Autism & Illness/Injury
Recently, I had a procedure done. I’ll spare you the details, but after all was said and done, I left with a few stitches and a small wound care routine (just some Vaseline and bandages for a couple of weeks). The following day, I went to the dermatologist and had to get a test done, more pricks and prodding. Let’s just say that Kloey is not doing well, but, before you feel sorry for me, I want you to feel sorry for my mother… let me explain.
When someone with autism gets sick or injured, we do not handle it well, and I admit this as a 19-year-old who is otherwise very independent. Trust me, I wish I handled it like a “champ,” but I do not. For the last two days, I have been lying low, hyperfixating on my discomfort and the fact that I got a procedure and have an open wound. Oh, and I’ve been endlessly scrutinizing my wound care regimen: Is this a normal amount of pain? Am I doing it right? Did I use enough Vaseline? Let’s just say that Kloey is very tired, both physically and mentally.
There are three things at play here: hypersensitivity, hyperfixation, and anxiety. Most people know that children and adults are hypersensitive, or extra sensitive, to sensory stimuli like lights, noises, touch, and smell. But, sensory dysfunction does not stop with our five primary senses. Our central nervous system’s ability to interpret affects all sensory stimuli. Some commonly missed senses are the vestibular sense (movement), the proprioceptive sense (force and body-positioning), and interoception (internal sensation like needing to use the restroom or feeling “full” after eating a meal). Another forgotten stimulus is pain. People with autism have been known to experience pain uniquely. I say uniquely because it is different from neurotypical populations, but also different from one autistic to another. Some autistics are hypersensitive to pain (like I am), but others are hyposensitive. I know some autistics who have been injured badly (burned and a broken arm) but were none the wiser. In fact, they kept using their injured hand and arm as if nothing happened. Seemingly, they weren’t in any pain! This is hyposensitivity, an under-sensitivity to pain. For children and adults with hyposensitivity to pain, illness and injury can be especially dangerous. They may not notice, show, or be able to communicate illness or injury with their caregivers. This can delay proper care or worsen the initial injury or illness. It is vital that we teach hyposensitive children and adults about safety awareness using lessons, books, and social stories so that we can limit their likelihood of illness or injury. As their caregiver, it is important to watch them closely and understand deviations in their behavior which may communicate that something is wrong physiologically.
For the hypersensitive population (including myself), caregivers may notice increased behaviors as the child or adult works to communicate their pain and discomfort. For those who are verbal, the surrounding parties may hear a lot (and I mean a lot) of complaining or distress language. Hypersensitivity to pain also yields extra concerns: Is something seriously wrong, or is it their central nervous system heightening their pain? This can be a hard judgment call; I encourage you to be vigilant and work closely with your doctors through the healing process.
Additionally, not only does it stink that we are in a lot of pain, (thanks central nervous system), but our autistic brains also love to hyperfixate. For example, to try and distract my mind today (key word: try), my mom and I watched a movie together. But what happened during this movie?
I pause the TV.
Kloey: “Mom, it's really aching.”
Mom: “Ok, do you need Tylenol?”
Kloey: “Is it supposed to ache this much?” Should I add more Vaseline?”
Mom: “Kloey, you just changed the bandage; it’s okay.”
Unpause.
Pause.
Kloey: “Will you help me change my bandage tonight?”
Mom: “Yes, Kloey.”
Unpause.
Pause.
Kloey: “But, if I shower at ____ time, will it be okay?”
Mom: “Yes Klo, they said 24 hours.”
Unpause.
Pause.
Kloey: Gestures to wound. “Mom, does it still look the same? Can you see anything through the bandage?”
Mom: “Nope, you’re okay Kloey.”
Unpause.
I will spare you the rest of the conversations, but let’s just say that our 90-minute movie took two and a half hours to watch. Why can’t I stop thinking about the pain, the would care, or how it will affect my routine? Because my brain hyperfixates, and I mean seriously hyperfixates. I tried to take a nap, but that wasn’t happening. I cannot calm or distract my brain; nothing is strong enough. Here is another glimpse into my thoughts:
“Did the bandage shift?” Pictures the bandage.
“Is it perfectly aligned over the wound?” Pictures the wound.
“Did you use enough Vaseline?” Goes upstairs to look at the jar and gauge how much I used. “Am I in pain?” “Is this pain worse than before?... I think its worse.”
Hyperfixation means that whenever I am sick or injured, I am in mental turmoil just as much as physical turmoil. I truly, truly cannot stop thinking about the wound or the pain. I know it is going to be a rough few days as I heal, as it always is. I wish I could “toughen up.” I really wish pain didn’t bother me this way and that I could successfully distract myself, but I can’t. This is one of those scenarios where I have to concede to my autism: Kloey, you are just not like your friend who got stitches and then played in a volleyball game. It is okay to be affected by pain and to lay low for a bit.
What about my family, you ask? It will be a rough few days for them too. They get to hear all of my complaints and questions. Plus, what do you do when you can’t sleep? Bug your mom (sorry mom).
The third aspect is anxiety. If you have read my other blogs, you understand that anxiety in the autistic population is 10x that of the neurotypical population (people who do not have brain differences/disorders). First, my central nervous system decided to amplify the pain my brain perceives, second, my brain decided not to let me live it down, and third, the anxiety kicked in. Anxiety seems to be the same as hyperfixation and hyperfixation the same as anxiety, but there is a difference. Hyperfixation is the persistence of my thoughts and my heightened focus on those thoughts. Anxiety is the unease I feel because of the content of those thoughts. Anxiety is me doubting everything I do, feel, and see. Everything about my wound makes me nervous or seems abnormal. I lose sleep and I do not get anything done. Unfortunately for autistics, our anxious doubts become the thoughts on which we hyperfixate, starting a negative loop: as our brain tries to ease the anxiety, it asks more and more questions, and we have more and more doubts. Those questions and doubts are hyperfixated on which only causes more anxiety and then more thoughts on which to hyperfixate.... we are stuck in an endless loop of pain, hyperfixation, and anxiety.
This is what it feels like to be autistic when sick or injured. It is not fun for anyone involved, but it is a reality we face. My goal in sharing this today is to educate and provide insight for parents, friends, caregivers, teachers, and advocates. Let this explain why your child or adult with autism struggles with sickness and injury so much. Let this explain why times like these test your will, patience, and energy. But please know, there are other caregivers, parents, and loved ones who also struggle when their autistic child or adult is hurting. I encourage you to be as understanding as you can. Understanding hypersensitivity, hyperfixation, and anxiety will help you do so. Please understand that their nervous systems and brains are betraying them and challenging their thoughts and their wills too. Use pain medications (as prescribed) and support them with their preferred activities as much as you can. That being said, even their preferred activity may not be strong enough to break their hyperfixation, however, trying is better than not. Finally, for my fellow autistics, hang in there; pain is temporary. ;)
18 December, 2024
