What Happens When There’s No Autistic Special Interest: An AuDHD Origin Story
Hi, my name is Shawn, I’m a 47-year-old late-diagnosed Autistic. I was diagnosed in January of 2024, so I’m still a freshy. The diagnosis joined my lifelong diagnosis of ADHD, making me what some refer to colloquially as AuDHD. While researching Autism, I could never find a story I identified entirely with, which made it more difficult to see in myself. By sharing my story, I hope to offer insights that might help others like me.
In my early Autism research, Special Interests were the first trait I read about that made me think, “Damn, I think I might be Autistic.” It feels fitting, then, that this is the first topic to cover after the story of my path to Autism Diagnosis, which you can read here:
The Serendipity Of It All
Special Interests, passions, obsessions, or, my favorite, “Eye Sparkles,” as Chloe Hayden describes them, are an integral part of my life, along with my family. Special Interests are the glint in my eye. At most times in my life, I have an undying interest; it’s the thing I’m constantly thinking about. I read, research, and obsess to the point that I know more about the interest than most experts.
There is always a moment I can trace back to where a Special Interest clicked; sometimes, it’s easier to see than others, and sometimes it’s as clear as day. It’s a difficult feeling to describe. One writer described the feeling as “there is a kind of serendipity to special interests.”
Webster’s definition
Serendipity: The faculty or phenomenon of finding valuable or agreeable things not sought for.
This definition does a great job of describing how Special Interests show up: I don’t find them; they find me.
But how does it feel in that serendipitous moment? The feeling is unlike anything else, but perhaps I can give you the ingredients that make up my feelings toward Special Interests. Try your best to imagine what these feel like, or substitute something similar that fits you:
- The first few days or weeks with a new pet when your undivided attention is on making them feel loved and at home. Picture that warm, fuzzy feeling.
- When studying for a major test or preparing for a big project at work, you study hard to make sure you know all the details and pour your soul into the work. Think about the need for clarity, urgency, laser focus, and the anxiety centered around your desire to succeed.
- Your best comfort moment, a big hug from a loved one, snuggling a pet, reading a book by the fire, or a favorite beer. Whatever it is, take the feeling of safety and serenity inherent in that moment.
Combine those three things, and you will have an idea of what a Special Interest feels like to me. My latest Special Interest is Autism. I remember the very moment it started like it’s written on the back of my eyelids; I can watch the scene playback in 4K Dolby Vision. It was the first time my therapist mentioned Autism. I’ve described it as a thunderclap, but it wasn’t just because of the shock; it was the moment a new Special Interest started.
How They Find Me
Autism as a Special Interest is somewhat of an anomaly in that it doesn’t fit into one of my usual categories. My Special Interests are not random, I have a couple of lifelong categorical special interests that all the more specific/transient interests almost always derive from. I think this synergy of long-term and transient interests comes from an uneasy truce between Dr. Jeckyll (Autism) and Mr Hyde (ADHD) (the story of these two yahoos is for another day). For example, easily my longest-running and biggest passion is for gadgets. So many different types of gadgets have caught my eye over time.
Some examples:
- Home/Personal Audio
- Computers
- Mobile Phones
- Bicycles (yes, these are gadgets)
There have been numerous other gadgets come and go. I study the hell out of them, learn everything about them, and then just as quick as they caught my eye, they vanish. Sometimes after a few months, sometimes a few years. To be clear, it’s not that I don’t like them anymore, quite the opposite, I still love them, but I think my level of interest goes to something a little more “normal.”
Take bikes, for example. I still love them, but they are not my current passion. However, I can still tell you every bike type, model, and brand of road bike made by all of the top manufacturers. More than that, I can tell you the components on each model, who made them, the model numbers of each component, many of the differences between each grade of component, etc. (Unusual Intensity®). I can also tell you what every component is, does and how to maintain it. I read every professional cyclist’s memoir I could find, I learned all the pro teams, the races, the strategies, and the racers. Hopefully, this gives you some idea of what it’s like to have a Special Interest and the depth of knowledge I will attain from one.
Autistic Trait I didn’t know was Autistic
I always have questions about my special interest, but I inevitably run out of sources online and wish to speak to an expert. I go to my local relevant shop only to be incredibly frustrated when there are no “experts” who can answer my super-specific questions.
Autistic translation
There was no one there who had spent the last year reading every component spec sheet, had run gear ratio calculations daily, or was able to talk about cog sizes, shifting intervals, and the impact they have on various terrains.
I’m Into Things, Too!
