Chronic Dissociation and the Autistic Nervous System – How to Get Your Life Back

Written by Miranda Jane, Neurodivergent Affirming Nervous System Coach

Miranda Jane is a Neurodivergent-Affirming Somatic Coach and Consultant, specializing in the masked and late-identified Autistic and ADHD experience. Their personal crusade is to help recently identified AuDHDers understand and appreciate themselves: mind, body, and nervous system!

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When I came to this time, I was at the top of the hill. “It happened again,” I thought, incredulous. What could have triggered my dissociation on this low-stress day, when I was literally out riding my bike for fun? I tried to rewind my experience in my mind and was mortified to realize how seemingly insignificant the trigger had been.

The “sensitive” autistic nervous system

I am a coach and consultant to late-identified Autistic-ADHDers, and over and over, I hear people describe how humiliated they were as children to be labeled as “sensitive.“ The term was used as an insult, letting them know they were hurt too easily, cared too much, and needed to make their feelings smaller to be loved and accepted by family, friends, and society.

So when I tell you we have a “sensitive” nervous system, please try to let go of all those old experiences, and hear what I’m trying to say. Think of the way you would describe a minutely calibrated telescope or microscope, which can effectively magnify the tiniest details. It’s an extremely subtle and effective instrument, but it can sometimes zoom in so suddenly that everything goes blurry, and you have no idea what you’re looking at. The level of sensitivity means it lets you see meaningful things that others can’t see, but it can also become disorienting, with the entire field of vision dominated by one piece of the picture, and everything else entirely lost from view. This is what it can feel like to be AuDHD and hijacked by your nervous system’s threat response.

There is a saying that having an ADHD brain is like driving a Maserati with go-kart brakes. The thoughts, emotions, and sensations can move so quickly that things feel out of control. In Autism, the brain is 42% noisier even at rest than in our Allistic (non-Autistic) peers, and our sensory processing differences can be overwhelming. The function of our Autonomic Nervous System is to keep our heart rate, blood pressure, and digestion functioning optimally for the situation we find ourselves in. A big part of that is the vagus nerve, which takes in all the sense data from our body, analyzes it in reference to our entire history of experiences, and then determines how much threat it perceives us to be under in any given moment.

This is called “neuroception,” and for better or worse, neurodivergent people tend to experience the world as a place of near-constant threat and danger.

Demand vs. capacity and the window of tolerance

In addition to our overloaded sensory processing, most of the late-diagnosed people I know have been trying to survive in a world that demands way more of them than they can possibly do. 40+ hour work weeks, socializing, parenting, and housework. It can feel as though there is never a moment to breathe. And yet it is that very relaxation that is needed to keep us functioning at our best, and allows us to return to our “window of tolerance” after we get overloaded.

The window of tolerance refers to that sweet spot where our neuroception determines the moment to be “safe enough” for us to be doing whatever it is we are doing. The body produces enough energy to accomplish our tasks, but then goes easily into rest-and-digest when the task is completed. For neurodivergent people, especially Autistics, hypervigilant to the need to “act normal,” the tasks are never done. And not completing them registers as an impending disaster, and we are living in a state of nervous system activation even in times we know we should be sleeping and resting.

The result of living in a chronically stressed state is that we are regularly just one small step from the edge of our window, tipping into fight, flight, freeze, meltdown, or shutdown. To others, it can look as if our rage, panic, or collapse are unprovoked and even histrionic, but I assure you they are simply the nervous system fighting for our lives in an environment it perceives to be constantly threatening our survival.

Fight, flight, fawn, freeze

When our nervous system perceives that there is a threat that we can overcome, it will shift us into the physiology for fighting or running away, pumping out adrenaline and releasing glucose into our bloodstream to give us energy for what’s to come.

If there’s a potentially dangerous or powerful person we need to interact with, we will often move into fawning, or making ourselves seem pleasant and helpful, and above all, non-threatening to them. In dogs, this behavior would look like rolling on our backs and showing our soft belly, but as people, it might look like flattering your boss or laughing at their jokes even if you find them offensive.

