I Was Playing Life on Hard Mode, But My ‘Health Bar’ Starts From Full Now: For 30 Years, I Didn’t Know What Calm Felt Like in My Own Body – I Didn’t Get ‘Less Autistic’, I Got Regulated
I am Autistic and ADHD, and we live in a world that is, by design, dysregulating for people like me. As a result, I spent most of my life very dysregulated. Because of this, until very recently, I didn’t know what it felt like to be calm and regulated in my own body.
When I was dysregulated, my Autistic and ADHD traits were much more easily recognizable to those around me, because (in my opinion) our medical definitions of Autism, ADHD, and many other forms of Neurodivergence largely describe what it looks like when Neurodivergent people are struggling or dysregulated, and tend to ignore us when we’re doing well, have our needs met, and are properly supported.
In fact, if one only follows the medical language, in many, possibly most cases, one must be struggling to even be identified as Autistic, ADHD, or other differences described within our medical textbooks.
Because I am Autistic, and Autism is one of my Neurotypes that I know the most about (since I’ve had this diagnosis the longest), I am going to use my personal experience as an Autistic person as an example for this piece.
I will go through the diagnostic criteria for an Autism diagnosis, explaining how my outward (and inward) presentation of ‘Autism‘ has changed over the years as I’ve managed to build more understanding of my needs and create a life that supports myself.
While every single Autistic person is unique, and some of us may always struggle, in my case, many of my struggles were due to not understanding my own mind and its needs, and trying to fit myself into systems, structures, and social groups that didn’t meet my needs (that expected me to conform to the world around me – a world that often treated my needs and differences as problems to solve rather than support).
For most of my life, I found myself in a state of chronic hyper-vigilance, always on edge, wondering who or what would bring the next assault.
As a result, I lived tip-toeing on the edge of what some refer to as my ‘window of tolerance‘, where the slightest change could tip me over into overload (meltdowns, shutdowns, as well as emotional and sensory distress).
I like to describe my experience using a video game ‘health bar’ metaphor.
The non-autistic people around me, especially those with more proximity to neuro-normativity, live in an environment that is tailored to charge up their ‘health bars’, or to take less life force away from them.
My ‘health bar’, on the other hand, was constantly taking hits that dealt huge chunks of damage.
At the same time, because I didn’t know what I could do to regenerate my life-force, and kept trying to regenerate myself with the wrong things (mimicking the people around me who had very different needs than I did, due to not understanding my own Neurodivergent mind and its needs), I was unable to recharge myself. This led me to start each day with much less ‘health‘ in my bar than the people around me.
While my peers, who had fuller ‘health bars’, could take 10-20 ‘hits‘ of damage a day, in my depleted state, and my bar so low, it was like starting out the game of life each morning, only able to take on a few hits of damage before dropping past my window of tolerance, sending me into ‘game over‘ (various types of overload that are commonly associated with ‘Autism‘ in our medical models).
Within the last few years, since redesigning my life and finally gaining an understanding of my needs, triggers, and the types of support that actually help me recharge and shield myself, a lot has changed.
I am no longer starting each day with a ‘health bar’ blinking a warning that I’m close to being tipped into ‘game over‘.
I am now starting with my ‘health bar’ on ‘full‘ each day (or much closer to it). This change means many of my Autistic and other Neurodivergent traits are much less visible to the people around me. . . at least if they are going by the narrow, deficit-based medical models of Autism and Neurodivergence (which fail to give us clear pictures of what Autistic success and regulation look like).
Content warning: This article will include some medical and pathological language to describe Neurodivergent people and our experiences.
Criterion A: Social communication & social interaction (all 3 required)
A1. Social-emotional reciprocity
In the diagnostic manual, it says that Autistic people:
- May not initiate or respond to social interactions ‘normally‘.
- We are less likely to share interests or emotions with others.
- Can struggle to start conversations or keep them going.
For most of my life, all of the points above could have been considered ‘true‘ for me (though I push back on the concept that there is anything ‘abnormal‘ about the ways Autistic people socialize and engage, and reject the use of non-autistic people as the baseline that we use to define what is ‘normal‘ and socially acceptable).
