What is Autism?, Part 1

This week I received the results from my mini autism assessment (1.5 hours vs 4 hours.) I’m 54 and can create my own accommodations. Not sure if I will get the 4 hour version—I don’t need the official written report for school or a corporate job but maybe it would be nice to see more details. Who knows.

And guess what? It confirmed my suspicions of autism. The info that made my eyebrows raise was this part about “high masking” aka masking of autistic traits:
100 is the average score of a neurotypical female.
124 is the average score of an autistic female.
155 is my number.
Faaaaascinating…

April is Autism Awareness, so I thought I’d do a little series, like an Autism 101 kind of thing because there was so much that I was getting wrong! It is Sheldon from The Big Bang Theory on TV and it is the little boy down the street who is nonverbal and has screaming meltdowns in the grocery store.

And…

That’s the word that has been left out of society’s understanding of autism, “and.” That “and” holds generations of people in the palm of its hand. People who have slipped through the cracks and been missed.

Professionals use the DSM5 (Diagnostic and Statistical Manual of mental disorders) to diagnose autism on the basis of difficulties in two areas, this is the one I’m going to talk about today: Restricted, repetitive, and/or sensory behaviors or interests.

During my assessment I was easily able to talk about sensory issues, which I wrote about here. I often feel like I'm on inside out and have about one billion antennae picking up on everything: temperature, lights that that are flickering or too bright, textures, sound...don't even get me started on sound. It took me 6 months to get used to the sound of the traffic on US 1. I wanted to scream every time I went outside. I can hear it inside too. All this beauty around me but... Funny, when people come visit, they barely notice it.

Being a high masker, I had to dig a bit to think about restricted or repetitive…and some of them didn’t come up for me until after the assessment was finished (which she mentioned might happen and to keep an eye out for.) For instance: having to have certain pillows (8 to be exact!) in certain configurations so I can sleep or having the same breakfast or lunch every day, for weeks (or more) on end. Through my research these last 6 months, I knew this wasn't a typical thing but it still surprises me! If someone would make me scalloped potatoes every week, I would eat them with every meal, every day, forever and ever amen. 😂 Apparently a bunch of you don't want to eat the same things over and over? What? How can that be? I mean, have you had scalloped potatoes??

I was more easily able to articulate the “stims” or self-stimulatory behavior—these are the things that calm the nervous system. (Side note—who in the hell came up with that name? Jeez!) This time the questions gave examples:

“Do you rock forward and back or side to side when standing in line for instance?” Absolutely. My mom taught me! Funny I can remember that so clearly. I was young, elementary school maybe? And I can remember her saying, “Just rock side to side, like you were calming a baby, that helps.” I wonder what I was doing that had her tell me that?!

“Do you pick at or bite your nails, lips, inside of cheeks, pick at your skin, flick your fingernails, twirl your hair?” Yep. Several of those. No one notices if I'm biting the inside of my lips or cheeks or rubbing circles on my thumbnail with my index finger. I didn't even notice until I started reading about late diagnosed women!

It's all a natural response to needing to calm the nervous system. An autistic who is not high masking might flap their hands, spin, rock, or make repetitive noises (verbal stims.). An autistic who is high masking would find other ways that won't make other people uncomfortable. These are more often, but not always, women. Obviously, people pleasing runs high in this second group. The current thought behind why girls and women are so often high masking is societal pressures are different for us. As research continues, it will be interesting to see if that holds true or if there is some quirky little gene mutation that creates it.

Some other pieces of restrictive and repetitive interests:

Watching the same TV shows over and over. Through social media we’ve been hearing the term “emotional support shows," such a good description! Knowing what’s going to happen is soothing. So are shows that are also sweet like Gilmore Girls, Friends, Young Sheldon, The Big Bang Theory. My question again: doesn't everyone do this? I like to have them in the background while I'm cleaning or something but if life is extra, I'll put them on in the evening to sit and watch too.

Music: I like lots of types of music but if I’m overwhelmed I listen to the same song over and over and over again. Somewhere in my brain I must know that is different, because it’s not something I tell people. Until now 😜

All my life I’ve been called obsessive because how much I enjoy spending time in the things that interest me. That’s never been like a happy label. OCD is a common co-occurrence with autism. But obsessive special interests are also an autistic trait. Special interests are things an autistic person is really passionate about. Mine are: animals, art, writing, psychology, natural healing/medical, teaching. Learning is my happy place. I’m happiest when I’m able to focus on these things—either learning or doing. Learning about a new painting technique is just as interesting as actually painting something.

I wish, when I was a kid, that we had known about autistic special interests—I could have thought that I was “passionate” and “focused” instead of feeling "obsessive" and "weird." I’m going to work on reframing my interests in that light because as it stands now, I beat myself up over wanting to do them and often don’t allow myself to do them which leads to a lot of stress. I've only recently learned that special interests are calming to an autistic person’s nervous system and I’m just now, as I’m writing this, realizing that I’ve been burning myself out of life by not allowing myself the things that can calm me. Writing is the only one I insist on but it’s the bare minimum.

So, a lot to chew on this week! I wonder if any of you see bits of yourself in what I’ve written here? I’d love to hear about it if so! [email protected]

And you know I can't let a post go without some memes!