The British writer, Alis Rowe, frequently writes about autism. One of her quotes that hit close to my heart: “I can be talkative and expressive when with a single person, but the more people there are around me, the less interactive and more introverted I become. Inside a group of people, I can’t contribute/function, and tend to ‘shut down’ because I find it all too overwhelming.”
I lived that quote during a recent episode where I was in a group setting in a hospital waiting room. I had been in hospital waiting rooms before but it was the first time since learning I had an Autism Spectrum Disorder (ASD). One thing I did differently with the knowledge of my diagnosis was preparing for this gathering. I had my fidget toys like my spinner and cube. I had my smart phone with its many apps. I had no idea how long I would be there and if it went longer than expected, I had my comfort toys with me.
The group consisted of mostly people I knew but there was a dozen of those I hadn’t met before. My typical role in gatherings of three or more is to be the “silent” one. It doesn’t matter if I have known them most of my life or it is my first time to meet them. As soon as I arrived, there were almost a half a dozen people already there. Although I knew them, I immediately went silent. It is as if a mute button is attached to me and it always comes on by itself when I’m in a gathering of three or more.
As more came in, the social chatter and laughter picked up, but I wasn’t a happy camper. None of my topics of interests came up. Except for the one I came with, no one hardly spoke to me beyond the “hello, nice to meet you, or how you are doing, or nice to see you.” I guess maybe I send out “don’t speak to me” vibes without putting effort into it. On the other hand, I was fine with just the greetings. I secretly feared someone might ask me a question I couldn’t or didn’t want to answer.
That old lonely feeling of being an alien from another planet came back. I wanted to “stim” to soothe and comfort myself since I felt like a tea kettle about to boil over. I got out my smart phone and tuned into my favorite apps. I was the only one with ear plugs in their ears. I know it gave off the impression of aloofness but unknown to them, I was in survival mode.
The apps were not enough to soothe the “pain” I cannot describe. I whispered to the one I came with that I was going to take a walk. I used the excuse I wanted to stretch and exercise. Well, that was partly true, but it was far less about exercise for my body and more for my mental state. When I walked outside, I took a deep breath. It was like I had been drowning and managed to come up for air.
I started off my walk with tears rolling down my eyes. If I had let myself, I could have cried like a baby. I didn’t know why at first. I just was overwhelmed with sadness. After a few laps, the tears dried up. My batteries were recharged as they always are after a walk by myself.
When I returned, I saw another person had joined the gathering. The person wasn’t someone I was close to, but he was a sight for sore eyes. I knew he had ASD too! I made a beeline to sit next to him. We exchanged few words and that was okay. It was just having someone else besides me on the Spectrum there. One in a crowd is tough, but two in a crowd is less so.
I think I know why the tears. My ASD is a constant companion and there are times when it slaps me right in the face. This was one of those times when it let me know it is there and it isn’t going to leave my side. There is no cure for ASD. I can’t be like the others. I can’t join in on their chatter and laughter and enjoy it as they do. For me, such gatherings are draining and that isn’t going to change. The mute button will always come on.
Not wanting to end on a sad note, there was a moment during the gathering of an example of how I copy others’ behavior in social gatherings. It was an eye opener because I didn’t realize until after learning about my ASD and being in group settings that some social actions don’t come as natural to me as it does to others.
The room was big but low on chairs. When others entered the room where we were, the one I came with stood up, shook hands, and offered her chair. I first thought, “You mean I have to stand up?” If I had been the only one there, I wouldn’t have stood up. I would have thought, “Hello…” was sufficient. Offer my chair? I didn’t do that part at all. It wasn’t until after I got back home that I thought maybe I goofed on that one. You see, I was operating on the rule of “first come, first serve”.
A British writer who writes about Autism Spectrum Disorders (ASD), Alis Rowe, wrote “I gain a lot of comfort from people who do not expect more time/interaction/activity from me than I can give, i.e. they are able to understand and appreciate that there will be ‘boundaries’ in our relationship and are flexible to be OK with that.'” Those of us who have ASD and have such a flexible friend(s) are blessed indeed!
I was once asked in a psychological test what I picture myself as being in one word. I didn’t have to ponder long on that question. The word “observer” instantly popped up. I see myself looking out the window and just doing that — observing. Sometimes I do that at the shopping mall. Sit down to get a load off and to observe the passersby. Come to think of it, with what I see at the mall, it’s sort of like watching a reality TV show parade.
