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Auteur Steven K. KAPP
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Documents disponibles écrits par cet auteur (22)
Faire une suggestion Affiner la rechercheAddressing Common Problems in Autism Research: Cohort Development and Sample Description for a Participatory, Real-World, Longitudinal Study of Outcomes in Autistic Adults / Christina NICOLAIDIS in Autism, 30-10 (October 2026)
Titre : Addressing Common Problems in Autism Research: Cohort Development and Sample Description for a Participatory, Real-World, Longitudinal Study of Outcomes in Autistic Adults Type de document : texte imprimé Auteurs : Christina NICOLAIDIS, Auteur ; Ian MOURA, Auteur ; Mary BAKER-ERICZEN, Auteur ; Mirah SCHARER, Auteur ; Joelle MASLAK, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Willi HORNER-JOHNSON, Auteur ; Julia LOVE, Auteur ; Dora M. RAYMAKER, Auteur ; Andrea JOYCE, Auteur ; Shannon DES ROCHES ROSA, Auteur ; Grace A. HERBERT, Auteur ; Julie Lounds TAYLOR, Auteur ; Liu-Qin YANG, Auteur ; Katherine MCDONALD, Auteur ; Zack SIDDEEK, Auteur ; Steven K. KAPP, Auteur ; Emanuel FROWNER, Auteur ; Ivanova SMITH, Auteur ; Anna Furra WALLINGTON, Auteur ; K.J. FLORES, Auteur ; Noah KAUFMAN, Auteur ; Clarissa KRIPKE, Auteur ; Joseph VERA, Auteur ; Vivian D. GRILLO, Auteur ; Finn GARDINER, Auteur Article en page(s) : p.2628-2647 Langues : Anglais (eng) Mots-clés : adults populations outcome measurement methods community based participatory research participatory methods longitudinal research health services contexts Index. décimale : PER Périodiques Résumé : Adult autism services research is plagued by methodological challenges, including difficulty obtaining representative or heterogeneous samples and a frequent mismatch between experimental methodologies and real-world settings. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Outcomes Project used a community-based participatory research (CBPR) approach to (a) create the AASPIRE Measurement Toolkit – a set of self- and caregiver-reported accessible outcome measures to evaluate health and social services and (b) explore factors predicting changes in outcomes. We previously used a CBPR-nested Delphi process to identify high-priority outcomes and adapted or created instruments to measure them. We conducted a longitudinal survey to validate these measures in a pragmatic sample of autistic adults with subcohorts from two health care systems, two disability service systems, and the larger autistic community in the United States. This article (a) describes our study methods and the sample’s baseline characteristics and (b) compares characteristics among participants in the separate subcohorts and sites. We collected baseline data from 870 participants. Follow-up response rates were >80% for the second and third time points. The sample includes strong heterogeneity. As expected, sample characteristics differed markedly between the three subcohorts. Lessons from our experience may help other researchers devise strategies to effectively recruit heterogeneous samples of autistic adults across various settings.Lay Abstract There are many challenges that can get in the way of doing good research on autism in adulthood. Examples of these types of challenges include the following: (a) it can be hard to include autistic people with a wide range of characteristics in research studies and (b) traditional research may come up with results that do not really apply to people in the real world. Academic Autism Spectrum Partnership in Research and Education (AASPIRE) is a group of academics and autistic community members who work together as equal partners. We are creating the AASPIRE Measurement Toolkit, an accessible set of survey measures about the health and life outcomes most important to autistic adults. In an earlier part of the project, we worked together to create the measures in the Toolkit. Now we are doing a big survey study to test the new measures and look at what predicts changes in outcomes over time. This article describes our study methods and the characteristics of the people in the sample. It also compares basic information about people recruited to the study from different places, using different methods. We recruited 870 autistic adults from two health care centers (the health care subgroup); two disability services systems (the disability subgroup); and the broader autistic community. We collected data from each person three times over 12 to 18 months. Over 80% of study participants did the follow-up surveys. People in the study had a wide range of personal and disability-related characteristics. As we predicted, the three subgroups were really different from each other. Even the two sites within the subgroups were a bit different. This serves as a warning to researchers: results that come from people recruited from one setting may not apply to people in other settings. It also shows how using multiple different strategies at the same time can increase the diversity in study samples. En ligne : https://dx.doi.org/10.1177/13623613261476381 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593
