This blog post has been a long time coming.
Three years in fact. I’ve pondered and drafted and even scripted it as a YouTube video, but in the end I always put it off. Now is the time.
Why?
Keala’s workshop performance of “This is Me” was the spark that finally set this into motion.
So here goes…
I’m autistic.
If you know much about how ASD presents in females you’re probably not surprised.
But if you’re picturing the kid from Parenthood you might be.
That’s because autism is different for everyone. Its not simple and it defies tidy boxes and definitions.
Which is why its called a spectrum. If you know one autistic person you know one autistic person. And the next you meet will likely be vastly different.
I’ve decided to share because it is a big part of what makes me… me.
And because if those of us who can mask as neurotypical continue to do so, the understanding of autism will remain narrow & stereotypical.
In the spirit of sharing, here are some of my aspie traits.
Please remember that everyone on the spectrum will present differently.
1. I have sensory processing issues.
Showers are torture to me. I live in t-shirts because restrictive clothing drives me up the wall. And I struggle to understand conversations when music is playing.
This is because my nervous system is highly sensitive and my brain has trouble processing sensory input. So I experience sensations more intensely than most people. Just think of the Princess & the Pea. No matter how many mattresses you stack up I will still feel the pea. The same goes for sound. Or light.
Which is why I’m forever squinting or blinking in photographs.
Yes, I did have a brief foray into t-ball, but was more interested in stomping ants than chasing balls.
2. I am a big collector.
Keys. Coins. Books. Mugs. Teapots.
Growing up I collected Barbies & never took them out of their boxes. (If you’re curious they are worth less now than when we first purchased them so it wasn’t a brilliant money making strategy.)
3. You might think I’m a control freak.
During my diagnosis I realized that a lot of my “flaws” are actually coping mechanisms.
Because I can’t always read social situations…
Because the world can often seem too bright / too loud / too much…
Because of my social anxiety…
I constantly run a little computer program in my brain that is analyzing what is happening and determining what to do. I thought this was completely normal, but apparently it isn’t.
This constant analysis can be exhausting so I really prefer to know what is happening in advance. Having structure and following a plan helps me feel safe and capable. Even the smallest changes can really be a struggle and potentially cause a complete meltdown or shutdown.
This is why I’m not good at spontaneity, why I want to know all of the details in advance, and why I probably won’t say yes to a last minute invite.
4. I am deeply passionate about certain topics.
The official term for this autistic trait is “special interests”, but I don’t think that conveys the depth and intensity with which our interests manifest.
For example… when I become interested in a creator’s work I love to consume all of their content in chronological order. I have done this with several authors and filmmakers including Joss Whedon, the Vlogbrothers, L. M. Montgomery, the Michalaks, and The Wizard of Oz (did you know L. Frank Baum wrote a whole series of Oz books?)
I’m also a huge nerd for Sarah Bernhardt, Buckminster Fuller, Doctor Who, NaNoWriMo, and The Wheel of Time (among other things).
Some of my newest interests (I’m always developing more!) are around botany, gardening, and herbariums.
5. I am socially challenged.
As a teenager who still collected dolls, and was more interested in books than boys (this can be an autistic thing too) you can see how I would struggle to make friends my own age. During those years I formed close bonds with my adult mentors and literary heroines like Eilowny, Egwene & Emily Starr &.
When I started college I thrived in its structure. I was connected with other people who were passionate about the arts so I could relate to my classmates as Stage Manager or Dramaturg instead of Sarah.
See below… I often sat on the side making notes while everyone else was on stage. I’d finally found a way to be involved even while being apart.
Since graduating I’ve found it harder than ever to make friends, but am learning this may be a common experience for many adults in our current culture. (This is a great podcast episode about friendship & loneliness.)
So I’m quite thankful for you.
For connecting online. Where I can collect my thoughts and present them as blog post, or video, or IG post… whichever form they seem best to fit.
One more thing…
The harder stuff (meltdowns, shutdowns, negative thought spirals, and the state my teeth were in until quite recently) isn’t easy to talk about.
So please don’t come away with the idea that ASD is just being quirky and sensitive. This is just the tip of the iceberg.
Even so… weighing it all together I wouldn’t change it. Autism isn’t something to cure or prevent. Our brains just work in a different way. And while that can present challenges (in a world designed for neurotypicals), it can also be a good thing. Many inventors, artists, and paradigm shifters were and are on the spectrum (even if the diagnosis didn’t exist at the time.)
BOUNDARIES
Update 5/22
I have set new boundaries around autistic content. I don’t use autistic hashtags or keywords because I make this content for YOU - my community. If you have a (safe) friend who would benefit feel free to share this directly with them. But I ask that you DO NOT share autistic content to social media feeds (Insta Stories, FB, etc.) I don’t want to risk this going “viral.” I have seen neurotypical mothers bully autistic adults and I do not want to invite that on myself. I also don’t want to attract followers who expect me to be a autism educator and activist. I just want to talk about my art and my writing and share a bit about life and neurodivergence when I have the bandwidth to do so. Thank you for respecting this boundary.
Learn More
I’ve also updated my list of autistic resources. You can now find them here.
This was a very vulnerable post.
I’d appreciate your support in comments here (or on Instagram).
If you don’t know what to say you can do what my psychologist did and simply say “Congratulations.”
Thanks for listening.
P.S. While I welcome honest curiosity I am not here to prove my diagnosis or debate anyone. Unkind comments will be deleted. Please treat me and all other commenters as you would sitting on my patio with a cup of tea.
P.P.S. This was inspired by Kate Laing’s Bravery Mission (a project for anonymous stories of bravery). It’s definitely taken some lion courage to be vulnerable enough to share this here. Thanks for your support.
Note: I no longer use the term aspergers and this post has been edited to reflect that.
Originally posted on Kindle Curiosity March 9, 2018.