Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

17-05-2017 | Original Paper

A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults

Auteur: Laura Foran Lewis

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 8/2017

Abstract

Delayed diagnosis of autism spectrum disorder (ASD) into adulthood is common, and self-diagnosis is a growing phenomenon. This mixed methods study aimed to explore barriers to formal diagnosis of ASD in adults. In a qualitative strand, secondary analysis of data on the experiences of 114 individuals who were self-diagnosed or formally diagnosed with ASD in adulthood was used to identify barriers. In a quantitative strand, 665 individuals who were self-diagnosed or formally diagnosed in adulthood were surveyed online to examine incidence and severity of barriers. Fear of not being believed by professionals was identified as the most frequently occurring and most severe barrier. Professionals must strategize to build trust with individuals with ASD, particularly when examining the accuracy of self-diagnosis.

vorige artikel Exploring the Components of Advanced Theory of Mind in Autism Spectrum Disorder

volgende artikel Touch Processing and Social Behavior in ASD

Bargiela, S., Steward, R., & Mandy, W. (2016). The experience of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism & Developmental Disorders, 46(10), 3281–3294. doi:10.1007/s10803-016-2872-8.CrossRef

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. The British Journal of Psychiatry, 194(6), 500–509. doi:10.1192/bjp.bp.108.059345.CrossRefPubMed

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 & Developmental Disorders, 31(1), 5–17.CrossRef

Brugha, T. S., McManus, S., Bankart, J., Scott, F., Purdon, S., Smith, J., et al. (2011). Epidemiology of autism spectrum disorders in adults in the community in England. Archives of General Psychiatry, 68(5), 459. doi:10.1001/archgenpsychiatry.2011.38.CrossRefPubMed

Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M., & Baron-Cohen, S. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: A clinical cohort study. Lancet Psychiatry, 1(2), 142–147. doi:10.1016/S2215-0366(14)70248-2.CrossRefPubMed

Centers for Disease Control and Prevention [CDC]. (2014). Prevalence of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2010. Morbidity and Mortality Weekly Report, 63(SS02), 1–21.

Christensen, D. L., Baio, J., Van Naarden, K., Bilder, D., Charles, J., Constantino, J. N., et al. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 Sites, United States, 2012. Morbidity and Mortality Weekly Report, 65(3), 1–23. doi:10.15585/mmwr.ss6503a1.

Creswell, J. W., & Plano Clark, V. L. (2011). Designing and conducting mixed methods research (2nd ed.). Los Angeles, CA: Sage.

Dean, M., Harwood, R., & Kasari, C. (2016). The art of camouflage: Gender differences in the social behaviors of girls and boys with autism spectrum disorder. Autism, Special Issue. doi:10.1177/1362361316671845.

Farley, M. A., McMahon, W. M., Fombonne, E., Jenson, W. R., Miller, J., Gardner, M., et al. (2009). Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. Autism Research, 2(2), 109–118. doi:10.1002/aur.69.CrossRefPubMed

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 & Developmental Disorders, 44(12), 3033–3044. doi:10.1007/s10803-014-2161-3.CrossRef

Krippendorff, K. (2013). Content analysis: An introduction to its methodology. Thousand Oaks, CA: Sage.

Lai, M. C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013–1027. doi:10.1016/S2215-0366(15)00277-1.CrossRefPubMed

Lai, M. C., Lombardo, M. V., Pasco, G., Ruigrok, A. N. V., Wheelwright, S. J., Sadek, S. A., … & Baron-Cohen, S. (2011). A behavioral comparison of male and female adults with high functioning autism spectrum conditions. PLoS ONE, 6(6), e20835. doi:10.1371/journal/pone.0020835.CrossRefPubMedPubMedCentral

Lai, M. C., Lombardo, M. V., Ruigrok, A. N. V., Chakrabarti, B., Auyeung, B., Szatmari, P., … & Baron-Cohen, S. (2016). Quantifying and exploring camouflaging in men and women with autism. Autism, Special Issue. doi:10.1177/136236131667012.

Lehnhardt, F. G., Gawronski, A., Pfeiffer, K., Kockler, H., Schilbach, L., & Vogeley, K. (2013). The investigation and differential diagnosis of Asperger syndrome in adults. Deutsches Arzteblatt International, 110(45), 755–763. doi:10.3238/arztebl.2013.0755.PubMedPubMedCentral

Lewis, L. F. (2016a). Realizing a diagnosis of autism spectrum disorder as an adult. International Journal of Mental Health Nursing, 25(4), 346–354. doi:10.1111/inm.12200.CrossRefPubMed

Lewis, L. F. (2016b). Exploring the experience of self-diagnosis of Autism Spectrum Disorder in adults. Archives of Psychiatric Nursing, 30(5), 575–580. doi:10.1016/j.apnu.2016.003.009.CrossRefPubMed

Mayes, S. D., Calhoun, S. L., Murray, M. J., Pearl, A., Black, A., & Tierney, C. D. (2014). Final DSM-5 under-identifies mild autism spectrum disorder: Agreement between the DSM-5, CARS, CASD, and clinical diagnoses. Research in Autism Spectrum Disorders, 8(2), 68–73. doi:10.1016/j.rasd.2013.11.002.CrossRef

Morse, J. M. (2015). Critical analysis of strategies for determining rigor in qualitative inquiry. Qualitative Health Research, 25(9), 1212–1222. doi:10.1177/1049732315588501.CrossRefPubMed

Myhill, G. & Jekel, D. (2008). Asperger marriage: Viewing partnerships thru a different lens. http://www.aane.org/asperger_resources/articles/adults/asperger_marriage.html.

