Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I am going to be talking about my experiences with sensory processing problems as another installment in the “My Diagnosis” Series. In my last installment in this series, I talked about my auditory processing disorder specifically. However, there are other ways that sensory processing effects my life.
I think that it’s important to start this discussion by covering some basics about Sensory Processing Disorder. The first thing to note is that this is not a formal diagnosis in the DSM5. However, it is a useful term to use as an umbrella to cover all the diagnoses that do exist such as misophonia and auditory processing disorder. It is also worth noting that sensory processing problems are a part of the diagnostic criteria for autism. While they are not a part of the diagnostic criteria for ADHD, it is recognized that there is a correlation between ADHD and sensory processing problems.
It is also important to talk about our senses a little bit. Most people think about humans as having five sense: taste, touch, hearing, smell and sight. But the first thing to note on this particular topic is that science is still debating it. Yeah, that’s right. However, in addition to the five already listed, there are four others that are well established and generally agreed upon in the neurological community. Those are:
- Thermoception – the sense of heat (there is some debate that the sense of cold may be a separate sense)
- Nociception – the perception of pain
- Equilibrioception – the perception of balance
- Proprioception – the perception of body awareness (close your eyes and touch your nose. Got it first time? That’s proprioception in action). Also described as our awareness of space.
There is also a lot of acceptance for interoception or the awareness of what is happening with in our bodies. However, what should be included within this is still being debated. Most include hunger, thirst, the need for sleep and the need to excrete. But should it include things like heart rate, blood pressure, oxygen levels and the like? Because we do feel different when these things change. But those pieces are still being studied and debated.
The important thing to understand is that our senses are about having an awareness about both our bodies and the environment. When you have a sensory processing disorder, there is a disruption that alters that awareness of either your body or your environment. This is not due to a change in the receptors, they are receiving things in the normal fashion. It is due to changes in the way that the brain processes the information that the receptors are sending. This disruption can lead to either a lack of awareness or an increased awareness of our bodies or environment. For most people, there is a mixture of the two.
When there is a disruption in the processing there often becomes a behavioral response of either avoidance or seeking. When the disruption causes us to be more aware of things, we often avoid that stimulus because it is felt to be overwhelming. When the disruption causes us to be less aware of things, we often seek that stimulus because it is felt to be lacking. All humans are sensory creatures that require sensory input for normal function. When we are not receiving that sensory input it is normal to seek it out. This is why humans like having lights and music in their homes.
Well, those are the basic concepts behind the human senses and having sensory processing disorder. There is plenty more to talk about but in this post, I want to talk about my own experiences. Maybe I can talk about sensory processing disorder in more depth in a future post. For me this is another area of grey. There is no way to know if my sensory issues are being caused by my autism or my ADHD or if they are things that are independent issues. In the end, I feel that it really doesn’t matter.
I’m the pretty classic neurodivergent person when it comes to foods. There are things that I love the textures of and could eat every day like popcorn and celery. Then there are foods that I cannot tolerate the textures of that I’m not sure I could force myself to eat even if I was starving, like bananas. But there is also this strange flux too where I will want something a lot for days and then suddenly, often in the middle of eating it, I suddenly can’t. My brain just decides that this isn’t a desired texture or taste anymore and I’m done with that food now. This means that I struggle with eating a good variety of foods. My brain prefers certain foods that are familiar and have a nice texture. And when it is a texture that my body doesn’t like, it is a physical reaction. I gag. I have a difficult time swallowing it and if I manage to I will then feel a strong urge to vomit it up. It is a full body rejection of the food. Just an all kinds of “nope.”
There are some fabrics that I cannot wear because they feel awful. Denim and corduroy are so awful that I never want to touch either. It is physically uncomfortable to have these fabrics on my person. But there are other fabrics that I could touch all day long because they are soothing. Blizzard fleece, velvet and flannels are wonderful fabrics. Then there is cotton which is a strange neutral fabric that I am capable of ignoring. One of the few fabrics that I can wear and not think about all day long. Some polycottons can fall into this category too.
Other factors come into play with clothing. How are the seams made? Where do the seams touch me and do they rub against me? Does the shirt have a tag? There are so many factors to finding clothing that is compatible and actually comfortable. This is why you will see that I have numerous copies of the same thing in my wardrobe. Once I find something that is comfortable, I will go and buy I bunch of copies of that so that I can be comfortable more. Because I have enough problems with focus in my life that I don’t need to have my clothing constantly distracting me.
