Abstract
Recent debates within the autism advocacy community have raised difficult questions about who can credibly act as a representative of a particular population and what responsibilities that role entails. We attempt to answer these questions by defending a set of evaluative criteria that can be used to assess the legitimacy of advocacy organizations and other nonelectoral representatives. With these criteria in hand, we identify a form of misrepresentation common but not unique to autism advocacy, which we refer to as partial representation. Partial representation occurs when an actor claims to represent a particular group of people but appropriately engages with only a subset of that group. After highlighting symbolic and substantive harms associated with partial representation, we propose several strategies for overcoming it.
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Disclosure Statement
One author (Lutz) has a child with autism.
Notes
1 Throughout the article we use identity-first language (e.g., autistic person, autistic adult), which tends to be preferred by autistic self-advocates, rather than person-first language (e.g., person with autism), which tends to be preferred by caregivers and family members (Haller Citation2016). Our intention is to respect the preferences of autistic self-advocates engaged in discussions about representation, though we do not mean to suggest that either type of terminology is categorically preferable.
2 The terms “high-functioning” and “low-functioning” have historically defined categories of autism for research and policy. More recently, however, there has been increasing concern that these terms may be stigmatizing and that they reduce the diversity of abilities and challenges associated with the spectrum to a single dimension. As such, we avoid using these terms.