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Patterns in reporting and participant inclusion related to race and ethnicity in autism intervention literature: Data from a large-scale systematic review of evidence-based practices / Jessica R. STEINBRENNER in Autism, 26-8 (November 2022)
[article]
Titre : Patterns in reporting and participant inclusion related to race and ethnicity in autism intervention literature: Data from a large-scale systematic review of evidence-based practices Type de document : Texte imprimé et/ou numérique Auteurs : Jessica R. STEINBRENNER, Auteur ; Nancy MCINTYRE, Auteur ; Lindsay F. RENTSCHLER, Auteur ; Jamie N. PEARSON, Auteur ; Paul LUELMO, Auteur ; Maria Elizabeth JARAMILLO, Auteur ; Brian A. BOYD, Auteur ; Connie S. WONG, Auteur ; Sallie W. NOWELL, Auteur ; Samuel L ODOM, Auteur ; Kara A. HUME, Auteur Article en page(s) : p.2026-2040 Langues : Anglais (eng) Mots-clés : Child Humans Asian People Autism Spectrum Disorder Autistic Disorder Ethnicity Evidence-Based Practice Systematic Reviews as Topic autism interventions —psychosocial/behavioral race systematic review research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : Researchers who study autism-related interventions do a poor job reporting data related to the race and ethnicity of autistic individuals who participate in their studies, and of those who do report these data, the participants are overwhelmingly White. This is problematic for many reasons, as we know little about how interventions are meeting the needs of culturally and linguistically diverse populations, and we assume that interventions are effective for all when they have been developed and validated primarily with and for White children. This study examined the reporting patterns of autism intervention researchers whose work was included in a large-scale systematic review of the intervention literature published between 1990 and 2017. We found that only 25% of studies (out of 1,013 included in the review) included data related to the race and ethnicity of their participants, with minimal change in reporting patterns across the years. In studies with reported data, White participants had the highest rate of participation, with a large gap between the next highest rates of participation among Hispanic/Latino, Black, and Asian participants. Other race and ethnicity groups had very low representation. This study includes additional analyses which examine how the reporting patterns and the inclusion of racially and ethnically diverse participants varies across study types, interventions, and outcome areas. Reporting this data is merely a starting point to begin to address the many disparities in autism-related healthcare, education, and research practices, and this article includes broader implications and next steps to ensure the field becomes more equitable and inclusive. En ligne : http://dx.doi.org/10.1177/13623613211072593 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488
in Autism > 26-8 (November 2022) . - p.2026-2040[article] Patterns in reporting and participant inclusion related to race and ethnicity in autism intervention literature: Data from a large-scale systematic review of evidence-based practices [Texte imprimé et/ou numérique] / Jessica R. STEINBRENNER, Auteur ; Nancy MCINTYRE, Auteur ; Lindsay F. RENTSCHLER, Auteur ; Jamie N. PEARSON, Auteur ; Paul LUELMO, Auteur ; Maria Elizabeth JARAMILLO, Auteur ; Brian A. BOYD, Auteur ; Connie S. WONG, Auteur ; Sallie W. NOWELL, Auteur ; Samuel L ODOM, Auteur ; Kara A. HUME, Auteur . - p.2026-2040.
