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

Crane, L; Chester, JW; Goddard, L; Henry, LA; Hill, EL; (2016) Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism , 20 (2) pp. 153-162. 10.1177/1362361315573636. Green open access

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Abstract

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.

Type: Article
Title: Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/1362361315573636
Publisher version: https://doi.org/10.1177/1362361315573636
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: autism, autism spectrum disorder, diagnosis, parent, satisfaction, support, survey
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education > IOE - Psychology and Human Development
URI: https://discovery.ucl.ac.uk/id/eprint/1548895
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