Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

28-11-2022 | Brief Report

Brief Report: Learning About Autism: Is the Source of Autism Knowledge Associated with Differences in Autism Knowledge, Autism Identity, and Experiences of Stigma

Auteurs: Simon M. Bury, Alex Haschek, Michael Wenzel, Jennifer R. Spoor, Darren Hedley

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 11/2024

Abstract

People on the autism spectrum can learn about autism from various sources, likely differing in the information, portrayal, and discussion they offer. The present study investigates where autistic people learn about autism, and whether their information source is associated with their level of autism knowledge, perceptions of stigma, and development and expression of an autism identity. A survey of 198 Australian adults with an autism diagnosis showed that learning about autism from conventional sources (e.g., professionals, parents) was associated with more internalised stigma, lower endorsement of special abilities and autism identity, whereas online blogs and social media showed the opposite pattern as well as more accurate knowledge of autism. The findings raise questions about how authoritative sources of information discuss autism.

vorige artikel Micro-Analyses Reveal Increased Parent-Child Positive Affect in Children with Poorer Adaptive Functioning Receiving the ESDM

volgende artikel Correction: Continuation of Pediatric Care after Transfer to Adult Care Among Autistic Youth Overlap of Pediatric and Adult Care

Alleen toegankelijk voor geautoriseerde gebruikers

There is significant variability in preferences for describing autism (Bury et al., 2020). Consistent with the Publication Manual of the American Psychological Association 7th edition, we use both person-first (e.g., person on the autism spectrum) and identity-first (e.g., autistic person) language

Anderberg, E., & South, M. (2021). Predicting parent reactions at diagnostic disclosure sessions for autism. Journal of Autism and Developmental Disorders, 51(10), 3533–3546. https://doi.org/10.1007/s10803-020-04817-5.CrossRefPubMed

Bagatell, N. (2010). From cure to community: Transforming notions of autism. Ethos, 38(1), 33–55. https://doi.org/10.1111/j.1548-1352.2009.01080.x.CrossRef

Bottema-Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2021). Avoiding ableist language: Suggestions for autism researchers. Autism in Adulthood, 3(1), 18–29. https://doi.org/10.1089/aut.2020.0014.CrossRefPubMedPubMedCentral

Brogan, C. A., & Knussen, C. (2003). The disclosure of a diagnosis of an autistic spectrum disorder: Determinants of satisfaction in a sample of Scottish parents. Autism, 7(1), 31–46. https://doi.org/10.1177/1362361303007001004.CrossRefPubMed

Brown, H. M., Stahmer, A. C., Dwyer, P., & Rivera, S. (2021). Changing the story: How diagnosticians can support a neurodiversity perspective from the start. Autism, 25(5), 1171–1174. https://doi.org/10.1177/13623613211001012.CrossRefPubMed

Bury, S. M., Jellett, R., Hascheck, A., Wenzel, M., Hedley, D., & Spoor, J. R. (in press). Understanding language preference: Autism knowledge, experience of stigma, and autism identity. Autism.

Bury, S. M., Jellett, R., Spoor, J. R., & Hedley, D. (2020). “It defines who I am” or “it’s something I have”: What language do [autistic] Australian adults [on the autism spectrum] prefer? Journal of Autism and Developmental Disorders, 1–11. https://doi.org/10.1007/s10803-020-04425-3.

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.CrossRefPubMedPubMedCentral

Crane, L., Davidson, I., Prosser, R., & Pellicano, E. (2019). Understanding psychiatrists’ knowledge, attitudes and experiences in identifying and supporting their patients on the autism spectrum: Online survey. BJPsych Open, 5(3), https://doi.org/10.1192/bjo.2019.12.

Dirth, T. P., & Branscombe, N. R. (2018). The social identity approach to disability: Bridging disability studies and psychological science. Psychological Bulletin, 144(12), 1300–1324. https://doi.org/10.1037/bul0000156.CrossRefPubMed

Geurts, H. M., & Jansen, M. D. (2012). A retrospective chart study: The pathway to a diagnosis for adults referred for ASD assessment. Autism, 16(3), 299–305. https://doi.org/10.1177/1362361311421775.CrossRefPubMed

Gillespie-Lynch, K., Brooks, P. J., Someki, F., Obeid, R., Shane-Simpson, C., Kapp, S. K., Daou, N., & Smith, D. S. (2015). Changing college students’ conceptions of autism: An online training to increase knowledge and decrease stigma. Journal of Autism and Developmental Disorders, 45(8), 2553–2566. https://doi.org/10.1007/s10803-015-2422-9.CrossRefPubMed

Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic adults as critical autism experts. Frontiers in Psychology, 8, 438. https://doi.org/10.3389/fpsyg.2017.00438.CrossRefPubMedPubMedCentral

Harmens, M., Sedgewick, F., & Hobson, H. (2022). The quest for acceptance: A blog-based study of autistic women’s experiences and well-being during autism identification and diagnosis. Autism in Adulthood, 4(1), 42–51. https://doi.org/10.1089/aut.2021.0016.CrossRefPubMedPubMedCentral

Hoekstra, R. A., Vinkhuyzen, A. A., Wheelwright, S., Bartels, M., Boomsma, D. I., Baron-Cohen, S., Posthuma, D., & Van Der Sluis, S. (2011). The construction and validation of an abridged version of the autism-spectrum quotient (AQ-Short). Journal of Autism and Developmental Disorders, 41(5), 589–596. https://doi.org/10.1007/s10803-010-1073-0.CrossRefPubMed

Huang, Y., Arnold, S. R., Foley, K. R., & Trollor, J. N. (2020). Diagnosis of autism in adulthood: A scoping review. Autism, 24(6), 1311–1327. https://doi.org/10.1177/1362361320903128.CrossRefPubMed

IBM Corp. (2021). IBM SPSS Statistics for Windows. In (Version 24.0) IBM Corp.

