Pain does not always look or sound the way adults expect. An autistic child might use words, AAC, pointing or a personal phrase. Another child might become quieter, move differently, guard one body part, sleep poorly or show a sudden change in behaviour. These signals are not proof of pain, but they deserve curious, careful attention.
A 2023 scoping review of pain communication in autistic children found that children use varied verbal and nonverbal responses. It recommends combining the child’s own report, observation and input from familiar caregivers. A 2024 systematic review of autism pain assessment also supports a personalised approach.
Make a pain communication kit when your child is well
- Choose a location tool. Try a simple front-and-back body outline, photos of body parts, or body-part buttons on the child’s AAC system.
- Choose an intensity tool. Some children prefer faces, colours, gestures or words such as “small, medium, big”. Do not insist on a numbered scale if it is confusing.
- Add an action choice. Offer clear options such as “break”, “quiet”, “drink”, “trusted adult” or “doctor”. Communication should lead to support.
- Record the child’s individual signals. Note their usual pain words, movements, facial expressions and comforting supports. Include what makes examinations easier or harder.
Practise without creating pressure
During ordinary moments, label neutral sensations: “My feet feel cold” or “My stomach feels full.” Ask occasionally, not repeatedly. Accept every reliable communication method, including AAC and gestures. AutDHD’s AAC-at-home guide has ideas for modelling words without demanding a response.
Keep a one-page health passport in your phone and go-bag. The UK National Autistic Society offers a free autism health passport designed to share communication and sensory needs with healthcare staff.
A sudden change can have many causes. Use the ideas in A Sudden New Behaviour, but do not wait for perfect communication when illness or injury is possible. Seek urgent medical help for severe or rapidly worsening pain, breathing difficulty, serious injury, unusual unresponsiveness or any situation that feels unsafe.
This is general information shared for parent awareness, not medical advice. Every child is different — please confirm decisions with your child’s doctor or a suitably qualified professional.