In my interview with SPD writer and activist Rachel Schneider, she tells me that her SPD is simultaneously a difference to be celebrated and a disability to be managed. Like many other people with neurodivergences, she has good days and bad days. She’s well aware of the gifts her SPD brings—she is sensitive, aware, and in tune with her surroundings—but she also feels the impact of not being able to work in particular settings, go certain places, or be in highly stimulating environments.
The SPD label mirrors the descriptions of the other neurodivergences discussed in this book, but its unique point is in its particular physical manifestations. While Schneider shares the same emotional sensitivity, perceptive qualities, and proclivity for overstimulation that people with other neurodivergences experience, she and others with SPD also find themselves craving particular sensory input and strongly avoiding others. This is most often seen with fabrics, tastes, sounds, and smells. Schneider craves strong, tight hugs but steers clear of surprising loud noises. She will heartily engage with a close friend but will avoid too many encounters in one day and has a strict rule of working only from home, which she has had to negotiate up front in job interviews.
When I first spoke with Schneider, she was six months into parenthood with a new baby daughter. Confident and with years of SPD awareness behind her, she didn’t seem too phased by the noise, routine change, and commotion of having a baby in the house and in her life. But that’s because she had already begun to make accommodations for herself, and all her close friends and family were educated about her SPD. Like CC Hart, the massage therapist with synesthesia who avoids highways because she sometimes can’t track where moving objects are in relation to her, Schneider has a similar experience of feeling overwhelmed in certain environments, and her husband and close friends can now pick up on her behaviors when she’s starting to shut down or “lose her senses.”
Medication for co-occurring anxiety has been helpful for Schneider, as has working with a psychotherapist and occupational therapist. Originally told by a doctor that she had “panic disorder,” it wasn’t until she was twenty-seven years old that her sensory symptoms were finally recognized as SPD. A psychologist suspected the diagnosis but referred her to an occupational therapist to confirm. Now Schneider says going to the gym is her “best medicine of all,” and she feels much more connected to her body.
The SPD Experience
Although it is not yet included in the DSM, SPD has been taken up by psychologists, researchers, parents, occupational therapists, and numerous community advocates. The leading research, practice, and advocacy organization for SPD is the STAR Institute for Sensory Processing Disorder in Colorado, founded by Lucy Jane Miller, PhD. The institute designates the following key statements as indications of possible SPD:
Many women find themselves seeking answers for their heightened anxiety after they move in with a partner or have children and discover a significant difficulty with the amount of touch resulting from cohabiting. Other women have had challenges with balance, coordination, sensitivity to smells, resistance to sex not explained by other factors, and managing work tasks. Occupational therapists in particular have taken up the task to educate the public about basic senses such as proprioception (the sense of self and body position), interoception (the internal sense, including feeling warm or hungry), and the vestibular sense of balance and movement.
Much of the focus within the SPD community has been on getting SPD officially recognized in the DSM so that children can get accommodations at school and get support for occupational therapy through insurance and the medical system. This tension between demanding official recognition and access to support on one hand and the seemingly opposite desire of wanting to be respected for neurological difference on the other hand is common across neurodivergences and in the conversations that make up the neurodiversity field. It’s important to note that both desires are equally valid and can coexist. Many people hold both understandings simultaneously within themselves. For instance, the statement “I must read material several times to absorb the content” can be understood as meriting treatment or accommodation but can also elicit pride in identity—such as someone who identifies as HSP needing repetition because she processes information very deeply.
The SPD label has come to dominate the practice of occupational therapy for children, but less so for adults, as it is often missed because of its overlap with autism and ADHD. Originally described as “sensory integration dysfunction” by A. Jean Ayres in the 1970s, SPD has since been taken in by the field of occupational therapy as an increased number of children present with sensory processing differences. I say “differences” because the descriptions of families who seek help for SPD make it clear that how people process sensory input varies widely. The common cluster of “symptoms” described within SPD primarily includes overreactivity or underresponsivity to stimuli such as touch or noise. In both cases, the polarized response can interfere with how a child or adult interacts with others.
Three subtypes of SPD are generally described: sensory modulation disorder (SMD), sensory discrimination disorder (SDD), and sensory-based motor disorder (SBMD). Within these subtypes exist degrees of sensory overresponsivity, auditory sensitivity, postural challenges, and other factors. This breakdown of subtypes was first put forth by Lucy Jane Miller and colleagues in 2007 as a way to solidify the parameters of a potential diagnostic category in the DSM. Some medical scientists have resisted including SPD as a “disorder,” but many parents and practitioners want SPD to be properly acknowledged because of the effect it has on children, adults, and families.
