Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

16-08-2022 | Original Paper

“I Was Like a Bird Without Wings”: Autistic Women’s Retrospective Experiences in General Schools

Auteur: Mati Zakai-Mashiach

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 11/2023

Abstract

Autistic individuals’ experience of the inclusion process is poorly understood, especially that of female pupils. This study retrospectively explored the views of autistic women who were included in general schools throughout childhood and adolescence, from elementary to high school, to understand their unique experiences and learn more about their needs in general schools. Semi-structured interviews were conducted, data were thematically analyzed, and key issues emerged pertaining to each educational level. The women described a complex journey within the general education system. Their responses highlight the need for greater attention to autistic females' patterns of behavior in research and practice. Implications and recommendations for educators and schools are provided, and directions for future research are outlined.

vorige artikel Social Cognition in Adolescents with Developmental Language Disorder (DLD): Evidence from the Social Attribution Task

volgende artikel Combined Physical Training Strategies Improve Physical Fitness, Behavior, and Social Skills of Autistic Children

Consistent with the practice common among autistic self-advocates (Brown, 2011), identity-first language was used throughout this article.

I eschewed the use of functioning-level descriptors because of the autistic community’s declaration that this term can be a misleading descriptive shortcut that can create a false impression that they do not need additional support (for a fuller rationale for this choice see Bottema-Beutel et al., 2020 and Kenny et al., 2016).

AERA. (2004). Ethical standards - III Intellectual ownership. American Educational Research Association.

APA. (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.). American Psychiatric Association.

Attwood, T. (2006). The Pattern of Abilities and Development for Girls with Asperger’s Syndrome. In T. Attwood & T. Grandin (Eds.), Asperger’s and girls (pp. 1–7). Future Horizons.

Attwood, T. (2007). The complete guide to Asperger’s syndrome. Kingsley.

Barbour, R. S. (2000). The role of qualitative research in broadening the “evidence base” for clinical practice. Journal of Evaluation in Clinical Practice, 6(2), 155–163. https://doi.org/10.1046/j.1365-2753.2000.00213.xCrossRefPubMed

Beck, S. B., Lundwall, R. A., Gabrielsen, T., Cox, J. C., & South, M. (2020). Looking good but feeling bad: “Camouflaging” behaviors and mental health in women with autistic traits. Autism, 24(4), 809–821. https://doi.org/10.1177/1362361320912147CrossRefPubMed

Begeer, S., Mandell, D., 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-zCrossRefPubMed

Blatchford, P., Baines, E., & Pellegrini, A. (2003). The social context of school playground games: Sex and ethnic differences, and changes over time after entry to junior school. British Journal of Developmental Psychology, 21(4), 481–505. https://doi.org/10.1348/026151003322535183CrossRef

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. https://doi.org/10.1191/1478088706qp063oaCrossRef

Brown, L. (2011). Identity-first language/autistic self-advocacy network. Retrieved July 15, 2021, from http://autisticadvocacy.org/about-asan/identity-first-language/

Cage, E., & Troxell-Whitman, Z. (2019). Understanding the reasons, contexts and costs of camouflaging for autistic adults. Journal of Autism and Developmental Disorders, 49(5), 1899–1911. https://doi.org/10.1007/s10803-018-03878-xCrossRefPubMedPubMedCentral

Carpenter, B., Happé, F., & Egerton, J. (2019). Girls and autism educational family and personal perspectives. Routledge.CrossRef

Chester, V. (2019). Autistic women and girls: Under-recognized, under-researched and under-served. Advances in Autism, 5(1), 1–1. https://doi.org/10.1108/AIA-01-2019-049CrossRef

Clarke, V., & Braun, V. (2013). Teaching thematic analysis: Overcoming challenges and developing strategies for effective learning. The Psychologist, 26(2), 120–123.

Cook, A., Ogden, J., & Winstone, N. (2018). Friendship motivations, challenges and the role of masking for girls with autism in contrasting school settings. European Journal of Special Needs Education, 33(3), 302–315. https://doi.org/10.1080/08856257.2017.1312797CrossRef

Cridland, E. K., Jones, S. C., Caputi, P., & Magee, C. A. (2014). Being a girl in a boys’ world: Investigating the experiences of girls with autism spectrum disorders during adolescence. Journal of Autism and Developmental Disorders, 44(6), 1261–1274. https://doi.org/10.1007/s10803-013-1985-6CrossRefPubMed

Danker, J., Strnadova, I., & Cumming, T. M. (2019). Picture my well-being: Listening to the voices of students with autism spectrum disorder. Research in Developmental Disabilities, 89, 130–140. https://doi.org/10.1016/j.ridd.2019.04.005CrossRefPubMed

Davidson, J., & Henderson, V. L. (2010). "Coming out” on the spectrum: Autism, identity and disclosure. Social & Cultural Geography, 11(2), 155–170. https://doi.org/10.1080/14649360903525240CrossRef

Dean, M., Kasari, C., Shih, W., Frankel, F., Whitney, R., Landa, R., Lord, C., Orlich, F., King, B., & Harwood, R. (2014). The peer relationships of girls with ASD at school: Comparison to males and females with and without ASD. Journal of Child Psychology and Psychiatry, 55(11), 1218–1225. https://doi.org/10.1111/jcpp.12242CrossRefPubMed

Dimitrellou, E., & Male, D. (2020). Understanding what makes a positive school experience for pupils with SEND: Can their voices inform inclusive practice? Journal of Research in Special Educational Needs, 20, 87–96. https://doi.org/10.1080/13603116.2018.1511757CrossRef

Emam, M. M., & Farrell, P. (2009). Tensions experienced by teachers and their views of support for pupils with autism spectrum disorders in mainstream schools. European Journal of Special Needs Education, 24(4), 407–422. https://doi.org/10.1080/08856250903223070CrossRef

Ewe, L. P. (2019). ADHD symptoms and the teacher–student relationship: A systematic literature review. Emotional and Behavioural Difficulties, 24(2), 136–155. https://doi.org/10.1080/13632752.2019.1597562CrossRef

Farrugia, D. (2009). Exploring stigma: Medical knowledge and the stigmatisation of parents of children diagnosed with autism spectrum disorder. Sociology of Health & Illness, 31, 1011–1027. https://doi.org/10.1111/j.1467-9566.2009.01174.xCrossRef

Frost, K. M., Bailey, K. M., & Ingersoll, B. R. (2019). "I just want them to see me as…me”: Identity, community, and disclosure practices among college students on the autism spectrum. Autism in Adulthood. https://doi.org/10.1089/aut.2018.0057CrossRefPubMedPubMedCentral

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

Goodall, C. (2018). Inclusion is a feeling, not a place: A qualitative study exploring autistic young people’s conceptualizations of inclusion. International Journal of Inclusive Education. https://doi.org/10.1080/13603116.2018.1523475CrossRef

Gould, J. (2017). Towards understanding the under-recognition of girls and women on the autism spectrum. Autism, 21(6), 703–705. https://doi.org/10.1177/1362361317706174CrossRefPubMed

Gould, J., & Ashton-Smith, J. (2011). Missed diagnosis or misdiagnosis? girls and women on the autism spectrum. Good Autism Practice (GAP), 12(1), 34–41.

Haegele, J. A., & Zhu, X. (2017). Experiences of individuals with visual impairments in integrated physical education: A retrospective study. Research Quarterly for Exercise and Sport, 88(4), 425–435. https://doi.org/10.1080/02701367.2017.1346781CrossRefPubMed

Hall, J. A. (2010). Sex differences in friendship expectations: A meta-analysis. Journal of Social and Personal Relationships, 28(6), 723–747. https://doi.org/10.1177/0265407510386192CrossRef

Head, A. M., McGillivray, J. A., & Stokes, M. (2014). Gender differences in emotionality and sociability in children with autism spectrum disorders. Molecular Autism, 5(1), 5–19. https://doi.org/10.1186/2040-2392-5-19CrossRef

Hebron, J., Humphrey, N., & Oldfield, J. (2015). Vulnerability to bullying of children with autism spectrum conditions in mainstream education: A multi-informant qualitative. Journal of Research in Special Educational Needs, 15(3), 185–193. https://doi.org/10.1111/1471-3802.12108CrossRef

Honeybourne, V. (2015). Girls on the autism spectrum in the classroom: Hidden difficulties and how to help. Good Autism Practice (GAP), 16(2), 11–20.

