Addressing 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)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2628-2647 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 [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

Addressing the need for high quality research on autism in adulthood / Patricia HOWLIN in Autism, 19-7 (October 2015)  

Public ISBD [article]  inAutism > 19-7 (October 2015) . - p.771-773 Titre : Addressing the need for high quality research on autism in adulthood Type de document : texte imprimé Auteurs : Patricia HOWLIN, Auteur ; Julie LOUNDS TAYLOR, Auteur Année de publication : 2015 Article en page(s) : p.771-773 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/1362361315595582 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269 [article] Addressing the need for high quality research on autism in adulthood [texte imprimé] / Patricia HOWLIN, Auteur ; Julie LOUNDS TAYLOR, Auteur . - 2015 . - p.771-773. Langues : Anglais (eng) in Autism > 19-7 (October 2015) . - p.771-773 Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/1362361315595582 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269

Adolescents and Adults with Autism Spectrum Disorders / Marsha MAILICK SELTZER

Public ISBD in Autism Spectrum Disorders / David G. AMARAL Titre : Adolescents and Adults with Autism Spectrum Disorders Type de document : texte imprimé Auteurs : Marsha MAILICK SELTZER, Auteur ; Jan S. GREENBERG, Auteur ; Julie LOUNDS TAYLOR, Auteur ; Leann E. SMITH, Auteur ; Gael I. ORSMOND, Auteur ; Anna J. ESBENSEN, Auteur ; Jinkuk HONG, Auteur Année de publication : 2011 Importance : p.241-252 Langues : Anglais (eng) Index. décimale : AUT-B AUT-B - L'Autisme - Ouvrages généraux et scientifiques Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=139 in Autism Spectrum Disorders / David G. AMARAL Adolescents and Adults with Autism Spectrum Disorders [texte imprimé] / Marsha MAILICK SELTZER, Auteur ; Jan S. GREENBERG, Auteur ; Julie LOUNDS TAYLOR, Auteur ; Leann E. SMITH, Auteur ; Gael I. ORSMOND, Auteur ; Anna J. ESBENSEN, Auteur ; Jinkuk HONG, Auteur . - 2011 . - p.241-252. Langues : Anglais (eng) Index. décimale : AUT-B AUT-B - L'Autisme - Ouvrages généraux et scientifiques Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=139

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Advancing understanding of adults: The role of diagnostic confirmation and sample description / Vanessa H. BAL in Autism, 23-4 (May 2019)  

Public ISBD [article]  inAutism > 23-4 (May 2019) . - p.807-810 Titre : Advancing understanding of adults: The role of diagnostic confirmation and sample description Type de document : texte imprimé Auteurs : Vanessa H. BAL, Auteur ; Julie LOUNDS TAYLOR, Auteur Article en page(s) : p.807-810 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/1362361319847547 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=397 [article] Advancing understanding of adults: The role of diagnostic confirmation and sample description [texte imprimé] / Vanessa H. BAL, Auteur ; Julie LOUNDS TAYLOR, Auteur . - p.807-810. Langues : Anglais (eng) in Autism > 23-4 (May 2019) . - p.807-810 Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1177/1362361319847547 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=397

Associations between social activities and depressive symptoms in adolescents and young adults with autism spectrum disorder: Testing the indirect effects of loneliness / Linnea A. LAMPINEN ; Shuting ZHENG ; Virgina SULLIVAN ; Julie Lounds TAYLOR ; Somer L. BISHOP in Autism, 28-2 (February 2024)  

