Why, to me, “Autistic person” and “person with Autism” are two VERY different phrases, and why I never want to be called a “person with Autism” – please note this is just my PERSONAL preference.
Over the years, I’ve often said:
“I very specifically identify myself as ‘an Autistic person’ instead of ‘a person with autism’ because, in my mind ‘Autism’ and my ‘Autistic experiences’ cannot be separated from me, as they are so heavily interwoven into how I experience, interpret, engage with the world around me, that if my ‘Autism’ were somehow removedI would no longer be the same person.”
My Autistic mind influences my choices, my hobbies, likes, dislikes, the people I enjoy spending time with, the way I interpret gender, and many other social constructs (like time, calendars, money, morality, organized religion, monogamy, and compelled compliance with hetero-normativity, neuro-normativity, and other behaviors compelled by society).
In my case, being Autistic also impacts the way I view and engage with social hierarchies and other power structures. I don’t really respect them at all, and the idea of some people having more power than others really frustrates me, because I don’t understand how people can feel entitled to claim power over others.
If I’m engaging authentically, I come to an office with a whole ‘talk to the entry level people and the executives the same way’ attitude, which doesn’t always go over well with executives who think the world owes them extra respect and ass-kissing.
It is just who I am, a disruption to the system, a contrarian by nature, making people uncomfortable simply by pointing out uncomfortable truths about the world around us, the many injustices of the world, and screaming ‘Why!?‘ into the abyss repeatedly due to how much this society we’ve created doesn’t make sense.
Of course, I am well aware that my desire for ‘fairness’ and ‘justice’ is limited by the programming I’ve received in our society.
The very ideas of ‘fair’ and ‘just’ are relative… because those in power also believe their own actions of exploiting the rest of us are ‘fair’ and ‘just’ in their own sick and twisted ways.
As a kid, I often struggled when adults expected me to do things for the simple reason, ‘because I said so,’ which was often given by teachers and other authority figures.
While it was assumed I was being difficult with all my questions, or trying to get out of what was being asked of me, what is true today was also true back then:
Understanding why I am doing something helps me do the task better than being told what to do without knowing the reason, because I build from the ‘why’ to inform my actions. ‘Why’ is my baseline, the starting point I need to make choices and take action.
I struggle to act without knowing ‘why’, even though some people are fine just knowing the ‘how’.
Below is a story I used to illustrate this point in my best-selling business ethics book, Workplace Neurodiversity Rising.
“Because I said so” won’t work for Some People
I am a person who’s always been driven by the question “Why?”
Growing up, my struggle to act without knowledge, combined with needs others didn’t understand, was often described and treated as ‘rebellious behavior.’
In elementary school, my teachers frequently used words like ‘unmotivated‘, ‘disruptive‘, ‘stubborn‘, ‘defiant‘, and ‘non-compliant‘ when discussing me with other adults.
All of this was treated like something to ‘squash‘, ‘undesirable behaviors‘ I needed to change, with no understanding of why I was the way I was, or the unmet needs behind these so-called ‘behaviors‘ (like making noises, struggling to sit still, forgetting to take home or bring items for assignments, asking too many questions or questions my teacher thought I should know the answer to).
I was a dys-regulated kid, with way too much energy in my body, expected to sit still and quiet… and when I couldn’t do that, I was treated ‘behaviorally‘, recess and lunch taken away, forced to eat and then stay in the classroom with my teacher, or sit alone in the cafeteria, with no time outside after lunch, as punishment for not having my needs met.
My need was a physical outlet for my energy.
Many things could have helped me with this need to move my body and regulate my senses (other than punishments), such as having my chair at the back of the room and letting me stand and move about quietly as needed.
More breaks and more time outside would have been the best thing for me, but instead, the little break time I had in the day was frequently withheld from me, and I was put on display for the others in my class as a ‘cautionary tale‘ for what would happen if they also ‘misbehaved‘.
Eventually, I learned to hide my discomfort, pretending everything was fine even when it wasn’t, which then led to being able to disconnect from my body and its sense of discomfort and other needs.
My body would beg me to care for it, feed it, move it, drink something, or go to the bathroom. Still, the signals that had taken most of my early childhood to build had been cut off, and I couldn’t hear them anymore (because I’d been taught at school that I wasn’t in charge of my own body anymore – because my teacher wanted our bathroom breaks to be on her schedule and for me to ignore my other sensory needs).
I didn’t know most people can’t ‘turn off‘ their feelings at will, until I lost that ability when my grandfather died in March of 2024.
Suddenly, it was all too much, spilling over into everything. Then, a few weeks later, we lost our eldest dog family member, Rocky, and, unable to escape all of my overwhelming feelings, the combined loss sent me spiraling into a deep depression.
There, in one of the lowest points of my life, I was faced with the fact that I’d been using dissociation to cope with triggers and overwhelming feelings (especially feelings I felt shame around), so that I could avoid feeling unpleasant emotions and sometimes physical pain.
Years later, losing another four legged friend, Dusty, I’m now able to sit with my grief in a way I could not easily do in years past.
That my ‘high pain tolerance’ (I’d bragged about my entire life), that I thought was tied to my sensory profile when I was diagnosed Autistic in my late 20s… likely had more to do with being trained to ignore my bodily signals of pain and discomfort from a young age, and my ‘skill‘ of tuning out pain and discomfort was actually… another trauma response.
The full post is available for my Super Helpers on Substack.
Well said. My autistic daughter has told me the same
Thing