Howard, K., Katsos, N., & Gibson, J. (2019). Using interpretative phenomenological analysis in autism research. Autism, 23(7), 1871–1876. https://doi.org/10.1177/1362361318823902CrossRefPubMed

Howlin, P. (2005). Outcomes in autism spectrum disorders. In F. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (Vol. 1, pp. 201–222). Wiley.CrossRef

Hsiao, M. N., Tseng, W. L., Huang, H. Y., & Gau, S. F. (2013). Effects of autistic traits on social and school adjustment in children and adolescents: The moderating roles of age and gender. Research in Developmental Disabilities, 34(1), 254–265. https://doi.org/10.1016/j.ridd.2012.08.001CrossRefPubMed

Hull, L., Petrides, K. V., 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 Disorder, 47, 2519–2534. https://doi.org/10.1007/s10803-017-3166-5CrossRef

Humphrey, N., & Parkinson, G. (2006). Research on Interventions for children and young people on the autistic spectrum: A critical perspective. Journal of Research in Special Educational Needs, 6(2), 76–86.CrossRef

Huws, J. C., & Jones, R. P. (2008). Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism. Journal of Intellectual & Developmental Disability, 33(2), 99–107. https://doi.org/10.1080/13668250802010394CrossRef

Jarman, B., & Rayner, C. (2015). Asperger’s and girls: What teachers need to know. Australasian Journal of Special Education, 39(2), 128–142. https://doi.org/10.1017/jse.2015.7CrossRef

Johnsen, S. K., Haensly, P. A., Ryser, G. R., & Ford, R. F. (2002). Changing general education classroom practices to adapt for gifted students. Gifted Child Quarterly, 46(1), 45–63. https://doi.org/10.1177/001698620204600105CrossRef

Kanfiszer, L., Davies, F., & Collins, S. (2017). ‘I was just so different’: The experiences of women diagnosed with an autism spectrum disorder in adulthood in relation to gender and social relationships. Autism, 21(6), 661–669. https://doi.org/10.1177/1362361316687987CrossRefPubMed

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/a0028353CrossRefPubMed

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/10.1177/1362361315588200CrossRefPubMed

Larkin, M., Shaw, R., & Flowers, P. (2019). Multi-perspectival designs and processes in interpretative phenomenological analysis research. Qualitative Research in Psychology, 16(2), 182–198. https://doi.org/10.1080/14780887.2018.1540655CrossRef

Link, B., & Phelan, J. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363–385. https://doi.org/10.1146/annurev.soc.27.1.363CrossRef

Loomes, R., Hull, L., & Mandy, W. (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 & Adolescent Psychiatry, 56(6), 466–474. https://doi.org/10.1016/j.jaac.2017.03.013CrossRef

Maccoby, E. E. (2002). Gender and group process: A developmental perspective. Current Directions in Psychological Science, 11(2), 54–58. https://doi.org/10.1111/1467-8721.00167CrossRef

Maenner, M. J., Shaw, K. A., Bakian, A. V., Bilder, D. A., Durkin, M. S., Esler, A., Furnier, S. M., Hallas, L., Hall-Lande, J., Hudson, A., Hughes, M. M., Patrick, M., Pierce, K., Poynter, J. N., Salinas, A., Shenouda, J., Vehorn, A., Warren, Z., Constantino, J. N., … Cogswell, M. E. (2021). Prevalence and characteristics of autism spectrum disorder among children aged 8 years — autism and developmental disabilities monitoring network, 11 sites, United States, 2018. MMWR Surveillance Summaries 2021, 70(11), 1–16. https://doi.org/10.15585/mmwr.ss7011a1CrossRef

Milner, V., McIntosh, H., Colvert, E., & Happé, F. (2019). A qualitative exploration of the female experience of autism spectrum disorder (ASD). Journal of Autism and Developmental Disorders, 49(6), 2389–2402. https://doi.org/10.1007/s10803-019-03906-4CrossRefPubMedPubMedCentral

Moyse, R., & Porter, J. (2015). The experience of the hidden curriculum for autistic girls at mainstream primary schools. European Journal of Special Needs Education, 30(2), 187–201. https://doi.org/10.1080/08856257.2014.986915CrossRef

Nichols, S., Moravcik, G. M., & Tetenbaum, S. P. (2009). Girls growing up on the autism spectrum: What parents and professionals should know about the pre-teen and teenage years. Jessica Kingsley Publishers.

Ozsivadjian, A., Knott, F., & Magiati, I. (2012). Parent and child perspectives on the nature of anxiety in children and young people with autism spectrum disorders: A focus group study. Autism, 16(2), 107–121. https://doi.org/10.1177/1362361311431703CrossRefPubMed

Percy, W. H., Kostere, K., & Kostere, S. (2015). Generic qualitative research in psychology. The Qualitative Report, 20(2), 76–85.

