Samenvatting

A consumer-run organization is an organization that is governed and staffed by people with a serious mental illness. In my presentation I introduce the concept of ‘ consumer-run organization’ . I will argue that this concept can be used to describe PAS-Nederland as a consumer-run organization by and for adults with autism in the Netherlands. Then I discuss with you some results of my qualitative research project about consumer-run organizations, specifically PAS-Nederland, in the Netherlands. The problematic and powerful sides of being a CRO (in Dutch: een “voor en door organisatie”) will be discussed. Findings in the Netherlands are related to the international literature about CROs.

Relatie met het thema van Autminds 2016: (on)zichtbaarheid

Organizations by and for people with autism (consumer-run organizations or self-organizations) are not really, or sometimes not at all, visible. In the Netherlands these kind of organizations are well aware of each others existence, although the association and cooperation between these organizations can also be both powerful and/or problematic. On a European or European + VS level the visibility of non-English organizations and their work is troublesome. This is even more the case in the international scientific literature, since scientific articles have a strong tendency to focus on English speaking nations. Although the Dutch movement of people with autism is equally long existing as the UK movement (PAS originated several years before Autscape) this is not known in the international community of people with autism. Activities and accomplishments of PAS and its members and of other Dutch initiatives are not visible, and certainly not in the international arena. So this can give the wrong impression that UK and USA initiatives, like Autscape or ANI, are the only ones that exist, or the only ones worth mentioning. So far, to my knowledge, UK/USA initiatives are the only ones that attract attention by scientific researchers, and so get described in the international literature (with a onetime exception for a French organization).

Concluding: a lot of work still needs to be done before initiatives of people with autism in non-English speaking countries, like the Netherlands become visible, both in our own country and especially in an European or international context.

Presentatie

An organization run by people with autism: problem or power?