Photo by Darius Bashar. Creative Commons.
“When we feel vulnerable sharing something with someone, I think it’s because we are actually judging or shaming ourselves ... And then we’re afraid the other person will as well. We’re afraid they will confirm our worst fears about ourselves. That’s why it’s scary. We fear their rejection because we’re really fearing our own rejection of ourselves.” —Kara Loewenthiel
“The reward for conformity is that everyone likes you but yourself.” —Rita Mae Brown
I have sensory processing disorder, and I’m (probably) on the autism spectrum.
I was formally diagnosed with SPD in 2014, but I’ve been sensitive to certain kinds of sensory input my whole life. I have not been formally diagnosed with autism, about which I’ll say more in a bit.
As a small child, I first noticed my sensory sensitivity when I was trying to sleep. Even a small amount of light coming in from under the door, or noises or voices from another room, were enough to keep my brain on high alert, making it impossible to relax. Even if I did fall asleep, I’d wake to any unexpected stimulus, making for a lifetime of restless nights. During the day, the sunlight seemed so bright it hurt. Even sunglasses often weren’t enough. I’d squint and squint until my eyes closed in protest.
I sought out some kinds of touch, including firm hugs and back scratching, and avoided others -- tickling, itchy fabrics, tags in my clothes. I found I also couldn’t sleep unless I had a lot of heavy blankets on me, even in hot weather; it would be years before weighted blankets became something you could buy easily.
Too much sound, whether it was overlapping loud voices or the TV at high volume, could make me anxious. I would feel scared, and burst into tears for seemingly no reason. I couldn’t find things unless I already knew where they were -- looking for something in a crowded or unexpected visual field was impossible and left me feeling blind and stupid.
For most of my life, I simultaneously held two beliefs about all this: one, that everyone was like this. And two, that I was somehow making it up, because the grownups around me kept telling me that it was impossible for me to be as sensitive as I was, and I should just try to ignore sensory input I didn’t like. That’s what they did. Trying to hold both feelings made me really, really confused.
In the early 2000s, a friend recommended I read Sharon Heller’s book Too Loud, Too Bright, Too Fast, Too Tight.. In it, Heller describes what was then called “sensory defensiveness,” a condition in which the brain and nervous system have trouble filtering out “irrelevant” stimuli. To some of us, every sound, touch and movement out of the corner of our eye could be important, even potentially dangerous, and we are on alert all the time. But living this way, especially in our modern and chaotic world, can quickly make us overwhelmed. We can become anxious and fearful, or even have meltdowns like overtired toddlers. We can’t ignore sensory input we don’t like, because our brains don’t work that way.
Reading Heller’s book helped me make sense of my whole life up to that point. I was massively relieved to know that I wasn’t alone. And she included a range of exercises and other sensory input -- running, swinging, spinning, rocking, deep joint pressure, music, soft and textured things to touch, weighted blankets and so much more -- that I could use to keep my nervous system calmer.
SPD is different for almost everyone who experiences it (currently estimated to be 5-15% of the population). It looks at eight different senses: sight, smell, touch, taste, and sound, plus vestibular (the sense that helps us balance), proprioceptive (the sense that tells us where our bodies are in space) and interoceptive (the sense of what’s going on inside our bodies). Most people with sensory sensitivities are more sensitive in at least one of these senses, but may also be under-sensitive in others, or may specifically seek out certain sensory stimuli to soothe themselves.
For me, I’m most hypersensitive to sound, visuals, interoception and touch. My senses of taste and smell are reasonably average. I’m under-sensitive in the proprioceptive sense, which often makes me clumsy, and knowing this, I steer more widely of people and objects than I often need to. I seek out certain kinds of sensory input from sound (my favorite kinds of music), visuals (pretty images often help soothe me, and a good immersive movie or TV show that combines visuals/good sound is great), and touch or physical activity: massage, heavy blankets, pilates, walking, rocking in a rocking chair, swinging on a swing, squeezing a stress ball, petting a reversible-sequin pillow, doing yardwork that gets a lot of pressure into my joints.
(Some of you may recall that I also have fibromyalgia. Frustratingly, the amount of physical sensation/movement I need to calm my nervous system exceeds the amount of movement I can do before I’ll go into a pain flare. For extra irony, the stress and anxiety I experience as a sensory-sensitive person in the world probably contributes to my chronic pain, but overdoing it on exercise doesn’t calm down my pain, even if it calms my nervous system.)
In Heller’s book, she mentions that sensory defensiveness (now more routinely called sensory processing disorder) is often a part of autism. In fact, it’s a key piece of the autism diagnosis. But not everyone who experiences sensory processing disorder is on the autism spectrum, as some research is beginning to show. That research also strongly suggests that people with SPD have unique cerebral structures, with fewer connections in the parts of the brain that handle basic sensory information.
