After I was diagnosed with autism last September at age 57, I finally knew why I have always felt so different from (neurotypical) others. And I now have an explanation for the behaviors that throughout my life have so often provoked misunderstanding, criticism and social rejection.
Importantly, for the first time, I realize that my sensory sensitivity and accompanying strong emotional reaction are normal for me as a person with autism. Not knowing this, others who are neurotypical often made statements like, “You’re too sensitive” or “It doesn’t bother anyone else” implying, “so why does it bother you?” As a result, I came to believe there was something wrong with me because I did not adjust like everyone else.
From an early age, I knew that I was “different” from my family members (and later others) who were less–or not at all–sensitive to the stimuli that would trigger an anxious or angry reaction in me. I internalized the judgment of their perception that I was somehow willfully difficult or contrary; inflexible, selfish or “high maintenance,” as my late husband had once expressed.
As a child I would get out of bed at night to pad down the hall and ask my father if he would lower the volume on the radio or television. I could hear it from my bedroom at the back of the house and was unable to tune it out to sleep, unlike my sister with whom I shared a bedroom. The longer I lay awake, the more anxious I became. My father’s response was frequently impatience and irritation, so I was relieved on those nights when I discovered him asleep and could gingerly turn the volume way down, tiptoe out of the room and back down the hall to bed.
I experienced other sensitivities, too. My clothes “itched” and my socks had to be on just right. The consistency and taste of milk repulsed me so I developed a ritual of scraping the breakfast cereal off of the spoon with my teeth, leaving the milk behind in the bowl. Touch bothered me. Cigarette smoke provoked a strong reaction and still does. My sensory radar picked up everything.
During college I realized that my sound sensitivity made me unsuited for either dorm life or shared apartment living, but I found a great house to share my last year of school. When I started working afterwards, I lived alone in a variety of different apartment settings; however, adjoining walls, floors and ceilings meant that I had noise on all sides and also a constant undercurrent of anxiety.
Neighbors playing stereos or arguing escalated this anxiety and stole my ability to focus on anything else. Unfortunately, neither my assertive communication nor my coping skills were well-developed at the time and my response often involved my stomping on the floor if the neighbor was downstairs, or pounding on the wall if they were next door.
Throughout my professional life, shared work spaces have also been a challenge. When I was new to my last “office” job a dozen years ago, I worked briefly with a colleague who used to play the radio and burn strong-smelling incense at her desk in the open cubicle area five of us shared. The sensory and emotional overload I experienced with the combined scent and sound prevented any ability to concentrate on my job.
Despite speaking with my co-worker about the effect of this on my work productivity, the manager ended up having to intervene and establish an office-wide policy regarding use of shared space. The individual stopped burning incense but still occasionally played the radio at a lower volume (and at the office holiday party, pointedly gave me a “Relaxation”-themed scented candle kit after drawing my name for the gift exchange).
In the past few years, my sensory sensitivities related to sound and smell, in particular, have grown more intense. Living in the only house in a cul-de-sac without central air conditioning, I have been repeatedly subjected to the scent of excessively fragrant dryer sheets drawn into my home through my evaporative cooling system during the hot summer months as neighbors dry their clothes. Last summer this caused several anger meltdowns in the privacy of my home. After regaining my composure, I approached one neighbor about the situation and asked if they would mind either using unscented dryer sheets or doing laundry at a different time of day.
Even after diagnosis, living as an acutely sensitive person in a largely de-sensitized world is challenging and I continue to seek ways of accommodating my needs while being kinder to myself and others. This includes shopping or handling errands during off-peak hours when I will encounter fewer people and fewer triggers, carrying earplugs in my bag and car and requesting needed accommodations when in triggering situations or environments.
It also includes an ongoing journey of forgiveness. Forgiveness of myself and others for not knowing about my autism earlier. Forgiveness for the harm that ignorance caused. And gratitude that at last I have found the missing piece of the puzzle and am free.