From “Failed Person” to “Autistic”: What I Finally Learned About My Brain and The Moment I Realized I Wasn’t Broken… The System Was.
When I was diagnosed as Autistic, almost 10 years ago now, it was a big awakening and the beginning of a journey.
At the time, I realized a few things:
First, it became clear to me that for most of my life, I wasn’t living for myself (but was living a life I thought I was expected to live instead of one I wanted ). I also realized that I hated myself and had no self-compassion.
Another painful realization was that my internal compass was broken and that I had no idea who I was, what my needs were, or what I really wanted in life.
I also realized that for years I’d been ‘chopping off‘ and doing my best to get rid of or hide the parts of myself that I (or the people around me) had deemed ‘bad‘ or ‘unacceptable‘ and that I had a lot of shame around all the ways I felt I wasn’t ‘measuring up‘ to the people around me (who had very different brains and experiences of the world than I did).
Unfortunately, I didn’t know this (that my peer’s brains were so different from my own) because, without understanding the paradigm of Neurodiversity, I thought there were “good brains“ and “bad brains“ (with one type of brain as the default, and everything else, including my brain, as flawed).
For most of my life, before I knew what ‘Autism‘ or Neurodivergence were, I’d tried to mirror the people around me, thinking I was a failed person for all the ways I struggled to keep up with the people around me.
Learning I was (and always had been) Autistic shed light on why things other people found easy were sometimes very difficult (if not impossible) for me. It also awoke me to a painful fact that, if I looked at all the parts of myself I’d been ashamed of and tried to overcome, file away, or hide over the years, many of those things (that I hated about myself) were actually Autistic traits.
At first, I started to fall into the camp of ‘Autism is bad, and all my problems are caused by Autism‘, and learning that I was Autistic and nothing would ever change that weighed heavily on me.
As I learned more, I started to realize ‘Autism‘ wasn’t just the things I’d grown to hate about myself over the years.
The more I learned about ‘Autism‘, the more it became painfully clear to me that some of my best qualities could also be traced back to ‘being Autistic.’
Eventually, I started to have a more balanced human view of ‘Autism‘ and what ‘being Autistic‘ meant to me. This came with the revelation that many of the things described in the DSM as ‘deficits‘ in my case were neither good nor bad… but simply were.
It bothered me that the diagnostic manual described some things I loved most about myself as purely negative experiences.
For example, “Highly restricted, fixated interests that are abnormal in intensity or focus“…
Sure, my obsessive tendencies and hyperfocus sometimes brought stress to my life, especially when I focused on one thing for so long that I let other important parts of my life (like people, relationships, and self-care) slip by, or when a fixation on a problem I couldn’t solve became so consuming and stressful that I would make myself physically sick over it.
In many ways, this obsessiveness could easily be seen as one of my biggest weaknesses (especially before I understood it)… but, at the same time, it could also be one of my biggest strengths (and a source of great pleasure for me).
Hyperfocusing on something I love and am passionate about is, for me, a very pleasurable experience. It is my safe space.
I could get lost in one of my focus areas for long periods, learning or creating as time slips away so fast that hours can feel like mere minutes.
When the world is too much, and I need a break, my passions wrap me in love, recharging and shielding me from all of my troubles and pain – because when I focus deeply, it can feel as if nothing else matters or exists.
For most of my life, I used my focus tunnels for escapism (dissociation) when life was too hard to bear. Still, more recently, since my diagnosis, they’ve become pathways to connecting to the realities of myself and the world around me.
My inability to let things go has also driven me to learn so many wonderful things over the years.
My obsession with reading and writing, and then with Autism and Neurodiversity, has led me to create this blog, write and contribute to multiple books, and learn to self-publish. This obsession drives me and has evolved into a focus on understanding the human condition, systems of oppression, and how we could dismantle harmful systems and replace them with ones that support and empower all of us.
As I write this, I realize this may be a prime example of “focusing lots of attention on an unsolvable problem“. However, I do like to think we’ll get there one day, even if it doesn’t happen in my lifetime, and maybe, just maybe, something I’ve done or written could help push us at least a little bit closer to that dream.
Plus, even if we don’t get there in my lifetime, I’ve very much enjoyed learning and writing about these problems over the years. It gives me a way to express my frustrations with the world, instead of bottling them all up.
I can now see, despite the way our medical books describe ‘Autism‘ and Autistic people (in a narrow, pathology-driven manner that only talks about Autistic deficits, struggles, and pain, without bothering to mention our strengths or what a successful, thriving Autistic person looks like), the reality of my Autistic experience is much more nuanced.
Looking back on my life, I often was able to thrive in environments that allowed me more control over my environment, where I could lean into my strengths and avoid my weaknesses, and I struggled most when people expected me to ‘overcome‘ my difficulties or fit myself into existing systems (instead of flexing the world and systems around me to fit my needs).
Had I not been pushed into a job that burned me out (because it expected me to conform and treated my weaknesses and needs as problems to be solved instead of supported, expecting me to be more like my peers) in my mid-20s, I might never have learned the truth about my brain.
The analogy about mashing a square peg into a round hole comes to mind when I reflect on this experience.
