Parents as experts: autism and planning the future

The purpose of this research is to explore how parents of children with autism plan the future of their child. In the literature review, I discuss historical perspectives and current perspectives about autism, disability and stigma, and the ways in which parental concerns and struggles play a significant role in planning the future of a child with autism. With the Human Rights Model as a foundation for a theoretical framework, this research project is based on open ended interviews with four research participants. Interviews produced two major themes. The first theme concerns parental worries such as lack of power to help children with autism and concerns about their child’s need for care and support. The second theme relates to barriers such as late diagnosis, professional language, and financial resources. In summary, the results of the interviews indicate that all participants believed in the importance of planning. The implications of this research are that planning the future for children with autism looks different for each parent given that each person with autism is unique, and every family’s experience is different.