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

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]

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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

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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:


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

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25 March 2015Published Online
1 February 2016Published

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Date Deposited:

02 Mar 2015 12:40

Last Modified:

12 Jun 2021 00:37

Peer Reviewed:

Yes, this version has been peer-reviewed.



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