As an observer, I am mystified by those who socialize and enjoy it. The “enjoying” part is the mystery. I wonder what’s so fun about it when I want to go off by myself and solve a jigsaw puzzle or something. I hear of planning get-together events and I shudder at the thought of an invitation. I know to a neurotypical (NT) that sounds so … what’s the word … I don’t know. But whatever the word, it’s not flattering.
Don’t get me wrong! I don’t secretly desire to live on a deserted island even though I may appear to behave like I do. Even I admit to a need to interact with people. I actually enjoy conversations ever now and then. But like Alis’s quote, on a limited scale. Such as I have a weekly conversation with someone who shares my interest in politics. With all that’s going on in Washington, we haven’t run out of gas yet on that topic. I get rather loud at times on my soapbox and repeat myself but the person doesn’t complain, not yet anyway.
My best way of interacting with my fellow man was, is, and will continue to be writing. I can write down my thoughts, edit them with countless drafts, and when ready to ship, I hit the SEND button. I can’t edit or delete what I say on the phone or in person. It is so frustrating and beyond my ability to stop replaying conversations of yesterday or 30 years ago with words I wish I had said or had not said at all.
Another Alis Rowe quote: What people don’t get is that, even if it doesn’t show, autism is a massive, massive part of me and it leaves me with a lot of reasons (not excuses) for almost everything I do, or do not experience. Autism is the reason I am mostly content doing things that don’t involve other people. It’s not an excuse; it’s just an explanation.
Even within my boundaries, I still want to have a part in having an impact beyond my boundaries. That’s why I blog.
A seemingly simple errand can present speed bumps on the Autism Spectrum. The other day my Mom sent me on an errand to pick up some items at the grocery store. Her list was short but heavy. Three cartons of bottled water, 24 bottles each, is not for sissies to pick up. I didn’t mind since it fit into my “daily step” count on my “Fitbit”. It’s become an obsession to meet my daily goal. By just unloading the water, I got around 500 steps in.
Handling the heavy water load was a breeze compared to taking care of a mere pound of ground beef. Why? I had to go to the meat counter and request a pound from a total stranger known as a butcher. As soon as I walked into the store, I headed for the meat department to get it over with to relieve the tension I had since I left the house. When the butcher gave me the wrapped pound of beef with a “have a nice day” greeting, my anxiety took a hike and I could breathe easy-like.
When I lived by myself for over 20 years, I don’t recall ever making a grocery store trip that included a stop at where the butchers hang out. I didn’t have a desire to learn how to cook what the butcher had to offer but if I had, I still probably would have been reluctant because it would require social interaction.
This is just one example of a puddle in my daily life of living on the Spectrum.
Someone told me long ago that if you can laugh at it, it hasn’t defeated you. I have kept that thought in the back of my mind ever since and I added another: if I can write about it, it hasn’t defeated me either. So that’s one reason since learning I was on the Autism Spectrum at the end of 2016 that I write about it. So with that in mind, writing about it with a dash of humor, here’s some of the cast of characters I live within Autismland for better or worse.
She is definitely a daily character in Autismland. She is a quick change artist – a leg shaker, a rocker, floor pacer, jogger, and fidgeter. This character is a soother for my sensory overload. Good medicine for my anxiety. A character of repetitive motion that helps me focus. Ms. Stimfield is a friendly character I am thankful to have around.
Not so thankful for “The Meltdowner”! The monster of the cast. The ogre may arise over some small aggravation or arrive for no reason at all. At least, the Meltdowner doesn’t come around every day. Its appearance raises the tension in my body to where it feels like an erupting volcano. After its leaving, I am as drained as I would be after being caught in the midst of a noise-filled crowd with little elbow room.
The Escape Artist
Another daily character that is the most mysterious member of the cast. If you came upon someone talking to themselves, pacing the floor and/or performing gestures indicating they are off in another world, you might be leery of the person. I do this but I make every effort of doing it without witnesses. I know if I could see myself on the video camera, my escapism would look strange even to me. No matter, it is a necessity for me. The escape artist has been around since childhood. It helps me cope in a world I don’t understand.
Ms. Chatterbox is a delightful character. She shows up when I’m having a one-on-one conversation about one of my limited list of topics I am interested in. If someone asks me about one of my passions/obsessions, Ms. Chatterbox will deliver a monolog. Since I don’t have too many conversations on a daily basis where the topic is down my alley, Ms. Chatterbox isn’t always around in Autismland. However, I do enjoy her appearance. Unlike the Meltdowner who leaves me feeling drained, she leaves me with a bounce of energy after chatting with someone who shows genuine interest in whatever I’m going on and on about.
To put it simply, Autismland is living alone surrounded by people. I’m most comfortable doing things on my own. I picture myself in public more as an observer than a participant. A worse punishment would be to be amidst people around the clock than to be in solitary confinement. I truly need to have Ms. Solitaire in my daily life such as when I come home from my school classroom assistant job. I love working with the kids and staff but the challenges of social interaction are exhausting. I need Ms. Solitaire to help keep The Meltdowner at bay, if possible. It is Ms. Solitaire who recharges my batteries.
This character makes me think of one word: annoyance. She is persistent in reminding me I have to finish whatever I start. Not only finish, but it is perfect enough that I can walk away from it with nothing left undone. She is exhausting! On the other hand, I’ve gotten many kudos in various jobs I’ve held over my career thanks to being driven by Ms. Perfection.
This is the most useful one of the cast. It prompts me to organize things by color, alphabet, age, genre, etc. It isn’t a chore to organize; it’s a TREAT! I am in a delightful place when the Organizer is at work. The other day I secretly organized my Mom’s kitchen pantry. I did hers because all my stuff is organized and re-organized one too many times. Sometimes the Organizer goes overboard. Anyway, I bet she had cans of food that she didn’t know she had on hand. Since she is neurotypical, I don’t think the pantry will stay in the order I put it in.
Another annoying character but not to the degree as the Meltdowner. Ms. Sensitivity shows up when there are certain noises and smells that raise my anxiety. She is the reason I wear an eye mask at night to avoid the lights coming from my collection of electronic gadgets. She is the reason I have one of those gadgets, my “Alexa” home assistant, to play white noise music to drown out my heartbeat or the snoring coming from another room. Ms. Sensitivity doesn’t kick up a storm when the music playing is my music. But when it is someone else’s music, she will kick and I will feel like a cat whose tail got caught on a chair leg.
This character heavily endows me on a daily basis with doses of “frustration”! I can’t read a page without this character’s interference unless what I am reading is “spellbinding” to me. That seldom happens. Same with watching TV. The Distractor doesn’t want me to watch a TV program on my recliner with my hands folded in my lap. I need to have something to do while watching such as a crossword puzzle or fidgeting with my fidget spinner. Any TV program that can have my undivided attention without the Distractor … well, it seldom happens. Thanks to the Distractor I haven’t been to the movie theater for a couple of years because it doesn’t make sense to pay no small price to sit in the theater drifting off in the Distractor’s la-la land.
I’m sure I left some characters out, but this posting is long enough. There are characters wearing white hats and others wearing black. And, some are not entirely white or black just as Autism itself. It isn’t entirely black or white either.
My first inclination when I see someone in public that I know is to scurry for a hiding place.
I go berserk inside when someone is following behind me or I sense someone’s eyes are feasting on me.
A tiny noise such as someone chewing, sipping, or humming makes me cringe.
Although I despise talking on the phone, have anxiety when the phone rings or a message is left, I bought the newest of a brand of cell phones because I’m obsessed with Android apps.
When a social function is canceled, I respond with “That’s too bad!” and then I CELEBRATE!!
I don’t have to listen to talk radio to hear a conversation. I have plenty of pretend conversation going on in my head.
I owe a debt of gratitude to whoever came up with the idea of the store SELF check-out.
Instructions: “It’s on the third shelf from the top on the left side of the closet next to the package of red, yellow, and green folders. You can’t miss it.” You wanna bet? Just watch me!
I am obsessed with raking or picking up leaves. I have a hard time finding a stopping point UNLESS the neighbor comes outside.
Most of the conversations I plan out in my head never take place.
I was such a jerk for saying that forty-nine and three months ago.
Quadruple check alarm before going to bed.
I’d like to make friends with someone who doesn’t like making new friends. Weird, I know.