A mixed-methods study of autistic and non-autistic community member participation in autism research / Sarah L. CURTISS in Autism, 29-9 (September 2025)  

Public ISBD [article]  inAutism > 29-9 (September 2025) . - p.2268-2281 Titre : A mixed-methods study of autistic and non-autistic community member participation in autism research Type de document : texte imprimé Auteurs : Sarah L. CURTISS, Auteur ; Sarah TILLMAN, Auteur ; Majd SUBIH, Auteur ; Kaitlyn MYERS, Auteur Article en page(s) : p.2268-2281 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  qualitative research Index. décimale : PER Périodiques Résumé : Participatory research is one pathway for advancing the agenda of autistic advocates; however, little is known about the attitudes and values of autism researchers toward participatory research. This is a participatory research mixed-methods study of 215 survey respondents and 21 interviewees, all corresponding authors of published autism research papers. Our aim was to identify attitudes and practices about participatory research with autistic and non-autistic community partners. We found relatively low rates of various participatory strategies, moderate rates of barriers to participatory research, and moderate endorsement of the importance of participatory research. The interviews elucidated participatory research?s best practices, complexity of barriers, and transformative power to positively impact autism research. Interviewees discussed the connection between participatory research and decisions about language. The survey responses indicated that 30% of autism researchers never used identity-first language. An emergent theme from the interviews explored the unique contribution of insider research-research in which an autistic person brings their expertise derived from lived experience and formal research training. This research provides descriptions of the current state of participatory autism research and guidance for its utilization.Lay Abstract Participatory research is a way for autistic advocates, other community advocates, and researchers to work together for the benefit of the autistic community. Participatory research is when community members are partners throughout the research process, for example, selecting research questions, determining research methods, and interpreting results. However, little is known about autism researchers' attitudes and values about participatory research. This research describes the participatory research strategies autism researchers use, researchers' attitudes toward participatory research, and researchers' insights into best practices in participatory research. We looked at participatory autism research involving autistic people and non-autistic people who are connected to the autistic community, such as parents and teachers of autistic people. We surveyed 215 autism researchers to find out how much autism research is participatory, how important autism researchers think participatory research is, and what barriers get in the way of doing participatory autism research. On average, researchers who responded to the survey reported relatively low rates of participatory research, medium rates of barriers to participatory research, and medium agreement on the value of participatory research. The survey also asked what language they use regarding autism; a significant proportion of researchers in the study reported never using identity-first language (e.g., autistic person, as opposed to person-first language; person with autism). We also interviewed 21 of the researchers who responded to the survey. The interviews covered topics such as possible strategies to increase participatory research, examples of barriers to participatory research, and the interviewees' views on the importance of participatory research. Interviewees also discussed the connection between participatory research and decisions about language regarding autism. Several interviewees talked about the unique contributions of autistic academics, who have both lived experience as autistic people and formal research training. En ligne : https://dx.doi.org/10.1177/13623613251348543 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 [article] A mixed-methods study of autistic and non-autistic community member participation in autism research [texte imprimé] / Sarah L. CURTISS, Auteur ; Sarah TILLMAN, Auteur ; Majd SUBIH, Auteur ; Kaitlyn MYERS, Auteur . - p.2268-2281. Langues : Anglais (eng) in Autism > 29-9 (September 2025) . - p.2268-2281 Mots-clés : autism spectrum disorders  qualitative research Index. décimale : PER Périodiques Résumé : Participatory research is one pathway for advancing the agenda of autistic advocates; however, little is known about the attitudes and values of autism researchers toward participatory research. This is a participatory research mixed-methods study of 215 survey respondents