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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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.
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.
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders text revision (DSM-IV-TR). Washington, DC: American Psychiatric Association.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders—5 (DSM-5). Washington, DC: American Psychiatric Association.
Ashton-Smith, J., & Gould, J. (2011). Autism spectrum disorder and girls. Middletown: Centre for Autism.
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.
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.
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.
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.
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.
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.
Brogan, C., & Knussen, C. (2003). The disclosure of a diagnosis of an autistic spectrum disorder. Autism, 7(1), 31–46. doi:10.1177/1362361303007001004.
Buxbaum, J., & Baron-Cohen, S. (2013). DSM-5: the debate continues. Molecular Autism, 4, 11. doi:10.1186/2040-2392-4-11.
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.
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.
Cohen, J. (1988). Statistical power analysis for the behavioural sciences. Hillsdale, NJ: Lawrence Erlbaum Associates.
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.
Department of Health. (2010). “Fulfilling and rewarding lives” The strategy for adults with autism in England. London: Department of Health.
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.
Field, A. P. (2013). Discovering statistics using SPSS (4th ed.). London: SAGE Publications.
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.
Ghaziuddin, M., & Zafar, S. (2008). Psychiatric comorbidity of adults with autism spectrum disorders. Clinical Neuropsychiatry, 5(1), 9–12.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Knapp, M., Romeo, R., & Beecham, J. (2007). The economic consequences of Autism in the UK. London: Foundation for People with Learning Disabilities.
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.
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.
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.
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.
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.
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.
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.
National Autistic Society. (2001). Ignored or Ineligible? The reality for adults with autism spectrum disorders. London: The National Autistic Society.
National Autistic Society. (2008). I Exist: The message from adults with autism in England. London: The National Autistic Society.
National Autistic Society. (2012). The way we are: autism in 2012. London: The National Autistic Society.
National Institute of Clinical Excellence. (2012). Autism: recognition, referral, diagnosis and management of adults on the autism spectrum. London: National Institute of Clinical Excellence.
Osbourne, L., & Reed, P. (2008). Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism, 12, 309–324. doi:10.1177/1362361307089517.
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.
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.
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.
Renty, J., & Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder. Autism, 10, 511–524. doi:10.1177/1362361306066604.
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.
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.
Tantam, D. (2000). Psychological disorder in adolescents and adults with Asperger syndrome. Autism, 4, 47–62. doi:10.1177/1362361300004001004.
UK Parliament. (2009). The Autism act. London: The Stationary Office.
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.
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.
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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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