, many other terrible problems in Africa but behavioural difficulties are so severe disability that every professionals in the field of paediatrics must positively contribute at least through advocacy so as to highlight and cry for help for the resolution of some of the problems that are responsible for the injustices in the distribution of medical care for children in Africa.
H Darrat, Al-Khadra Teaching Hospital, Department of Paediatrics, Tripoli, Libya
A Zeglam, Department of Paediatrics, Tripoli University, Associate Professor of Paediatrics and Child Health, and Consultant Neurodevelopment Paediatrician,
Al-Khadra Teaching Hospital, Tripoli, Libya
Correspondence to: Dr. Adel Zeglam, PO Box 82809, Tripoli, Libya