and 21 interviewees, all corresponding authors of published autism research papers. Our aim was to identify attitudes and practices about participatory research with autistic and non-autistic community partners. We found relatively low rates of various participatory strategies, moderate rates of barriers to participatory research, and moderate endorsement of the importance of participatory research. The interviews elucidated participatory research?s best practices, complexity of barriers, and transformative power to positively impact autism research. Interviewees discussed the connection between participatory research and decisions about language. The survey responses indicated that 30% of autism researchers never used identity-first language. An emergent theme from the interviews explored the unique contribution of insider research-research in which an autistic person brings their expertise derived from lived experience and formal research training. This research provides descriptions of the current state of participatory autism research and guidance for its utilization.Lay Abstract Participatory research is a way for autistic advocates, other community advocates, and researchers to work together for the benefit of the autistic community. Participatory research is when community members are partners throughout the research process, for example, selecting research questions, determining research methods, and interpreting results. However, little is known about autism researchers' attitudes and values about participatory research. This research describes the participatory research strategies autism researchers use, researchers' attitudes toward participatory research, and researchers' insights into best practices in participatory research. We looked at participatory autism research involving autistic people and non-autistic people who are connected to the autistic community, such as parents and teachers of autistic people. We surveyed 215 autism researchers to find out how much autism research is participatory, how important autism researchers think participatory research is, and what barriers get in the way of doing participatory autism research. On average, researchers who responded to the survey reported relatively low rates of participatory research, medium rates of barriers to participatory research, and medium agreement on the value of participatory research. The survey also asked what language they use regarding autism; a significant proportion of researchers in the study reported never using identity-first language (e.g., autistic person, as opposed to person-first language; person with autism). We also interviewed 21 of the researchers who responded to the survey. The interviews covered topics such as possible strategies to increase participatory research, examples of barriers to participatory research, and the interviewees' views on the importance of participatory research. Interviewees also discussed the connection between participatory research and decisions about language regarding autism. Several interviewees talked about the unique contributions of autistic academics, who have both lived experience as autistic people and formal research training. En ligne : https://dx.doi.org/10.1177/13623613251348543 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566

The Nature of Family Meals: A New Vision of Families of Children with Autism / Sarah L. CURTISS in Journal of Autism and Developmental Disorders, 49-2 (February 2019)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 49-2 (February 2019) . - p.441-452 Titre : The Nature of Family Meals: A New Vision of Families of Children with Autism Type de document : texte imprimé Auteurs : Sarah L. CURTISS, Auteur ; Aaron T. EBATA, Auteur Article en page(s) : p.441-452 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders  Family processes  Mealtimes  Picky eating  Resilience Index. décimale : PER Périodiques Résumé : Families with children on the autism spectrum are often viewed in terms of their deficits rather than their strengths. Family meals are portrayed as sources of stress and struggle for parents and children. In this study, we take a resilience perspective to challenge underlying assumptions and get a more accurate picture of the nature of shared family meals. In-depth interviews were conducted and mealtimes were video recorded with 16 families for this thematic analysis. We identified four themes as being particularly salient to the mealtime experience: (1) schools and homework, (2) managing eating, (3) chores, and (4) intimate conversations. Our results elucidate the context of mealtimes as a site where parents struggle, yet negotiate, the challenges of everyday family life. En ligne : http://dx.doi.org/10.1007/s10803-018-3720-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=381 [article] The Nature of Family Meals: A New Vision of Families of Children with Autism [texte imprimé] / Sarah L. CURTISS, Auteur ; Aaron T. EBATA, Auteur . - p.441-452. