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After the events I wrote about in my last post, I found myself with a lot of questions. Why had it taken so long for me to recognize the severity of my own sensory overload? Shouldn’t decades of living with my own particular neurology have given me a better gauge of my own limits? I also found myself wondering about my own past.
If I was this vulnerable at my current age…what must situations like this have been like when I was younger, without the coping skills I’ve since developed? When it comes to that last question, I have some clues. Of course, there’s always memory…but I don’t have to rely on only that. You see, while I haven’t always written for public consumption, I’ve always been a writer. My drive to write started very early.
It began in the first grade. In the spring of that school year, my teacher implemented a new project. Each of us were given a journal, and asked to write in it for a certain amount of time several days a week. She would then read, correct, and write a little note in response to what we wrote. In a funny way, it was much like what I do here, except with a vastly smaller audience, and with much more primitive technology.
Because my dad, a proud father, saved these journals, I have a record of my thoughts and feelings during that time, in my own words. Reading this record can be, at times, profound. In it, I can witness the moment my love of writing took root, when writing went from work, to being something I loved.
Reading these pages teaches me a lot about the idiosyncratic child I once was. There are entries that read like public service announcements: “Today at my apartment the water will be turned off from 1:00 PM to 3 PM.” They are followed by incongruent, quirky little slices of life: “Saturday I was walking up the stairs in my house and I fell in the laundry basket. I had a hard time getting out.”
In the text, there are a number of trends that are noticeable. My many loves – hot dogs, stickers, my teacher, my pets – make frequent appearances. Even back then, the root of my current writing style is evident. But there is one trend that I missed completely – until someone else pointed it out to me. That is my utter hatred of sound.
It’s peppered throughout the pages. When the class practiced square dancing, preparing for an open house, my only comments are direct and sound-focused: “We just square danced. Mrs. M is here. You bother when you call out.” Other times, the noise of the classroom gets to me. “J. is reading to himself out loud. It bothers me. Stop him.”
Two months in, my frustration escalates – my exasperation evident in the way replicate in writing the stutter I develop under stress. “K. is talking. It bothers me. Stop the talkers. S. just dropped his pencil. I filled a page already. Isn’t that great! I am disturbed by….by…..by…by talkers. I hate it! I hate it! I hate it! Please try to stop them.”
Throughout, the entries continue in a similar vein: “K. read out loud what he wrote. Stop him! I like you a lot. Bye Bye.” Even as I end the book, my crusade continues: “I am almost done with the book. Stop the talkers!” My distaste for sound is evident and constant.
After the library meltdown, I spend quite a bit of time trying to understand my reaction. During that time, I found my thoughts going back to the words captured in these journal pages. Why? As I said earlier, I was at a loss to understand why I didn’t recognize my limits earlier. When I sat trying to understand this, tried to think back to other times when I might have felt similarly.
I was immediately presented with a memory, from this same period of time. Me, sitting at my desk, gripping the edges of the desk, white-knuckled. Silently repeating to myself the same three words, “One more minute. One more minute. One more minute.” Welling up in my chest, the same overwhelming wave of emotion and stress.
This memory is the dominant memory of this time in my life, and brings with it some strong emotions. During this time, I had developed some difficult behaviors that upset my teacher. So much so that she eventually accused my parents of abuse.
I loved my teacher, and didn’t want to upset her, so I tried to suppress these behaviors. After the abuse accusation was made, the stakes were even higher. I did the only thing I knew how… I played the clock game, over and over. I would watch the clock, squirming in my chair, feeling as if the stress and pain was going to burst through my chest like something out of horror movie.
When the minute was up, I’d start over again – and I would keep doing this, until the discomfort finally overwhelmed me, and I could no longer suppress the urge to act to relieve the pain. I still remember the utter shame and self-hatred I would feel in those moments…acutely aware of my differences from my peers.
Why was it that I felt compelled to do such strange things – and upset the people I loved? Why is it that I seemed to struggle, when the rest of classmates did not? What was wrong with me, I’d wonder – and why did they not see how hard I tried to be “normal”?
Gradually, I got good at the clock game. I could go for longer and longer periods of time. Eventually, the behavior was almost completely eliminated. Some would have looked at this as a win, as I am sure my teacher did. But I don’t.
The problem was that although the behavior was eliminated, the pain and discomfort that caused it was not. I had simply learned how to ignore and suppress it. And, well, while it may have been effective in the short term, it was devastating in the long term.
Suppression of acute pain and discomfort is not a sustainable coping mechanism. Pain will find a way to express itself. Before too long, I was experiencing massive meltdowns that left me and my family at a loss. The stress would build, then overcome me hours later, at home with my parents. I’d rage until I wore myself out and collapsed in exhaustion, hating myself for my own lack of control.
Unfortunately, because the focus was on behaviors, no-one ever made the connection between the sensory stressors in the environment, and the pain that they created for me. No-one seemed to even be aware that the pain even existed. So I was left to handle it alone – and the skill I’d gained at suppression was at exact opposition to this goal.
You can’t effectively respond to something, if you aren’t aware that it exists. One day, in Junior High, I realized that I was completely numb. I had no idea what my own thoughts or feelings were on anything. Those thoughts and feelings existed, but I’d become so practiced at ignoring them, I didn’t know they were there.
It was only after taking up disciplines like meditation, yoga, and visualization that I began to become self-aware again. But, as my experience at the library shows, all these years later the legacy of suppression still stands. For all the work I’ve done to reconnect, I still find pockets of myself that have remained hidden, which pop up at the worst times. Sometimes, dangerous times.
When I think about that, I get angry. I think about how much further along I’d be, if I’d been taught to honor my own neurology. If I’d been taught how to recognize my own feelings and discomfort before a situation escalated, and been helped to develop effective tactics to cope in a socially acceptable way.
I wonder what would have happened if, instead of focusing on eliminating my behavior, or wasting time on “whodunnits,” the adults around me had spent the time to look for the real cause. The cause, which in some cases, was right there in black and white. What would it have taken to connect the dots?
If they had been able to do so, how would it have changed my school experience? How much more would I have learned, if I could have focused on my work, rather than sensory related stress? How would it have affected my relationships with my peers, and their experiences in the classroom?
My demanding manner likely did not endear me to my classmates. I was a child in pain, and I was doing whatever I could to make that pain stop. I didn’t have the maturity or experience to come up other alternatives. Had those around me been able to the make the connection, they could have coached me and helped me to find more appropriate solutions.
But then, without a diagnosis, how would they have known? Reading my own words through adult eyes, I see odd gaps in my communication abilities. While my writing about other things seems to flow, my ability to write about negative emotions seems very basic.
The word “bother” seems a lukewarm word for the level of distress I was experiencing. Yet, this appears to be the only vocabulary I had at my disposal, and I don’t vary from it. Nuance is lost in the translation. Did this unexpected unevenness in skills serve to hide the extent of my distress? My teacher’s comments seem to confirm this.
In most cases, she doesn’t respond to my concerns at all. Once it begins to escalate, she offers to rearrange our desks but doesn’t assign it a very high priority. Two weeks later, it was still not done. When I express discomfort again, she writes: “I will move K.’s desk. You remind me, Lynne.” It’s unclear if she ever followed through.
Sensory sensitivity is pain, and it needs to be treated as such. If a child is cut and bleeding, and stops crying, you don’t assume that this means the cut doesn’t need tending. The same is true with sensory issues. Just because a child isn’t expressing pain, it doesn’t mean that they don’t feel it.
Read part one of this series, The Uncounted Costs of Sensory Sensitivity.
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My first book, Living Independently on the Autism Spectrum, will be available in stores in June 2013. It is currently available for pre-order at many major retailers, including Amazon and Barnes and Noble.
RESOURCES
- Corin Borsily Goodwin and Mika Gustavson, MFT: Living with Sensory Sensitivities
The parents decided not to take him to museums again until he could “behave properly,” hoping to elicit a voluntary change in their son’s behavior. Though his behavior was not a choice, what they really did was buy him time to develop until he could meet their behavioral expectations. While the outcome was as desired—eventually, they had outings again—the process was not benign. The parents thought the boy needed to learn to control his actions, but what he really needed was time for his neurons to catch up with his chronological development. He also needed help learning to adjust and accommodate where necessary. He finally did learn coping skills, but they were not always socially functional, leading to additional problems. Because he was bewildered by what was happening in his head, he felt like (and was sometimes treated as) a “bad kid” due to behaviors beyond his control, leading to spiraling frustration and anger with himself and his world.
- Brenda Rothman: Sensory Issues vs. Behaviors: On the Recent AAP Policy Statement
We need common-sense, evidence-based "monitor-and-evaluate" advice, but also need to consider the whole context. Consider adult autistics as a valid resource. Address the pain, emotions, and related problems of sensory issues, not just behaviors. Evaluate the whole person. - Landon Bryce: Compliance
When we stress compliance too much, we can put autistic people in danger.
