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Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families.

Published version
Peer-reviewed

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Type

Article

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Authors

Weisblatt, Emma Jl 
Hotson, Kathryn L 
Bilal Ahmed, Zahra 
Dias, Claudia 

Abstract

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.

Description

Keywords

autism, clinical trial, inclusion, intellectual disability, intervention, minimally verbal, nonverbal, Autism Spectrum Disorder, Autistic Disorder, Child, Communication, Humans, Intellectual Disability, Parents

Journal Title

Autism

Conference Name

Journal ISSN

1362-3613
1461-7005

Volume Title

25

Publisher

SAGE Publications
Sponsorship
National Institute for Health Research (PB-PG-0816-20019)