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

"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

Material hardship and sources of support for autistic adolescents and their families / Melissa RADEY ; Lauren BISHOP ; Nahime G. AGUIRRE MTANOUS ; Jamie KOENIG ; Lindsay L. SHEA in Autism, 29-6 (June 2025)  

Public ISBD [article]  inAutism > 29-6 (June 2025) . - p.1415-1430 Titre : Material hardship and sources of support for autistic adolescents and their families Type de document : texte imprimé Auteurs : Melissa RADEY, Auteur ; Lauren BISHOP, Auteur ; Nahime G. AGUIRRE MTANOUS, Auteur ; Jamie KOENIG, Auteur ; Lindsay L. SHEA, Auteur Article en page(s) : p.1415-1430 Langues : Anglais (eng) Mots-clés : financial well-being  material hardship  quality of life  safety net Index. décimale : PER Périodiques Résumé : This exploratory study used the Future of Families and Child Wellbeing Study (FFCWS) to compare the financial well-being of families of adolescents with and without autism. Recognizing the gap in autism research, which predominantly measures financial well-being through household income, this study employed a multidimensional approach, including indicators of assets, material hardships, and both formal and informal safety net access. We found that families with autistic adolescents experienced greater financial instability, including a higher likelihood of substantial income drops and bankruptcy. Despite similar access to food assistance programs, food insecurity was notably higher among these families, especially in the lowest income brackets where nearly all families utilized food assistance. Furthermore, material hardship prevalence (46.4%) exceeded income poverty (29.8%), among families with autistic adolescents. A substantial proportion of middle- to high-income families also experienced hardships, had no assets, and lacked connection to safety net programs, suggesting that income-based metrics may not fully capture the financial challenges families face. The findings highlight the need for policies that acknowledge the broader financial needs of families with autistic adolescents, underscoring the inadequacies of current support systems.Lay abstract Our study looks at how families with autistic teenagers manage financially compared with families with teenagers who do not have autism. We know that money matters are a big part of life?s overall quality and that autistic individuals and their families often face more financial challenges. These challenges can affect their health, social connections, and access to needed services. What our research adds is a closer look at these financial difficulties by considering not just how much money a family has but also what they own, their struggles to meet basic needs, and the help they get from both government programs and their own social circles. We found that families with autistic teenagers often deal with more financial problems, including not having enough food, even though they might be using available support programs. This is important because it shows us that the current ways of helping may not be enough. Our findings suggest we need to think more broadly about how to support these families. This could mean making policies that better address their unique needs or coming up with new ways to help them that go beyond just looking at income. Understanding these challenges better can help us make life better for autistic individuals and their families. En ligne : https://dx.doi.org/10.1177/13623613241304503 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=558 [article] Material hardship and sources of support for autistic adolescents and their families [texte imprimé] / Melissa RADEY, Auteur ; Lauren BISHOP, Auteur ; Nahime G. AGUIRRE MTANOUS, Auteur ; Jamie KOENIG, Auteur ; Lindsay L. SHEA, Auteur . - p.1415-1430. Langues : Anglais (eng) in Autism > 29-6 (June 2025) . - p.1415-1430 Mots-clés : financial well-being  material hardship  quality of life  safety net Index. décimale : PER Périodiques Résumé : This exploratory study used the Future of Families and Child Wellbeing Study (FFCWS) to compare the financial well-being of families of adolescents with and without autism. Recognizing the gap in autism research, which predominantly measures financial well-being through household income, this study employed a multidimensional approach, including indicators of assets, material hardships, and both formal and informal safety net access. We found that families with autistic adolescents experienced greater financial instability, including a higher likelihood of substantial income drops and bankruptcy. Despite similar access to food assistance programs, food insecurity was notably higher among these families, especially in the lowest income brackets where nearly all families utilized food assistance. Furthermore, material hardship prevalence (46.4%) exceeded income poverty (29.8%), among families with autistic adolescents. A substantial proportion of middle- to high-income families also experienced hardships, had no assets, and lacked connection to safety net programs, suggesting that income-based metrics may not fully capture the financial challenges families face. The findings highlight the need for policies that acknowledge the broader financial needs of families with autistic adolescents, underscoring the inadequacies of current support systems.Lay abstract Our study looks at how families with autistic teenagers manage financially compared with families with teenagers who do not have autism. We know that money matters are a big part of life?s overall quality and that autistic individuals and their families often face more financial challenges. These challenges can affect their health, social connections, and access to needed services. What our research adds is a closer look at these financial difficulties by considering not just how much money a family has but also what they own, their struggles to meet basic needs, and the help they get from both government programs and their own social circles. We found that families with autistic teenagers often deal with more financial problems, including not having enough food, even though they might be using available support programs. This is important because it shows us that the current ways of helping may not be enough. Our findings suggest we need to think more broadly about how to support these families. This could mean making policies that better address their unique needs or coming up with new ways to help them that go beyond just looking at income. Understanding these challenges better can help us make life better for autistic individuals and their families. En ligne : https://dx.doi.org/10.1177/13623613241304503 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=558

