(image description: close-up photo of driftwood with shadows on it and a piece of grass. text reads AU with an exponent of Tr, meant to indicate how trauma impacts autism exponentially)
Content Warning: To help me back-up my points with other sources, I am citing sources that medicalize and pathologize autism and posttraumatic stress injuries. Also, this post will address the abuse of autistic children and has other mentions of childhood traumatic experiences such as neglect and abuse. Please read with caution and take good care of yourselves.
As I was finishing up the audiobook version of Dr. Bessel van der Kolk’s “The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma,” I had another moment of shock and awe. I had to go find my physical copy of the book and re-read this line:
“Most teachers we work with are intrigued to learn that abused and neglected students are likely to interpret any deviation from routine as danger and that their extreme reactions usually are expressions of traumatic stress. . . . Teachers’ perspectives begin to change when they realize that these kids’ disturbing behaviors started out as frustrated attempts to communicate distress and as misguided attempts to survive.”
p. 352, “The Body Keeps Score,” (emphasis mine).
The word “ROUTINE” hung in the air around my noise-cancelling headphones and lit up like a neon sign. These words kept blinking at me, reverberating:
deviation from routine, danger, traumatic stress.
And then, of course, my mind shifted the list:
Routine, Familiarity, Change, Transition, Danger, Threat,
Traumatic Stress, Autism.
I tried to look up “routine” in the index of “The Body Keeps Score” in case I had accidentally missed other mentions of this concept earlier in the book. However, the term was not included in my copy’s index, and I couldn’t think of another mention of “routine.” I tried a few quick internet searches for variations of: Bessel van der Kolk, trauma, and routines. But nothing jumped out at me. I will dig more later.
As currently delineated, reliance on routines and sameness is a defining characteristic of autism. Under the DSM-V criteria for an autism diagnosis, part B, section 2 reads:
“Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).”
Under the brand new ICD-11, the criteria are said to mirror the DSM-V criteria while retaining more general flexibility and room for cultural variation (for more info on the ICD-11 autism criteria you could read here or go here for a look at the general evolution of autism diagnostic criteria including ICD-11). If you’d like to read an example of the contemporary conceptualization of autism and need for routines, you can read the section of this post titled “Routines and resistance to change.”
Both formal diagnostic systems, DSM and ICD, capture the autistic traits of adherence to routines, sameness, the familiar, along with difficulty with change and transition. This area of autism’s conceptual framework is sometimes discussed as “restricted repertoire” as in ICD-10 language or “restrictive, repetitive patterns” as in Part B of the DSM-V criteria. While the social communication and reciprocity disability is currently viewed as autism’s primary manifestation, especially if you look at the construction of the DSM-V criteria, this second area of restriction, routine, and sameness is just as elemental.
The offhand mention of routines towards the end of “The Body Keeps Score,” quoted above, was the first time I had heard that childhood trauma survivors also struggled with deviations from routine. If anyone would know, it would be Bessel van der Kolk. Despite some recent controversy, he is a bastion of respected information about developmental trauma. Even more interesting for me, this was the first time I had heard someone frame the response to a deviation in routine the way I saw it–as a traumatic stress response. I don’t believe it matters whether we are talking about complex trauma or autism or both, the intense difficulty someone has when a routine is broken is a traumatic stress response. At least, I hypothesize that on a psychophysical level, the chemicals, hormones, and neurological reactions set in motion after a routine deviation are the same regardless of the diagnostic label.
What is this reliance on routines really about? If breached routines cause traumatic stress, does that mean the best way to help those who rely on routines is to put all possible energy into preserving and respecting routines? Well, yes and no. I’ll talk more about that below. Is there something underlying or otherwise significantly related to the reliance on routines and sameness that might grant us insight? I think so. Perhaps understanding why some of us lean on routines and sameness might lead to alternative ways of seeking support as self-advocates as well as new ideas for those supporting people who struggle to cope with deviation from routine, the unfamiliar, change.
