@article{a14351a9824d4236abfae5cbc46011ff,
title = "Autism service preferences of parents/guardians and autistic adults in five countries",
abstract = "Scholars and activists debate whether people on the autism spectrum should access autism-specific services or general/inclusive/mainstream services. This article presents quantitative results from a mixed-methods survey of autistic adults and parents/guardians of autistic people in Canada, France, Germany, Italy, and the United States. Respondents reported categories of services used (autism-specific, mixed-disability, or general/inclusive/mainstream), satisfaction, and overall service preference. Most respondents preferred autism-specific services, followed by different categories of services for different service types. Demographic factors had little influence on overall service preferences. No significant differences were found between adults' and parents/guardians' overall service preferences. For parents/guardians, using autism-specific services was associated with a preference for autism-specific services. There were significant associations between the services respondents reported having previously used and their overall service preference. Parents/guardians in Italy and France reported lower satisfaction with many services. These results suggest that a preference for autism-specific services pervades different groups. While most respondents did endorse autism-specific services, the strong secondary preference for different service categories encourages providers and policy makers to attend to diverse needs. While satisfaction was generally middling to high, there remain areas for improvement, especially in general job training services. General services can use a Universal Design approach and collaborate with autism-specific and mixed-disability services to increase accessibility to diverse populations. The influence of previous service use on preferences suggests that providers can leverage strengths of existing services, leverage and create connections, and ask users about previous experiences to better address their expectations. Lay Summary: This study asked autistic adults and parents/guardians of autistic people what they think about autism services. Most parents/guardians and adults liked services that focus on autism, but many parents/guardians and adults liked them for some things and not others. All services can ask people about services they used in the past and learn from the strengths of good services through Universal Design and working with other services.",
keywords = "adults, autism, cross-national, parents, service preferences",
author = "Cascio, {M. Ariel} and Eric Racine",
note = "Funding Information: Kids Brain Health Network; NeuroEthics Excellence and Societal Innovation Core; IRCM Foundation; Angelo‐Pizzagalli Scholarship; Social Sciences and Humanities Research Council of Canada; Banting Postdoctoral Fellowship; Fonds de Recherche du Qu{\'e}bec ‐ Sant{\'e}; Senior Scholar Career Award Funding information Funding Information: Preliminary results from this study were presented at the American Anthropological Association Annual Meeting in 2018 (Cascio, M.A., Crafa, D., and E. Racine. 2018. Entanglements of Care in Autism Services in Europe and North America) and 2017 (Cascio, M.A. and E. Racine. 2017. The Biopolitics of Specificity: Autism Service Preferences in Europe and North America), both as oral presentations. This project was funded by a Kids Brain Health Network Core Award, the NeuroEthics Excellence and Societal Innovation Core (NESIC; Racine co‐PI). Dr. Cascio was additionally funded by the Angelo‐Pizzagalli Scholarship of the IRCM Foundation and the Social Sciences and Humanities Research Council of Canada's Banting Postdoctoral Fellowship. Dr. Racine was additionally funded by a FRQ‐S Senior Scholar Career Award. We thank Daina Crafa for work on a previous draft of this manuscript, as well as qualitative analysis on the broader project. We thank Gevorg Chilingaryan, Genevi{\`e}ve Lavigne, and Beth Bailey for statistical consulting in design and analysis; Wade Bittle (Plain Language Strategist, Convergent Knowledge, ckhealth@shaw.ca , Calgary, Alberta) for reviewing the survey for plain language and autism‐friendly accessibility; and Kiana Hummel for reviewing the final draft. We also thank the following people who contributed to this study via translation, back‐translation, community feedback, and/or research assistance: John Aspler, Morgane Aubineau, Aline Bogossian, Roxanne Caron, Dominique Cartier, Noha Elsherbini, Audrey Francouer, Laura Gilmour, Maria Imoli, Marianne Kania, Alice Larontonda, Ms. Lukas, Friedrich Nolte, Cristina Panisi, Sebastian Sattler, Anouk Sugar, and Enrico Valtellina. We also thank current and former members of the Pragmatic Health Ethics Research Unit for consistent feedback throughout this project, and sincerely apologize for any acknowledgments we have missed for assistance received over this lengthy and complex endeavor. Publisher Copyright: {\textcopyright} 2022 International Society for Autism Research and Wiley Periodicals LLC.",
year = "2022",
month = mar,
doi = "10.1002/aur.2667",
language = "English",
volume = "15",
pages = "570--585",
journal = "Autism Research",
issn = "1939-3792",
number = "3",
}