To the Editor:
In her article, “Including Speaking and Nonspeaking Autistic Voice in Research,”1 Chandra Lebenhagen argues that augmentative and alternative communication (AAC) is oppressive because it limits autistic voice. She posits that true autistic voice for nonspeakers is made up of “patterns of sound, gesture, movement, and silence.” AAC not only limits available vocabulary, but it also causes autistic people to communicate in a nonnative language. To address the limitations of AAC, she asks researchers to listen to movement as well as words.
This is a terrible idea. It is based on the assumption that researchers can accurately interpret the nonverbal communication of motorically challenged people. Accurate interpretation is not possible for autistics whose body language is not fully in their control. Behavior is often extremely misleading because it is impulsive, defensive against sensory assault, compulsive, uncoordinated, or triggered by emotions unrelated to current circumstances. The assumption that all behavior is a form of intentional communication is the primary reason that people who cannot coordinate movements to produce clear speech are presumed to have intellectual disabilities. Why would someone who cannot produce speech have the sensorimotor skills to produce nonverbal communication that is any clearer? As a nonspeaking autistic, I can tell you, we cannot.
Using social justice language to promote regressive ideas is insidious. For example, referring to people's adaptive AAC equipment as limiting rather than freeing is a common ableist trope. It can result in denial of access to important supports. Also, most nonspeakers do not want their behavior interpreted as communication because they have experienced the results. People get confused when professionals encourage them to suppress their natural tendency to assume that the weird movements that they observe are neurologically based. This is why it is much easier to work with people who do not know anything about autism. Their unconscious biases have not been shaped by exposure to “experts.” The author states that there is intrinsic value to doing what autistic nonspeakers have described as frustrating. It certainly does not make us feel respected and valued as the author suggests. Her idea has no evidence to support it, and is contradicted by the autistic authors she quotes. Let autistic nonspeakers tell researchers how to get our best participation. Talking over us and twisting our words to make a false point are the height of ableism.
If readers want to learn more from researchers who respect autistic voices, they can read the words and stories of nonspeaking adults in the books, Communication Alternatives in Autism: Perspectives on Typing and Spelling Approaches for the Nonspeaking and Leaders Around Me: Autobiographies of Autistics who Type, Point, & Spell to Communicate.2,3
Author Disclosure Statement
No competing financial interests exist.
References
- 1. Lebenhagen C. Including speaking and nonspeaking autistic voice in research. Autism Adulthood. 2020;2(2):128–131. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2. Peña EV. Communication Alternatives in Autism: Perspectives on Typing and Spelling Approaches for the Nonspeaking. Jefferson, NC: Toplight; 2019. [Google Scholar]
- 3. Peña EV. Leaders Around Me: Autobiographies of Autistics who Type, Point, & Spell to Communicate. ISBN 9781791505950. Thousand Oaks: Self-published; 2019. [Google Scholar]