Orsmond, G. I., Shattuck, P. T., Cooper, B. P., Sterzing, P. R., & Anderson, K. A. (2013). Social participation among young adults with an autism spectrum disorder. Journal of Autism & Developmental Disorders, 43(11), 2710–2719. doi:10.1007/s10803-013-0833-8.CrossRef

Portway, S. M., & Johnson, B. (2005). Do you know I have Asperger’s syndrome? Risks of a non-obvious disability. Health, Risk & Society, 7(1), 73–83. doi:10.1080/09500830500042086.CrossRef

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.CrossRefPubMed

Rutherford, M., McKenzie, K., Johnson, T., Catchpole, C., O’Hare, A., McClure, I., et al. (2016). Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder. Autism, 20(5), 628–634. doi:10.1177/1362361315617879.CrossRefPubMed

Ruzich, E., Allison, C., Smith, P., Watson, P., Auyeung, B., Ring, H., & Baron-Cohen, S. (2015). Measuing autistic traits in the general population: A systematic review of the Autism-Spectrum Quotient (AQ) in a nonclinical population sample of 6,900 typical adult males and females. Molecular Autism, 6(2), 1–12. doi:10.1186/2040-2392-6-2.

Rynkiewicz, A., Schuller, B., Marchi, E., Piana, S., Camurri, A., Lassalle, A., & Baron-Cohen, S. (2016). An investigation of the ‘female camouflage effect’ in autism using a computerized ADOS-2 and a test of sex/gender differences. Molecular Autism. doi:10.1186/s13229-016-0073-0.PubMedPubMedCentral

Sarrett, J. C. (2016). Biocertification and neurodiversity: The role and implications of self-diagnosis in Autistic communities. Neuroethics, 9(1), 23–36. doi:10.1007/s12152-016-9247-x.CrossRef

Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J. L. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129(6), 1042–1049. doi:10.1542/peds.2011-2864.CrossRefPubMedPubMedCentral

Spencer, L., Lyketsos, C. G., Samstad, E., Dokey, A., Rostov, D., & Chisolm, M. S. (2011). A suicidal adult in crisis: An unexpected diagnosis of autism spectrum disorder. American Journal of Psychiatry, 168(9), 890–892. doi:10.1176/appi.ajp.2011.10091261.CrossRefPubMed

Sterling, L., Dawson, G., Estes, A., & Greenson, J. (2007). Characteristics associated with presence of depressive symptoms in adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 38(6), 1011–1018. doi:10.1007/s10803-007-0477-y.CrossRefPubMed

Tobin, M. C., Drager, K. D. R., & Richardson, L. F. (2014). A systematic review of social participation for adults with autism spectrum disorders: Support, social functioning, and quality of life. Research in Autism Spectrum Disorders, 8(3), 214–229. doi:10.1016/j.rasd.2013.12.002.CrossRef

Wilson, C. E., Murphy, C. M., McAlonan, G., Robertson, D. M., Spain, D., Hayward, H., et al. (2016). Does sex influence the diagnostic evaluation of autism spectrum disorder in adults? Autism, 20(7), 808–819. doi:10.1177/1362361315611381.CrossRefPubMedPubMedCentral

Woodbury-Smith, M. R., Robinson, J., Wheelwright, S., & Baron-Cohen, S. (2005). Screening adults for Asperger Syndrome using the AQ: A preliminary study of its diagnostic validity in clinical practice. Journal of Autism & Developmental Disorders, 31(1), 5–17. doi:10.1007/s10803-005-3300-7.

Wylie, P. (2014). Very late diagnosis of Asperger syndrome (autism spectrum disorder): How seeking a diagnosis in adulthood can change your life. Philadelphia: Jessica.

Titel: A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults
Auteur: Laura Foran Lewis
Publicatiedatum: 17-05-2017
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 8/2017
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-017-3168-3

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 8/2017

The Flexibility Scale: Development and Preliminary Validation of a Cognitive Flexibility Measure in Children with Autism Spectrum Disorders

Multisensory Integration of Low-level Information in Autism Spectrum Disorder: Measuring Susceptibility to the Flash-Beep Illusion

Autism in Southeast Europe: A Survey of Caregivers of Children with Autism Spectrum Disorders

Differing Developmental Trajectories in Heart Rate Responses to Speech Stimuli in Infants at High and Low Risk for Autism Spectrum Disorder

Isabelle Rapin (1927–2017)

The Role of the Broader Autism Phenotype and Environmental Stressors in the Adjustment of Siblings of Children with Autism Spectrum Disorders in Taiwan and the United Kingdom