Skip to main content
Log in

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

  • Original Paper
  • Published:
Journal of Autism and Developmental Disorders Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Notes

  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. 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.

References

  • American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders text revision (DSM-IV-TR). Washington, DC: American Psychiatric Association.

    Book  Google Scholar 

  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders—5 (DSM-5). Washington, DC: American Psychiatric Association.

    Google Scholar 

  • Ashton-Smith, J., & Gould, J. (2011). Autism spectrum disorder and girls. Middletown: Centre for Autism.

    Google Scholar 

  • Balfe, M., & Tantam, D. (2010). A descriptive social and health profile of a community sample of adults and adolescents with Asperger syndrome. BMC Research Notes, 3(300), 1–7. doi:10.1186/1756-0500-3-300.

    Google Scholar 

  • Baron-Cohen, S., & Wheelwright, S. (2004). The empathy quotient: An investigation of adults with Asperger syndrome or high functioning autism, and normal sex differences. Journal of Autism and Developmental Disorders, 34(2), 163–175. doi:10.1023/B:JADD.0000022607.19833.00.

  • Baron-Cohen, S., Wheelwright, S., Skinner, R., Martin, J., & Clubley, E. (2001). The Autism Spectrum Quotient (AQ): Evidence from Asperger syndrome/high-functioning autism, males and females, scientists and mathematicians. Journal of Autism and Developmental Disorders, 31, 5–17. doi:10.1023/A:1005653411471.

    Article  PubMed  Google Scholar 

  • Beck, A., Epstein, N., Brown, G., & Steer, A. (1988a). An inventory for measuring clinical anxiety: Psychometric properties. Journal of Consulting and Clinical Psychology, 56, 893–897. doi:10.1037/0022-006X.56.6.893.

    Article  PubMed  Google Scholar 

  • Beck, A., Steer, R., & Carbin, M. (1988b). Psychometric properties of the Beck Depression Inventory: Twenty-five years of evaluation. Clinical Psychology Review, 8, 77–100. doi:10.1016/0272-7358(88)90050-5.

    Article  Google Scholar 

  • Bellini, S. (2004). Social skill deficits and anxiety in high-functioning adolescents with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 19(2), 78–86. doi:10.1177/10883576040190020201.

    Article  Google Scholar 

  • Berthoz, S., Lalanne, C., Crane, L., & Hill, E. L. (2013). Investigating emotional impairments in adults with autism spectrum disorders and the broader autism phenotype. Psychiatry Research, 208(3), 257–264. doi:10.1016/j.psychres.2013.05.014.

    Article  PubMed  Google Scholar 

  • Brogan, C., & Knussen, C. (2003). The disclosure of a diagnosis of an autistic spectrum disorder. Autism, 7(1), 31–46. doi:10.1177/1362361303007001004.

    Article  PubMed  Google Scholar 

  • Buxbaum, J., & Baron-Cohen, S. (2013). DSM-5: the debate continues. Molecular Autism, 4, 11. doi:10.1186/2040-2392-4-11.

    Article  PubMed Central  PubMed  Google Scholar 

  • Calzada, L., Pistrang, N., & Mandy, W. (2012). High-functioning autism and Asperger’s disorder: utility and meaning for families. Journal of Autism and Developmental Disorders, 42(2), 230–243. doi:10.1007/s10803-011-1238-5.

    Article  Google Scholar 

  • Chakrabati, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. Journal of the American Medical Association, 285, 3093–3099. doi:10.1001/jama.285.24.3093.

    Article  Google Scholar 

  • Cohen, J. (1988). Statistical power analysis for the behavioural sciences. Hillsdale, NJ: Lawrence Erlbaum Associates.

    Google Scholar 

  • Crane, L., Chester, J., Goddard, L., Henry, L. A., & Hill, E. L. (submitted). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism: The International Journal of Research and Practice.

  • Crane, L., Chester, J., Goddard, L., Henry, L. A., & Hill, E. L. (in preparation). Experiences of receiving a diagnosis of autism or Asperger syndrome.

  • Crane, L., Goddard, L., & Pring, L. (2013). Autobiographical memory in adults with autism spectrum disorder: The role of depressed mood, rumination, working memory and theory of mind. Autism: The International Journal of Research and Practice, 17(2), 205–219. doi:10.1177/1362361311418690.

    Article  Google Scholar 

  • Department of Health. (2010). “Fulfilling and rewarding lives” The strategy for adults with autism in England. London: Department of Health.

    Google Scholar 

  • Dossetor, D. (2007). ‘All That Glitters Is Not Gold’: Misdiagnosis of psychosis in pervasive developmental disorders—A case series. Clinical Child Psychology and Psychiatry, 12(4), 537–548. doi:10.1177/1359104507078476.

