
The 10 of Swords from Tarot of the Mystical Moments by Catrin Welz-Stein
The title of this essay comes from Annie Kotowicz’s short and sweet memoir, What I Mean When I Say I’m Autistic. Consider this a set of CliffNotes to my experience of neurodivergence and related subjects.
In each section, I will share the broad strokes of each neurotype, diagnosis, and how it impacts me. It’s a lot of words, so feel free to use the links to skip to portions that are of interest. You’ll likely sense some recurring concepts and complaints. Each section is based on a larger, independent essay, and so many of the thoughts and themes—those of confounding mystery, of missing or compromised ability—run as a current underneath multiple sections and bubble up to the surface more than once.
Now, while I am only an expert on myself, I can assure you that there are likely people in your life who have had similar lived experiences. If you read any portion of this, you’ll be learning about the inner world of many (though certainly not all) neurodivergent and traumatized folks. You may even notice similarities between what I explore here and your own experience. This doesn’t necessarily mean you’re neurodivergent or that you have a trauma disorder.
Neurotype issues and trauma issues are human issues, often just with the volume turned up several decibels. If you find the details here resonate with you, I encourage you to explore more about a given topic on your own, and of course, I would be delighted to talk to you about any or all of it!
So, without further ado…
- What I mean when I say I have Sensory Processing Issues
- What I mean when I say I have Complex PTSD
- What I mean when I say I have Central Sensitivity Syndrome
- What I mean when I say I am Dys-Ordered
- What I mean when I say I have ADHD
- What I mean when I say I have Aphantasia
- What I mean when I say I am Autistic
- What I mean when I say I am Masking
- What I mean when I say I am Disabled
- What I mean when I say I am doing Trauma Work
- What I mean when I say I experience trauma and DysAuDHD as a neurotype
What I mean when I say I have a sensory processing disorder…
- I am sensory avoidant.
- I am sensory seeking.
- I have processing delays.
Since I was a child, I have processed sensory input intensely and with frustrating delays. Throughout my life, I have experienced a waxing and waning of this intensity and these delays. The swell of and subsequent relief from sensory overwhelm can feel as mercurial as the tides.
Some of my earliest memories involve being very uncomfortable and very picky.
Itchy seams, diabolical tags, clothing bunched up in the wrong places, things fitting too tightly, or hanging too loosely. It all drove me to distraction and distress.
My palate was extremely limited. I ate jarred baby food well into elementary school, sticking to just one flavor–peaches–because I wouldn’t tolerate any other varieties. I ate raw carrots, cut into pennies, and smothered with ketchup to hide their flavor. I still remember the sweet crunch of white sugar sprinkled over iceberg lettuce. This was a “salad” my grandmother would serve me, because it meant something green would pass my lips. I also learned to swallow food whole at a ridiculously early age so I could avoid the taste and texture of peas and other lamentable vegetables when I was forced to clean my plate.
Thank heavens that as an adult, I get to choose what clothing I allow to grace my frame and what foods I nourish myself with, but even so, my sensory experience can feel arduous. At their worst, sounds can hurt, sights can dysregulate, smells can confuse, unexpected tastes (and textures) can offend, and many types of touch are a minefield of complexity.
I consider myself sensory avoidant rather than overtly seeking sensation. I refuse, escape from, and brace for all the ways the world will assault my senses in a given day. There are activities I dread, or straight-up avoid, to keep things as neutral as possible.
The most extreme expression of my sensory issues is what I categorize as tactile defensiveness. There are so many things I can’t touch or allow to touch me. Wool is a no-go. Grass hurts. Sand is low-grade torture. Wetness and stickiness are problematic in many forms. Soft, light touch can make me feel unsafe. Walking barefoot is deeply uncomfortable. I even wear flip-flops in the shower, and god help me if the curtain touches me or some part of me accidentally touches the cold tile. The range of feelings I can experience while in the shower runs from vaguely unsettling to electric shock. Bathing should not feel so risky.
I don’t consider myself too picky anymore, but the few issues that do linger are all around texture. Raisins in a cookie? Chocolate chips in ice cream? No, thank you! Mostly, I require homogeneity in my food textures. Anything that stands out is a source of queasiness to me. The clear exception to this rule is crunchiness. I can and will add a satisfying crunch to just about any food I eat. I crave it. Give me all of the crunch.
The discomfort of over-processing is so obvious. The way I under process sensory data feels more subtle. It tends to play out in craving. Just like adding a wonderful crunch to a meal, I seek out visual stimulation, and I love loud music. Both make me feel marvelous. I also use certain sensory-seeking activities to soothe and stim. None of this is jarring or unpleasant or even compulsive, at least not when I am feeling regulated and calm. I feel an eager and warm inclination to explore my senses in these ways, and it can be thoroughly enjoyable. Thank heavens for this at least.
I experience the most obvious delay with my auditory processing, which the casual observer might mistake for hearing loss. I know it’s a delay, not a lack of auditory data, because I often hear/understand something said to me well after the fact. Conversations with me often feel like a long string of me not hearing you, asking you to repeat yourself, and then talking over you as you repeat yourself because I have finally heard you the first time.
