Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families / Ailbhe MCKINNEY in Autism, 26-6 (August 2022)  

Public ISBD [article]  inAutism > 26-6 (August 2022) . - p.1627-1639 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 [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

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