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.
Keywords: autism, speaking and nonspeaking voice, augmentative and alternative communication, ethical listening, inclusive research
Introduction
Autistic self-advocates have begun to change the views and practices of nonautistic allies and researchers, including myself. I have 20 years of experience as an educator, researcher, and autism ally. However, the more I familiarize myself with the perspectives of speaking, minimally speaking, or nonspeaking autistic self-advocates, the more I become aware of how ableism continues to shape efforts aimed at improving the inclusion of autistic voice and recognition of autistic identity. Ableism is described as the beliefs and practices society uses to devalue and limit persons with disabilities.1 Disability studies researcher Pamela Saunders2 criticizes the primacy of expert opinion over insider knowledge and proposes that a radical shift needs to occur in autism discourse. We need to appreciate “ways of being that are not the ways of being.”3 According to Saunders, solidarity can be achieved between autistic individuals and nonautistic individuals “without erasing difference or capitulating to neurotypical expectations for public speech.”2
Thus, autistic voice should embrace any self-identified mode of expression, including speaking and nonspeaking patterns of sound, gesture, movement, and silence. To improve the recognition and inclusion of autistic voice in research, assumptions and practices that equate speaking voice with rational voice must change. For example, technologies such as AAC, including computers and tablets, enable communication through the use of words and symbols. However, they may require non- or minimally speaking autistic individuals to replace their natural language with speech-generated communication. Promisingly, through the practice of ethical listening, researchers can improve the inclusion of autistic voice in research while respecting the personhood of autism.
Assumptions and Practices That Equate Speaking Voice with Rational Voice
Human intelligence and reasoning ability are often assumed through a person's use of spoken language. A voice is considered sensible and rational when words are spoken clearly and independently, and less rational when speech is unclear and assisted.4 Belief systems and practices that equate speaking voice with rational voice5 have led to the exclusion of non- or minimally speaking autistic voice. Through social cultural practices, “certain forms of human variation,”6 including the ways in which we express ourselves, are normalized. Feminist scholar Sarah Ahmed suggests that oppressive belief systems seek to “assimilate difference back into the category of the same,”7 essentially rejecting human diversity, or “Otherness.”7 Adding to the problem of excluding non- or minimally speaking autistic voice in social, medical, and educational discourse8 is the reinterpretation of autistic experience by nonautistic researchers9,10 as “just autism talking.”3 Diagnostic tools such as the DSM-5 perpetuate ableist theories by stressing “persistent deficits in social communication and interaction across multiple contexts,”11 including idiosyncratic and repetitive use of verbal language. Such tools struggle to recognize other ways of being, let alone other ways of creating meaning.
Although the acceptance of autistic Otherness may occur more frequently in feminist and disability circles, “oral speech [continues to occupy] a dignified position…shaping central questions on what it is to be human.”6 As such, the preference for oral speech has had “exclusionary consequences,”6 even within antioppressive systems.
Autistic author and self-advocate Ido Kedar challenges professionals who make assumptions of autistic rationality based on speaking voice by stating:
There is an overwhelming need for professionals to learn about autism from those who live it and can describe it in words. I am referring to the nonspeaking typer who tries to explain autism from the inside out. There are now quite a few of us, and the number is growing. Our messages are always the same. Intact mind/disobeying body. Smart head/dumb body. Thinking mind/non-thinking motor system. Not speaking is not the same as not thinking.12
Researchers must recognize the burden placed on non- or minimally speaking autistic individuals to prove their intelligence and identity through spoken communication. By challenging notions of communicative normativity, autistic individuals have more freedom to self-represent their ideas and experiences in authentic nonconformist ways.