Smell is the sense that so many find intimate and powerful, yet we seem to have the least vocabulary with which to explore it. Additionally, I have the least discernment when it comes to my sense of smell—it’s tough for me to get to the bottom of odors. It’s like having blurry vision, but through my nose.
Couple that limited vocabulary with my frustrating lack of olfactory refinement and layer that on top of nervous system hypervigilance, and things can get weird.
At least once a week, I encounter a situation where I am exposed to a novel or indeterminate odor, and my nose (and brain) registers that input as intensely unpleasant, revolting even, and entirely unrecognizable. I can’t tell what it is, but I can tell it smells awful. Mildewed laundry? Dead thing in the walls? Sewage? Some cursed combination? Beats me!
I don’t imagine this to be due to any delay; I suspect that this is my nervous system’s protective response to unknown olfactory data. It’s safer to assume that the mystery smell is being caused by something dangerous than by, for example, the smell of popcorn cooking in the microwave.
But check this out—after I register the first unpleasant whiff of a new odor in my immediate environment, any additional sensory data I am exposed to can quickly morph the awful smell into the authentic and sometimes appealing aroma. Hear the popcorn popping, see the bowl on the counter, and suddenly, in real time, the scent is transformed as if by magic.
And it is magic. The magic of my nervous system shifting from a state of high alert to one of calm and receptivity. The fact that my brain can trick me to protect me feels both brilliant and a touch unkind.
How I show up day to day, moment to moment, is all about how my senses are interrupting my world. Having a good, low-key sensory day? I feel happy and at ease. Having a rough day where everything grates and jolts? You can bet I’ll be struggling and on edge. It doesn’t get more fundamental than that.
What I mean when I say I have C-PTSD…
- I have experienced complex trauma.
- I have flashbacks.
- My nervous system is chronically dysregulated.
The difference between complex post-traumatic stress disorder and regular old, garden-variety post-traumatic stress disorder is the timing and the amount of exposure. PTSD is generally experienced and diagnosed after a single, distinct trauma (like a car accident or sexual assault) or after a series of traumatic events within a clear window of time (like those experienced by soldiers and refugees). The complexity of C-PTSD comes from the pervasiveness of the trauma and the hazy, long timeline in which it occurred. I am referring to childhood neglect and abuse—damage over years and years, injury that is muffled and obscured by familiarity and normalization. It’s death by a million cuts that you may not even remember because your body and brain won’t let you. It’s also sustained by those things that didn’t happen—support, validation, and comfort that did not exist when they were needed. For many, C-PTSD is the love, nurturance, and protection that was denied to them as a child.
When I say I have flashbacks, they’re not like those you might see in the movies, where a person is triggered by a current stimulus and thrown back, in their mind and imagination, to a specific moment in their past. In this state, they might relive sights, sounds, and other sensory data. To be honest, I am not even sure that’s how folks with PTSD experience flashbacks. That Hollywood depiction may be rooted in fact and function, or it may be a stylized shorthand for a psychological state that defies easy description. I’m sure it can vary quite a bit—from person to person and from flashback to flashback.
In any event, what I do know is that C-PTSD flashbacks, or at least the ones I’m intimately familiar with, are often referred to as emotional flashbacks. In my experience, these can be triggered in the most surprising and unpredictable ways: a blank look, a deliberate silence, the harsh pronunciation of a single word. And once engaged, I don’t remember explicit memories or sensory data of a specific situation. I’m consumed by the rising stress and reactivity of my body, and the implicit memories it holds of countless uncomfortable, frightened, and abandoned moments. My body’s felt sense and the conjured emotional landscape escalate my adult brain into a highly dysregulated state. I can almost taste the childhood fear and rejection. It feels intolerable, isolating, and out of my control.
My intuition tells me I’m flashing back to the myriad times my younger self shifted into freeze or fawn. Consequently, my adult nervous system tips into a similar unpleasant state. Once there, the sensations are complex and very disturbing. I am not sure how to explain a situation where you feel both hyper and hypoaroused simultaneously–like my fight and flight systems are engaged, but so is freeze*. It’s like not being able to escape yourself, and it is awful.
This has happened with such regularity in my life that I’m dysregulated more often than not. I don’t know if it’s accurate to say I’m in a functional freeze state, chronic survival mode, non-stop hypervigilance, or all three—but my nervous system is stretched thin: taut and reactive in the extreme. It seems to have lost much of its natural flexibility. I think about this constantly—how to course-correct, how to convince my body I’m safe, or how I would even know when I wasn’t in such a tizzy.
I try to soothe myself, but I’m not sure anything helps. I’ve made progress, certainly—but it’s slow, rugged work, and I still have a long, long road ahead of me.
*This is probably, literally what is happening. Polyvagal theory recognizes freeze as a mixed state of sympathetic arousal and a dorsal-vagal parasympathetic shutdown.
What I mean when I say I have Central Sensitivity Syndrome…
- I have migraines
- I have IBS
- I have fibromyalgia
I have migraines. I have IBS. I have fibromyalgia. Pain and discomfort in your body are hard. Not being able to rely on any predictable measure of ease in your day-to-day life is hard.
