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Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families / Ailbhe MCKINNEY in Autism, 26-6 (August 2022)
[article]
Titre : Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families Type de document : Texte imprimé et/ou numérique Auteurs : Ailbhe MCKINNEY, Auteur ; Emma Jl WEISBLATT, Auteur ; Kathryn L. HOTSON, Auteur ; Zahra BILAL AHMED, Auteur ; Claudia DIAS, Auteur ; Dorit BENSHALOM, Auteur ; Juliet FOSTER, Auteur ; Suzanne MURPHY, Auteur ; Sofia S. VILLAR, Auteur ; Matthew K. BELMONTE, Auteur Article en page(s) : p.1627-1639 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/therapy Autistic Disorder/therapy Child Communication Humans Intellectual Disability/therapy Parents autism clinical trial inclusion intellectual disability intervention minimally verbal nonverbal conflicts of interest with respect to the research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : Autistic children who speak few or no words or who have an intellectual disability are the most in need of new understandings and treatments, but the most often left out of the research that can bring these benefits. Researchers perceive difficulties around compliance with instructions, testing, challenging behaviours and family stress. Although research with these children can indeed be difficult, their continuing exclusion is unethical and unacceptable. Drawing on our experiences testing a possible treatment for children with profound autism, we provide 10 practical guidelines related to (1) interacting physically, (2) combining play and testing, (3) responding to challenging behaviour, (4) finding suitable tests, (5) relationships with parents, (6) relationships with siblings, (7) involving stakeholders, (8) planning the testing times, (9) the role of the clinical supervisor and (10) recruiting and retaining participants. We hope that these guidelines will prepare and embolden other research teams to work with profoundly autistic children, ending their historical exclusion from research. These guidelines also could be useful for conducting research with children with intellectual disabilities. En ligne : http://dx.doi.org/10.1177/1362361321998916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=484
in Autism > 26-6 (August 2022) . - p.1627-1639[article] Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families [Texte imprimé et/ou numérique] / Ailbhe MCKINNEY, Auteur ; Emma Jl WEISBLATT, Auteur ; Kathryn L. HOTSON, Auteur ; Zahra BILAL AHMED, Auteur ; Claudia DIAS, Auteur ; Dorit BENSHALOM, Auteur ; Juliet FOSTER, Auteur ; Suzanne MURPHY, Auteur ; Sofia S. VILLAR, Auteur ; Matthew K. BELMONTE, Auteur . - p.1627-1639.
Langues : Anglais (eng)
in Autism > 26-6 (August 2022) . - p.1627-1639
Mots-clés : Autism Spectrum Disorder/therapy Autistic Disorder/therapy Child Communication Humans Intellectual Disability/therapy Parents autism clinical trial inclusion intellectual disability intervention minimally verbal nonverbal conflicts of interest with respect to the research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : Autistic children who speak few or no words or who have an intellectual disability are the most in need of new understandings and treatments, but the most often left out of the research that can bring these benefits. Researchers perceive difficulties around compliance with instructions, testing, challenging behaviours and family stress. Although research with these children can indeed be difficult, their continuing exclusion is unethical and unacceptable. Drawing on our experiences testing a possible treatment for children with profound autism, we provide 10 practical guidelines related to (1) interacting physically, (2) combining play and testing, (3) responding to challenging behaviour, (4) finding suitable tests, (5) relationships with parents, (6) relationships with siblings, (7) involving stakeholders, (8) planning the testing times, (9) the role of the clinical supervisor and (10) recruiting and retaining participants. We hope that these guidelines will prepare and embolden other research teams to work with profoundly autistic children, ending their historical exclusion from research. These guidelines also could be useful for conducting research with children with intellectual disabilities. En ligne : http://dx.doi.org/10.1177/1362361321998916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=484 Understanding the role of self-determination in shaping university experiences for autistic and typically developing students in the United Kingdom / Jiedi LEI in Autism, 25-5 (July 2021)
[article]
Titre : Understanding the role of self-determination in shaping university experiences for autistic and typically developing students in the United Kingdom Type de document : Texte imprimé et/ou numérique Auteurs : Jiedi LEI, Auteur ; Ailsa RUSSELL, Auteur Article en page(s) : p.1262-1278 Langues : Anglais (eng) Mots-clés : Adult Autism Spectrum Disorder Autistic Disorder Friends Humans Students Universities autonomy college competence relatedness self-determination university conflicts of interest with respect to the research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : Prior research suggests that autistic students in higher education might struggle with developing autonomy, competence and establish relatedness due to their executive functioning and social communication difficulties. We interviewed 18 autistic and 18 typically developing students to explore how students perceived themselves to be in control of their university experience. Both groups provided anecdotal examples that supported similar perceptions of self-determination in shaping the academic, daily living and socialisation aspects of university life. Autistic students reflected on their cognitive strengths such as attention to detail, persistence and ability to tailor their academic studies towards their interest. Varying degrees of sociability were noted, with some autistic students preferring to focus their self-determination efforts on academic success, while others treasured the novel social experiences including peer support and friendship at university. Compared to greater flexibility endorsed by typically developing students, autistic students perceived establishing a routine at university to be a necessity and were self-determined in maintaining stability amid a sea of change. Recognising strengths and self-determination efforts in autistic students can help stakeholders support their personal development towards independent living and self-sufficiency in adulthood and to successfully transition into, through and out of university. En ligne : http://dx.doi.org/10.1177/1362361320984897 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475
in Autism > 25-5 (July 2021) . - p.1262-1278[article] Understanding the role of self-determination in shaping university experiences for autistic and typically developing students in the United Kingdom [Texte imprimé et/ou numérique] / Jiedi LEI, Auteur ; Ailsa RUSSELL, Auteur . - p.1262-1278.
