“Don’t panic” were the first words my kid’s teacher said when she called me out of the blue. “The ambulance is en route to us. You better come fast. Your son got smacked by the open window and there’s blood coming from his head. But no worries, he’s not crying. “
I bet those are the worst words you wanna hear and the “don’t panic” thing doesn’t help. I got to the kindergarten in less than 5 minutes and found my son looking pale and frozen in his emotions. Only when he saw me he started crying and saying he wants to go home.
When I asked what happened, the kindergarten staff said the kids were playing outside and Idan tried to catch a ball but crashed into the open window. But nobody noticed that it was a big deal. He didn’t shed a tear and just stood there with a blank face. He was lost. He wasn’t crying because he didn’t know what to do. He was lost and had never been in that situation before. So he just stood there, not moving, until one of the staff members noticed tiny drops of blood falling from his head onto his shirt.
He was so relieved when he saw me; he let himself relax and started crying. He was hurting, scared, but he was with me and knew I’d help.
That situation made me realize something else we need to think about as parents of children with ASD: kids with autism don’t know how to show their feelings and pain unless we teach them how to talk about it.
How can we help a kid with autism tell us when something’s wrong?
Teaching them how to communicate their pain or discomfort is important. Begin by using the term “hurt” alongside them when they experience a minor injury, such as a scraped knee or a sore throat. If they can already express pain, assist them in indicating and identifying the specific body part that is hurting. It’s best to teach when the child feels well (the “Mr. Potato Head” toy, video modelling method, or magnetic drawing board can help with this). A child who doesn’t speak can use an image of a band-aid as a visual cue. Try composing the phrase “I have a pain in ...” Let the child try to name the body part or select a picture of the relevant body part. Even if a child can speak, they may need pictures as visual support – it will make it easier for them to understand this concept. Try sticking an actual band-aid on different body parts in the picture. After that, you and the child can practice and supplement the phrase verbally or with the help of pictures: “The boy has a pain in .” This type of training can also be conducted using a mobile communication application and/or sign language.
On certain occasions, pain can be misinterpreted as an amplified reaction to sensory stimuli, which is a common occurrence in children with autism (like a child feeling an itchy neck because of a clothing label or experiencing discomfort in a woollen sweater). Help the child expand their vocabulary by introducing the phrase “uncomfortable / unpleasant” so they can understand the difference between pain and physical discomfort.
Recognizing the early signs of pain.
Recognizing Nonverbal Cues of Acute Pain
Autistic individuals, both children and adults, who struggle with verbal communication, might display different signs to show their pain. Although these signs may be related to other factors, it is vital for those who are near individuals with autism to be attentive in recognizing these indicators. Pay attention to these signals:
- Grimacing, pursed lips, furrowed brows, a scrunched-up nose, and closed eyes;
- Moaning, crying, or sobbing
- Tension in the lower jaw
- Teeth grinding
- Fists clenched
- Muscle twitches
- Irregular or rapid breathing
- Walking with a limp or showing a preference for one limb
- Muscles that seem tight
- Showing an abundance of caution or protective movements towards a specific body part, like placing hands on it.
Identifying Nonverbal Indicators of Chronic Pain
For chronic pain, children may grow accustomed to the discomfort and not exhibit as clear-cut signs. Some indicators of chronic pain might include:
- Sleep disruptions, like difficulty starting sleep or experiencing frequent awakenings throughout the night. Lack of sleep can exacerbate the effects of long-term pain, resulting in a harmful cycle of even less sleep for the child.
- Altered eating habits. Children enduring chronic pain may feel nauseous and lose their appetite, which can lead to weight loss.
- Heightened anxiety can be a consequence of enduring pain. The child might seem unable to sit still, may fidget excessively, pull at their clothing as though wishing to escape it, and show an uptick in repetitive motor behaviours.
- An increased tendency to withdraw and avoid social interaction. The child might resist activities like rising, dressing, bathing, or walking—activities they may have previously engaged in willingly. In certain instances, children may prefer to lie down or display reluctance to leave their bed.
- The emergence of aggressive behavior when touched or when there’s an attempt to motivate the child to move. In chronic pain, such aggression is a reactive measure—the child cannot articulate their distress, and intense pain can lead to confusion and an instinctive need to protect oneself.
The key to identifying pain in a child or adolescent with Autism Spectrum Disorder (ASD) who cannot verbally express it lies in careful and consistent observation. Should there be sudden and uncharacteristic changes in behavior, it is imperative to rule out pain through medical examination.