This is similar to the situation with other types of neurodivergences. There is a sense that a particular neurodivergence does not make people inherently disabled, but they feel disabled because of the generally overstimulating environments of dominant neurotypical culture and settings. Autistic scholar and writer Nick Walker and others call this the social model of disability, as opposed to the medical model of disability. As we have already pondered, Who is disabled? Who is “disordered”? Who defines “normal”?
Intimate Lives of Women with SPD
Lisa has challenges with sensory modulation, overresponsivity, and sensory craving. Everything is intense for her, and she gets overwhelmed quickly but simultaneously craves input, such as particular smells. She also has dyspraxia, which means she has trouble planning new movements with her body and sometimes bumps into things. She is creative, warm, and engaging, having worked as a school art teacher for many years. Now forty-eight years old, she has three children in their teens and twenties.
“When I become overstimulated, I have a meltdown—I start crying and can’t stop,” she tells me. “And this would happen several times per week.” What follows surfaced in almost every interview I conducted about SPD: “I have trouble with touch. When someone touches me lightly, it physically hurts. My husband and I have had challenges with sex. That’s why we went to couples therapy; we were trying to figure it out.” It was actually Lisa’s couples counselor who initially suggested SPD, but it would take time for things to become clear.
“I went to my primary doctor, and she didn’t know about SPD or where to send me, but suggested seeing a psychiatrist.” The psychiatrist, however, didn’t know what SPD was. “I started crying in her office and ended up explaining it to her and left after ten minutes,” Lisa says. “I didn’t know where to go. She suggested looking at the big Chicago hospitals, but none had any info about SPD. Then I went online and the STAR Institute in Colorado popped up and was full of good information. I decided to go to Denver to see them.”
This is a common story—women interfacing with doctors and therapists who have outdated notions of behavioral presentations that unknowingly mask hidden sensory challenges. With little education, training, or awareness of these issues among medical professionals and with stigma and stereotypes surrounding women and their “hysterical” experiences, women often have to be their own advocates and cycle through several doctors or therapists. “I’ve always had sensory processing disorder, and I never knew that and never knew what it was,” Lisa says. “I was diagnosed as an adult and wasn’t even aware that it was a thing. It was so spot-on. And it was really nice to know a name for what was going on.”
Jen also found her way to STAR. “I had no idea I had SPD, but my son was struggling with his development, so he was in early-intervention occupational therapy from the age of eighteen months. I was filling out all these forms for my son, and I was like, ‘Doesn’t everybody feel like this?’ And my husband was like, ‘No.’” Formerly in sales and the construction industry, Jen was always at ease moving around multiple construction sites in a day but could never sit still at a desk. Now as a parent, she says, “Somebody’s always touching me,” which is challenging for her. “I had faced these same kinds of challenges my whole life. I had to have all my clothes extremely tight and had my sisters count and make sure all my buttons were buttoned up.”
Jen often found herself saying things like “Everything’s too loud” or “Honey, please don’t touch me.” “You mean not everyone feels dizzy when they walk into grocery stores?” she asks rhetorically. “I started getting occupational therapy and was very grateful. I do better just talking through my feelings with my therapist, recognizing and walking through what in my environment is causing me to feel a certain way. I don’t need a ball pit or a swing, though I do love tight hugs and squeezes,” Jen says, referring to the diverse ways in which occupational therapists work with clients, especially adults.
Both Lisa and Jen worked with the same occupational therapists at STAR. And as with Rachel Schneider, Jen found that physical exercise is a key component of her therapy. “If I don’t exercise, I tell my husband, I’m going to the dark place.” Exercise—in Jen’s case weight lifting—helps prevent both anxious and depressive symptoms for Jen.
“My occupational therapist also puts me into a hammock—and that swinging motion gives me clarity,” she says. “All of a sudden I’m able to realize certain things about my day or why I was feeling a certain way. But really, she’s just helping me make sense of my sensory experience and helping me not feel bad on an emotional level. This is not only a sensory challenge, but emotional as well. I can manage the physical—I know I like clothes a certain way and I don’t want to be touched. We do family air hugs.”
