Category Archives: Sensory

Anchor to the Pain

I mentioned some sensory seeking relief on my horizon and this was it. It’s the most detailed and largest tattoo I have. It’s actually tattoo number 7 located on my right thigh. It took me a little over 2 hours in the chair to get all the work done and I only started to lose it in the last 20 minutes.  It was a lot of pain at some points, but I’m very happy with how everything has turned out.

AnchorTattoo

My new tattoo from Peek-A-Boo Tattoo in Portland, Maine.

I have a high pain threshold, which means it takes a lot of sensory stimuli for me to register something as “painful”. Some people may think it is a blessing and for a detailed tattoo like this is it. However, on a daily basis it actually poses more problems for me. It is only in the past year or so I’ve learned to actively do wellness scans on my body to make sure I’m not injured worse than I think. This includes being mindful of common issues like being aware of sprained ankles, burns, scratches, coughs, or fevers. I’ve had a bad habit of not being aware of how sick I am until things have gotten very serious.

When I get sensory overloaded, like I was after getting this tattoo, it takes me a bit of time to properly decompress. For that, the best thing is being in a safe place and taking care of basic needs like food and water. Recovery time is significantly decreased by deep pressure so my weighted blanket or hugs works really well to help by body calm down. The biggest learning curve for me over the past year is removing myself from situations when I feel myself coming close to hitting a “wall” and my sensory system getting too over stimulated. Prevention is the easier and takes less time than recovery.

Still, the tattoo was worth it.

Hyposensitivity or Did you feel that?

Hyposensitivity is when a person has difficulties processing input through the senses. This means more stimulation is needed to properly register a sensation.

Hi, my name is Brigid and my tactile sense is completely hyposensitive. This means my sense of touch is not as defined as other people’s. Yes, this is the reason why corsets are relaxing to me and deep pressure in the form of weighted blankets or crushing bear hugs are so comforting.

So when I was younger I broke my arm. Now the problem was, I didn’t realize my arm was broken.
For 3 days I didn’t know it was broken.
It was not until it had swollen up completely and my mother insisted on taking me to the hospital. See, the problem was I could not actually register the pain of a broken arm. For people like me, this can make doctor appointments very complicated because the pain scale of 1 to 10 does not really make much sense. I don’t know what a pain rating of 10 would be for the average person. I don’t even flinch when I get tattoos or piercings. See the issue?

For those who are hyposensitive, we search out sensory input. For those of us who have a hyposensitive vestibular system, we can spin around forever on those teacup rides at amusement parks and never feel like we are going to loose our lunch. It is only with the extreme sensations do we have a little more comfort in our own bodies.

One of my favorite sensory accommodations is a weighted blanket. I’m currently working to afford one because I’ve noticed they can help calm me down in record time. This summer I was under a total of 30 pounds of weighted blankets and then asked my mom to sit on my lap, it was a stressful time but it completely regulated me. Until then, I’m currently sleeping under several thick blankets and full sized pillows to get the same feeling.

Hypersensitivity or Don’t touch me!

Hypersensitivity is very common for those of us on the Autism Spectrum. It means exactly what it sounds like, we are more (hyper) sensitive to different sensory things. One thing I’ve learned from talking about my hypersensitivities, is that people who aren’t Autistic are hypersensitive about some things. My level of tolerance for sensory things, as like most people, varies depending on stresses or my health level.

Recently, I’ve become very aware of smells. Before I could hang out with people regardless of smells like cigarettes or perfumes, but now some smells are getting overwhelming. I’ve had to walk away from certain places due to lingering food smells. Picture a dimly lit room smelling of alcohol, fried foods, perfumes, leftover cigarettes, and sweat.

I’ve always had hypersensitive hearing which give me the ability to hear things from great distances away. This can be beneficial when I get lost in a crowd but when I can’t filter out all the sounds it gets too much. I need things to be at a quieter level when I’m relaxing. Even when things are normal volume levels, it can be too loud for me. Earplugs are my best friends.

For those of us who also have hypersensitivities, it can sometimes limit where we can go in the community and drain us. Sensory accommodations, such as wearing light cotton fabrics without tags for those with some tactile issues, are how we function in the world. There is no one size fits all solution as what works for one person may be so very wrong for another person. By first identifying which sense, or senses, is sensitive you can begin to discover appropraite accomidations.

I’ll discuss the other side of this coin, hyposensitivity, tomorrow.

(Don’t) Panic

I don’t have many memories of when I was younger.

They all tend to blur together in a random mess of connections. It’s interesting because sometimes memories will be triggered by a specific sense. The smell of Florida is one that always stays in my mind. My mother, father, and little brother would vacation down there in the winter. We staying with my grandfather in his retirement village. We drove down from Chicago some years and I think in there lies some of the reason why I love to travel by car. One time, I managed to back all my barbie gear and can almost remember how things looked out on the porch when everything was assembled. I can almost remember the book I was reading that dropped in the water, or it got dropped in a pool, or it somehow got wet. 

