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

Published online by Cambridge University Press:  21 September 2018

Karin E. van den Bosch Open the ORCID record for Karin E. van den Bosch [Opens in a new window] ,
Anna Krzeminska ,
Eun Young Song ,
Lineke B. E. van Hal ,
Mitzi M. Waltz ,
Hannah Ebben  and
Alice P. Schippers
Karin E. van den Bosch*
Affiliation:
Disability Studies, Department of Medical Humanities, Amsterdam UMC, Vrije Universiteit Amsterdam, De Boelelaan 1117, Amsterdam, Netherlands
Anna Krzeminska
Affiliation:
Department of Marketing and Management, Faculty of Business & Economics, Macquarie University, NSW, Australia
Eun Young Song
Affiliation:
Bartlett School of Construction & Project Management, University College London, London, UK
Lineke B. E. van Hal
Affiliation:
Verwey-Jonker Instituut, Kromme Nieuwegracht 6, Utrecht, Netherlands
Mitzi M. Waltz
Affiliation:
Disability Studies, Department of Medical Humanities, Amsterdam UMC, Vrije Universiteit Amsterdam, De Boelelaan 1117, Amsterdam, Netherlands Athena Institute, Faculty of Science, VU University Amsterdam, De Boelelaan 1085, Amsterdam, Netherlands
Hannah Ebben
Affiliation:
Disability Studies, Department of Medical Humanities, Amsterdam UMC, Vrije Universiteit Amsterdam, De Boelelaan 1117, Amsterdam, Netherlands Graduate School, Faculty of Development & Society, Sheffield Hallam University, Unit 9, Science Park, City Campus, Howard Street, Sheffield, UK
Alice P. Schippers
Affiliation:
Disability Studies, Department of Medical Humanities, Amsterdam UMC, Vrije Universiteit Amsterdam, De Boelelaan 1117, Amsterdam, Netherlands
*
*Corresponding author: karinvdbosch@gmail.com
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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.

Keywords

autismautism spectrum disorderconsumer-run organizationexperiential knowledgeself-advocacy
Type
Case Study
Information
Journal of Management & Organization , Volume 25 , Special Issue 4: Neurodiversity , July 2019 , pp. 464 - 480
Copyright
Copyright © Cambridge University Press and Australian and New Zealand Academy of Management 2018 

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