Adverse Childhood Experiences and Health Outcomes Among Transition-Age Autistic Youth / Kiley J. MCLEAN ; Jordan GIFFORD ; Hailey KISSNER ; Rosalind SIPE in Journal of Autism and Developmental Disorders, 55-8 (August 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-8 (August 2025) . - p.2844-2857 Titre : Adverse Childhood Experiences and Health Outcomes Among Transition-Age Autistic Youth Type de document : texte imprimé Auteurs : Kiley J. MCLEAN, Auteur ; Jordan GIFFORD, Auteur ; Hailey KISSNER, Auteur ; Rosalind SIPE, Auteur Article en page(s) : p.2844-2857 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Adverse childhood experiences (ACEs) have been associated with poor health outcomes in the general population. However, their impact on autistic youth remains unclear. En ligne : https://doi.org/10.1007/s10803-024-06401-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=565 [article] Adverse Childhood Experiences and Health Outcomes Among Transition-Age Autistic Youth [texte imprimé] / Kiley J. MCLEAN, Auteur ; Jordan GIFFORD, Auteur ; Hailey KISSNER, Auteur ; Rosalind SIPE, Auteur . - p.2844-2857. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-8 (August 2025) . - p.2844-2857 Index. décimale : PER Périodiques Résumé : Adverse childhood experiences (ACEs) have been associated with poor health outcomes in the general population. However, their impact on autistic youth remains unclear. En ligne : https://doi.org/10.1007/s10803-024-06401-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=565

Cardiovascular disease risk factors in autistic adults: The impact of sleep quality and antipsychotic medication use / Lauren BISHOP in Autism Research, 16-3 (March 2023)  

Public ISBD [article]  inAutism Research > 16-3 (March 2023) . - p.569-579 Titre : Cardiovascular disease risk factors in autistic adults: The impact of sleep quality and antipsychotic medication use Type de document : texte imprimé Auteurs : Lauren BISHOP, Auteur ; Rebecca A. CHARLTON, Auteur ; Kiley J. MCLEAN, Auteur ; Goldie A. MCQUAID, Auteur ; Nancy R. LEE, Auteur ; Gregory L. WALLACE, Auteur Article en page(s) : p.569-579 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Approximately 40% of American adults are affected by cardiovascular disease (CVD) risk factors (e.g., high blood pressure, high cholesterol, diabetes, and overweight or obesity), and risk among autistic adults may be even higher. Mechanisms underlying the high prevalence of CVD risk factors in autistic people may include known correlates of CVD risk factors in other groups, including high levels of perceived stress, poor sleep quality, and antipsychotic medication use. A sample of 545 autistic adults without intellectual disability aged 18+ were recruited through the Simons Foundation Powering Autism Research, Research Match. Multiple linear regression models examined the association between key independent variables (self-reported perceived stress, sleep quality, and antipsychotic medication use) and CVD risk factors, controlling for demographic variables (age, sex assigned at birth, race, low-income status, autistic traits). Overall, 73.2% of autistic adults in our sample had an overweight/obesity classification, 45.3% had high cholesterol, 39.4% had high blood pressure, and 10.3% had diabetes. Older age, male sex assigned at birth, and poorer sleep quality were associated with a higher number of CVD risk factors. Using antipsychotic medications was associated with an increased likelihood of having diabetes. Poorer sleep quality was associated with an increased likelihood of having an overweight/obesity classification. Self-reported CVD risk factors are highly prevalent among autistic adults. Both improving sleep quality and closely monitoring CVD risk factors among autistic adults who use antipsychotic medications have the potential to reduce risk for CVD. En ligne : https://doi.org/10.1002/aur.2872 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=498 [article] Cardiovascular disease risk factors in autistic adults: The impact of sleep quality and antipsychotic medication use [texte imprimé] / Lauren BISHOP, Auteur ; Rebecca A. CHARLTON, Auteur ; Kiley J. MCLEAN, Auteur ; Goldie A. MCQUAID, Auteur ; Nancy R. LEE, Auteur ; Gregory L. WALLACE, Auteur . - p.569-579. Langues : Anglais (eng) in Autism Research > 16-3 (March 2023) . - p.569-579 Index. décimale : PER Périodiques Résumé : Abstract Approximately 40% of American adults are affected by cardiovascular disease (CVD) risk factors (e.g., high blood pressure, high cholesterol, diabetes, and overweight or obesity), and risk among autistic adults may be even higher. Mechanisms underlying the high prevalence of CVD risk factors in autistic people may include known correlates of CVD risk factors in other groups, including high levels of perceived stress, poor sleep quality, and antipsychotic medication use. A sample of 545 autistic adults without intellectual disability aged 18+ were recruited through the Simons Foundation Powering Autism Research, Research Match. Multiple linear regression models examined the association between key independent variables (self-reported perceived stress, sleep quality, and antipsychotic medication use) and CVD risk factors, controlling for demographic variables (age, sex assigned at birth, race, low-income status, autistic traits). Overall, 73.2% of autistic adults in our sample had an overweight/obesity classification, 45.3% had high cholesterol, 39.4% had high blood pressure, and 10.3% had diabetes. Older age, male sex assigned at birth, and poorer sleep quality were associated with a higher number of CVD risk factors. Using antipsychotic medications was associated with an increased likelihood of having diabetes. Poorer sleep quality was associated with an increased likelihood of having an overweight/obesity classification. Self-reported CVD risk factors are highly prevalent among autistic adults. Both improving sleep quality and closely monitoring CVD risk factors among autistic adults who use antipsychotic medications have the potential to reduce risk for CVD. En ligne : https://doi.org/10.1002/aur.2872 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=498

