M Ariel Cascio1,2, Eric Racine1,2,3. 1. Pragmatic Health Ethics Research Unit, Institut de recherches cliniques de Montréal, Montréal, Quebec, Canada. 2. Department of Medicine (Division of Experimental Medicine), Department of Neurology and Neurosurgery, Biomedical Ethics Unit, McGill University, Montreal, Quebec, Canada. 3. Département de médicine, Département de médecine sociale et préventive, Université de Montréal, Montréal, Quebec, Canada.
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.
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.
Authors: Martina Micai; Francesca Fulceri; Tommaso Salvitti; Giovanna Romano; Luise Poustka; Robert Diehm; Georgi Iskrov; Rumen Stefanov; Quentin Guillon; Bernadette Rogé; Anthony Staines; Mary Rose Sweeney; Andrew Martin Boilson; Thora Leósdóttir; Evald Saemundsen; Irma Moilanen; Hanna Ebeling; Anneli Yliherva; Mika Gissler; Tarja Parviainen; Pekka Tani; Rafal Kawa; Eva Pisula; Astrid Vicente; Célia Rasga; Magdalena Budişteanu; Ian Dale; Carol Povey; Noelia Flores; Cristina Jenaro; Maria Luisa Monroy; Patricia García Primo; Tony Charman; Susanne Cramer; Christine Kloster Warberg; Ricardo Canal-Bedia; Manuel Posada; Diana Schendel; Maria Luisa Scattoni Journal: Front Psychiatry Date: 2022-06-10 Impact factor: 5.435