Autism Voices: A novel method to access first-person perspective of autistic youth

Abstract

Opportunities to communicate first-person perspectives are essential for self-determination. However, many autistic youth are excluded from sharing their perspectives, specifically those who are minimally verbal or with lower intellectual functioning. Current challenges to capturing their voices include a lack of appropriate inclusive methodologies. Propose an inclusive strength-oriented method to capture first-person perspectives of autistic adolescents. Our protocol (“Autism Voices”) includes a pre-interview survey and semi-structured interview using universal design strategies. It was piloted with 33 participants who were representative of diverse language and cognitive abilities. A coding scheme was developed to identify communicative acts used by participants and mitigation strategies used by interviewers to enhance communication. Interviewer strategies that enhanced communication included question formulation, use of pictures, offering various output modalities, and flexible implementation of the protocol. Non-verbal and alternative communication responses (e.g. choosing to not respond) were informative to youth’s lived experience, especially for minimally verbal participants. Overall, our results highlight that communication goes beyond verbally answering questions and that participants’ unconventional communication conveyed rich information. Autism Voices provides a promising method to promote the inclusion of autistic youth in research. Lay Abstract The perspective of autistic individuals is often left uncaptured, and as a result they are often excluded from making decisions that impact them. Conventional communication can be challenging for many autistic individuals, especially those who are minimally verbal or who have an associated intellectual disability. Currently, a lack of appropriate methods to capture voices across the spectrum is a barrier. In the present study, we developed the Autism Voices protocol using universal design principles to capture the perspectives and experiences of autistic youth with a range of language or intellectual abilities. This protocol was then used with 33 autistic youth aged 11 to 18 years. A scoring rubric was developed to capture the unconventional communication used by the participants and the mitigation strategies used by interviewers to facilitate the interview. Many components of the protocol were found to effectively facilitate communication between the participant and interviewer, including the use of picture cards to support verbal questions/prompts, the fact that participants could respond with their preferred communication methods (writing, texting, pointing), and the fact that interviews were applied flexibly to adapt to each participant. Unconventional communication and mitigation strategies were mostly observed in interviews with minimally verbal individuals, but a fine-grained analysis showed participants were still communicating something through this unconventional communication. Our protocol could help promote the inclusion of more autistic individuals in research and showed that unconventional modes of communication like echolalia provide an understanding that participants’ are invested in conversations and certain topics are more meaningful than others.

Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework

“…Adequately monitoring these and other adverse events in clinical trials and clinical programs is yet another way to ensure an intervention is doing more good than harm (Bottema-Beutel et al, 2021a ; Dawson & Fletcher-Watson, 2021 ). Tesfaye et al ( 2019 ) also present alternative ways of capturing first-person perspectives in youth with disabilities, such as engaging in art and photography and sorting picture cards of activities into “like” versus “dislike” categories (also see Courchesne et al, 2021 ). This kind of “ethical listening” (that is, paying attention to what one is communicating through non-speaking means; Lebenhagen, 2019 ) is crucial to including the perspectives and preferences of all Autistic people.…”

“Can I play ball, too?” Using echolalia for increasing ASD youth verbal/non-verbal expressive/receptive communication through culturally competent action research using play/sensory therapies.

“…Tuchel (2022) discussed scripting in her work, noting it is a key feature of ASD youth language development. Courchesne, Tesfaye, Mirenda, Nicholas, Mitchell, Singh, Zwaigenbaum, Elsabbagh (2021) observed including youth and their strengths greatly benefits youth self-image and it clearly is crucial to meaningful research where the youth are stakeholders. Stringer (2007) identified action research can be: credible, analyzable, transparent, and useful.…”

Barriers to access and utilization of healthcare services for minority-language speakers with neurodevelopmental disorders: A scoping review

“…Furthermore, our review has highlighted a striking lack of studies with first person perspectives of people with NDDs themselves. Future research can build on recent advocacy and improved methods for capturing these perspectives ( 69 , 70 ) in order to build a more accurate picture of the lived experience of minority language speakers in healthcare.…”