Jones, S. C., & Harwood, V. (2009). Representations of autism in Australian print media. Disability & Society, 24(1), 5–18. https://doi.org/10.1080/09687590802535345.CrossRef

Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49(1), 59–71. https://doi.org/10.1037/a0028353.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, 20(4), 442–462. https://doi.org/10.1177/1362361315588200.CrossRefPubMed

Leach, C. W., Van Zomeren, M., Zebel, S., Vliek, M. L., Pennekamp, S. F., Doosje, B., Ouwerkerk, J. W., & Spears, R. (2008). Group-level self-definition and self-investment: A hierarchical (multicomponent) model of in-group identification. Journal of Personality and Social Psychology, 95(1), 144–165. https://doi.org/10.1037/0022-3514.95.1.144.CrossRefPubMed

Linton, K. F. (2014). Clinical diagnoses exacerbate stigma and improve self-discovery according to people with autism. Social Work in Mental Health, 12(4), 330–342. https://doi.org/10.1080/15332985.2013.861383.CrossRef

MacLeod, A., Lewis, A., & Robertson, C. (2013). ‘Why should I be like bloody Rain Man?!’ Navigating the autistic identity. British Journal of Special Education, 40(1), 41–49. https://doi.org/10.1111/1467-8578.12015.CrossRef

McCormack, G., Dillon, A. C., Healy, O., Walsh, C., & Lydon, S. (2020). Primary care physicians’ knowledge of autism and evidence-based interventions for autism: A systematic review. Review Journal of Autism and Developmental Disorders, 7(3), 226–241. https://doi.org/10.1007/s40489-019-00189-4.CrossRef

McDonald, T. (2017). Discriminative and criterion validity of the autism spectrum identity scale (ASIS). Journal of Autism and Developmental Disorders, 47(10), 3018–3028. https://doi.org/10.1007/s10803-017-3221-2.CrossRefPubMed

Perry, E., Mandy, W., Hull, L., & Cage, E. (2022). Understanding camouflaging as a response to autism-related stigma: A social identity theory approach. Journal of Autism and Developmental Disorders, 52(2), 800–810. https://doi.org/10.1007/s10803-021-04987-w.CrossRefPubMed

Qualtrics. (2017). Qualtrics (version 2.6). In Qualtrics.

Riccio, A., Kapp, S. K., Jordan, A., Dorelien, A. M., & Gillespie-Lynch, K. (2021). How is autistic identity in adolescence influenced by parental disclosure decisions and perceptions of autism? Autism, 25(2),374–388. https://doi.org/10.1177/1362361320958214

Ritsher, J. B., Otilingam, P. G., & Grajales, M. (2003). Internalized stigma of mental illness: Psychometric properties of a new measure. Psychiatry Research, 121(1), 31–49. https://doi.org/10.1016/j.psychres.2003.08.008.CrossRefPubMed

Sinclair, J. (1999). Why I dislike ‘person-first’ language. http://web.archive.org/web/20090210190652/http://web.syr.edu/~jisincla/person_first.htm

van ‘t Hof, M., Tisseur, C., van Berckelear-Onnes, I., van Nieuwenhuyzen, A., Daniels, A. M., Deen, M., Hoek, H. W., & Ester, W. A. (2021). Age at autism spectrum disorder diagnosis: A systematic review and meta-analysis from 2012 to 2019. Autism, 25(4), 862–873. https://doi.org/10.1177/1362361320971107.CrossRefPubMed

Yu, N., & Farrell, L. (2020). Autism in the media: A longitudinal study of stigma cues and framing of attribution. Newspaper Research Journal, 41(4), 489–505. https://doi.org/10.1177/0739532920969887.CrossRef

Titel: Brief Report: Learning About Autism: Is the Source of Autism Knowledge Associated with Differences in Autism Knowledge, Autism Identity, and Experiences of Stigma
Auteurs: Simon M. Bury
Alex Haschek
Michael Wenzel
Jennifer R. Spoor
Darren Hedley
Publicatiedatum: 28-11-2022
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 11/2024
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-022-05823-5

Andere artikelen Uitgave 11/2024

Behaviours that Challenge in SATB2-associated Syndrome: Correlates of Self-injury, Aggression and Property Destruction

Open Access
Original Paper

Increasing Face Mask Wearing in Autistic Individuals Using Behavior Analytic Interventions: A Systematic Review and Meta-analysis

Open Access
Original Paper

Comprehension of Spatial Demonstratives in Mandarin-speaking Children on the Autism Spectrum: The Roles of Theory of Mind and Executive Function

Original Paper

Mental Health Providers’ Perspectives on What Helps and Hinders in Psychotherapy for Autistic Adults with Co-occurring Mental Health Problems

Original Paper

Using Popular Media to Change Attitudes and Bolster Knowledge About Autism Spectrum Disorder

Original Paper

COVID-19 and Neurodevelopmental Disabilities: Examining the Impact of the First 2 Years of the Pandemic on the Demand for Pediatric Inpatient Care

Original Paper