in Autism > 30-10 (October 2026) . - p.2628-2647[article] Addressing Common Problems in Autism Research: Cohort Development and Sample Description for a Participatory, Real-World, Longitudinal Study of Outcomes in Autistic Adults [texte imprimé] / Christina NICOLAIDIS, Auteur ; Ian MOURA, Auteur ; Mary BAKER-ERICZEN, Auteur ; Mirah SCHARER, Auteur ; Joelle MASLAK, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Willi HORNER-JOHNSON, Auteur ; Julia LOVE, Auteur ; Dora M. RAYMAKER, Auteur ; Andrea JOYCE, Auteur ; Shannon DES ROCHES ROSA, Auteur ; Grace A. HERBERT, Auteur ; Julie Lounds TAYLOR, Auteur ; Liu-Qin YANG, Auteur ; Katherine MCDONALD, Auteur ; Zack SIDDEEK, Auteur ; Steven K. KAPP, Auteur ; Emanuel FROWNER, Auteur ; Ivanova SMITH, Auteur ; Anna Furra WALLINGTON, Auteur ; K.J. FLORES, Auteur ; Noah KAUFMAN, Auteur ; Clarissa KRIPKE, Auteur ; Joseph VERA, Auteur ; Vivian D. GRILLO, Auteur ; Finn GARDINER, Auteur . - p.2628-2647.
Langues : Anglais (eng)
in Autism > 30-10 (October 2026) . - p.2628-2647
Mots-clés : adults populations outcome measurement methods community based participatory research participatory methods longitudinal research health services contexts Index. décimale : PER Périodiques Résumé : Adult autism services research is plagued by methodological challenges, including difficulty obtaining representative or heterogeneous samples and a frequent mismatch between experimental methodologies and real-world settings. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Outcomes Project used a community-based participatory research (CBPR) approach to (a) create the AASPIRE Measurement Toolkit – a set of self- and caregiver-reported accessible outcome measures to evaluate health and social services and (b) explore factors predicting changes in outcomes. We previously used a CBPR-nested Delphi process to identify high-priority outcomes and adapted or created instruments to measure them. We conducted a longitudinal survey to validate these measures in a pragmatic sample of autistic adults with subcohorts from two health care systems, two disability service systems, and the larger autistic community in the United States. This article (a) describes our study methods and the sample’s baseline characteristics and (b) compares characteristics among participants in the separate subcohorts and sites. We collected baseline data from 870 participants. Follow-up response rates were >80% for the second and third time points. The sample includes strong heterogeneity. As expected, sample characteristics differed markedly between the three subcohorts. Lessons from our experience may help other researchers devise strategies to effectively recruit heterogeneous samples of autistic adults across various settings.Lay Abstract There are many challenges that can get in the way of doing good research on autism in adulthood. Examples of these types of challenges include the following: (a) it can be hard to include autistic people with a wide range of characteristics in research studies and (b) traditional research may come up with results that do not really apply to people in the real world. Academic Autism Spectrum Partnership in Research and Education (AASPIRE) is a group of academics and autistic community members who work together as equal partners. We are creating the AASPIRE Measurement Toolkit, an accessible set of survey measures about the health and life outcomes most important to autistic adults. In an earlier part of the project, we worked together to create the measures in the Toolkit. Now we are doing a big survey study to test the new measures and look at what predicts changes in outcomes over time. This article describes our study methods and the characteristics of the people in the sample. It also compares basic information about people recruited to the study from different places, using different methods. We recruited 870 autistic adults from two health care centers (the health care subgroup); two disability services systems (the disability subgroup); and the broader autistic community. We collected data from each person three times over 12 to 18 months. Over 80% of study participants did the follow-up surveys. People in the study had a wide range of personal and disability-related characteristics. As we predicted, the three subgroups were really different from each other. Even the two sites within the subgroups were a bit different. This serves as a warning to researchers: results that come from people recruited from one setting may not apply to people in other settings. It also shows how using multiple different strategies at the same time can increase the diversity in study samples. En ligne : https://dx.doi.org/10.1177/13623613261476381 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593