Langues : Anglais (eng)
in Autism > 26-8 (November 2022) . - p.2026-2040
Mots-clés : Child Humans Asian People Autism Spectrum Disorder Autistic Disorder Ethnicity Evidence-Based Practice Systematic Reviews as Topic autism interventions —psychosocial/behavioral race systematic review research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : Researchers who study autism-related interventions do a poor job reporting data related to the race and ethnicity of autistic individuals who participate in their studies, and of those who do report these data, the participants are overwhelmingly White. This is problematic for many reasons, as we know little about how interventions are meeting the needs of culturally and linguistically diverse populations, and we assume that interventions are effective for all when they have been developed and validated primarily with and for White children. This study examined the reporting patterns of autism intervention researchers whose work was included in a large-scale systematic review of the intervention literature published between 1990 and 2017. We found that only 25% of studies (out of 1,013 included in the review) included data related to the race and ethnicity of their participants, with minimal change in reporting patterns across the years. In studies with reported data, White participants had the highest rate of participation, with a large gap between the next highest rates of participation among Hispanic/Latino, Black, and Asian participants. Other race and ethnicity groups had very low representation. This study includes additional analyses which examine how the reporting patterns and the inclusion of racially and ethnically diverse participants varies across study types, interventions, and outcome areas. Reporting this data is merely a starting point to begin to address the many disparities in autism-related healthcare, education, and research practices, and this article includes broader implications and next steps to ensure the field becomes more equitable and inclusive. En ligne : http://dx.doi.org/10.1177/13623613211072593 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488 A survey of autistic adults, relatives and clinical teams in the United Kingdom: And Delphi process consensus statements on optimal autism diagnostic assessment for adults / Sarah WIGHAM in Autism, 26-8 (November 2022)
[article]
Titre : A survey of autistic adults, relatives and clinical teams in the United Kingdom: And Delphi process consensus statements on optimal autism diagnostic assessment for adults Type de document : Texte imprimé et/ou numérique Auteurs : Sarah WIGHAM, Auteur ; Barry INGHAM, Auteur ; Ann LE COUTEUR, Auteur ; Colin WILSON, Auteur ; Ian ENSUM, Auteur ; Jeremy R. PARR, Auteur Article en page(s) : p.1959-1972 Langues : Anglais (eng) Mots-clés : Adult Humans Autistic Disorder/diagnosis/psychology Autism Spectrum Disorder/diagnosis/psychology Surveys and Questionnaires United Kingdom NICE guidance adults assessment pathway autism spectrum disorders diagnosis stakeholders research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : Living with undiagnosed autism can be distressing and may affect mental health. A diagnosis of autism can help self-awareness and self-understanding. However, it can be difficult for adults to access an autism assessment. Clinicians also sometimes find it hard to identify autism in adults. This may mean an autism diagnosis is delayed or missed. In this study, we asked autistic adults, relatives and clinicians how to improve this. The study was in two stages. In the first stage (stage 1), 343 autistic adults and 45 relatives completed a survey. In the survey, we asked questions about people's experiences of UK autism assessment services for adults. Thirty-five clinicians completed a similar survey. Clinicians reported that some autism assessment teams lacked key professionals, for example, psychologists and occupational therapists. We used the information from the three separate surveys to create 13 statements describing best autism assessment services for adults. In stage 2, we asked clinicians for their views on the 13 statements. Clinicians agreed with 11 of the statements. Some autistic adults, relatives and clinicians were positive about autism assessment services, and many also described areas that could be improved. The study findings can be used to improve UK adult autism assessment services and may be helpful for service developments worldwide. En ligne : http://dx.doi.org/10.1177/13623613211073020 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488
in Autism > 26-8 (November 2022) . - p.1959-1972[article] A survey of autistic adults, relatives and clinical teams in the United Kingdom: And Delphi process consensus statements on optimal autism diagnostic assessment for adults [Texte imprimé et/ou numérique] / Sarah WIGHAM, Auteur ; Barry INGHAM, Auteur ; Ann LE COUTEUR, Auteur ; Colin WILSON, Auteur ; Ian ENSUM, Auteur ; Jeremy R. PARR, Auteur . - p.1959-1972.
