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

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

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