Abstract
There is limited research examining the inclusion of autistic people in their local communities. This paper reports on two Australian studies which explored this gap, focusing on both autistic people’s experiences and non-autistic people’s attitudes towards autistic individuals. Study One was conducted with primarily non-autistic people (n = 2,383), and Study Two with primarily parents and carers of autistic people (n = 1,297 people). The majority of non-autistic adults perceived discrimination against autistic people in the community; consistent with the experiences of autistic people and their carers. Of particular concern was more negative attitudes towards, and experiences of, autistic adults. There is an urgent need to improve society’s acceptance and inclusion of autistic people of all ages.
Similar content being viewed by others
Notes
As there were only 18 respondents from the Northern Territory, these were excluded from the analyses by state of residence.
Percentages are reported to one decimal place; where the cell size is less than 100, they are reported as whole numbers.
References
ABS. (2015). Autism in Australia Retrieved from https://www.abs.gov.au/ausstats/abs@.nsf/Lookup/4430.0Main%20Features752015
ABS. (2012). Autism in Australia 2012, Autism and Education. Retrieved from https://www.abs.gov.au/ausstats/abs@.nsf/Latestproducts/4428.0Main%20Features52012
ABS. (2018). 2018 Survey of Disabiltiy. Ageing and Carers.
Allely, C. S. (2019). Understanding and recognising the female phenotype of autism spectrum disorder and the “camouflage” hypothesis: a systematic PRISMA review. Advances in Autism, 5(1), 14–37. https://doi.org/10.1108/AIA-09-2018-0036.
Amado, A. N., Stancliffe, R. J., Mccarron, M., & Mccallion, P. (2013). Social inclusion and community participation of individuals with intellectual/developmental disabilities. Intellectual and Developmental Disabilities, 51(5), 360–375. https://doi.org/10.1352/1934-9556-51.5.360.
Anderson, A. H., Stephenson, J., & Carter, M. (2017). A systematic literature review of the experiences and supports of students with autism spectrum disorder in post-secondary education. Research in Autism Spectrum Disorders, 39, 33–53. https://doi.org/10.1016/j.rasd.2017.04.002.
Bigby, C., & Wisel, I. (2019). Using the concept of encounter to further the social inclusion of people with intellectual disabilities: what has been learned? Research and Practice in Intellectual and Developmental Disabilities, 6(1), 39–51. https://doi.org/10.1080/23297018.2018.1528174.
Bredewold, F., Tonkens, E., & Trappenburg, M. (2016). Urban encounters limited: The importance of built-in boundaries in contacts between people with intellectual or psychiatric disabilities and their neighbours. Urban Studies, 53(16), 3371–3387. https://doi.org/10.1177/0042098015616895.
Cassidy, S. S., Gould, K., Townsend, E., Pelton, M., Robertson, A. E., & Rodgers, J. (2020). Is camouflaging autistic traits associated with suicidal thoughts and behaviours? Expanding the interpersonal psychological theory of suicide in an undergraduate student sample. Journal of Autism and Developmental Disorders, 50(10), 3638–3648. https://doi.org/10.1007/s10803-019-04323-3.
Gelbar, N., Smith, I., & Reichow, B. (2014). Systematic Review of Articles Describing Experience and Supports of Individuals with Autism Enrolled in College and University Programs. Journal of Autism and Developmental Disorders, 44(10), 2593–2601. https://doi.org/10.1007/s10803-014-2135-5.
Goodall, C., & Mackenzie, A. (2019). Title: what about my voice? Autistic young girls’ experiences of mainstream school. European Journal of Special Needs Education, 34(4), 499–513. https://doi.org/10.1080/08856257.2018.1553138.
Gray, K. M., Piccinin, A., Keating, C. M., Taffe, J., Paramenter, T. R., Hofer, S., Einfeld, S. L., & Tonge, B. J. (2014). Outcomes in young adulthood: are we achieving community participation and inclusion? Journal of Intellectual Disability Research, 58(8), 734–745.
Haelle, T. (2018). The consequences of compensation in autism. Retrieved from https://www.neurologyadvisor.com/topics/autism-spectrum-disorder/the-consequences-of-compensation-in-autism/
Hategan, A., Bourgeois, J. A., & Goldberg, J. (2017). Aging with autism spectrum disorder: an emerging public health problem. International Psychogeriatrics, 29(4), 695–697. https://doi.org/10.1017/S1041610216001599.
Hedley, D., Uljarević, M., Foley, K. R., Richdale, A., & Trollor, J. (2018). Risk and protective factors underlying depression and suicidal ideation in autism spectrum disorder. Depression and Anxiety, 35(7), 648–657. https://doi.org/10.1002/da.22759.
Henninger, N. A., & Taylor, J. L. (2013). Outcomes in adults with autism spectrum disorders: a historical perspective. Autism, 17(1), 103–116. https://doi.org/10.1177/1362361312441266.
Hodges, J. M., & Gore, J. S. (2019). Social connections and well-being: With whom do you identify and why? Psychological Studies, 64(1), 436–446. https://doi.org/10.1007/s12646-019-00506-1.
Hull, L., Petrides, K., Allison, C., Smith, P., Baron-Cohen, S., Lai, M.-C., & Mandy, W. (2017). “Putting on my best normal”: Social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders, 47(8), 2519–2534. https://doi.org/10.1007/s10803-017-3166-5.
Jacoby, E. C., Walton, K., & Guada, J. (2019). Community perspectives on adults with autism spectrum disorder. Occupational Therapy in Mental Health, 35(1), 72–91. https://doi.org/10.1080/0164212X.2018.1507774.
John, R. P. S., Knott, F. J., & Harvey, K. N. (2018). Myths about autism: An exploratory study using focus groups. Autism, 22(7), 845–854. https://doi.org/10.1177/1362361317714990.
