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

Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities / Dora M. RAYMAKER in Autism, 21-8 (November 2017)  

Public ISBD [article]  inAutism > 21-8 (November 2017) . - p.972-984 Titre : Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities Type de document : texte imprimé Auteurs : Dora M. RAYMAKER, Auteur ; Katherine E. MCDONALD, Auteur ; Elesia ASHKENAZY, Auteur ; Martha GERRITY, Auteur ; Amelia M. BAGGS, Auteur ; Clarissa KRIPKE, Auteur ; Sarah HOURSTON, Auteur ; Christina NICOLAIDIS, Auteur Année de publication : 2017 Article en page(s) : p.972-984 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist?Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n=74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n=67)), concern about cost (30% (n=62)), facilities causing sensory issues 30% ((n=62)), and difficulty communicating with providers (29% (n=61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2 0.8, p?< 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them. En ligne : https://doi.org/10.1177/1362361316661261 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=320 [article] Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities [texte imprimé] / Dora M. RAYMAKER, Auteur ; Katherine E. MCDONALD, Auteur ; Elesia ASHKENAZY, Auteur ; Martha GERRITY, Auteur ; Amelia M. BAGGS, Auteur ; Clarissa KRIPKE, Auteur ; Sarah HOURSTON, Auteur ; Christina NICOLAIDIS, Auteur . - 2017 . - p.972-984. Langues : Anglais (eng) in Autism > 21-8 (November 2017) . - p.972-984 Index. décimale : PER Périodiques Résumé : Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist?Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n=74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n=67)), concern about cost (30% (n=62)), facilities causing sensory issues 30% ((n=62)), and difficulty communicating with providers (29% (n=61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2 0.8, p?< 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them. En ligne : https://doi.org/10.1177/1362361316661261 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=320

The health status of adults on the autism spectrum / Lisa A. CROEN in Autism, 19-7 (October 2015)  

Public ISBD [article]  inAutism > 19-7 (October 2015) . - p.814-823 Titre : The health status of adults on the autism spectrum Type de document : texte imprimé Auteurs : Lisa A. CROEN, Auteur ; Ousseny ZERBO, Auteur ; Yinge QIAN, Auteur ; Maria L. MASSOLO, Auteur ; Steve RICH, Auteur ; Stephen SIDNEY, Auteur ; Clarissa KRIPKE, Auteur Année de publication : 2015 Article en page(s) : p.814-823 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  medical comorbidity  psychiatric comorbidity Index. décimale : PER Périodiques Résumé : Compared to the general pediatric population, children with autism have higher rates of co-occurring medical and psychiatric illnesses, yet very little is known about the general health status of adults with autism. The objective of this study was to describe the frequency of psychiatric and medical conditions among a large, diverse, insured population of adults with autism in the United States. Participants were adult members of Kaiser Permanente Northern California enrolled from 2008 to 2012. Autism spectrum disorder cases (N = 1507) were adults with autism spectrum disorder diagnoses (International Classification of Diseases-9-Clinical Modification codes 299.0, 299.8, 299.9) recorded in medical records on at least two separate occasions. Controls (N = 15,070) were adults without any autism spectrum disorder diagnoses sampled at a 10:1 ratio and frequency matched to cases on sex and age. Adults with autism had significantly increased rates of all major psychiatric disorders including depression, anxiety, bipolar disorder, obsessive–compulsive disorder, schizophrenia, and suicide attempts. Nearly all medical conditions were significantly more common in adults with autism, including immune conditions, gastrointestinal and sleep disorders, seizure, obesity, dyslipidemia, hypertension, and diabetes. Rarer conditions, such as stroke and Parkinson’s disease, were also significantly more common among adults with autism. Future research is needed to understand the social, healthcare access, and biological factors underlying these observations. En ligne : http://dx.doi.org/10.1177/1362361315577517 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269 [article] The health status of adults on the autism spectrum [texte imprimé] / Lisa A. CROEN, Auteur ; Ousseny ZERBO, Auteur ; Yinge QIAN, Auteur ; Maria L. MASSOLO, Auteur ; Steve RICH, Auteur ; Stephen SIDNEY, Auteur ; Clarissa KRIPKE, Auteur . - 2015 . - p.814-823. Langues : Anglais (eng) in Autism > 19-7 (October 2015) . - p.814-823 Mots-clés : adults  autism spectrum disorders  medical comorbidity  psychiatric comorbidity Index. décimale : PER Périodiques Résumé : Compared to the general pediatric population, children with autism have higher rates of co-occurring medical and psychiatric illnesses, yet very little is known about the general health status of adults with autism. The objective of this study was to describe the frequency of psychiatric and medical conditions among a large, diverse, insured population of adults with autism in the United States. Participants were adult members of Kaiser Permanente Northern California enrolled from 2008 to 2012. Autism spectrum disorder cases (N = 1507) were adults with autism spectrum disorder diagnoses (International Classification of Diseases-9-Clinical Modification codes 299.0, 299.8, 299.9) recorded in medical records on at least two separate occasions. Controls (N = 15,070) were adults without any autism spectrum disorder diagnoses sampled at a 10:1 ratio and frequency matched to cases on sex and age. Adults with autism had significantly increased rates of all major psychiatric disorders including depression, anxiety, bipolar disorder, obsessive–compulsive disorder, schizophrenia, and suicide attempts. Nearly all medical conditions were significantly more common in adults with autism, including immune conditions, gastrointestinal and sleep disorders, seizure, obesity, dyslipidemia, hypertension, and diabetes. Rarer conditions, such as stroke and Parkinson’s disease, were also significantly more common among adults with autism. Future research is needed to understand the social, healthcare access, and biological factors underlying these observations. En ligne : http://dx.doi.org/10.1177/1362361315577517 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269

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