Samenvatting
In this exploratory case study based on qualitative research, we explore the perspectives and experiences of autistic self-advocates in the Netherlands regarding autism, (self-)advocacy, and consumer-run organizations. The focus of our study is a consumer-run organization by and for adult Persons on the Autism Spectrum in the Netherlands: PAS-Nederland or PAS for short. Our analysis reveals four themes relevant to the acceptance and integration of adults with autism into society and work: (1) invisibility of autistic adults; (2) diversity of the autism spectrum; (3) autistic leadership; and (4) collaboration between people with and without autism. We discuss the practical implications of our findings for the inclusion of people with autism in work and society. Our study underscores the importance of putting autistic people at the center of decision-making processes and solutions aimed at improving their outcomes in society, in general, and in the workplace specifically.
Doelstelling
We started with a broad research question: ‘What are the perspectives and experiences of autistic self-advocates in the Netherlands involved in PAS or similar initiatives regarding (1) autism, (2) (self-)advocacy, and (3) CROs.’ We explored what the answers of the interviewees tell us that can be relevant for the integration of people with autism in work and society.
Methode
For this research we used an exploratory case study design based on qualitative research with participatory elements. Our research team held semi-structured interviews with eight autistic people who were involved with autism self-advocacy organizations in the period 1999–2014.
Resultaten
We identified four themes: (1) invisibility, (2) diversity of the autism spectrum, (3) autistic leadership, and (4) collaboration between people with and without autism. Some practical implications of our findings for the inclusion of people with autism in work and society are discussed.
Projectinformatie
Personen
Karin van den Bosch, Anna Krzeminska, Eun Young Song, Lineke van Hal, Mitzi Waltz, Hannah Ebben, Alice Schippers
This research project has some participatory elements. The first author (K.E.v.d.B.) is an autistic self-advocate herself, besides being active as a researcher. She has founded the case studied (PAS), was PAS’s first chair, and was still involved in PAS during this project, although no longer as board member. Furthermore, she is/has been involved in many other autism-related projects as, among others, initiator, (self-)advocate, and (co-)author (Van den Bosch, 2002; 2005; 2015; Waltz et al., 2015). Her prolonged engagement with PAS and related initiatives and organizations provided the rest of the research team with an insider perspective, thus contributing to the depth of understanding of the issues that are explored in this article. Despite the participatory elements, we do not consider this research as a (full) participatory research project. Although the sixth author (H.E.) identifies herself as an autistic person, and the fifth author (M.W.) and the last author (A.S.) are parents of children with autism; they are neither involved in PAS nor the subject of research in this project. In addition, the research team lacked opportunities to cross check with interviewees and seek feedback from them. None of the interviewees participated in the project in the role of researcher or (co-)author. Because this research still has participatory elements, however, we made sure that the team as a whole balanced personal involvement with emotional distance in collecting and analyzing the data.
Karin van den Bosch, Anna Krzeminska, Eun Young Song, Lineke van Hal, Mitzi Waltz, Hannah Ebben, Alice Schippers
Contact
Karin van den Bosch
Email: karinvandenbosch.dsin@gmail.com