How Do You Know When A Child With Autism Is Feeling Pain?

My son Marc has always had difficulty telling me about his physical feelings. Like many parents of children with autism, I can’t depend on him to tell me if he is hungry, thirsty, cold, hot, or in pain. Instead I have to rely on my own senses of observation, basic idea of timing around meals etc, or my feelings of temperature, to gauge what his needs or discomforts are.

Marc suffers from advanced, crippling arthritis. At medical appointments, doctors always asked him to rate his pain levels on a scale of 1 to 10, a task which is impossible for him to do. The only way to measure his pain is through MRI’s and X-rays. With no expression of pain, it is difficult to treat Marc’s symptoms because even with medications,  Marc gives no verbal feedback about how he feels on the medication. I have to use my own observations to decide if his medication is working – observations such as whether there is more fluidity in his movements, or if there is an increase in physical activity such as dancing, an activity he enjoys.

I have recently learned this is because he has a problem with interoception, the eighth sense. Interoception is the ability to know and express internal states such as hunger, tiredness, thirst, cold, pain etc…abilities that many of us take for granted, and that many people on the spectrum seem to lack. But why are those with autism missing this ability?

Historically, children with developmental disabilities were excluded from pain research, but this past month a new (as yet unpublished) study showed conclusively that people with autism exhibit abnormal brain responses when a painfully hot object is placed against their skin. The brain’s response to pain has three phases – early, intermediate and late. In an experiment with 17 people with autism and 16 people without, a small piece of metal was taped to the skin and heated to the point of causing discomfort/pain but not injury. The people without autism were still responding to the pain ten seconds after it stopped, but the people with autism had no brain response after the ten seconds.

“These patterns suggest that the brain’s initial processing of pain may be normal in autism. But later steps in pain processing, having to do with cognitive and emotional evaluation of pain, may not be.” said Michelle Failla, a postdoctoral researcher in Carissa Cascio’s lab at Vanderbilt University in Nashville, Tennessee, who presented the work.

This research is important because it lets parents and professionals know that there are physiological reasons behind an autistic person’s inability to explain their states, other than just the limited language skills that many of those with autism have. So how do you tell if someone with autism is experiencing pain, hungry, cold etc?

Observe observe observe. Is the person sweating? Are they shivering? Yawning? The human body has ways to express it’s discomfort that we can see. Keep a careful eye on your child or student to see how they are behaving. Sometimes the body will “show” what it needs, even if the person can’t tell you. But what about when it doesn’t?

Pay attention to unusual behaviour. Is the child listless while listening to music they would normally dance to? Do they seem like they don’t want to move, or are less engaged than normal during activities they normally enjoy? Or maybe they are acting out more than usual. Difficult days and challenging behaviour can sometimes be the sign of an underlying or chronic illness from those who can’t use words to describe what’s happening.

The Non-communicating Children’s Pain Checklist has a list of observations that you might find helpful for examples of what to look for, and can be filled in and taken to a doctor or hospital if necessary.