Johnson, T. D., & Joshi, A. (2016). Dark clouds or silver linings? A stigma threat perspective on the implications of an autism diagnosis for workplace well-being. Journal of Applied Psychology, 101(3), 430–449. https://doi.org/10.1037/apl0000058.
Jones, S. (2019). We need to stop perpetuating the myth that children grow out of autism https://theconversation.com/we-need-to-stop-perpetuating-the-myth-that-children-grow-out-of-autism-119540
Jones, S.C., Akram, M., Gordon, C.S., Murphy, N., & Sharkie, F. (2021). Autism in Australia: Community knowledge and autistic people's experiences. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-020-04819-3.
Koller, D., & Stoddart, K. (2020). Approaches that address social inclusion for children with disabilities: A critical review. Child & Youth Care Forum. https://doi.org/10.1007/s10566-020-09589-8.
Lilley, R. (2013). It’s an absolute nightmare: maternal experiences of enrolling children diagnosed with autism in primary school in Sydney, Australia. Disability & Society, 28(4), 514–526. https://doi.org/10.1080/09687599.2012.717882.
Makin, C., Hill, V., & Pellicano, E. (2017). The primary-to-secondary school transition for children on the autism spectrum: A multi-informant mixed-methods study. Autism & Developmental Language Impairments, 2, 1–18. https://doi.org/10.1177/2396941516684834.
Marsack, C., & Samuel, P. (2017). Mediating effects of social support on quality of life for parents of adults with autism. Journal of Autism and Developmental Disorders, 47(8), 2378–2389. https://doi.org/10.1007/s10803-017-3157-6.
Morrison, K. E., Debrabander, K. M., Jones, D. R., Faso, D. J., Ackerman, R. A., & Sasson, N. J. (2020). Outcomes of real-world social interaction for autistic adults paired with autistic compared to typically developing partners. Autism, 24(5), 1067–1080. https://doi.org/10.1177/1362361319892701.
Peters, R., & Brooks, R. (2016). Parental perspectives on the transition to secondary school for students with Asperger syndrome and high-functioning autism: A pilot survey study. British Journal of Special Education. https://doi.org/10.1111/1467-8578.12125.
Sarrett, J. (2017). Interviews, disclosures, and misperceptions: Autistic adults’ perspectives on employment related challenges. Disability Studies Quarterly. https://doi.org/10.18061/dsq.v37i2.5524.
Sasson, N. J., Faso, D. J., Nugent, J., Lovell, S., Kennedy, D. P., & Grossman, R. B. (2017). Neurotypical peers are less willing to interact with those with autism based on thin slice judgments. Scientific Reports, 7(1), 1–10. https://doi.org/10.1038/srep40700.
Sasson, N. J., & Morrison, K. E. (2019). First impressions of adults with autism improve with diagnostic disclosure and increased autism knowledge of peers. Autism, 23(1), 50–59. https://doi.org/10.1177/1362361317729526.
Taylor, J. L., Adams, R. E., & Bishop, S. L. (2017). Social participation and its relation to internalizing symptoms among youth with autism spectrum disorder as they transition from high school. Autism Research, 10(4), 663–672. https://doi.org/10.1002/aur.1709.
Temple, J. B., & Kelaher, M. (2018). Is disbility exclusion associated with psychological distress? Australian evidence from a national cross-sectional survey. British Medical Journal Open, 8(5), e020829. https://doi.org/10.1136/bmjopen-2017-020829.
Tong, H. M., Lai, D. W. K., Zeng, Q., & Xu, W. Y. (2011). Effects of social exclusion on depressive symptoms: elderly Chinese living alone in Shangahi, China. Journal of Cross-cultural Gerontology, 26(4), 349–364. https://doi.org/10.1007/s10823-011-9150-1.
Underhill, J. C., Ledford, V., & Adams, H. (2019). Autism stigma in communication classrooms: exploring peer attitudes and motivations toward interacting with atypical students. Communication Education, 68(2), 175–192. https://doi.org/10.1080/03634523.2019.1569247.
United Nations. (2016). Convention on the Rights of Persons with Disabilities, General comment No. 4 (2016), Article 24: Right to inclusive education Retrieved from https://www.ohchr.org/Documents/HRBodies/CRPD/GC/RighttoEducation/CRPD-C-GC-4.doc
Wallace, G. L., Budgett, J., & Charlton, R. A. (2016). Aging and autism spectrum disorder: Evidence from the broad autism phenotype. Autism Research, 9(12), 1294–1303. https://doi.org/10.1002/aur.1620.
Yur’yev, A., Varnik, P., Sisask, M., Leppik, L., Lumiste, K., & Varnik, A. (2011). Some aspects of social exclusion: Do they influence suicide mortality. International Journal of Social Psychiatry, 59(3), 232–238. https://doi.org/10.1177/0020764011431792.
Author Contributions
F.S.and S.C.J. conceived of the study. S.C.J. was the principal investigator for the project, wrote the discussion section and edited the final manuscript. M.A. and N.M. conducted the data analysis and drafted the results section. C.S.G. wrote the first draft of the introduction section.
Funding
This study was funded by Amaze (the peak body for autistic people and their supporters in Victoria).
Author information
Authors and Affiliations
Corresponding author
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Supplementary Information
Below is the link to the electronic supplementary material.
Rights and permissions
About this article
Cite this article
Jones, S.C., Gordon, C.S., Akram, M. et al. Inclusion, Exclusion and Isolation of Autistic People: Community Attitudes and Autistic People’s Experiences. J Autism Dev Disord 52, 1131–1142 (2022). https://doi.org/10.1007/s10803-021-04998-7
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10803-021-04998-7