Examining Language and Communication in Autistic People with Complex Support Needs – A Scoping Review of Procedural and Measurement Issues and Practice

AbstractBackground: Autistic people with complex support needs have historically been under-represented in research. Developing an understanding of, and suitable interventions for the language and communication needs of this group has been identified as a priority area for research by the autistic community (Autistica, 2016) but progress to date has been slow. This scoping review seeks to provide an overview of current research practices to identify potential barriers hindering progress and to inform recommendations for future research based on current best practices.Methods: We searched eleven electronic databases for published and unpublished literature that focused on aspects of language and communication and that reported separately on autistic people with complex support needs, as defined by a broad set of search terms. Searches and extraction were performed by one researcher, with a second researcher verifying 20% of the sample. Quantitative (e.g., frequencies of use of measurement tools) and qualitative (i.e., content analysis of adaptations made) syntheses were conducted.Results: Searches returned 4064 unique articles, of which 888 were deemed eligible for screening on full text, resulting in the final inclusion of 190 published papers. Findings indicate a lack of consistency in the use of terminology and considerable variation in how terminology is defined and operationalised. Over half of all studies did not report on consent procedures, with only five individual papers reporting on strategies used for assessing ongoing assent. Approximately half of all assessment tools identified were only used once. Tools relying on proxy reporting or observation were most common. Study-specific approaches were the most common approach taken to measuring aspects of language and communication change. Researchers frequently sought to adapt the participant to the needs of the measurement tool rather than vice versa.Conclusions: The current literature is plagued by inconsistencies in defining key concepts and terminology and in the measurement approaches and tools used to operationalise key variables of interest. Findings are discussed in relation to wider research practice and we offer nine recommendations for future research.Keywords: Autism, Minimally Verbal, Complex Needs, Language and Communication, Research methodology, Measurement, Ethics, Consent, Assent.