Women Engineering Change
Sarah Norris and Carrie Einck are occupational therapists at the STAR Institute, and they helped expand the adult and adolescent practice area at STAR, working with Lisa and Jen and others with SPD. They grew the program in 2016, which now includes a broad spectrum of work to help others become empowered and independent in daily functioning. Sensory work is just one of the specialties of occupational therapists; STAR, in particular, also does research, education, and treatment.
“A lot of information and treatments are out there for kids, but what’s available for adults is very limited,” Norris tells me. She and Einck have been doing extensive literature reviews, teaching and training other practitioners, and developing a program for adults and adolescents who are sensitive to crowds, bright lights, unexpected touch, and uncomfortable clothing, and who feel anxious. “It’s not always about trauma in childhood,” Norris says. “A lot of the women who reach out to us in adulthood have already sought out a lot of other services by the time they get here and have received many diagnoses—typically depression, anxiety, and bipolar. And none of those diagnoses ever seemed to really fit, and the treatments weren’t working. They would fill out the checklists, and it would just not feel like a fit and didn’t make sense. And then once they got their hands on sensory-based information or research, they have this moment of ‘This is me! This makes sense!’”
It’s not that other contributors or diagnoses can’t coexist, adds Norris, but the sensory information provides a new frame that makes the picture more complete. “When I reflect on the whole life span, from infants with SPD to adults with SPD, a critical time is often in middle childhood and early teenage years—that’s when the mental health layers begin to compound sensory challenges.” Norris points out that many gifted and sensitive children develop severe anxiety, for example. And as they move through their teenage years into adulthood without proper support, they face multiple mental health diagnoses.
A typical client of Einck’s is a woman who’s newly married or a new mother and is noticing new challenges related to sharing space with other people—tolerating new sounds and experiencing an increase in touch and other sensory stimuli. Sometimes women realize their own sensory processing challenges after their children are diagnosed with one. Because of that, Norris says, “many of the parents are able to articulate in detail what their experiences are, and it had helped Carrie and me reflect on our work with children because now we have someone who can tell us what it feels like for themselves.” Einck and Norris dream of a day when SPD and occupational therapy are more widely understood by the public. “A lot of people don’t even know what occupational therapists do,” Einck says.
The Occupational Therapy Experience
Einck explains that each person receives individualized treatment through various experiences—it’s not like popping a pill. A sensory integration clinic typically has a gym and an assessment area. Bright blue and red gymnastics mats are spread across the floor, swings dangle from the ceiling, and smaller tools are tucked in drawers and cupboards for finer exercises. An occupational therapist will begin with checklist forms to get an initial sense of a person’s strengths and challenges; sensitivities to smell, taste, and sound are all assessed. After the assessment is feedback—offering the individual a way to make sense of what was observed and felt while trying the swing or balls, for example. Is there a vestibular sensitivity (that is, one associated with movement through space)? Is the person prone to becoming car sick? Then comes the goal-setting portion to help a person integrate and improve upon very practical, tangible parts of her day, from sexual intimacy and touch to managing fatigue or making grocery shopping tolerable. Another big area is managing sound sensitivity, especially when kids and babies are loud or crying in the house.
Einck interchangeably mentions function, joy, and calm; these are the primary goals of occupational therapy in her eyes, especially for work with adult women. Many women can’t identify what calm feels like or what high arousal feels like, she says, but using particular fabrics and stretchy material or experimenting with heights and trampolines will all help give a sense of a woman’s ideal level of stimulation. Feeling an overall sense of “regulation” is what many sensitive neurodivergent women are after, as anxiety is so common.
Currently there’s not a lot of uniformity in how adults with SPD are treated, so I believe this is actually an exciting time to seek out care. Women with SPD have the opportunity to ask for what they need and want, letting the occupational therapist respond directly to their needs and requests in the moment. Do you need more touch and pressure, or less? Do you find that certain colors are more soothing than others? It’s almost like having someone respond in real time to your triggers and soothers.
Lisa, for example, who is Einck’s client, was introduced to the Integrated Listening Systems (iLs), an intervention partly based on the research of Stephen Porges. Involving a headphone set with therapeutic music, the iLs and Porges’s research have been lauded for their practical applications in soothing the vagal nerve (a nerve implicated in both post-traumatic stress disorder and SPD). She also has a ball, trampoline, weighted blanket, and brush for her skin, all introduced by STAR. By using such tools, Lisa gives her body the input it needs to feel soothed and regulated, whether she’s jumping, bouncing, cozying up to certain fabrics, or feeling pressure applied to her skin. This is a primary function of an occupational therapist—to simply guide and observe as a client interacts with such materials and devices and to help point out when the client appears soothed or hesitant, or startled or excited, or uncomfortable. Many of us may unknowingly get triggered by everyday textures or physical requirements; the occupational therapist helps point out both the triggers and the soothers.
The iLs has had the biggest impact for Lisa, who says the sounds relax and calm her, but help her feel alert at the same time. She tells me she hears, thinks, sees, feels, and comprehends better. Her attention and executive function are much more online as a result. “Now it’s very rare that I have a meltdown,” she says.
When I ask Einck about emotional overwhelm and meltdowns, she explains that emotions are always overlayed with senses. Even neurologically, there is a “dual coding,” such that anytime a person has a sensory experience, an emotional experience happens at the same time. “It’s imperative to address emotions and sensations, because they’re both happening and they’re both real,” Einck says. Lisa underscores this point to me. “The crying is a neurological reaction,” she says of her previous meltdowns. “So it isn’t caused by emotions; it’s caused by the brain being overstimulated. It’s the weirdest thing because in my mind I know I’m fine, but I can’t control the crying. In my mind I tell myself I’m okay, but my brain has had so much input that I can’t take it anymore.”
Norris tells me about a client who was complaining of feeling overwhelmed and tired all the time. She spent a week at STAR doing an assessment and creating a “sensory lifestyle” based on her needs throughout the day, starting with waking up in the morning and easing into the day. Bouncing on a trampoline, brushing her skin, and chewing on a chew toy all became part of her routine. After six months she was feeling like a better teacher, partner, and mother, and she was finally feeling fulfilled by her daily activities.
The eventual goal is for psychologists, social workers, primary physicians, and others to understand the sensory lens and integrate sensory care into their practices and make referrals to occupational therapists when appropriate. But more awareness, education, and outreach are needed first. “The combination approach is so much more effective than doing one at a time or doing either/or,” Norris says. Therefore, Einck always likes to make sure that a psychotherapist is being consulted simultaneously so that her clients get the best care and support, and ultimately the best plan is determined.
“I think our two professions working together is the future of adult SPD treatment,” says Einck of occupational therapy and psychology. “You can’t piece apart having a tactile experience from an emotion. The two areas of the brain are constantly interacting and constantly talking to each other.” What often happens with the women she sees is that they immediately direct their attention to the emotions they’re experiencing rather than the sensory experience. “But what is the sensation?” Einck asks them. After swinging on a swing, a client may say she feels scared, but taking a moment to observe accompanying dizziness will reveal a lot about the woman’s underlying sensitivity—in this case a vestibular sensitivity.
Occupational therapists like Einck and Norris help people understand their bodies and their reactions to stimuli. Pain, pleasure, and neutral sensory experiences are dual coded with memories. Grandparents, smells, colors, difficult times, lakes, valleys . . . sensory cues hold clues to our past and our memories. Many women latch onto language from popular psychology, such as “panic attack,” when often they are instead experiencing sensory overwhelm. The treatment for a panic attack may not work for the adult woman who in fact has sensory processing differences. Frames of reference matter, and consequences of a misdiagnosis or misattuned therapy can be very serious. A woman may sit in a therapist’s office for years looking for answers in her childhood; but again, Norris reminds that there doesn’t always have to be severe childhood trauma, as Freudian psychology would tell us. Sometimes there is, but often there isn’t. Sensory overload can look like anxiety, but once women have more information, they can better share and explore the sensory angle with a psychologist or other therapist.
Occupational Therapist as Rebel Leader
“Historically, for a long time there was a belief that the problems that these individuals were showing in areas of sensory and motor challenges were not things that carried over into adulthood,” the executive director of the Spiral Foundation (Sensory Processing Institute for Research and Learning), Teresa May-Benson, tells me. “Up until the 1990s, people believed that kids grew out of these issues. There wasn’t a belief or understanding that adults could even have these sensory or motor issues. In recent years research has been looking at this, and we know that adults do demonstrate sensory processing problems.”
May-Benson impresses me from the minute we start chatting; she articulates thoughts I’ve had as a journalist, but because she holds a doctorate in occupational therapy, she has hands-on experience with adult women, and case histories pour out of her during our conversation. “Part of what happens is that some issues in children that are sensory related—in adults they become psychological problems,” May-Benson says. “And the adults end up being seen as a psychological issue. Here [at the Spiral Foundation] we see a lot of adults who’ve been down the road with the psychological community and been given a whole string of diagnoses from psychologists, and nothing has worked for them . . . and when they finally come here and we tell them they have sensory defensiveness or praxis problems and that’s why they can’t get organized, they feel immensely relieved and say, ‘Oh my God, someone finally understands what I’ve been going through!’”
The invisibility comes with autonomy, May-Benson tells me, explaining that adults simply avoid situations that make them uncomfortable, whereas children can’t. An adult may not know why she avoids particular situations, but she does it anyway. Children invariably wind up in situations that confront their sensory challenges—such as noisy playgrounds, an annoying toy pushed in their face, or loud siblings. For adults who avoid certain noises or locations, this may impact their lives in different ways—they go on fewer social outings or have a lower tolerance for touch in romantic settings. Then the focus becomes behavior, and they seek out a psychologist. This is what happened with Schneider, who later became an outspoken advocate for the SPD community. The signs were there during her childhood, but no therapist or doctor understood or correctly identified her sensory challenges. All they saw was anxiety. This is common, says May-Benson, and creates a difficult position for adults. You may hear someone say, “She’s my clumsy friend” or “She’s a picky eater.” Or the most common, “She’s just sensitive.”
Many parents quickly refer their children for any sign of difference in eating behavior or fussiness with clothing, and so SPD is more often recognized in children. “Parents are more likely to notice and want to address issues,” May-Benson says, “so sensory integration intervention and assessment have been focused largely on children.” Even for adults, occupational therapists are often trained to work only with elderly populations in nursing homes, not the general public with sensory challenges.
Since SPD is commonly seen in autistic individuals, May-Benson says that “there’s been more awareness of these sensory issues, at least with autism,” as children with autism are growing up. As a result of this growing adult autistic population and the sensory challenges that come along with autistic adulthood, researchers and practitioners have started to accept that adults more broadly may have sensory sensitivities and that they are not exclusive to autistic adults. “We’ve known this for years and years,” May-Benson says, “because when parents come in, eighty percent of the time they say, ‘Oh! Just like me!’ So we’ve already seen this in parents. We know these sensitivities persist into adulthood.”
When women come in to see May-Benson, her team relies on a suite of tools, including an adult/adolescent sensory history (AASH), psychometric research, and interview questions about lived experiences. “We tend to find more adult women seeking services than men”; the men who do end up walking through her doors often have previously tried to self-medicate sensory overwhelm with alcohol or drugs, she says. But many women come to her seeking support for being “sensory defensive” or because they have difficulty keeping a job given how disorganized they are. “We see a huge amount of anxiety. People who are very sensory defensive, super sensitive to sensory information, are being bombarded their whole lives with sensory input that is hard to manage—so essentially they are being exposed to ongoing trauma. The disorder itself is actually just life—it’s traumatizing them. So those individuals are likely to have higher rates of anxiety because they’ve learned to live in a world where everything is making them anxious. Also related to that is depression, since anxiety and depression are interrelated.”
Sound Sensitivity and Misophonia
“The symptoms for me showed up when I was seven or eight years old, and I’m thirty-six now,” actress Kathryn Renée Thomas tells me. “I have this memory of being suddenly very, very annoyed by the sounds of my parents chewing at the dinner table. Suddenly they had to deal with this nightmare of a child who was constantly getting angry at them.” Thomas is the star of Teachers, a television show she helped create along with her comedy troupe from Chicago. She makes me laugh and I feel at home with her because her voice sounds almost exactly like that of my best friend from high school, who was also a comedic actress. “I didn’t have symptoms before then, although I did have tactile sensitivity when I was preschool age. Getting me dressed was always a nightmare because I didn’t like the way certain socks felt or the elastic on my pants. And my wristband had to sit on this exact spot,” she says. Thomas is describing a child with SPD, though she didn’t have a name for it then.