Titre : Can the Five Factor Model of Personality Account for the Variability of Autism Symptom Expression? Multivariate Approaches to Behavioral Phenotyping in Adult Autism Spectrum Disorder Type de document : texte imprimé Auteurs : Benjamin C. SCHWARTZMAN, Auteur ; Jeffrey J. WOOD, Auteur ; Steven K. KAPP, Auteur Année de publication : 2016 Article en page(s) : p.253-272 Langues : Anglais (eng) Mots-clés : Big Five Five factor model of personality Adults with autism Autism Big 5 Autism spectrum disorder Subtypes of autism Index. décimale : PER Périodiques Résumé : The present study aimed to: determine the extent to which the five factor model of personality (FFM) accounts for variability in autism spectrum disorder (ASD) symptomatology in adults, examine differences in average FFM personality traits of adults with and without ASD and identify distinct behavioral phenotypes within ASD. Adults (N = 828; nASD = 364) completed an online survey with an autism trait questionnaire and an FFM personality questionnaire. FFM facets accounted for 70 % of variance in autism trait scores. Neuroticism positively correlated with autism symptom severity, while extraversion, openness to experience, agreeableness, and conscientiousness negatively correlated with autism symptom severity. Four FFM subtypes emerged within adults with ASD, with three subtypes characterized by high neuroticism and none characterized by lower-than-average neuroticism. En ligne : http://dx.doi.org/10.1007/s10803-015-2571-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=278
in Journal of Autism and Developmental Disorders > 46-1 (January 2016) . - p.253-272[article] Can the Five Factor Model of Personality Account for the Variability of Autism Symptom Expression? Multivariate Approaches to Behavioral Phenotyping in Adult Autism Spectrum Disorder [texte imprimé] / Benjamin C. SCHWARTZMAN, Auteur ; Jeffrey J. WOOD, Auteur ; Steven K. KAPP, Auteur . - 2016 . - p.253-272.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 46-1 (January 2016) . - p.253-272
Mots-clés : Big Five Five factor model of personality Adults with autism Autism Big 5 Autism spectrum disorder Subtypes of autism Index. décimale : PER Périodiques Résumé : The present study aimed to: determine the extent to which the five factor model of personality (FFM) accounts for variability in autism spectrum disorder (ASD) symptomatology in adults, examine differences in average FFM personality traits of adults with and without ASD and identify distinct behavioral phenotypes within ASD. Adults (N = 828; nASD = 364) completed an online survey with an autism trait questionnaire and an FFM personality questionnaire. FFM facets accounted for 70 % of variance in autism trait scores. Neuroticism positively correlated with autism symptom severity, while extraversion, openness to experience, agreeableness, and conscientiousness negatively correlated with autism symptom severity. Four FFM subtypes emerged within adults with ASD, with three subtypes characterized by high neuroticism and none characterized by lower-than-average neuroticism. En ligne : http://dx.doi.org/10.1007/s10803-015-2571-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=278
Titre : Changing College Students’ Conceptions of Autism: An Online Training to Increase Knowledge and Decrease Stigma Type de document : texte imprimé Auteurs : Kristen GILLESPIE-LYNCH, Auteur ; Patricia J. BROOKS, Auteur ; Fumio SOMEKI, Auteur ; Rita OBEID, Auteur ; Christina SHANE-SIMPSON, Auteur ; Steven K. KAPP, Auteur ; Nidal DAOU, Auteur ; David SHANE SMITH, Auteur Année de publication : 2015 Article en page(s) : p.2553-2566 Langues : Anglais (eng) Mots-clés : Stigma associated with autism Knowledge of autism Online training College students ASD Index. décimale : PER Périodiques Résumé : College students with autism may be negatively impacted by lack of understanding about autism on college campuses. Thus, we developed an online training to improve knowledge and decrease stigma associated with autism among college students. Participants (N = 365) completed a pre-test, online training, and post-test. Women reported lower stigma towards autism than men. Participation in the training was associated with decreased stigma and increased knowledge about autism. Although participants exhibited relatively high baseline knowledge of autism, misconceptions were common, particularly in open-ended responses. Participants commonly confused autism with other disorders, such as learning disabilities. This study suggests that online training may be a cost-effective way to increase college students’ understanding and acceptance of their peers with autism. En ligne : http://dx.doi.org/10.1007/s10803-015-2422-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=263
