There are projects and there are Projects. This morning while I made tea, I started to scrape more paint off the kitchen cabinets despite having no plan to begin today. I also had no plan to write this post today, and yet here we are. Finally. It has been a long time since I’ve written for this blog. It’s been so long that I don’t believe I can begin again without explaining:
The gap in my resumé.
The gap in these blog posts.
The gaps in my mouth left by pulled teeth.
Not all gaps are negative space. Not all gaps are actually empty. Sometimes a gap is really a cigar. Just kidding. But seriously, sometimes “gap” is the word our culture uses to demean and devalue certain types of labor, certain types of bodies, certain types of lives. Here “gap” is loaded with ableism, sexism, racism, sanism, and various forms of capitalist, white supremacist oppression that monetize and morally sort bodies and time. Some bodies can easily access culturally valued forms of labor. Others cannot. Some bodies create timely resumé bullets and steadily published blog posts. Other bodies can do one but not the other. Still other bodies can do neither or can only do one or both intermittently. Some bodies are entrepreneurial and turn hobbies into side hustles. Other bodies cannot cross the vast chasm between passionate interest and earned income (at least not without community and support).
The years I spent in school, practicing law, and working in mental and I/DD healthcare were considered “valuable,” not a gap, worthy of blurbs on my resumé. My body generated degrees, honors, billables, role titles, promotions. But the years I’ve spent at home caregiving loom large, a gaping blackhole that wants to swallow up and erase my prior education, experience, and expertise. Skills can allegedly be lost if disused. Within our culture, my nine full-time parenting years are a break, a hole. I’m supposed to carefully justify this emptiness in one line or less to assure potential employers this gaping mouth of non-work did not ravenously devour my worth as a worker. The devaluation of caregiving, especially when for one’s own family members. The dehumanization of those who require caregiving. The stigmatization of bodies and time that aren’t consistently growing the GDP and generating tax dollars regardless of whether there are systemic barriers to work. My gap as my own moral failure. I allegedly did not work hard enough for the past nine years for them to be worth a full description, a title, or any career capital.
Was it not enough of a blow that I was not paid for this labor? Apparently not.
Does it matter that I’ve worked harder caregiving than I ever worked before in my life? Nah.
And what of the three years since my last post here? What of this gap? Does my failure to create regular enough content devalue what content I have published here? Does it affect what I may publish in the future? The past three+ years have been overwhelmingly full, and my capacity for public writing has largely been put on ice, shelved away. Does that matter? Surely, I don’t owe potential readers an explanation, and yet the gap in this blog begs me to explain. Shall I resist that discomfort entirely and move straight back into content about Autistic trauma? Or is there some way to queer and reclaim this wide opening in between my words/worlds so that it might communicate?
And what of the gaps where I once had teeth? Well, maybe that is true negative space. But still, emptiness can hold and convey meaning. Those gaps in my mouth speak to me of: the poverty I lived in when those teeth were pulled, the more expensive solutions I could not afford, the sensory issues and anxiety, the ways my disabilities are woven into my relationships with both dentistry and money, the inaccessibility of appropriate and affordable dental and health care, and the ways both disability and past poverty continue to affect how I painstakingly triage and balance family needs, resources, and my own energy reserves. My missing teeth—gaps still unfilled by implants or bridges—are not irrelevant here even if they are tangential and perhaps only loosely symbolic. I believe the gap in this blog can also communicate something valuable and something about the calculus of our culture’s valuations: my body has intermittently published blog posts here because I am disabled and because I am an unpaid, under-supported full-time caregiver to disabled family members. Perhaps more specifically, I have only intermittently worked on this project because of the, perhaps individualized, mechanics of my Autistic monotropism and inertia.
Of projects and Projects.
This morning my partner got some news that put a soft deadline on my kitchen cabinet project. That deadline was what I needed to get restarted. Now that I’ve begun anew, it’s likely I’ll keep scraping paint and sanding wood until I am done (as long as I take ample breaks to rest my aging hypermobile hands). Writing this appears to be how I’m resting my hands although I am not sure my hand therapist would agree that typing is rest. I’m also writing because I said I would in my newly updated About the Author section, a blatant attempt to motivate myself through the painful process of building momentum to start a new routine and re-entering the vulnerability of public writing.
When we first moved into this house a year and a half ago (yes, we’ve moved house not once but twice during the Covid-19 pandemic, which is part of what’s kept me very busy and very tired and not writing here), I did several DIY projects around the house because I was still in my DIY house project mode after spending months preparing our prior home for sale. I’ve painted walls, baseboards, trim, cabinets, window sills, doors, a ceiling fan, and several door frames. I’ve repaired and retextured drywall and put up my first backsplash. I’ve updated lighting and hardware. I’ve carefully selected colors and textures to build our sensory nest. I’ve also searched for cheap, used furniture and navigated the pandemic impacts on Ikea shipping so we could have a couch with washable, replaceable covers. Eventually, I moved on to the outdoors and began to help garden, weed, rearrange rocks, and create a vision for bigger changes to the landscape. This work was seasonally driven, so a few indoor projects were paused midstream (like scraping paint off the kitchen cabinets). I moved on when I had to. I can do that, albeit I strongly prefer moving on when I call those shots about transitioning.
See, in my experience, a project can come and go. It may or may not leave a lasting impact on my mindbody. It may or may not be completed. It may be private or shared widely or shown only to a few. Furthermore, before I had a Project running constantly in the foreground, background, and everywhere in between, I could more easily handle multiple projects at a time. In law school, there were multiple courses and each course could be broken down into multiple mini-projects. I guess that wasn’t satisfying or balanced enough for me because I also needed creative nonfiction projects, songwriting, poetry, my dog, spiritual practices, special research projects, therapy, and decorating and fashion projects. Even my social life, family relationships, and dating life could be called projects for the purposes of discussing my capacity for negotiating multiple priorities.
But a Project like parenting? A Project like having three kids?? This is unlike anything else I have ever done. This is forever, days and nights, no bounds, and in my case, little help or respite. Also, I think parenting while Autistic is different or it has felt very different for me than the parenting life I see allistic parents living.
Riding a fixie and the Autistic parenting Project in three acts
At the end of my oldest child’s pregnancy, I gave a month’s notice to the law firm where I was an associate. I loved my job. But I would not be returning to work after the birth. I knew I would at least be home for six months or a year. I had chest/breastfeeding goals that tracked with that timeline, and I planned to be home full-time for that assumed-to-be brief season of life. I also knew I was privileged to have the option to stay home, and I was grateful. What I didn’t know yet was that we would have two more children in less than five years or that I would chest/breastfeed for eight straight years not one. I didn’t know I would have disabling Hyperemesis Gravidarum with each pregnancy rendering me unable to work and often unable to do essential daily living tasks without a caregiver. I had no idea I would be diagnosed with a heritable connective tissue disorder or that pregnancies would deteriorate my body in shocking ways. Most importantly here, I didn’t know that parenting would illuminate my monotropic mindbody with a brand new, big, bright spotlight. How could I have known this about myself when I began my childbearing years not knowing I was Autistic and having no exposure to the conceptual frame of monotropism? I don’t think I could have.
Before parenthood, I had a vague sense that I was better at depth than breadth, that I preferred uninterrupted serial projects to constant juggling, and that my gestalt conceptions only came into confidence after I felt a certain level of expertise with the details. The multi-subject nature of school worked for me thanks to a bit of a hack or mind trick where I developed cross-disciplinary relationships between subjects and amalgamated “school” into a single project. After all, it was all studying, all homework, papers, classes, and exams. To force a metaphor, I could ride through school using the single gear on my fixie of a mind bike.
I’ve figured out over the years that my mind works better in certain contexts than others, and I’ve been vested in sorting out the patterns of which contexts, or which terrains, best suit my fixie mind bike’s gifts and glitches. At one job, I was frequently criticized for being too slow and pressured to hurry up and stop researching before I felt finished. At another job, I was sought out for specific projects because others saw me as thorough, hard-working, and reliably detail-oriented. My same trait for meticulous depth located in two different settings: one led to complaints and micromanagement while the other led to praise, a niche, and increasing independence and responsibility. If you want speed or juggling a million tiny and unrelated tasks, I am not your human. But if you want accuracy, strategy, and tenacity on a complex project? I’m your person. Some may call this perfectionism or obsessiveness, but I’d say those are not nearly descriptive and inclusive enough.
Before having children, it never occurred to me to ask myself how this depth and details trait would function in the context of parenting. Further, it never occurred to me that having additional children would change the context of parenting in ways that meaningfully altered how this trait expressed itself. I honestly never saw it coming that a trait that had, in my prior view, largely only impacted my research style might impact my parenting. Wasn’t parenting more about how I did the related, connected, caring stuff for a child than how I thought? Yes and no. And honestly, the premise of that question reveals a fundamental misunderstanding I had about myself and my monotropism. I assumed this trait was purely cognitive and only relevant to the ways I engaged in intellectual labor. However, as I’ll dig into more below, monotropism is more pervasive to experience than being merely about “thought” in the sense of cognitive or intellectual endeavors.
After becoming a parent to our first child, very little else would fit in my life than my beloved, boisterous little baby. At an incredibly fundamental and embodied level, little else would fit on my project plate. This was absolutely nothing like law school where I was going to school, thriving there, and doing a ton of other projects outside of school as well. As a new parent, I could barely sustain a conversation with one other parent. And if negotiating chest/breastfeeding or other infant care (especially soothing), I often couldn’t handle speaking to others at all. Group play dates and events were a next level form of torture for me. Being around too many other people while actively parenting a baby overwhelmed me to the point of sweating, nausea, tremors, losing words, losing physical coordination, and stuttering through failing scripts if anyone dared talk to me. I couldn’t process anywhere close to all the input, couldn’t organize my output, and the whole experience completely overloaded me.
However, back then I had no vocabulary to explain my experience. I only knew I was struggling and maybe it was something like postpartum depression or anxiety but not exactly that. Without a vocabulary or a community that shared my experiences, I had no frame to understand or express, for example, the way the sound of people talking added to the sound of my baby crying was more than I could bear. I couldn’t begin to explain why the sensations of chest/breastfeeding were often all my body could handle and almost anything else, no matter how seemingly small, could send me over the edge: the way my clothes squeezed and rubbed me differently in my new postpartum shape, a tiny splinter of wood in my shirt, the neighbor’s dog barking, my partner sneezing, a strong fragrance, an unexpected siren, getting too hot or cold, a headache, and the list goes on. If only I had any inkling that I had sensory issues before I became a parent, I might have known to expect this new parent experience. I may have even had solutions planned. But the whole thing hit me like a silent, invisible freight train. I was shocked by how hard parenting a baby was for me.
So I was quiet a lot during my children’s infancies and a little extra withdrawn perhaps—aside from talking to my partner with whom communication has an ease I rarely experience with anyone else. Despite reading being my great passion and central to my life, infant parenting took so much focus and labor for me, I lost my capacity for reading. For the first time in perhaps my entire life since learning to read, the birth of my first child (and each subsequent child) meant going over a year without reading a single book. Unlike so many other parents I knew, I found it unbearably challenging to negotiate all the steps involved to get out the front door with a baby and the ways a last minute spit up or full diaper could dramatically alter the way time worked. I had a new dread of any appointment or deadline with a hard start or end time. Like so many new parents, I struggled to figure out when I was supposed to bathe, eat, brush my teeth, or exercise. The difference here for me seems to be that it took me far longer to figure out how to navigate those tasks than my allistic new parent peers. Adaptations that took friends a month or two often took me over a year. And while, sure, this got easier with each subsequent baby in some ways because “new baby” was a known entity, it also got infinitely more complex and demanding as well because it was “new baby plus toddler” and then “new baby plus two young siblings.” In many ways, each child has been a new, totally distinct Project and more often than I’d prefer, the Projects compete and pull me in three separate directions. Knowing how to engage my monotropic strategies in this context has been challenging. Synergizing academic courses was apparently more accessible for me than harmonizing my caregiving for three small humans. Returning to my metaphor, riding my fixie mind bike on this parenting terrain takes a whole lot of my energy. There are some big hills, and the roads aren’t always paved.
All that said, I want to be clear that there’s been one thing I haven’t withdrawn from during these years: parenting. No matter how great the challenges of parenting sometimes feel for me, my entire being has focused me on my kids with a raw sort of power, a hyperawareness of their every noise, movement, shift in mood, and need. This is not perfectionist parenting, far from it. I actually embrace the human error in my parenting as a chance to model healthy imperfection for my kids. Instead, I’m referring to my mindbody relying on the same monotropism that has so defined my life. I’ve allowed parenting to consume me, and I’ve resisted the largely allistic-focused articles and people telling me that my style of parenting was “archaic” or “too traditional,” “unhealthy” or even “misogynistic.” What these articles seemed to be missing and what I too spent too many years having no words to describe was that I, as an Autistic parent, needed this singularity of purpose and focus. I needed the fixed gear. Especially with multiple young children born close together, my monotropic mindbody has needed to be allowed to dive deeply into parenting and to do very little else.
In our family, my being home and intensely focused on the kids while my partner works for pay has precious little to do with being traditional and nothing to do with gender roles and norms. It has everything to do with understanding and intentionally building a life around our kids’ individualized needs that is balanced with my own needs and my partner’s needs. In this frame, my full-time, largely monofocused parenting has been less about preference and more about disability-related needs and accommodations. Less that I chose not to also work outside the home during the season of early childhood parenting and our adjustments into parenting one, then two, then three children, and more so that I personally don’t think I could have also worked outside the home during this season of life. I am sure that is not true for all Autistic parents, but I wonder if it is true for some others beyond only me. There are certainly some big questions here about privilege. Unfortunately in a culture that does not value children, caregivers, or anyone else who needs caregiving, not all Autistics will have the opportunity to experience monofocused parenting.
I need to go backwards though. I skipped an important step in this discussion, didn’t I?
For those who are new to the term “monotropism” in relation to autism, let’s back up and give a working definition. What is monotropism? It is a theory of how the Autistic mindbody works, and while neither monotropism nor any other theories about autism are likely to be inclusive of all Autistic experience given our heterogeneity, this theory has largely been embraced by Autistic people. Myself included. This lens appears to align well to Autistic lived experience and grants many of us a sense-making vocabulary when describing our experiences and needs to others.
To take the liberty of paraphrasing in my own words: monotropism, as widely discussed, is the Autistic experience of having a mind that naturally focuses deeply, intensely, and most stably on only one or a few things at a time such that other input is outside awareness. Monotropism is like having a fixed gear mind bike. It’s not that you absolutely can’t take a fixie on varied terrain. It’s the fact that you’ll be working extra hard on the hills because you can’t shift gears to make the bike assist you with the terrain changes. Taking your fixie on varied terrain will take more effort and be more exhausting than the same terrain changes would be for someone with multiple gears (or electric assist!). The fixie mind bike is thus at its best when riding on paved roads with limited terrain changes, i.e. focusing on one or a few things at a time.
Some folks believe monotropism is a fundamental theory of autism, meaning, I think, that they theorize all or most other Autistic experience is downstream of monotropism. Personally, I wouldn’t go that far. In fact, I’d hypothesize and argue based on my own experiences and observations of Autistic infancy that monotropism can evolve as a downstream adaptation to upstream differences in sensory processing and physiological arousal. Put another way, monotropism could be framed as an adaptation to assist in organismic arousal regulation in the face of overly hyperarousing, upregulating experiences (inclusive of both exterior and interior stimuli) or overly hypoarousing, downregulating experiences (also inclusive of exterior and interior stimuli) or perhaps even in the context of primary dysautonomia. Monotropism as a homeostatic or allostatic apparatus that has developmental implications and not simply monotropism as a cognitive or intellectual style. If that theory is accurate, then the intensity and/or pervasiveness of one’s monotropism might track to the intensity of one’s early life sensory and autonomic/arousal differences. But yes, then from there, we could theorize that monotropism might affect any number of aspects of Autistic development and experience, including learning and cognitive styles, motor function, as well as social-relational style. What? How is that possible? How could intensely focusing on one or a few things be more than a cognitive trait or connected to arousal regulation?
One possible mechanism I can envision here is monotropism as intense focus and flow states that are useful to the mindbody because they increase low dopamine, decrease high stress hormones, perhaps modulate high serotonin, and function akin to a dissociative tool that blocks out, modulates, filters, or fragments off stimuli so dysregulating that it threatens homeostasis / allostasis. A personal example may help. As a kid, I could spend hours playing with my Speak & Spell. It was pure joy for me and is probably why I was an A+ spelling student. This wasn’t simply about joy though, the good feelings from that dopamine rush were a bonus. For starters, my hyperfocus on my Speak & Spell filtered out the distress so many other kids and adults caused me, especially if they were experiencing a strong emotion that would inevitably leak into and flood my own body. From very early ages, I found people unbearably intense (based on my memories and my parents’ stories). I remember from early childhood how certain ways people would talk, look at me, move, smell, and emote would make my heart race, body heat up, face flush, breathing shift, body shake. I’d get a hyperawareness of how small, slow, and less coordinated I was compared to adults and many kids, and sometimes I would go into a freeze response. But the Speak & Spell stopped those things from happening because focusing so, so deeply tuned out all the overwhelming human input in my environment. That deep focus also mediated how my clothing, my own hair, other people’s perfumes, cleaning products, lights, or the sounds from my dad watching football created a sensory hell. In the car, I blocked out the ways the sound and vestibular input dysregulated me by using my Speak & Spell and doing a stim where I moved my body in time with guardrail posts, signs, and utility poles. I didn’t realize this as a kid, but I was regulating my body because the intense input was overwhelming and I needed to escape it if only inside myself.
Without the Speak & Spell, my stims, an engaging book, challenging school work, or singing along to a favorite song, the car was too much for me, our home’s overwhelming input was too much for me, and school was too much for me. Being me in my mindbody in the world day-to-day was too much for me. No child’s mindbody can exist in that constant state of overwhelm and threatened or complete dysregulation. Strategies of regulation develop fairly automatically. My mindbody adapted to the ways my environment threatened my homeostasis / allostasis by relying heavily on monotropism. This impacted the ways I developed, the ways I think, the strengths and struggles I have when I do work, the ways I parent, the ways I love and relate, and more. My monotropic dissociative regulation tools led to my monotropic development. Both relate to me being an A+ student in spelling and algebra and eventually becoming a lawyer because of the way my mind focuses, problem solves, and deeply digs into patterns and systems. Both also probably relate, in part, to my social, motor, and adaptive challenges. Those areas were frequently too far outside my monofocus to get as much energy and time invested during my childhood. As I aged, more balance naturally developed across areas of my life. I developed motor abilities when I fell in love with playing music, dancing, and playing tennis, but from PhysEd class to attempting basketball, there were a lot of swings and misses before I found the passions that dramatically shifted my motor development. I intentionally grew social and relational practices when I got passionate about studying psychology as well as when I realized I wanted to date. I will always have motor, social, and relational differences because doing these things at less typical ages and in a different order than allistic kids changed my life experiences and thereby changed me: my personality, my identity, and my way of being embodied and in relationship to others and environment. My developmental timeline was monotropic and thus also necessarily asynchronous.
In my case, the degree of monotropism needed for arousal regulation led to me developing hyperfocus as well as some derealization and depersonalization types of monotropic dissociative tools and not to more fundamentally fragmented or structural dissociation, something I’d like to call fragmented or structural monotropism. I can conceptualize scenarios where some early Autistic experiences require a more fragmented, structurally dissociative monotropism to develop in order to regulate arousal. I feel like I have read this in the accounts of several non-speaking Autistics where their mind focuses on parts before a whole comes into focus—parts of sounds, a toy, the visual landscape, their embodied awareness, a movie, time, memory, another person. A sensory stimuli may fragment in time from an emotion from a thought from language. Written language may fragment from spoken language. Here there may be repetition to aide in processing part-by-part until the whole is known or there may be some understandable refusal to do this labor-intensive part-by-part processing unless strongly intrinsically motivated. The former may appear as repetitive activity to the outside observer. The latter may appear to the outside observer as withdrawal or opposition. But both have very important purposes for the person living inside them because they’re part of a complex system of structural monotropism being used to maintain arousal regulation and homeostasis / allostasis. Here there may also be a more staccato version of developmental monotropism and asynchrony that extends developmental timelines far beyond what our culture has come to expect because again the development is happening one small part at a time, one fragment at a time until the whole is known and then the next whole is approached. Patience is of the essence not time.
I know that my oldest child’s sensory and arousal struggles have from birth been far more dramatic than my own, and this shows in the ways their monotropism leads to a more fragmented experience and more altered, dramatically asynchronous or “spiky” development. Their mindbody has to work far harder at arousal regulation and allostasis than mine does, which may also tie into their Glutamate-GABA balance and have a relationship to why they also have seizures. Where I need to be allowed to lead a minimalistic life and monofocus on parenting because the sensory and arousal challenges of parenting overwhelm my system and make regulation more hard won, my oldest child has needed to be allowed to monofocus on their individualized, multi-step process of learning speech, reading, and written language as communication to the exclusion of nearly all other expectations. We have massively minimized demands and expectations to hold years and years worth of space for communication development, including the exclusion of the expectation to tolerate the chronic sensory and arousal challenges of being in a school building, going on too many car rides or outings, doing non-language focused academics like math or science, making difficult personal care a non-flexible requirement, or having other big or small expectations in daily life. For one season, they work intensely on communication. For another, they work intensely on motor skills. For another, they work on creative play. There is some microshifting back and forth here but not much. And they communicate to us that their project plate is quickly filled. It would be unreasonable to expect our child to be able to do math, reading, history, science, motor skill development, adaptive development, communication development, and social development all side-by-side. It would be too dysregulating because it would deny them access to the monotropic dissociative tools they use to stay regulated. It would also be unnecessary. Their Autistic, monotropic, asynchronous, and highly individualized development exist in a body whose very existence is an effective rebuttal to rigid concepts of correct, right, “normal” child development timelines, orders, or the alleged synergetic dependence across areas of development. They did not require imitation skills or allistic eye contact to learn speech.
Similar to the way that forcing eye contact on someone who gaze averts to stay regulated is harmful, it is also harmful to force someone to not use their monotropic regulation tools. My monotropism is less fragmenting and structural and more hyperfocused, monofocused, and on rare occasions derealizing and depersonalizing. If these regulation tools are made inaccessible, disallowed, or otherwise discouraged, I can have meltdowns, shutdowns, quickly land in burnout, and generally will have more mental health struggles. For our oldest child whose monotropism is more fundamental, fragmenting, and structural, the costs of disallowing their monotropic regulation tools or development are greater. They may experience all the same deterioration that I do but also may have development plateau or regress, lose communication, lose their place in time. Theoretically, if (and this is a big “if” to me regarding Autistic development) critical windows for speech development are real, then disallowing monotropism during that critical window could have caused so much arousal dysregulation that speech may have been unable to develop. Here it is monotropic arousal regulation that is critical to speech development not eye contact, not imitation, not compliance, not allistically biased social communication developmental norms. While merely a hypothesis, I believe my oldest child can now somewhat reliably access speaking and emerging written language at age nine because we went with the flow of their monotropic, asynchronous development, allowed their use of monotropic dissociative tools because we saw it as necessary to their allostasis and arousal regulation, and radically minimized dysregulating stimuli and expectations. The regulation of arousal is too important to early life development to be compromised. No matter how atypical, what matters is that arousal regulation tools exist and succeed in arousal regulation. What doesn’t matter nearly as much as even regulation-informed experts believe is eye contact, imitation, prosody, gestures, and other allistically biased social norms. The human mindbody is creative enough to find new ways to develop, learn, relate, and connect even in the absence of all the latter. However, the mindbody cannot develop or learn in the context of chronic, especially early life, dysregulation of arousal and the physiological challenges thus posed to homeostasis / allostasis. There simply isn’t enough energy in the body left to learn, develop, be healthy, and grow.
My child and I both have Autistic fixie mind bikes but something substantial is different between us, so I am wrestling with how best to extend my metaphor to convey the distinction. Perhaps the best way to extend the metaphor here is to say that our terrain is very different. My terrain has some painfully steep hills, big potholes, and gravel here and there. Their terrain is more like a narrow backroad winding through mountain summits and canyons. Of course we can’t go a mile in the same amount of time! That my child’s mile takes longer than mine doesn’t tell us anything about how strong, agile, or endurance-capable we are compared to each other or anyone else. We aren’t riding the same mile!
Leaving the metaphor for a minute, sure, I can accept the proposition that we may all technically be living in the same physical world, but I also believe that we’re not all experiencing the same reality within that physical world because our embodied perceptions and experiences of the physical world can be quite different. My blue is not your blue. My hour is not your hour. My florescent light is not your florescent light. My autonomic nervous system is not your autonomic nervous system. Our felt, perceived, embodied reality is different. The sound of a siren across town may be a specific amount of decibels if we use a machine to measure it, but humans are not machines. My partner may not even hear the siren and may have no reaction to it. I may hear it and startle, which may take me a half hour to recover from fully. Our oldest child may hear it and have their arousal system entirely dysregulate, which may take hours and hours of our concerted, purposeful effort to bring back into regulation.
However I try to extend my metaphor to capture these concepts, the best vocabulary I have to help me qualitatively distinguish between our divergent experiences of monotropism is to borrow, as I have above, from the dissociation vocabulary in trauma science (i.e. hyperfocus and monofocus, derealization, depersonalization, or fragmenting and structural dissociation). I’m loathe to speak in terms of “severity” (and I worry that sometimes “intensity” sounds like a stand-in for severity), and yet, I believe it would erase my child’s experiences to suggest there was no difference in quality and intensity between our unique Autistic experiences.
I feel the need to add here that my borrowing from trauma vocabulary and conceptual framing is not being done to pathologize either trauma or autism but to conceptualize mechanism; perhaps some aspects of these mechanisms may underlie both for different reasons. Why conceptualize mechanism? Isn’t that like looking for a cause of autism? I don’t think conceptualizing mechanism is the same thing as looking for causation. I don’t think about mechanism to enable me to think of a “cure.” I don’t think about mechanism to further dehumanize us.
I think about mechanism: Because understanding mechanism can help us self-advocate for well-tailored, humanistic accommodations, interventions, and other supports. Because I believe better mechanism narratives can protect Autistics from coercive, unethical “interventions” like ABA (Applied Behavioral Analysis) that risk worsening our health and wellness on many fronts, including by going against the grain of our health-preserving arousal regulation mechanisms. (Arguably, some in the ABA world know this is a weakness in their armor as evidenced by shoddy attempts of ABA researchers to publish subpar psychophysiology research on Autistic arousal regulation, a scientific area outside the scope of education and experience in ABA.) Because opportunities for self-knowledge are meaningful in and of themselves. Because too many existing mechanism narratives are often used to dehumanize us (e.g. Theory of Mind) and also to frame us as having a difference in mere behavior or mere cognition, both of which are considered malleable to behavioral or cognitive-behavioral “therapies.” Because I care a whole lot about lifespan Autistic wellness, including Autistic infancy and childhood, and I believe that early intervention and special education as currently designed and practiced are too often robbing Autistic kids of integral regulation strategies like gaze aversion and monotropism, which creates cascades of problems that flow from iatrogenic chronic dysregulation. Because more than enough Autistics have lives and mindbodies that exist in direct contradiction to the biomedical myth about natural Autistic development that Autistic children never grow, adapt, develop, or change across their lifespan without intensive interventions; this myth is arguably grounded in misconceptions about mechanism, about what autism is. Because I believe it is inaccurate, nonvisionary, and allistically biased 1) to presume that a child will never develop or adapt while using regulation tools like gaze aversion and monotropism or 2) to denigrate developmental asynchrony and atypicality for Autistics but not for, e.g. “Gifted” children.
I know from experience that I grew up using gaze aversion to stay regulated, and I still went to college and law school, am happily partnered, and have kids despite the fact that I didn’t try to learn and practice eye contact social rules until college (not that any of those milestones should be necessary for someone to be valued as a human being because they should not. My point is to argue against the anti-Autistic, majority view that allistically normed eye contact is necessary for speech, social, relational, academic, and other areas of child development or achievement.). Furthermore, I am still monotropic as an adult, perhaps even more so, and I have a very full and fulfilling life. Additionally, my partner and I continue to observe that our oldest child makes more and more progress as we lean into and support their monotropic dissociative tools for regulating arousal and the likely downstream monotropic, asynchronous development than they did for the brief seasons when we pushed against these before we knew better. And most meaningfully of all, our child tells us they are happy and feel loved and safe.
Tying myself back into my prior misunderstanding of this trait, monotropism is not just about research, thinking, intellectual style, or cognition. Because arousal regulation mainly underlies and happens in the background of our other human functioning (autonomics are automatic), when we view early life-initiated monotropism as a homeostatic / allostatic feature, we can see how it can pervade all aspects of a mindbody’s experiences in a moment in time and across time, i.e. present moment sensory-perception, interest, focus, or attention as well as embodied awareness, self experience, relational life, and various lifespan developmental and learning processes. For some of us, we may continue to use monotropism to physiologically regulate arousal throughout our life due to arousal differences that persist from birth or before and throughout the lifespan. For others, the homeostatic / allostatic utility of monotropism may have ended in childhood after the autonomic nervous system and sensory system matured, and then perhaps the monotropic trait persisted because it was a well-known way of being in the world. I’m not sure whether I have always used my monotropism for regulation. It’s hard to be insightful about largely invisible, internal physiological processes. I imagine I did regulate via monotropism as a child and a teen based on my memories and my parents’ stories. However, my gut says it was less regulatory and more a comfortable, well known way of being through much of my adulthood until I hit parenthood when suddenly my monotropism was again trying to engage to regulate my arousal. Perhaps this was because my sensory and coregulation load were suddenly far higher and my own regulation far trickier to maintain.