Epilepsy in adulthood: Prevalence, incidence, and associated antiepileptic drug use in autistic adults in a state Medicaid system / Lauren BISHOP in Autism, 25-3 (April 2021)  

Public ISBD [article]  inAutism > 25-3 (April 2021) . - p.831-839 Titre : Epilepsy in adulthood: Prevalence, incidence, and associated antiepileptic drug use in autistic adults in a state Medicaid system Type de document : texte imprimé Auteurs : Lauren BISHOP, Auteur ; Kiley J. MCLEAN, Auteur ; Eric RUBENSTEIN, Auteur Article en page(s) : p.831-839 Langues : Anglais (eng) Mots-clés : Medicaid  autism spectrum disorders  epilepsy  gender  intellectual disability  medical comorbidity  sex differences  stroke Index. décimale : PER Périodiques Résumé : Epilepsy is more common in autistic children compared to children without autism, but we do not have good estimates of how many autistic adults have epilepsy. We used data from a full population of 7513 autistic adults who received Medicaid in Wisconsin to figure out the proportion of autistic adults who have epilepsy, as compared to 18,429 adults with intellectual disability. We also wanted to assess how often epilepsy is first diagnosed in adulthood. Finally, we wanted to see whether antiepileptic drugs are being used to treat epilepsy in autistic adults. We found that 34.6% of autistic adults with intellectual disability and 11.1% of autistic adults without intellectual disability had epilepsy, compared to 27.0% of adults with intellectual disability alone. Autistic women and autistic adults with intellectual disability were more likely than autistic men and autistic adults without intellectual disability to have both previous and new diagnoses of epilepsy. Finally, we found that antiepileptic medications are commonly prescribed to autistic people who do not have epilepsy potentially to treat mental health conditions or behavior problems, and that antiepileptic medications are not always prescribed to autistic people with epilepsy even though they are indicated as a first-line epilepsy treatment. The findings of this study highlight the need to effectively treat and prevent epilepsy in autistic adults. En ligne : http://dx.doi.org/10.1177/1362361320942982 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 [article] Epilepsy in adulthood: Prevalence, incidence, and associated antiepileptic drug use in autistic adults in a state Medicaid system [texte imprimé] / Lauren BISHOP, Auteur ; Kiley J. MCLEAN, Auteur ; Eric RUBENSTEIN, Auteur . - p.831-839. Langues : Anglais (eng) in Autism > 25-3 (April 2021) . - p.831-839 Mots-clés : Medicaid  autism spectrum disorders  epilepsy  gender  intellectual disability  medical comorbidity  sex differences  stroke Index. décimale : PER Périodiques Résumé : Epilepsy is more common in autistic children compared to children without autism, but we do not have good estimates of how many autistic adults have epilepsy. We used data from a full population of 7513 autistic adults who received Medicaid in Wisconsin to figure out the proportion of autistic adults who have epilepsy, as compared to 18,429 adults with intellectual disability. We also wanted to assess how often epilepsy is first diagnosed in adulthood. Finally, we wanted to see whether antiepileptic drugs are being used to treat epilepsy in autistic adults. We found that 34.6% of autistic adults with intellectual disability and 11.1% of autistic adults without intellectual disability had epilepsy, compared to 27.0% of adults with intellectual disability alone. Autistic women and autistic adults with intellectual disability were more likely than autistic men and autistic adults without intellectual disability to have both previous and new diagnoses of epilepsy. Finally, we found that antiepileptic medications are commonly prescribed to autistic people who do not have epilepsy potentially to treat mental health conditions or behavior problems, and that antiepileptic medications are not always prescribed to autistic people with epilepsy even though they are indicated as a first-line epilepsy treatment. The findings of this study highlight the need to effectively treat and prevent epilepsy in autistic adults. En ligne : http://dx.doi.org/10.1177/1362361320942982 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444