Not all chronic pain is related to trauma. Not all migraines and backaches are unprocessed emotional pain. Sometimes, a pain in the neck is just a pain in the neck. And yet, it’s widely understood that trauma and stress can lead to chronic pain and other physical dysfunction. I can absolutely corroborate that. I had my first migraine at age five. I have had them ever since–sometimes chronically, more than 15 a month. I was diagnosed with IBS and fibromyalgia within a year of moving home to care for my parents. This didn’t surprise me. Again, not all IBS and fibromyalgia diagnoses are directly related to how much pain we refuse to feel, but they most certainly feel that way in my case.
There’s evidence that emotional pain and physical pain are experienced in the same regions of the brain. A recent study by the Salk Institute has revealed a previously unknown neural pathway that serves as a direct connection for physical pain to flare emotional pain. My lived experience tells me the opposite is true as well. Emotional distress can cause physical pain. In my opinion, my fibromyalgia pain is emotional. It’s locked up in my body with the will and meticulous attention of an unkind, yet highly efficient bookkeeper. What I’m unable to experience emotionally comes out through my body as tension and discomfort. Refuse to hurt, and you will suffer. The body does, indeed, keep score.
Why some of us are more likely to form deep patterns of nervous system sensitivity and pain seems as mysterious as why some of us are more prone to trauma in the first place. Which came first—the trauma or the egg? In any event, to deny or dismiss the intrinsic link between emotional and physical pain and dysfunction would be, in my opinion, shortsighted and unhelpful. My whole life can feel ruled by this connection. Someday, I may be free of this kind of pain, but not today.
What I mean when I say I am dys-ordered…
- Issues with working memory/encoding/decoding/computation.
- Many other related troubles, additional signs.
- Superpowers!
I have been diagnosed with dyslexia and dyscalculia. I believe I am dysgraphic and dyspraxic, too. All of these “dys-orders” are considered spectrum conditions, and everyone who is born with one or any combination of them experiences them in a very different, personal manner.
For me, they show up as significant shortcomings in working memory (the function of your brain that handles short-term memory data while it is IN USE), decoding (reading), encoding (spelling), and a profound weakness with arithmetic (number sense and mathematical computation).
If you have more than a rudimentary understanding of these conditions, then you are probably aware of the difficulties I listed above. You may or may not know that these learning differences also impact some of the following areas: telling your right from your left, reading maps, following directions, telling time, using calendars, remembering names, reading handwriting, writing legibly, dancing, playing sports, overall proprioception, and on and on and on.
It was hard not knowing I was dyslexic. If you had told me that my lifelong frustration with spelling, grammar, reading, math—and GOD, even telling my right hand from my left—was more than mortifying ineptitude, I would have kissed you!
All my life, I have wrestled with a laundry list of dyslexic and dyscalculic hindrances, and I regret that I internalized them as deeply shameful personal shortcomings. These issues were, beyond any doubt, the primary reason I struggled in school. Yes, of course, the ADHD and autism were there, making things more difficult, and the anxiety and dysregulation often made learning all but impossible. Still, it’s the specific learning disability hang-ups and mess-ups that loom the largest in my memory. I saw them as the clear evidence that, despite what felt like a keen and curious intelligence within me, I was nothing more than a sham.
A smart person could spell, could read aloud, and could do simple math. It never once occurred to me that a competent person might actually not be able to do those things with ease and confidence—that the ability to encode, decode, and compute was completely independent of one’s value and intelligence.
In fact, it’s a discrepancy between one’s overall intelligence and one’s performance in school/work/life that’s one of the key diagnostic findings in a learning disability assessment. That I was, at age 49, shown to have a “general intelligence” hovering neatly within the 95th percentile*, but values for “phonemic proficiency” and “numeric operations” tanking down under the 5th percentile**, was a pretty significant red flag. Had anyone only bothered to look when I was a child, my education and—I don’t feel I am being hyperbolic here—the entire course of my life might have taken a drastically different course.
I feel it’s important to note that dyslexia can also come with a host of well-known superpowers, including but not limited to: richer-than-average artistic ability, creative reasoning, spatial awareness and relations, top-down big-picture processing, gist detection, inference, and narrative storytelling. Once again, every dyslexic (and dyscalculic, etc) may experience all or none of these. I feel privileged and grateful to say that I have been granted the majority of these superpowers to some degree or another. A marked exception would be an aphantasic deficit in 3-D spatial manipulation. More on that later.
I thrive through creativity, and I adore my style of visual expression. Unlike the struggles I have with encoding, decoding, and computation, my ability to see patterns, catch the gist, and infer meaning is so robust that it often feels like I learn through effortless osmosis. Half the time, I don’t know how I learned a thing or where I learned it—I just know it. Likewise, I excel (almost to a fault) with top-down processing. Eagerly intuiting and exploring the big picture is practically my religion.
So, for all the trouble, I love my dyslexic brain. It makes me who I am, and it allows me to fill my world with myth, meaning, beauty, and copious amounts of joy. Thank heavens for that, at least.
*As measured on the WAIS or Wechsler Adult Intelligence Scale.
**Determined by the WIAT or Wechsler Individual Achievement Test.
And now, in the most warmly ADHD of ways, I offer you the most ADHD of my CliffsNotes….
- I experience typical split attention and hyper focus.