If none of those responses feel like they’ll work, the body goes into freeze, almost like a possum “playing dead.” It might feel like you can’t move, you might lose verbal skills (also called selective mutism), and your blood pressure may drop so precipitously that you become dizzy or even collapse into what’s considered dorsal vagal shutdown, where the body is essentially preparing for severe injury or even potential death.

While these are brilliant and incredible adaptations that have allowed humans to survive acute danger, they are not designed for the type of stressors we commonly experience today: chronic stressors including financial insecurity, confusing or tiring social expectations, pollution and global warming are things that require our best thinking and our calmest state of mind, which is the opposite of what we get in a threat response.

Even so, our bodies become primed to use the response that has worked best in the past, so fighters will fight and runners will run more and more often when put under stressful conditions.

Dissociation was ruling my life

My nervous system, like that of so many Autistics, developed a preference for dissociation. While dissociation can look calm from the outside (because there’s not a lot of movement), it is more akin to one of those nightmares where you are desperate to run away or scream, but for some reason, you just can’t communicate with your body.

Everything around you bulges and undulates like fun house mirrors, or seems unreal and far away, or blurry. It’s a state that has the high energy of fight or flight, where you’re flooded with adrenaline, but the frozen state you see in collapse, or dorsal vagal shutdown.

It can feel a lot of different ways from the inside many find it terrifying, but after a lifetime of relying on dissociation daily, I was no longer even aware it was happening until I learned about the nervous system and trauma and started to understand that much of what I’d considered to be my personality was a chronically activating threat response.

Teasing comments like “space cadet” and “day-dreamer” had been frequent in my younger years, and as an adult, I was frustrated by my inability to hold onto the narrative of my days, weeks, and years. In therapy, I had tried to make a timeline of my life and ended up erasing it over and over, as though the memories were floating around unanchored to each other.

Surprisingly, when I noticed I was dissociating chronically and started to do conscious work to stay present and reduce my dissociative spells, I realized that there was a soothing quality to dissociation for me; it had become a place to rest, to get away from my life, like brief pauses scattered throughout the day. Dissociation comes when the body determines that danger is unavoidable, and it releases endogenous opioids (the body’s natural pain-killers) to help you tolerate the bad thing it believes is happening.

Which means I was drugging myself, over and over, almost any time I perceived there to be a threat. And the more I lived outside my window of tolerance, the smaller the stimulus needed to be for my nervous system to perceive it as an unbeatable threat. Fight and flight were happening too, but more and more frequently, dissociation had become my crutch for getting through the days.

Masking and dissociation

Another complicating factor that I was not aware of until I learned I was Autistic was masking, or repressing one’s natural (AuDHD for me) way of being and instead performing more neurotypical behaviors. Making eye contact, hugging friends, smiling, and providing care and concern for others, and denying and repressing my pain and discomfort were acts I trained myself to do without realizing that other people didn’t do that, and allowed themselves to just feel whatever they felt.

My first clue was in high school, when my three best friends and I decided to have a night of brutal honesty, putting all our cards on the table. Each person was told the truth about how the rest of us perceived her. When it was my turn, they all said the same thing: “You’re too nice!” I didn’t understand and thought they were going easy on me, protecting me from my flaws. Years later, when I learned about masking, the memory hit me like a rogue wave, almost knocking me down. They had seen what I had not, that my niceness was fake, that I was a fake, and they’d all known it decades before I had.

Living outside your window of tolerance

The combination of masking, dissociation, and challenges to interoception (the ability to know what you are feeling in your own body) can combine in undiagnosed Autistics and ADHDers in dangerous ways. Interoception lets us know when we’re hungry, tired, or need some alone time. Masking ends up normalizing the practice of prioritizing external or social needs above our own internal needs. Over time, we are effectively hiding or repressing our body’s cues that would naturally push us towards what we want, in favor of doing what we think needs to be done to properly perform our role in society, trying to shore up our tenuous sense of social safety.

Near-constant cues are coming from outside about what is expected or desired of us. Our parents and extended families have expectations, and our friends often have different desires. Capitalism permeates our lives (at least in America, where I grew up), and we absorb the imperative of having a strong work ethic and equate our intrinsic value with our ability to earn money. Christian values permeate our culture here, too (even if we aren’t personally raised with religion), and the complexity of how to be “good” for each of these various environments or value systems just ratchets up the masking and tamps down on the internal cues, which as a child I learned were inaccurate (think sensory sensitivities) and a distraction, not a guide to be respected.

The result is that we are essentially flying blind, living our lives without any of the feedback systems most people have access to that allow them to stay home from work when they are sick, sit down and rest when they are tired, and be selfish in the best of ways: prioritizing their own needs so that they can be healthy and participate in life fully. Maskers can lose touch with our own needs so profoundly that we think we are fine and push through our body’s cries for rest and nourishment.

When we’re operating in this way, our nervous system understands that we are in danger of exhaustion, illness, or dehydration. It prioritizes social needs because it also perceives that our social acceptance and support are not secure, that we must mask to stay safe socially. And because of all these dangers, it moves into threat response states more and more often, eventually leaving us living in a near-perpetual state of fight, flight, freeze, or collapse.

Recognizing the problem

When I was on that bike ride, I’d been working with a somatic therapist for several months. My PTSD was in remission for the first time in over a decade, and I was reveling in my newfound freedoms. Panic attacks were now very rare occurrences, and I was no longer plagued by flashbacks or nightmares. But there was still something off. I felt childish, unformed, as though I didn’t know who I was, even though I was in my mid-thirties. My memory of my own day-to-day experiences was still hard to pin down, and while the anxiety and depression were diminishing, I felt like I wasn’t present in my body or able to enjoy life the way other people did.

It felt like I was not fully living, but hovering somewhere just outside myself, almost all the time. I didn’t know who I was, or what I liked or wanted. I seemed to be a shape-shifter, becoming whatever the person I was talking to needed me to be in that moment. And the shame and fear I lived with, seemingly for no reason, were a constant threat, driving me to be perfectionistic, self-loathing, and people-pleasing.

In addition to working with my somatic therapist, I had enrolled in graduate school for Counseling, and was signed up to take the Somatic Experiencing training the following year. I was reading everything I could get my hands on about the way that biology intersected with psychology, and I’d come upon the concept of dissociation. As soon as I learned what it was, a shiver ran through me, and the hairs on my arms stood on end.

I remembered having an extreme experience of dissociation during a traumatic event in college. At the time, I had seen my body as though from above and had mistakenly thought I had learned to fly. “I am special after all,” I thought happily as I flew around the room, leaving my body below and marveling at this unexpected good luck to be no longer earthbound. In retrospect, that thought spoke directly to my twice exceptional (2e) experience. Having been labeled as smart and capable as a child and then having run into cognitive, social, and sensory brick walls so often, I’d decided I must have been wrong, and was not gifted or “special” after all.

I’ve not had another experience of flying, but something about what I was reading made me very curious. I started paying attention to my attention in real time, noticing where my thoughts went. I realized I was going into a light dissociative state so much that I was shocked; it felt like I was gone more than I was here. I’d already worked through my trauma history and felt better, so why was this still happening?

At the top of the hill that day on my bike, legs shaking, heart pounding, and face red from the uphill climb, I rewound whatever tape I had of the previous few minutes. I was at the bottom of the hill. A pickup truck came by on my left. Had it swerved and almost hit me? No. . . A man driving, a boy wearing a baseball cap in the passenger seat, first looking at me, then at his dad. A thought/feeling had gone through my mind, “If I don’t make it up this hill, they will think I am weak, useless, female, shameful, disgusting.” It wasn’t those words exactly, but that was the felt sense. The fear of being perceived as less-than or vulnerable pushed me over my limit into dissociation. The dissociation had allowed me to push through my own body’s cues to get off the bike and push, and I’d made it to the top of the hill, sweating and puffing, ready to pass out in the Texas heat, but present again and aware of what I’d done.