Because let’s be honest, life as we know it cannot always, 100% of the time, hold to stable routines, familiarity, and permanence. No matter how much I might want that, it just. . . isn’t possible. That means flexibility and resilience to change is a good thing, right? One day I should branch out my research and dig into the neuroscience of resilience. The psychoneuroimmunology of resilience sounds quite fascinating assuming it exists. Until then, I’m still holding change as a likely, albeit extremely hard for me, fact of reality and existence. Many thanks to the Taoist study of changes and to the Buddhist doctrine of impermanence. And thanks to Heraclitus as well:
“Panta rhei” — “Everything flows” — “All things change.”
I can definitely get fixated on my routines. I prefer driving on the familiar road even if it will take me longer to get to my destination. If my familiar road is not accessible, I may just not leave the house. I prefer ordering the same food at a restaurant if I already know it is good. I like to build familiar rhythms into my days. I prefer using the same grocery store and even the same checkout line or employee. And if I create a plan and believe it is concrete, then any last minute changes to that plan cause me a lot of distress. Why?
In my experience, my reliance on routines and sameness comes back to a more discrete issue: the felt experience of lost control triggers my traumatic stress and fear response. By felt experience of lost control, I mean that moment when my mindbody registers a strong awareness of a particular change, the change that happens when I felt I had control and suddenly I feel I have lost control. Routines and sameness are all about me trying to use external order and organization to try to avoid that experience–and to avoid being surprised by any other triggers as well. If someone has a lot of triggers, these systems, routines, and rules of avoidance can become very elaborate and complex. If someone has even more triggers, triggers extremely common to daily life, and/or even less inner awareness of exactly what the triggers are or how to avoid them, then their world can become extremely circumscribed. While not typically framed this way when talking about autism, I see all these strategies as avoidant-type, trauma-motivated patterns of living, adaptations built originally to try and keep the person safe from further traumatic experience and/or safe from having so many traumatic stress responses when met with triggers.
Routines, repetition, plans, and the preference for the familiar over the unfamiliar all lead me to the feeling that I have some control, to a feeling of greater safety. The reality may well be that change is constant, everything is impermanent, and my comfort with an experience of felt control is probably an illusion my mind creates to help me move through my days. But gosh, that illusion of control is just so, so comfortable! There is a nuance here I would like to mention, a hack my mind has found over time. If I can exist in a state where control can’t be lost because I accept that control doesn’t actually exist, steady-state lack of control is not triggering for me the way felt loss of control is. If I can find a flow state and remain aware of impermanence, change, and motion as constants, then I don’t need my routines or repetition or sameness. There is some space that opens there, but it is space I have not been able to occupy consistently. It is a practice not a destination, I think, and it’s a practice that helps me.
Rewinding my tangents a bit. Why would loss of control be a trigger?
Well, I think that question comes back to the sense of agency and power and back to the injured sense of agency and loss of power and control that happen during traumatic experience. Whether this is specific only to chronic, complex trauma or is the nature of all traumatic experience, I do not know.
Bessel van der Kolk does a good job with this topic, so I’ll defer to his words here:
“‘Agency’ is the technical term for the feeling of being in charge of your life: knowing where you stand, knowing that you have a say in what happens to you, knowing that you have some ability to shape your circumstances. . . .
Agency starts with what scientists call interoception, our awareness of our subtle sensory, body-based feelings: the greater that awareness, the greater our potential to control our lives. Knowing what we feel is the first step to knowing why we feel that way. If we are aware of the constant changes in our inner and outer environment, we can mobilize to manage them. But we can’t do this unless our watchtower, the MPFC [Medial Prefrontal Cortex], learns to observe what is going on inside us. . . .
If you have a comfortable connection with your inner sensations–if you can trust them to give you accurate information–you will feel in charge of your body, your feelings, and your self.
However, traumatized people chronically feel unsafe inside their bodies: The past is alive in the form of gnawing interior discomfort. Their bodies are constantly bombarded by visceral warning signs, and, in an attempt to control these processes, they often become expert at ignoring their gut feelings and in numbing awareness of what is played out inside. They learn to hide from their selves. . . .
