Session Information
04 SES 11 C, Support Structures in Inclusive Education
Paper Session
Contribution
According to official sources, the prevalence of autism (Autism Spectrum Disorder) in Europe is 1% of the general population. Specifically, Spain confirms this estimate, adding that, in terms of gender, one in four people with autism is a woman. As a result, many international studies claim that these numbers are the result of an underrepresentation of the collective, since the majority of the studies that had been carried out on autism are done with male samples.
Consequently, this underrepresentation of autistic girls and women in research has caused most of the available knowledge on autism to reflect the characteristics and perspectives of boys and men.
Therefore, there is little verified information on the reality of autistic girls and women, which causes them to suffer a double vulnerability to discrimination that is reflected in inaccurate, late or mistaken diagnoses; a constant social pressure that leads them to mask or camouflage their autistic traits and that leads to significant emotional discomfort becoming a source of continued stress; health problems and over-prescription of drugs; the lack of support in educational, work and community contexts, institutionalization, violation of their sexual and reproductive rights, etc.; receive more erroneous prior diagnoses, and greater difficulty in accessing the specialized resources they need.
Consequently, this study seeks to have more information on the specificities of girls and women with autism in relation to their social participation in the school context. The study presented here is part of a larger study framed in the doctoral thesis "The processes of social participation of girls and adolescents with autism spectrum disorder. On the way to guarantee their right to an inclusive education". Three studies are part of this thesis; a first quantitative study where, through three scales of participation in school contexts, the voices of 270 students with autism between 10 and 18 years old and 430 parents of these students are collected; a second qualitative study where life stories of girls and adolescents with autism are carried out; and the third study, the one presented here and which follows a qualitative methodology, where discussion groups are held with young autistic women between 18 and 24 years old.
The discussion groups lasted ninety minutes, with four participants per group plus the moderator, and were carried out during the months of November and December 2024. Regarding the content or questions that were introduced in the groups, a semi-structured script was followed, in accordance with the theoretical framework followed in the other two studies where questions related to the educational context are asked; social participation within the school through issues such as the sense of belonging, opportunities for participation; the role of teachers and families in this process, friendships, concerns for the future, etc.
Issues such as masking, the difficulty in establishing relationships with peers or problems sometimes in understanding social cues or identifying bullying situations appear in most of the stories. This research is one of the first to collect the voices of female students with autism regarding their educational experiences at a time when they still did not know they were autistic, and it is the main objective of the study to be able to transfer keys to help the educational practice of teachers and thus improve the well-being of these girls during all their education.
Method
Regarding the methodology, a qualitative methodology were followed, where discussion groups were held with young autistic women between 18 and 24 years old. The discussion groups lasted ninety minutes, with four participants per group plus the moderator and were held during the months of November and December 2024. Regarding the participants, there were 8 women participating, all of them from different parts of Spain and with an autism diagnosis. Two of them got their diagnosis before they were three years old, and the other six girls got them just from one to three years before the groups took place. The groups took place online, via TEAMS. Of the eight girls, two were gifted students and two had associated diagnosis of intellectual disabilities. In other to make the sessions accessible, some supports were facilitated to these women; such us send them the script of in advance so that they can prepare the answers. Also, some of them also decided to join the meeting with a person that would gave them support in case they needed it. Regarding the content or questions worked on in the groups, a semi-structured script is followed, in accordance with the theoretical framework followed in the other two studies where questions related to the educational context are asked; social participation within the school through issues such as the sense of belonging, participation opportunities, the role of teachers and families in this process, friendships, concerns for the future; etc. The theoretical framework that guides the questions is framed in the same theoretical framework that is currently being developed by the EQUIDEI research team (Autonomous University of Madrid) in the National I+D+I project "Towards a Universal Design for Social Participation: multiple case study on implementation and improvement of social participation from an inclusive perspective". When analyzing the groups, a thematic analysis consistent with the interview script and the basic dimensions of the social participation variable was followed. The discussion groups were analyzed with the software for mixed methods MAXQDA.
