Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults
- 40 Downloads
Factors that complicate the process of receiving a medical diagnosis of “autism spectrum disorder” by a qualified professional for autistic adults who were not diagnosed in childhood.
Known prevalence of autism in adults is approximately 1.1%, but this is likely underestimated (Brugha et al. 2016). Experts estimate that as many as 40% of autistics are not diagnosed in childhood (Baron-Cohen et al. 2009). Those at highest risk of being misdiagnosed or not recognized during childhood include females, middle-aged and older adults, and individuals with more subtle traits and without cognitive or language delays.
In general, females are at a disproportionate risk of misdiagnosis, delayed diagnosis, and not receiving a diagnosis compared to males across age groups (Loomes et al. 2017). There are many theories on the causes of missed diagnosis of autism among females. Emerging evidence shows a slightly different clinical presentation of autism among females,...
References and Reading
- Au-Yeung, S. K., Bradley, L., Robertson, A. E., Shaw, R., Baron-Cohen, S., & Cassidy, S. (2018). Experience of mental health diagnosis and perceived misdiagnosis in autistic, possibly autistic and non-autistic adults. Autism, 23(6), 1508–1518. https://doi.org/10.1177/1362361318818167.CrossRefPubMedGoogle Scholar
- Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46(10), 3281–3294. https://doi.org/10.1007/s10803-016-2872-8.CrossRefPubMedPubMedCentralGoogle Scholar
- Baron-Cohen, S., Scott, F. J., Allison, C., Williams, J., Bolton, P., Matthews, F. E., & Brayne, C. (2009). Prevalence of autism-spectrum conditions: UK school-based population study. British Journal of Psychiatry, 194(6), 500–509. https://doi.org/10.1192/bjp.bp.108.059345.CrossRefPubMedGoogle Scholar
- Crane, L., Batty, R., Adeyinka, H., Goddard, L., Henry, L. A., & Hill, E. L. (2018). Autism diagnosis in the United Kingdom: Perspectives of autistic adults, parents and professionals. Journal of Autism and Developmental Disorders, 48(11), 3761–3772. https://doi.org/10.1007/s10803-018-3639-1.CrossRefPubMedPubMedCentralGoogle Scholar
- 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.CrossRefPubMedGoogle Scholar
- Jones, L., Goddard, L., Hill, E. L., Henry, L. A., & Crane, L. (2014). Experiences of receiving a diagnosis of autism spectrum disorder: 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.CrossRefPubMedGoogle Scholar
- Mazurek, M. O., Lu, F., Symecko, H., Butter, E., Bing, N. M., Hundley, R. J., … Handen, B. L. (2017). A prospective study of the concordance of DSM-IV and DSM-5 diagnostic criteria for autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(9), 2783–2794. https://doi.org/10.1007/s10803-017-3200-7.CrossRefGoogle Scholar
- McKenzie, K., Forsyth, K., O’Hare, A., McClure, I., Rutherford, M., Murray, A., & Irvine, L. (2015). Factors influencing waiting times for diagnosis of autism spectrum disorder in children and adults. Research in Developmental Disabilities, 45–46, 300–306. https://doi.org/10.1016/j.ridd.2015.07.033.CrossRefPubMedGoogle Scholar
- Schuck, R. K., Flores, R. E., & Fung, L. K. (2019). Brief report: Sex/gender differences in symptomology and camouflaging in adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 49(6), 2597–2604. https://doi.org/10.1007/s10803-019-03998-y.CrossRefPubMedPubMedCentralGoogle Scholar
- Taylor, I., & Marrable, T. (2011). Access to social care for adults with autistic spectrum conditions. Retrieved from Social Care Institute for Excellence website: http://rgdoi.net/10.13140/RG.2.1.4623.8248
- Vogan, V., Lake, J. K., Tint, A., Weiss, J. A., & Lunsky, Y. (2017). Tracking health care service use and the experiences of adults with autism spectrum disorder without intellectual disability: A longitudinal study of service rates, barriers and satisfaction. Disability and Health Journal, 10(2), 264–270. https://doi.org/10.1016/j.dhjo.2016.11.002.CrossRefPubMedGoogle Scholar
- Wigham, S., Rodgers, J., Berney, T., Le Couteur, A., Ingham, B., & Parr, J. R. (2018). Psychometric properties of questionnaires and diagnostic measures for autism spectrum disorders in adults: A systematic review. Autism, 23(2), 287–305. https://doi.org/10.1177/1362361317748245.CrossRefPubMedGoogle Scholar
- World Health Organization. (2018, April 2). Autism spectrum disorders. Retrieved from World Health Organization website: https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders