Autism self-advocacy in the Netherlands: past, present and future

Samenvatting

Participatory research into the roles and practices of autistic self-advocates in the Netherlands, and the outcomes of their activities. The history of Dutch autism self-advocacy is described and situated within the history and practices of self-advocacy internationally and the socio-cultural context of the Netherlands. Particular reference is made to Judi Chamberlin’s model for building effective self-advocacy organisations.

 

Doelstelling

This research investigates the practices, roles and results of autistic self-advocates in the Netherlands. It sought to gain and analyse information about personal motivations,key sources of information and support, forms of organisation, goals, factors that facilitated successful self-advocacy, barriers to self-advocacy, and outcomes.The research documents the history of Dutch autism self-advocacy, situating it within the Dutch socio-cultural context and autism self-advocacy internationally.

Methode

Participatory qualitative research in which eight Dutch self-advocates who identify as people on the autism spectrum were interviewed. We used a semi-structured interview format, with attention to the communication style and preferences of people on the autism spectrum. Questions covered a range
of topics, including individual motivations, activities, barriers and successes. Participants were asked to comment on a variety of autism self-advocacy practices and organisations as well as their own work.

Resultaten

Key findings include the scope of significant achievements, and the identification of barriers to efficacy in the areas of governance, personal and organisational capacity, relationships with other organisations, and coalition-building.The research concludes by considering what practices could serve to build increased capacity and efficacy, based on the experiences of these and other self-advocates.

Projectinformatie

Research line
(Arbeids)participatie
Status
Afgerond
Year completed
2015

Personen

Researchers/ authors
Mitzi Waltz, Karin van den Bosch, Hannah Ebben, Lineke van Hal, Alice Schippers
Researchers / project members

Mitzi Waltz, Karin van den Bosch, Hannah Ebben, Lineke van Hal, Alice Schippers

Participation of people with disabilities

The team was comprised of four co-researchers – two with an autism-spectrum diagnosis, two without. A fifth co-researcher provided advice and assistance. Co-researchers with autism were academically qualified and worked on an equal basis with non-autistic researchers regarding discussions of study design, method, sample, parameters, ethics, processes and analysis.

People or organisations involved in the project

Mitzi Waltz, Karin van den Bosch, Hannah Ebben, Lineke van Hal, Alice Schippers

Contact

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