I’d dissociated not because of an imminent threat to my physical safety, but because of the thought or idea in my head about the potential for a random stranger, a child, to judge me and find me to be lacking. It seemed unthinkable. I was used to much higher levels of danger, having spent time living and working in low-income housing projects in New Haven and New York City, witnessing and being subjected to threats of physical violence on many occasions. I believed myself to be a bit of a badass, having skated as “Scorned Fury” for several years with TXRD (the local banked-track roller derby league in Austin, where I now lived). Why did I care what that twelve-year-old twerp thought of me? And yet. I could not deny the chain of events that had led to the dissociation. I craved security and acceptance, possibly social status of some kind, and would sacrifice my own needs and violate my limits to try to attain it, even from strangers, even from threats that were fabricated by my mind.

Long-term consequences: Illness, burnout, and a diffuse sense of identity

The danger of living beyond your physiological means, outside your window, in chronically elevated threat response states, is that it can wear out all your fan belts. Little by little, everything starts breaking down. You get sick, and then because of the upregulation in your nervous system, the immune system never shuts off. You get the equivalent of long COVID, but it can be after any virus, with a wide array of unpleasant symptoms. Chronic fatigue and brain fog set in. Eventually, you can experience burnout.

Neurodivergent burnout (often called Autistic Burnout or ADHD Burnout) is a major health crisis, not a bit of boredom with your life, as the term suggests. We can lose life skills, and that loss can be binary (I used to be able to read and now I cannot) or on a gradient (slowly going from enjoying a full and vibrant social life to just going out for necessities and eventually ending in near total isolation).

Another long-term effect of chronic dissociation is developing what’s called a “diffuse sense of identity,” and it refers to that feeling I had of not knowing who I was or being able to identify my authentic needs, limits, and desires. It’s like an imposter syndrome about your own identity. Those gaping holes in my memory, my constantly ignored sensory needs, and the prioritizing of what I thought I was supposed to do over what I wanted to do blocked my ability to know who I was. Like in the fairy tales, I’d left a trail of breadcrumbs so I would be able to find my way home, but the birds had eaten them, and I was profoundly lost to myself.

Getting a grip

I committed there and then that I would learn how to come back from dissociation, and I would choose, as often as possible, to do what it took to come back every time I noticed I had left myself. While the sheer quantity of time I spent out of my body was intimidating, the upside was that I would have so much opportunity to practice coming back that I was sure to get better. In roller derby, I had learned the benefits of practice, and this was my chance to apply the lesson again.

A few years back, I had thrown myself into derby as though my life depended on it, and in some ways, I think it did. I was recovering from a devastating divorce and was desperate to regain some sense of self-worth, strength, and dignity. When I started, I was the worst skater in the entire league of maybe fifty or sixty skaters. I didn’t have a car and had to scrounge rides to the track from other skaters. My ankles blistered, then bled, then developed deep open sores. I wondered if this counted as self-harming but the drive to prove myself won out over pain and in time I learned how to wrap my ankles, how to push myself to the limits of my strength, how to fall down and get back up (as my mother aptly noticed – another example of someone else knowing me better than I knew myself).

Eventually, I developed my strength and skills, and while I was never one of the better skaters, I did get drafted onto a team and was able to compete for several seasons.

Now I was going to apply that grit and determination to practicing coming back from dissociation. I knew what to do from my somatic work and education, and from trial and error. After a few months of intensive work (less time than it took to learn to skate) I was no longer dissociating from those little fears, and could stay present for more and more of my life and I was able to notice the automatic threat-based projections my mind was constantly producing and start to question them, hold boundaries with my thoughts.

