Recognizing it is Autism Awareness Month, we wanted to re-run a popular blog about children, communication, and pain. Recognizing that communication is key in all aspects of life, it is essential that children learn how to display this when needed. However, sometimes, especially for those with Autism Spectrum Disorder, communicating feelings, discomforts and pain can be quite difficult. The following post written in November 2013 discusses non-verbal pain communication and helps parents to know what to watch for.
When Children Can’t Communicate Pain
A few years back my daughter (age five at the time) seemed a bit “off” when she came home from school. She was withdrawn, tired, and “didn’t want to talk about it”. She is my kid that struggles to communicate her needs, especially when she is upset, so I tried to give her some time and control over when she would be comfortable talking about it. Eventually, I went over to her and in stroking her hair realized this had blood in it. I pulled her bangs aside and noticed a bump, large bruise, and blood on her head, in her hair, and around her temple. When I asked her what happened, she burst into tears. Through some coaxing, I got her to tell me that she had fallen on the playground, hit her head, and was so embarrassed about this she didn’t want to tell anyone. Her teacher picked up on the fact that something was wrong and sent her to talk to the principal. To the principal she reported nausea, a headache, and was visibly upset, but wouldn’t tell the principal what happened, and the bump and blood on her head and hair was not noticed. After I got her to calm down, and did some basic mommy first aid, I explained to her the importance of telling adults about these things in case they are serious and need immediate attention.
The ability to communicate pain and discomfort is invaluable – it not only allows a person to express how they are feeling in order to receive medical attention, but also can help them to obtain medication or treatment to make the pain more manageable. However, many children (and some adults for that matter) are unable to express their pain due to a difficulty with communication, or a developmental or intellectual disability. This can make it very difficult for health practitioners and family members to decipher their level of pain following an injury, medical procedure, or with illness.
For children that cannot verbally communicate pain, there are other methods that can help. For example, the Non-communicating Children’s Pain Checklist (NCCPC-R) was designed for children who are unable to speak due to a cognitive disability. The NCCPC-R can be completed by a caregiver within the child’s home environment, and measures observations of the child’s vocalizations, social interactions, facial expressions, activity level, appearance of body and limbs, physiological signs, eating, and sleeping. In addition to the home-based version, a postoperative version of the NCCPC-R also exists.
Interestingly, studies have shown that the expression of pain by children with Autism Spectrum Disorder is not significantly different from typically developing children or even from children with intellectual disabilities. However, what does seem to be different is the length of the behavioral reactions of children with Autism, after the source of pain has been removed. This information may be surprising to some, as it is often thought that children with Autism are insensitive or have a high tolerance to pain. Therefore, caregivers and healthcare professionals need to be aware that although a child with Autism (or any developmental disability for that matter) may be unable to verbally communicate their level of pain, we cannot assume that they are not in pain. We need to be able to look beyond verbal communication. One method, using observation, is the FLACC scale (Face, Legs, Activity, Cry, Consolability). With this, pain in children and adults who are unable to communicate are observed through are range of symptoms that are scored from 0 to 2.
So while my daughter is capable of communicating verbally, emotional upset and embarrassment prevented her from taking the important step of telling an adult about what happened. Through her behavior and presentation, her teacher, the principal and I were able to see that something was wrong, and eventually, when she was comfortable talking about it, I figured out what happened. Thus, behavior, verbal or not, is a key indication of how a child is feeling. It is important for parents and healthcare providers to be aware of the signs of pain in children, verbal or non-verbal, as their bodies can very well communicate their level of pain when they cannot do so through words.