I almost remember which book.

So when I did my Midwest/Southern road trip: Escapism Is Cheaper than Therapy, I only briefly passed through Florida. I say briefly because it takes about ten hours on I10 to cross the top of the state. That was the only time I really paid for a hotel/motel. I needed to rest. That’s when the smell triggered me back to my childhood. I remember an ice cream stand in the shape of an ice cream and a mini golf course.

———————
When I was younger, my parents and doctors thought I had a heart defect. I don’t know how long, but I know I wore a electrodes attached to a bulky electrical box. Once I week we would connect this box to our telephone and it would transmit things to the doctors at the other end of the line. This was in Chicago and since my father knew so many medical people, I remember these guys had a fancy office.

It turns out it was not a defect, but panic attacks.

My panic attacks are very well defined and they have become even more refined as I get older. They still mimic some of the same characteristics, however there are new more devastating results.

When I was in College, I started experiencing some very bad health problems my freshman year. This was after have a very difficult transition to College because I was still physically recovering from my Traumatic Brain Injury and taking tons of medication to control, in part, anxiety. The worsening health problems came from Lyme disease which I had contracted but never experience a ‘target mark’ so it went undiagnosed for years. As an autoimmune disease, Lyme really can be devastating when I have a bad habit of getting myself so stressed out that I become physically ill.

I miss 279 days of my high-school career due to medical issues. I still managed to get on the honor roll a few times, much to the dismay of several people who did not take my medical issues seriously. I’d love to one day receive an apology for how I was treated by some, but it does no good to stay fully in the past. I’d like to say I’ve forgiven many of them who said horrible things to/about me, however the truth is simply I’ve forgotten about them. The only benefit to some of my TBI is I’ve been able to forget some of the bullying I’ve endured, at least most of the time. Being a survivor of many types of abuse, being treated certain ways can induce a Post-Traumatic Stress Disorder (PTSD) Panic Attack.

Part of my complete health overhaul has been getting myself in a place where I can remove extraneous anxiety from my life. I have the skills now to know how to remove myself from situations which will induce a panic attack. It’s taken me a bit of time to spot some of my triggers and it is still a work in progress.

My biggest problem lately has been my stress load. It has been getting very stressful in my life and this has compromised my health. I’ve been having non-epileptic seizures recently, which I have not had since the end of September. My lyme disease has acted up because I’ve been so stressed and this is causing me to be tired, thirsty, nauseous, not hungry, as well as increasingly difficult to swallow. My anxiety also is directly connected to my sensory system causing everything to be hyperactive. This means I can hear things from far away, see very well in virtually any condition, smell things stronger or lingering odors, tastes are stronger or sometimes taste completely different, and every spot on my body has a painful sharp needle feeling similar to when a body part has fallen asleep resulting in one limb being paralyzed for an indeterminate amount of time.

This is my life now.

This is crippling and debilitating feeling. It is on these days when the world swallows me whole that I get the most messed up feeling of optimism. I have no idea where it came from except my mother takes credit. It is on these darkest days when I know the good days will mean so much more. I know those days are filled with laughter and happiness. Those are waiting for me on the other side of this cloud.

I’ve known what it’s like to get lost in this anxiety cloud. I know all too well what toll this is as it’s one a pay every few months. Normally, it’s just a weekend break or something and I pick up the pieces and move on.

This time it’s different?

I’m not use to letting people see the vulnerable side of me. Sometimes when I show the breaking, people run away. I break loudly and ‘suddenly’ all because some straw finally broke the camel’s back. I’m pretty sure this is an autism thing, too. The world gets too loud for us and instead of people helping us quiet it down their voices get louder, too. The anxiety causes me to distance myself from some people out of….self-preservation. Some people it takes a lot out of me to interact with them. Those are the people who move and think very quickly while I’m still lost in the corner. The speed at which they move and talk actually increases my anxiety.

I remember in college interacting with people and it triggering me at times when it seemed like their words fit seamlessly together or moved too quickly. Unfortunately, I hung out with debaters, performers, and campus leaders. These are all pretty loud groups and often I would end up overwhelmed.

It’s been said multiple times by multiple people; nobody is ever neutral to me. People either enjoy my company and like me or else they find me frustrating and rude. It’s in large part because I don’t know how to interact with people in every situation and sometimes I say things which come out just ‘wrong’. I’m still actively trying to work on the interaction part, but as I’ve mentioned earlier it is a work in progress.

———————————
Last night I remembered somethings.
I was triggered back to younger days in different paces. These were memories from when I was much younger and but even more recent. The seemingly random pieces of memories, a view of an elevator or a feeling of the carpet in-between my fingers, again share a sensory trigger.
This trigger is the same panic attack long thought of as a false memory or a bad dream. Trying to convince myself it was only a story I once read, I know this feeling too well in my body.

Even as I move around to new states and grow up, this lump in my chest still feels like home.

This is living with anxiety.

