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 et/ou numérique 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? 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 et/ou numérique] / 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? 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

Co-design of an NHS primary care health check for autistic adults / Helen TAYLOR in Autism, 27-4 (May 2023)  

Public ISBD [article]  inAutism > 27-4 (May 2023) . - p.1079-1091 Titre : Co-design of an NHS primary care health check for autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Helen TAYLOR, Auteur ; Barry INGHAM, Auteur ; David MASON, Auteur ; Tracy FINCH, Auteur ; Colin WILSON, Auteur ; Clare SCARLETT, Auteur ; Sebastian MOSS, Auteur ; Carole BUCKLEY, Auteur ; Anna URBANOWICZ, Auteur ; Dora RAYMAKER, Auteur ; Charlotte SEIBOTH, Auteur ; Rhianna LEES, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBOURNE, Auteur ; Nicholas LENNOX, Auteur ; Sally-Ann COOPER, Auteur ; Christina NICOLAIDIS, Auteur ; Jeremy R PARR, Auteur Article en page(s) : p.1079-1091 Langues : Anglais (eng) Mots-clés : autism,autism spectrum disorders,health check,health services,qualitative research Index. décimale : PER Périodiques Résumé : Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people.Lay abstractAutistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people?s views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person?s physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals. En ligne : https://doi.org/10.1177/13623613221132921 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Co-design of an NHS primary care health check for autistic adults [Texte imprimé et/ou numérique] / Helen TAYLOR, Auteur ; Barry INGHAM, Auteur ; David MASON, Auteur ; Tracy FINCH, Auteur ; Colin WILSON, Auteur ; Clare SCARLETT, Auteur ; Sebastian MOSS, Auteur ; Carole BUCKLEY, Auteur ; Anna URBANOWICZ, Auteur ; Dora RAYMAKER, Auteur ; Charlotte SEIBOTH, Auteur ; Rhianna LEES, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBOURNE, Auteur ; Nicholas LENNOX, Auteur ; Sally-Ann COOPER, Auteur ; Christina NICOLAIDIS, Auteur ; Jeremy R PARR, Auteur . - p.1079-1091. Langues : Anglais (eng) in Autism > 27-4 (May 2023) . - p.1079-1091 Mots-clés : autism,autism spectrum disorders,health check,health services,qualitative research Index. décimale : PER Périodiques Résumé : Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people.Lay abstractAutistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people?s views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person?s physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals. En ligne : https://doi.org/10.1177/13623613221132921 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process" / Christina NICOLAIDIS in Autism, 29-8 (August 2025)  

Public ISBD [article]  inAutism > 29-8 (August 2025) . - p.1959-1972 Titre : Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process" Type de document : Texte imprimé et/ou numérique Auteurs : Christina NICOLAIDIS, Auteur ; Mirah SCHARER, Auteur ; Dora M RAYMAKER, Auteur ; Joseph VERA, Auteur ; Todd EDWARDS, Auteur ; Ian MOURA, Auteur ; Mary BAKER-ERICZEN, Auteur ; Joelle MASLAK, Auteur ; Liu-Qin YANG, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Steven K KAPP, Auteur ; Andrea JOYCE, Auteur ; Anna WALLINGTON, Auteur ; null NULL, Auteur Article en page(s) : p.1959-1972 Langues : Anglais (eng) Mots-clés : autistic adults  Delphi method  community-based participatory research  patient-reported outcome measures Index. décimale : PER Périodiques Résumé : People are increasingly recognizing the need for service interventions to improve the lives of autistic adults. However, less is known about how to best evaluate such services. We aimed to identify (1) which self-reported outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) what survey instruments would be needed to measure them. We nested a traditional researcher-driven "Delphi process" within our community-based participatory research approach in what we are calling a "CBPR-Nested Delphi Process." The process allowed us to reach a full consensus among 53 experts with professional and lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available instruments to measure these outcomes would need adaptations to be used with autistic adults (or proxies). Researchers and service providers should consider targeting interventions to these measurable outcomes and evaluating them using instruments that have been co-developed with autistic adults.Lay abstract Why was this project done?People are starting to recognize the need for services to improve the lives of autistic adults. But less is known about how to best evaluate such services.What were the goals of the project?To identify (1) which outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) how we can successfully measure them using surveys.What did the researchers do?We used a method called a "Delphi process" that gets input from lots of different experts. We used that method inside our own long-standing community-based participatory research (CBPR) process so that we could share power between the academic and community members of our team. We reached a full consensus (agreement) among 53 experts. These experts had professional and/or lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers.What does this study add?The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available surveys that try to measure these outcomes would need adaptations to be used with autistic adults (or if needed, with their caregivers).What are the implications?Researchers and service providers should consider targeting services to these outcomes. They should evaluate the effectiveness of services using surveys that have been created with and for autistic adults. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251322082 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564 [article] Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process" [Texte imprimé et/ou numérique] / Christina NICOLAIDIS, Auteur ; Mirah SCHARER, Auteur ; Dora M RAYMAKER, Auteur ; Joseph VERA, Auteur ; Todd EDWARDS, Auteur ; Ian MOURA, Auteur ; Mary BAKER-ERICZEN, Auteur ; Joelle MASLAK, Auteur ; Liu-Qin YANG, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Steven K KAPP, Auteur ; Andrea JOYCE, Auteur ; Anna WALLINGTON, Auteur ; null NULL, Auteur . - p.1959-1972. Langues : Anglais (eng) in Autism > 29-8 (August 2025) . - p.1959-1972 Mots-clés : autistic adults  Delphi method  community-based participatory research  patient-reported outcome measures Index. décimale : PER Périodiques Résumé : People are increasingly recognizing the need for service interventions to improve the lives of autistic adults. However, less is known about how to best evaluate such services. We aimed to identify (1) which self-reported outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) what survey instruments would be needed to measure them. We nested a traditional researcher-driven "Delphi process" within our community-based participatory research approach in what we are calling a "CBPR-Nested Delphi Process." The process allowed us to reach a full consensus among 53 experts with professional and lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available instruments to measure these outcomes would need adaptations to be used with autistic adults (or proxies). Researchers and service providers should consider targeting interventions to these measurable outcomes and evaluating them using instruments that have been co-developed with autistic adults.Lay abstract Why was this project done?People are starting to recognize the need for services to improve the lives of autistic adults. But less is known about how to best evaluate such services.What were the goals of the project?To identify (1) which outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) how we can successfully measure them using surveys.What did the researchers do?We used a method called a "Delphi process" that gets input from lots of different experts. We used that method inside our own long-standing community-based participatory research (CBPR) process so that we could share power between the academic and community members of our team. We reached a full consensus (agreement) among 53 experts. These experts had professional and/or lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers.What does this study add?The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available surveys that try to measure these outcomes would need adaptations to be used with autistic adults (or if needed, with their caregivers).What are the implications?Researchers and service providers should consider targeting services to these outcomes. They should evaluate the effectiveness of services using surveys that have been created with and for autistic adults. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251322082 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564

Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale / Christina NICOLAIDIS in Autism, 25-3 (April 2021)  

Public ISBD [article]  inAutism > 25-3 (April 2021) . - p.767-773 Titre : Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale Type de document : Texte imprimé et/ou numérique Auteurs : Christina NICOLAIDIS, Auteur ; Gavin SCHNIDER, Auteur ; Junghee LEE, Auteur ; Dora M. RAYMAKER, Auteur ; Steven K. KAPP, Auteur ; Lisa A. CROEN, Auteur ; Anna URBANOWICZ, Auteur ; Joelle MASLAK, Auteur Article en page(s) : p.767-773 Langues : Anglais (eng) Mots-clés : accommodations  adult  autism  community-based participatory research  healthcare providers Index. décimale : PER Périodiques Résumé : The adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers' confidence (or "self-efficacy") in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers' training needs most effectively. En ligne : http://dx.doi.org/10.1177/1362361320949734 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 [article] Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale [Texte imprimé et/ou numérique] / Christina NICOLAIDIS, Auteur ; Gavin SCHNIDER, Auteur ; Junghee LEE, Auteur ; Dora M. RAYMAKER, Auteur ; Steven K. KAPP, Auteur ; Lisa A. CROEN, Auteur ; Anna URBANOWICZ, Auteur ; Joelle MASLAK, Auteur . - p.767-773. Langues : Anglais (eng) in Autism > 25-3 (April 2021) . - p.767-773 Mots-clés : accommodations  adult  autism  community-based participatory research  healthcare providers Index. décimale : PER Périodiques Résumé : The adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers' confidence (or "self-efficacy") in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers' training needs most effectively. En ligne : http://dx.doi.org/10.1177/1362361320949734 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444

œ[I] don’t wanna just be like a cog in the machine �: Narratives of autism and skilled employment / Dora M. RAYMAKER in Autism, 27-1 (January 2023)  

