How do you know your child is in pain?

My youngest son on the autism spectrum has a love of jumping off our kitchen table thinking he is Spiderman. Twice now he has landed on his heel and damaged his foot.

Our problem is he never screams or makes a fuss as he has a very high pain threshold.

Without careful observation it could be afterwards we notice signs of injury.

It’s only being the parents of boys with autism that we have found out over the years that some people with autism have insensitivity to pain. As no child with autism is ever the same, it's also true that many others have a very low pain threshold.

A high pain threshold can be common when your child has autism or, in fact, any special need. And it can be both a blessing and a curse.

For us, this week it was both. The curse was he eventually started limping and not putting any pressure on his heel. The blessing was no real damage was done and we didn’t have to endure another journey to Accident and Emergency in a Covid environment. With rest and plenty of TLC, he is now on the mend and playing Spiderman again.

However, for so many parents it can be difficult to tell if their children are in pain, this is because Autism affects the way that our kids perceive practically anything, from sights and sounds to emotions. 

This also impacts upon the way our children perceive pain. Not only does it impact how much they perceive pain or how they may express that pain, but it also plays a role in why some things are super painful to us that might not be to neurotypicals and vice versa.

The core ways in which ASD affects the way we experience pain can be categorized into the following:

  • Hypersensitivity: Differences that lead to experiencing more pain than usual
  • Insensitivity: Differences that lead to experiencing less pain than usual
  • Social response: Differences that lead to unexpected reactions to pain despite similar pain perception.
Over the years, you have most likely become familiar with the term hypersensitivity in broad terms, such as, sensory-processing differences (loud sounds, bright lights, etc.).

I’d like to share with you some other, perhaps lesser-known ways that autistic hypersensitivity to pain  may show up in your daily life.

Here are some of the most common but lesser-known ways that autism causes our children to be hypersensitive.

It is common for autistic people to be sensitive to temperature to the point of it causing discomfort or even physical illness. Many complain of being intolerant to heat, where the person will not only be uncomfortable, but even vomiting, fainting, and feeling burning sensations on their skin. Though this seems to be the most common case, there are plenty of autistic people who report being equally intolerant to cold. Those who are sensitive to heat also tend to tolerate cold temperatures better than usual and vice versa. In other words, this temperature sensitivity generally applies to either heat or cold, but not both.

Chronic Pain 

If you feel like your child complains about aches and pains more than other children, you might not be far off the mark in your thinking. It's proven that autistic people experience more chronic pain than neurotypicals for many reasons. These range  from genetic comorbid conditions to lesser understood aspects of autistic neurology.

This can lead to autistic children reporting more instances of things like joint pain, back pain, and stiffness.

Painful and Difficult sleep 

Bear with me on this one and you might find it applies to your child.  Painful sleep revolves around the feelings of discomfort that likely keep them awake at night, leading to insomnia and poor sleep quality. In one survey, more than 90% of mothers of autistic children reported that they displayed feelings of pain such as moaning, grimacing, nightmares, and breathing irregularities while they slept. This lack of sleep has the obvious knock on effects as well further sensitivity to pain in their  waking lives.

So, what can you do if your child has a high pain threshold? Well the three pieces of advice I would give are:

Observe them closely: The human body has ways to express its discomfort that we can see.

Are they sweating? Are they shivering? Yawning?

Keep a careful eye on your child to see how they are behaving.

Sometimes the body will “show” what it needs, even if the person can’t tell you.  

Pay attention to unusual behaviour: Is your 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 up 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.

Use Visual Pictures: Use pictures such as parts of the body and happy and sad faces. Encourage them to point to how they are feeling and which area hurts. 

If all else fails, and you have any doubt what so ever, don't hesitate to contact your Doctor or go straight to A and E.