Understanding Level 1 Autism
Living on the Spectrum with Sensory Overload, Chronic Pain & a Sense of Humor
So... What Is Level 1 Autism, Anyway?
If you Google “Level 1 Autism,” you’ll probably get a super clinical description: “Autism Spectrum Disorder requiring support.” Cool. It's not exactly helpful unless you already speak DSM-5.
So here’s the translation: Level 1 Autism is a form of autism where you can often “pass” as neurotypical—until you can’t. People like me may not need 24/7 care, but we need understanding, accommodations, and support. The outside world might see us as “high-functioning” (a term I don’t love), but they don’t see the energy it takes to survive in a world that isn’t built for our brains—or our bodies.
Spoiler: it’s exhausting.
My Late Diagnosis: Turns Out I’m Not Just “Too Sensitive”
I always felt different—not in a “special snowflake” way, but in a “why is everything so loud and confusing?” kind of way. I mimicked what I saw other people doing—smiling at the right time, nodding like I understood small talk, laughing at jokes that didn’t make sense. I had no idea that what I was doing was called masking; I just thought I was “bad at people.”
School? Fine, I guess. I did well academically but was constantly overwhelmed, anxious, and socially awkward. My teachers thought I was just shy. My peers thought I was weird. And I thought there was something deeply wrong with me.
It wasn’t until adulthood—after a spectacular burnout and years of feeling like I was living life on “hard mode”—that I learned I’m autistic. Level 1. Neurodivergent. And suddenly... so many things clicked into place.
Sensory Sensitivities: The World Is Too Much, Thanks
Let’s talk about sensory issues because they are a massive part of my life.
People think autism is just social awkwardness and being obsessed with one topic. And yeah, I could write you a 30-page essay on a niche interest with no warning. But what rules my day-to-day life? SENSORY STUFF.
Take showers. For most people, they’re relaxing. Spa vibes. Self-care.
For me? Literal torture.
The sensation of water hitting my skin feels like thousands of needles. It’s not refreshing, soothing, or painful. I prefer baths or awkward sponge baths because being rained on by a faucet feels like an Olympic event in pain tolerance.
The same goes for clothing. Tags? Nope. Seams in socks? A betrayal. Itchy fabrics? A war crime.
Touch is... complicated. If someone hugs me unexpectedly, I flinch. Not because I don’t like them—it just feels too much. Sometimes, even a light touch hurts. A brush on the arm can feel like a slap. It’s hard to explain this without people thinking I’m exaggerating, but if you know, YOU KNOW.
Noise? Don’t get me started. Crowded stores, overlapping conversations, buzzing lights—my brain becomes scrambled eggs. I wear noise-canceling headphones like a fashion statement. Sunglasses indoors? Yes. I will look like a hungover rockstar at Target to avoid a migraine.
Executive Dysfunction: My Brain Has 37 Tabs Open, All Frozen
Let’s add executive dysfunction to the mix.
Imagine trying to do something simple—like clean your kitchen. You walk in, see the mess, and suddenly, your brain decides now is a great time to panic and shut down. You want to do the thing, but there’s a wall. And no matter how much you tell yourself to do it, your brain is like: “...Nah.”
That’s executive dysfunction. Starting tasks is hard. Finishing them? Ha. Switching between tasks? Forget it.
I rely on lists, timers, visual schedules, and my dog's occasional motivational pep talk (he doesn’t respond, but it helps).
Comorbid Conditions: As If Autism Wasn’t Enough
So here’s the kicker. I’m not just autistic. I also have POTS (Postural Orthostatic Tachycardia Syndrome), EDS (Ehlers-Danlos Syndrome), and MCAS (Mast Cell Activation Syndrome).
I hit the comorbidity jackpot. 🎉
POTS makes me dizzy when I stand up. My heart races like I’ve run a marathon, even though I’ve just walked to the fridge.
EDS means my joints are hypermobile, my connective tissue is wobbly, and everything hurts more than it should. Bonus: frequent dislocations and fatigue!
MCAS is like my body having allergic reactions for fun. Random hives, nausea, food sensitivities—my immune system is dramatic and lives in chaos.
Together, these conditions make everyday life... complicated. I deal with chronic pain, frequent ear and sinus infections, migraines, GI issues, and a weak immune system. I can feel run down just from existing. Sometimes people say, “But you look fine!” I smile and say, “Thanks, it’s the mask.”
The Mental Load: Anxiety, Burnout, and Feeling Like a Wi-Fi Signal
Discuss mental health because it’s not all quirky traits and sensory quirks.
Anxiety? Constant companion. Socializing is hard because my brain doesn’t auto-translate all those little nonverbal cues. I’m analyzing tone, facial expressions, and body language to solve a Rubik’s Cube mid-conversation.
Burnout? Yep. Happens when I’ve masked too hard for too long, pushed through sensory hell, or forced myself to be “on” when I needed downtime. It’s like my body and brain go nope and shut down.
I describe myself as having a spotty Wi-Fi signal. Sometimes, I’m functioning well; sometimes, I buffer for hours, and sometimes, I disconnect.
Empathy? I Have Too Much of It
There’s a myth that autistic people don’t feel empathy. Let me tell you—that’s not just wrong; it’s offensive.
I feel too much. I absorb other people’s emotions like a sponge. I feel it in my body if someone near me is sad or stressed. Sometimes, I cry at commercials. (Yes, even the dog food ones.)
The issue isn’t a lack of empathy. It’s the struggle to process and express it the way neurotypicals expect.
Living Authentically (Or at Least Trying To)
Getting diagnosed didn’t magically fix everything. But it gave me a lens to understand myself. Now, instead of thinking, “I’m broken,” I think, “My brain just works differently.” I advocate for myself more. I take sensory breaks without guilt. I say no to events that drain me. And I’ve built a life that works for me—not some imaginary version of me that fits other people’s expectations.
And most importantly? I’ve stopped trying to mask all the time. If I stim, I stim. If I need to wear headphones, I wear them. If someone thinks I’m “too much” or “too sensitive,”—that’s their problem.
Final Thoughts
Living with Level 1 Autism isn’t always apparent from the outside. But under the surface, it’s a nonstop dance between adapting to the world and protecting my nervous system from collapse. It’s hard. It’s lonely sometimes. But it’s also beautiful, honest, and full of moments of deep connection—when I can be fully myself.
So if you’re autistic, suspect you might be, or love someone who is, give grace, ask questions, respect boundaries, and above all—ditch the stereotypes.
Autism isn’t a one-size-fits-all condition. It’s a spectrum. It’s a journey. And for me, it’s a little bit painful, a little bit hilarious, and a whole lot human.
Stay tuned for Part 2!