"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 et/ou numérique 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 et/ou numérique] / 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 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 et/ou numérique Auteurs : Melissa RADEY, Auteur ; Lauren BISHOP, Auteur ; Nahime G AGUIRRE MTANOUS, Auteur ; Jamie KOENIG, Auteur ; Lindsay 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 et/ou numérique] / Melissa RADEY, Auteur ; Lauren BISHOP, Auteur ; Nahime G AGUIRRE MTANOUS, Auteur ; Jamie KOENIG, Auteur ; Lindsay 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

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