WHAT'S TRUE, WHAT'S NOT, WHAT'S UP: AUTISM AND PAIN



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;

  • They might have intellectual delays that make it difficult to communicate;

  • They might have trouble with abstract thinking that is needed to understand and name their own emotions and sensations related to pain;

  • They might have other sensory sensitivities that interfere with their ability to perceive their own pain.

These are significant barriers. As a parent, of course, it is extremely concerning if your child is in pain and you do not have a way of knowing about it and helping with it. It is also deeply concerning if medical professionals cannot recognize pain in a child during or after procedure or treatment. Even if child is clearly in distress, it can often be difficult to figure out what bothers the child.


There was an example in one of the research papers of a child on the spectrum with average IQ who was referred to a school clinic with subtle changes in behavior, such as less interest in socializing. The boy’s complaints were vague and limited to “touch… feels bad.” School medical professionals could not find anything wrong with him, and neither could his pediatrician. After two weeks of repeated visits, the boy was told to go back to the classroom and not come back to the clinic. Thankfully, the boy's teacher was highly attuned, and because of continuing behavioral change referred the boy back to the clinic. At that point, someone had an idea to send him to a dentist, who diagnosed a significant abscess that, judging by its size and location, created a lot of pain and required immediate treatment. This example shows how difficult it can be for a child with ASD to let others know that they are hurting, how this can interfere with timely treatment and even create a threat to child's health.


I have encountered some examples of this in my practice. I worked with a girl whose earrings, the backs of which had sharp edges, dug deep into the backs of her earlobes and created wounds that became infected. The girl had long hair and her family did not see the wounds. The girl knew about the problem, but only reported it to her mother after several days. She was hesitant to mention it because she was afraid that she did something wrong. She only reported the redness and never reported pain, although this must have been painful. She did report relief when the situation was taken care of.


I have also worked with an elementary school age boy who one day did not want to go to school because he had a stomachache. When his parents asked when it started, he said he has had it every day for a long time. For him, this pain was a part of daily life. He simply did not know to report it. This, for me, really brings home the need for actively asking a child on the spectrum whether or not they are having any discomfort.

 


So, what can give parents and other caregivers an indication that someone with ASD might have pain?

  • Behavioral problems that are new or intensified;

  • Change in “usual” behaviors. Note that these can be very subtle and can include crankiness, being less active, rocking unusually, acting off, irritability, and less interest in social contact;

  • Changes in sleep patterns/Sleep problems;

  • The increased frequency and severity of self-injury, aggression, self-stimulation (i.e. rocking back and forth, head banging) and stereotypy;

  • Special words child uses to describe pain. One study found that each child had their own preferred words. These included “hurt”, “pain”, “cry”, “sad”, “scream”, “sore”, “owie”;

  • Grimacing, “guarding,” energy-saving movements, increased heart rate, and lessened sociability have also been described as indicators of pain in those with ASD.

The bottom line here is that it can be difficult for those who do not know the child or adult with ASD to understand and evaluate their pain. It is crucial for someone who is very familiar with a person to be present during pain experience or assessment. Otherwise, pain can be overlooked. Also, because we know that children with autism are more likely to experience pain than children without autism, and because they can have trouble communicating about it, pain always needs to be considered as a possible explanation for any concerning change in functioning.