Could pain or illness be changing my child’s behaviour?

Your child begins hitting their head after meals. A teenager who usually showers independently will not enter the bathroom. A child wakes repeatedly, pushes adults away and cannot settle in their usual position.

These changes may have several explanations. Pain or illness needs to stay on the list, especially when the behaviour is new, intense or unlike the child's usual pattern.

Begin with the change from their baseline

Parents often know that something is wrong before they know what it is. Describe the difference rather than waiting for certainty:

Since Monday, Maya has woken four or five times each night, eaten less, held the left side of her face and screamed when her toothbrush comes near her back teeth.

That is more useful than “Maya has been difficult all week”. It gives a health professional a start point, a cluster of observable changes and a possible location without claiming a diagnosis.

Look for change in:

• energy, alertness or usual interests;
• sleep position, waking or ability to settle;
• appetite, drinking, chewing or swallowing;
• wee, poo, periods or toilet use;
• walking, climbing, sitting or use of one side;
• skin colour, swelling, rash or temperature;
• tolerance of touch, clothing or personal care;
• communication, interaction or familiar skills; and
• frequency, intensity or timing of distress.

A gradual pattern matters too. A child may adapt around discomfort until another demand makes the cost visible.

Pain does not require a clear verbal report

Some children cannot identify where a sensation comes from. Others have the words when calm but lose them under pain, fear or sensory load. “No” may mean “do not touch me”, “I cannot move that way” or “I do not know what is happening”.

Notice what the body does. A child may guard one side, change gait, press an area, avoid chewing, seek unusual pressure, remove clothes, freeze during care or become distressed at a particular movement. They may become quieter rather than louder.

Do not use pain tolerance as a test. A child who appears calm may still be unwell; a child whose response looks intense may be frightened, overwhelmed and hurting. Your task is to report the pattern, not judge whether the display is proportionate.

NICE autism guidance asks professionals to consider coexisting physical conditions, including pain and gastrointestinal problems, when behaviour becomes challenging ^[1]. The principle is important beyond autism: behaviour should not make physical health invisible.

Check ordinary body needs without turning home into a clinic

A short practical scan can help you organise what you have noticed:

• Mouth and teeth: change in chewing, brushing, breath, drooling or touching the face.
• Ears and throat: pulling away from sound or touch, swallowing changes or distress lying down.
• Stomach and bowel: appetite, bloating, pain, stool pattern, soiling or avoiding the toilet.
• Bladder: frequency, accidents, pain signs, smell or reluctance to wee.
• Skin and clothing: redness, pressure marks, bites, cuts, tight footwear or a new product.
• Movement: limping, stiffness, reduced range or avoiding a previously easy action.
• Periods and puberty: timing, bleeding, cramps, skin changes and privacy needs.
• Medicines: recent start, stop, missed dose or dose change, including non-prescription products.

This is not a diagnostic checklist. Do not press, examine or treat something beyond ordinary care, and do not stop prescribed medicine without medical advice. Use what you observe to decide whether to contact a pharmacist, GP, dentist, NHS 111 or emergency service.

Do not overlook constipation and soiling

Constipation can be painful and may show through appetite, stomach pain, straining, hard stools, withholding or soiling. Overflow soiling happens when runny poo leaks around hard poo; it is not something a child is doing on purpose ^[2].

If you think your child may be constipated, NHS advice is to see a GP and get help early ^[2]. Avoid anger or a reward-and-punishment plan for accidents while a physical cause is possible. Record when the child last passed stool, what it looked like and any pain or appetite change. Preserve privacy, especially for older children.

Make the appointment easier to use

Bring a one-page timeline rather than a large file of unsorted observations. Include:

• what changed and the date it began;
• the child's usual baseline;
• visible or measurable signs;
• times, movements, meals or settings linked with the change;
• sleep, eating, drinking and toilet changes;
• current medicines and recent changes;
• what the child has communicated in any form; and
• what you have already tried and its effect.

