Overcoming Hurdles to Intervention Studies with Autistic Children with Profound Communication Difficulties and Their Families

Autor/inn/en	McKinney, Ailbhe; Weisblatt, Emma J. L.; Hotson, Kathryn L.; Bilal Ahmed, Zahra; Dias, Claudia; BenShalom, Dorit; Foster, Juliet; Murphy, Suzanne; Villar, Sofía S.; Belmonte, Matthew K.
Titel	Overcoming Hurdles to Intervention Studies with Autistic Children with Profound Communication Difficulties and Their Families
Quelle	In: Autism: The International Journal of Research and Practice, 25 (2021) 6, S.1627-1639 (13 Seiten) PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (McKinney, Ailbhe) ORCID (BenShalom, Dorit) ORCID (Belmonte, Matthew K.)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1362-3613
DOI	10.1177/1362361321998916
Schlagwörter	Autism; Pervasive Developmental Disorders; Communication Disorders; Intervention; Barriers; Children; Data Collection; Research; Intellectual Disability; Verbal Ability; Foreign Countries; Adjustment (to Environment); Perceptual Impairments; Interaction; Play; Research Methodology; Measurement Techniques; Severe Disabilities; Behavior Problems; Interpersonal Relationship; Parents; Researchers; Siblings; Time; Stakeholders; Recruitment; Teamwork; United Kingdom (England); Vineland Adaptive Behavior Scales + Suchen Sie Ihr Suchwort? Autismus; Kommunikationsstörung; Child; Kind; Kinder; Data capture; Datensammlung; Forschung; Intellect; Disability; Disabilities; Verstand; Behinderung; Mündliche Leistung; Ausland; Perceptual handicaps; Wahrnehmungsstörung; Interaktion; Spiel; Research method; Forschungsmethode; Messtechnik; Severe disability; Schwerbehinderung; Interpersonal relation; Interpersonal relations; Interpersonelle Beziehung; Zwischenmenschliche Beziehung; Eltern; Researcher; Forscher; Sibling; Geschwister; Zeit; Recruiting; Rekrutierung
Abstract	Autistic children and adults who are non-verbal/minimally verbal or have an intellectual disability have often been excluded from Autism Spectrum Disorder research. Historical, practical and theoretical reasons for this exclusion continue to deter some researchers from work with this underserved population. We discuss why these reasons are neither convincing nor ethical, and provide strategies for dealing with practical issues. As part of a randomised controlled trial of an intervention for children with profound autism, we reflected as a multi-disciplinary team on what we had learnt from these children, their families and each other. We provide 10 strategies to overcome what appeared initially to be barriers to collecting data with this population. These hurdles and our solutions are organised by theme: interacting physically with children, how to play and test, navigating difficult behaviours, selecting suitable outcome measures, relating with parents, managing siblings, involving stakeholders, timing interactions, the clinician's role in managing expectations, and recruitment. The aim of this article is to provide researchers with the tools to feel motivated to conduct research with children with profound autism and their families, a difficult but worthwhile endeavour. Many of these lessons also apply to conducting research with non-autistic children with intellectual disabilities. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01