Public ISBD [article]  inAutism > 27-1 (January 2023) . - p.65-75 Titre : œ[I] don’t wanna just be like a cog in the machine �: Narratives of autism and skilled employment Type de document : Texte imprimé et/ou numérique Auteurs : Dora M. RAYMAKER, Auteur ; Mirah SHARER, Auteur ; Joelle MASLAK, Auteur ; Laurie E. POWERS, Auteur ; Katherine E. MCDONALD, Auteur ; Steven K. KAPP, Auteur ; Ian MOURA, Auteur ; Anna WALLINGTON, Auteur ; Christina NICOLAIDIS, Auteur Article en page(s) : p.65-75 Langues : Anglais (eng) Mots-clés : adults  autism  community based participatory research  employment  employment services  qualitative research  vocational/labor force participation Index. décimale : PER Périodiques Résumé : Autistic people experience disparities in employment which may be exacerbated for individuals in skilled employment. Little is known about the experiences of autistic people in skilled employment or how they define success. We used a community-based participatory research approach to conduct a thematic analysis with an inductive approach at a semantic level through a critical realist paradigm. We interviewed 45 autistic people with skilled training, 11 supervisors, and 8 key informants. We purposively sampled to maximize variation. We addressed trustworthiness through multiple coders and peer debriefing. Common themes included high stakes of disclosure, unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma/burnout, autistic advantages in the workplace, and complex dimensions of discrimination. Participants defined success as opportunities for growth, work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Strategies to facilitate success suggested a multi-faceted and wholistic approach including attention to the role of supervisors. Our findings suggest a highly customizable, systems-focused, multifaceted approach to autism employment intervention could be useful in improving skilled employment outcomes. We recommend further work particularly in the areas of disclosure and destigmatizing disability in the workplace. Lay abstract Autistic people are less likely to be employed than the general population. Autistic people with skilled training (e.g. training for jobs in acting, plumbing, science, or social work) might be even less likely to get a good job in their field. Little is known about the experiences of autistic people in skilled employment or what employment success means to them. We interviewed 45 autistic people with skilled training in a wide range of fields, 11 job supervisors, and 8 topic experts. We asked them about their experiences, what they felt helped them to be successful at work, and what employment success means to them. Participants talked about the high stakes of disclosure, taking unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma and burnout, the autistic advantages in the workplace, and complex dimensions of discrimination. Participants said success meant opportunities for growth, good work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Things that helped them be successful included flexible, accepting workplaces, supportive and respectful supervisors, and direct communication. What we learned suggests that an individualized, wholistic approach to autism employment intervention that considers both employers and employees and employee mental health could be useful. We also recommend more research into disclosure and destigmatizing disability at work. En ligne : http://dx.doi.org/10.1177/13623613221080813 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491 [article]  œ[I] don’t wanna just be like a cog in the machine �: Narratives of autism and skilled employment [Texte imprimé et/ou numérique] / Dora M. RAYMAKER, Auteur ; Mirah SHARER, Auteur ; Joelle MASLAK, Auteur ; Laurie E. POWERS, Auteur ; Katherine E. MCDONALD, Auteur ; Steven K. KAPP, Auteur ; Ian MOURA, Auteur ; Anna WALLINGTON, Auteur ; Christina NICOLAIDIS, Auteur . - p.65-75. Langues : Anglais (eng) in Autism > 27-1 (January 2023) . - p.65-75 Mots-clés : adults  autism  community based participatory research  employment  employment services  qualitative research  vocational/labor force participation Index. décimale : PER Périodiques Résumé : Autistic people experience disparities in employment which may be exacerbated for individuals in skilled employment. Little is known about the experiences of autistic people in skilled employment or how they define success. We used a community-based participatory research approach to conduct a thematic analysis with an inductive approach at a semantic level through a critical realist paradigm. We interviewed 45 autistic people with skilled training, 11 supervisors, and 8 key informants. We purposively sampled to maximize variation. We addressed trustworthiness through multiple coders and peer debriefing. Common themes included high stakes of disclosure, unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma/burnout, autistic advantages in the workplace, and complex dimensions of discrimination. Participants defined success as opportunities for growth, work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Strategies to facilitate success suggested a multi-faceted and wholistic approach including attention to the role of supervisors. Our findings suggest a highly customizable, systems-focused, multifaceted approach to autism employment intervention could be useful in improving skilled employment outcomes. We recommend further work particularly in the areas of disclosure and destigmatizing disability in the workplace. Lay abstract Autistic people are less likely to be employed than the general population. Autistic people with skilled training (e.g. training for jobs in acting, plumbing, science, or social work) might be even less likely to get a good job in their field. Little is known about the experiences of autistic people in skilled employment or what employment success means to them. We interviewed 45 autistic people with skilled training in a wide range of fields, 11 job supervisors, and 8 topic experts. We asked them about their experiences, what they felt helped them to be successful at work, and what employment success means to them. Participants talked about the high stakes of disclosure, taking unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma and burnout, the autistic advantages in the workplace, and complex dimensions of discrimination. Participants said success meant opportunities for growth, good work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Things that helped them be successful included flexible, accepting workplaces, supportive and respectful supervisors, and direct communication. What we learned suggests that an individualized, wholistic approach to autism employment intervention that considers both employers and employees and employee mental health could be useful. We also recommend more research into disclosure and destigmatizing disability at work. En ligne : http://dx.doi.org/10.1177/13623613221080813 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=491

"I wouldn't know where to start": Perspectives from clinicians, agency leaders, and autistic adults on improving community mental health services for autistic adults / Brenna B MADDOX in Autism, 24-4 (May 2020)  

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Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research / Hillary K. SCHILTZ in Autism Research, 17-4 (April 2024)  

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Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults / Christina NICOLAIDIS in Autism, 25-3 (April 2021)  

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“Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum / Christina NICOLAIDIS in Autism, 19-7 (October 2015)  

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