in Journal of Autism and Developmental Disorders > 45-8 (August 2015) . - p.2553-2566[article] Changing College Students’ Conceptions of Autism: An Online Training to Increase Knowledge and Decrease Stigma [texte imprimé] / Kristen GILLESPIE-LYNCH, Auteur ; Patricia J. BROOKS, Auteur ; Fumio SOMEKI, Auteur ; Rita OBEID, Auteur ; Christina SHANE-SIMPSON, Auteur ; Steven K. KAPP, Auteur ; Nidal DAOU, Auteur ; David SHANE SMITH, Auteur . - 2015 . - p.2553-2566.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 45-8 (August 2015) . - p.2553-2566
Mots-clés : Stigma associated with autism Knowledge of autism Online training College students ASD Index. décimale : PER Périodiques Résumé : College students with autism may be negatively impacted by lack of understanding about autism on college campuses. Thus, we developed an online training to improve knowledge and decrease stigma associated with autism among college students. Participants (N = 365) completed a pre-test, online training, and post-test. Women reported lower stigma towards autism than men. Participation in the training was associated with decreased stigma and increased knowledge about autism. Although participants exhibited relatively high baseline knowledge of autism, misconceptions were common, particularly in open-ended responses. Participants commonly confused autism with other disorders, such as learning disabilities. This study suggests that online training may be a cost-effective way to increase college students’ understanding and acceptance of their peers with autism. En ligne : http://dx.doi.org/10.1007/s10803-015-2422-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=263
Titre : Community views of neurodiversity, models of disability and autism intervention: Mixed methods reveal shared goals and key tensions Type de document : texte imprimé Auteurs : Patrick DWYER, Auteur ; Ava GURBA, Auteur ; Steven K. KAPP, Auteur ; Elizabeth KILGALLON, Auteur ; Lynnette H HERSH, Auteur ; David S CHANG, Auteur ; Susan M. RIVERA, Auteur ; Kristen GILLESPIE-LYNCH, Auteur Article en page(s) : p.2297-2314 Langues : Anglais (eng) Mots-clés : autism intervention goals neurodiversity normalization social model Index. décimale : PER Périodiques Résumé : Controversies regarding the neurodiversity movement may be exacerbated by confusion over its meaning. For example, some suggest neurodiversity entails acceptance of the social model, whereas others describe it as more nuanced. We aimed to help resolve conflicting viewpoints by inviting insights from 504 autistic and autism community members (278 autistic, 226 non-autistic), including 100 researchers (41 autistic), 122 professionals (35 autistic) and 162 parents/caregivers (53 autistic). They rated the neurodiversity movement, social model, medical model and intervention goals, and answered open-ended questions regarding the meaning of neurodiversity, the neurodiversity movement and disability models. Neurodiversity movement support was associated with endorsing societal reform and making environments more supportive, and lower support for normalization and adaptive skill interventions, though teaching adaptive skills was widely supported overall. Although participants often suggested the social model attributes disability solely to society, this 'strong' view was not universal. 'Strong' social model supporters still endorsed some interventions targeting individuals' characteristics (specifically, teaching adaptive skills, curing depression and epilepsy). Findings confirm that neurodiversity movement supporters denounce normalization, but are open to individualized supports. Findings highlight strong support for autistic leadership (especially among autistic people, including autistic parents) and for societal reform, and suggest that oversimplified rhetoric may cause confusion regarding advocates' views.Lay abstract What is already known about the topic? Some people support the neurodiversity movement and other people criticize it. They often disagree about what the neurodiversity movement means. Confusion about what the neurodiversity movement is makes it hard for people to agree about how best to support autistic or disabled people.What does this article add? We studied autistic and autism community members' views on the neurodiversity movement and autism interventions. Most participants supported the neurodiversity movement. Support for the neurodiversity movement was related to wanting to change society and make places more comfortable for autistic people. Neurodiversity supporters felt autistic children should choose their own intervention goals and that autistic adults should help children choose goals. Neurodiversity supporters did not think autistic people should be taught to act less autistic. Both those agreeing and disagreeing with the neurodiversity movement said that it is important to help autistic people be well. Many participants said that society causes all the difficulties disabled people experience. Yet they were somewhat open to helping people grow by teaching them useful skills and trying to cure depression and epilepsy.Implications for practice, research or policy. To better help autistic people, we should listen to participants in this study. They called for improving society, building more spaces where autistic people feel comfortable and helping autistic people lead change. They warned against teaching autistic people to hide their autism. Critics of the neurodiversity movement should read this article to better understand what neurodiversity movement supporters believe. By taking time to learn from one another, we can work together to better support autistic people. En ligne : https://dx.doi.org/10.1177/13623613241273029 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566
