Nothing about us, without us: A case study of a consumer-run organization by and for people on the autism spectrum in the Netherlands

Karin van den Bosch · Anna Krzeminska · Eun Young Song · Lineke B. E. van Hal · Mitzi Waltz · Hannah Ebben

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Disability Education and Employment Disability Rights and Representation Mental Health and Patient Involvement

Abstract

Abstract 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.

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References

2014Diagnostic and Statistical Manual of Mental Disorders, 5th ed.2012Seeking Qualitative Rigor in Inductive Research 2013Purposeful Sampling for Qualitative Data Collection and Analysis in Mixed Method Implementation Research 2012Building Inclusive Markets in Rural Bangladesh: How Intermediaries Work Institutional Voids 2012Participatory Research Methods: A Methodological Approach in Motion 2011Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement 2010What is good action research?2009Neurodiversity, Quality of Life, and Autistic Adults: Shifting Research and Professional Focuses onto Real-Life Challenges

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