Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation

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.

Keywords:

• Autism
• ASD
• disability
• representation

This article is referred to by:

Neurodiversity and Autism Advocacy: Who Fits Under the Autism Tent?

Meaningful Fissures: The Value of Divergent Agendas in Patient Advocacy

Representing the Autism Spectrum

Like Autism, Representation Falls on a Spectrum

Civic Engagement, Autism and Deliberative Democracy: Prioritizing the Inclusion of Marginalized Perspectives

A Care Ethics Approach to Ethical Advocacy for Community Conditions

Beyond Autism: Advocacy for Neurodevelopmental Differences

Additional Challenges to Fair Representation in Autistic Advocacy

Representation Is Never Perfect, But Are Parents Even Representatives?

Non-Electoral Representation and Promoting Welfare—Beyond Descriptive Representation

Autistic Self Advocacy in the Developmental Disability Movement

Hope Springs Eternal: Pitfalls of Partial Representation by Advocates Who Only Want the Best

Autism Advocacy Before and After DSM-5

Parents of Autistic Children Are Deserving of Support

Patient Representation: Mind the Gap Between Individual and Collective Claims

Ethical Representation by Patient Advocacy Organizations Also Requires Responsible Management of Potential Financial Conflicts of Interest

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 2016). 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.