Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom

Abstract

A total of 128 adults with high-functioning autism spectrum disorders were surveyed concerning the process they went through to obtain their diagnosis and the subsequent support they received. Results suggested that routes to diagnosis were quite heterogeneous and overall levels of satisfaction with the diagnostic process were mixed; 40 % of respondents were ‘very/quite’ dissatisfied, whilst 47 % were ‘very/quite’ satisfied. The extent of delays, number of professionals seen, quality of information given at diagnosis and levels of post-diagnostic support predicted overall satisfaction with the diagnostic process. Important areas and suggestions for improvement were noted for all stages of the diagnostic pathway. Respondents also displayed above average levels of depressed mood and anxiety, with greater support being requested in this area.

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Notes

  1. 1.

    This is lower than expected, based on previous research showing ASDs are 3–4 times more common in males (Chakrabati and Fombonne 2001). However other research looking at high-functioning adults has found the gender ratio to be slightly reduced (Baron-Cohen and Wheelwright 2004; Griffith et al. 2012). This may be because more high-functioning women are diagnosed later in life, as girls tend to be more effective at developing coping strategies to mask their ASDs (Ashton-Smith and Gould 2011). It may also reflect the fact that more women engage in the support services through which the survey was advertised.

  2. 2.

    GCSE refers to General Certificate of Secondary Education and are qualifications studied for by 14–16 year olds, just before finishing compulsory education in the UK. A level refers to advanced level, which is a qualification gained in the UK, typically by studying a restricted number of subjects more intensively for a 2 years period (usually at the age of 16–18). It is often used to gain entry to University level courses.

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Acknowledgments

The research presented in this article was funded by a Small Grant from the British Academy (SG112070). We would like to thank all who generously gave their time to participate in this study, as well as those who kindly publicised our requests for volunteers.

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Correspondence to Laura Crane.

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Jones, L., Goddard, L., Hill, E.L. et al. Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom. J Autism Dev Disord 44, 3033–3044 (2014). https://doi.org/10.1007/s10803-014-2161-3

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Keywords

  • Diagnosis
  • Survey
  • Adults
  • Depression
  • Anxiety