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

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          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.

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          Autism Diagnostic Interview-Revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders

          Describes the Autism Diagnostic Interview-Revised (ADI-R), a revision of the Autism Diagnostic Interview, a semistructured, investigator-based interview for caregivers of children and adults for whom autism or pervasive developmental disorders is a possible diagnosis. The revised interview has been reorganized, shortened, modified to be appropriate for children with mental ages from about 18 months into adulthood and linked to ICD-10 and DSM-IV criteria. Psychometric data are presented for a sample of preschool children.
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            Nonparametric estimation of Shannon’s index of diversity when there are unseen species in sample

            Journal of Autism and Developmental Disorders, 30(3), 205-223
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              Making the future together: Shaping autism research through meaningful participation

              Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people’s lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them.
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                Author and article information

                Journal
                Autism
                Autism
                AUT
                spaut
                Autism
                SAGE Publications (Sage UK: London, England )
                1362-3613
                1461-7005
                4 September 2021
                July 2022
                : 26
                : 5
                : 1123-1136
                Affiliations
                [1 ]McGill University, Canada
                [2 ]The University of British Columbia, Canada
                [3 ]University of Calgary, Canada
                [4 ]University of Oxford, UK
                [5 ]University of Alberta, Canada
                Author notes
                [*]Valérie Courchesne, Department of Neurology and Neurosurgery, McGill University, 3801 University street, H3A 2B4 Montreal, QC, Canada. Email: valerie.courchesne@ 123456gmail.com
                Author information
                https://orcid.org/0000-0001-7768-5448
                https://orcid.org/0000-0002-1924-4721
                https://orcid.org/0000-0002-1016-3589
                Article
                10.1177_13623613211042128
                10.1177/13623613211042128
                9340132
                34482746
                ae37f908-5cff-4f4c-93a9-b489d106a830
                © The Author(s) 2021

                This article is distributed under the terms of the Creative Commons Attribution 4.0 License ( https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                Funding
                Funded by: Wellcome Trust, FundRef https://doi.org/10.13039/100004440;
                Award ID: 104825/Z/14/Z awarded to I.S.
                Funded by: Wellcome Trust, FundRef https://doi.org/10.13039/100004440;
                Award ID: Wellcome Centre for Ethics and Humanities, support core funding 203132/Z/16/Z
                Funded by: Fonds de Recherche du Québec - Santé, FundRef https://doi.org/10.13039/501100000156;
                Award ID: doctoral fellowship awarded to R.T.
                Funded by: NIHR Oxford Health Biomedical Research Centre, ;
                Award ID: [IS-BRC-1215-20005] awarded to I.S.
                Funded by: Government of British Columbia, ;
                Funded by: canadian institutes of health research, FundRef https://doi.org/10.13039/501100000024;
                Funded by: Stollery Children’s Hospital Foundation Chair in Autism, ;
                Funded by: Azrieli Center for Autism Research, ;
                Funded by: fonds de recherche du québec - santé, FundRef https://doi.org/10.13039/501100000156;
                Funded by: NeuroDevNet, ;
                Categories
                Original Articles
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                adolescents,autism,first-person perspective,lived experience,qualitative research,semi-structured interview,strength-oriented method,universal design

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