Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom

Autism. 2016 Feb;20(2):153-62. doi: 10.1177/1362361315573636. Epub 2015 Mar 25.


A sample of 1047 parents completed an online survey about their experiences and opinions regarding the process of attaining a diagnosis of autism spectrum disorder for their children. The results revealed that parents usually waited a year from when they first had concerns about their child's development before they sought professional help. On average, there was a delay of around 3.5 years from the point at which parents first approached a health professional with their concerns to the confirmation of an autism spectrum disorder diagnosis. Just over half of the parents surveyed were dissatisfied with the diagnostic process as a whole. Several factors predicted parents' overall levels of satisfaction with the diagnostic process, including the time taken to receive a diagnosis, satisfaction with the information provided at diagnosis, the manner of the diagnosing professional, the stress associated with the diagnostic process and satisfaction with post-diagnostic support. Post-diagnosis, the support (if any) that was provided to parents was deemed unsatisfactory, and this was highlighted as an area of particular concern among parents.

Keywords: autism; autism spectrum disorder; diagnosis; parent; satisfaction; support; survey.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Autistic Disorder / diagnosis*
  • Autistic Disorder / psychology
  • Child
  • Child, Preschool
  • Female
  • Humans
  • Male
  • Parents / psychology*
  • Patient Satisfaction / statistics & numerical data*
  • Surveys and Questionnaires
  • United Kingdom