Describing the communication of autistic people during experiences of distress: A scoping review.
Karys Oldenburg, Tasia Gibbons, Christie Welch and 2 others
PMID 41689849WHAT IT FOUND
Autistic people often lose verbal capacity or withdraw when distressed, relying on behaviour or non-verbal cues instead.
Proxy reports frequently miss these communicative attempts, interpreting them as aggression rather than distress signals. First-person accounts reveal a bidirectional cycle where communication failure worsens distress.
Key findings
01Autistic people’s self-reports describe communication difficulties and feelings during distress, whereas most proxy-only reports did not mention communication difficulties.
02Behaviours that challenge (BTC) were identified as forms of expression in nine studies, but their function was often speculative when interpreted by proxy reporters.
03Facilitators to communication during distress included visual aids, reducing communicative demands, and adjusting the environment, but no studies explicitly discussed barriers.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The review excluded grey literature (blogs, social media), which may contain more first-person autistic perspectives. Academic literature often underrepresents autistic people with intellectual disabilities, AAC users, and marginalized groups, limiting generalizability. Distress is subjective and lacks a unifying taxonomy, making consistent identification across studies difficult. Most included studies relied on proxy reports, which the authors note may miss the communicative function of behaviours. The review describes how communication is *talked about* in literature, not necessarily how it *is*, as it synthesizes existing descriptions rather than primary observational data.
Declared interests
The authors declared no potential conflicts of interest. One author (M.A.) is funded by a Social Sciences and Humanities Research Council (SSHRC) Canada Graduate Scholarship Doctoral Award.
The easy way to misread this
Do not assume that behaviours identified as 'aggressive' or 'challenging' in proxy reports are intentional acts of non-compliance. The review indicates that these behaviours often serve a communicative function during distress, and proxy reporters frequently fail to identify this intent, leading to potential misinterpretation and inappropriate intervention.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →