I was catching up on some autism-related reading the other day when a headline caught my eye. The article talked about sensory differences in autism; specifically, about how children and adults with autism experience pain. The headline referred to autism’s “unseen agony” and its “house of pain”. Reading that was like a swift punch in the gut. Yes, I knew that children with autism were more likely than typical children to experience pain, which they often cannot communicate or locate on their bodies. I also knew that many children on the spectrum live with chronic stomach aches that they often do not mention to anyone. But “house of pain”? That sounded like a horror movie title. I needed to know more, and I needed to tell other parents about their children’s pain experience and, most importantly and urgently, how it can be addressed.
I’ve spent a few days combing through 30 years’ worth of research on the topic. There aren't enough studies focused specifically on children, so I looked at research on adults as well. What I have learned includes barriers to recognizing pain, signs of pain and discomfort, and strategies that parents and professionals can use to help children with autism deal with pain.
The pain we are talking about here can happen in everyday life (stomach aches, headaches, scratches, bruises, small and large injuries) as well as in medical contexts during vaccinations, injections, procedures and post-surgery. I hope your child experiences pain as rarely as possible, but should it ever be an issue, I hope you find information below to be helpful.
But first, to debunk a myth. There is an idea that people with autism are insensitive to pain and can tolerate intense pain, or intense cold or heat, without distress. As often happens, research results on this aren’t fully consistent. However, generally, insensitivity to pain is reported in case studies, which present an in-depth story of one individual from whose clinical situation we can learn. These case studies show that some people on the spectrum indeed have pain insensitivity. Larger studies, however, do not support the idea of pain insensitivity in autism. Instead, they suggest that people on the spectrum feel pain as intensely as neurotypical people.
At the same time, however, people on the spectrum can respond to pain in dramatic and unusual ways, which makes it hard to understand that they are in fact experiencing pain. For example, children and adults on the spectrum can bang their head or bite their hands in response to pain. These behaviors, which are called self-injurious, have been considered to be proof that they do not feel pain – how else could they be hurting themselves? But the answer turns out to be different. People on the spectrum can be very sensitive to sensory input, including pain, and if they don't know how to calm themselves down, their coping strategy can be to try to comfort themselves by these dramatic behaviors. This is just one misunderstanding that makes it difficult for children and adults on the spectrum to have their pain recognized and get help for it. Some other ones are discussed below.
What makes it difficult to recognize pain in children and adults with ASD?
Inability to communicate to others about pain;
Inability to pinpoint where in the body the person feels pain;
To those who do not know the person who is experiencing pain, it can be difficult to interpret facial expressions of individuals with ASD for signs of pain, because facial expressions of those with ASD do not always correspond to what they are actually experiencing;
Children with ASD might have body language that does not reflect pain that they are experiencing;
Children with ASD may express negative emotions during pain that do not come across as being connected to pain. For example, child in pain can be screaming or can stop following directions, actions which could mislead those around them into trying to find explanations for those behaviors that are not related to pain;
Self-injurious behaviors can be understood as signs of pain insensitivity, when in fact they can be an expression of pain sensitivity (this was discussed above);
Many children and adults with ASD do not do well with traditional ways of assessing pain, such as FACES self-report scales (visuals included below for reference). These scales require an ability to read facial expressions, which is often a challenge for those with autism ;
Children and adults with ASD might not understand the connection between what is causing them pain and the pain experience (difficulties with cause-and-effect relationships);
They might not know common, socially accepted, ways of responding to pain that are easily understandable to others around them;