But what has dominated her adult life is a specific category of sound sensitivity called misophonia. While not officially part of the SPD diagnosis, many SPD researchers and advocates relate the two. Misophonia is sensitivity to sound, often severe, and the sensitivity to chewing sounds is common among misophonians. “I’ve had it my whole life since then, and I definitely experience anxiety,” Thomas says. “I get fidgety, have a racing heart, sweaty palms, and anger is for sure the way that it manifests itself. I get really, really angry. So whatever is the source of the noise, generally a person, I end up giving them a lot of dirty looks. We’re shooting a television show right now, and in between takes the other day one of our camera operators was chewing gum, and he snapped it. It made me jump and turn around and want to throw daggers at him. I definitely get angry. I can’t focus. It just throws my focus out of the room.”
Gum tends to be her number one trigger, and sometimes she wears headphones because she can’t focus otherwise. When she’s in situations she can’t avoid, like being in the writers room for her show, she tries to focus elsewhere and divert her attention—but that separates her from the conversation, and sometimes she feels behind or lost because she’s been in her own world trying to escape the trigger.
Emotionally, Thomas says, she feels guilt. The women she started her comedy troupe with are like sisters to her, and she feels bad because sometimes when her anger comes out, it feels irrational. The same happens with her parents. “I don’t want to give my loved ones evil looks, and I end up feeling really guilty.”
“I didn’t know it had a name until three years ago,” Thomas tells me. “I spent more than twenty years thinking I was just kind of weird and it was a pet peeve, but clearly this was not a pet peeve.” One day when she posted on Facebook a comment about her extreme annoyance after a meeting in the writers room, someone suggested she might be experiencing misophonia. She immediately looked it up and was blown away to discover that other people experienced it too. She then began opening up about it with her husband, parents, and coworkers. She didn’t want to seem like she was searching for an excuse, but she wanted people to be aware.
“I also experience visual triggers,” Thomas tells me, so even seeing someone’s mouth move can trigger her. She has memorized people’s chewing styles and names her friends who chew like bunnies or cows. I admit our conversation is hilarious—she is a comedy actress after all—but I know this is a serious neurological trait. “I’ll make sure that the people sitting next to me block whoever annoys me.” Her dad, who has a mustache, can even enrage Thomas when he twirls his mustache. “It’s the repetitive movement that triggers me,” she says. Her mom moving her fingers in a certain way on her cell phone also bothers her. As does fingernail clipping.
Thomas’s “antennae” are always up, contributing to her success in her crowded profession of acting. What some may see as a disorder or weakness is the very thing differentiating her from so many others and driving much of her leadership as a writer and actor. She notices details, incorporates her awareness into her writing and theater, and produces comical work that can seem cathartic. “I tend to have a lot of anxiety in general, even outside of the misophonia. So I started doing yoga, which I really loved, but there was always a person who breathed the loudest to show they’re the best at yoga. And that would always trigger me, so it just wasn’t relaxing. That person did not need to breathe that loud!”
Thomas initially thought she was having what she called panic attacks; her anxiety has always been a standout feature for her. “I’m an open book,” she tells me. “My mom is a therapist, and we were a family that was very open about mental health.” She’s had periods of depression, but she never clearly understood the extent of the anxiety. The medication Lexapro has been helpful for general anxiety, though she’s not sure how much it has helped with misophonia.
Even Thomas’s therapist had never heard of misophonia. “When I found out it had a name, I started looking up various doctors, but everything I was reading indicated how early it was in the research and discovery period. The majority of people were not having luck with seeing doctors and other types of providers.” So she talks about it with people when necessary and she takes earplugs to places like movie theaters in order to not hear people chewing. “Kelly Ripa has misophonia, so it has to be real,” she says, half-jokingly.
Thomas tells me about a newsletter called “Allergic to Sound” that has a large following and helps people to reframe what it means to have misophonia. She says she likes the analogy of an allergy because her misophonia reactions feel like an automatic response, just like an allergy. And on Facebook groups, she tells me, folks feel free to rant about “those damn loud apples” and other seemingly innocent offenders. Finding groups of like-minded people is encouraging and helps her see the humor in her experience. Countless other women have found such groups in person or online, and countless more sense they need such connection but don’t yet know what they’re seeking because sensitivities like misophonia are so underacknowledged in the media, let alone in the research.
Coping with SPD
“Sweet kid! Sweet kid!” Spiral Foundation’s Teresa May-Benson repeats to me over the phone. Then she tells me about a teenage boy who oscillated between getting caught for smoking pot and then breaking and entering. “The only time I feel totally calm is when I’m doing drugs,” the boy told her one day. When May-Benson asked about the breaking and entering, he said, “Well, it’s a thrill.”
