Billet publié sur Bluesky le 24/05/2026 11:19

Résumé

During 2025, I invited Professor Vikram Jaswal and colleagues to submit a Commentary to Autism Research on alternative communication methods for nonverbal or minimally verbal autistic individuals (Jaswal et al. 2026). The genesis of this request came from a conversation that I had with the parent of a teenage participant in the UC Davis MIND Institute Autism Phenome Project. I contacted her to ask why she and the participant had not returned for their 5th (adolescent) visit. Her response was that she felt that it might be embarrassing to the participant because the standard behavioral assessment tools that we typically use did not truly represent his capabilities. Even though we had repeatedly assessed the participant as having profound intellectual disability, he had apparently recently graduated from high school and was using a letter board to communicate. The mother wondered whether we could carry out his adolescent assessments using this form of communication. This experience got me wondering whether there were other participants in our program that we had underestimated their cognitive skills because the assessments we use are designed for speaking individuals. This experience forced me to review the checkered history of facilitated communication in autism and the serious claims of manipulation and worse that are associated with these techniques. During my reading, I found the work of Professor Jaswal (e.g., Jaswal et al. 2020) which seemed to be well designed and rationally interpreted. I thus approached Professor Jaswal with the idea of writing a Commentary that would provide a brief overview of the history of assisted communication methods and some sense of a way forward for evaluating the scientific validity of these techniques. Subsequently, during the summer of 2025, I attended a conference1 in Stamford CT that featured adult autistic individuals who used letterboards, iPads, or keyboards as their primary means of communication. My goal was to determine whether I thought that these individuals were being manipulated by their facilitators or conversely whether they were communicating their own thoughts. My general impression was that there was little or no manipulation and that individuals who could not express themselves verbally had found an alternative method to do so. Of course, I am not an expert in this area, and my impression is only anecdotal. My hope is that the Commentary by Professor Jaswal and colleagues will restart a dialogue about these techniques and address questions such as: Which autistic individuals can benefit from them, and which cannot? Are there scientific strategies to demonstrate that the autistic individuals are expressing their own thoughts rather than being manipulated by their facilitators? Can there be a conversation between the autistic individuals using alternative forms of communication, their facilitators and language scientists who specialize in autism? Currently these camps are not talking to each other. The Commentary was peer reviewed when initially submitted and there were differences of opinion expressed by the reviewers. I knew that publication of the paper would be controversial but decided that the benefits outweighed the concerns. I hope that autism scientists will keep an open mind on this article and think of innovative ways to carry out robust science on this topic. What if there is a sizable subset of autistic individuals who are cognitively capable but cannot communicate their wishes because they are unable to talk? Should not we be devoting additional resources to figuring this out? Data sharing not applicable to this article as no datasets were generated or analysed during the current study.