Capturing the lived experience of individuals with ASD using Autism Voices

The expression of autism spectrum disorder varies across individuals, particularly in perceived communication abilities in social settings. While some individuals on the ASD spectrum communicate verbally, others are non-verbal, and these different modalities of communication lead to different barriers to the expression of internal feelings or thoughts.

A 2021 research study aimed to develop a novel method of communication using research on ASD socialization and barriers to better allow individuals on the ASD spectrum to express themselves from a first-person perspective. This study, conducted by Courchesne et al., included 32 adolescents ranging in age from 11 to 18 years old. These participants met the criteria for ASD using the Autism Diagnostic Observation Schedule in at least the social domain and one other additional domain as identified by the Autism Diagnostic Interview-Revised. The participants were split into four categories of communication abilities: low nonverbal intelligence and minimally verbal, low non-verbal intelligence and verbal, average/high nonverbal intelligence and minimally verbal, and average/high nonverbal intelligence and verbal. All adolescents completed interviews on six general themes: school, family, future, autism experience, service utilization, and leisure. Depending on the category of communication in which they were placed, the adolescents completed interviews on the themes either using verbal questions or pictograms for question-asking and answering. After each interview, the interviewers reported back difficulties and successes of the interviews using various combinations of verbal and nonverbal methods in relaying intricacies and nuances of the interviewee’s ideas. Each interview was recorded and transcribed into a text script. While watching back the recordings, the researchers identified difficult to interpret verbal or body language cues of the interviewees. Using contextual clues and follow-up questions asked in the interviews, these cues were made into codes to more clearly indicate the thoughts, emotions, and intentions of the interviewees. Due to the presence of non-typical verbal phrases and body language that are often presented during socialization with people with ASD, these codes, collectively called Autism Voices, are aimed at better representing the first-person perspective of people with ASD. Particularly in ASD research where first-person interviews with individuals are imperative to the findings of the research, understanding nontraditional verbal and nonverbal cues are essential in moving the field forward to better individuals with ASD.

Although people with autism are often thought of as anti-social and inexpressive, this belief is not only unfounded but pushed by a society that views communication in a very structured way that does not allow for neurodiversity. Researchers noted that the responses of the interviewees when additional cues were accounted for were colorful, extensive, and thoughtful (Courchesne et al., 2021); rather than a lack of skill, people with ASD possess different yet equally important skills.

This dictionary of additional cues aims to expand what we know about human communication. Broadening our understandings of how different people communicate is essential in breaking down the stigmatization of groups, such as those with ASD. While this study is one of the first of its kind, creating Autism Voices, a novel dictionary for those who express themselves in alternative ways, is crucial to the accurate expression and representation of people with ASD in research and society moving forward.

Courchesne, V., Tesfaye, R., Mirenda, P., Nicholas, D., Mitchell, W., Singh, I., ... & Elsabbagh, M. (2021). Autism Voices: A novel method to access first-person perspective of autistic youth. Autism, 13623613211042128.