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

Tools

Crane, Laura; Chester, James; Goddard, Lorna; Henry, Lucy and Hill, Elisabeth L.. 2016. Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), pp. 153-162. ISSN 1362-3613 [Article]

Preview

Text
Crane et al Autism 2016.pdf - Accepted Version
Available under License Creative Commons Attribution Non-commercial.
Download (441kB) | Preview

Official URL: https://doi.org/10.1177/1362361315573636

Abstract or Description

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 (ASD) for their children. 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 three and a half years from the point at which parents first approached a health professional with their concerns to the confirmation of an ASD 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 amongst parents.

VIDEO ABSTRACT available at https://www.youtube.com/watch?v=Qf46TMu6VYE

Item Type:

Article

Identification Number (DOI):

https://doi.org/10.1177/1362361315573636

Additional Information:

Data reported here included as evidence in an open letter calling on Health Secretary Jeremy Hunt and NHS England Chief Executive Simon Stevens to prioritise autism diagnosis, part of a campaign by the National Autistic Society (NAS) in the UK. (e.g. http://www.autism.org.uk/get-involved/media-centre/news/campaign-success.aspx)

Video abstract available at: https://www.youtube.com/watch?v=Qf46TMu6VYE

This project is discussed in Elisabeth Hill & Laura Crane's piece in The Conversation (7th May 2015) at:
https://theconversation.com/how-long-does-it-take-to-get-an-autism-diagnosis-41049

Keywords:

autism, autism spectrum disorder (ASD), diagnosis, parent, survey, satisfaction, support

Related URLs: