Welcome back to “Being A Voice.” Once again, I am very sorry for the delay. This one was a bit difficult to gather my thoughts on, but I’m looking at it as an opportunity to be more aware of the aspect being talked about in this post going forward. Today, I, along with a guest contributor, my mom, will be talking about the sensory aspect of my life, how it affects me and how it can affect others.
A part of being on the spectrum can be having hyperactive senses. Sensory “input” comes through one of the 5 basic senses of the body, sight, smell, hearing, touch, and taste.
Mom: It also comes through proprioception, which is the body’s “awareness system” and often referred to as a sixth (or seventh) sense. Proprioception exists in all people and animals and is how the body knows where it is in relation to other objects and space. It helps us walk, run, ride a bike, maintain posture and balance, know how much pressure is needed in the fingers to write our name, break and egg or open a jar.
Proprioception… Well, there’s my new word for the week! Also, this is how this post is going to go. My words will be in regular font, and my mom’s words will be in italics.
Anyway, these sensory signals in the body and brain tend to be different for a person on the spectrum (hence the term neuro-diverse), so navigating through the day to day tasks in life can have unexpected challenges. This post will in no way get into the scientific, neurological explanations for all of that. But it will describe and help explain what the experience is like for someone on the spectrum.
My own areas of greatest sensitivity have been with hearing, touch, taste, and apparently, proprioception, so those are the areas we’ll talk about the most.
Proprioception
Mom: When Johnny was about age 9, I came across Sensory Integration Disorder in some online reading, and proprioception in the body. It’s now called Sensory Processing Disorder, and it explained many of his responses that I’d seen since he was a baby. Head banging, toe walking, rocking back and forth, challenges with riding a bike…the list went on. There were more practical motor difficulties in school – holding a pencil and writing for periods of time would make his hands cramp.
This I why I prefer typing to handwriting everything.
We sought out an Occupational Therapist who worked with SI (Sensory Integration). He went to OT once a week for a couple of years and responded very well to this type of therapy. She worked with the vestibular system and he worked on large motor activities – crashing into piles of foam blocks, whether it was by swinging or jumping – and the fine motor skills such as writing and grasping.
I remember when we used to go to Whataburger after those sessions… Dang it, now I want Whataburger!
Moving on. Aside from Speech Therapy at school, this was the first type of outside actual therapy Johnny received. He definitely went through a transformation at this stage. I believe to this day that there were two very important benefits.
One was what I call the practical or physical. He was benefitting from the therapy itself in the way it was intended – to provide sensory feedback to his body that it needed in a safe and therapeutic way. The second was the emotional or soul aspect. While never verbalized, I could tell that he knew on that soul level that he was being supported, he was being offered something that he needed, his challenges were being seen. During those OT sessions he was in a place designed to help him. That feeling of being supported seemed to open up his well-being and development.
Johnny was a toe-walker from age 3. As he got older, he could be prompted and reminded to walk heel to toe, but left unchecked, always reverted to toe walking.
Having a casted leg isn’t helping much in the “practice heel-to-toe walking” department.
You’ll get back there soon, Jon. Anyway, of course, early on I didn’t recognize this as a proprioceptive issue. When he was a baby, old enough to crawl, he would intentionally bang or bump his forehead onto a wall, door jamb, or the side of the bathtub.
Wait, what?!
Yep, true story. At the time I was bewildered as to why he was doing this. Sometimes he was perfectly happy when he was doing it, so it made no sense. I would hold him and his head in a way to stop him from doing it, but it would be years before I would understand what was happening in his central nervous system.
Items like weighted blankets, physical exercise, and (if tolerated) brushing of the skin can all be possible remedies for sensory integration or proprioception. Johnny loved swimming when he was younger, which was also very beneficial due to the pressure and buoyancy of the water.
Swimming… Quite the luxury for me to have lost this summer due to my overcompetitive spirit.
He did learn to ride a bike, but it was always a bit on the shaky side. For someone with balance issues, or who struggles to sense their body in relation to the earth or space around them, being on a bike can have a constant sensation of feeling like they’re about to fall. Instead of hitting the balance that the forward momentum of the bike provides, and gliding smoothly along, it’s a back-and-forth second-by-second negotiation in the brain to prevent falling. If it can be learned and mastered, it can be very helpful and enjoyable to someone on the spectrum.
Too bad I could never buck up and use the one I had in College Station. I know a lot of the roads had bike lanes, but still… So. Much. Traffic! Anyway, let’s move on.
Hearing and Sound
When I think of sounds that immediately set me on edge, the first one that comes to mind is the sound of sweeping, or cardboard boxes sliding across concrete floors. Like nails on a chalkboard, these types of sounds set me on edge. Loud and sudden noises can also be difficult to handle, like crashing cymbals. I had a hard time playing in band due to this and did not like the cymbals at the… “church” I went to as a child.
I have two types of headphones and wear them frequently. One pair is a regular wireless pair that I use for listening to music that I enjoy. This helps keep me focused on something that I enjoy. I also use noise-cancelling headphones for loud places or on long car rides. In places where there are multiple conversations and noises, it can be difficult for me to sort through the sounds and pay attention and not be completely distracted. Headphones help “turn down the volume” on the things that I don’t need to be concerned with so I can stay more focused.
There are times when I want to hear whatever original compositions I’ve made in my head. The noise cancellation headphones don’t quite help with that, so these times require more… seclusion, for lack of a better word, and silence.
The upside of sensitive hearing is in music. I can discern and name specific musical notes when I hear them and hear “perfect pitch” and I am able to recognize a song before people start singing it, provided some similar instruments and notes are used. This helped with my singing voice in musical theatre and choir in middle school, and I still rely on this when practicing guitar.
I’m not sure if I’ve mentioned this in any of my previous posts, but while we’re on the subject of music, I suppose now is a good time. Whenever I’m listening to music, whether it’s actual music through headphones or imaginary compositions, I rock back and forth. I used to do it no matter where I was from age 2 to when I started sophomore year, but after my freshman year of high school (yeah, that year), I became more conscientious and reduced to doing it in private, or around family. Nowadays, I pretty much only do it in private. Whenever I rock, I try my best to rock in sync with the tempo of the music, like a human metronome.
Touch and Texture
My skin tends to be very sensitive to heat, cold, textures and most things that touch it. During my first trip to the beach in Port Aransas, I had real issues with the sand touching my skin. It felt scratchy and I kept trying to get it off of my skin, which is of course impossible when you’re on the beach. My mom tried to get me accustomed to it by what she calls “immersion.” We sat in the sand at the edge of the water and she drizzled wet sand over my legs and arms to feel the softness and grittiness of it at the same time to help me see and feel that it wasn’t so bad.
Throughout school I could not tolerate dry skin on my hands touching paper. I kept hand lotion in my desk or backpack and used it regularly to not be aggravated by that sensation. I’ve always been quite picky about the shirts I wear – specifically the fabric and sleeves. The sleeves have to fit around my underarms, otherwise it’s uncomfortable. I also have to have a soft cotton shirt under any woven fabric shirt. There are also textures that I like to touch and have used as sensory tools. I’m definitely a “fidgeter.”
Taste (and associated Smell)
I was a very picky eater from early on, and still am to a certain extent. Having said that, I’ve added quite a bit more to my diet in recent years but still have my food rules. Whenever things that didn’t look too good that I was skeptical about trying were the only foods available, it was instant frustration, whining, and pleas to go home that fell on deaf ears.
Mom: From age 2, he knew the difference between name brand foods (like Oreos or Cheerios) and would not eat the generic or store brands of similar items.
Really? Dang, I didn’t know I was that bad! Anyway, certain foods that I didn’t like the smell or texture of gave me a gag reflex. Smell and taste is very connected, so like most people, if I didn’t like the smell, I didn’t even try the food. I’m picky about the texture of food. Fruits and vegetables can be really challenging due to this. I’ve learned to eat apples (sliced and with peanut butter dip) and grapes. I have also learned to eat carrots and small amounts of salad as long as ranch dressing is available. I tend to like a lot of “white” foods, which are also usually more processed foods that are more bland in flavor like breads, crackers, cake and ice cream (I’m a much bigger fan of chocolate ice cream than vanilla, by the way). I have always been a fan of boneless fried chicken and pizza as well, and I’ll eat a variety of chicken and beef. Nowadays, I’ve discovered that I really like boneless fried chicken tossed in honey barbeque sauce. Or dipped in ranch, or Canes sauce, or Chick-fil-A sauce.