This kid had several sensory processing differences, and he partly dealt with them through substances and seeking thrills. May-Benson explains that girls and women, on the other hand, often may deal with sensory craving or feelings of overwhelm internally—and invisibly—by resorting to excessive worry; thoughts and emotions gradually become more challenging, but no one notices. Or they may read all day, turn to art, or in some cases say something to family members.
Gender socialization, gender norms, media stereotypes, and cultural attitudes have greatly affected the way that women and men seek out support for or deal with sensory experiences. In the case of women, many internal layers often build up in the form of anxiety and depression. In the case of men, however, coping mechanisms such as alcohol dependence are more common, May-Benson tells me. She continues: “This was a kid who was very tactile defensive, very sensory defensive, who felt he needed to do drugs—particularly pot—in order to calm down. But on the other hand he needed something that was challenging to his system and could get the adrenaline going. So the breaking and entering would give him a rush.”
I know for myself in my twenties that I had a reliable habit of every few days needing to stir things up as a way to release pent-up energy. I would start to sense an anxiousness, a restlessness, a feeling of wanting to bust out. And invariably I would start arguing with my husband, as my default outlet has always been my voice. This conversation with May-Benson is revelatory.
Another of May-Benson’s clients was a young man who was very underresponsive and had trouble with driving a car because he would lose his sense of spatial awareness; he wouldn’t know where he was. And so he decided to ride a motorcycle instead because the vibrations, providing an intense sensory experience, helped him know where he was. “This is why so many young people seek things out like bungee jumping, because they can’t get that kind of intense experience in everyday activities.” People seek calm or seek intensity, she explains. There’s a process by which all of us are seeking our sweet spot, our ideal point of regulation where we feel comfortable, in the zone, and in our flow. We take in basic sensory information from our environment; first, we assess its importance and relevance, and then we use it to regulate our arousal level so we can either habituate to inputs that aren’t important or increase our attention to inputs that are threatening or relevant. If that process of modulation works a bit differently, then a person may have a high arousal level, remaining in a state known as fight, flight, or fright. That person’s system is constantly being alerted to information that most people don’t pay attention to.
Individuals who have challenges modulating information may constantly notice the buzzing of the refrigerator or the lights above, explains May-Benson, and therefore their arousal level is constantly being triggered. They might get irritable, be unhappy, or be unable to concentrate, so they end up having problems staying focused. Such individuals are antsy and on edge. May-Benson tells me about a woman who sometimes accidentally punched her boyfriend when he tapped her on the shoulder or tried to initiate a hug, leaving the woman filled with embarrassment. She often yelled as well—which I could relate to as I can sometimes yell when I feel startled. “The emotional reaction overrides the higher executive function in the moment,” May-Benson says.
I tell her more about my personal challenges at home. Sometimes when my husband and I discuss logistics, I switch into battle mode. “We see women like yourself a lot,” May-Benson says, “especially that overresponsivity and defensiveness. And in terms of the home life, that’s often where the problems surface and cause the biggest issues.”
The idea behind sensory integration work, May-Benson explains, is to help your nervous system adaptively respond to your environment. “The inputs”—referring to the toys, balls, swings, and other equipment typical of occupational therapy clinics—“set up your body for skills.” This is soothing to my ears, and the gymnast in me is stoked. “We want you to be able to process this information better and more effectively, not just learn splinter skills,” May-Benson says.
A Learning Process
“All I can say is that as the days go on, I feel my sensory issues less and less,” Rachel Schneider tells me one year after our initial conversation. I wanted to find out how she was doing. Her daughter, now a year and a half old, has earned the “toddler” label, which brings with it increased sensory demands on Schneider and her husband. It was clear that “mother” was becoming as much a part of her identity as advocate for the SPD community. “My daughter’s needs come first, and they always have, and I think in some ways I’m exposing myself to things I normally wouldn’t have exposed myself to,” Schneider says. She’s not trying to deny her SPD—just the opposite. After initial phases of diagnosis, acceptance, relief, and advocacy over many years, she has integrated all her learning and experience into her lifestyle and her sense of self. The experience or feeling of “other” has no place in her life now, and she has even taken her expertise into the workforce, becoming a diversity and inclusion expert for human resources professionals and recruiters.
