Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom
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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.
KeywordsDiagnosis 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.
- 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
- 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.PubMedCrossRefGoogle 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.Google Scholar
- Crane, L., Chester, J., Goddard, L., Henry, L. A., & Hill, E. L. (in preparation). Experiences of receiving a diagnosis of autism or Asperger syndrome.Google Scholar
- 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.CrossRefGoogle Scholar
- Department of Health. (2010). “Fulfilling and rewarding lives” The strategy for adults with autism in England. London: Department of Health.Google Scholar
- Field, A. P. (2013). Discovering statistics using SPSS (4th ed.). London: SAGE Publications.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.PubMedCrossRefGoogle 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.
- 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.PubMedCrossRefGoogle 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
- 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
- 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.
- UK Parliament. (2009). The Autism act. London: The Stationary Office.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.