Aims The purpose of this study was to investigate how families who have multiple autistic children function.
Methods 11 families were recruited and included in the study. The number of children per family varied between two and six, with up to four autistic children in a family. Married, single parent, and non married partnerships were sampled. 44 semi-structured interviews were untaken with mothers, fathers, children with autism and their siblings. These were transcribed and analysed using Grounded Theory. A selection of transcripts was read by another researcher and the findings were sent to families for checking.
Results A variety of themes emerged from the data, including the use of practical strategies to reduce behavioural problems, the place of emotions in coping, the use of statutory and other services and the views of verbal autistic children and their siblings. A theoretical model encompassing the families’ views of their children as normal was developed and highlighted that families dislike being pitied and pathologised by the non-autistic world. A surprising finding was that families with several autistic children in large families found coping easier, as they were more able to normalise the autistic children. Although several different types of emotions were expressed at the time of the diagnosis, there was also an overwhelming sense of relief. All of the families found there were several positive attributes to caring for autistic children. A small minority of families had very negative experiences and the reasons for these are discussed in my presentation.
Conclusions Families rely mainly on their own internal family members for support, including grandparents, rather than on outside services. The Early Bird parent support scheme received high praise, with more criticism for education, social care and some health services. The main advice for newly diagnosed families was to treat your children as normal as much as possible, and to plan your day and activities ahead.