    Article  PubMed  Google Scholar 

  • Field, A. P. (2013). Discovering statistics using SPSS (4th ed.). London: SAGE Publications.

    Google Scholar 

  • Geurts, H., & Jansen, M. (2011). A retrospective chart study: The pathway to diagnosis for adults referred for ASD assessment. Autism: The International Journal of Research and Practice, 16(3), 299–305. doi:10.1177/1362361311421775.

    Article  Google Scholar 

  • Ghaziuddin, M., & Zafar, S. (2008). Psychiatric comorbidity of adults with autism spectrum disorders. Clinical Neuropsychiatry, 5(1), 9–12.

    Google Scholar 

  • Goddard, L., Dritschel, B., Robinson, S., & Howlin, P. (2014). Development of autobiographical memory in children with an autism spectrum disorder: Deficits, gains and predictors of performance. Development and Psychopathology, 26(1), 215–228. doi:10.1017/S0954579413000904.

    Article  PubMed  Google Scholar 

  • Griffith, G., Totsika, V., Nash, S., & Hastings, R. (2012). ‘I just don’t fit anywhere’: support experiences and future support needs of individuals with Asperger syndrome in middle adulthood. Autism, 16(5), 532–546. doi:10.1177/1362361311405223.

    Article  PubMed  Google Scholar 

  • Hasnat, M., & Graves, P. (2000). Disclosure of developmental disability: A study of parent satisfaction and the determinants of satisfaction. Journal of Paediatrics and Child Health, 36, 32–35. doi:10.1046/j.1440-1754.2000.00463.x.

    Article  PubMed  Google Scholar 

  • Howlin, P. (2003). Outcome in high-functioning adults with autism with and without early language delays: Implications for the differentiation between autism and Asperger syndrome. Journal of Autism and Developmental, 33(1), 3–13. doi:10.1023/A:1022270118899.

  • Howlin, P. (2008). Redressing the balance in autism research. Nature Clinical Practice Neurology, 4(8), 407. doi:10.1038/ncpneuro0860.

    Article  PubMed  Google Scholar 

  • Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and Asperger syndrome: findings from a survey of 770 families. Developmental Medicine and Child Neurology, 41(6), 834–839. doi:10.1111/j.1469-8749.1999.tb00550.x.

    Article  PubMed  Google Scholar 

  • Howlin, P., & Moore, A. (1997). Diagnosis in Autism: A survey of over 1200 patients in the UK. Autism, 1(4), 135–162. doi:10.1177/1362361397012003.

    Article  Google Scholar 

  • Hurlbutt, K., & Chalmers, L. (2002). Adults with autism speak out: perceptions of their life experiences. Focus on Autism and other Developmental Disabilities, 17(2), 103–111. doi:10.1177/10883576020170020501.

    Article  Google Scholar 

  • Huws, J., & Jones, R. (2008). Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism. Journal of Intellectual and Developmental Disability, 33(2), 99–107. doi:10.1080/13668250802010394.

    Article  PubMed  Google Scholar 

  • Jones, R., Zahl, A., & Huws, J. (2001). First-hand accounts of emotional experiences in autism: A qualitative analysis. Disability & Society, 16, 393–401. doi:10.1080/09687590120045950.

    Article  Google Scholar 

  • Knapp, M., Romeo, R., & Beecham, J. (2007). The economic consequences of Autism in the UK. London: Foundation for People with Learning Disabilities.

    Google Scholar 

  • Lehnhardt, F., Gawronski, A., Volpert, K., Schilbach, L., Tepest, R., Vogeley, K., et al. (2012). Psychosocial functioning of adults with late diagnosed autism spectrum disorders—a retrospective study. Fortschritte der Neurologie-Psychiatrie, 80(2), 88–97. doi:10.1055/s-0031-1281642.

    Article  PubMed  Google Scholar 

  • Macintosh, K., & Dissanayake, C. (2004). The similarities and differences between autistic disorder and Asperger’s disorder: a review of the empirical evidence. Journal of Child Psychology and Psychiatry, 45(5), 421–434. doi:10.1111/j.1469-7610.2004.00234.x.

    Article  PubMed  Google Scholar 

  • Mansell, W., & Morris, K. (2004). A survey of parents’ reactions to the diagnosis of an autistic spectrum disorder by a local service: Access to information and use of services. Autism, 8, 387–407. doi:10.1177/1362361304045213.