Heller’s book made me wonder if I could also be on the autism spectrum. If so, it would help me make sense of a number of ways my brain seems to work differently. For example, I tend to think people mean exactly what they say, and for years this made me especially vulnerable to pranks or people saying the opposite of what they meant. If I said “can I come in?” and someone jokingly said “no,” I thought they meant it, and I’d be crushed. I also don’t easily recognize when someone’s statements have subtext or are disguising an ulterior motive. I’ve also been vulnerable to narcissists, people who brag about themselves constantly. To me they seem incredibly accomplished and also quite friendly. Meanwhile, others are running away from them.
I was always shy and socially awkward, especially as a kid. I couldn’t bear to make eye contact with people. I needed everything to be in the same place much of the time, needed my schedule to be as consistent as possible. I didn’t handle transitions well (and often still don’t; bosses have dinged me for “not being more flexible” when asked to change tasks). Play-acting and imaginative games make me intensely uncomfortable. And, although I wasn’t interested in trucks or dinosaurs as a little kid, I became obsessed with music, bands, and pop culture by my tween years.
The neurologist who confirmed my sensory processing disorder in 2014 also assessed me for autism, and concluded that either I am not on the spectrum, or if I am, it’s not disabling for me. This was decided largely on the basis of the fact that I am a fairly socially adept adult, able to engage in reciprocal conversation.
But in recent years we’ve seen more and more research on how autism presents differently in girls and women. Some autistic girls learn to hide their social ineptness by copying their peers, a practice that’s known as “masking.” Masking may be undetectable to others, but it’s exhausting for girls and women who do it. Like Jennifer, in the article, I vastly prefer to communicate in writing/text/online, rather than on the phone or face to face, because the latter forms can often overwhelm my senses, and I get tired or have a hard time following the conversation.
I’ve been masking since I was a girl. It is exhausting. But it doesn’t often show. So it’s no wonder my neurologist wasn’t convinced that I am on the spectrum.
But there are days when I forget the politenessess, and the first thing that comes out of my mouth isn’t a “Hi, how are you?” or some other pleasantry, it’s a brusque request or demand. Most of the time, I haven’t got a clue what other people’s motivations are, what’s going on inside their minds or what their body language is trying to convey. I hate April Fool’s Day because I fall for everything. In a new environment, I have trouble relaxing unless I know the plan for the day. I try to plan everything well ahead of time, and go over and over my schedule so there are no surprises. I can’t count the number of times I’ve burst into tears because a restaurant I planned to eat at was closed, an item I wasn’t to buy wasn’t on the shelf, or something else didn’t go as expected.
For the sake of science, my neurologist tested me for a microduplication on chromosome 16 -- called the 16p11.2 microduplication -- which is often found in people with autism, sensory processing disorder and similar divergences. I tested positive.
Shortly after reading Heller’s book -- but before I had any formal diagnoses -- I tried being more open about myself. Unfortunately, I was met with a lot of derision. One friend asked why I felt the need to “pathologize” myself. Another suddenly acted as though I was seriously mentally impaired. So I’ve hidden myself, for the most part, since then.
But more and more public figures are being open about their autism diagnoses, including comedian Hannah Gadsby and activist Greta Thunberg. They too face their share of backlash, but more often than not they’re met with admiration. And Gadsby, in her new show Douglas, talks about something I’ve often stressed: these conditions don’t feel like diseases or disorders, but genetic differences that would once have made us valuable to our tribes. In particular, sensory sensitivity would have made us the first to notice an approaching predator, or taste something spoiled in our food that could make everyone sick.
I consider these conditions as part of humanity’s genetic diversity. I don’t think we need to be “cured,” as some organizations do. Some of us may need accommodations to make our lives and workplaces more sensory-friendly: quiet spaces to focus and work, lights that dim or turn off, scent-free policies, fabric options for jobs that require uniforms, a variety of chairs for people who focus better when they can bounce or spin, and so on. These days, I avoid restaurants and other public spaces that are too noisy, I wear earplug-style earbuds when I’m out and about, and wish I could refuse to get into Lyfts that are full of the scent of cologne or air freshener. Small changes like this could make life a lot more livable for adults and kids like me.
For many of us on the spectrum, the problem isn’t our minds. It’s the fact that society is too fast, too loud, too bright, too rigid, too much. Our differences are not accommodated, in much the same way that people with wheelchairs weren’t as well accommodated before the passage of the Americans with Disabilities Act. We are expected to hide our differences, fit in, assimilate. But biologically, many can’t. It would be great if we could embrace and make room for that.
April is autism awareness month.