29 recherche sur le mot-clé 'autistic adults'

Autistic adults in China and the Netherlands: Proxy-reported community integration and life satisfaction / Sander BEGEER ; Rosa A. HOEKSTRA ; Chongying WANG ; Anke M. SCHEEREN in Autism, 28-12 (December 2024)  

Public ISBD [article]  inAutism > 28-12 (December 2024) . - p.3186-3200 Titre : Autistic adults in China and the Netherlands: Proxy-reported community integration and life satisfaction Type de document : texte imprimé Auteurs : Sander BEGEER, Auteur ; Rosa A. HOEKSTRA, Auteur ; Chongying WANG, Auteur ; Anke M. SCHEEREN, Auteur Article en page(s) : p.3186-3200 Langues : Anglais (eng) Mots-clés : autistic adults  community integration  community participation  cultural and contextual  life satisfaction  quality of life Index. décimale : PER Périodiques Résumé : Despite an estimated population of 10 million autistic individuals, there is still a significant lack of research on autistic adults in China. This study aimed to investigate the extent and factors influencing community integration (employment, independent living and friendship) and life satisfaction among young autistic adults in China, and compare them with an autistic adult sample with similar characteristics (58%-63% with a reported IQ below 70) from the Netherlands. Data were collected via online surveys to the caregivers of 99 young autistic adults (18-30 years) in China and 109 in the Netherlands, because the autistic adults were not able to fill in the survey independently. Autistic adults in both countries were reported to have limited community integration, as indicated by low rates of employment, limited independent living and few close friendships. Proxy-reported life satisfaction of autistic adults seemed relatively low in both countries, but even lower in Chinese adults, possibly due to limited awareness and acceptance of autism in China, inadequate or inaccessible support services, higher parenting stress, or general cross-country differences in well-being. In general, the findings indicate a common challenge faced by autistic adults with high support needs in both China and the Netherlands. Lay abstract Even though there are about 10 million Chinese autistic individuals, we know little about autistic adults in China. This study examined how well young autistic adults in China integrate into their communities (such as having a job, living independently and having friends) and how satisfied they are with their lives as reported by their caregivers. We compared them to autistic adults with similar characteristics (such as high support needs) from the Netherlands. We included 99 autistic adults in China and 109 in the Netherlands (18-30 years). In both countries, autistic adults were reported to have a hard time fitting into their communities. They often had no work, did not live on their own and had few close friends. Also, in both countries, caregivers reported that autistic adults felt low satisfaction with their life. Chinese adults were less satisfied with their life than Dutch adults, as indicated by their caregivers. This could be because of a lack of support for autistic adults in China, higher parental stress in Chinese caregivers, or general cross-country differences in happiness. Only in the Dutch group, younger compared with older adults fitted better into their communities, and adults without additional psychiatric conditions were reported to have higher life satisfaction. Country was a significant predictor of independent living only, with Dutch participants more likely living in care facilities than Chinese participants. In conclusion, our study shows that autistic adults with high support needs generally face similar challenges in both China and the Netherlands. En ligne : https://dx.doi.org/10.1177/13623613241258182 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=543 [article] Autistic adults in China and the Netherlands: Proxy-reported community integration and life satisfaction [texte imprimé] / Sander BEGEER, Auteur ; Rosa A. HOEKSTRA, Auteur ; Chongying WANG, Auteur ; Anke M. SCHEEREN, Auteur . - p.3186-3200. Langues : Anglais (eng) in Autism > 28-12 (December 2024) . - p.3186-3200 Mots-clés : autistic adults  community integration  community participation  cultural and contextual  life satisfaction  quality of life Index. décimale : PER Périodiques Résumé : Despite an estimated population of 10 million autistic individuals, there is still a significant lack of research on autistic adults in China. This study aimed to investigate the extent and factors influencing community integration (employment, independent living and friendship) and life satisfaction among young autistic adults in China, and compare them with an autistic adult sample with similar characteristics (58%-63% with a reported IQ below 70) from the Netherlands. Data were collected via online surveys to the caregivers of 99 young autistic adults (18-30 years) in China and 109 in the Netherlands, because the autistic adults were not able to fill in the survey independently. Autistic adults in both countries were reported to have limited community integration, as indicated by low rates of employment, limited independent living and few close friendships. Proxy-reported life satisfaction of autistic adults seemed relatively low in both countries, but even lower in Chinese adults, possibly due to limited awareness and acceptance of autism in China, inadequate or inaccessible support services, higher parenting stress, or general cross-country differences in well-being. In general, the findings indicate a common challenge faced by autistic adults with high support needs in both China and the Netherlands. Lay abstract Even though there are about 10 million Chinese autistic individuals, we know little about autistic adults in China. This study examined how well young autistic adults in China integrate into their communities (such as having a job, living independently and having friends) and how satisfied they are with their lives as reported by their caregivers. We compared them to autistic adults with similar characteristics (such as high support needs) from the Netherlands. We included 99 autistic adults in China and 109 in the Netherlands (18-30 years). In both countries, autistic adults were reported to have a hard time fitting into their communities. They often had no work, did not live on their own and had few close friends. Also, in both countries, caregivers reported that autistic adults felt low satisfaction with their life. Chinese adults were less satisfied with their life than Dutch adults, as indicated by their caregivers. This could be because of a lack of support for autistic adults in China, higher parental stress in Chinese caregivers, or general cross-country differences in happiness. Only in the Dutch group, younger compared with older adults fitted better into their communities, and adults without additional psychiatric conditions were reported to have higher life satisfaction. Country was a significant predictor of independent living only, with Dutch participants more likely living in care facilities than Chinese participants. In conclusion, our study shows that autistic adults with high support needs generally face similar challenges in both China and the Netherlands. En ligne : https://dx.doi.org/10.1177/13623613241258182 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=543

Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study / Lucy BEASANT in Autism, 28-6 (June 2024)  

Public ISBD [article]  inAutism > 28-6 (June 2024) . - p.1540-1550 Titre : Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study Type de document : texte imprimé Auteurs : Lucy BEASANT, Auteur ; Alba REALPE, Auteur ; Sarah N. DOUGLAS, Auteur ; Lorcan KENNY, Auteur ; Dheeraj RAI, Auteur ; Nicola MILLS, Auteur Article en page(s) : p.1540-1550 Langues : Anglais (eng) Mots-clés : autistic adults  co-production  learning disabilities  qualitative research  trial methodology Index. décimale : PER Périodiques Résumé : The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples' heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community. Lay abstract Large randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population. En ligne : https://dx.doi.org/10.1177/13623613231202432 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 [article] Autistic adults' views on the design and processes within randomised controlled trials: The APRiCoT study [texte imprimé] / Lucy BEASANT, Auteur ; Alba REALPE, Auteur ; Sarah N. DOUGLAS, Auteur ; Lorcan KENNY, Auteur ; Dheeraj RAI, Auteur ; Nicola MILLS, Auteur . - p.1540-1550. Langues : Anglais (eng) in Autism > 28-6 (June 2024) . - p.1540-1550 Mots-clés : autistic adults  co-production  learning disabilities  qualitative research  trial methodology Index. décimale : PER Périodiques Résumé : The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples' heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community. Lay abstract Large randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population. En ligne : https://dx.doi.org/10.1177/13623613231202432 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529

