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

Challenging neurotypical norms: Autistic adults' understandings of health / Jamie KOENIG in Autism, 29-12 (December 2025)  

Public ISBD [article]  inAutism > 29-12 (December 2025) . - p.3136-3146 Titre : Challenging neurotypical norms: Autistic adults' understandings of health Type de document : texte imprimé Auteurs : Jamie KOENIG, Auteur ; Kiley J. MCLEAN, Auteur ; Meghan HAAS, Auteur ; Megan HORVATH, Auteur ; Mariah VIGIL, Auteur ; Nahime G. AGUIRRE MTANOUS, Auteur ; Sarah EFFERTZ, Auteur ; Lauren BISHOP, Auteur Article en page(s) : p.3136-3146 Langues : Anglais (eng) Mots-clés : adults  autism  health services  qualitative research Index. décimale : PER Périodiques Résumé : This study examined how autistic adults conceptualize health and whether their conceptualizations differed substantively from those of their emergency contacts (people who helped with health or healthcare management). We conducted semi-structured interviews with 10 dyads of autistic adults and emergency contacts. A thematic analysis with deductive and inductive codes identified four main themes: (1) health is subjective well-being; (2) healthy is the absence of pain; (3) challenging neurotypical norms; and (4) differences in health definitions were smaller than perceived. Autistic participants and emergency contacts endorsed the first two themes. Only autistic participants discussed the third theme. Despite broad agreement about what "healthy" means, emergency contacts perceived significant differences between their definition of health and that of their autistic counterpart. The data suggest these differences were primarily about health behaviors. We present a model for a Personalized Health Ecosystem, describing important factors for personal conceptualization of health among autistic adults. These findings demonstrate the need for individualized care, for healthcare providers to partner with autistic patients to best support their health, and for education programs for providers who work with this community.Lay Abstract Autistic adults experience worse health and have a higher risk of mortality on average. Many autistic adults say that physicians and other healthcare providers do not understand autism and autistic people’s needs. This study wants to understand how autistic adults specifically understand healthy habits as this could inform better care. We interviewed 10 autistic adults and their emergency contacts (family or friends who help them with healthcare decisions) about how they understand health and what they do to be healthy. We compared what the two groups said. Both autistic adults and their emergency contacts said that being healthy could look different for everyone. Beyond physical health, participants talked about mental, financial, and spiritual health. Participants described "healthy" as the absence of pain, though the fact that you can be in pain and healthy was mentioned. Autistic adults and their emergency contacts described health similarly. Autistic adults, however, shared more non-traditional health-promoting behaviors. These findings can help healthcare providers better understand how to work with autistic patients. Physicians should work with autistic patients on how to be healthy, rather than assume that autistic adults do not understand health. En ligne : https://dx.doi.org/10.1177/13623613251362336 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=572 [article] Challenging neurotypical norms: Autistic adults' understandings of health [texte imprimé] / Jamie KOENIG, Auteur ; Kiley J. MCLEAN, Auteur ; Meghan HAAS, Auteur ; Megan HORVATH, Auteur ; Mariah VIGIL, Auteur ; Nahime G. AGUIRRE MTANOUS, Auteur ; Sarah EFFERTZ, Auteur ; Lauren BISHOP, Auteur . - p.3136-3146. Langues : Anglais (eng) in Autism > 29-12 (December 2025) . - p.3136-3146 Mots-clés : adults  autism  health services  qualitative research Index. décimale : PER Périodiques Résumé : This study examined how autistic adults conceptualize health and whether their conceptualizations differed substantively from those of their emergency contacts (people who helped with health or healthcare management). We conducted semi-structured interviews with 10 dyads of autistic adults and emergency contacts. A thematic analysis with deductive and inductive codes identified four main themes: (1) health is subjective well-being; (2) healthy is the absence of pain; (3) challenging neurotypical norms; and (4) differences in health definitions were smaller than perceived. Autistic participants and emergency contacts endorsed the first two themes. Only autistic participants discussed the third theme. Despite broad agreement about what "healthy" means, emergency contacts perceived significant differences between their definition of health and that of their autistic counterpart. The data suggest these differences were primarily about health behaviors. We present a model for a Personalized Health Ecosystem, describing important factors for personal conceptualization of health among autistic adults. These findings demonstrate the need for individualized care, for healthcare providers to partner with autistic patients to best support their health, and for education programs for providers who work with this community.Lay Abstract Autistic adults experience worse health and have a higher risk of mortality on average. Many autistic adults say that physicians and other healthcare providers do not understand autism and autistic people’s needs. This study wants to understand how autistic adults specifically understand healthy habits as this could inform better care. We interviewed 10 autistic adults and their emergency contacts (family or friends who help them with healthcare decisions) about how they understand health and what they do to be healthy. We compared what the two groups said. Both autistic adults and their emergency contacts said that being healthy could look different for everyone. Beyond physical health, participants talked about mental, financial, and spiritual health. Participants described "healthy" as the absence of pain, though the fact that you can be in pain and healthy was mentioned. Autistic adults and their emergency contacts described health similarly. Autistic adults, however, shared more non-traditional health-promoting behaviors. These findings can help healthcare providers better understand how to work with autistic patients. Physicians should work with autistic patients on how to be healthy, rather than assume that autistic adults do not understand health. En ligne : https://dx.doi.org/10.1177/13623613251362336 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=572

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)  

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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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