People who cannot comfortably notice what is going on inside become vulnerable to respond to any sensory shift either by shutting down or by going into a panic–they develop a fear of fear itself. . . .
Suppressing our inner cries for help does not stop our stress hormones from mobilizing the body. “
p. 95-97, “The Body Keeps Score.”
Being In Charge of Your Own Body
That is a lot to unpack. First, I want to focus on agency as a felt sense of being in control of your self, your body, and your life.
In the case of abused and neglected children, we can probably each imagine a horrific circumstance where a child’s traumatic experiences involved the lost control over their body. Whether that was a sexual abuser taking over control of a child’s body or a caretaker neglecting a toddler who was not in control of their own body’s needs being met, child abuse, neglect, and exploitation all involve the child not being in control of their body and experience.
Loss of power and control are central to traumatic experiences of all kinds. When a natural disaster strikes, there is a loss of power and control. When a huge corporation contaminates your drinking water and fails to clean it up properly, there is a loss of power and control. When a rapist attacks a victim, there is a loss of power and control.
If we define traumatic experience based on the loss of power and control over our bodies and experiences, we could look at contemporary childhood as a whole and say it is a type of traumatic experience on its face. There is an inherent loss of power and control for children living under most mainstream, contemporary parenting and educational styles. How many parents ask their infant whether it is ok to change their diaper versus just taking control of the baby’s body and changing their diaper? How many parents ask a toddler whether they want to go to preschool versus sending the child to preschool because it is the way they were raised, the way their friends are raising their kids, as well as a financial necessity under a capitalist system? (For more on communicating with infants during diaper changes, you could start reading more here, and if you want to learn more about respectful parenting, you could start here. You could also learn about childism here). I am not aware of anyone suggesting that we are seeing traumatic stress injuries in every child raised today, so there are resilience factors at play, like healthy attachment, serving to help kids cope with their lessened agency during their early life.
Even if those concepts about respecting children as full people are a little hard for you to wrap your head around, let’s talk about autistic children and whether or not they are in charge of their own bodies. Let’s explore whether autistic children have more or less control and agency over their bodies and experiences than neurotypical, able children.
When your body is stress reactive, hypervigilant, you may do things that are unusual or sometimes even dangerous. It is not something within your conscious control. It is a biological, stress-mediated reaction or an attempt to manage and mediate a traumatic stress response.
Maybe your autistic body experiences traumatic stress and you try to run away in a busy parking lot. Your parent grabs you and holds you extra tightly. The parent’s intention is to keep your body safe, but still your agency has been ruptured.
These types of physical “interventions” are arguably much more common for autistic bodies than non-autistic bodies and thus so is the chronic, persistent experience of lost agency and lost control.
Maybe your autistic body experiences traumatic stress and you start hitting and pushing your sibling. You did not process the verbal instructions to stop hitting and pushing fast enough for your parent’s satisfaction. Your parent opts to force your body to remain in time out or maybe opts to physically restrain your body. The parents’ intention was to keep everyone safe, but still your agency has been ruptured.
Data on the use of restraints in public schools shows us that disabled bodies, often autistic bodies, are far more likely to be physically restrained in schools than able, non-autistic bodies. While I would imagine this is also true in family homes as well, I haven’t seen data specific to that question.
Maybe your autistic body spins in big circles around the room, flapping your hands around and around while making loud noises to meet your sensory needs and keep your traumatic stress response mediated. Your parent is ashamed and embarrassed by how differently your body inhabits space and wants you to look and move and sound like a non-autistic child, so they try to use the “behavior plan” and cue you to have “quiet hands.” When that doesn’t work and the parent’s own traumatic stress response gets triggered, perhaps caused by fears and memories related to their own bullying and childhood abuse experiences because they were “too weird,” the parent spanks/slaps/hits/holds/hurts your body until it stops spinning and flapping.
Maybe your autistic body is happily lining up a set of toy musical instruments in a spectacular design on the floor. You don’t think to tell anyone that you are imagining they are a beautiful castle and you are a dragon. Your dragon name is Gusto. Someone sees you lining up toys again and takes them away with frustration and a little rage vibrating in their body. Their movements are fast and sharp and scary for your body. It feels extra scary that their body is sharp but they have put a smile on their face, so you avoid their eyes. They tell you that your body isn’t playing the “right” way. “Musical instruments are for making music not lining up.” They decide to show you and start making tons of noise that hurts your ears and sets your whole body on fire, like a storm, maybe lightning. When you cover your ears to avoid the mounting sensations–the racing heart rate, the inability to breathe, the tension, the inability to find the words to beg them to stop the noise, the lost control–they get more frustrated with you. They force you to take down your hands. They force your body to sit down in a circle to participate in their “play,” their “song.”
In school, your autistic body has sometimes been tied to a desk because disability-related mechanical restraints are still legal in your state and there aren’t enough teachers or aides to follow you as you move around the room to learn. They say you are a distraction. They say, “one way or another, you have to stay in your seat.”
Or maybe your autistic body had a meltdown in class after lunch, a delayed reaction once you started to process your feelings along with all the auditory and other sensory information from your memories of the other kids bullying you while you ate. You are too upset to explain. You are too upset to breath. Your body tries to hit and break the way you wished you’d fought back as the kids hurt you. You’d just been frozen solid then, but not now. Now you were the rage beneath the melting glacier. Nobody cares why you are upset. They are blaming you for being destructive again. The teacher puts your autistic body in a seclusion room for hours.
In occupational therapy, your autistic body did not quickly process the instruction to clean up your drawing supplies. The room is so full of bright, busy-looking new toys that you can’t help your excitement. You were already headed towards the next activity when, without even verbally warning you the touch was coming, the therapist maneuvers your body back to the drawing supplies. The therapist then uses a “hand-over-hand” technique to force your body to pick up markers and put them in a bin. Startled by the sudden touch, your body is pulling away, trying to escape the touch, your words are stuck because of your stress and fear response. But the therapist’s bigger and stronger hands are holding on to your hands, not letting you get away, all while the therapist’s mouth is singing, “Clean up, clean up, everybody, everywhere. . .” as you cry.
These lists could unfortunately go on and on. They are hypothetical but not.
These scenarios are reality for so many autistic children and adults. Autistic bodies have precious little agency and control. Autistic bodies often act and look differently from allistic bodies, and yes, sometimes autistic bodies do need respectful physical assistance, for example, to ensure safety. But there is so little respectful assistance and so much traumatic policing for autistic bodies. There is so much normalization of breached agency for autistic bodies, especially autistic children who also suffer due to childism, and so little autism-specific talk I have encountered about how to minimize the rupture of agency, work to repair attachment and safety after such ruptures, and maximize agency, choice, and control. For legions of reasons, some possibly valid but most invalid but entrenched, autistic bodies are under the near constant regulation of other people’s hands, words, mechanical restraints, and other forms of control and coercion.
In my mind, there is absolutely no universe wherein that level of persistent, enduring loss of power and control, that chronically ruptured sense of agency, could be anything but traumatic. So it is no big surprise to me that both autistic people and survivors of more traditional examples of complex trauma have altered interoception as well as other shared spectrums of experience.
I first heard about interoception last year when information was circulating about autistic people having altered interoception. Here is a short info-video on this topic if you want to learn more. I apologize that this video requires the ability to read text and that it opts for person-first language over identity-first language.
I honestly did not realize that a lack of interoception was also a noted characteristic in complex trauma survivors until I was doing the introductory 20-hour training for Trauma Center Trauma Sensitive Yoga (TCTSY) last month. We spent a good bit of time learning about interoception. “Clinically speaking, the primary aims of TCTSY are to restore interoception, agency and the capacity for effective inter and intra-relational action.” Quote found here).
The video above already addressed this if you were able to watch it. Still, I also want to address this in writing:
What IS interoception??
“This is our internal senses. Any sensations that originate from within the body, like the feeling of hunger and thirst, sickness, sleep, heart rate, the feeling that one needs to use the bathroom, and managing your emotions proactively all stem from the sense of interoception.”