An Assessment of the Psychometric Properties of the GHQ-12 in an English Population of Autistic Adults Without Learning Difficulties / Emese MAYHEW in Journal of Autism and Developmental Disorders, 51-4 (April 2021)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 51-4 (April 2021) . - p.1093-1106 Titre : An Assessment of the Psychometric Properties of the GHQ-12 in an English Population of Autistic Adults Without Learning Difficulties Type de document : texte imprimé Auteurs : Emese MAYHEW, Auteur ; Lucy STUTTARD, Auteur ; Bryony BERESFORD, Auteur Article en page(s) : p.1093-1106 Langues : Anglais (eng) Mots-clés : Autistic adults  Confirmatory factor analysis  General health questionnaire  Psychometric properties  Rasch analysis Index. décimale : PER Périodiques Résumé : Valid and reliable tools to measure mental health are a key requirement to developing a robust evidence base on mental health difficulties and autism. There are several reasons why mental health measures developed for the neurotypical population may not be valid and reliable when used with autistic adults. Using data collected from a national evaluation of community-based, specialist autism provision in England, this study assessed the psychometric properties of the General Health Questionnaire (GHQ-12) in a population of autistic adults without learning difficulties. We examined the measure's acceptability, reliability and internal construct validity. The GHQ-12 was found to have good psychometric properties in this population. This provides first evidence that this measure can be used with autistic adults without LD. En ligne : http://dx.doi.org/10.1007/s10803-020-04604-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=445 [article] An Assessment of the Psychometric Properties of the GHQ-12 in an English Population of Autistic Adults Without Learning Difficulties [texte imprimé] / Emese MAYHEW, Auteur ; Lucy STUTTARD, Auteur ; Bryony BERESFORD, Auteur . - p.1093-1106. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 51-4 (April 2021) . - p.1093-1106 Mots-clés : Autistic adults  Confirmatory factor analysis  General health questionnaire  Psychometric properties  Rasch analysis Index. décimale : PER Périodiques Résumé : Valid and reliable tools to measure mental health are a key requirement to developing a robust evidence base on mental health difficulties and autism. There are several reasons why mental health measures developed for the neurotypical population may not be valid and reliable when used with autistic adults. Using data collected from a national evaluation of community-based, specialist autism provision in England, this study assessed the psychometric properties of the General Health Questionnaire (GHQ-12) in a population of autistic adults without learning difficulties. We examined the measure's acceptability, reliability and internal construct validity. The GHQ-12 was found to have good psychometric properties in this population. This provides first evidence that this measure can be used with autistic adults without LD. En ligne : http://dx.doi.org/10.1007/s10803-020-04604-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=445

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 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] / 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

Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults / Caroline HEARST ; Maria ASHWORTH ; Jade DAVIES in Autism & Developmental Language Impairments, 8 (January-December 2023)  