"I?m dealing with a health care system that doesn?t get it": Barriers and facilitators to inclusive healthcare for autistic adults / Kiley J. MCLEAN in Autism, 28-6 (June 2024)  

Public ISBD [article]  inAutism > 28-6 (June 2024) . - p.1382-1393 Titre : "I?m dealing with a health care system that doesn?t get it": Barriers and facilitators to inclusive healthcare for autistic adults Type de document : texte imprimé Auteurs : Kiley J. MCLEAN, Auteur ; Meghan HAAS, Auteur ; Jamie KOENIG, Auteur ; Megan HORVATH, Auteur ; Mariah VIGIL, Auteur ; Nicole E. WERNER, Auteur ; Lauren BISHOP, Auteur Article en page(s) : p.1382-1393 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  health services  qualitative research Index. décimale : PER Périodiques Résumé : Emerging research points to high rates of major psychiatric disorders and chronic medical conditions among autistic adults. However, the unique healthcare needs of autistic adults are often overlooked, perhaps due to limitations in population-level surveillance and widespread public misconceptions about autism in adulthood. Understanding the mechanisms underlying this prevalence of poor health outcomes in autistic adults requires an exploration into the lived experiences of autistic adults across their lifespans. This study uses a qualitative approach to investigate the healthcare experiences of autistic adults. We conducted semi-structured interviews with 23 autistic adults in the United States, ranging in age from 18 to 56 years, seven of whom identified as nonbinary or gender non-conforming. We asked autistic adults about how they manage their health and interact with healthcare systems. Through thematic analysis of the data, barriers to receipt of quality care for autistic adults were identified. Results were then conceptualized through the Systems Engineering Initiative for Patient Safety model of work system and patient safety. Through this model, this study describes the interactions between autistic adults and their healthcare systems, pointing to specific areas for improvement and intervention. Overall, findings advocate for a system-level approach to improving health outcomes of autistic adults. Lay abstract Research has suggested that autistic adults may have a bigger chance of having mental health and physical health conditions such as depression, anxiety, sleep disorders, diabetes, obesity, and heart problems than adults without autism. Unfortunately, the unique healthcare needs of autistic adults are often overlooked, so it is not clear why autistic adults have worse health or what can be done to improve it. This study wants to find out the challenges autistic adults experience in taking care of their health and in going to different doctors. Researchers interviewed autistic adults across the country about their healthcare experiences. The interviewed autistic adults told the researchers about the barriers (things that did not help) and facilitators (things that did help) that impacted whether they received the care they needed. The researchers then organized what they learned from the autistic adults into a model called the Systems Engineering Initiative for Patient Safety model of work system and patient safety. This model explains how different parts of a healthcare system (person, tasks, technology and tools, environment, and organization) interact with one another and impact the healthcare experiences and outcomes of the patients in their care, like autistic adults. Overall, this study advocates for a systems-level approach to improving the healthcare experiences of autistic adults and their health outcomes. En ligne : https://dx.doi.org/10.1177/13623613241236380 