If we mine the Wikipedia page on interoception a little further, we can read a brief intro about PTSD and interoception:
Functional neuroimaging studies have shown that posttraumatic stress disorder (PTSD) patients exhibit a decreased activation in the right anterior insula, a region of the brain that is largely responsible for identifying the mismatch between cognitive and interoceptive states. Further, because PTSD patients have shown decreased activation within many nodes of the lamina I homeostatic pathway—a pathway through which the thalamus sends interoceptive information to the anterior insula and anterior cingulate—it has been suggested that PTSD patients experience reduced interoceptive awareness.
We can also mine that wiki’s discussion of autism and interoception:
“Patients with autism spectrum disorder (ASD) may have poorer interoceptive awareness than [control] subjects. It is hypothesized that this decrease in interoceptive accuracy is due to alexithymia, which is often associated with ASD. However, it has also been found that children with ASD actually show greater interoceptive sensitivity than [control subjects] when measured over a long period of time. Further investigation into the relationship between interoception and ASD is needed in order to fully understand the interoceptive aspect of the disorder.”
Additionally, this research abstract states that:
“The anterior insula is involved in interoceptive, affective and empathic processes, and emerging evidence suggests it is part of a “salience network” integrating external sensory stimuli with internal states. Network analysis indicates that the anterior insula is uniquely positioned as a hub mediating interactions between large-scale networks involved in externally- and internally-oriented cognitive processing. A recent meta-analysis identifies the anterior insula as a consistent locus of hypoactivity in autism.”
So it looks like the anterior insula is likely involved in our interoceptive sensory experience.
It also looks like the anterior insula shows decreased activation in posttraumatic stress injuries and hypoactivity in autism. (I hope I can safely assume that decreased activity and hypoactivity. . . are the same thing.)
And going back up to Bessel van der Kolk, “Agency starts with what scientists call interoception.”
I feel safe hypothesizing that there is some variety of lost sense of agency in both autism and developmental trauma (a belated note that I use complex trauma and developmental trauma somewhat interchangeably). However, this is a pretty huge question and will require much more research.
I would hypothesize that there is something almost circular happening here. Whereas van der Kolk is saying that interoception must happen in order for agency to happen, I believe agency must happen in order for interoception to happen. When our sense of agency is not able to develop or is stalled in its development because a child’s power and control are taken away, then there are likely downstream impacts to interoception. Why would that be true? These impacts to interoception could be viewed as a survival adaptation–a means to cope with unbearable internal states of pain, distress, and traumatic stress. Interoception might turn off or perhaps stop developing and plateau, or even regress. I’d imagine there is variation here based, at least in part, on the age of the child when the peak of traumatic stress is reached. Whatever the case, turning off/down activity in the anterior insula could be a mechanism to assist a body in surviving otherwise unsurvivable, enduring internal states of traumatic stress, pain, distress, and/or fear. In my mind, that is almost like a form of deep brain dissociation. The cost of that survival adaptation would come in the dangers of not having well-functioning interoception and thus of not having a clear, complete sense of agency as discussed by van der Kolk.
What do I make of the situations mentioned by the video and Wikipedia info above where some autistic people seem to be hyper-aware of interoception versus hypo-aware of interoception? I’ll need to read more and think about that. It does make sense to my personal lived experience. I feel like I experience an almost bizarre mix of lacking interoception and having super intense interoception. I’m really not sure why or how that works, but I am curious about it and want to learn more over time.
I also want to come back soon and start to work through the high frequency of alexithymia in both autistic and posttraumatic stress injured persons.
For today, I want to try and tie all this information on interoception and agency back around to ROUTINES. Can you even believe that is where we started? I can’t. I’ve nearly lost my own train of thought!
Put a Bow on It: Routines, Agency, and Interoception
What happens when you lack a sense of agency, have poorly functioning interoception, and thus lack an internal locus for your sense of self, safety, and security? What happens when your internal state awareness isn’t working well or super reliable, and you experience your body as unreliable?