When hearing about Special Interests, I think a lot of Neurotypical folks might think, “I’m into things too; how is that an Autistic thing?”. It’s the difference in intensity; I will often gain a level of knowledge over my special interest that is unrivaled by most through intense, unrelenting research. Neurotypical folks might also question if there is any value in learning things in that kind of depth, like “Why would I ever want to know that much about bikes? What good does that do? Seems like a waste of time”.
Learning and being passionate about a subject combined with bottom-up thinking (how many of use Autistics think) creates a learning feedback loop. As I continue to learn more and more about a topic, I find many branches and branches from those branches that I then learn about. For example, In addition to all the bicycle-specific details, I’ve also learned about the impact of aerodynamics, rolling resistance, and weight on a moving vehicle as it goes up steeper inclines (Bottom Out Thinking®). I have countless examples of how much I’ve learned from my Special Interests that are not directly related to the interest itself; in other words, there is enormous value in becoming an expert in a subject; it is how I learn.
Anyway, that was a ridiculously long lead into the topic for this post, but I wanted to give an idea of how critical special interests are in my life. So, on to the main topic.
Disorientation In An Unsaturated World
I’m still very interested in Autism, as well as my other interests, but the “unusual intensity” has faded. Many times, that intensity will return; many times, it won’t. When one fades, and another has yet to replace it, I think of these as the “In-between Times.”
So, what does an In-between Time feel like? Well, if “serendipity” is what it feels like to find a special interest, the word for not having one is “disorientation”.
Cambridge Definition
Disorientation: A feeling of being confused about where you are, where are going, or what is happening.
Special Interests give a sense of purpose and a drive; no matter what is going on, there is always that underlying current to fall back on. Without one, everything becomes bland, things lose their sheen, food doesn’t taste as good, and my favorite shows and music lose their sparkle. It’s like I’m walking through a world with the color saturation dial turned down. There is at least one mercy; my wife and my three kitties are always in full color ❤.
Special Interests are also armor against the bad days, the ones where the lights are all too bright, the sounds are everywhere, work is particularly trying, irritability is high, head is throbbing, sleep is garbage, and a meltdown is right around the corner, and life is just generally difficult. On those days, I can immerse myself in my Special Interest which calms me and distances me from the no good awful day, but without one, I’m left floating.
When I don’t have a Special Interest, I am susceptible to so much more: self-control is fragile, executive dysfunction is somehow even worse, and worst of all, my ability to protect myself and the people around me from all of this is significantly reduced.
My work-life is impacted as well. I lose my desire to learn which is a core tenet of my job. I don’t follow up on the details, I don’t even look for them and I don’t think I could see them if I did. As the gap lengthens, I start to lose interest in the people that I work with and their interests, and my motivation plummets.
These in-between times also play into my worst ADHD traits, impulsivity, and impatience. I look for things, I try to find something to catch my eye. I have nothing to occupy my time, so I spend time looking for ways to appease the Mr. Hyde Dopamine Monster, often by making rash decisions and purchasing expensive things.
It’s just an awful feeling. There is an Adam Sandler movie called “Click”. Where he gets a remote that controls his life like a TV. He can fast forward, pause, and mute. He fast-forwards through so much that he ends up older and doesn’t recognize his life. During the times he fast forwards, he goes through life on autopilot, not feeling anything, just coasting. He is shown during these times, and life seems to be happening around him while he is just going through the motions. That’s the closest I think I can describe the feeling.
A Burnout Connection?
As I wrote this post, a connection jumped out at me. The lack of a Special Interest and its impact on me sounds incredibly similar to, albeit to a lesser degree, burnout. Indeed, the last couple of burnouts were preceded by an in-between time, and both times I started feeling better after I found a new Special Interest. I’ll have to think more about this and perhaps write about it.
Duh, The Solution Is Obvious
At the times in life when I’ve been stuck in this in-between state, how have I gotten out of it? Well, as mentioned, sometimes I apparently don’t, and sometimes I burn out. That said, the obvious solution is to find a new Special Interest. The problem though, as I stated earlier, I don’t find them, they find me.
“Why don’t you go find one?” you might ask. I have wished all my life I could control this thing, but alas, I have very little ability to do so. In fact, the only thing I can control is ensuring what won’t be my next Special Interest by trying to choose it.
So here I find myself, stuck in a sticky, unsaturated malaise, waiting for the next big thing to come along and catch my eye…that thing that brings color back to the world, that thing that makes my eyes sparkle. Here’s hoping I don’t burn out or bankrupt myself in the meantime.
(Registered Trademark®): This is my silly way of calling out potential Autistic traits in my stories. As I’m no expert in Autism, or myself for that matter, I’m highlighting them in this way so that you can more easily dig into those aspects yourself.