My peers were all round pegs, easily fitting through round holes, and I was berated for being the ‘wrong shape‘ so frequently I began to blame myself for being unable to be something I was never going to be able to do (without proper support).
My employer was so focused on the “how“ the work would be done and on everyone following the same process to do that work (fitting through the round hole) that they could not see that the end goal was getting to the other side, and that there might be other pathways to get there.
Unfortunately, many employers fall into the trap of focusing more on their processes than on the quality of the final work product.
Many (but not all) of my teachers in school had been this way too.
In school, there had been classrooms I thrived in and classrooms I struggled in.
I often did best in classes with flexible teachers, or that caught my interest or played to my strengths, but even my best subjects could become areas of struggle when I encountered inflexible teachers.
Teachers who cared more about ‘how‘ I got to the right answers than about the fact that I actually got the answer right frequently posed significant obstacles for me (math teachers who needed me to ‘show work‘ when I did math in my head, teachers who expected me to sit still and look at them when they were talking, or who took personal offense when I doodled in class), by expecting me to fit into their molds.
I’m also ADHD, but similar to Autism, I didn’t know about my ADHD growing up.
Part of my ADHD experience in school (and even now) is sudden extreme drowsiness when faced with activities that don’t interest me.
There were a few things I learned early on (without even knowing I had ADHD) that would keep me awake.
Depending on the class, I could easily read a book or draw while a teacher was talking and still take in the lessons (in fact, sometimes reading and drawing were the only things keeping me awake in some classes), but this seemed to enrage some educators, who found this disrespectful.
Snacking or sipping a soda would have kept me awake, too, but no food and only water were allowed in the classrooms (and some teachers wouldn’t even allow water bottles in class when I was growing up).
Years later, I’ve learned that for me, drawing, reading, moving around, drinking caffeine, and eating were tools I was using to help me regulate thedopamine levels in my ADHD brain, which were clashing with my teacher’s boring lessons.
Once my books, drawing materials, or snacks were confiscated, the heaviness would quickly sink over me.
Before I knew it, I would find myself unable to keep my eyes open, only to be jostled awake by the loud slam of a frustrated teacher dropping a huge textbook (or pile of books) on my desk or the floor next to me.
Teachers took me falling asleep in class very personally, but if they’d let me do things my way (drawing, doodling, or snacking), I would have been able to stay awake. I might have even gotten better grades.
Even without having the language for what was going on with me, before my teachers intervened, somehow I knew what I needed to thrive.
Unfortunately, from an early age, I was discouraged from taking care of myself appropriately, expected to conform to societal norms, and then blamed when I fell short of the expectations placed upon me (despite not having my needs met).
School, for me, was a big part of what disconnected me from my internal compass.
Teachers who insisted they knew what was best for me and dismissed me when I tried to take care of myself, telling me what they felt I needed (and that what I knew I needed was wrong) became a toxic norm that would follow me into adult life – something I would have to contend with when I was finally diagnosed Autistic a few months before my 30th birthday and ADHD a few years later.
When I finally learned about my multiply Neurodivergent mind, looking back at my life, I was angry about all the ways I’d been blamed for struggling (largely due to ignorant people who had unreasonable expectations over the years), and saddened by how I’d been painted as the problem (when the problem actually had been people who were trying to fit me into their narrowly defined boxes of success).
Would it really have been so horrible to let me eat my Flaming Hot Cheetos, read, or draw while the teacher was talking? I wasn’t hurting anyone (except my teacher’s fragile ego).
Had I been able to do what I needed to do, I might have thrived in school, but I never had a chance, given how things were set up.
ADHD stands for attention-deficit/hyperactivity disorder – ‘deficit‘ and ‘disorder‘ are right in the name. Still, I probably wouldn’t have ever realized there was anything different about me if I hadn’t been faced with the very restrictive public school system.
I have similar thoughts about Autism.
The medical books say that to be diagnosed as Autistic, one must have “clinically significant impairment in social, occupational, or other important areas of current functioning,” which means, by definition, one cannot be Autistic without struggles. This language is something I’ve struggled with over the years because it frames the Autistic ways of experiencing the world and doing things (like our ways of communicating) as deficits, with non-autistic people as the “norm“ and us as “other“.
What does it mean if someone fits all the other criteria without struggling in a ‘clinically significant way‘? Are they not Autistic?
This is the question that keeps me up at night.
Does a lack of ‘clinically significant struggle‘ mean a person is not Autistic? Or does it just mean we’ve finally found the right support system?
You can read the rest of this essay and find out what I’ve learned about the role of privilege, burnout, and what ‘thriving‘ actually means for a Neurodivergent person by becoming a subscriber on Patreon or Substack.
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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Learn more about how I use it here!
I get requests (that I mostly ignore) to do brand partnerships all the time, because I don’t want to partner with products unless I actually find them useful and high-quality. I also want to work with brands whose owners and processes align with my personal standards and ethics.
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Also, if you ever join a 7am CST wakeup call, or pop into an un-hosted Quiet Owl session on a week day, you might bump into me.
Not sure if Focused Space is for you?
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