Stress and social support the burden experienced by the families of autistic children

The purpose of the present research was to examine the stress experienced by families of autistic children and the relationship between this stress and the factors of social support. The participants were 23 parents of autistic children drawn from chapters of the Ontario Society for Autistic Citizens (OSAC) in the Waterloo-Wellington, Windsor, Hamilton, London and Toronto areas. Significant correlations were found between scores on the Objective and Subjective burden scales; between Subjective burden and the Network Density Score; and between Objective burden and the Childhood Autism Rating Scale (CARS). Significant correlations were not found between the social network list and the Network Density Score; the Objective Burden and the Network Density Score; the autistic child’s age and the CARS; and, the Family Environment Scale (FES) and the CARS. Information gleaned from the objective and subjective burden scales indicated that the majority of parents in this sample felt that their autistic children disrupted their daily life on a regular basis primarily in the areas of leisure activities and during domestic and social routines. As well, almost all parents reported feeling depressed and trapped at times; that they worried a great deal about their child; felt a great deal of anxiety about such worries and often felt unable to cope. Many ruminated about the care the autistic child would receive when they died and almost all stated they need additional help in dealing with their child. We were unable to determine from the correlation between the network list and the network density score whether it is denser networks that are more satisfying for our sample size of 22 parents of autistic children, as suggested by Postasnik and Nelson (1984), or whether it is looser networks as suggested by studies dealing with more independent life change groups such as widows and students (Hirsch, 1979; 1980). Data from the Family Environment Scale (FES) indicated that families of autistic children tend to be higher in conflict and organization than families of ‘non-handicapped’ children (Moos, 1974). As well, in this study, a greater emphasis was placed on the ‘moral religious aspect’ of everyday life in regards to autistic children than for Moos (1974) families of non-handicapped children. Information from the CARS scale and the qualitative data reveal a sample of families who view their children in the moderate range of autism and who stick together with the organization, control and fait and/or determination necessary in order to manage an autistic child. The qualitative data revealed the following themes: job and social activity interruptions; disruption in terms of relaxation time; serious lack of outside community programming; feelings of ambivalence (primarily negative) toward professionals in the field of autism; relatives, friends and self support groups were rated as helpful but parents worried about the burden placed on their non-autistic children as well as the future of the autistic child himself. Over 200 parents of autistic children were contacted. However only 23 completed all or part of the questionnaire. While keeping the possibility of sample bias in mind, we found that over 70% of our families had incomes of over $30,000 per year; over 40% of husbands had graduate school educations or better as did almost 40% of all wives surveyed. Further studies examining the socio-economic and educational aspect of such families would prove enlightening. As well, continued research in the area of social networks and social support is needed in order to identify the specific factors needed in order to reduced experienced burden