Living with autism : the effects of autism on adolescent siblings

Abstract

Many of the siblings of people with autism suffer due to their siblings' autism. They are often given less attention than their autistic sibling and end up acting above their age, since the majority of them end up growing fast. Many tend to be very independent, responsible and mature, but these are positive effects of autism. However others tend to be negatively affected and end up being bullied at school and experience feelings such as sadness, anger, feeling rejected and lonely. For this purpose, the main aim of this study is to examine the effects of autism on adolescent siblings. The research study was conducted using triangulation but mainly qualitative methodology. This consisted of qualitative interviews with the siblings, their mothers, and one person having a significance importance in the siblings' lives, using interview guides. Three brothers and three sisters varying between the ages of thirteen to sixteen were chosen as participants. Four interviews with the siblings were conducted, one with their mothers and one with an outsider. During the interviews siblings' and parents' consent were obtained to audio record the interviews and to interview and outsider. A focus group was also done with five parents of autistic people to see whether siblings are given importance and attention. The quantitative part included the distribution of questionnaires to the siblings' relatives and questions focused on the siblings. The main aim for this was to see whether relatives and outsiders know the siblings well and the siblings' and mothers' interviews were compared to the questionnaires to see whether answers matched. Together with all participants, we discussed the siblings' lives and from all the interviews I concluded whether autism affects their lives and in what ways. The recording of the first two interviews with the siblings and one with their mothers where then transcribed and analysed using line-by-line coding. A meaning unit was assigned to each sentence and eventually these meaning units where grouped together into themes. Some of the major themes which emerged are the following: Family Relationship with friends Feelings and emotions School and education These themes were developed further and were presented using a narrative approach. Within each theme quotations from the six siblings and their mothers were included, together with quotations from the parents of the focus group, from outsiders interviewed and results from the questionnaires presented in pie charts. These quotations will give the reader a realisation of the siblings' experience on having an autistic brother or sister. Some of the material provided by the respondents was also supported by literature. An identifiable link was established between having an autistic sibling and experiencing certain feelings and emotions. An interesting observation that I made was that siblings from my sample tend to hide their true feelings and tend to go through certain emotions related to them having an autistic sibling. Thus it was concluded that autism does have an effect on the siblings' lives, and whether the effects are positive or negative, the siblings tend to mould their lives around their brother's or sister's autism.