As parents, Josée and I have grappled with a significant concern: our non-verbal daughter's inability to communicate if she's experiencing pain, and more distressingly, the specific location of that pain within her body. Just a few months ago, our daughter was exhibiting several new and alarming behaviours. She was agitated, had lost her appetite, and was making unfamiliar and distressing sounds. It was clear that something was wrong, but we couldn't pinpoint the cause. Concerned, we took her to the local children's hospital. After enduring a 15-hour wait in the emergency room, we finally had some answers.

For caregivers and loved ones of non-verbal individuals with autism, understanding when they are in pain and where the pain is located can be a significant challenge. Communication barriers can make it difficult for non-verbal autistic individuals to express their discomfort verbally. However, there are several signs and strategies that can help caregivers recognize when a non-verbal autistic person is in pain and identify the source of their discomfort.

Changes in Behavior:

• Agitation, irritability, or increased aggression
• Increased stimming behaviours (e.g., hand-flapping, rocking)
• Withdrawal or decreased interaction with others
• Increased vocalizations or vocalizations that are different from their usual sounds

• Facial expressions indicating discomfort (e.g., grimacing, frowning)
• Guarding or protecting a specific body part
• Changes in posture or body movements (e.g., rocking, pacing)
• Changes in sleep patterns (e.g., difficulty falling asleep, waking frequently)

• Refusal to participate in activities they usually enjoy
• Changes in eating habits or refusal to eat
• Changes in toileting habits (e.g., refusing to use the toilet, holding urine or stool)

Strategies to Identify the Source of Pain:

1. Observation:

   • Carefully observe the individual for any signs of discomfort or distress.
   • Pay attention to their behaviour, facial expressions, and body language.

2. Use Visual Supports:

   • Use a visual communication board to help identify which part of the body may be troubling. Download our free communication boards
   • Use a visual body map where the individual can point to or touch the area of their body that hurts.

3. Keep a Pain Journal:

   • Keep a journal to track any changes in behavior or physical appearance that may indicate pain.
   • Note the time of day, activities, and any other relevant information.

4. Consult with Healthcare Professionals:

   • Seek guidance from healthcare professionals, such as doctors or specialists, to rule out any medical issues.
   • If you feel that it may be an emergency, always seek out medical help immediately

Conclusion:

Recognizing and addressing pain in non-verbal autistic individuals requires patience, observation, and understanding. By learning to recognize the signs of pain and using effective communication strategies, caregivers can provide the necessary support and comfort to help alleviate discomfort and improve the individual's quality of life.

Understanding pain in non-verbal autistic individuals is a crucial aspect of providing compassionate and effective care. By being attentive to their needs and using the appropriate strategies, caregivers can help ensure that these individuals receive the support and comfort they need to thrive.

Don't have a printer or laminator? Our laminated communication boards are also available for purchase:

'My Body Hurts' Laminated Communication Board

'My Feelings' Laminated Communication Board

'My Feelings' and 'My Body Hurts' Laminated Communication Board Set