“My husband and I took our daughter to music class a couple weeks ago, and I was worried, but I had the best time of my life. My daughter has shown me how much I can actually handle outside of the barriers that I’ve comfortably set up for myself,” she explains. “Before I knew about SPD I spent much of my life being pushed over the edges of what I was comfortable doing. Nobody knew why I had a limit to where my comfort ended, but in adulthood I’ve found where my walls are and I know how far I can go. So having my daughter has given me space to push those farther than I thought possible in many ways.” For example, Schneider tells me about a time when she and her sister took their babies to a kids’ pool, and she had so much fun that she wasn’t even thinking about her SPD or her sensitivities and usual limits. She’s able to handle more than she expected, although, she says, “I’m also burned out more than I used to be, for sure.”
The running and constant movement have been easier for her to tolerate but still provide a sensory challenge. Schneider says bath time is particularly hard, which surprises her. “There’s a lot of visual and auditory hitting me at once”—the running water, the squeamish child, and the feeling of the water itself. “And of course there are times when I have a shutdown, where I have to go to the other room and lie down on the floor and take a deep breath.”
I ask Schneider whether some of her surprising experience with motherhood may stem from sensory-seeking inclinations. The music and pool time both strike me as forms of sensory stimulation that could be deeply pleasing and fulfilling, and many of us are unaware that we are actually craving these things. “I do find water peaceful,” she says, “but the main thing is that this is for my daughter and she’s happy.”
Schneider also continues to pay attention to her needs. When her daughter was taking music classes, Schneider asked the class director about making a scheduling change that would allow her husband to be present more often, which helps Schneider feel calmer in such settings. The director praised her for sharing her story and asking for what she needed for her and her family. “I want my daughter to experience the world,” Schneider says, “and I don’t want my challenges to hold her back in figuring out who she is.”
This is a theme of her life, says Schneider—encouraging people to do the things she feels she cannot do because she doesn’t want to hold other people back. She knows that her sensitivities are often positive and unique, but she doesn’t want to let the challenging parts, like meltdowns and shutdowns, affect what her daughter, friends, and family experience.
Regarding work, Schneider was just finishing a five-year work-from-home contract in copywriting and was in the process of interviewing in related fields such as branding and recruiting. She decided to disclose her SPD diagnosis to employers up front, because it’s part of what she feels makes her unique. Through her work in human resources copywriting, she helps companies recruit individuals by helping those companies tell their stories—and this theme of personal difference and diversity runs throughout her own life and her work. So she wants to work with teams where she is welcome, and disclosure has been an important part of feeling happy and comfortable on a team. “Here’s who I am and if this works for you, great; and if it doesn’t, better to know now” is how she explains her approach to interviewing and trying to get hired for a new job.
“I’m very excited about differences,” Schneider says. “I think they make for a unique tapestry, a richer culture.” And she revels in the fact that so many people are starting to stand up and reveal their sensory differences. She encourages people to disclose, especially at work, as that makes for an inclusive workforce. “I get to write about a diverse and inclusive workforce, and I get to be part of a diverse and inclusive workforce, so it’s neat to have both sides.”
Regarding her life at home with her husband, Schneider says that he knows her sensory issues better than anyone—sometimes even better than she knows them herself. When she’s overstretched, he sometimes gets the brunt of her exhaustion, but there’s a deep understanding. She recalls a situation when she felt pushed to the brink and “barked” at her husband after seeing how calm he was in the next room. But, she says, they both knew it was because she hadn’t had her quiet downtime or used her therapeutic brush (what’s called a Wilbarger brush, which is usually run along the skin of the arms).
Schneider and I talk about how much “managing” we’ve had to do in our everyday lives—managing our boundaries, energy, sensory challenges, activity levels, relationships, work life, and more. For instance, if she’s invited to go to the zoo, she immediately imagines the heat, sounds, animals, and crowds of people. But if she’s invited to a swimming pool that she has visited several times before, that familiarity makes her feel more at ease. And for mothers, there’s even more to manage. “I honestly believe that moms with sensory issues are superheroes. We are superheroes on a daily basis because of how we have to live our lives!”
Schneider was worried about being married and sharing a home with someone and then having a baby and dealing with sensory overload, but she’s learned more about what she needs, makes sure she’s around people who appreciate her, and finds she’s able to be there for her family because she’s so enthusiastic—and that motivates her. “I think the more we own ourselves and our differences, the more we become comfortable with ourselves and our differences.”