Parents of Children with Autism: How to Deal with Pain Management

My son is on the more extreme end of the autistic spectrum. He was first diagnosed when he was 18-months-old, and has been essentially non-verbal ever since. When I say "essentially," what I mean is he can be understood (for the most part) by people who know him and work closely with him, but the words are few and they're not always very clear. What is even more significant is that if he's not interested in giving a proper answer, he will give you any random answer he feels like giving.

When our son is in pain, it can be a bit hard to understand. I have seen him walk into a concrete wall because he wasn't paying attention, and not even blink. I have also seen him shout in pain and have tears in his eyes because he scratched himself. Finding out exactly what hurts and where he is having pain can be quite difficult. He also has no interest in any form of medication, so giving him anything for pain is a struggle at the best of times.

One of the major features of autism is stimming. This varies with each individual but in general, stimming is basically an action, or course of actions, that a person uses to bleed off excess "pressure" or "stimulus." In some, it can be flapping the arms, in others it can be verbalization, and in others it can include some degrees of self injury. Because of the differences that some autistic people have with pain tolerance, this can result in a serious injury while still seeming to not endure much actual pain.

What this all adds up to is the necessity to constantly monitor our son. We consistently check him for abnormal bruising, swelling, and/or sensitivities that may indicate he has a serious injury we may not have previously seen. We have to keep a loose track of all the scratches to make sure there is nothing new that could be getting infected. Most important though is that we and the school constantly keep an eye on him so if something does happen, we know what it was. This allows us to monitor him based on the damage each particular accident would have caused in a stereotypical child.

Intellectual/developmental disabilities can include a range of different conditions such as Down syndrome, cerebral palsy, autism, etc. and affect 1 in 7 children. Pain is an important and prevalent problem in these children and they are vulnerable to pain from both chronic conditions as well as acute pain (because of medical procedures, surgeries, etc). Children with intellectual/developmental disabilities have been found to have chronic pain in as many as 73% of cases compared to 33% in the general population. The neuro-sensory issues common in these children can make pain “look different” than how it presents in neuro-typical children and can dramatically complicate pain assessment and management.

Pain management resources for parents of children with autism

There is a great, ongoing research program called It Doesn't Have To Hurt being run by the Centre For Pediatric Pain Research. This program is working to help parents everywhere learn how best to recognize, handle, and treat their children's pain. Even non-verbal children with autism. Check out their website for helpful resources to help deal with any specific types of pain your kid may be dealing with.

Because self-reporting is often not available in children with developmental or intellectual delays, research has shown that caregivers can complete behaviour checklists that focus on vocalizations, facial expression, physiological changes to help identify relatively accurate pain levels. The Non-communicating Children’s Pain Checklist is one option that is quite good at helping to give a decent estimate. However, like all tools, it is important to remember that while it is quite accurate, the results can never be 100% guaranteed.

Autism Speaks also has a wide selection of tools that can help you with various concerns regarding autism. These tools, which even include a blood draw tool kit for both parents and professionals, can give parents extra resources for help when dealing with individual concerns affecting your child with autism.

There are a few things we've learned over the years while raising our son that are very important. You may find them helpful:

• If it should hurt, treat it like it does.
• When you think it shouldn't hurt, if your child acts like it does, treat it like it does.
• If your child is non-verbal, you will need to use every tool available to help identify and treat pain.
• Just because your child's disability is considered an intellectual disability DOES NOT mean they're not highly intelligent. Some of the smartest people in the world can be classified as having an intellectual disability. Be very careful making this mistake as these kids' intelligence can actually factor in, not only to how they react to pain, but also to how much pain they allow to be seen.
• Your ability to accurately assess their intelligence will also affect the level of trust they place in you and it will play a part into diagnosing the levels of pain they are experiencing as well.

A child with autism can be both a lot of work and an unbelievable joy, however it is important to realize that in many facets of their lives, they are just like a normal child. They do feel pain, they do feel joy, and they experience other emotions as well. However, a child with autism, as a rule, does not have the tools to properly recognize these feelings and emotions for what they are. It is our responsibility as parents to make sure they have the best tools possible to handle these feelings and emotions. We must also act as observant monitors to make sure the inability to properly process and express things like pain, does not create long-term complications for them and that any pain they should be experiencing is treated in the best and most effective way possible.