- I have difficulty with impulsivity.
- My Default Mode Network is a trip.
ADHD is a hoot. It’s a massive pain in the ass, but it’s also hilarious, ridiculous, and like American Express, everywhere you want to be. I know more people with ADHD than any other type of neurodivergence, and somehow I have come to see us all as members of one disheveled, friendly, well-meaning, harried tribe. We are manifold, and we are good-natured goofballs.
It’s easy to think that way on a good day. Before I was diagnosed and subsequently medicated, I did not feel so light-hearted or casual about the way ADHD impacted me. But also, for the first 49 years of my life, I did not know there was a name for why things seemed so tricky, scattered, and confounding.
Like so many ADHDers, I found that my attention would swing all the hell over the place—skimming the surface but never diving in—until it did, and I became so hyper-focused that it felt almost physically painful to drag my attention away from that single-minded and determined focus.
Even more dysfunctional was all the deranged multitasking. It was here that I first recognized the impulsivity that plagues so many ADHDers. My mind was not able to triage any task or impulse, and so each new directive would ricochet around my skull with equal and alarming urgency. Once that klaxon was sounded, I literally couldn’t stop myself from starting the latest activity. It was compulsive, and it was completely non-functional. I ran myself ragged daily.
And of course, let’s not forget all the emotional dysregulation and rejection sensitivity. Ugh, how could we?
It was because of ADHD that I learned about the Default Mode Network. The DMN collectively chatters away when we are not focused on external tasks. It is the thinking our brain “defaults” to when left to its own devices. Neurotypical brains seem able to shift easily between the DMN and focused tasks… ADHD brains, not so much.
My ADHD brain and my DMN are wed in an over-the-top, full-throttle, no-holds-barred True Romance-style joy ride. They go nonstop. They think about thinking. They daydream, make plans, write scripts, time-travel, and consistently, verbosely inform me about me—and they love to let me know all about the backstories, motivations, and deep desires of everyone else as well. Without ADHD and a DMN on steroids, for better or worse, I would not even recognize myself.
But thank Christ for medication—going on stimulants was life-altering in the best possible way. Now, my ADHD brain is bright, active, and, more or less, calm. But even so, it never stops. Things just feel more tolerable now. I have much more to say about how stimulants helped with the intensity of ADHD emotional dysregulation, the impulsivity, and that diabolical urgency—and that will come.
Overall, it’s my opinion that the misery of ADHD is not nearly as great as the joy derived from go-go-going and the fine, fine kinship within the ranks of fellow weirdos like me.
What I mean when I say I am aphantasic…
- I lack a mind’s eye/ear/nose/etc.
- I can conjure everything but sensory projections.
- Aphantasia may influence my other types of neurodivergence.
Being aphantasic means I completely lack the ability to voluntarily produce images in my mind’s eye. The fact that many of you can do this blows my mind. I use the word “voluntarily” here because I am talking about being awake and consciously thinking about and imagining things. For the record, I, like many (but not all) aphantasics, dream in images and with other sensory data.
In any case, while awake, no sensorial data can be produced by my brain. I can ponder my sensual experience, even imagine it with rich verbal detail, but I can’t see it, or hear it, or smell it, or feel it. It’s a blank slate in here. I think in words. And in impressions. They are formless, silent, and invisible.
Let’s see if we can get at this more directly… Think about an object. An apple is the classic example. Close your eyes and picture an apple. Can you see it? Actually see it? Do you hear the crunch as you bite it? Can you smell the floral or citrus undertones? Do you feel your salivary glands kick in from its tartness?
I can’t do any of that.
I know apples. I can conjure the felt sense of an apple, the wholeness of an apple, those floral and citrus notes, the shape, the color, the natural history, the many varieties of apples, family recipes, and resulting baked goods. I know a lot of data pertaining to apples. I can remember countless lived and learned experiences with apples, but I cannot bring to mind any visual, olfactory, or gustatory representations of the damn fruit.
What am I missing because I cannot bring the apple to life in my mind’s eye? I am not even sure I could grasp it if someone tried to explain.
Aphantasia is considered a spectrum condition ranging from my end of the spectrum—aphantasia—to hyperphantasia, with stops at hypophantasia and phantasia in between. Some people—like me—are at one extreme end with zero ability. Others can sort of see hazy shapes (hypophantasia). Some can see color and have a much more fleshed-out visual in their head (phantasia). At the opposite end of the spectrum, people have photo-realistic images in their minds (hyperphantasia). Some people can even manipulate these images in their heads. What!? I can’t even.
What are you? Where do you fall?
Research suggests that aphantasics have deficits in working memory. Whether that’s because we’re worse at managing working memory—or because people who can visualize use that function to bolster theirs—remains to be seen.
Can this aphantasic difference further confound my already dyslexia-challenged working memory? Probably. It feels totally reasonable to suggest that if I could see letters or numbers in my mind’s eye, I might be able to hold on to them for more than a fraction of a second.
It’s also suggested that aphantasics have less robust and more inaccurate autobiographical memories. Would I have an easier time remembering my life if I weren’t aphantasic? Does this trait make it even easier for my dissociating brain to lose touch with memories? Maybe.
Likewise, my aphantasia explains why I don’t exhibit the dyslexic superpower of being able to manipulate 3D objects in my head. What a bummer.
There are indications that aphantasia can make individuals less reactive to written or visual stimuli designed to evoke fear. Basically, we don’t scare easy. Since we can’t picture the scary ghost in our minds, it is not as frightening. Perhaps this explains why I find haunted hayrides and scary movies not worth my time. Extrapolating further, might aphantasia offer me some measure of insulation from the intrusive visual and other sensory aspects of trauma flashbacks? If so, I’ll gladly take it.
I’ll close by sharing that several secondary sources I have found suggest that autistic people have a higher rate of aphantasia than the rest of the population. Imagine that…
What I mean when I say I am autistic…
This section will be a bit more extensive, because I think it’s the one people may have the hardest time understanding—both in relation to me, and perhaps to others they know who have received a late diagnosis.
Here are some things about me and my experience:
- Yes, I am autistic.
- See the aforementioned sensory processing issues.
- I experience rigid, black and white thinking, extreme requirements for sameness, and resistance to change/transitions.
- I require routines, rituals, and repetitive movements (stimming).
- I have issues with social communication and interpersonal relationships, which lead to hypervigilance and compulsive masking.
- I ♥️ Special interests!
Yes, I really am autistic. Of all my diagnoses, this is the one that’s met the most resistance, from both friends and medical professionals. And I get it; I do. Almost no one looks at me and sees an autistic person. The truth is, I have very low support needs, and the traits I do have, I camouflage efficiently and rigorously (some might even say brutally). Please trust me on this, and trust other individuals in your world if they open up about similar experiences.
Unless you’ve actively challenged it—out of curiosity or necessity—your understanding of autism is almost certainly shaped by media portrayals, casual fearmongering, and over a century of research that largely excluded women and girls. I can say this with authority (and no judgment) because that is how I did not recognize that I was an autistic person, too.
Where to begin? Sensory stuff. Not knowing when your senses will be assailed by a sickening odor, a painful sound, or a skin-crawling tactile sensation can leave a person feeling quite guarded.
And that, in general, is what my autistic experience feels like: being on guard. Wary, constantly bracing for confusion, vagueness, misunderstanding, danger, newness, the unfamiliar, the extreme, the unplanned, the overwhelming, and on and on. Each new tremor of the unexpected can trigger escalation and dysregulation in me that is measurable on the Richter scale. And under that: a current of near-constant dread. I never seem to have enough accumulated experience of regularity and safety, whether immediately or historically, to stop tensing up over how exposed I am to the ever-changing natural disaster that is daily life.
To manage this, I rely on any combination of the following: rigid thinking, stark black-and-white decision-making, research, reconnaissance, structure, lists, lists within lists, hacks, rituals, routines, superstition, planning, scripting, practicing, pretending, self-monitoring, self-soothing, self-medicating, numbing, and oh so much masking. Whew. If that sounds like a lot, please know that it really is.
It’s difficult for me to feel safe and at ease with people because reading/tracking their emotions, intent, and reactions can feel all-consuming. I am so fixated on reading other people that I can lose track of all the other details, including the actual content of the person’s speech. And then suddenly, I am keenly aware that I have no idea what my body, face, and feelings are up to, and I swing in the other direction to desperately pull myself together and look natural.
I spend so much time trying to read a person and subsequently managing my own physical presence and emotions in response that I often don’t have any sense of what is actually happening or being said. I can feel lost, confused, self-absorbed, and self-conscious. It can be mortifying, even with folks that I know and love.
Part of this is processing speed, I think. Social interactions can feel so labor-intensive and clunky, and I often don’t understand what was happening until much later. Much of my trouble, though, stems from an intense and constant focus on trying to find safety.
All this rigidity and masking is hard. It’s exhausting. And it all feels deeply necessary. The constant mental load of trying to feel safe and appear as though I am not losing my ever-loving mind is grueling work, friends.
But life as an autistic person also has its captivating perks! And for me (and for many others), the best/sweetest/funnest part of being autistic is the special interests. It is safe to say that my primary special interest is the natural world. Nothing moves or excites me more than nature. A runner-up, broadly speaking, is a category that encompasses myth, fantasy, sci-fi, and narrative histories. I love a good story.
Some of the brightest moments of my life have come from leaning in with my ADHD hyperfocus and digging deep into something that has hooked my attention. I can live, breathe, dream, and obsess over a given topic. The love and inclination I can feel towards one of these fixations is intense and delightful, like the electric charge in the air at the onset of a thunderstorm. It’s invigorating and thrilling, and in it, I can find a certain confidence and optimism. Then, miraculously, maybe just for the briefest of moments, I might actually feel calm, in control, and safe.
Thank heavens for Ancient Egypt, Greek myths, Arabian horses, sea shells, fairies, the European witch trials, vampires (I even wrote ‘Lost Boy’ fan fiction!!!), bugs, bats, orchids, birds, cephalopods, the Heroic Age of Antarctic Exploration, nature photography, string figures, Edward Gorey, mazes, yoyo’ing, Arthurian legends, countless celebrities, dinosaurs, saturniid moths, letter writing, bouquet making, and neurodivergence. Um, to name a few…
You can bet I have a lot more to share about what I have learned about autism, my autistic brain, and the intersection of all my flavors of divergence. Stay tuned.