Perepa, P. (2011). Classroom and playground: Support for children with autism spectrum disorders. Retrieved from http://capacity-resource.middletownautism.com/wp-content/uploads/sites/6/2017/04/Classroom_and_playground.pdf

Posserud, M.-B., Lundervold, A. J., & Gillberg, C. (2006). Autistic features in a total population of 7–9-year old children assessed by the ASSQ (Autism Spectrum Screening Questionnaire). Journal of Child Psychology and Psychiatry and Allied Disciplines, 47(2), 167–175. https://doi.org/10.1111/j.1469-7610.2005.01462.xCrossRefPubMed

Reid, K., Flowers, P., & Larkin, M. (2005). Exploring lived experience. The Psychologist, 18(1), 20–23.

Ritchie, S. (2003). Qualitative research practice A guide to social science students and researchers. Sage.

Rivet, T. T., & Matson, J. L. (2011). Review of gender differences in core symptomatology in autism spectrum disorders. Research in Autism Spectrum Disorders, 23(3), 957–976. https://doi.org/10.1007/s10882-011-9235-3CrossRef

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. https://doi.org/10.1186/s13229-016-0073-0CrossRefPubMedPubMedCentral

Sciutto, M. J., Richwine, S., Mentrikoski, J. M., & Niedzwiecki, K. (2012). A qualitative analysis of the school experiences of students with Asperger syndrome. Focus on Autism and Other Developmental Disabilities, 27(3), 177–188. https://doi.org/10.1177/1088357612450511CrossRef

Seers, K., & Hogg, R. C. (2021). 'You don’t look autistic’: A qualitative exploration of women’s experiences of being the ‘autistic other. Autism, 25(6), 1553–1564. https://doi.org/10.1177/1362361321993722CrossRefPubMed

Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretive phenomenological analysis: Theory, methods and research. Sage.

Special Education Law (1988). Retrieved from http://cms.education.gov.il/EducationCMS/Units/Zchuyot/ChukimVeamanot/Chukim/ChinuchMeyuchad.htm [In Hebrew]

Thompson-Hodgetts, S., Labonte, C., Mazumder, R., & Phelan, S. (2020). Helpful or harmful? A scoping review of perceptions and outcomes of autism diagnostic disclosure to others. Research in Autism Spectrum Disorders, 77, 101598. https://doi.org/10.1016/j.rasd.2020.101598CrossRef

Tierney, S., Burns, J., & Kilbey, E. (2016). Looking behind the mask: Social coping strategies of girls on the autistic spectrum. Research in Autism Spectrum Disorders, 23, 73–83. https://doi.org/10.1016/j.rasd.2015.11.013CrossRef

Whitlock, A., Fulton, K., Lai, M., Pellicano, E., & Mandy, W. (2020). Recognition of girls on the autism spectrum by primary school educators: An experimental study. Autism Research. https://doi.org/10.1002/aur.2316CrossRefPubMed

Wilkinson, L. A. (2008). The gender gap in Asperger syndrome: Where are the girls? Teaching Exceptional Children Plus, 4(4). Retrieved from http://escholarship.bc.edu/education/tecplus/vol4/iss4/art3

Winchell, B., Sreckovic, M., & Schultz, T. (2018). Preventing bullying and promoting friendship for students with ASD: Looking back to move forward. Education and Training in Autism and Developmental Disabilities, 53(3), 243–252.

Zakai-Mashiach, M. (study 1) (in print). Exploring stories firsthand from the specific classrooms of autistic students in regular schools – A retrospective study

Zakai-Mashiach, M. (study 2) (in print). The views of autistic individuals about their inclusion experiences in school - A retrospective study

Titel: “I Was Like a Bird Without Wings”: Autistic Women’s Retrospective Experiences in General Schools
Auteur: Mati Zakai-Mashiach
Publicatiedatum: 16-08-2022
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 11/2023
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-022-05717-6

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 11/2023

Differences in Art Appreciation in Autism: A Measure of Reduced Intuitive Processing

The Effects of a Caregiver Implemented Toilet Training Package

Applying a Parent Training Program in a Naturalistic Behavior Analytic Context to Improve Attachment in Children with ASD

Altered Developmental Trajectory in Male and Female Rats in a Prenatal Valproic Acid Exposure Model of Autism Spectrum Disorder

Combined Physical Training Strategies Improve Physical Fitness, Behavior, and Social Skills of Autistic Children

Cross-Cultural Comparison of the Contexts Associated with Emotional Outbursts