Video can sometimes show a movement or episode that does not happen in the room, but protect the child's dignity and ask the service how to share it securely. Do not record a crisis when the child needs immediate help.

Explain communication needs at the beginning:

Leo may agree automatically when he is anxious. Please offer one question at a time, show him before touching and let me tell you what is different from his normal movement.

The GP and NHS Prep Pack can help you put the main concern, timeline, medicines and questions on one page.

If part of an examination is inaccessible, record that clearly. "Would not cooperate" hides whether touch was unexpected, the position caused pain, language was not understood or the child needed more preparation. Ask what the clinician could assess, what remains uncertain and whether another method, setting or appointment is needed.

Do not practise a painful examination at home. You can make the sequence more predictable with photographs, a simple body outline or showing safe equipment, while keeping the message honest that the clinician may need to look or touch. Agree a stop or pause signal where medically possible. If urgent care cannot wait, tell staff which communication and sensory supports are most likely to preserve access without promising the child complete control over essential treatment.

Share the change across settings

Ask school, nursery or another carer for observations rather than a verdict. “He was fine here” may mean there was no visible incident; it does not answer whether he ate, used the toilet, moved differently or needed more prompting.

Request a few facts from the same period: food and drink, toilet visits, sleep at nursery, physical activity, communication and any moments of withdrawal or distress. Tell them what has changed at home so they know what to notice.

Do not ask staff to diagnose the cause. A concise account from more than one setting can show whether the change is continuous, linked with an activity or emerging at a particular time. The guide to keeping a record for school and GP meetings can help you separate observations, the child's account and questions for the clinician.

Keep supporting the child while you seek an answer

Medical assessment and practical support can happen together. Reduce avoidable demand, make movement gentler, use familiar communication and allow rest. Keep essential boundaries around immediate safety.

Do not make comfort conditional on “good behaviour”. A child in pain may have less access to skills they usually use. At the same time, pain does not make it safe for someone to be hit. Move people or objects, use few words and get additional help when needed.

Avoid repeatedly asking “What hurts?” after the child has shown they cannot answer. Offer concrete options without forcing a choice: “Show me with your hand, point to the picture, or I can tell the doctor what I have noticed.” Accept “don't know” as information.

Know when observation has finished

An observation record should support help, not postpone it. Contact a GP when you are concerned about a new or persistent change. NHS 111 can assess symptoms and advise what to do when urgent help is needed or you are unsure about 999 ^[4]. For a child under five, call 111 rather than relying on 111 online.

NHS 111 Wales advises urgent medical help for signs that a baby or toddler may be seriously ill, including difficulty breathing, being hard to wake, unusual colour, green vomit, reduced feeding or drier nappies ^[3]. The page gives age-specific detail; use it directly rather than relying on this article as a complete list.

Call 999 for a life-threatening emergency. Follow the call handler's instructions. If a child's condition changes while help is on the way, call again ^[4].

For an older child, new confusion, collapse, serious injury, breathing difficulty, altered consciousness or another severe change also requires urgent assessment. Trust your knowledge of what is markedly different for your child.

If the first explanation does not fit

A normal examination or one ruled-out cause does not mean the behaviour is intentional. Ask what has been considered, what to monitor and when to return. There may be a different physical cause, anxiety, sensory distress, a communication mismatch or several pressures together.

Continue a brief observation log if the change is safe to monitor. Separate facts from possibilities:

Observed: cries and bends forward within 20 minutes of dinner on four evenings. Possible questions: pain, constipation, portion size, sitting position or anticipation of bedtime.

Do not present the possibilities as conclusions. A useful record makes uncertainty clearer.

A useful next step

Write the sentence “This is different because…” and add three concrete changes from your child's baseline. Check sleep, eating, drinking, toileting, movement, skin, teeth and recent medicines.

If you are worried, contact the appropriate health service now. Take the short timeline and explain how your child usually shows discomfort. The aim is not to translate every behaviour into a medical symptom. It is to make sure a child who cannot give a conventional pain report still has their health taken seriously.