Langues : Anglais (eng)
in Autism > 25-5 (July 2021) . - p.1262-1278
Mots-clés : Adult Autism Spectrum Disorder Autistic Disorder Friends Humans Students Universities autonomy college competence relatedness self-determination university conflicts of interest with respect to the research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : Prior research suggests that autistic students in higher education might struggle with developing autonomy, competence and establish relatedness due to their executive functioning and social communication difficulties. We interviewed 18 autistic and 18 typically developing students to explore how students perceived themselves to be in control of their university experience. Both groups provided anecdotal examples that supported similar perceptions of self-determination in shaping the academic, daily living and socialisation aspects of university life. Autistic students reflected on their cognitive strengths such as attention to detail, persistence and ability to tailor their academic studies towards their interest. Varying degrees of sociability were noted, with some autistic students preferring to focus their self-determination efforts on academic success, while others treasured the novel social experiences including peer support and friendship at university. Compared to greater flexibility endorsed by typically developing students, autistic students perceived establishing a routine at university to be a necessity and were self-determined in maintaining stability amid a sea of change. Recognising strengths and self-determination efforts in autistic students can help stakeholders support their personal development towards independent living and self-sufficiency in adulthood and to successfully transition into, through and out of university. En ligne : http://dx.doi.org/10.1177/1362361320984897 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475 Understanding the role of self-determination in shaping university experiences for autistic and typically developing students in the United Kingdom / Jiedi LEI in Autism, 26-5 (July 2022)
[article]
Titre : Understanding the role of self-determination in shaping university experiences for autistic and typically developing students in the United Kingdom Type de document : Texte imprimé et/ou numérique Auteurs : Jiedi LEI, Auteur ; Ailsa RUSSELL, Auteur Article en page(s) : p.1262-1278 Langues : Anglais (eng) Mots-clés : Adult Autism Spectrum Disorder Autistic Disorder Friends Humans Students Universities autism spectrum disorder autonomy college competence relatedness self-determination university conflicts of interest with respect to the research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : Prior research suggests that autistic students in higher education might struggle with developing autonomy, competence and establish relatedness due to their executive functioning and social communication difficulties. We interviewed 18 autistic and 18 typically developing students to explore how students perceived themselves to be in control of their university experience. Both groups provided anecdotal examples that supported similar perceptions of self-determination in shaping the academic, daily living and socialisation aspects of university life. Autistic students reflected on their cognitive strengths such as attention to detail, persistence and ability to tailor their academic studies towards their interest. Varying degrees of sociability were noted, with some autistic students preferring to focus their self-determination efforts on academic success, while others treasured the novel social experiences including peer support and friendship at university. Compared to greater flexibility endorsed by typically developing students, autistic students perceived establishing a routine at university to be a necessity and were self-determined in maintaining stability amid a sea of change. Recognising strengths and self-determination efforts in autistic students can help stakeholders support their personal development towards independent living and self-sufficiency in adulthood and to successfully transition into, through and out of university. En ligne : http://dx.doi.org/10.1177/1362361320984897 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=483
in Autism > 26-5 (July 2022) . - p.1262-1278[article] Understanding the role of self-determination in shaping university experiences for autistic and typically developing students in the United Kingdom [Texte imprimé et/ou numérique] / Jiedi LEI, Auteur ; Ailsa RUSSELL, Auteur . - p.1262-1278.
Langues : Anglais (eng)
in Autism > 26-5 (July 2022) . - p.1262-1278
Mots-clés : Adult Autism Spectrum Disorder Autistic Disorder Friends Humans Students Universities autism spectrum disorder autonomy college competence relatedness self-determination university conflicts of interest with respect to the research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : Prior research suggests that autistic students in higher education might struggle with developing autonomy, competence and establish relatedness due to their executive functioning and social communication difficulties. We interviewed 18 autistic and 18 typically developing students to explore how students perceived themselves to be in control of their university experience. Both groups provided anecdotal examples that supported similar perceptions of self-determination in shaping the academic, daily living and socialisation aspects of university life. Autistic students reflected on their cognitive strengths such as attention to detail, persistence and ability to tailor their academic studies towards their interest. Varying degrees of sociability were noted, with some autistic students preferring to focus their self-determination efforts on academic success, while others treasured the novel social experiences including peer support and friendship at university. Compared to greater flexibility endorsed by typically developing students, autistic students perceived establishing a routine at university to be a necessity and were self-determined in maintaining stability amid a sea of change. Recognising strengths and self-determination efforts in autistic students can help stakeholders support their personal development towards independent living and self-sufficiency in adulthood and to successfully transition into, through and out of university. En ligne : http://dx.doi.org/10.1177/1362361320984897 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=483 Exploring an e-learning community's response to the language and terminology use in autism from two massive open online courses on autism education and technology use / Jiedi LEI in Autism, 25-5 (July 2021)
[article]
Titre : Exploring an e-learning community's response to the language and terminology use in autism from two massive open online courses on autism education and technology use Type de document : Texte imprimé et/ou numérique Auteurs : Jiedi LEI, Auteur ; Lauren JONES, Auteur ; Mark BROSNAN, Auteur Article en page(s) : p.1349-1367 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder Autistic Disorder Computer-Assisted Instruction Education, Distance Humans Language Technology autism disability identity-first neurodiversity person-first quality of life terminology conflicts of interest with respect to the research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : Within the neurodiversity movement, one recent divergence is in the semantic choice of language when describing autism, as members of the autism and autistic community preferred to use identity-first language (autistic person), whereas professionals were more likely to use person-first language (person with autism). This study explored 803 e-learners' responses from their comments across two massive open online courses on autism education held between 2017 and 2019. Learners agreed that autistic individuals should guide others on which terminology to use when describing autism, and although identity-first language acknowledges autism as part of an individual's identity, it can also conjure up negative stereotypes and be stigmatising. Although family, friends and professionals highlighted that the diagnostic label is a way to facilitate understanding across stakeholder groups and help autistic individuals gain access to support, autistic self-advocates found the process of disclosing autism as a form of disability to conflict with their sense of identity, and broader terms such as 'autism spectrum' failed to capture individual strengths and weaknesses. Semantic language choices may matter less as long as the person's difficulties are clearly acknowledged, with adaptations made to meet their specific needs. Adding to a growing body of literature on terminology use in autism research and practice, we highlight that language used when describing autism should follow the autistic individual's lead, with the primary focus on communicating an individual's strengths and difficulties, to foster a sense of positive autism identity and inclusivity, and enable access to appropriate support. En ligne : http://dx.doi.org/10.1177/1362361320987963 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475
in Autism > 25-5 (July 2021) . - p.1349-1367[article] Exploring an e-learning community's response to the language and terminology use in autism from two massive open online courses on autism education and technology use [Texte imprimé et/ou numérique] / Jiedi LEI, Auteur ; Lauren JONES, Auteur ; Mark BROSNAN, Auteur . - p.1349-1367.
Langues : Anglais (eng)
in Autism > 25-5 (July 2021) . - p.1349-1367
Mots-clés : Autism Spectrum Disorder Autistic Disorder Computer-Assisted Instruction Education, Distance Humans Language Technology autism disability identity-first neurodiversity person-first quality of life terminology conflicts of interest with respect to the research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : Within the neurodiversity movement, one recent divergence is in the semantic choice of language when describing autism, as members of the autism and autistic community preferred to use identity-first language (autistic person), whereas professionals were more likely to use person-first language (person with autism). This study explored 803 e-learners' responses from their comments across two massive open online courses on autism education held between 2017 and 2019. Learners agreed that autistic individuals should guide others on which terminology to use when describing autism, and although identity-first language acknowledges autism as part of an individual's identity, it can also conjure up negative stereotypes and be stigmatising. Although family, friends and professionals highlighted that the diagnostic label is a way to facilitate understanding across stakeholder groups and help autistic individuals gain access to support, autistic self-advocates found the process of disclosing autism as a form of disability to conflict with their sense of identity, and broader terms such as 'autism spectrum' failed to capture individual strengths and weaknesses. Semantic language choices may matter less as long as the person's difficulties are clearly acknowledged, with adaptations made to meet their specific needs. Adding to a growing body of literature on terminology use in autism research and practice, we highlight that language used when describing autism should follow the autistic individual's lead, with the primary focus on communicating an individual's strengths and difficulties, to foster a sense of positive autism identity and inclusivity, and enable access to appropriate support. En ligne : http://dx.doi.org/10.1177/1362361320987963 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475 Exploring an e-learning community's response to the language and terminology use in autism from two massive open online courses on autism education and technology use / Jiedi LEI in Autism, 26-5 (July 2022)
[article]
Titre : Exploring an e-learning community's response to the language and terminology use in autism from two massive open online courses on autism education and technology use Type de document : Texte imprimé et/ou numérique Auteurs : Jiedi LEI, Auteur ; Lauren JONES, Auteur ; Mark BROSNAN, Auteur Article en page(s) : p.1349-1367 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder Autistic Disorder Computer-Assisted Instruction Education, Distance Humans Language Technology autism disability identity-first neurodiversity person-first quality of life terminology conflicts of interest with respect to the research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : Within the neurodiversity movement, one recent divergence is in the semantic choice of language when describing autism, as members of the autism and autistic community preferred to use identity-first language (autistic person), whereas professionals were more likely to use person-first language (person with autism). This study explored 803 e-learners' responses from their comments across two massive open online courses on autism education held between 2017 and 2019. Learners agreed that autistic individuals should guide others on which terminology to use when describing autism, and although identity-first language acknowledges autism as part of an individual's identity, it can also conjure up negative stereotypes and be stigmatising. Although family, friends and professionals highlighted that the diagnostic label is a way to facilitate understanding across stakeholder groups and help autistic individuals gain access to support, autistic self-advocates found the process of disclosing autism as a form of disability to conflict with their sense of identity, and broader terms such as 'autism spectrum' failed to capture individual strengths and weaknesses. Semantic language choices may matter less as long as the person's difficulties are clearly acknowledged, with adaptations made to meet their specific needs. Adding to a growing body of literature on terminology use in autism research and practice, we highlight that language used when describing autism should follow the autistic individual's lead, with the primary focus on communicating an individual's strengths and difficulties, to foster a sense of positive autism identity and inclusivity, and enable access to appropriate support. En ligne : http://dx.doi.org/10.1177/1362361320987963 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=483
in Autism > 26-5 (July 2022) . - p.1349-1367[article] Exploring an e-learning community's response to the language and terminology use in autism from two massive open online courses on autism education and technology use [Texte imprimé et/ou numérique] / Jiedi LEI, Auteur ; Lauren JONES, Auteur ; Mark BROSNAN, Auteur . - p.1349-1367.
Langues : Anglais (eng)
in Autism > 26-5 (July 2022) . - p.1349-1367
Mots-clés : Autism Spectrum Disorder Autistic Disorder Computer-Assisted Instruction Education, Distance Humans Language Technology autism disability identity-first neurodiversity person-first quality of life terminology conflicts of interest with respect to the research, authorship and/or publication of this article. Index. décimale : PER Périodiques Résumé : Within the neurodiversity movement, one recent divergence is in the semantic choice of language when describing autism, as members of the autism and autistic community preferred to use identity-first language (autistic person), whereas professionals were more likely to use person-first language (person with autism). This study explored 803 e-learners' responses from their comments across two massive open online courses on autism education held between 2017 and 2019. Learners agreed that autistic individuals should guide others on which terminology to use when describing autism, and although identity-first language acknowledges autism as part of an individual's identity, it can also conjure up negative stereotypes and be stigmatising. Although family, friends and professionals highlighted that the diagnostic label is a way to facilitate understanding across stakeholder groups and help autistic individuals gain access to support, autistic self-advocates found the process of disclosing autism as a form of disability to conflict with their sense of identity, and broader terms such as 'autism spectrum' failed to capture individual strengths and weaknesses. Semantic language choices may matter less as long as the person's difficulties are clearly acknowledged, with adaptations made to meet their specific needs. Adding to a growing body of literature on terminology use in autism research and practice, we highlight that language used when describing autism should follow the autistic individual's lead, with the primary focus on communicating an individual's strengths and difficulties, to foster a sense of positive autism identity and inclusivity, and enable access to appropriate support. En ligne : http://dx.doi.org/10.1177/1362361320987963 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=483 Anthropomorphic tendencies in autism: A conceptual replication and extension of White and Remington (2019) and preliminary development of a novel anthropomorphism measure / Rachel A. CLUTTERBUCK in Autism, 26-4 (May 2022)
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