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 [article] "I?m dealing with a health care system that doesn?t get it": Barriers and facilitators to inclusive healthcare for autistic adults [texte imprimé] / Kiley J. MCLEAN, Auteur ; Meghan HAAS, Auteur ; Jamie KOENIG, Auteur ; Megan HORVATH, Auteur ; Mariah VIGIL, Auteur ; Nicole E. WERNER, Auteur ; Lauren BISHOP, Auteur . - p.1382-1393. Langues : Anglais (eng) in Autism > 28-6 (June 2024) . - p.1382-1393 Mots-clés : adults  autism spectrum disorders  health services  qualitative research Index. décimale : PER Périodiques Résumé : Emerging research points to high rates of major psychiatric disorders and chronic medical conditions among autistic adults. However, the unique healthcare needs of autistic adults are often overlooked, perhaps due to limitations in population-level surveillance and widespread public misconceptions about autism in adulthood. Understanding the mechanisms underlying this prevalence of poor health outcomes in autistic adults requires an exploration into the lived experiences of autistic adults across their lifespans. This study uses a qualitative approach to investigate the healthcare experiences of autistic adults. We conducted semi-structured interviews with 23 autistic adults in the United States, ranging in age from 18 to 56 years, seven of whom identified as nonbinary or gender non-conforming. We asked autistic adults about how they manage their health and interact with healthcare systems. Through thematic analysis of the data, barriers to receipt of quality care for autistic adults were identified. Results were then conceptualized through the Systems Engineering Initiative for Patient Safety model of work system and patient safety. Through this model, this study describes the interactions between autistic adults and their healthcare systems, pointing to specific areas for improvement and intervention. Overall, findings advocate for a system-level approach to improving health outcomes of autistic adults. Lay abstract Research has suggested that autistic adults may have a bigger chance of having mental health and physical health conditions such as depression, anxiety, sleep disorders, diabetes, obesity, and heart problems than adults without autism. Unfortunately, the unique healthcare needs of autistic adults are often overlooked, so it is not clear why autistic adults have worse health or what can be done to improve it. This study wants to find out the challenges autistic adults experience in taking care of their health and in going to different doctors. Researchers interviewed autistic adults across the country about their healthcare experiences. The interviewed autistic adults told the researchers about the barriers (things that did not help) and facilitators (things that did help) that impacted whether they received the care they needed. The researchers then organized what they learned from the autistic adults into a model called the Systems Engineering Initiative for Patient Safety model of work system and patient safety. This model explains how different parts of a healthcare system (person, tasks, technology and tools, environment, and organization) interact with one another and impact the healthcare experiences and outcomes of the patients in their care, like autistic adults. Overall, this study advocates for a systems-level approach to improving the healthcare experiences of autistic adults and their health outcomes. En ligne : https://dx.doi.org/10.1177/13623613241236380 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529

Methods to reduce fraudulent participation and highlight autistic voices in research / Meghan E. CAREY in Autism, 29-4 (April 2025)  

