Support on whose terms? Competing meanings of support aimed at autistic people

Bertilsdotter Rosqvist, Hanna; Milton, Damien and O'Dell, Lindsay (2022). Support on whose terms? Competing meanings of support aimed at autistic people. In: Milton, Damien and Ryan, Sara eds. Routledge International Handbook of Critical Autism Studies. Routledge International Handbooks. Abingdon, Oxon: Routledge, pp. 182–193.



Commentators on the “autism wars” (Orsini 2009; Chamak 2008) illustrate the competing meanings of autism and what is required in terms of support for autistic people. Meanings have been produced as different autistic knowledges (where knowledge is produced by autistic people, such as formulated within groups of autistic self-advocates, adults and academics) and as knowledges of autism (as knowledge produced by non-autistic people, such as formulated within groups of non-autistic parents of autistic children, academics and professionals). These knowledges have competed over rights of interpretation including formulating best practice in support aimed at autistic people. In this chapter we conceptualise these claims to knowledge and rights of interpretation in terms of struggles within and between different epistemological communities for authority with a particular focus on support.

We use the conceptual tools of epistemological community and epistemic authority to think about different languages at play within epistemic communities that serve to define and produce meanings of support for autistic people. The conceptualisation of epistemic communities and epistemic authority helps us think through how meanings of support aimed at autistic people are spoken of in different support contexts and to think through positions in relation to autism, specifically in the move for autistic young people to adulthood. This analytic is useful to examine how some knowledges become shared and powerful across communities whilst others remain within a particular community.

In the following sections we identify the languages at play in the conversations about support aimed at autistic people that we have had with people representing different epistemic communities, situated in different, but in certain ways also similar, contexts. We are using ‘languages’ as a way of referencing context, both linguistic (conversations across English and Swedish) but also across autistic/non-autistic worlds and academic/practice. To illustrate our arguments, we will draw on a series of conversations we have had with each other and with others in Sweden and the UK. The discussions took place in a time when, in the UK and Sweden, counter narratives to the epistemic authority of medicalised and deficit understandings of autism were beginning to be evident in mainstream (non-autistic) discourse. Some were recorded and transcribed, others were informal. Our conversations took place in and from the perspective of different contexts: autism advocacy/activism, researcher, university based, practitioner/NGO, and also across the national contexts of Sweden and the UK. We examine how these conversations draw on different languages of autism and how these position autistic people in need of support. We are using ‘autistic people’ as a way of referring to people who identify with autism and ‘non-autistic’ people for those who do not.

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