Expected Outcomes
There are certain points worth considering in relation to what was found in these discussion groups. Firstly, it is relevant that only 25% of the participants were diagnosed with autism at an early stage, which means that most of these girls spent their entire school years without the necessary support for their academic success and personal well-being. As for the main results, we found that these girls, from a very young age, were forced to mask certain traits of their personality for fear of being bullied by their peers, but also for receiving criticism or bad comments from their teachers. Most of the women report not having had friends throughout their educational process and having interacted with their peers only in structured moments within the classroom. Consequently, their sense of belonging regarding to the educational centers they have attended, had been low or non-existent. Also, in relation to the academic context, they claim to had needed certain adjustments when taking exams or in terms of classroom methodology. The 100% of the participants reported having been victims of bullying, from insults, mockery or exclusion to physical and/or sexual abuse. Also, many of them admitted not having realized this abuse until someone from the outside had pointed it out to them. In conclusion, this study can provide more accurate clues about what autism entails in girls who are academically functional and from the outside seem not to need support, but in fact do need it; and, in turn, to be able to provide the necessary support in the social and emotional areas to them. The results found here could be useful both when promoting earlier diagnoses, and to support the educational process of autistic girls and adolescents.
References
Braun, V. and Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(12), 77-101. Cammuso, K., & Knapp‐Ines, K. (2024). Autism in girls:‘Camouflaging,’social functioning, and diagnostic dilemmas. The Brown University Child and Adolescent Behavior Letter, 40(6), 1-6. Confederación Autismo España. (2024). Datos de alumnado general no universitario con trastorno del espectro del autismo Curso 2022-2023. Confederación Autismo España. https://autismo.org.es/wp-content/uploads/2024/04/2024_Informe_DatosAlumnadoNoUniversitario_Curso2022-2023_AutismoEspana.pdf Confederación Autismo España (2021). Recomendaciones para la detección y el diagnóstico del trastorno del espectro del autismo en niñas y mujeres. https://autismo.org.es/wp-content/uploads/2018/09/2021_deteccionydiagnosticomujeres_autismoespana.pdf Goodall, C., y Mackenzie, A. (2019). What about My Voice? Autistic Young Girls’ Experiences of Mainstream School. European Journal of Special Needs Education, 34 (4) : 499 – 513 .http://doi.org/10.1080/08856257.2018.1553138. Humphrey, N., y Symes, W. (2010). Perceptions of social support and experience of bullying among pupils with autistic spectrum disorders in mainstream secondary schools. European Journal of Special Needs Education, 25, 77–91. https://doi.org/10.1080/08856250903450855 McQuaid, G. A., Strang, J. F., & Jack, A. (2024). Borderline Personality as a Factor in Late, Missed, and Mis-Diagnosis in Autistic Girls and Women: A Conceptual Analysis. Autism in Adulthood. Miles, M. B., Huberman, A. M., & Saldaña, J. (2014). Qualitative data analysis: A methods sourcebook (3rd ed.). Sage. O'Hagan, S., Bond, C., & Hebron, J. (2024). Autistic girls and emotionally based school avoidance: supportive factors for successful re-engagement in mainstream high school. International Journal of Inclusive Education, 28(9), 1919-1935. Sanchez, M., Bullen, J. C., Zajic, M. C., McIntyre, N., & Mundy, P. (2024). Behavioral gender differences in school-age children with autism. European Child & Adolescent Psychiatry, 33(4), 1201-1207. Slee, R. (2019). Belonging in an age of exclusion. International Journal of Inclusive Education, 23(9), 909–922. https://doi.org/10.1080/13603116.2019.1602366 UNESCO (2020a). Informe de seguimiento de la Educación en el Mundo 2020. Inclusión y educación: todos, sin excepción. https://es.unesco.org/gemreport/report/2020/inclusion
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