What I mean when I say I am masking…
- I have a desperate need to fly under the radar socially.
- I use constant self-monitoring, social vigilance, planning, and practice to manage this.
- The effort and labor are compulsive and all-consuming.
I’ll begin by saying that I haven’t refined my awareness and opinion enough to distinguish between masking and camouflaging, though I know many people do.
What is masking, you might wonder? I’ll share a bit of my experience, but first, consider taking the CAT-Q, or Camouflaging Autistic Traits Questionnaire, which is now part of what is considered the “gold standard” in autism assessment. The CAT-Q is the portion geared towards evaluating how much one might mask or camouflage.
A total score of 100 or above indicates that you may camouflage autistic traits. For what it is worth, I score between 125 and 140 when I answer the CAT-Q. I’m certain the variation in scoring is due to how socially compromised I feel in the moment.
I’ll state this simply—I mask to manage how I am perceived by others. That perception means social acceptance and, therefore, safety.
I don’t actively exhibit any big, weird, over-the-top idiosyncratic behaviors. If I ever did, they were chastised out of me when I was young. So, I don’t have any significant fears that I will be perceived as abnormal. What I do have is an almost pathological sense of being unsafe and vaguely othered.
My childhood, education, and young adulthood taught me to feel confused, misunderstood, and judged. And I somehow—like so many other autistic women—developed the belief that if I could just reel in my body language, behavior, outwardly expressed feelings, and speech, I would not arouse people’s disinterest or, worse, their distaste.
It’s all about monitoring and managing every minuscule detail of how I show up in a space and with others. I seem to have subconsciously adopted the survival strategy of making sure to be perceived as a “normal human.” Not to mention the unspoken assumption that insists this be the most “pleasant” and “natural” version of “just like everybody else” possible.
There is a tremendous mental and emotional load in pulling this off. I feel compelled to plan each step, militantly establish and follow rules of engagement, and prepare the necessary social scripts to navigate everything from meeting a friend at a new cafe to advocating for care at a doctor’s office. There is a wide expanse of social interactions between and adjacent to those two examples, and each and every one requires the same immense amount of labor to manage.
There is no novel social interaction that doesn’t require rigorous planning and practice. Even familiar interactions may require repeated preparation, ongoing evaluation, and adjustment.
It’s… so… much… work.
And like so many hard-won survival tactics, it’s a brilliant strategy… until it’s not.
What I mean when I say I am disabled…
- Ableism is a bitch.
- My brain processes information and experiences the world differently.
- Holy accommodations!
Taking the term “disabled” and owning it has been difficult. Ableism is the air we breathe, so considering myself disabled feels like adopting an identity that does not, despite the evidence, match my idea of me. And not necessarily in a negative way… There is a certain inherent and gutsy confidence in owning “disabled baller” when “neurotypical failure” was where you started from.
Furthermore, but conflictingly, I’m so influenced by internalized ableism that I constantly compare myself to those with more “obvious” disabilities, viewing my differences and needs as lacking and unworthy of such practical labels and assistance. I wince and worry that I’ll be judged for using a term I can’t prove, because I don’t look disabled. I also don’t want people with higher support needs than mine to lose out on resources, or for their experience to be impacted or colored by any clumsy explanation or misunderstanding of mine.
It’s awkward, and I’m on unsteady ground. It’s territory I worry I’ll misstep or misspeak in and be chastised and judged for. But I am doing my best and I’m trying to take baby steps towards education, acceptance, and confidence.
Because the truth is, I am disabled, and just like Lady Gaga and Orville Peck, I was born this way. This is what I mean when I say that: Neurodevelopmental differences in my brain have rendered my ability to think, feel, learn, and perform specific cognitive and emotional tasks differently from the majority of other humans.
Since many societal, educational, and vocational structures have been designed to work best for brains that are neurotypical, there are social, intellectual, and professional activities I struggle with, and I greatly benefit from having specific accommodations. Without those, I can’t hope to perform anywhere near the same level of ease or proficiency that a neurotypical person can.
I hope to write more about this as I experience it in action, but I recently had the distinct pleasure of sitting down with the Office of Disability Services at Delaware County Community College. I worked with an advisor to draft a list of specific educational accommodations I will be granted while enrolled there.
It was hard to ask for what I needed, primarily because, up until now, I’ve simply dropped out of or avoided any voluntary educational experience. I have no practice asking for these helpful things, and before my many diagnoses, I would have been too ashamed to ask, because asking would have revealed how inept I was.
So, I muddled through the meeting, haltingly and sheepishly, advocating for myself while also allowing the advisor to make suggestions and point me in the right direction. When we were done, I looked at the list of accommodations and nearly wept. It was immediately apparent to me that if I had had these supports in my primary and secondary schooling, so much would have been different. I would have been spared so much fear and frustration. And what if I had approached college the first time with this level of support?
It breaks my heart to think of how much of my life feels wasted and lost. If I had known what was wrong, if I had seen what was in the way, and then been guaranteed the support to do my best… I think I could have accomplished wondrous things.
