The Complexity of Pain and the Person With Autism
By Troy Krombholz
I have had to learn, over the years, to be content with the simplicity of my cognitive abilities. So, trying to discuss the topic of pain and the autistic person successfully, for me, is like trying to take the book War and Peace and pack it into a sardine can. But I will not be afraid to endeavor to do so, because every bit of discussion on this topic is highly beneficial to say the least. I see the frequency and difficulty of this topic when I speak at conferences on autism, or spend time with my friends who have ASD. I hear from so many people who describe the challenges that autistic people have with pain. I hear their frustrations about not being understood. People ask me to describe how pain is for me as an autistic person and I hope that these few small topics will shed a little light and understanding. I am not a scientist, or a doctor, or some leading mathematician, but pain is entirely close to home for me as a person with ASD. So, lets jump in and talk about pain, because this is a complex, yet highly important subject to talk about.
Our youngest son is now eight and he has a lack of pain awareness in general, so my wife Susan and I must be like helicopter parents, 10 steps ahead, so he does not get significantly hurt. Some days I wish I could turn off the helicopter blades and take a nap on a quiet beach eating pineapples and coconuts, but the protective parental mission never turns off in my mind. Our son does not have pain awareness and it is EXTREMELY difficult to find babysitters who understand their role as a protector while we are gone. In this scenario of pain and the autistic person, our son does not understand pain, and when he is hurt, he does not often react to that pain in any way. We must see the dangerous cliff before he does so we can protect him. Our work never ceases.
On the other hand, my good friend Lea has extremely sensitive touch and pain sensitivities that often prevent her from doing much of anything in public. Her hands are super sensitive, and her eyes are easily overstimulated. Going into big “Shopping Stores” with bright lights affect her greatly. The temperatures, the cold, the hot, and many other outside stimuli overcharge her senses and she is overwhelmed to the max and that means PAIN for her as an autistic person. She is experiencing physical and emotional pain, because she wants to be around others, but it hurts to do so. I understand this complication for sure.
These two differences help demonstrate what I like to call “The Nerve Live Wire Illustration.” As you know, an electrical cord has a coating around the wire so that it is not exposed to air, water, or anything else. If that coating is not present, then that wire will interact with other surfaces that are nearby which creates an electrical reaction. This is why many electrical wires have protective coatings, to keep them secure from being touched or exposed. In this basic illustration I suggest that perhaps the “protective coating” for autistic people may not be completely preserved in some or all their nerves. That exposed wire is then reactive, even over-reactive to stimuli because it is an exposed live wire. It is like having a Hot Mic and picking up every sound for two miles, or in the other example a mic where the power is turned off and no signal is received.
“I know that pain is often subjective and that there is quite a difference between someone who lost a leg, and someone who has a hangnail. But I also know that the pain autistic people experience daily is greatly misunderstood. If pain is not understood by caregivers, medical staff, and the autistic person, who do you think suffers?”
That I believe is what makes autistic people so unique in our community, because of our vast neurological makeup differences. Perhaps Sam has more “nerves” exposed in a certain part of his neurological makeup and he reacts more to light and sound. Whereas Jane may have more “nerves” exposed in a different part of her neurological makeup so she reacts to textures and touch. As I said, I am not a doctor or scientist, I am just an adult living with autism and I have several generations of family members with ASD, so as you observe and watch the effects of autism on each different individual you learn quickly that the conversation about pain will be definite, but the focal point and understanding of that pain is quite variable.
The protective side of pain for humans is very important. It is like an early warning system in place to tell us, “Be careful there is a problem.” But for some ASD individuals, the ramifications of pain are not discovered until it’s too late. The scale of pain is highly variable with each and every autistic person and that needs to be understood. Some may have a less sensitive pain grid, while others may have an entirely exposed set of wires with sparks flying everywhere. This is why it frustrates me when I hear the stories of my autistic friends who get so easily lumped into hasty generalizations about how they react to pain. By a vast majority, I hear from many of them that they are not understood in everyday life by those they interact with. This is why I frequently suggest to Neurotypical People that they should ask the autistic person what their sensitivities are, and knowing this will help bring understanding at home, school, and the workplace.
Another aspect of pain and the autistic person that is helpful to talk about is that of fixating on pain to an extreme. I often say that as a person with ASD, my brain is like working in a control room of a nuclear power plant. Pretend that there are 100 Green Lights for reactors in the nuclear power plant. As long as all 100 lights stay green, then all is quiet on the western front. But if light number 78 turns red, then Houston we have a problem. For example, our youngest gets a hang nail and he won’t go to sleep until Daddy comes in and “does surgery” to fix the hang nail. His volume is growing very loud, and he is clearly starting to fall apart over his hangnail. Light number 78 has turned red, and there is a real problem fast. This is our same child who rarely recognizes pain, or the consequences of getting hurt, yet a hangnail keeps him awake until it is fixed. So, Daddy flies in, nabs the hangnail at lightning-fast speed, and the reactor light on #78 turns to green and buddy boy falls off to sleep. Working with individuals with ASD during a “Fixation Moment” requires gentleness and good solutions to fix the problem at hand.
