Why knowledge of causation is important

Mental retardation is a confusing concept. Mentally retarded people have more differences than common features. Developmental delay may appear in different ages and with different degrees of severity in different children. The age and severity vary both between and within different aetiologies. The development of a child can come to a stop or can even regress. There is a multitude of confirmed causes of mental retardation. Single aetiologies are rare and the clinical picture within the same aetiology can vary greatly. It is now possible to detect causes that until recently were unknown. Associated disabilities and chronic diseases are common and modify further the complex interplay of individual and environmental factors.

The factors believed to be related to the incidence and prevalence of mental retardation, such as personal history and gender, the age and the marital status of the parents, the number of siblings, and the living conditions and the social situation of the family, as well as the neighbouring community, vary in persons with mental retardation. Attitudes to disabilities may differ in different families and societies. The permanence of the cognitive impairment is difficult to accept. Insufficient or inadequate information or a prolonged diagnostic process may lead the family or the child to become fearful about the cause of the condition or to try and identify some reason for it. The way is then open for misunderstandings, feelings of guilt, or projections. (D

For the person with mental retardation a confirmed aetiology is the basis of a correct awareness of his or her own disability; the limitations set by the disability and the possibilities for learning and development. The clinical manifestations of some developmental disorders, such as phenylketonuria, galactosaemia, or hypothyroidism can be prevented or arrested by dietary management or hormonal replacement therapy. Knowledge of the prognosis increases awareness of associated disease and disabilities such as sensory impairments, communication disorders, motor and joint problems, epilepsy, and behavioural or psychiatric problems. Thus, aetiology aids the planning of follow-up, rehabilitation, education, and living arrangements. (16) Knowledge of aetiology is particularly important at the time at transition from childhood to adult services, helping to ensure continuity of provision and avoid drop-out.

For the family knowledge of causes helps to dispel wrong beliefs, self-blame, and anxieties. The parents and siblings may change their preconceived ideas about the disability. It helps the parents to adopt appropriate standards for bringing up their child, and for life as an adult. It helps them to become aware of the child's special needs.(l6) Aetiologic diagnosis is the necessary basis of the reliable genetic counselling and helps the parents and siblings in family planning. (49

In society the knowledge of the aetiologies of mental retardation increases the likelihood that its people will adopt positive attitudes toward the disabled. Both the society and its service providers need understanding of the causes of mental retardation, their prevalence, and their prognoses when planning primary prevention, organizing services and education, optimizing environmental factors, or preparing relevant legislation. Society needs experts continuously alert to advances in scientific research to keep this knowledge up to date.

When the causes are unknown, prognosis is uncertain and the planning and provision of the services is difficult. The risks of discontinuities in service provision and of drop-outs increases. Because families have limited information they are more likely to develop wrong beliefs, self-blame, and projections. They have unrealistic expectations about alternative therapies.

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