Journal of Autism and Developmental Disorders

, Volume 44, Issue 12, pp 3033–3044 | Cite as

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

  • Lydia Jones
  • Lorna Goddard
  • Elisabeth L. Hill
  • Lucy A. Henry
  • Laura CraneEmail author
Original Paper


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.


Diagnosis Survey Adults Depression Anxiety 



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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Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Lydia Jones
    • 1
  • Lorna Goddard
    • 1
  • Elisabeth L. Hill
    • 1
  • Lucy A. Henry
    • 2
  • Laura Crane
    • 2
    • 3
    • 4
    Email author
  1. 1.Goldsmiths, University of LondonLondonUK
  2. 2.Language and Communication Sciences DivisionCity University LondonLondonUK
  3. 3.London South Bank UniversityLondonUK
  4. 4.Language and Communication Sciences DivisionCity University LondonLondonUK

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