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Autism and Pain: Teaching Children to Indicate When They Are in Pain

Dr. Mary Barbera

My video blog last week was on ruling out medical issues before treating problem behaviors in children with autism. So please watch last week’s blog first before this video blog on autism and pain if you haven’t done so already.

This week I’m going to answer a question I get often: “How do you teach children with autism and severe language impairments to indicate that they are in pain? And how can you teach them to tell you where the pain is coming from?

For more information on problem behaviors related to pain and the four functions of behavior – a topic closely related to this video blog – I recommend listening to the Turn Autism Around podcast episode 45.

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Indicating Pain

When Lucas was 5 years old, he had surgery to remove his tonsils. My friend, who was a pediatric nurse, warned me that about 5 days after surgery it was common for the scabs to fall off. It could be really painful. So, she told me I shouldn’t be too alarmed if Lucas woke up screaming around the fifth night.
Just as my friend predicted, on night 5 Lucas woke in the middle of the night, screaming in pain. He yelled out, “Arthur’s Tooth!” You see, a video called “Arthur’s Tooth” was one of Lucas’ favorite videos at the time. The character, Arthur, had his tooth pulled and screamed in pain when the tooth came out.  For a year or two later, if Lucas skinned his knee or banged his elbow, he would yell “Arthur’s Tooth” as he rubbed the painful body part.
When I became a BCBA, a few years after Lucas started describing all pain as “Arthur’s Tooth,” I was curious as to how to best teach children to talk about pain. I remember asking a very similar question about autism and pain to Lori Frost many years ago. Lori’s response was to make sure you label – and preferably have your child label – when he has something visible that is obviously hurting him.
In other words, when your child has a skinned knee or gets a bee sting, make a big deal out of labeling the pain for him by saying “boo-boo” or ouch. This is an important step. Eventually your child will be able to tell you that he has internal pain, such as a headache or belly pain.

Sensory Issues

When talking about autism and pain, we should also mention sensory processing. Some people with autism over or under process sensory things. They could have an aversion to bright lights or loud noises. My son Lucas wore headphones a lot because he’s bothered by loud noises, especially loud noises that come on suddenly. They could also not respond to their name, which would be an under reactive response to sound or language.

When teaching a child with autism to indicate they’re in pain, we should also be teaching them to indicate when there is a sensory issue. Some kids can’t stand being touched and  get over reactive just by the tags in clothing. Most of us wouldn’t even notice a tag, but a child with autism needs to be able to indicate if that is bothering him.

Other kids with autism may be under reactive to touch and need heavy pressure. They jump, or seek input by running into walls or being squished inside the sofa cushions.
Some kids have reactivity issues surrounding feeding as well. They might react to the sight of food, to the taste, the texture, the flavors, the temperature of the food, even the way food looks, like the color of foods, or brands. For example, the way macaroni and cheese looks with different brands. They may refuse anything that’s not their preferred brand.
What parents and professionals initially link to a response to pain may actually just be an over or under reaction to senses. For responses to pain and sensory issues, labeling body parts can really help.

Labeling Body Parts

If your child is indicating pain sensitivity, you can teach them to label what hurts or feels bad. For a non-vocal or minimally vocal child, you might try holding up a picture of a Band Aid and saying Boo Boo on my ___________  to allow the child to fill in the body part that hurts. Or try my ___________ hurts. Your child will fill in the blank with a body part by speaking or choosing a picture of the body part from a selection. Even if your child is speaking, he or she might need added visual supports to learn this concept.
I would also recommend you try to put a real Band-Aid on pictures on various body parts. Have your child fill in the blank – boo boo on the boy’s ___________ or the boy’s ___________ hurts. You could also use the same idea to teach this concept with a speech generating device and/or with sign language. I have found that receptively touching and expressively labeling body parts are usually prerequisite skills for labeling pain. So, I would also recommend working on Mr. Potato Head and other body part programs when your child is not in pain. This can help trigger the brain response when they do feel pain.

If you’re interested in hearing more about this specific topic, I encourage you to listen to my podcast episode on indicating pain for kids with autism. Also, join a free workshop by going to marybarbera.com/workshop. Learn more about autism and pain and how you can help a child or client today.

Free Workshop to Learn to Turn Autism (or Signs of Autism) Around

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