Mom: Like many on the spectrum, Johnny prefers a limited diet that’s not very green!
Hey, I’ll have them know that I tried oven-baked broccoli once. It was terrible! I do like celery, though.
Anyway, he experiences difficulty digesting a lot of dairy and wheat. About 6 years ago we began experimenting with a gluten free/casein free diet. Last fall, his blood tests also showed sensitivities to these foods. While he doesn’t avoid them 100% of the time, he gets along much better with very limited quantities of dairy and gluten. We’ve tried a number of approaches to expand his diet and include more fruit and vegetables. For us, small increments has worked better than a more radical approach. His diet is not for lack of natural, whole food in the house that is available at any time – he’s just a picky, picky eater.
Sight
I personally do not have many vision sensitivities, except for extremely bright lights, which is likely the same for anyone. I sometimes feel like I need a lot of bright colors to keep my attention; this is one of my favorite aspects of video games, especially the Mario series (and the music – nothing quite as classic as the Rainbow Road theme, am I right?). Aside from that, I don’t experience anything I’d label as particularly “unique.”
Summary
Whenever I experience unpleasant sensory inputs, my nerves and anxiety levels are shot. I really can’t think of anything other than escaping from the aggravation, so something as simple as wearing a shirt I don’t like can be incredibly distracting. It’s hard for me to say which sensory area is the most difficult to deal with. This is partially because being 25, I select my own clothes, decide what food I’m going to eat, and can manage to avoid many situations that I know will be difficult. I do love to get together with friends, so being able to participate sometimes means not being able to have things just like you want them.
The following are some of the ways I cope with sensory issues and severe input sabotage:
- Taking deep breaths. I know, it’s a total cliché, but it really does work most of the time.
- Whenever I’m around others, I do my best to get over it, and focus on making good impressions and having good conversation and fellowship with them.
- Trying to think about something else, or somehow, enable something more peaceful and calm to enter my mind. For me, in the past five years, worship music has been a great source of comfort, and for longer than that, video game music. So long as it isn’t the music from the level that I need to take a break from, or the music doesn’t remind me of whatever unpleasant sensory input I’m dealing with.
Mom: The opportunities to participate socially have definitely been a big motivator for Johnny to try new things and roll with whatever is happening. It is not always easy for him, but what I’ve witnessed is the happiness of connection with others overshadows some of the sensory discomforts.
Prior to learning what I have about sensory integration and autism, my tendencies were to mostly try to “mainstream” him at home and in the community. What I mean by this is that I wanted him to learn to “get over” many of his sensitivities – learn to cope with or manage them. I could only see the surface – not what he was experiencing in his body and brain. He has always been high functioning and verbal, so he would try to do what was asked. The more I understood more about autism and the senses, the more I knew how important it was to work in collaboration with the sensory factors and not against them.
Knowing what I know now, I believe there’s a balance to strike between appropriate exposure to the world as we know it and also providing a safe and comfortable environment for a neuro-diverse person to enjoy and thrive in. This “exposure” can be uncomfortable (as is learning new things) but should not be traumatic. Had Johnny (and I) not been willing to push himself to some discomfort, he wouldn’t have had summer camps and social outings, which brought him some of his favorite experiences (and his faith).
*Sigh* I miss those camps.
Providing a comfortable environment or accommodations for sensory issues is also important. The hypersensitivities create a stress response in the body and brain, as Johnny noted above. Any prolonged stress condition can begin to have negative effects on the body and psyche. Recognizing and honoring what someone on the spectrum needs to navigate our physical, sensory world, is simply a beautiful way of acknowledging their uniqueness and wholeness as a human.
Well said, mom. Thank you for your contribution to this post and thank you all for reading. Next time, I will be taking a break from this series to talk about something I believe needs all our attention: bullying. As parents, students and teachers are about to start, or have already started a new school year, I believe it is the right time to address the issue.
If you found this helpful and believe it will help others, please share this however you are able. I’ll see y’all next time!
Puzzling Life 