Sensory Processing Disorder

How Sensory Processing Disorder affects my life.

Quoting Psychology Today's article:

Sensory processing disorder — also known as SPD or sensory integration disorder — is a term describing a collection of challenges that occur when the senses fail to respond properly to the outside world.

Even though the challenges of SPD significantly affect the well-being of many children as well as adults, It has not been officially determined to be a "Disorder" in the DSM. For this reason, it is difficult to locate proper help or studies on the subject, or often even to be taken seriously, especially as an adult.

I decided to write this article with my first-hand experience, if it can be of some help to others experiencing this sometimes crippling feeling.

Where it starts

The true source of SPD is still widely unknown, but has been found to exist solely within many people with ADHD or on the Autism Spectrum. Scientists also believe it has a genetic element. I can remember being a child and being overwhelmed by certain sounds and smells to the point I would avoid being in those situations if possible. Of course, not realizing this was a mental disorder, it went unnoticed by everyone, sometimes including me, as I really wasn't sure what the "problem" was, let alone how to describe it.

Eventually avoidance of these issues led to the avoidance of people in general and unexplained meltdowns. It wasn't until I started playing in grade school band before I began to realize there was some kind of respite from the intensity, in the form of being in control of sound.

When it intensifies

At first, for me, it's just something that bothers me in the background. Just like most humans, there are bad sounds and bad smells that we avoid. We get out of a room filled with farts. We avoid the alarm clock, and fire alarms are meant to drive humans out of a room. We have senses for evolutionary reasons. Our brain reacts to input positively or negatively because it is supposed to.

But, when the same sound repeats at a high rate over time, my mind is not able to fully recover from it. The best example I can give is that I have a "mental wound", that keeps getting bumped into, or even re-applied, before the original wound has healed. With a physical wound, this can mean much more pain and require more recovery time. The band-aid hardly even works when someone keeps poking it with their finger. At some point, the wound could even be caused to bleed again and the process of healing would need to start over.

The invisible mental pain can, in time, result in feelings that I have a very hard time controlling, like anger and all-out panic. To the outside person, I can look like im trying to avoid something invisible to them due to extreme pain. To others, this sound sensitivity and pain does not exist. I must be crazy.

When it is disabling

When things get to this point, my entire existence is "thrown off". I cannot think. I cannot hear people speaking to me. Sometimes I cannot see because of what I hear. My executive functioning is challenged. This is where I become more disabled to onlookers. I can become very confused, even angry, for no apparent reason, and unable to gather my thoughts enough to describe, or even find a handful of words to help anyone understand what I am going through.

Another very profound difficulty is when the source of the pain is from someone I love, family, a friend, a co-worker - someone who is not intending to harm me in the slightest. I will be in such uncontrollable mental anguish I will want to act out and blame people. It feels at the time like I am being hurt by them. It is hard for me to process this complex feeling. How do you ask for help or explain this feeling to the person causing the feeling in the first place, when they may not have any control over the actions, nor have any intention to cause me pain.

It can leave me feeling very hopeless and scared, with nobody to turn to for help. I naturally tend to distance myself from who or what is the source of the pain, whether it be the location of my job, or a loved one. I understand this must feel very bad for anyone involved.

Structured senses in music

I found at a certain point that I did not suffer when I was the source of the sound/smell/sight. I also cough when I am sick like any human does. I still smell bad at times, and never notice my own smell. I also make unexpected loud noises.

In the fourth grade, I joined band as a drummer, and found that not only did the noises here not bother me, but actually calmed me significantly. I got enjoyment from hitting the snare drum loud enough to bother others. It helped me feel in control over something previously uncontrollable and unexplainable to me. Better yet, as a drummer, I was responsible for actually structuring the sounds in the entire room to a tempo and volume of my choice. I could wield drumsticks as magic wands to conjure up amazing and comfortable sounds from others in the room.

I obsessed on this magic and became incredibly proficient at drumming. I learned from the best people I could find, and practiced constantly. If I was drumming, I was in control of my sensory dysfunction. Also, I found that many drummers have "strange" behaviour, and was able to label myself a "drummer" to help others understand me. Before I was diagnosed with autism, I self diagnosed as a drummer, and it worked. Most people respond to this with "Yeah, haha, you drummers!". There were others like me, and they all loved wielding this magic.

Failures in the "real world"

As an adult, there have been many situations when I have not been able to offset the bad feelings with structured sound. There are times when I am still alone in the painful feelings and become very anxious and depressed.

My employment has been on the line, even while I am a very smart and dependable employee. I have walked out of work because someone on the other side of the room had a scented candle. I have raised a fuss at the highest levels when a loudspeaker was located above my workstation, and would beep very loud at unexpected times. I was diagnosed with a disorder recognized by the Americans with Disabilities Act in order to keep myself from getting fired due to SPD.

My friendships have been on the line, even when me and my friends have had the best times and connections together. I have quit bands and destroyed chances of making money by playing music due to SPD. I have been unable to live with certain roommates and been homeless due to these difficulties.

My relationship with my family has indeed become very strained at times. My oldest son is autistic (also has SPD), and has many "tics" which are very hard for me to ignore or process in a healthy way. I am sure he often thinks he's done something wrong, which he clearly hasn't. My lack of executive functioning often prohibits me from being calm and collected when it's most required of me.

It is an impossibly hard problem that has required much patience and understanding of those close to me in my life. Many people have distanced themselves from me, and I do not blame them for this.

There are no medications to treat SPD. I have been on countless drugs, both legal and illegal, to attempt relief. Sometimes the drugs can help with the resulting anxiety and depression, but they do not touch the source of it. Also, when on medication daily, I feel like I don't need them all the time, since I only have the bad feelings when encountering the sensory difficulties, and the "healing" period afterwords. If there are no sensory issues, I am left feeling drugged for no reason.

Moving forward in a positive direction

Through years of therapy, I have learned to recognize when my anxiety is due to SPD. I can tell when a sound starts to affect me, put a label on the sound, and recognize that the uncomfortable feelings I have, are a result of sensory processing and lack of executive functioning. I try hard to separate what I feel from the intentions of any human, and work to direct blame towards the disorder itself and remind myself I am in control.

I have found tools to help moderate the resulting bad feelings. Walking puts my brain into a pattern or rhythm, and burns off adrenaline. I often wear noise-cancelling headphones if I feel insecure about a location or situation I am in. I also have clear in-ear earplugs to avoid people asking questions or thinking they are being too loud. No one has done anything wrong. It is my own brain and nothing else. Best of all, I have a lifelong skill in playing music, where my brain can be made feel some structure in the world around me. Even listening to music creates some order where there was only disorder. My choice of career path as a software developer puts me in control of my work location.

Conclusion

To be honest, I wrote this article to help deal with a situation I'm currently having. I do not feel like it will "go away" in my lifetime. This means I need to always be more and more aware of ways to counter this difficulty as I age. I do believe the tools are available to help anyone who suffers from this disorder, but those tools may change from person to person based on their strengths and weaknesses. I hope that the disorder can receive more studies to help the well-being of children and adults alike who suffer from Sensory Processing Disorder. For me, the answers were all brought to me in the form of talk therapy as I encountered each struggle, one at a time.

I am grateful for the people who have stayed with me throughout my life, and am very sorry to those I may have hurt along the way. But our best is the best we can often do.