I have misophonia. There are sounds that cause me physical pain. High pitched, metallic sounds feel like someone is stabbing me in the ear. Sometimes when I hear people’s mouth noises that they make when chewing or swallowing I have a physical revulsion response. It makes me feel like I might vomit. Most noises don’t fall into such extreme categories for me, but there are many sounds that I really don’t like hearing and have a physical response to. It’s not like hearing music and saying “this is not my thing.” It is more of a raw, physical response like itching or being burned. Something that is physically unpleasant.
Most of my sensory seeking comes in the form of wanting deep pressure stimulation. Give me that bear hug (if you’re a trusted person). Weighted blankets are gold. Compression garments are so comforting. This is something that my body rarely gets enough of. As a child, this meant that I was often leaning against things or running into things to get that quick hit of deep pressure. Even as an adult, I will lean against a wall or counter if it is an option just so I can feel that solid object pressing against me. This makes me feel safe. Makes me feel like I am grounded and gives me a better sense of where I am in the environment.
Music is a constant companion. I love techno and heavy metal. When I can turn it up loud and feel the music in my chest is when the music is the best. But almost every kind of music has a place in my life depending on how I am feeling. But having that constant auditory input gives my brain a background noise that somehow helps settle and quiet the constant chaos that is inside my head. It’s like turning on the music makes everything in my brain pause so it can listen. Because of this, music helps me focus my thoughts and helps me process through my emotions.
Not once in my life have I felt the physical sensation of being hungry. People talk about an aching or emptiness or cramping that they get in their stomachs when they need food. Nope. Never happens for me. I know I need to eat when I start feeling the symptoms of a low blood sugar. If left to my own devices, I can literally go days without eating and without noticing it. This is why I eat in a scheduled way and eat a prescribed amount of calories. It is hard to say if this one is because of the gastroparesis or because of interoception processing issues.
With hyperfocus comes many issues with interoception. I can easily forget to eat, drink, go to the bathroom or even forget that I need to sleep. When I am in the zone I can just keep working on something for hours and fall into that so completely that literally everything else ceases to exist, even my own body. Then when the hyperfocus ends I’m hit with all my body’s needs like a ton of bricks.
I have a lot of issues with proprioception which might be because of the EDS rather then the ADHD or autism. But I am always walking into doorways, hitting my elbows on things, smacking my teeth with eating utensils and the list goes on. I literally loose track of myself in space. I feel like deep pressure stimulation helps with this. I don’t know why, but I do feel more connected to the world and feel I have a better sense of my place in it when I wear compression garments. I am also always touching the walls and furniture around me so that I can better gauge where they are.
Thermoregulation is a major problem for me, but this could be because of my POTS. But I think it is also partly because I am not usually aware of my body’s temperature until it gets extreme. It is not uncommon for someone to touch me and comment that I feel cold when I have not been aware that I was feeling cold. When they touch me with their warm hands I become aware of it though. I am even less aware of being over warm and can easily get into the world of being over heated before becoming aware of it.
As far as nociception goes, I’m not sure. I know I have a high pain threshold or high pain tolerance. It makes me wonder if it is because I am simply not aware of my pain the way that other people are. But I have had serious things going on with my body and only had minimal or no pain with it. So, I don’t know with this one. Pain is understudied so it is difficult to say what is and isn’t within the normal threshold. One thing that is clear is that there is a lot of variation in that way that people experience the same types of pain. So, it’s complicated.
I’m sure that there is more going on with my sensory stuff that I am just not thinking about at the moment. But what all of this means is that I’m a very sensory based creature. What my environment is doing has a major impact on my body and my sense of well being. Because of this, there are places that I have a difficult time tolerating. There are other places that I love being and cannot get enough of. It is difficult for me to explain why one place falls into one category and another place falls into the other. I am not always aware of what is being triggered. This is especially true if there is a lot of things being triggered all at once or if it is just a busy, highly stimulating environment. Because even when the stimulation is pleasant, it can take a lot of spoons for me to process a heavy dose of stimulation.
Thanks for coming and spending some time with me. I hope that you all find peace and wellness. Until we talk again, you take care of yourselves!