Swipe om te navigeren naar een ander artikel
Accessing an autism diagnosis is a key milestone, both for an individual and their family. Using a qualitative methodology, the current study examined the views and experiences of ten autistic adults, ten parents of children on the autism spectrum, and ten professionals involved in autism diagnosis, all based in the United Kingdom (UK). Interviewing these 30 respondents about the diagnostic process and subsequent support options, the goal was to identify aspects of the diagnostic process that are working well, and areas in which improvements are needed. Using thematic analysis, three key themes were identified: the process of understanding and accepting autism; multiple barriers to satisfaction with the diagnostic process; and inadequate post-diagnostic support provision.
Begeer, S., Mandell, D. M., Wijnker-Holmes, B., Venderbosch, S., Rem, D., Stekelenburg, F., & Koot, H. M. (2013). Sex differences in the timing of identification among children and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(5), 1151–1156. https://doi.org/10.1007/s10803-012-1656-z. CrossRefPubMed
Carlsson, E., Miniscalo, C., Kadesjö, B., & Laakso, K. (2016). Negotiating knowledge: Parents’ experience of the neuropsychatric diagnostic process for children with autism. International Journal of Language & Communication Disorders, 51(3), 328–338. https://doi.org/10.1111/1460-6984.12210. CrossRef
de Clercq, H., & Peeters, T. (2007). A partnership between parents and professionals. In J. M. Pérez, M. González, M. L. Comí & C. Nieto (Eds.), New developments in autism: The future is today (pp. 310–340). London: Jessica Kingsley Publishers.
Dillenburger, K., Jordan, J. A., McKerr, L., Devine, P., & Keenan, M. (2013). Awareness and knowledge of autism and autism interventions: A general population survey. Research in Autism Spectrum Disorders, 7(12), 1558–1567. https://doi.org/10.1016/j.rasd.2013.09.004. CrossRef
Foley, K., Pollack, A. J., Britt, H. C., Lennox, N. G., & Troller, J. N. (2017). General practice encounters for young patients with autism spectrum disorder in Australia. Autism: The International Journal of Research and Practice. https://doi.org/10.1177/1362361317702560. ( Online First). CrossRef
Fox, F., Aabe, N., Turner, K., Redwood, S., & Rai, D. (2017). It was like walking without knowing where I was going”: A qualitative study of autism in a UK somali migrant community. Journal of Autism and Developmental Disorders, 47(2), 305–315. https://doi.org/10.1007/s10803-016-2952-9. CrossRefPubMed
Gould, J., & Ashton-Smith, J. (2011). Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum. Good Autism Practice, 12(1), 34–41.
Happé, F. G., Mansour, H., Barrett, P., Brown, T., Abbott, P., & Charlton, R. A. (2016). Demographic and cognitive profile of individuals seeking a diagnosis of autism spectrum disorder in adulthood. Journal of Autism and Developmental Disorders, 46(11), 3469–3480. https://doi.org/10.1007/s10803-016-2886-2. CrossRefPubMed
Hearst, C. (Ed.). (2015). Being Autistic: Nine adults share their journeys from discovery to acceptance. AutAngel CIC.
Jones, L., Goddard, L., Hill, E. L., Henry, L. A., & Crane, L. (2014). Experiences of receiving an autism spectrum disorder diagnosis: A survey of adults in the United Kingdom. Journal of Autism and Developmental Disorders, 44(12), 3033–3044. https://doi.org/10.1007/s10803-014-2161-3. CrossRefPubMed
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism: The International Journal of Research and Practice, 20(4), 442–462. https://doi.org/10.1177/1362361315588200. CrossRef
Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the male-to-female ratio in Autism Spectrum Disorder? A systematic review and meta-analysis. Journal of the American Academy of Child and Adolescent Psychiatry, 56(6), 466–474. https://doi.org/10.1016/j.jaac.2017.03.013. CrossRefPubMed
Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bishop, S. (2012). Autism diagnostic observation schedule, second edition (ADOS-2) manual. Torrance, CA: Western Psychological Services.