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 49-2 (February 2019) . - p.441-452 Mots-clés : Autism spectrum disorders  Family processes  Mealtimes  Picky eating  Resilience Index. décimale : PER Périodiques Résumé : Families with children on the autism spectrum are often viewed in terms of their deficits rather than their strengths. Family meals are portrayed as sources of stress and struggle for parents and children. In this study, we take a resilience perspective to challenge underlying assumptions and get a more accurate picture of the nature of shared family meals. In-depth interviews were conducted and mealtimes were video recorded with 16 families for this thematic analysis. We identified four themes as being particularly salient to the mealtime experience: (1) schools and homework, (2) managing eating, (3) chores, and (4) intimate conversations. Our results elucidate the context of mealtimes as a site where parents struggle, yet negotiate, the challenges of everyday family life. En ligne : http://dx.doi.org/10.1007/s10803-018-3720-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=381

The Role of Acceptance in the Transition to Adulthood: A Multi-Informant Comparison of Practitioners, Families, and Youth with Autism / Gloria K. LEE in Journal of Autism and Developmental Disorders, 52-4 (April 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-4 (April 2022) . - p.1444-1457 Titre : The Role of Acceptance in the Transition to Adulthood: A Multi-Informant Comparison of Practitioners, Families, and Youth with Autism Type de document : texte imprimé Auteurs : Gloria K. LEE, Auteur ; Sarah L. CURTISS, Auteur ; Hung-Jen KUO, Auteur ; Jina CHUN, Auteur ; Heekyung LEE, Auteur ; Danielle D. NIMAKO, Auteur Article en page(s) : p.1444-1457 Langues : Anglais (eng) Mots-clés : Adolescent  Adult  Autism Spectrum Disorder  Autistic Disorder  Focus Groups  Humans  Parents  Young Adult  Acceptance  Autism  Families  Service providers  Young adults Index. décimale : PER Périodiques Résumé : This study investigated the role of acceptance during the transition process among autistic young adults, parents, and practitioners. Six focus groups were run and thematic analysis was used to identify four themes: Youth on the autism spectrum discussed transition as a time where Self-Advocacy and Self-Acceptance were salient. Both youth and parents discussed the Lack of Understanding and Acceptance they experience. Particularly, youth highlighted the lack of understanding of sensory needs and parents underscored the lack of understanding by medical professionals. In contrast, practitioners highlighted the presence of Community Openness. Both practitioners and parents discussed Finding Personal Support through Acceptance. Self-acceptance and acceptance of autism are imperative for autistic young adults and families to achieve well-being. En ligne : http://dx.doi.org/10.1007/s10803-021-05037-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475 [article] The Role of Acceptance in the Transition to Adulthood: A Multi-Informant Comparison of Practitioners, Families, and Youth with Autism [texte imprimé] / Gloria K. LEE, Auteur ; Sarah L. CURTISS, Auteur ; Hung-Jen KUO, Auteur ; Jina CHUN, Auteur ; Heekyung LEE, Auteur ; Danielle D. NIMAKO, Auteur . - p.1444-1457. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-4 (April 2022) . - p.1444-1457 Mots-clés : Adolescent  Adult  Autism Spectrum Disorder  Autistic Disorder  Focus Groups  Humans  Parents  Young Adult  Acceptance  Autism  Families  Service providers  Young adults Index. décimale : PER Périodiques Résumé : This study investigated the role of acceptance during the transition process among autistic young adults, parents, and practitioners. Six focus groups were run and thematic analysis was used to identify four themes: Youth on the autism spectrum discussed transition as a time where Self-Advocacy and Self-Acceptance were salient. Both youth and parents discussed the Lack of Understanding and Acceptance they experience. Particularly, youth highlighted the lack of understanding of sensory needs and parents underscored the lack of understanding by medical professionals. In contrast, practitioners highlighted the presence of Community Openness. Both practitioners and parents discussed Finding Personal Support through Acceptance. Self-acceptance and acceptance of autism are imperative for autistic young adults and families to achieve well-being. En ligne : http://dx.doi.org/10.1007/s10803-021-05037-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475