You might start to lean on the world OUTSIDE. And you want that outside world to be reliable. You can find yourself leaning hard onto that need for external reliability and familiarity. And if that falls apart too, if that outside world starts to seem just as unreliable, unfamiliar, and unsafe as your inside world? Well, that might be a big time trigger for traumatic stress.
We all crave a sense of safety. At some point, I’ll write about what I’m learning from Stephen Porges’ Polyvagal Theory about safety. He’s central to this piece, but we have enough to cover in this post.
When we have not had control and agency over our own body and experience, it can be extremely hard to feel safe inside our bodies. We still crave safety. Some of us will try to build safety outside ourselves via predictable routines, familiar people, known foods, favorite shirts, extensive planning, or engaging in the comforts of a repetitive movement or vocalization that are familiar to us. Aren’t we super creative?? I think it is amazing that autistic bodies can come up with so many unique, heterogenous adaptations.
How to Start Helping Someone Who Lacks Agency and Interoception
So you’re learning something from all this. It is taking a little time to turn all these pieces of information around in your mind. But some of the things I’ve said or shared have made an impact. Now you’re wondering how you might better support and care for yourself or for the people in your life who lack a sense of agency and have poor interoception.
First and most fundamentally, in my opinion, you can support us by not chronically rupturing our agency and control over our own bodies, timelines, and experiences. You can revisit and deeply review whether you give us authentic choices, control over what happens to our own bodies, time, and experiences. Do you reward us with faux agency and then transition us back to a reality where everyone else controls our bodies, time, and experiences but us? Or do you really hold space, respect us, and let us lead? Do you micromanage how we play? How we stand or sit or move in a room? Or do you let us lead the embodied life that comes most naturally to us? You might need to be willing to change your self, your expectations, your ideas and beliefs, your areas of insecurity, and the environments we inhabit. You might need to heal your own traumas. It is possible that you need to change a lot to maximize the amount of spaciousness we experience to simply be, to more fully inhabit our own body and self. Whether we are a child or an adult, how can you give us more agency and control over what happens to us? Challenge yourself here.
Secondly, I believe that some of us earnestly want to stay in our routines while having those routines and needs for familiarity, sameness, and repetition respected and honored. We should not be mocked. This is not a joke. This is something deeply important and meaningful for us. This is what helps our bodies experience safety. We should not be made to feel lesser than for living our lives this way. By accepting us as we are and respecting our needs for routines, sameness, familiarity, and repetition as part of our neurological identity, you are supporting us. Just try and be sure that you aren’t always demanding to be in control, breaching agency, and then calling it all good because. . . there was a routine! That’s not ok. Our routines should be just that: OUR routines not your routines.
Finally, some of us may also want to explore what has led to our reliance on routines, familiarity, sameness, and repetition. We may at some points choose to experiment with other ways of meeting our own needs. It is very, very important that this be 100% our own choice. The new experiences might terrify us, might truly trigger our traumatic stress and fear responses, so supporting us may look like validating us or learning how to help us engage our parasympathetic nervous systems. Perhaps we might want to experiment with ways to restore our interoception in a safe, accepting environment where our rights to choose and control our own bodies and experiences are fully our own. Supporting us in that case might mean helping us find resources like accessible yoga, qigong, singing groups, theater projects, music lessons, or free movement classes where we can experiment with what it feels like to make our own choices with our own bodies. Perhaps we might want to build a fuller sense of agency. To do that, I believe we must be given the experience of authentic control over our bodies and lives. We will need you to deeply rethink the times when you take control over our bodies and experiences. And right when you’re about to put your hands on our bodies or tell us what to do with our bodies, we need you to try so much harder to find another way to help us that does not involve stripping us of that sacred control over our embodied life, our time, and our experiences. Be creative with us. There simply must be other ways. And if sometimes there truly aren’t alternatives, then let’s choose together when those times are so I know what might be coming and that you’re really just trying to keep me safe.
I can’t back this up with much yet, but I feel so sure that we cannot grow and develop these parts of our brains and bodies unless the safety and space are created for us to practice using these parts of our brains and bodies.
Become holders of that safe space.