ArticleAutism : the international journal of research and practice2021
Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families.
Article in Autism : the international journal of research and practice, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it, 40 citations in OpenAlex.
- Digital tools for direct assessment of autism risk during early childhood: A systematic review.Autism : the international journal of research and practice · 2024Pooled it
- Developing a consensus research definition for profound autism using a modified Delphi method.Molecular autism · 2026Article
- Clinical Features of Children at Risk of Profound Autism.Journal of autism and developmental disorders · 2025Article
- A protocol for measuring sleep at home in children with autism using EEG headbands.Research square · 2025Article
- Heart rate defined sustained attention relates to visual attention in autism and fragile X syndrome.Scientific reports · 2025Article
- Vowel distinctiveness as a concurrent predictor of expressive language function in autistic children.Autism research : official journal of the International Society for Autism Research · 2024Article
- Re-Consenting Pediatric Research Participants as Legal Adulthood Approaches: Lessons from the SPARK Autism Study.Journal of autism and developmental disorders · 2024Article
- Barriers and facilitators to the recruitment of disabled people to clinical trials: a scoping review.Trials · 2023Article
- Profiling Language Skills in Minimally Verbal Autism: Findings From Greek-Speaking Preschoolers.Autism & developmental language impairmentsArticle
- Supporting Autistic Children's Participation in Research Studies: A Mixed-Methods Study of Familiarizing Autistic Children with A Humanoid Robot.Autism & developmental language impairmentsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 6 institutions in 2 countries.
Funding
Abstract
lay abstractAutistic 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.