Once I was regulated & had my needs met, things changed:
As I started to feel more confident, and learned how to connect with people who ‘get me‘ and how to avoid those who don’t (and to care less about when people don’t like me) I started to be more confident initiating social contact with the right people, at the right time, in settings that feel safe (quiet, predictable, no performance pressure).
I have learned that I have a depth that is ‘too much‘ for some people who prefer shallow, surface-level conversations and are uncomfortable with how deep I am and how passionate I can be.
- Many people want the Cliff Notes version of things, but I am a whole textbook.
- When I know people won’t reject me (because I am surrounded by safe people), I share my interests much more enthusiastically (as you probably know if you follow my blog).
- Now that I am a more regulated Autistic person who surrounds themselves with people who love my depth, I frequently and joyfully info-dump about my interests and passions (something I used to do when I was younger, before I realized people didn’t appreciate it when I did this and stopped trying to connect with others).
- It turns out I am capable of reciprocity (with other deep people), just not with those who expect non-autistic-style small talk.
I have also learned that, while I have to focus more to get timing right in conversations, I actually can have a back-and-forth conversation much more easily when I am not overwhelmed, with people who are patient with me, who allow me to take the processing time I need, especially if the topic is meaningful to me.
- With mindfulness on my part, and when the person I am engaging with is also mindful, conversations flow more easily.
When I was overwhelmed most of the time, it was much more difficult for me to express empathy and compassion for the people around me, because I wasn’t picking up on things and didn’t have the capacity to care for others (when my own needs weren’t being met).
- Often, I didn’t know how I felt, which made it hard for me to understand how others felt.
- I was also in survival mode, and since I wasn’t able to ‘put my own oxygen mask on,’ so to speak, it meant I wasn’t available to attend to or help others with their own struggles and needs.
- I was also very anxious about other people and interacting with them, viewing most people as a threat, because I developed social phobia (and was even diagnosed with social anxiety) as a result of how many people were mean to me over the years, and not understanding what about me was rubbing people the wrong way.
- When I saw others as a threat, it was hard to be empathetic to them because of my own triggers and viewing other people as aggressors to defend myself from (instead of to care for).
It turns out I can show empathy and care for the people around me. However, the ways I express this care may differ from how other people do.
I don’t always know what to say, but I can connect with people in my own way.
- I express myself and connect with those around me, Autistically with safe people – through actions, shared passions, and often with written words (because, for me, writing lets me communicate from a calmer, more regulated state).
- This means I can thrive and engage with much more reciprocity than when I was surrounded by people who expected me to conform and ‘be less‘ and when my nervous system was still in survival mode.
A2. Nonverbal communication
In the diagnostic manual, it says that Autistic people:
- May struggle with eye contact, exhibit atypical body language, and show limited facial expression.
- May struggle to pick up on or understand gestures or tone of voice.
Once I was properly regulated & finally had my needs met:
I realized that I was faking eye contact even when it was uncomfortable for me.
- I learned that, because I am a visual thinker, looking away helps me think and process information, which, in my opinion, is a difference, not a deficit.
- I also realized that eye contact feels very intimate for me, and I can give it on my own terms with people I am close to and feel safe with.
- Another part of my social anxiety (that I don’t have anymore) is that my social anxiety made me uncomfortable with most people, so eye contact with others often felt like a threat, and was triggering to me, when I wanted to be invisible… but not anymore.
Growing up, I had learned to hide my internal feelings (due to fear they wouldn’t be understood or would get me in trouble/cause me to be bullied).
- This often meant having a blank face when experiencing emotions that others might perceive as ‘bad‘ or would draw too much attention my way, or cause people to ask me questions about how I was feeling.
- It also meant that sometimes I had a tendency to be ‘over-expressive‘ and ‘cartoony‘ (due to studying cartoon facial expressions growing up) because I was trying to outwardly express the emotions that I thought people around me expected me to have.
Once I started to feel safer around other people, I became more regulated and felt I could express my feelings, thoughts, and emotions more authentically.
These days, my face displays genuine emotions more frequently (because I am not fawning/masking or shutting down and dissociating as much).