Maybe. Maybe not. But, oh my god, how excited am I to see what I’m capable of? Very excited.
What I mean when I say I am doing trauma work…
- What this means for my mind
- What this means for my body
- What this means for their intersection—my nervous system
I’ve been in therapy for as long as I can remember, but the majority of the work I have done since my early 20s has been pretty traditional talk therapy with a healthy dose of Cognitive Behavioral Therapy.
I’m not complaining, nor do I regret a second of it. If there is one thing I’m very good at, it’s talking about my experiences and feelings. I excel at a robust and thorough intellectualizing that mimics feeling my feelings, but lacks all the therapeutic punch and release.
While I’ve made very clear progress in the decades dedicated to this type of cerebral work, I have hit a wall. The work I want to do should no longer focus on thinking about my feelings, but on unlocking and processing them in a very deep somatic, emotional, and bottom-up sort of way. Truth be told, I have no idea how to do this. I’ve been working on it, though…
The first significant shift in my therapeutic life came when I began meditating in 2021. Meditation taught me that I could learn to tolerate big, hard feelings that I would previously have bolted from. It brought my attention to how my brain is constantly running from my heart and body. Sure, it was still thinking about thinking, but shocker, many unbidden and unexpected feelings can spill into meditation. Turns out, if you sit quietly with yourself long enough, things that you’ve steamrolled with high-octane avoidance and Olympic-level numbing can be revealed and unmasked like so many Scooby-Doo villains.
Over the past two years, I’ve shifted my focus to include polyvagal theory and aligned modalities like Somatic Experiencing (SE). Learning how my nervous system works jostled and upended a part of me that had believed I was hopelessly locked in a cycle of depression and despair. Spoiler alert: those were symptoms of a larger problem—dysregulation. SE, combined with meditation, started showing me that I might be safe, even if my body did not feel that way.
In the past year, I have taken a deep dive into Internal Family Systems (IFS), and very recently have begun Eye Movement Desensitization and Reprocessing (EMDR). IFS and EMDR feel made for each other, and without even trying, my EMDR sessions have turned into giant, buzzing family reunions for me and all of my inner children.
I have been habituating myself to the idea that safety is something you can create for yourself. Whether you consider it vagal tone, the ability to be vulnerable, heart rate variability, or the number of times you set a boundary, it may all amount to much of the same thing. To my mind, it’s no longer about talking about what happened; it’s about proving to my nervous system and internal protectors that I am capable of feeling the fear and pain of my past and surviving it. It’s about becoming your own safe space.
It’s hard, daunting work, but it’s gotta be done.
What I mean when I say I experience trauma and DysAuDHD* as a neurotype…
- Why my dyslexia looks the way it does
- Why my ADHD looks the way it does
- Why my autism looks the way it does
- Why my trauma looks the way it does
- Why my life looked the way it did
*Who am I kidding—There is no DysAuDHD Wikipedia page.
For the majority of my life, I believed that everything that was wrong with me resulted from the customary hex of “depression and generalized anxiety disorder.” They were my diagnoses. Hell, did they give shy, reserved, superficially well-behaved white girls diagnoses other than depression and anxiety in the ’80s and ’90s? I mean, I can’t imagine anyone paying more attention to me than they did. If it occurred to anyone else that these might be symptoms of larger, more pervasive conditions, they did not share it with me. And to be fair, I could not see it either. We can only ever work with the information and tools at our disposal.
Of course it turns out, I have a human brain that was sculpted into existence by dys-orders, autism, ADHD, and trauma. These conditions don’t just rest idly side-by-side. They mask and magnify one another. They weave together; trauma and neurodivergence are the warp and weft of the cloth I am cut from.
That said, the intersection of all these diagnoses and realities can feel murky at the best of times. Often, a person experiences more than one of these conditions, and they all present along a spectrum. Most commonly, dyslexics and autistic individuals also experience ADHD. I am amused by imagining ADHD as the common denominator of neurodiversity. What appears less common, and more at odds, is the co-occurrence of dyslexia and autism. But that’s where I will start…
One of the first books I picked up when I started learning about dyslexia was The Dyslexic Advantage by Brock and Fernette Eide. It gave me the distinct impression that if you were dyslexic, your brain was structured in a way that was wildly different from an autistic brain. The dyslexic brain, they said, has spacious clusters of neurons that support big-picture, top-down thinking. The autistic brain, by contrast, has tightly packed clusters ideal for detailed, bottom-up processing.
I remember reading that and naively thinking, “If I’m dyslexic, I can’t be autistic.” And honestly, my whole processing style backs this up. I am such an effective and dedicated big-picture, top-down thinker that it feels almost impossible to come at life differently. I don’t have anything close to the refined, detail-oriented bottom-up thinking that many autistic people seem to excel at.
In any event, sitting in stunned silence with both autism and dyslexia shaped me and colored my every experience. Navigating life without understanding why I was so utterly under and overwhelmed was demoralizing. I suspect everything felt so much worse because of rigid autistic thinking and fear of the unexpected and unknown. Likewise, I felt the displeasure and annoyance of the adults in my life because my ADHD comes with a whopping case of Rejection Sensitive Dysphoria.
