I’m a late diagnosed autistic woman. It wasn’t until my mid-thirties that I learned that I am on the spectrum. This was both a complete shock, and not surprising at all. Basically, I knew countless unique/cool/difficult/odd things about myself. I just did not know that many of them were related!
Enter social media. I had never felt so seen (or so called out) on everything from the way that I process information to the way that I walk, talk, and sleep. Eventually, I saw enough informal evidence to inspire screening and diagnosis.
Here’s my take on five things that I have come to see as part of being autistic.
Unless otherwise noted, the content on this blog reflects my personal experiences and perspectives as a late diagnosed autistic woman. Remember, everyone on the spectrum is unique, and not everything I’ve noticed may apply to everyone on the spectrum.
1. Sensory Sensitivity
I’m 8 or so, and I’m wailing from my vacation bunk bed, “I’m SICK of the SAND!”
I will NOT go back to the beach. My parents are baffled. I love the water, and I am not prone to tantrums. But I still remember the panic I felt at the mere thought of the sand TOUCHING me everywhere. It was on me, and all my things, and no matter how hard I tried I could not be rid of it.
Most years, I did fine at the beach, but for whatever reason, that vacation featured what I now understand to be sensory overload. I have always responded more intensely to smells, textures, and sounds, in particular. I knew each time when my mom swapped blankies on me for laundry day. Imposter! The smell is all wrong! And the itchy pleated uniform pants at my first grade school? No way. I will be wearing my “stretchy pants,” with special permission granted through a phone call from my mom to the school. Also, the seams on my socks…yeah, they better not be crooked.
Discomfort vs. Pain
But it’s more than just discomfort or distraction. After a certain point, it is painful, and I can feel my brain struggling to keep up with my senses. Just the other day, I found myself nearing a meltdown in a crowded restaurant after a busy evening.
The A/C was blasting, and I was painfully aware of every inch of skin exposed to the cold moving air. “BOI-OI-OI-OING!” A couple of children played on an iPad nearby. Every sound from the game caused a pang in my ears, even through my Loops. “When the waitress comes,” I thought, “will I be able to get a word out?” I rehearsed my order in my head and told myself I could always just point to the menu. Thankfully, I soon warmed up with a jacket from the car, and the family next to us left when our food arrived. Warm queso dip acquired, crisis averted.
Moments like this aside, it can also be delightful to be captivated by my senses. My cats’ purrs, the prism effect from the window of my home office, and the feeling of my weighted blanket are all things I see myself enjoying with just as much intensity. In fact, having sensory-friendly items on hand has been a helpful strategy for managing overwhelm.
2. Social Confusion
The most challenging period for me socially began around fifth grade. Priorities were starting to shift from playground games and cartoons to hair, makeup, and clothing. I found myself baffled by comments about my frizzy ponytail and the peach fuzz on my legs. I wanted so badly for these critiques to make sense. If the hair on my legs is bad, what about my arms? They have the same little hairs!
As I tried to get a handle on these shifting social norms, kids also started behaving in ways I frankly did not understand until I watched Mean Girls years later. The compliments I realized later were fake! The three-way call attacks! The complex hierarchy of the lunch room! So much of the communication was suddenly indirect or even manipulative, and I couldn’t keep up.
A New Perspective
Now I understand that I expected others to communicate in the same earnest (or some might say literal) way that I did. I couldn’t fathom why someone would pretend to compliment me, or make up a fake story just for a reaction. These power plays went over my head, and I suspect my straightforwardness sometimes encouraged my peers to mess with me.
I had the most success when meeting people through structured, special-interest types of situations, like marching band, which became a safe haven for me in high school. Infodumping about embouchures was acceptable there, and we had plenty of structured time together to solidify friendships without so much forethought (and perhaps overthinking) on my part.
3. Special Interests
In retrospect, turning up as Spock to the 7th grade trick-or-treat meetup may have contributed to the above social difficulties. Picture Cady Heron’s entrance to the cool kids’ party as a creepy bride and you’ll be on the right track. In a sea of cute hippies (I guess I missed the memo on that), I was unrecognizable in pointy ears and a full face of white makeup.
I have always had very intense interests, many of which were not typical for my demographic. I was happy to pursue Star Trek and Sailor Moon on my own, and did not understand the give and take of interests in friendship until much later. Even today, I am famous in my office for having a cubicle covered in sea creatures, including a school of crocheted jellyfish. I am delighted when this inspires someone to tell me a sea creature fact.
Engaging in these interests helps me feel calm, happy, and engaged. I’m excited to see this coming up in some of the current discussions about the importance of special interests for people on the spectrum.
4. Bottom-Up Processing
Some people think top-down, looking at context and experience as a way to understand details. Autistic people may be more prone to see details first, and then add them up to a bigger picture. I see this in action every day with myself. Here’s just one small example.
A colleague stopped me on my way out of the office one afternoon. “Be careful going home,” he said.
“Careful? Going home?” I thought. “Careful of what? Is something happening? Is there a storm coming? A big event downtown?” Suddenly, it hit me: This was just his way of saying goodbye. After a brief glitch, I answered, “Thanks, have a good afternoon!” And we both moved on.
This is a newer concept to me, but I’m gathering that this type of interaction doesn’t involve so much conscious thought for everyone. I tend to see the individual words, then the context, and this can lead to misunderstandings. I’ve learned, though, that a pause can help me catch up, and it’s not usually long enough for people to remark upon.
5. Managing Mental Health
Is 5 years old too young for an existential crisis? Because I think I was having one from about that age. The central issue: Why can’t I calm down? For the life of me, I could not understand why it felt like something bad was going to happen out of nowhere sometimes. Was I cursed? Having premonitions? To a child’s mind, it seemed reasonable, like something out of a fairy tale.
It wasn’t until college that I learned about anxiety and panic from a clinical perspective. This was an important first step, as I certainly could not do any work with myself until I was able to calm down. Slowly, I learned techniques to ride out a panic attack without spiraling further. I also received my first introduction to quiet sitting meditation, a practice that still benefits me today.
I remember the last panic attack I had in college. It was a fluttery feeling that snuck up on me senior year during Halloween night, and it retreated quickly in the face of my new CBT tactics. Yet even with this newfound access calm, I still wondered: Why, after years of therapy, does this feeling still return so consistently?
Anxiety and Autism
Well, anxiety is a prevalent co-occurring condition among autistic people. For me specifically, I can see how the inability to recognize overstimulation led to a constant sense of something being off. This, in turn, spiralled into panic as I struggled to determine why I was feeling such fear. After all, how could I reasonably have known that the buzzing of the lights, the weird smell coming from the trash in the corner of the classroom, and the loud voices from the hallway were ultimately contributing to such panic, when no one around me seemed upset?
If you experience anxiety or panic, check out organizations like the Anxiety Resource Center, and be sure to follow up with your doctor and/or therapist. You don’t have to go it alone!
Ultimately, being diagnosed as autistic has helped me address anxiety more effectively. It’s an intense relief to use simple tools like my earmuffs and weighted stuffie to find calm after so many years of anxiety. I’m becoming increasingly proactive, too, with seeking these supports out BEFORE I feel that first prickle of anxiety.
To end on a high note, I can also lean into the things that make me happy, like sensory-seeking and special interests (#autisticjoy). I love being me, and I love knowing myself better through my diagnosis.
As always, thanks for reading! If you want to stay up-to-date on the latest posts, and access OM, my free meditation tool, be sure to subscribe.
If you are neurodivergent, or maybe even another late diagnosed autistic woman, what helped you realize? Drop me a comment below.