in Autism > 29-9 (September 2025) . - p.2297-2314[article] Community views of neurodiversity, models of disability and autism intervention: Mixed methods reveal shared goals and key tensions [texte imprimé] / Patrick DWYER, Auteur ; Ava GURBA, Auteur ; Steven K. KAPP, Auteur ; Elizabeth KILGALLON, Auteur ; Lynnette H HERSH, Auteur ; David S CHANG, Auteur ; Susan M. RIVERA, Auteur ; Kristen GILLESPIE-LYNCH, Auteur . - p.2297-2314.
Langues : Anglais (eng)
in Autism > 29-9 (September 2025) . - p.2297-2314
Mots-clés : autism intervention goals neurodiversity normalization social model Index. décimale : PER Périodiques Résumé : Controversies regarding the neurodiversity movement may be exacerbated by confusion over its meaning. For example, some suggest neurodiversity entails acceptance of the social model, whereas others describe it as more nuanced. We aimed to help resolve conflicting viewpoints by inviting insights from 504 autistic and autism community members (278 autistic, 226 non-autistic), including 100 researchers (41 autistic), 122 professionals (35 autistic) and 162 parents/caregivers (53 autistic). They rated the neurodiversity movement, social model, medical model and intervention goals, and answered open-ended questions regarding the meaning of neurodiversity, the neurodiversity movement and disability models. Neurodiversity movement support was associated with endorsing societal reform and making environments more supportive, and lower support for normalization and adaptive skill interventions, though teaching adaptive skills was widely supported overall. Although participants often suggested the social model attributes disability solely to society, this 'strong' view was not universal. 'Strong' social model supporters still endorsed some interventions targeting individuals' characteristics (specifically, teaching adaptive skills, curing depression and epilepsy). Findings confirm that neurodiversity movement supporters denounce normalization, but are open to individualized supports. Findings highlight strong support for autistic leadership (especially among autistic people, including autistic parents) and for societal reform, and suggest that oversimplified rhetoric may cause confusion regarding advocates' views.Lay abstract What is already known about the topic? Some people support the neurodiversity movement and other people criticize it. They often disagree about what the neurodiversity movement means. Confusion about what the neurodiversity movement is makes it hard for people to agree about how best to support autistic or disabled people.What does this article add? We studied autistic and autism community members' views on the neurodiversity movement and autism interventions. Most participants supported the neurodiversity movement. Support for the neurodiversity movement was related to wanting to change society and make places more comfortable for autistic people. Neurodiversity supporters felt autistic children should choose their own intervention goals and that autistic adults should help children choose goals. Neurodiversity supporters did not think autistic people should be taught to act less autistic. Both those agreeing and disagreeing with the neurodiversity movement said that it is important to help autistic people be well. Many participants said that society causes all the difficulties disabled people experience. Yet they were somewhat open to helping people grow by teaching them useful skills and trying to cure depression and epilepsy.Implications for practice, research or policy. To better help autistic people, we should listen to participants in this study. They called for improving society, building more spaces where autistic people feel comfortable and helping autistic people lead change. They warned against teaching autistic people to hide their autism. Critics of the neurodiversity movement should read this article to better understand what neurodiversity movement supporters believe. By taking time to learn from one another, we can work together to better support autistic people. En ligne : https://dx.doi.org/10.1177/13623613241273029 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566
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