Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities.
Rackeb Tesfaye, Valerie Courchesne, Afiqah Yusuf and 16 others
PMID 30915852WHAT IT FOUND
First-person studies mostly used in-person open-ended interviews, and minimally verbal participants were underrepresented.
Image-based tools such as Talking Mats and Photovoice, familiar settings and tailored questions were identified as possible ways to capture youth voices, but the review did not test whether these methods work.
Key findings
01The scoping review included 284 articles about methods for capturing first-person perspectives of youth with disabilities.
02Open-ended interviews were the most common primary method, while several studies excluded minimally verbal youth or youth with communication difficulties.
03Image-based supports such as Talking Mats and Photovoice were used to capture perspectives of youth with disabilities.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The review mapped methods but did not assess the quality of each study or test whether any method works better. Many studies did not report basic participant information, including disability type, age, gender, communication abilities or cognitive abilities. Most studies were small, with fewer than 20 school-aged children, and youth with minimal verbal abilities were often excluded or represented by parents. The stakeholder consultation included only four parents of boys with autism, so it did not capture girls, youth, adults with autism, educators or clinicians. Parents' views may differ from the children's own lived experience, and the paper says this consultation was only a first step.
Declared interests
The authors disclosed financial support from the Canadian Institutes of Health Research, KidsBrain Health Network, Fonds de recherche du Québec and the Joan & Jack Craig Chair in Autism Research. The paper names Kids Brain Health Network as funder.
The easy way to misread this
Do not read this as evidence that these methods improve clinical care. The review mapped methods used in research and did not test their effectiveness. The parent consultation included only four parents of boys with autism.