Speaking of which, I totally resisted the idea that I had ADHD for so long because I was so deeply into routine, order, systems, patterns, and hacks. Even after my ADHD diagnosis, I marveled—I’ve never once missed a dose of Vyvanse.
Not long after that reveal, I read about AuDHD, or the joint expression of autism and ADHD. This neurotype illustrated how ADHD could look wildly different between people, but the other side of the coin/reality had not yet sunk in. This is just what the intersection of ADHD and trauma must look like, I assured myself. Good. Fine. Rigidly wrap that chaos up tight in some ritual and routine, and you’re good to go.
Early on, I wanted to learn more about the late diagnosis phenomenon in middle-aged women, so I picked up Neurodivergent Mind by Jenara Nerenberg. About midway through the book, Nerenberg presents a long list of autistic traits self-reported by middle-aged women. I could identify with more than three-quarters of them. Um, nothing to see here. Couldn’t I just keep assiduously ignoring the “Au” in AuDHD?
I eventually read Is This Autism? by Henderson/Wayland/White. These authors do a fantastic job advocating for a shift in the DSM diagnostic criteria to reflect the autistic experience of women and girls. I saw so much of myself reflected in these pages, but still I remained unconvinced. In the end, it was not Nerenberg’s list or even my growing familiarity with the DSM autism criteria that swayed me.
It was three unexpected associations from Is This Autism?–just three–that took my skepticism and transformed it into certainty. First, autistic folks are less likely to pursue higher education (✔️). Second, they are less likely to learn to drive, and when they do, it’s much later than their peers (✔️). And third, they are more likely to use comfort items, like teddy bears and security blankets, into adulthood (✔️). That was it. I read those three simple, unusual things–three things that were very sincerely true of me–and I knew.
Eventually, I felt a joyous satisfaction in realizing that so many of the intense fascinations and deep dives into beloved subjects throughout my life could be accounted for by ADHD hyperfixating and even autistic special interests. I have joked, in only a half-kidding manner, that the biggest hindrance to these devotions is my dyslexia. That still feels true, but it was even more accurate when I was a child. As a reluctant and weak reader, I struggled to gather and process information from books. I relied heavily on pictures, captions, and the magic of inference and gist. And so, I would always hit this frustrating and blurry limit to how much information I could gather and immerse myself in. I still do, but thankfully, my adult brain has more determination and stamina. And resources! The internet, with its search engines and bite-sized chunks of knowledge, made information so much more accessible.
Things were starting to make sense, but there was, of course, trauma to grapple with. So much of my initial resistance to accepting an autism diagnosis sprang from the knowledge that trauma is brain-altering in its own right. The Venn diagram of C-PTSD symptoms and masked autism symptoms has a very extensive middle ground, and I was camped out right there in the midst of it all. Which came first, the trait or the trauma? How could I know what was what?
Of course, the truth is that adverse life experiences can make your neurodevelopmental traits express more intensely, and unrecognized or unsupported disability can lead to more trauma. It’s like some wild and hungry ouroboros—trauma gnawing on neurodivergence, sinking its teeth back into trauma, and on and on.
I know that trauma rippled through me differently because of how I was wired. Because I was born with a brain that already struggled to connect and regulate, these early wounds just intensified into heart-rending and mind-boggling interference patterns. As a result, my nervous system is a finely tuned scientific instrument for detecting the disapproval of others. I am a human who is primed for relational trauma.
It’s utterly exhausting to live with a brain that’s constantly analyzing and a body that’s always in survival mode. Likewise, it’s frustrating that my top-down dyslexic thinking can make trauma work feel so confusing and inaccessible. I can make associations and think about my trauma, but I am unable to allow the novel bottom-up signals from my body and my nervous system through the gatekeeping of my intellectualizing. I can track and understand emotions and physical feelings that are in context, but I struggle to register and process unfamiliar and out-of-context messages from my body and even from my heart. The data is there, and it has an emotional tone, but I just can’t seem to get a grasp on it or let any of it go.
I knew it all had to fit together. I just could not see how. I had accepted I had C-PTSD. Eventually, I discovered my learning disabilities. It made sense that these things might be harder than the sum of their parts, but I could still not quite account for how much floundering I experienced, how much tension I exuded, and how ill at ease I always seemed to be. I knew other dyslexics who succeeded in school and careers. I knew people with ADHD who laughed about their scatteredness and still thrived in their lives and work. I knew others still with C-PTSD who dated, partnered, and built families. What was my goddamn problem?
Ultimately, my autism diagnosis was nothing short of a lifeline. It changed everything. The rigidity, the social difficulties, the avoidance of uncertainty and transitions, all the confounding details I could never quite reckon with were suddenly connected, and light shone through them.
The full scope of a person—their strengths and weaknesses, their inclinations and patterning—is layered like transparencies on an overhead projector. Each layer adds to the picture of one’s life and experience. For me, autism is the final sheet laid on top of all of the rest, suddenly revealing a precise, nuanced, and in-depth depiction of the human being that I am. No one layer makes sense without the ones below and above it. The entirety of my neurotype, what is me, can’t be seen or even understood without all the detail, subtle and magnificent, of each layer and condition viewed simultaneously. What a glorious thing to have been revealed.
Thank you for reading. There will be more.