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children with developmental disabilities were excluded from pain research, but this past month a new (as yet unpublished) study showed conclusively that people with autism exhibit abnormal brain responses when a painfully hot object is placed against their skin.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.
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I have a 14 -year old girl who is unable to tell us where she hurts or describe what the pain is like. When she hurts she just begins to lash out at us and others. Her pediatrician suggested some OT and Speech therapies – which she is now doing; however, I do not believe that this is helping. We need to know where the pain is coming from. Does anyone know of a physician in the Atlanta area that we should speak with?
Joy, what your daughter needs to work on is interoceptive awareness which will help her identify where her pain is coming from. https://autismawarenesscentre.com/interoception-and-autism-body-awareness-challenges-for-those-with-asd/ There is a lot of information available on this. We also have a one hour webinar on how to teach interoceptive awareness – https://autismawarenesscentre.com/shop/webinar/past-webinars/interoception-the-eighth-sense/
Hi Maureen , I definitely relate to this article my son is in hospital at the minute as he has been unwell vomiting , not eating or sleeping completely unlike him I’m just wondering how we as parents differentiate between physically unwell and mentally in my opinion my son has autism he is 8 years old and he didnt just wake up the other day mentally I’ll like this ?
do you have a book you can recommend? I am a school nurse for autistic children and i find very little literature on how to medically approach an autistic child
Dear Marlis,
Here are some links to information for nurses working with patients with ASD- https://www.ckn.org.au/content/nurses-guide-interacting-people-autism-spectrum , https://www.nursingcenter.com/ce_articleprint?an=00152258-202003000-00006 , https://www.ajc.com/lifestyles/health/world-autism-month-how-nurses-can-support-patients-with-asd/HfpdB0fdiurv5rRrqiNhGJ/ , https://www.carautismroadmap.org/the-role-of-the-school-nurse/ , https://www.ucalgary.ca/news/nursing-student-shares-her-experiences-working-child-severe-regressive-autism https://healthykidsmo.org/conferences/2017-Presentations/Autism-Parent-and-School-Nurse.pdf https://www.schoolnurse.com/public/Autism-Spectrum-Disorder.cfm
The things you will want to understand most are sensory issues, interoceptive awareness, communication difficulties, comorbid conditions such as anxiety, OCD, depression, and the need for predictability. If these links provided don’t give you enough information, please let me know.
My son had walking pneumonia possibly for weeks. None of us including the school nurse caught it. It wasn’t until his temp spiked suddenly to 106 that we sought medical attention. He’s on an antibiotic now. That stuff’s life-threatening for people who can’t communicate when they don’t feel right. Going forward I’ll be mindful of this!
My daughter once had an ear infection that I never even knew she had until it burst and was running out her ear. She didn’t cry, complain – nothing. Changes can be so subtle. We have to be observant and vigilant. I check my two children who are now adults all the time as they don’t even complain about a painful ingrown toenail.
As an autistic person myself, I have this problem (I just learned the word interoception today, but I’ve been working on different aspects of it my whole life) and while I speak as well as anyone and am therefore theoretically capable of talking about those signals, and was even aware of at least part of my problem with interoception for years, I still struggle to remain aware of those signals from my body.
What’s important for me to say is that I do FEEL those sensations, but I don’t pay any mind to them. They’re background sensation like the ground under my feet or my underwear touching my skin, and not “a message from my body” so I’ll become aware that I’ve been getting a signal for hours, but at the same I’ll only suddenly feel very bad when before it was barely noticeable.
Very late today I noticed my classwork was too hard, and that was what made me mentally check out my body, notice that I felt lousy, then check through everything I did today for a cause. I realized I hadn’t drank water since the day before, and that’s why my stomach was cramping and I had a headache and fatigue, all of which I had entirely ignored until my difficulty with my classwork prompted me to check in with those sensations.
That’s a method I taught myself, because since I’m verbal and seen as intelligent, nobody knew I didn’t have those skills, and that was the cause of my “random outbursts” and “strange forgetfulness”
It’s important to take care of nonverbal and semiverbal autistics of course, but for those of us who can communicate, being led through an inventory of physical sensations to determine if/why we are upset or feeling bad could go a long way to helping us care for ourselves. It just takes practice to deduce what problem causes what sensation, and to remember what problems should prompt us to check in and figure it out. Encouraging your child to tell you when they feel something unwelcome (“my head/belly feels different” maybe) and working through possible causes with them could be a good start. I find that I’m much less angry and more healthy now that I can effectively problem-solve for myself.
Could you tell me please how did you help him to know his pain himself?
You need to work on interoceptive awareness. https://autismawarenesscentre.com/what-is-interoception-and-how-does-it-impact-autism/ There is also a book on this topic which I recommend that you read to learn how to teach this – https://autismawarenesscentre.com/shop/sensory-integration/interoception-the-eighth-sensory-system/
Hi Maureen, yet another great article thanks. Is this one we could translate for the Knowledge Base please?
Yes, Jennifer – please do use it for the Knowledge Base. I am always honoured when you choose to share something I wrote.
This is amazing Maureen. Connor is exactly like this. I think I sometimes insult other parents by saying this, but ” I believe that my years of working with animals on farms and our pets at home, enabled my husband and I to read Connor’s body language better. Being aware of non verbal signs is key.
And yet we are so afraid to use the techniques we use with our pets with our own children. It is not degrading – it makes sense. Nonverbal communication accounts for 90% of communication. How do we know what babies like or want? Check out the great teaching book Body Talk or Teaching Your Child the Language of Social Success – these are books that explore body language and nonverbal communication. If you come to Day 2 of the Halifax conference on April 9th, you’ll learn all about interoception which ties into all of this. Very eye-opening! Thank you for taking the time to comment.
Maureen, Director, Autism Awareness Centre Inc.