When I first heard about monotropism in Autistic experience, the concept resonated effortlessly with my lived experience and reverberated through my collected memories processing everything through this new lens. Much like my initial experience of learning I was Autistic, so much made so much more sense. Monotropism also fits very naturally as a lens for viewing our Autistic children and plays a fairly major role in how we parent and how we do home-based learning.
I do want to say before moving on that while some who utilize monotropism as a narrative tool for understanding Autistic experience and shaping conceptions of autism seem unable to help themselves from tacking a deficit onto their definitions (i.e. unable to focus on anything outside their few interests or poor at multitasking), I apparently have more impulse control. I see little utility in framing monotropism as a deficit. I don’t know that I would frame it as a strength either. A fixie bike is neither archaic nor less sophisticated merely because its mechanical design is more minimalistic. It’s also not superior to all other bikes despite what some fixie lovers might say. A fixie has less parts that can break, less parts to replace, and less possible points of failure. A fixie is also extremely efficient and gives the rider more direct control over performance. The beauty of a simple, practical design.
However, monotropism is merely one among many potential styles of regulating, thinking, and being. One strategy isn’t absolutely superior to the others or necessarily more deficient than others even if some strategies are more common in our current culture, period in time, built world, and body of peer-reviewed research. Very nearly all strategies will have their context-dependent pros and cons. After all, a fixie isn’t the bike most folks would choose to ride on a muddy trail in the woods, and a mountain bike isn’t the ideal bike for (most) cities. How does that mesh with me analogizing different types of monotropism to riding the fixie on varied terrain? I am honestly not sure yet. Perhaps that extended metaphor doesn’t hold. I know I will keep thinking about it.
Some quick-and-dirty physics of Autistic parenting
If “monotropism” was a superb sense-making tool and a wonderful new addition to my vocabulary, “Autistic inertia” was at least an order of magnitude more impactful. I am indebted to all the Autists who have written about inertia. Thank you.
The Law of Inertia (Newton’s first law) tells us that:
- an object at rest will stay at rest and
- an object in motion and moving in a straight line will stay in motion and moving in a straight line
unless the object is acted upon by a force.
If an Autistic person is at rest, they’re likely to stay at rest unless acted upon by a force.
If an Autistic person is in motion in a straight line, they’re likely to stay in motion in a straight line unless acted upon by a force.
Weaving this together with the concept of monotropism, if an Autistic person’s monotropic mindbody is focused on a project (or a Project), they will stay focused on that alone unless acted upon by a force.
But in the context of Autistic experience, what is rest, what is motion, what is a force, and what on earth is a straight line?!
I cannot speak for all Autistics here. I won’t even attempt to try. My end goal here has been to explain why I haven’t been writing in this blog for a few years. I am simply taking the scenic route to get there. My lived experience is salient. I hope it may serve to meet my end goal while simultaneously serving as a cool example of how Autistic inertia and monotropism can work in concert.
For me, the “rest” aspect of inertia encompasses more than sleep, relaxation, not working, quiet, or stillness. When I am talking about Autistic inertia, rest is a state of having no fixed schedule, deadlines, specific goals, or reliance on fixed routines. To the contrary of biomedical autism narratives that describe us as dependent on routines, I can easily exist in this state of rest or perhaps more aptly “no routine.” As long as I have ample space and time to remain in this rest mode, it can be a joyful and peaceful state. In this mode, I go with the flow. I can be more spontaneous, flexible, and responsive to a dynamic environment. For me, rest mode works well while I am parenting. As long as I stay in rest mode, I can be flexible and responsive to the sometimes compounding and competing needs of three small children. I can turn the three human projects into the unified parenting Project. In this rest mode, the kids are not a force that ends my rest or pushes me off in other directions in motion because here rest includes being responsive to them as their needs arise. Of course, sometimes rest mode is actual rest but not solely. And sometimes life (usually a force originating outside our household) presents a force that acts upon my mindbody at rest and demands I set myself into motion, e.g. doctor’s appointments.
In this Autistic inertia context, “moving in a straight line” means more than literally moving my body in a straight line down the hallway. It also means more than the simple presence of mental or physical “motion” or energy expenditure. Here “moving in a straight line” is analogous to my routine mode or phrased alternatively my goal-driven mode or my mind laser (yep, here is another fun, forced metaphor).
In this state of intentional straight line motion, I have a schedule, deadlines, goals, lots of structure, and fixed routines. If I were to draw a model of my routine mode, I imagine it would look a lot like a body moving in a straight line or a laser exciting atoms and shooting photons forward in a highly concentrated, precisely directed beam. And once I am there, I am fixed into this straight line, fixed in this routine mode, hitting my target. I won’t stop functioning in my routine mode unless a force acts upon me.
