Including Speaking and Nonspeaking Autistic Voice in Research

Abstract

Autistic individuals frequently report that their experiences are minimized or reinterpreted by well-meaning nonautistic parents, researchers, educators, and allies. Although the inclusion of autistic voice is improving, obstacles persist, particularly in research with individuals who might be described as non- or minimally speaking. In this perspective piece, I present three arguments: (1) ableist assumptions and practices that equate speaking voice with rational voice have led to the exclusion of autistic voice in research; (2) technologies such as augmentative and alternative communication, including computers and tablets, can be both emancipatory and oppressive; and (3) researchers who commit to the practice of ethical listening improve opportunities for non- or minimally speaking autistic individuals to participate in research.

Lay summary

1. Why is the inclusion of non- and minimally speaking voice in research important?

Although the inclusion of autistic voice in research is improving, non- and minimally speaking autistic voice is often left out. Autistic self-advocates challenge researchers to make sure that they consider the authentic experiences and diverse perspectives of non- and minimally speaking autistic individuals. Non- and minimally speaking individuals also remind nonautistic researchers that there are ways to participate in research besides with spoken words. This can broaden their own thinking and benefit their research. It also helps make sure that research topics and experiences are positive and meaningful to autistic individuals.

2. How can augmentative and alternative communication be both emancipatory and oppressive?

There are many reported benefits to using augmentative and alternative communication (AAC), including improved opportunities for non- or minimally speaking autistic individuals to communicate their thoughts and experiences to researchers. However, since the framework of AAC is built on an ableist assumption that verbal speech is better than other forms of communication, non- or minimally speaking autistic individuals may feel that their natural language is less valued.

3. How can ethical listening be used to support the inclusion of autistic voice in research?

Ethical listening happens when a person pays attention to all of the ways someone is communicating, including both speaking and nonspeaking forms of language. For example, they pay attention to a person's gestures and nonspeech sounds. Ethical listening improves the inclusion of autistic voice in research because it values nonspoken forms of communication and demonstrates to autistic people that they and their perspectives are important.