Public ISBD [article]  inAutism > 29-4 (April 2025) . - p.859-867 Titre : Methods to reduce fraudulent participation and highlight autistic voices in research Type de document : texte imprimé Auteurs : Meghan E. CAREY, Auteur ; Kiley J. MCLEAN, Auteur ; Kyle CHVASTA, Auteur ; Ashley B. DE MARCHENA, Auteur ; Anne M. ROUX, Auteur Article en page(s) : p.859-867 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  bot  fraud  methods  online research  qualitative research  research participation  scam Index. décimale : PER Périodiques Résumé : Alongside the rise in online qualitative research, fraudulent representation of research participants is increasing, and current strategies to address this issue within studies of non-neurodiverse samples may exclude autistic voices. Seeking to reduce fraudulent or "scammer" participation in our focus group study, and increase data validity and expenditure efficiency, we implemented strategies suggested in the literature and tested additional strategies. This research adds to the growing conversation around best practices for reducing scammers in autism research using online methods by (1) providing data evaluating the utility of existing strategies; (2) testing emerging strategies; and (3) discussing ethical dilemmas involved in addressing scammers in studies. We received over 200 expressions of interest and the established strategies suggested in the literature plus emerging strategies proved critical for mitigating the enrollment of scammers in focus groups. Protecting the integrity of data about human subjects from fraud is essential for rigorous autism research; trustworthy conclusions cannot be otherwise drawn from analysis. However, the strategies inherently require subjective decision-making that could systematically exclude participants with more limited or atypical communication and result in unfair subject selection. Procedures we recommend incur resources and are time consuming but are beneficial to ensure data integrity and inclusivity.Lay abstract Over the last decade, especially since the pandemic, more research has been happening online. Conducting research online can create opportunities to include autistic people across the world and make our studies more diverse. However, conducting research online had led to scammers, or people pretending to be autistic, participating in autism research studies. Strategies to stop scammers may accidentally leave out autistic people who have difficulty with processing time and open-ended questions. We tried out documented strategies to stop scammers from participating in autism research. We also tested new strategies to understand how helpful they are. Using these strategies, we suspected over 100 people who wanted to participate were scammers and did not invite them to participate. As researchers, we must ensure we stop scammers from participating in our studies. It?s important to highlight autistic voices and guarantee we get accurate results. However, the strategies to identify scammers may also leave out autistic people who have communication differences. This is unfair and could also make our results less reliable. The existing and new strategies to stop scammers take a lot of time and resources but they?re worth it to make sure our data are reliable, and include only autistic voices. En ligne : https://dx.doi.org/10.1177/13623613241298037 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=552 [article] Methods to reduce fraudulent participation and highlight autistic voices in research [texte imprimé] / Meghan E. CAREY, Auteur ; Kiley J. MCLEAN, Auteur ; Kyle CHVASTA, Auteur ; Ashley B. DE MARCHENA, Auteur ; Anne M. ROUX, Auteur . - p.859-867. Langues : Anglais (eng) in Autism > 29-4 (April 2025) . - p.859-867 Mots-clés : autism spectrum disorders  bot  fraud  methods  online research  qualitative research  research participation  scam Index. décimale : PER Périodiques Résumé : Alongside the rise in online qualitative research, fraudulent representation of research participants is increasing, and current strategies to address this issue within studies of non-neurodiverse samples may exclude autistic voices. Seeking to reduce fraudulent or "scammer" participation in our focus group study, and increase data validity and expenditure efficiency, we implemented strategies suggested in the literature and tested additional strategies. This research adds to the growing conversation around best practices for reducing scammers in autism research using online methods by (1) providing data evaluating the utility of existing strategies; (2) testing emerging strategies; and (3) discussing ethical dilemmas involved in addressing scammers in studies. We received over 200 expressions of interest and the established strategies suggested in the literature plus emerging strategies proved critical for mitigating the enrollment of scammers in focus groups. Protecting the integrity of data about human subjects from fraud is essential for rigorous autism research; trustworthy conclusions cannot be otherwise drawn from analysis. However, the strategies inherently require subjective decision-making that could systematically exclude participants with more limited or atypical communication and result in unfair subject selection. Procedures we recommend incur resources and are time consuming but are beneficial to ensure data integrity and inclusivity.Lay abstract Over the last decade, especially since the pandemic, more research has been happening online. Conducting research online can create opportunities to include autistic people across the world and make our studies more diverse. However, conducting research online had led to scammers, or people pretending to be autistic, participating in autism research studies. Strategies to stop scammers may accidentally leave out autistic people who have difficulty with processing time and open-ended questions. We tried out documented strategies to stop scammers from participating in autism research. We also tested new strategies to understand how helpful they are. Using these strategies, we suspected over 100 people who wanted to participate were scammers and did not invite them to participate. As researchers, we must ensure we stop scammers from participating in our studies. It?s important to highlight autistic voices and guarantee we get accurate results. However, the strategies to identify scammers may also leave out autistic people who have communication differences. This is unfair and could also make our results less reliable. The existing and new strategies to stop scammers take a lot of time and resources but they?re worth it to make sure our data are reliable, and include only autistic voices. En ligne : https://dx.doi.org/10.1177/13623613241298037 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=552

The impact of sleep quality on quality of life for autistic adults / Kiley J. MCLEAN in Research in Autism Spectrum Disorders, 88 (October 2021)  

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