Langues : Anglais (eng)
in Autism > 26-8 (November 2022) . - p.1959-1972
Mots-clés : Adult Humans Autistic Disorder/diagnosis/psychology Autism Spectrum Disorder/diagnosis/psychology Surveys and Questionnaires United Kingdom NICE guidance adults assessment pathway autism spectrum disorders diagnosis stakeholders research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : Living with undiagnosed autism can be distressing and may affect mental health. A diagnosis of autism can help self-awareness and self-understanding. However, it can be difficult for adults to access an autism assessment. Clinicians also sometimes find it hard to identify autism in adults. This may mean an autism diagnosis is delayed or missed. In this study, we asked autistic adults, relatives and clinicians how to improve this. The study was in two stages. In the first stage (stage 1), 343 autistic adults and 45 relatives completed a survey. In the survey, we asked questions about people's experiences of UK autism assessment services for adults. Thirty-five clinicians completed a similar survey. Clinicians reported that some autism assessment teams lacked key professionals, for example, psychologists and occupational therapists. We used the information from the three separate surveys to create 13 statements describing best autism assessment services for adults. In stage 2, we asked clinicians for their views on the 13 statements. Clinicians agreed with 11 of the statements. Some autistic adults, relatives and clinicians were positive about autism assessment services, and many also described areas that could be improved. The study findings can be used to improve UK adult autism assessment services and may be helpful for service developments worldwide. En ligne : http://dx.doi.org/10.1177/13623613211073020 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488 Caring for Children with an Autism Spectrum Disorder: Factors Associating with Health- and Care-Related Quality of Life of the Caregivers / Leontine W. TEN HOOPEN in Journal of Autism and Developmental Disorders, 52-11 (November 2022)
[article]
Titre : Caring for Children with an Autism Spectrum Disorder: Factors Associating with Health- and Care-Related Quality of Life of the Caregivers Type de document : Texte imprimé et/ou numérique Auteurs : Leontine W. TEN HOOPEN, Auteur ; Pieter F. A. DE NIJS, Auteur ; Jorieke DUVEKOT, Auteur ; Kirstin GREAVES-LORD, Auteur ; Manon H. J. HILLEGERS, Auteur ; Werner B. F. BROUWER, Auteur ; Leona HAKKAART-VAN ROIJEN, Auteur Article en page(s) : p.4665-4678 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder Caregivers Child Humans Parenting Quality of Life Surveys and Questionnaires Autism spectrum disorder (ASD) Caregiver CarerQol Children Eq-5d Health-related quality of life research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : This study investigated the association of child, caregiver, and caregiving measurements with the quality of life (QoL) in 81 caregivers (mostly parents) of clinically referred children with autism spectrum disorder (ASD). We used the EuroQol five-dimensional (EQ-5D) questionnaire and the care-related QoL questionnaire (CarerQol) to respectively assess health-related QoL and care-related QoL. Health-related QoL was associated with the caregiver's internalizing problems and adaptive coping, explaining 38% of the variance. Parenting stress and adaptive coping were associated with the care-related QoL and explained 60% of the variance. Child variables were not associated with the caregiver's health- and care-related QoL if caregiver and caregiving variables were taken into account. Findings indicate the importance of the caregiver's mental health, coping, and parenting stress in caring for children with ASD. En ligne : http://dx.doi.org/10.1007/s10803-021-05336-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=489
in Journal of Autism and Developmental Disorders > 52-11 (November 2022) . - p.4665-4678[article] Caring for Children with an Autism Spectrum Disorder: Factors Associating with Health- and Care-Related Quality of Life of the Caregivers [Texte imprimé et/ou numérique] / Leontine W. TEN HOOPEN, Auteur ; Pieter F. A. DE NIJS, Auteur ; Jorieke DUVEKOT, Auteur ; Kirstin GREAVES-LORD, Auteur ; Manon H. J. HILLEGERS, Auteur ; Werner B. F. BROUWER, Auteur ; Leona HAKKAART-VAN ROIJEN, Auteur . - p.4665-4678.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 52-11 (November 2022) . - p.4665-4678
