Session Information
04 SES 04 A, Paper Session
Paper Session
Contribution
A learning environment fitted for the individual needs is the key to every inclusive setting, especially when it comes to autistic students (The term 'autistic students' is used due to it's usage as a self-designation by autistic persons). Taking recent research on autism into account we can see, that social participation and success in education depends on removal of individual barriers. Still, recognition and removal of these barriers seems to be a challenge in school practical contexts. The main objective of the presented research project is to develop a diagnostic instrument to assesses individual barriers for autistic students. The project is a collaboration between Goethe-University Frankfurt, Humboldt-University Berlin and White Unicorn e.V., an association for the self-advocacy of autistic people in scientific contexts.
Autism has a worldwide prevalence of about 1%. However, there is evidence that the number of diagnoses has increased in recent years and that prevalence is higher in high-income countries, such as Germany or the USA (CDC, 2021; Lord et al., 2020). Research on autism has been experiencing regular paradigm shifts since Kanners an Aspergers first descriptions (Lord et al., 2020). While the perspective on autism was previously often marked by deficit-oriented or syndrome-based views (e.g. Baron-Cohen et al., 1985; Baron-Cohen, 1995) in recent years studies focused more on differences in perception of autistic persons (e.g. Rosqvist et al., 2020). Following these perspectives the research projects recognizes autism in the sense of the Neurodiversity Paradigm (Walker, 2014, 2015). Current neuroscientific research suggests that autism is associated with an altered (sensory) perception of the environment and a resulting increased level of arousal (Marco et al., 2011; Perrykkad & Hohwy, 2020). The aim of this research will be to relate these findings to the area of schools and thus to actively promote barrier reduction to significantly improve the school situation for autistic students.
Inclusion, from a human rights perspective, brings the issue of participation of people with disabilities into the focus of social barriers. Here, according to the four-dimensional scheme of UNESCO's 'Education for All' strategy (Riedel, 2010; Sauter, 2013), the focus is on Availability, Accessibility, Acceptability and Adaptability of social systems. In this respect, Art. 24 of the UN-CRPD speaks of "reasonable accommodation" that must be created in educational institutions in order to overcome the aforementioned dimensions of barriers to participation. This is connected to protection against discrimination (Ziegeler & Schubert, 2015). In this sense, the project takes a diagnostic perspective on individual barriers. Unfortunately, standardized instruments for the identification of individual barriers for autistic children are currently missing. This gap is to be closed by the project.
The research project follows - according to the Neurodiversity Paradigm - the principles of participatory research. Collaboration takes place on an equal footing by ensuring that all participants are involved in all phases of the project with equal voting rights. This is largely done democratically. In a statute, however, all involved are granted a veto right, so that an overruling of the involved affected persons is prevented. The forms of cooperation are theoretically founded, so that the "expertise in one's own matter" of the participants is used in the best possible way. Ultimately the scientific process benefits from this, since the perspectives of those affected shape the research process instead of looking at it purely descriptively from the outside (Farin-Glattacker et al., 2014).
This presentation will outline the development of the instrument up to the pilot phase. Furthermore, the collaboration in a participatory research project will be reflected and practical conditions for its success will be identified.
Method
The objective of the presented project is to develop an instrument for the individual identification of social and sensory barriers for autistic students in elementary and primary schools. (Classes 1, 5 & 7). In the development of a first version - which is currently tested in schools - we used a mix of qualitative and quantitative methods, all in form of online questionnaires. First we used open questions to ask autistic persons about their experience of personal barriers in schools. This questionnaire was based on 27 Barriers, identified by White Unicorn e.V. (2016) via psychometric assessment, which were used as deductive categories in the analysis of the data. The aim was to find most common examples of barriers in schools. Then for each barrier 4 Items were selected for a quantitative questionnaire, where participants were asked to assess the degree to which the barrier distracted them. The results were used for item selection on the basis of factor analysis, taking selectivity and item difficulty into account. Finally, we conducted another pre-test to test the change of the scale from bipolar to unipolar. Ultimately, we ended up with a questionnaire consisting of 50 pretested items to be tested for use in schools. We will show this version during the presentation. We also developed an assessment scale for individual well-being in schools, which consists of items about the overall well-being in schools, social climate and recognition in the classroom and subjective Stress. This tool was also tested via an online questionnaire and evaluated to use it as a baseline measurement of the effects of barrier reduction in schools.
