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.
Now, to the most important question – what are
Practical strategies for recognizing pain in children and adults with ASD and helping them deal with it?
Thankfully, the list is pretty long.
Decreasing perseveration on pain has been reported as very helpful. Children and adults with ASD can hyper focus and perseverate (get stuck) on their pain experience. For example, a child who experienced pain can continue screaming for weeks, even though the initial injury has fully healed.
Combining assessment of professionals who aren’t familiar with the child with assessment of caregivers who are closely attuned;
Asking different questions. Not “How much pain are you in?” but “How uncomfortable are you?” in addition to using verbal and pictorial (FACES) pain scale;
Establishing timeline of events to try to identify possible events that could lead to pain or physical discomfort;
Identifying those at the greatest risk for persistent self-injurious behaviors and intervening as early as possible;
Considering and eliminating physical and environmental conditions that can give rise to pain, chronic stress, and discomfort;
Treating associated problems such as sleep, anxiety and an irritable mood as they may decrease one's ability to cope with pain;
Using tools and methods that are developed specifically for those who have autism;
Teaching communication and coping skills to individuals with ASD to “replace” self-injurious behaviors with behavior or communication that will serve the same purpose, for example, be soothing or get help in discomfort being addressed;
Educating teachers, professionals and caregivers that there can be differences in how children and adults on the spectrum communicate about pain (for example, they might seek out comfort less often) to avoid an underestimation and undertreatment of pain and discomfort;
Informing teachers, professionals and caregivers about each child's and adult's specific pain cues (i.e. what subtle changes in behavior or appearance signal pain);
Teaching individuals with ASD how to cooperate with medical and diagnostic procedures, so that assessment and treatment of pain are possible;
Keeping in mind that sensory input can cause of discomfort and may be perceived as being highly unpleasant or even painful by many individuals with ASD;
Teaching self-soothing to children and adults with ASD;
Using individualized approach to assessing pain with each child and adult with autism;
Knowing child’s preferred words for pain and using them while assessing pain. Children seem to prefer those descriptive words to using scales with numbers (i.e. on a scale from 1 to 10…);
Asking the child to say what has worked in the past to reduce pain and use those strategies in planning care;
Involving parents or closely attuned caregivers. Parents know when their children are in pain and children depend on their parents for help;
Using strategies that children report to be helpful, such as sleeping, crying, telling someone, trying to think and do something else, and taking medicine. Children reported distraction from pain to be extremely helpful. Children didn’t like to be asked about pain all the time, but they preferred it when someone checked in once in a while;
Keeping in mind that children with ASD as young as 6 years old, and children with ASD with verbal skills of a typical 6 year old can communicate effectively about their pain, can locate it on the body and have understanding of what can help them.
This was a very long post. Let me make things easier by summarizing the main points. May your child never be in pain.
Pain can be hard to recognize and assess in those who have ASD, but with care and attention it is possible;
Children and adults with ASD feel the same intensity of pain as neurotypical individuals, but their communication of pain experience and pain-related behaviors can be different;
When children with ASD have or develop self-injurious behaviors, sleep interruptions or other dramatic behavioral problems, pain should always be considered as a possibility and assessed thoroughly;
Pain in children and adults with ASD cannot be assessed using standard procedures. Clinicians need to use words that the person with ASD prefers, ask questions that make sense to the person, and not rely on facial expression or number scales;
If clinicians working with child aren’t trained in ASD, they need to be educated about it in order to be helpful;
Children and adults with ASD need to be taught how to communicate about pain. They also need to learn how to deal with various medical examinations and procedures;
Children and adults with ASD need to be taught how to self-soothe and cope with pain.
C. S. Allely. Pain Sensitivity and Observer Perception of Pain in Individuals with Autistic Spectrum Disorder. The Scientific World Journal, Volume 2013
Study of the relationships between self-injurious behavior and pain reactivity in infantile autism, Tordjman S, Antoine C, Cohen DJ, Gauvain-Piquard A, Carlier M, Roubertoux P, Ferrari P. L'Encephale [01 Mar 1999, 25(2):122-134]
D. J. Simons and P. W. Land, “Early experience of tactile stimu-lation influences organization of somatic sensory cortex,”Na-ture,vol.326,no.6114,pp.694–697,1987.
W. Dunn, B. S. Myles, and S. Orr, “Sensory processing issuesassociated with Asperger syndrome: a preliminary investiga-tion,”American Journal of Occupational Therapy,vol.56,no.1,pp. 97–102, 2002.
R. L. Messmer, R. Nader, and K. D. Craig, “Brief report: judg-ing pain intensity in children with autism undergoing vene-puncture: the influence of facial activity,”Journal of Autism and Developmental Disorders, vol.38, no.7, pp.1391–1394,2008
Ely, Elizabeth PhD, RN; Chen-Lim, Mei Lin MSN, RN, CCRC, Carpenter, Kate M. II MEd, CCLS; Wallhauser, Emily MSN, RN, CRNA; Friedlaender, Eron MD, MPH. Pain Assessment of Children with Autism Spectrum Disorders; Journal of Developmental & Behavioral Pediatrics: January 2016 - Volume 37 - Issue 1 - p 53-61.
S. W. G. Derbyshire and P. Bennett, “Fetal stress responses, ”Lancet, vol. 344 ,no. 8922, p.615,1994.
S. Tordjman, G. M. Anderson, M. Botbol et al., “Pain reactivityand plasma𝛽-endorphin in children and adolescents withautistic disorder,” PLoS One, vol.4, no.8, 2009
Ciaran Clarke. Autism Spectrum Disorder and Amplified Pain. Pain in autism can be atypical in its experience and expression. Case Reports in Psychiatry. Volume 2015
Dubois, A.; Michelon, C.; Rattaz, C.; Zabalia, M.; Baghdadli, A. Daily living pain assessment in children with autism: Exploratory study. Res. Dev. Disabil. 2017, 62, 238–246.
Andrea B. Courtemanche, William R. Black, and R. Matthew Reese (2016) The Relationship Between Pain, Self-Injury, and Other Problem Behaviors in Young Children With Autism and Other Developmental Disabilities. American Journal on Intellectual and Developmental Disabilities: May 2016, Vol. 121, No. 3, pp. 194-203.
M. D. Inglese,Pain expression in children with autism spectrumdisorder (ASD), A foundation for instrument development [Ph.D.thesis], The Graduate School of the University of Florida, 2008.
Cecile Rattaz, Amandine Duoisc, Cecile Michelon, Marine Viellardd, Francois Poinso, Amaria Baghdadli. How children with autism spectrum disorders expres pain? A comparison with devleopmentally delayed and typically developing children. PAIN, Volume 154, Issue 10, October 2013, Pages 2007-2013.
Inmaculada Riquelme, Samar M. Hatem, and Pedro Montoya. Abnormal Pressure Pain, Touch Sensitivity, Proprioception, and Manual Dexterity in Children with Autism Spectrum Disorders. Neural Plasticity. Volume 2016.
C. Mieres, V. Smallwood, and S. K. Nicholson, “Retrospective case report: evaluation of pain in a child with pervasive developmental disorder, Pediatric Physical Therapy,Vol.23,no.2,pp.194–200, 2011.
Jane Summers, Ali Shahrami, Stefanie Cali, Chantelle D’Mello, Milena Kako, Andjelka Palikucin-Reljin, Melissa Savage, Olivia Shaw and Yona Lunsky. Self-Injury in Autism Spectrum Disorder and Intellectual Disability: Exploring the Role of Reactivity to Pain and Sensory Input. Brain Sci. 2017, 7(11), 140.
Megan E Tudor, Caitlin E Walsh, Emile C Mulder, Matthew D Lerner. Pain as a predictor of sleep problems in youth with autism spectrum disorders. Autism, Vol 19, issues 3, 2015.
Adams, D.; Oliver, C. The expression and assessment of emotions and internal states in individuals with severe or profound disabilities. Clin. Psychol. Rev. 2011, 31, 293–306
Inmaculada Riquelme, Samar M. Hatem, Pedro Montoya. Reduction of Pain Sensitivity after Somatosensory Therapy in Children with Autism Spectrum Disorders. Journal of Abnormal Child Psychology. November 2018, Volume 46, Issue 8, pp 1731–1740