Mots-clés : Autism Spectrum Disorder Caregivers Child Humans Parenting Quality of Life Surveys and Questionnaires Autism spectrum disorder (ASD) Caregiver CarerQol Children Eq-5d Health-related quality of life research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : This study investigated the association of child, caregiver, and caregiving measurements with the quality of life (QoL) in 81 caregivers (mostly parents) of clinically referred children with autism spectrum disorder (ASD). We used the EuroQol five-dimensional (EQ-5D) questionnaire and the care-related QoL questionnaire (CarerQol) to respectively assess health-related QoL and care-related QoL. Health-related QoL was associated with the caregiver's internalizing problems and adaptive coping, explaining 38% of the variance. Parenting stress and adaptive coping were associated with the care-related QoL and explained 60% of the variance. Child variables were not associated with the caregiver's health- and care-related QoL if caregiver and caregiving variables were taken into account. Findings indicate the importance of the caregiver's mental health, coping, and parenting stress in caring for children with ASD. En ligne : http://dx.doi.org/10.1007/s10803-021-05336-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=489 Adapting and validating the Autism Diagnostic Observation Schedule Version 2 for use with deaf children and young people / H. PHILLIPS in Journal of Autism and Developmental Disorders, 52-2 (February 2022)
[article]
Titre : Adapting and validating the Autism Diagnostic Observation Schedule Version 2 for use with deaf children and young people Type de document : Texte imprimé et/ou numérique Auteurs : H. PHILLIPS, Auteur ; B. WRIGHT, Auteur ; Victoria ALLGAR, Auteur ; H. MCCONACHIE, Auteur ; J. SWEETMAN, Auteur ; R. HARGATE, Auteur ; R. HODKINSON, Auteur ; M. BLAND, Auteur ; H. GEORGE, Auteur ; A. HUGHES, Auteur ; E. HAYWARD, Auteur ; V. F. G. DE LAS HERAS, Auteur ; A. LE COUTEUR, Auteur Article en page(s) : p.553-568 Langues : Anglais (eng) Mots-clés : Adolescent Autism Spectrum Disorder/diagnosis Autistic Disorder Child Humans Sensitivity and Specificity Specialization Assessment Autism Spectrum Disorder Autism diagnostic observation schedule Deaf Delphi consensus Diagnosis Sign language research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : We report a Delphi Consensus modification and first validation study of the Autism Diagnostic Observation Schedule - 2 with deaf children and young people (ADOS-2 Deaf adaptation). Validation included 122 deaf participants (aged 2-18 years), 63 with an Autism Spectrum Disorder (ASD). This was compared to a National Institute for Health and Clinical Excellence (NICE) guideline standard clinical assessment by blinded independent specialist clinicians. Results showed overall sensitivity 73% (95%CI 60%, 83%); specificity 71% (95%CI 58%, 82%), and for the more common modules 1-3 (combined as in previous studies) sensitivity 79% (95% CI 65-89%); specificity 79% (95% CI 66-89%) suggesting this instrument will be a helpful addition for use with deaf children and young people. En ligne : http://dx.doi.org/10.1007/s10803-021-04931-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=455
in Journal of Autism and Developmental Disorders > 52-2 (February 2022) . - p.553-568[article] Adapting and validating the Autism Diagnostic Observation Schedule Version 2 for use with deaf children and young people [Texte imprimé et/ou numérique] / H. PHILLIPS, Auteur ; B. WRIGHT, Auteur ; Victoria ALLGAR, Auteur ; H. MCCONACHIE, Auteur ; J. SWEETMAN, Auteur ; R. HARGATE, Auteur ; R. HODKINSON, Auteur ; M. BLAND, Auteur ; H. GEORGE, Auteur ; A. HUGHES, Auteur ; E. HAYWARD, Auteur ; V. F. G. DE LAS HERAS, Auteur ; A. LE COUTEUR, Auteur . - p.553-568.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 52-2 (February 2022) . - p.553-568
Mots-clés : Adolescent Autism Spectrum Disorder/diagnosis Autistic Disorder Child Humans Sensitivity and Specificity Specialization Assessment Autism Spectrum Disorder Autism diagnostic observation schedule Deaf Delphi consensus Diagnosis Sign language research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : We report a Delphi Consensus modification and first validation study of the Autism Diagnostic Observation Schedule - 2 with deaf children and young people (ADOS-2 Deaf adaptation). Validation included 122 deaf participants (aged 2-18 years), 63 with an Autism Spectrum Disorder (ASD). This was compared to a National Institute for Health and Clinical Excellence (NICE) guideline standard clinical assessment by blinded independent specialist clinicians. Results showed overall sensitivity 73% (95%CI 60%, 83%); specificity 71% (95%CI 58%, 82%), and for the more common modules 1-3 (combined as in previous studies) sensitivity 79% (95% CI 65-89%); specificity 79% (95% CI 66-89%) suggesting this instrument will be a helpful addition for use with deaf children and young people. En ligne : http://dx.doi.org/10.1007/s10803-021-04931-y Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=455 Supporting peer engagement for low-income preschool students with autism spectrum disorder during academic instruction: A pilot randomized trial / Jonathan L. PANGANIBAN in Autism, 26-8 (November 2022)
[article]
