Needs of families

Author: Mr. Pat Matthews (ISA-Dublin.IE)

Introduction

The aim of this course is to investigate the needs of families.  Following a review of the research on autism in the late seventies, McAdoo & DeMyer (1978) suggested that the most fruitful approach to researching family factors in autism would be to focus on the chronic stress felt by families with a family member with autism. This area is investigated in the International Research section as well as the issues pertaining to child development and the associated change in family needs. A considerable amount of research has been conducted in Ireland and the findings of the various research studies are considered in Section 2. The implications of the research for families are summarised in Section 3 followed by an account of gaps in service provision for families in Section 4. The key points are summarised in Section 5.

1 International Research

The literature to date suggests that different factors may impact upon the levels of distress experienced by the parents and families of persons with autism. These include the following:

Stigmatisation

As now believed by most theorists parents are in no sense culpable in the onset of autism yet many still believe that families are responsible for the ‘development’ of autism.  “Families with an autistic member have borne a degree of misunderstanding, blame, conflicting demands, devaluation and loneliness imposed on them by society that typically exceed that borne by other families” (Cutler & Kozloff, 1987). Furthermore, an adult who displays the behavioural anomalies typical of autism will be seen as far less acceptable by society than a young child showing the same problems...

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