Where Does Hope Lie? The Dialectical Tensions Between Hopes and Expectations of Vocational Transition Planning from the Perspectives of Autistic Young Adults, Parents, and Practitioners / Sarah L. CURTISS ; Constance RICHARD ; Kaiqi ZHOU ; Yazmin Castruita RIOS ; Sara PARK ; Jaeyong KIM ; Muharrem KOC in Journal of Autism and Developmental Disorders, 55-5 (May 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-5 (May 2025) . - p.1857-1875 Titre : Where Does Hope Lie? The Dialectical Tensions Between Hopes and Expectations of Vocational Transition Planning from the Perspectives of Autistic Young Adults, Parents, and Practitioners Type de document : texte imprimé Auteurs : Sarah L. CURTISS, Auteur ; Constance RICHARD, Auteur ; Kaiqi ZHOU, Auteur ; Yazmin Castruita RIOS, Auteur ; Sara PARK, Auteur ; Jaeyong KIM, Auteur ; Muharrem KOC, Auteur Article en page(s) : p.1857-1875 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : The post-secondary transition for autistic youth is a complex process, with hopes and expectations serving as malleable mediators often overlooked in research and practice. Career awareness, exploration, and counseling services play a critical role in facilitating vocational transition, but the vocational hopes and expectations of autistic youth and their parents are often disregarded. This study aims to explore these aspirations and their impact on the vocational transition process, seeking to harmonize elements to better align with the needs of autistic youth and their families. This study used a focus group design involving group interviews with three participant groups: autistic transition-aged youth, parents, and practitioners. The findings reveal five key themes: 1) Accepting Disability or Constrained by Ableism: Resisting Marginalization, 2) Finding the Sweet Spot: Are Parents and Youth?s Expectations Too High or Too Low, 3) Market Forces at Work-Finding a Meaningful Vocational Path in a Capitalist Society, 4) Despite Meticulous Planning, there is a Disconnect Between Needs and Resources, and 5) The Hills and Valleys of Finding Resilience. Navigating the multifaceted landscape of vocational transition planning for autistic youth necessitates a collaborative and flexible approach. Identified tensions serve as opportunities for growth and transformation. Recognizing and addressing system shortcomings is crucial for informed decision-making. Challenges extend beyond individual circumstances, reflecting broader systemic issues, and identifying these gaps allows for a comprehensive understanding of available resources, cultivating a basis of hope as uncertainties are addressed. En ligne : https://doi.org/10.1007/s10803-024-06348-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554 [article] Where Does Hope Lie? The Dialectical Tensions Between Hopes and Expectations of Vocational Transition Planning from the Perspectives of Autistic Young Adults, Parents, and Practitioners [texte imprimé] / Sarah L. CURTISS, Auteur ; Constance RICHARD, Auteur ; Kaiqi ZHOU, Auteur ; Yazmin Castruita RIOS, Auteur ; Sara PARK, Auteur ; Jaeyong KIM, Auteur ; Muharrem KOC, Auteur . - p.1857-1875. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-5 (May 2025) . - p.1857-1875 Index. décimale : PER Périodiques Résumé : The post-secondary transition for autistic youth is a complex process, with hopes and expectations serving as malleable mediators often overlooked in research and practice. Career awareness, exploration, and counseling services play a critical role in facilitating vocational transition, but the vocational hopes and expectations of autistic youth and their parents are often disregarded. This study aims to explore these aspirations and their impact on the vocational transition process, seeking to harmonize elements to better align with the needs of autistic youth and their families. This study used a focus group design involving group interviews with three participant groups: autistic transition-aged youth, parents, and practitioners. The findings reveal five key themes: 1) Accepting Disability or Constrained by Ableism: Resisting Marginalization, 2) Finding the Sweet Spot: Are Parents and Youth?s Expectations Too High or Too Low, 3) Market Forces at Work-Finding a Meaningful Vocational Path in a Capitalist Society, 4) Despite Meticulous Planning, there is a Disconnect Between Needs and Resources, and 5) The Hills and Valleys of Finding Resilience. Navigating the multifaceted landscape of vocational transition planning for autistic youth necessitates a collaborative and flexible approach. Identified tensions serve as opportunities for growth and transformation. Recognizing and addressing system shortcomings is crucial for informed decision-making. Challenges extend beyond individual circumstances, reflecting broader systemic issues, and identifying these gaps allows for a comprehensive understanding of available resources, cultivating a basis of hope as uncertainties are addressed. En ligne : https://doi.org/10.1007/s10803-024-06348-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=554

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