When my straight line motion routine mode and my monotropism meet in space-time, it’s a little intense. I can be intense. So much so that I’ve found this mode to be largely incompatible with parenting my specific kids when they’re home with me full-time. I may be so focused on my project and rigidly set into my straight line motion that I literally don’t hear the kids asking me to make them lunch or my partner telling me we won the lottery. Alternatively, if the kids asking for help functions as a “force” that stops my straight line motion, things can get. . . complicated. More on that shortly.
In contexts where project complexity and hard deadlines are elements and intense, deep focus is needed, this powerhouse combination of monotropism and Autistic inertia can be extremely helpful. However, in contexts where there are multiple projects and Projects happening all at once and forces stopping and starting rest and motion, it’s a lot more tricky to have a fixie mind bike that shoots lasers.
I don’t remember with certainty when I started using the “laser” metaphor to explain the way my mindbody works. I think it came up the first time I was trying to support a parent friend whose tween child is a bit like me. I needed a memorable image to communicate to her what her child was experiencing, and mind laser popped out. Why a laser? I don’t know. Perhaps because of a research project I did in the 5th grade (circa 1987) about laser eye surgery. I’d been so fascinated by the idea of lasers being used for surgery that I’d been reading everything I could find about them. Then my mom helped me take the research further. She took me to a laser eye center where I had the chance to interview the doctor and get a tour of the laser eye surgery facility. The power and precision of the laser in this context utterly captivated me. It felt like science fiction in real life. However, this being a project meant I learned all I could, wrote about it, and then moved on. I turned my own mind laser towards a new target.
When I am very intentional about where and how long to point this mind laser, I can often get a lot done. However, I don’t have a great handle on how to power it down, so if for some reason I lose touch with this careful, intentional, straight line motion, i.e. a force acts upon me, then my mind laser can become more destructive than productive. It can point here, there, anywhere, e.g. overly frequent interruptions can lead to struggling to complete projects and starting dozens of projects with no end in sight. It can burn me or someone else, e.g. meltdowns about interruptions. If left to its own devices and not very intentionally directed at goals, routines, and deadlines, it often automatically takes up the work of risk and threat assessment, which can admittedly increase my baseline anxiety levels exponentially. This is a big problem if I am in a context where I rarely have space and time to get into routine mode and stay in routine mode to goal completion. In contexts where I’m trying again and again to start routine mode but forces keep acting on me and stopping that motion, the straight line motion can keep trying to restart before I have intentionally chosen its direction. Here it’s not so much that I’m in straight line motion and a force puts me at rest and more that the force shifts the direction of my straight line and now instead of a straight line I end up with days that look more like a toddler had fun with an Etch A Sketch. Every chaotic little line and squiggle represent a risk and threat assessment rabbit hole I fell into. Those aren’t irredeemable, by the way. I’ve managed to leverage my anxiety rabbit holes into research and creative work before, and I think that helps me feel a lot more peaceful for some reason.
So it’s not that I am unable to be flexible and go with the flow.
I can be in rest mode and thereby be flexible, responsive, and spontaneous.
And it’s not that I am unable to accomplish complex goals, complete multiple projects, and meet deadlines.
I can be in straight line mode and thereby use routines and deadlines to meet goals.
It’s really that I struggle to shift back and forth between being at rest and moving in a straight line, especially if this state change is required frequently.
I do best when I have space and time insulating me from transitional forces acting upon me and am able to remain in one state or the other as consistently as possible.
Furthermore, when moving in a straight line is preferable to chaotic motion, I (like most humans regardless of whether Autistic or allistic) do best when my straight line motion is insulated from transitional forces and chaos, e.g. chronic interruptions.
And that’s the rub, really. For me, parenting three kids is a rest mode Project that never gets to power down, and I don’t exactly have a firm understanding of what to do with my mind laser while I’m in rest mode, so my baseline anxiety is higher than usual. I don’t have space for many other projects, especially not projects that require straight line motion. At least thus far in my life, research and writing have largely involved my straight line motion routine mode. Rest mode can sometimes offer up a poem, song, email, tweet, or story, but it’s intermittent and not at all researched or making use of important citations. Maybe I can learn to write for this blog in rest mode. Maybe I am doing that right now. However, that wasn’t my vision for the type of writing I wanted to host here.
For most of the past three years that I’ve not been writing for this blog, I have been parenting full-time in rest mode and insulating myself from outside forces or using my precious little time in straight line motion mode to help my partner find a new job, relocate our beautifully complex little family, sell a house, buy a house, and like all of us, navigate a once in a century pandemic. I know I am not done with this blog project yet. I feel patient with myself and hope anyone reading here can also have patience with me. I am keenly aware that my kids have been growing all this time and that won’t stop. Kids grow up. Change is the constant. With my youngest about to turn five, I may well have new doors opening in my life next year. And I’m pretty excited.
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