Public ISBD [article]  inAutism > 28-2 (February 2024) . - p.461?473 Titre : Associations between social activities and depressive symptoms in adolescents and young adults with autism spectrum disorder: Testing the indirect effects of loneliness Type de document : texte imprimé Auteurs : Linnea A. LAMPINEN, Auteur ; Shuting ZHENG, Auteur ; Virgina SULLIVAN, Auteur ; Julie Lounds TAYLOR, Auteur ; Somer L. BISHOP, Auteur Article en page(s) : p.461?473 Mots-clés : adolescents  adults  autism spectrum disorders  depression  social cognition and social behavior Index. décimale : PER Périodiques Résumé : To better understand the associations between social activities and depressive symptoms in adolescents and young adults with autism spectrum disorder, this study utilized interpersonal theories of depression by accounting for both frequency of various social activities and perceptions of how well their time spent in these activities meet their needs and testing the indirect effects of loneliness in this association. To test these ideas, 321 participants who were recruited from the Simons Foundation Powering Autism Research for Knowledge (SPARK) research match registry and completed online measures of social activities, depressive symptoms, and loneliness. While the specific pattern was different for individual activities, it was found that those who felt that their current frequency of activities did not meet their needs had higher rates of depressive symptoms than those who felt they did meet their needs and that loneliness help to understand the indirect effects of the association between social activities and depressive symptoms. Overall, the findings suggest that how individuals feel about the time they are spending in social activities, such as with friends and in general social activities, could impact outcomes such as depression and loneliness. Lay Abstract Previous studies have found that social activities and depressive symptoms in adolescents and young adults with autism spectrum disorder are related. To better understand the relationship between these issues, this study examined the frequency of various types of social activities as well as if the participants felt that the frequency of time spent in the activity met their personal needs. In addition, the role of loneliness was tested as a possible way to understand the relationship between activities and depressive symptoms. To test these ideas, 321 participants who were recruited from the Simons Foundation Powering Autism Research for Knowledge (SPARK) research match registry and completed online measures of social activities, depressive symptoms, and loneliness. While the specific pattern was different for individual activities, it was found that those who felt that their current frequency of activities did not meet their needs had higher rates of depressive symptoms than those who felt they did meet their needs. Also, loneliness helps to understand relationship between social activities and depressive symptoms. The findings were discussed in light of previous study findings, interpersonal theories of depression, and clinical implications. En ligne : https://dx.doi.org/10.1177/13623613231173859 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Associations between social activities and depressive symptoms in adolescents and young adults with autism spectrum disorder: Testing the indirect effects of loneliness [texte imprimé] / Linnea A. LAMPINEN, Auteur ; Shuting ZHENG, Auteur ; Virgina SULLIVAN, Auteur ; Julie Lounds TAYLOR, Auteur ; Somer L. BISHOP, Auteur . - p.461?473. in Autism > 28-2 (February 2024) . - p.461?473 Mots-clés : adolescents  adults  autism spectrum disorders  depression  social cognition and social behavior Index. décimale : PER Périodiques Résumé : To better understand the associations between social activities and depressive symptoms in adolescents and young adults with autism spectrum disorder, this study utilized interpersonal theories of depression by accounting for both frequency of various social activities and perceptions of how well their time spent in these activities meet their needs and testing the indirect effects of loneliness in this association. To test these ideas, 321 participants who were recruited from the Simons Foundation Powering Autism Research for Knowledge (SPARK) research match registry and completed online measures of social activities, depressive symptoms, and loneliness. While the specific pattern was different for individual activities, it was found that those who felt that their current frequency of activities did not meet their needs had higher rates of depressive symptoms than those who felt they did meet their needs and that loneliness help to understand the indirect effects of the association between social activities and depressive symptoms. Overall, the findings suggest that how individuals feel about the time they are spending in social activities, such as with friends and in general social activities, could impact outcomes such as depression and loneliness. Lay Abstract Previous studies have found that social activities and depressive symptoms in adolescents and young adults with autism spectrum disorder are related. To better understand the relationship between these issues, this study examined the frequency of various types of social activities as well as if the participants felt that the frequency of time spent in the activity met their personal needs. In addition, the role of loneliness was tested as a possible way to understand the relationship between activities and depressive symptoms. To test these ideas, 321 participants who were recruited from the Simons Foundation Powering Autism Research for Knowledge (SPARK) research match registry and completed online measures of social activities, depressive symptoms, and loneliness. While the specific pattern was different for individual activities, it was found that those who felt that their current frequency of activities did not meet their needs had higher rates of depressive symptoms than those who felt they did meet their needs. Also, loneliness helps to understand relationship between social activities and depressive symptoms. The findings were discussed in light of previous study findings, interpersonal theories of depression, and clinical implications. En ligne : https://dx.doi.org/10.1177/13623613231173859 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

Autism through midlife: trajectories of symptoms, behavioral functioning, and health / Jinkuk HONG in Journal of Neurodevelopmental Disorders, 15 (2023)  

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Autistic Youth Being Ignored by Peers: An Early-Stage Study / Nicoletta V. FRANKENSTEIN in Autism Research, 19-4 (April 2026)  

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Brief Report: ASD-Related Behavior Problems and Negative Peer Experiences Among Adolescents with ASD in General Education Settings / Ryan E. ADAMS in Journal of Autism and Developmental Disorders, 50-12 (December 2020)  

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Brief Report: Postsecondary Work and Educational Disruptions for Youth on the Autism Spectrum / Julie LOUNDS TAYLOR in Journal of Autism and Developmental Disorders, 47-12 (December 2017)  

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Brief report: Service implementation and maternal distress surrounding evaluation recommendations for young children diagnosed with autism / Zachary WARREN in Autism, 17-6 (November 2013)  

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Career patterns of adults with autism through late midlife / Emily J. HICKEY in Research in Autism, 133 (May 2026)  

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Change in Autism Symptoms and Maladaptive Behaviors in Adolescents and Adults with an Autism Spectrum Disorder / Paul T. SHATTUCK in Journal of Autism and Developmental Disorders, 37-9 (October 2007)  

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Changes in the Autism Behavioral Phenotype During the Transition to Adulthood / Julie LOUNDS TAYLOR in Journal of Autism and Developmental Disorders, 40-12 (December 2010)  

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Changes in the Mother–Child Relationship During the Transition to Adulthood for Youth with Autism Spectrum Disorders / Julie LOUNDS TAYLOR in Journal of Autism and Developmental Disorders, 41-10 (October 2011)  

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Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data / Katherine GOTHAM in Autism, 19-7 (October 2015)  

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