Expected Outcomes
The analysis of the data from the first testing phase showed that there are common barriers which influence autistic students in particular. We also saw a significantly lower overall wellbeing for autistic students in comparison to non-autistics. This hints once again at the need for a tool like we are developing, to assess individual barriers for autistic students, to make inclusive education more possible. We are currently testing the tool in schools, after the data-collection we will give feedback to the schools, which barriers are the most urgent to reduce for them specifically. We will also hold a workshop in each schools to asses practical ways to reduce barriers. The results of the workshop will be evaluated as well, to develop a manual which will go along with the version of the questionnaire. In the end we want to publish a standardized tool for diagnosis of barriers for individual autistic students in inclusive education as well as guidelines for practical reduction of these barriers.
References
Baron-Cohen, S. (1995). Mindblindness: An essay on autism and theory of mind (2. pr). Bradford Books. Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a “theory of mind” ? Cognition, 21(1), 37–46. https://doi.org/10.1016/0010-0277(85)90022-8 CDC. (2021). Data & Statistics on Autism Spectrum Disorder. https://www.cdc.gov/ncbddd/autism/data.html. Farin-Glattacker, E., Kirsching, S., Meyer, T., & Buschmann-Steinhage, R. (2014). Partizipation an der Forschung – eine Matrix zur Orientierung. http://dgrw-online.de/files/matrix_ef_1.pdf. Lord, C., Brugha, T. S., Charman, T., Cusack, J., Dumas, G., Frazier, T., Jones, E. J. H., Jones, R. M., Pickles, A., State, M. W., Taylor, J. L., & Veenstra-VanderWeele, J. (2020). Autism spectrum disorder. Nature Reviews. Disease Primers, 6(1), 5. https://doi.org/10.1038/s41572-019-0138-4. Marco, E. J., Hinkley, L. B. N., Hill, S. S., & Nagarajan, S. S. (2011). Sensory processing in autism: A review of neurophysiologic findings. Pediatric Research, 69(5 Pt 2), 48R-54R. https://doi.org/10.1203/PDR.0b013e3182130c54. Perrykkad, K., & Hohwy, J. (2020). Modelling Me, Modelling You: the Autistic Self. Review Journal of Autism and Developmental Disorders, 7(1), 1–31. https://doi.org/10.1007/s40489-019-00173-y. Riedel, E. (2010). Zur Wirkung der internationalen Konvention über die Rechte von Menschen mit Behinderung und ihres Fakultativprotokolls auf das deutsche Schulsystem. https://www.sovd.de/fileadmin/bundesverband/pdf/broschueren/menschen_mit_behinderung/SoVD_Positionspapier_Inklusive_Bildung.pdf. Rosqvist, H. B., Chown, N., & Stenning, A. (2020). Neurodiversity studies: A new critical paradigm. Routledge advances in sociology. Routledge. https://doi.org/10.4324/9780429322297. Sauter, S. (2013). Bildung für alle – Schule für alle? Ausblicke auf ein schulpädagogisches Spannungsfeld im Kontext von Steuerungslogik und der aktuellen Debatte um Inklusion. Zeitschrift Für Inklusion(3). https://www.inklusion-online.net/index.php/inklusion-online/article/view/27/27. Walker, N. (2014). Neurodiversity: Some Basic Terms & Definitions. https://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/. Walker, N. (2015). What is Autism? In M. Sutton (Ed.), The real experts: Readings for parents of autistic children. Autonomous Press. White Unicorn e.V. (2016). Barrieren - Hindernisse, die Menschen stören können. https://www.white-unicorn.org/?mod=hindernissebarrieren.
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