Mandell, D. S., Listerud, J., Levy, S. E., & Pinto-Martin, J. A. (2002). Race differences in the age at diagnosis among medicaid-eligible children with autism. Journal of the American Academy of Child and Adolescent Psychiatry, 41(12), 1447–1453. https://doi.org/10.1097/00004583-200212000-00016. CrossRefPubMed
McKenzie, K., Forsyth, K., O’Hare, A., McClure, I., Rutherford, M., Murray, A., & Irvine, L. (2016). The relationship between waiting times and ‘adherence’ to the Scottish Intercollegiate Guidelines Network 98 guideline in autism spectrum disorder diagnostic services in Scotland. Autism, 20(4), 395–401. https://doi.org/10.1177/1362361315586136. CrossRefPubMed
National Autistic Society. (2012). The way we are: Autism in 2012. London: The National Autistic Society.
National Institute of Clinical Excellence. (2011). Autism: Recognition, referral and diagnosis of children and young people on the autism spectrum. CG128. London: National Institute of Clinical Excellence.
National Institute of Clinical Excellence. (2012). Autism: Recognition, referral, diagnosis and management of adults on the autism spectrum. CG142. London: National Institute of Clinical Excellence.
Nicolaidis, C., Kripke, C. C., & Raymaker, D. (2014). Primary care for adults on the autism spectrum. Medical Clinics of North America, 98(5), 1169–1191. https://doi.org/10.1016/j.mcna.2014.06.011. CrossRefPubMed
Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E., Kapp, S. K., Weiner, M., & Boisclair, W. C. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism: The International Journal of Research and Practice, 19(7), 824–831. https://doi.org/10.1177/1362361315576221. CrossRef
Rogers, C., Goddard, L., Hill, E. L., Henry, L. A., & Crane, L. (2016). Experiences of diagnosing autism spectrum disorder: A survey of professionals in the United Kingdom. Autism: The International Journal of Research and Practice, 20(7), 820–831. https://doi.org/10.1177/1362361315611109. CrossRef
Rosenthal, R., & Rosnow, R. L. (1975). The volunteer subject. New York: Wiley.
Russell, A. J., Murphy, C. M., Wilson, E., Gillan, N., Brown, C., Robertson, D. M., Craig, M. C., Deeley, Q., Zinkstok, J., Johnston, K., McAlonan, G. M., Spain, D., & Murphy, D. G. M. (2016). The mental health of individuals referred for assessment of autism spectrum disorder in adulthood: A clinic report. Autism: The International Journal of Research and Practice, 20(5), 623–627. https://doi.org/10.1177/1362361315604271. CrossRef
Rutherford, M., McKenzie, K., Forsyth, K., McCartney, D., O’Hare, A., McClure, I., & Irvine, L. (2016). Why are they waiting? Exploring professionals perspectives and developing solutions to delayed diagnosis of autism spectrum disorder in adults and children. Research in Autism Spectrum Disorders, 31, 53–65. https://doi.org/10.1016/j.rasd.2016.06.004. CrossRef
Rutherford, M., McKenzie, K., Johnson, T., Catchpole, C., O’Hare, A., McClure, I., Forsyth, K., McCartney, D., & Murray, A. (2016). Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder. Autism: The International Journal of Research and Practice, 20(5), 628–634. https://doi.org/10.1177/1362361315617879. CrossRef
Rutter, M., LeCouteur, A., & Lord, C. (2003/2008). Autism diagnostic interview–revised. Los Angeles: Western Psychological Services.
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. https://doi.org/10.1016/j.ridd.2005.09.003. CrossRefPubMed
Taylor, L. J., Eapen, V., Maybery, M. T., Midford, S., Paynter, J., Quarmby, L., Smith, T., Williams, K., & Whitehouse, A. J. O. (2016). Diagnostic evaluation for autism spectrum disorder: A survey of health professionals in Australia. British Medical Journal Open, 6, e012517. https://doi.org/10.1136/bmjopen-2016-012517. CrossRef
Wiggins, L. D., Baio, J., & Rice, C. (2006). Examination of the time between first evaluation and first autism spectrum diagnosis in a population-based sample. Journal of Developmental and Behavioural Paediatrics, 27(2), S79–S87. https://doi.org/10.1097/00004703-200604002-00005. CrossRef
Woolley, H., Stein, H., Forrest, G. C., & Baum, J. D. (1989). Imparting the diagnosis of life threatening illness in children. British Medical Journal, 298, 1623–1626. CrossRef
- Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals
Lucy A. Henry
Elisabeth L. Hill
- Springer US