'Too normal to be different, too different to be normal' Social support needs of parents who have a child with high functioning autism

The aim of the study was to explore and describe the social support needs of parents living with a child with high functioning Autism (HFA) or Asperger's Syndrome in Prince Edward Island (PEI). Parents in PEI who have children who have been diagnosed with HFA may experience geographical and social inequities that exclude them from the social support that they require to effectively manage their child's disorder. The study was based on the premise that parents who have children with HFA require unique and specific supports. Living in PEI means these parents may not have access to supports for autism found in other provinces. The supports available to all children with autism in PEI are limited. Because their needs are often perceived as less than parents of children with low functioning autism, the available supports are prioritized to parents with children who have low functioning autism; therefore, the support provided to parents of children with HFA may be inadequate to meet their needs. The study design is based on a qualitative interpretative description methodology. Eight parents were recruited to participate in semi-structured interviews (four mothers and four fathers). Following the individual interviews parents were asked to participate in a group interview to validate the individual interview findings.;Several themes emerged from the data. In all cases parents lacked emotional, instrumental, informational and affirmational types of support. Parents struggled with the diagnosis experience, finding it difficult to get their children diagnosed and difficult to obtain information about autism following the diagnosis. Following the diagnosis experience, parents assumed parental roles that were unique to parenting a child with special needs (such as parent as researcher, therapist, advocate). For the most part, these roles were done without any formal support. Parents faced many challenges, such as parenting a child with an "invisable disability". Because their child looked "normal" parents were often made to feel as though they were "bad parents" when their children displayed unusual or bad behaviour. Many of the findings from the study pointed to the fact that these parents and their children represented a vulnerable population. The findings from this research may be used to guide the development of future social support interventions for parents of children with HFA, and possibly further research on this topic.