Changes in mothers' experiences of receiving an autism diagnosis: a contextualized case study

Autism has a unique history. The definition has broadened and changed over time, from an emotional disturbance with psychogenic origins to a neurodevelopmental disability with suspected environmental and genetic origins. Diagnosis occurs later than children born with obvious disabilities such as cerebral palsy or Down syndrome, but earlier than milder, high-incidence disabilities such as dyslexia or attention deficit disorder. Historically, parents have advocated for changes in the way children with autism receive services and how federal funding and educational services are provided. There is often tension between these parents and the medical establishment. There can also be tension between the community of parents and the community of adults who have high functioning autism and Asperger syndrome. Studies have examined individual aspects of autism, from the diagnosis, caring for a child with autism, educational interventions, and genetics to characteristics of the internet community of adults with autism spectrum disorders (ASDs). This study includes interviews with mothers whose children were diagnosed with autism between 1974 and 2004, observations of appointments with developmental pediatricians at which diagnoses were given in 2010, and an analysis of media representations of autism over the same time period. These different data were analyzed together to create a new understanding about the history and present state of autism diagnosis.