Positive socialization mechanisms in secure and insecure parent–child dyads: two longitudinal studies / Grazyna KOCHANSKA in Journal of Child Psychology and Psychiatry, 51-9 (September 2010)  

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 51-9 (September 2010) . - p.998-1009 Titre : Positive socialization mechanisms in secure and insecure parent–child dyads: two longitudinal studies Type de document : texte imprimé Auteurs : Grazyna KOCHANSKA, Auteur ; Robin A. BARRY, Auteur ; Jarilyn WOODARD, Auteur ; Sanghag KIM, Auteur ; Jamie KOENIG, Auteur ; Jeung Eun YOON, Auteur Année de publication : 2010 Article en page(s) : p.998-1009 Langues : Anglais (eng) Mots-clés : Attachment disruptive-behavior longitudinal-studies parent–child-relationships moral-development Index. décimale : PER Périodiques Résumé : Background:  Implications of early attachment have been extensively studied, but little is known about its long-term indirect sequelae, where early security organization moderates future parent–child relationships, serving as a catalyst for adaptive and maladaptive processes. Two longitudinal multi-trait multi-method studies examined whether early security amplified beneficial effects of children’s willing, receptive stance toward the parent on socialization outcomes. Methods:  We examined parent–child early attachment organization, assessed in the Strange Situation at 14–15 months, as moderating links between children’s willing stance toward parents and socialization outcomes in Study 1 (108 mothers and children, followed to 73 months) and Study 2 (101 mothers, fathers, and children, followed to 80 months). Children’s willing stance was observed as committed compliance at 14 and 22 months in Study 1, and as responsiveness to the parent in naturalistic interactions and teaching contexts at 25 and 67 months in Study 2. Socialization outcomes included children’s internalization of maternal prohibition, observed at 33, 45, and 56 months, and maternal ratings of children’s externalizing problems at 73 months in Study 1, and mothers’ and fathers’ ratings of children’s oppositional defiant disorder and conduct disorder symptoms at 80 months in Study 2. Results:  Indirect effects of attachment were replicated across both studies and diverse measures: Attachment security significantly amplified the links between children’s willing stance to mothers and all outcomes. Secure children’s willing, cooperative stance to mothers predicted future successful socialization outcomes. Insecure children’s willing stance conferred no beneficial effects. Conclusions:  Implications of early attachment extend to long-term, indirect developmental sequelae. Security in the first year serves as a catalyst for future positive socialization processes. En ligne : http://dx.doi.org/10.1111/j.1469-7610.2010.02238.x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=108 [article] Positive socialization mechanisms in secure and insecure parent–child dyads: two longitudinal studies [texte imprimé] / Grazyna KOCHANSKA, Auteur ; Robin A. BARRY, Auteur ; Jarilyn WOODARD, Auteur ; Sanghag KIM, Auteur ; Jamie KOENIG, Auteur ; Jeung Eun YOON, Auteur . - 2010 . - p.998-1009. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 51-9 (September 2010) . - p.998-1009 Mots-clés : Attachment disruptive-behavior longitudinal-studies parent–child-relationships moral-development Index. décimale : PER Périodiques Résumé : Background:  Implications of early attachment have been extensively studied, but little is known about its long-term indirect sequelae, where early security organization moderates future parent–child relationships, serving as a catalyst for adaptive and maladaptive processes. Two longitudinal multi-trait multi-method studies examined whether early security amplified beneficial effects of children’s willing, receptive stance toward the parent on socialization outcomes. Methods:  We examined parent–child early attachment organization, assessed in the Strange Situation at 14–15 months, as moderating links between children’s willing stance toward parents and socialization outcomes in Study 1 (108 mothers and children, followed to 73 months) and Study 2 (101 mothers, fathers, and children, followed to 80 months). Children’s willing stance was observed as committed compliance at 14 and 22 months in Study 1, and as responsiveness to the parent in naturalistic interactions and teaching contexts at 25 and 67 months in Study 2. Socialization outcomes included children’s internalization of maternal prohibition, observed at 33, 45, and 56 months, and maternal ratings of children’s externalizing problems at 73 months in Study 1, and mothers’ and fathers’ ratings of children’s oppositional defiant disorder and conduct disorder symptoms at 80 months in Study 2. Results:  Indirect effects of attachment were replicated across both studies and diverse measures: Attachment security significantly amplified the links between children’s willing stance to mothers and all outcomes. Secure children’s willing, cooperative stance to mothers predicted future successful socialization outcomes. Insecure children’s willing stance conferred no beneficial effects. Conclusions:  Implications of early attachment extend to long-term, indirect developmental sequelae. Security in the first year serves as a catalyst for future positive socialization processes. En ligne : http://dx.doi.org/10.1111/j.1469-7610.2010.02238.x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=108

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