Public ISBD [article]  inAutism & Developmental Language Impairments > 8 (January-December 2023) Titre : Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults Type de document : texte imprimé Auteurs : Caroline HEARST, Auteur ; Maria ASHWORTH, Auteur ; Jade DAVIES, Auteur Langues : Anglais (eng) Mots-clés : Post-diagnostic support  peer group  psychoeducation  telehealth  autistic adults Index. décimale : PER Périodiques Résumé : Background & aimsExploring Being Autistic is an autistic-led group-based programme providing psychoeducation and peer support to newly identified/diagnosed autistic adults. In 2020, due to social distancing measures implemented following the coronavirus pandemic, Exploring Being Autistic was adapted for online delivery. Here, we aimed to replicate previous research into the in-person delivery of Exploring Being Autistic, to determine whether similar results were obtained when the programme was delivered online. Further, we aimed to identify the unique opportunities and challenges that online delivery afforded.MethodsWe used a community-based participatory research (CBPR) approach, whereby the autistic developer and facilitator of Exploring Being Autistic worked collaboratively with a team of academic researchers throughout the research process. Together, we evaluated two iterations of the online Exploring Being Autistic programme, involving 16 attendees. Attendees completed questionnaires before, during and after the programme. Attendees were also invited to participate in two post-programme (group or individual) interviews: one following the completion of the programme (time one) and another 6-8 months later (time two). Attendees were included in the research if they completed at least one questionnaire or interview. Data were analysed qualitatively, using reflexive thematic analysis.ResultsExperiences of participating in the programme tended to be positive. Participants appreciated the autistic-led nature of the programme, found unity in the diversity of the group, and developed a positive and practical outlook as a result of the programme. Further analyses of our data revealed mixed views regarding the online delivery of the programme. Opportunities of online delivery were noted, such as this mode of participation reducing cognitive load, enabling the programme to be accessible to more participants, and fostering meaningful social connections among participants. However, technology and practical issues were felt to cause barriers, and some human aspects of participation were felt to be 'lost in translation' (e.g., in breakout groups).ConclusionsThe online delivery of the Exploring Being Autistic programme yielded similar results to previous, in-person evaluations of the programme. While we identified positive aspects of online delivery, this mode did not entirely suit everyone's needs.ImplicationsFrom the current findings, we can make several recommendations to develop online support for autistic people. First, flexibility is key. To make support accessible and inclusive to a broad range of autistic people, the option for attendees to engage in-person, online or in hybrid formats should be considered. Second, if delivering support online, the use of breakout rooms should be carefully considered. While participants appreciated the opportunity to meet different people, some participants found the unpredictability and lack of scaffolding associated with breakout rooms challenging. To mitigate these challenges, groups could be pre-determined and shared with the attendees in advance (although consideration should be given to how the groups 'fit' together, and whether groupings should be changed at set intervals). Gentle warnings should also be given to those in breakout rooms, to alert them of the need to re-join the main group. Finally, support with technological aspects relating to engagement should be prioritised. En ligne : https://dx.doi.org/10.1177/23969415231189608 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518 [article] Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults [texte imprimé] / Caroline HEARST, Auteur ; Maria ASHWORTH, Auteur ; Jade DAVIES, Auteur. Langues : Anglais (eng) in Autism & Developmental Language Impairments > 8 (January-December 2023) Mots-clés : Post-diagnostic support  peer group  psychoeducation  telehealth  autistic adults Index. décimale : PER Périodiques Résumé : Background & aimsExploring Being Autistic is an autistic-led group-based programme providing psychoeducation and peer support to newly identified/diagnosed autistic adults. In 2020, due to social distancing measures implemented following the coronavirus pandemic, Exploring Being Autistic was adapted for online delivery. Here, we aimed to replicate previous research into the in-person delivery of Exploring Being Autistic, to determine whether similar results were obtained when the programme was delivered online. Further, we aimed to identify the unique opportunities and challenges that online delivery afforded.MethodsWe used a community-based participatory research (CBPR) approach, whereby the autistic developer and facilitator of Exploring Being Autistic worked collaboratively with a team of academic researchers throughout the research process. Together, we evaluated two iterations of the online Exploring Being Autistic programme, involving 16 attendees. Attendees completed questionnaires before, during and after the programme. Attendees were also invited to participate in two post-programme (group or individual) interviews: one following the completion of the programme (time one) and another 6-8 months later (time two). Attendees were included in the research if they completed at least one questionnaire or interview. Data were analysed qualitatively, using reflexive thematic analysis.ResultsExperiences of participating in the programme tended to be positive. Participants appreciated the autistic-led nature of the programme, found unity in the diversity of the group, and developed a positive and practical outlook as a result of the programme. Further analyses of our data revealed mixed views regarding the online delivery of the programme. Opportunities of online delivery were noted, such as this mode of participation reducing cognitive load, enabling the programme to be accessible to more participants, and fostering meaningful social connections among participants. However, technology and practical issues were felt to cause barriers, and some human aspects of participation were felt to be 'lost in translation' (e.g., in breakout groups).ConclusionsThe online delivery of the Exploring Being Autistic programme yielded similar results to previous, in-person evaluations of the programme. While we identified positive aspects of online delivery, this mode did not entirely suit everyone's needs.ImplicationsFrom the current findings, we can make several recommendations to develop online support for autistic people. First, flexibility is key. To make support accessible and inclusive to a broad range of autistic people, the option for attendees to engage in-person, online or in hybrid formats should be considered. Second, if delivering support online, the use of breakout rooms should be carefully considered. While participants appreciated the opportunity to meet different people, some participants found the unpredictability and lack of scaffolding associated with breakout rooms challenging. To mitigate these challenges, groups could be pre-determined and shared with the attendees in advance (although consideration should be given to how the groups 'fit' together, and whether groupings should be changed at set intervals). Gentle warnings should also be given to those in breakout rooms, to alert them of the need to re-join the main group. Finally, support with technological aspects relating to engagement should be prioritised. En ligne : https://dx.doi.org/10.1177/23969415231189608 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518

Exploring the relationship between COVID-19 and autistic adults' community participation: Findings from a two-timepoint longitudinal study / Mark S. SALZER ; Alec BECKER ; David J. VANNESS ; Brian K. LEE ; Dylan S. COOPER ; Jonas VENTIMIGLIA ; Lindsay L. SHEA in Research in Autism Spectrum Disorders, 109 (November 2023)  

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Family Sexuality Communication: Parent Report for Autistic Young Adults Versus a Comparison Group / Laura GRAHAM HOLMES in Journal of Autism and Developmental Disorders, 50-8 (August 2020)  

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Gender Differences in the First Impressions of Autistic Adults / Eilidh CAGE in Autism Research, 12-10 (October 2019)  

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Instructions to attend to an observed action increase imitation in autistic adults / Emma GOWEN in Autism, 24-3 (April 2020)  

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'Maybe we just seem like easy targets': A qualitative analysis of autistic adults' experiences of interpersonal violence / Vicki GIBBS in Autism, 27-7 (October 2023)  

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