Let the floods come in

There’s a snap that happens. Maybe it’s just me, but I doubt it’s only me. My snaps just ring silently under the skin until they leak out.
This is the peak when overwhelmed greets anxious.
It’s these times when I wonder how something so loud can be so silent.
These are the days where the last stone finally slips out of place and the floods race in.
————————
This snap is very familiar to me and I’ve experienced it since I was a child. It’s the snap of anxiety when it finally takes your breath away. As a former friend once said, it can reduce me to “a crying ball of useless-ness on the floor“. Yeah, I’ll forever remember those words as a warning to stay away from a person who I once considered a dear friend.

As much as I try to manage my anxiety, yesterday was the breaking point.

I’d been seeing my warning signs written on the walls, but I had been trying to ignore them. I’ve been too forgetful. I’d walk into rooms and not even know why I was there and forgetting important things. My appetite has been non-existent while leaving me with a nausea feeling. Bruises have once again randomly appeared because I have not been paying enough attention to my body and I don’t always realize something is wrong physically. And then there’s the emotions which just cap off the everything.

My overwhelm sessions don’t scare me any more because I know what they mean now.

Some people come home from a stressful day and they take a hot bath or have a drink to unwind. I don’t do that. I just keep going. I process my stress and anxiety internally so it affects me physically. This leads to the number one thing I’ve heard for my entire life and I heard it again yesterday.

This seemed to come out of no where. One minute you were fine and the next you were crying.”

THIS is anxiety on the spectrum. It’s not just that there is a difficulty separating ourselves from anxiety, we literally get stuck in an anxiety loop. It’s a real thing and terribly ironic that I had to grade an assignment on it this morning.

I’ve stopped looking at my crashes as a negative thing or as if there is something wrong with me. The jerk who thought he could make me feel worse about my own mental health issues underestimated me. I am vulnerable, but not useless. I am fragile, but not delicate. I am strong and I am also weak. Unfortunately, I need to reach my crash point when enough things aren’t working in my life. For me, this is just a sign to rebuild and make things stronger.

I’ve been slipping into ‘unhealthy’ the past few months and it’s time for a bit of a reboot. I’m not ashamed of my struggles because I know other people face them. When I posted the poetry/reality at the top of the page, 3 of the 4 people who responded with messages are on the spectrum. This type of anxiety and meltdown is something we know all too well.

Hear Ye, Hear Ye

When my brother was younger, he ignored people. This was before he had an official diagnosis so people, mainly my father, just thought he was being a brat. J would sit in the middle of a room and we would call him for dinner or tell him play time was over and he’d act as if he never heard us. When we finally did catch his attention, it was always met with “What?” It wasn’t until we saw the blood dripping down his ears one day and asked if he was hurt, the “what” revealed something else.

When some people talk, the listening party might be able to understand what the speaker is saying right away. A trait of autism is a delay in auditory processing. So it’s not like they didn’t hear you, they might still be working on how to respond or figuring out what to do with the information you said to them. Odds are, they are not ignoring you on purpose to drive you mad. That’s a waste of our time.

There’s a book my mother read when I was a child. It was called “The Cat Who Wore a Pot on Her Head” by  Jan Slepian and Ann Seidler. The story was about a little cat who wore a pot on her head because she liked the way it looked. The problem with this is she could not hear things correctly. So other animals would talk to her and she wasn’t able to understand what they were trying to communicate to her.

Illustration by Richard M Martin

As mentioned yesterday, our sense of hearing can be either a strength or a weakness. For some of us, myself included, we can hear conversations across crowded rooms. Other times, we don’t understand if someone is talking to us from two feet away because we are so focused on something we are working on. However, it is very important to address any biological reasons for a behavior. It turns out my brother with a history of ear infections was also physically unable to hear us until he had a tube put in to correct the issue. Once he fully healed and the problem remained, then we knew there was something else going on with him. Now when he doesn’t listen to us, he’s just being a 19 year old boy.

Sensory Sensitivity

Everyone in the world has sensory needs. Some people need to work in complete silence and others need to work with music. Some people can’t eat certain foods like spicy foods and others drench their food in Sriracha sauce. Some people can’t go into Walmart because it is too loud, bright, overwhelming… well that is actually most people when it comes to that specific store.

For Autistics, our sensory needs are specific to each person and can seem complicated. Unfortunately we don’t always know our sensory needs until something bad happens and we figure out, “Whoops, can’t do that.” How do Sensory needs affect us?

The affect our:

  • Taste
  • Touch
  • Smell
  • Hearing
  • Sight
  • Balance
  • Coordination

Everyone can be more aware of their own sensory needs. It takes a certain amount of self-awareness, but in any situation a person can sit back and go “What’s working for me right now?” “Is something too loud?” “Is there some smell that is overpowering and preventing me from concentrating?” “Are there too many people here?”

When we figure out what works and what does not work for us, we can better advocate for our own needs. I’ll get to advocacy a little later and explore some of the more specific sensory needs of our community in later posts.