As I started to snap out of survival mode, I also started studying human body language and facial expressions because, while I had learned a lot about animal body language and expressions growing up, I hadn’t realized I needed to pick up ‘unspoken communications‘ from the humans around me.
- It never occurred to me to study people in this way. I had, for most of my life, falsely assumed that people would tell me what they needed and that there was no need to ‘read‘ people the way I learned to read cats, dogs, and other non-human animals. Looking back, I can see how this assumption caused a lot of trouble in my life over the years.
- Now that I have been working on this since my Autism diagnosis (almost 10 years ago), I am starting to know what to look for, and am beginning to pick up on and even understand when people use different tones and gestures in conversation (something I didn’t do for most of my life).
Being well-regulated in a calm, sensory-friendly environment is a big part of this for me, because being dysregulated, by a space with lots of background noise (which can cause sensory overload), or being emotionally or physically stressed, can make processing and attention more difficult for me. However, when my mind and the environment are right (assuming I am not being rushed), I am learning to read people more easily (especially people I know well).
Something else I have noticed is that, for me, I often find Autistic people (who aren’t camouflaging their Autistic traits) easier to read.
Autistic body language and communication are often more direct. We may also use more ‘big‘ movements that are less subtle than the social cues of non-autistic people (like different types of hand flaps that can express a multitude of emotions, jumping up and down when happy, or rocking when stressed or focused). The manual calls that “abnormal“ body language; however, if people know what to look for, these movements can be an essential part of authentic Autistic non-verbal communication.
A3. Difficulty developing and maintaining relationships
In the diagnostic manual, it says that Autistic people:
- May not be interested in our peers, have trouble making friends, and have difficulty adjusting our behavior to fit different social contexts.
Recently, I’ve learned that, in my current state, many of these things are false for me.
Growing up, I tried to make friends but struggled because I was trying to connect with people who expected me to be something I wasn’t (non-autistic).
Also, because I didn’t understand how to read the facial expressions and body language of the people around me for most of my life, it left me venerable to being abused, because I didn’t pick up on it when people were pretending to be nice to me because they wanted something from me (often to bully me or trick me into doing things that would get me in trouble for their amusement).
When I was younger, I wasn’t nice to people I didn’t like, so whenever people were ‘nice‘ to me, I assumed they must like me.
It never occurred to me that people who hated me would pretend to be nice.
I wanted to have relationships with other people, but people (especially kids my age) were hard to get along with.
Eventually, I decided it was too difficult, and people weren’t worth the stress, so I stuck to friendships with animals or people who would seek me out, or who my guardians paired me up with, because it was easier than reaching out and being rejected by my peers.
Now that I am older and have worked past my social anxiety, I’ve started to want and welcome relationships with other people again.
The relationships I seek out these days are often with other openly Neurodivergent people, and in small groups with clear rules.
I’ve also learned that I can adjust my behavior more easily when my ‘health bar‘ is full, and when the expectations of a group I am participating in are explicitly laid out and explained rather than based on hidden social rules.
For example, there is a small social group I attend once a month, where we each go around the circle and take turns speaking. A timer is set, and we can speak until it goes off.
The rules of this group are clear. We do not interrupt, we do not try to fix anything or offer feedback unless it is explicitly asked for, we just witness and hold space for the person sharing.
In this way, I can easily handle engaging and sharing, because the expectations are clearly explained and agreed upon by all participants before we begin.
When I am regulated and feel safe, I can be a loyal, honest, and deeply caring friend. I just don’t fit the neuro-normative script for friendship (small talk, frequent casual hangouts).
I also need more downtime between engaging with others, and I thrive when I have lots of time on my own to process things and unwind.
I don’t have many friends, but the ones I do have I would trust with my life. For me, it is a matter of quality over quantity.
The rest of this post is available on Substack and Patreon.
This post was written with the assistance of Focused Space (a sponsor of the Neurodivergent Rebel blog).
What is Focused Space?
Focused Space is an ADHD-focused, Neurodiversity affirming, goal‑setting, and online co‑working / body‑doubling platform designed to help people prioritize, stay motivated, and bust through procrastination (and it is something I believe in and personally use every day).
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