Titre : Supporting peer engagement for low-income preschool students with autism spectrum disorder during academic instruction: A pilot randomized trial Type de document : Texte imprimé et/ou numérique Auteurs : Jonathan L. PANGANIBAN, Auteur ; Stephanie Y. SHIRE, Auteur ; Justin H.G. WILLIAMS, Auteur ; Connie KASARI, Auteur Article en page(s) : p.2175-2187 Langues : Anglais (eng) Mots-clés : Child Child, Preschool Humans Autism Spectrum Disorder Pilot Projects School Teachers Autistic Disorder Students Jasper autism spectrum disorders engagement peer pre-school children professional development social communication research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : Children with autism spectrum disorder attending special education preschool classrooms may not receive support that addresses their core challenges, such as engagement and social communication. There are interventions designed to target these core challenges, like the play-based intervention known as Joint Attention, Symbolic Play, Engagement, and Regulation. Embedding strategies from an intervention like Joint Attention, Symbolic Play, Engagement, and Regulation into more traditional academic activities can help teachers target engagement and social communication throughout the school day. In the current study, we collaborated with special education preschool teachers to embed Joint Attention, Symbolic Play, Engagement, and Regulation strategies during small group time for moderate to severe disability students with autism spectrum disorder, 3-5 years of age. Compared to teachers implementing the standard preschool curriculum, teachers trained in Joint Attention, Symbolic Play, Engagement, and Regulation strategies effectively embedded these strategies in their small group activities, and their students were more likely to engage with peers during these activities. Supporting teachers to embed targeted strategies in academic activities can help them provide students more opportunities to engage with peers during the school day. Teachers can support their autistic students to interact appropriately with their peers. Unlike interventions that train peers to act as a teacher, embedding Joint Attention, Symbolic Play, Engagement, and Regulation strategies during small group academic activities facilitates naturalistic social interactions for autistic students. En ligne : http://dx.doi.org/10.1177/13623613221085339 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488
in Autism > 26-8 (November 2022) . - p.2175-2187[article] Supporting peer engagement for low-income preschool students with autism spectrum disorder during academic instruction: A pilot randomized trial [Texte imprimé et/ou numérique] / Jonathan L. PANGANIBAN, Auteur ; Stephanie Y. SHIRE, Auteur ; Justin H.G. WILLIAMS, Auteur ; Connie KASARI, Auteur . - p.2175-2187.
Langues : Anglais (eng)
in Autism > 26-8 (November 2022) . - p.2175-2187
Mots-clés : Child Child, Preschool Humans Autism Spectrum Disorder Pilot Projects School Teachers Autistic Disorder Students Jasper autism spectrum disorders engagement peer pre-school children professional development social communication research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : Children with autism spectrum disorder attending special education preschool classrooms may not receive support that addresses their core challenges, such as engagement and social communication. There are interventions designed to target these core challenges, like the play-based intervention known as Joint Attention, Symbolic Play, Engagement, and Regulation. Embedding strategies from an intervention like Joint Attention, Symbolic Play, Engagement, and Regulation into more traditional academic activities can help teachers target engagement and social communication throughout the school day. In the current study, we collaborated with special education preschool teachers to embed Joint Attention, Symbolic Play, Engagement, and Regulation strategies during small group time for moderate to severe disability students with autism spectrum disorder, 3-5 years of age. Compared to teachers implementing the standard preschool curriculum, teachers trained in Joint Attention, Symbolic Play, Engagement, and Regulation strategies effectively embedded these strategies in their small group activities, and their students were more likely to engage with peers during these activities. Supporting teachers to embed targeted strategies in academic activities can help them provide students more opportunities to engage with peers during the school day. Teachers can support their autistic students to interact appropriately with their peers. Unlike interventions that train peers to act as a teacher, embedding Joint Attention, Symbolic Play, Engagement, and Regulation strategies during small group academic activities facilitates naturalistic social interactions for autistic students. En ligne : http://dx.doi.org/10.1177/13623613221085339 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488