The Emancipatory and Oppressive Nature of AAC
AAC provides beneficial opportunities for non- or minimally speaking autistic individuals to express themselves and make social connections. However, the framework of AAC is built on ableist standards, including nonautistic representations of thoughts and experiences.13 Devices that use preprogrammed symbols, pictures, and words potentially draw a line between autistic and nonautistic experience. For instance, a person may want to share that he sees his mother's voice,14 however, he may not be able to if the appropriate vocabulary is unavailable to him. Consequently, his voice becomes muted and the legitimacy of his experience is denied. Autistic self-advocate Amelia Baggs challenges nonautistic assumptions of normative communication by expressing hirself through hir body and gestures. Sie calls this “the language we already spoke fluently before we learned that words existed… it requires innate, prolonged knowledge of a way of experiencing the world that most people aren't aware of.”15 Instances where non- or minimally speaking autistic individuals are expected to replace innate language with spoken communication highlight the conflicting nature of AAC.16 Although AAC facilitates communication according to social norms,17 they also disconnect the autistic individual from authentic ways of representing their thoughts and experiences.18 Replacing autistic language with nonautistic language may lead to repeated mis- or nonrecognition of autistic identity to be viewed as typical.19 Furthermore, the burden to self-translate experience into “textual thoughts”19 becomes unevenly placed on the non- or minimally speaking autistic individual.
Ethical Listening to Improve the Inclusion of Autistic Voice in Research
Listening is fundamental to how we make connections and experience our world. We listen for enjoyment, to build relationships, to learn, and to judge the accuracy or truthfulness of information. We listen to sound with our ears, but we also listen with our other senses, including sight, smell, and touch. Ethical listening means that we respectfully attend to multiple representations of human experience and knowledge with all of our senses. Ethical listening means that we refrain from judging a person or the merit of their communication based on difference. For example, while communicating with a nonspeaking typer, an ethical listener pays attention to body language in addition to the individual's typed response.
Traditionally, researchers construct knowledge through “dividing practices”20 including categorizing people according to age, gender, culture, sexuality, and concepts of ability.21 In autism studies, there is a tendency for researcher voice to take precedence over autistic voice, which results in the misrecognition or nonrecognition of autism.22 Parent and researcher Stuart Murray identifies a similar problem, stating that “Autism is frequently talked about, but it is rarely listened to.”23 Through social justice movements, including “nothing about us, without us,”24 unethical and exclusionary research practices are challenged. Autistic author Becca Lory describes feeling devalued by her research experience.25 She suggests that researchers need to look beyond the outcomes of their study and critically evaluate the methods and procedures they use to engage autistic participants.25
Ethical listening is beneficial because it encourages the self-representation of autistic experience and helps to stimulate new ways of designing and conducting research, including methods that are flexible and support the unique strengths of autistic individuals. Furthermore, ethical listening holds intrinsic benefits,26 as autistic individuals feel respected and valued27 for who they are.
Researchers who reflect on the ethics of their communicative practice signal to society that autistic speaking and nonspeaking voice and perspective matter. The practice of ethical listening requires self-awareness and intellectual flexibility to attend to diverse perspectives.20 Researchers who are self-aware take time for silent reflection, which reduces researcher impulse to intervene, objectify, and give opinion.20 Intellectual flexibility allows for multiple viewpoints to be included in the cocreation of knowledge and reduces authoritative stances on subject matter.28
In short, ethical listening brings differences together,28 even outside the use of spoken words.9 When ethical listening is used in research, it improves the inclusion of autistic voice and ensures that research experiences are positive and meaningful for autistic participants. Researchers who pay attention to autistic voice, both during and after the research experience, become skilled at codesigning studies that are relevant and select methods that empower rather than restrict autistic individuals.29
Conclusion
Autistic self-advocates challenge ableist assumptions and practices of communicative normativity, including preference for speaking voice over non- or minimally speaking voice. Autistic voice should embrace any self-identified mode of expression, including speaking and nonspeaking patterns of sound, gesture, movement, and silence. Although beneficial in many ways, technologies like AAC also perpetuate society's value and preference for speaking communication. Through the practice of ethical listening, researchers can improve the inclusion of authentic autistic voice in research, which has the added benefit of ensuring that research topics and experiences are positive and meaningful to autistic individuals.
Authorship Confirmation Statement
C.L. is the sole author of this article and it is based on original doctoral research. This article has been submitted solely to this Journal and has not been published or is in press elsewhere.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
No funding was received for this article.
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