Present day

Fifteen years later (at 48), I learned that I am Autistic as well as ADHD, and began to make sense of my life and the strange liminal space of dissociation that I’d been inhabiting for so much of it. I no longer experience the degree of dissociation that was my norm in my earlier years, but I still dissociate frequently, and from subtle threat cues. Now I recognize it faster and can more easily identify what the thought or experience was that made my brainstem panic and push the eject button. I know that my Autistic sensory and relational distress can be enough to make me leave my body, and I do my best to take care of my needs. I’ve learned about PDA (Pathological Demand Avoidance, lovingly re-named Persistent Drive for Autonomy), which can bump me into freeze if I try to commit to something that I’m not completely ready and able to do. And I have had the pleasure of sharing my life with so many other late-identified neurodivergent people who struggle as I do, and who are committed to caring for their nervous systems just like I am, moment to moment, day after day, in a conscious practice of self-acceptance and love.

How to get your life back from chronic dissociation

If you are struggling with dissociation and suspect you may be neurodivergent, you don’t have to keep suffering alone. The way back is simple, but not easy. And it takes thousands of repetitions to rewire the default patterns that are able to be rewired due to experience. Some of your underlying neurology will always be how it is today, but some of it can change. I believe the most healing thing you can do is engage with other people like you, your neurokin, and surround yourself with examples of people like you living in ways that work for them, instead of sacrificing their well-being to fit society’s expectations.

The most important thing to remember is that when you are dissociated, it is because your nervous system has taken in data from both the external environment and your internal environment, including your biological needs and your thoughts, and has determined that it is too dangerous to stay present. Based on your history and your present moment experience, it’s determined that you are going to experience unavoidable harm, and it is pouring numbing painkillers into your system.

If you want to stop the dissociation and come back to yourself, you must help your brainstem recognize that it is safe enough in this moment to be doing whatever it is that you are doing. Start by asking yourself the question: “Am I safe enough to be present for this moment?” Try to pause your thinking and allow your body to answer. Listen to any information that comes up for you with curiosity and compassion. Yes, curiosity and compassion are crucial to the process; consider them your primary tools in this process.

If you sense that you are safe enough to proceed, then allow yourself to bring in some present moment sensory data from the environment.

How’s the lighting? Are there pleasant or unpleasant sounds? Is anyone else in the room with you?

Make it pleasant to be present. Get a pillow, or several pillows. Put aside everything on your to-do list until you are fully back to yourself. The only priority right now is coming back to safety.

Is the pressure to come back from dissociation stressing out the parts of you that feel your worth is based on performing? Take the pressure off, remind yourself this is a practice, and that you’ll have thousands of opportunities to repeat the practice.

There are many techniques for calming the nervous system, so experiment and see what works for you. Try taking a walk, listening to music, engaging with a special interest, connecting to a beloved friend or pet, or spending time in nature.

On the way back to yourself, you may shake or tremble, feel heat or chills, or have unexpected thoughts or memories come into your mind. You might tear up or start laughing. Let your body do whatever it needs to do as you reconnect. For me, yawning or deep breaths that take me by surprise, watering eyes, and my vision clearing are all signs I’m coming back. Often, there are thoughts, emotions, and internal knowledge waiting for me that I’ve missed because I’ve been away.

While I can’t say it’s a purely pleasant experience to come home to myself, it does feel right, somehow congruent, and is almost always a relief. If you’d like a supportive group to do this work with, or to consult with me on your process, please contact me through my website, where I work with my colleague Amy Noyes to help late-identified Autistic ADHDers rebuild their relationship with themselves.

Visit my website for more info!

Read more from Miranda Jane

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Miranda Jane, Neurodivergent Affirming Nervous System Coach

Miranda Jane is a late-identified Autistic ADHDer with a passion for helping people like them lead more pleasurable and fulfilling lives. They work with adults who are “twice exceptional” (2e), in many ways brilliant and in many ways struggling to function and disabled in their everyday lives. This particular blend of special skills and (often invisible) disability is particularly dangerous, leaving those who are 2e feeling thwarted in achieving their goals and leading to high rates of self-loathing, despair, and suicidality.