Educating others about the variances of autistic pain is of utmost importance. It is also helpful for us inside of the autistic community to practice learning about pain responsivity so we can help each other. Doctors and Medical Personnel in large cities and communities are progressing in inclusive practices for those with ASD. Though it has often been my impression in smaller cities and towns that there is still a great lack of understanding. I also feel like “big chain stores” need to significantly improve their shopping environments to accommodate people with special needs in the ASD Community. If me, my kids, my friends, or anyone with ASD cannot go into a store because of the lights, the noise, the flashing, or certain decorations that cause us pain from emotional or physical stress, then that store is not inclusive to our people….yet! So please big retail stores, remember to build in a sensory time slot (even a small one) where you turn all the excess noise, lights, and vibrations off, to create an environment for the ASD community to come in and shop peacefully. Not everything can be bought or done online.
I sometimes feel bad for doctors and medical staff when they work with me. Some days I know where my pain is located, and some days I don’t. It is hard to understand and communicate what hurts so often. But if I would want medical providers to learn one thing, and one thing only, it would be this: pain can be present but it may not look like it. When many people think of ASD, they often think, Big, LOUD, and LARGE. But that simply is not always the case. Pain is personal for an autistic person and to treat that pain, you must know that person. When people watch you and learn your signals, they can help you identify the pain, deal with it, and move forward. I truly feel bad for autistic people because so often we are not understood at all when it comes to the pain we experience.
I know that pain is often subjective and that there is quite a difference between someone who lost a leg, and someone who has a hangnail. But I also know that the pain autistic people experience daily is greatly misunderstood. If pain is not understood by caregivers, medical staff, and the autistic person, who do you think suffers? Family and caregivers can help their loved ones by understanding that a warm sunny day to them might feel like a blazing furnace for some people with ASD. Neurotypical people can also take the time to consider that normal LED lights to them, may feel like intense ocular vibrations to people with ASD. And just when you think you got it figured out, the tide changes and you have to adapt again for the person you care for. That is the complexity of pain and its variabilities for the autistic person.
“Pain is very intense for people with ASD, and people close to that person should consider not ignoring that pain. Do not let real pain for an ASD individual become invisible to you because you don’t feel “that pain” is as important to you.”
Individuality is a gift to each and every human. Our DNA, hair, fingerprints, likes, dislikes, “live wires,” and “muted sensors” all compose the makeup of one person. People with ASD have such diversity in their neurological makeup that it is not easily seen on the surface, and that diversity reveals itself with pain tolerance, and self-awareness. The conversation of pain and the autistic person is far from over in modern science, and I hope that we will continue to learn from each other while we become more aware about pain and the autistic person.
We need to make progress in our understanding of pain in the ASD community. It is quite frustrating when unkind people who do not understand say, “Oh he’s just overreacting,” or “they’re just being overly dramatic.” I also believe that my friends with ASD need to take the time to practice being aware of their body as they navigate life. Learning the art of awareness helps in so many ways while you steer through the challenges that comes so quickly and easily for people with ASD. We all need to learn about coping with pain better.
Finally, I think that it is also important to learn what is causing the pain for the person with ASD. Where is it located? How intense is it? Certain cognitive levels may not always provide easy answers, but watchfulness is the key. Pain is very intense for people with ASD, and people close to that person should consider not ignoring that pain. Do not let real pain for an ASD individual become invisible to you because you don’t feel “that pain” is as important to you. Practice learning the variations of pain for people with ASD, and try to help relieve that pain however you can by being gentle along the way. Pain for the autistic person is diverse, variable, and intense. I would like to thank each of you who are trying to understand the pain that is associated with ASD and for taking the time to listen and care. Keep up the good work!
About the Author
Troy Krombholz is a published author who focuses his content on Visual Storytelling. He also writes original music as a composer, performs as a concert pianist, and is an award-winning author and photographer. Troy lectures on Medical & Special Needs and Autism Awareness and strives to see Educational Progress and Advancement for Children and Adults who live and struggle with Autism and Special Needs. Troy is married to his wife Susan and they have two sons together. In his free time Troy enjoys the outdoors with his family and speaks often on Nature Conservation and Advocacy.