    Article  PubMed  Google Scholar 

  • Maras, K. L., Memon, A., Lambrechts, A., & Bowler, D. M. (2013). Recall of a live and personally experienced eyewitness event by adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(8), 1798–1810. doi:10.1007/s10803-012-1729-z.

    Article  PubMed  Google Scholar 

  • McCrory, E., Henry, L. A., & Happé, F. (2007). Eye-witness memory and suggestibility in children with Asperger syndrome. Journal of Child Psychology and Psychiatry and Allied Disciplines, 48(5), 482–489. doi:10.1111/j.1469-7610.2006.01715.x.

    Article  Google Scholar 

  • Midence, K., & O’Neill, M. (1999). The experience of parents in the diagnosis of autism: A pilot study. Autism, 3(3), 273–285. doi:10.1177/1362361399003003005.

    Article  Google Scholar 

  • Milton, D., Pellicano, E., & Mills, R. (2012). Ethics and Autism: Where is the autistic voice? Commentary on Post et al. Journal of Autism and Developmental Disorders. doi:10.1007/s10803-012-1739-x.

  • National Audit Office. (2009). Supporting people with autism through adulthood. London: Stationary Office.

    Google Scholar 

  • National Autistic Society. (2001). Ignored or Ineligible? The reality for adults with autism spectrum disorders. London: The National Autistic Society.

    Google Scholar 

  • National Autistic Society. (2008). I Exist: The message from adults with autism in England. London: The National Autistic Society.

    Google Scholar 

  • National Autistic Society. (2012). The way we are: autism in 2012. London: The National Autistic Society.

    Google Scholar 

  • National Institute of Clinical Excellence. (2012). Autism: recognition, referral, diagnosis and management of adults on the autism spectrum. London: National Institute of Clinical Excellence.

    Google Scholar 

  • Osbourne, L., & Reed, P. (2008). Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism, 12, 309–324. doi:10.1177/1362361307089517.

    Article  Google Scholar 

  • Oslejskova, H., Kontrova, I., Foralova, R., Dusek, L., & Nemethova, D. (2007). The course of diagnosis in autistic patients: The delay between recognition of the first symptoms by parents and correct diagnosis. Neuroendocrinology Letter, 28, 895–900.

    Google Scholar 

  • Ozonoff, S., South, M., & Miller, J. N. (2000). DSM-IV-defined Asperger syndrome: cognitive, behavioral and early history differentiation from high-functioning autism. Autism, 4(1), 29–46. doi:10.1177/1362361300041003.

    Google Scholar 

  • Punshon, C., Skirrow, P., & Murphy, G. (2009). The ‘not guilty verdict’: Psychological reactions to a diagnosis of Asperger syndrome in adulthood. Autism, 13(3), 265–283. doi:10.1177/1362361309103795.

    Article  PubMed  Google Scholar 

  • Renty, J., & Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder. Autism, 10, 511–524. doi:10.1177/1362361306066604.

    Article  PubMed  Google Scholar 

  • Roux, A. M., Shattuck, P. T., Cooper, B. P., Anderson, K. A., Wagner, M., & Narendorf, S. C. (2013). Postsecondary employment experiences among young adults with an autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 52(9), 931–939. doi:10.1016/j.jaac.2013.05.019.

  • Siklos, S., & Kerns, K. (2007). Assessing the diagnostic experiences of a small sample of parents of children with autism spectrum disorders. Research in Developmental Disabilities, 28(1), 9–22. doi:10.1016/j.ridd.2005.09.003.

    Article  PubMed  Google Scholar 

  • Smith, B., Chung, M., & Vostanis, P. (1994). The path to care in autism: Is it better now? Journal of Autism and Developmental Disorders, 24(5), 551–563. doi:10.1007/BF02172137.

    Article  PubMed  Google Scholar 

  • Tantam, D. (2000). Psychological disorder in adolescents and adults with Asperger syndrome. Autism, 4, 47–62. doi:10.1177/1362361300004001004.

    Article  Google Scholar 

  • UK Parliament. (2009). The Autism act. London: The Stationary Office.

    Google Scholar 

  • White, S., Hill, E., Winston, J., & Frith, U. (2006). An islet of social ability in Asperger syndrom: Judging social attributes from faces. Brain and Cognition, 61, 69–77. doi:10.1016/j.bandc.2005.12.007.

    Article  PubMed  Google Scholar 

  • Wolff, S., & McGuire, R. (1995). Schizoid personality in girls: A follow-up study – What are the links with Asperger’s syndrome? Journal of Child Psychology and Psychiatry, 36(5), 793–817. doi:10.1111/j.1469-7610.1995.tb01330.x.

Download references

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.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Laura Crane.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

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

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10803-014-2161-3

Keywords

Navigation