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 challenge for me to deal with living on the Spectrum is dealing with those around me who are lax when it comes to rules. I am a firm believer in holding fast to rules instead of breaking them. Thus, I sometimes run smack dab into meltdown country when engaged with those of my fellow kindred who think of rules as guidelines.
An example is if I ever have to give a briefing and it is only to be 15 minutes long. I will not run over 15 minutes if that long. If I am having to listen to someone speaking and their speech is supposed to be over at a certain time and that time has passed, I will feel like I have ants in my pants.
Librarians can relate to this story about borrowers who don’t observe the rule of “date due”. Years ago, I had a library job where I was in charge of borrowing and returning books received on loan from other libraries around the country. I hated this job with a passion! In retrospect after my diagnosis late last year, I can clearly see how my autism spectrum disorder (ASD) had a lot to do with the job being a bad fit. It required more social interaction than my previous library catalog officer position which fit me as comfortable as an old shoe. The other drawback was I couldn’t return a book until the borrower returned it to the library.
Most borrowers did abide by the due date, but there were a few who consistently returned books late. I wonder if late borrowers look upon “due dates” as mere suggestions. Every episode of having to wait for an overdue book to be returned was emotionally draining. I could not relate because the only reason I wouldn’t return something before its due date would be if I was in a coma. Okay, I’m exaggerating but not by much.
My rule-thinking does not turn off when I go shopping. For instance, I take a sign on an express lane, such as “15 items or less”, LITERALLY! I am a frequent express lane shopper since it is my routine not to shop with a need of a cart. If I were a full-cart shopper, one wouldn’t catch me in an express line unless I genuinely didn’t realize I was in one. I am not a happy camper standing in a line behind the person(s) who can’t count or doesn’t take 15 literally (16, 17, 18, items are okay).
Behind the wheel, I can’t say I’m always at or under the speed limit. I just can’t watch the speedometer like a hawk. My ASD doesn’t help make me a prime candidate for best driver on the road either. It’s always a challenge having to do multiple tasks at a time and to be quick on my feet as you sometimes have to be for road survival. But most rules on the road I follow. Such as I move over well in advance to make my exit off the highway. Even if I have to sit in a long line waiting to exit, I will take my place and wait it out too. If I am in the other lane where traffic is backed up because there is a driver(s) trying to merge over at the last minute instead of taking their turn in the long line of traffic waiting to exit, I am in meltdown country taking it out on my steering wheel and floorboard!
Sometimes I wonder what it would be like to take rules less literally. I don’t mean turning into an anarchist, but to not be a stickler on every rule I cross paths with. Such as turning a library book in one day late and see if anything horrific happens. Or clocking in at work, on purpose, one minute late to see if I turn into a pumpkin or not. I’m being sarcastic. The truth is I can only wonder since it just isn’t in my brain’s wiring to thumb my nose at the rulebook.
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.
It isn’t always the big battles on the Spectrum; it’s the little ones too. The little ones are bigger at the time than they are in hindsight. It is in hindsight I can write about them and have a chuckle or two. If I can laugh about any battle, it hasn’t defeated me.
A little one started when my Mom interrupted my blog-writing asking me to open a can for her. I’m not complaining about that. It just throws me for a bit to pause when I’m creating a masterpiece. Arthur (arthritis) makes opening a can with a manual can opener a painful proposition. I figure I better have empathy since Arthur probably already has his eyes set on me in the near future. I come from a long family tree of Arthur’s victims.
This made me think of a battery-operated can opener I had seen at a store having a 20% off sale the very same day. Since I was planning on going anyway, barring a large crowd, I made note of it to look for one. With a small showing of customers at the time I entered the store, I went ahead and bought a red Handy-Dandy battery-operated can opener, one of those As See on TV products. Besides my Mom needing one, I am attracted to a battery or electric gadget like a coin is to a magnet.
I took it out of the package in my bedroom to get the gadget up and running without my Mom knowing a thing. I wanted to surprise her by doing a “show and tell”. That was a good plan but that’s not how it went down. After installing two “AA” batteries, I pushed the button and not a sound was heard. I tried placing it on a can in case the opener wouldn’t work without having something to spin on. That’ didn’t work. I was so frustrated! I don’t give in to defeat easily when it comes to gadgets. I am the “gadget queen” in my clan. After numerous efforts, this “queen” eventually came to the conclusion it was a “lemon” can opener.
I didn’t ask for this battle, but it fell in my lap and I saw it as having two choices. I could toss it and try to forget it; or, I could take it back to the store for an exchange/refund. My Mom would have taken it back to the store without any hesitation whatsoever. Me? Just the opposite. I have a phobia of customer service desks. My first inclination was to do to the malfunctioned opener what I do with party invitations: toss out!
The price receipt, though, kept staring at me. Guilt is another biggie of mine. I came up with an idea to ease my guilty conscience. I’d put it back in the store bag, go back to the store, and if there was a store clerk who seemed friendly enough, I would ask to exchange it. I didn’t want a refund because I wasn’t ready to give up on presenting my Mom with a can opener that would defy her nemesis, Arthur.
I’m proud to say I got up the nerve to approach the customer service desk and asked for an exchange. She took the lemon and dropped the exchange item in a bag with a “have a good day”. I could breathe easy now as I walked out the store after my victory of facing the exchange challenge. I know such transactions come easy for a lot of folks, but not for me.
It was back to the drawing board. The only difference was it was black instead of red. I wish I could say that after the battery installation, the handy-dandy opener came to life. But that’s not how it went down. It wasn’t making a sound either. After repeating what I did hours earlier with the red “lemon” one, I re-dressed it back into its package. I wasn’t sure if I was going to return to the store or not. Two customer service interactions in one day — there’s only so much I can take!
It was aggravating I couldn’t get a gadget to work. I can’t thread a needle, but I know my way around setting up a smart phone, smart watch, etc. I had to try one more time to save my reputation for gadget-fixing. I used a can of chili as my guinea pig. Just as I was about to take my finger off the start button and give in to defeat, the opener came to life. It started its journey around the can lid while I watched in amazement.
This was supposed to be the end of the story. Nope! A few weeks later, the black handy-dandy opener met its fate of a trash can after opening a can of green beans. It did a spin around the lid of the can. The problem was it wouldn’t let go of the lid. They were inseparable! I did manage to free the green beans but I had to toss the can opener with the can still in its mouth.
Now, most people would have given up by now. But I don’t give up easily. I wasn’t about to be outdone by any kind of gadget. I received a 20% off e-mail from a store and I saw this as a sign to go ahead and purchase No. 3. I’m thrilled to say the third one was the charm. As for what my Mom does when she needs a can opener, she still hollers for me and I do the honors.
I am a frequent Dollar Store shopper. The check-out lines are sometimes too long for my liking but I admit three or more people ahead of me is what I consider a long line. I reckon it all depends on your point of view as to what “long” or “short” is.
On one of my shopping trips as I approached the check-out line, I was relieved there was just two ahead of me. The store manager was manning the register. He was checking out a red-headed freckled-faced boy who was grinning from ear to ear. I’m guessing maybe 10-years-old. The youngster had his dollar bills ready and gave to the manager. I had my head down when I heard the manager say in a stern voice, “What are you doing?”
I did not see what happened but I saw the boy’s hands near the gadget customers use to purchase with a credit/debit card. He was probably playing with the buttons. There was what seemed like a long pause and a red-headed slim woman came up who was probably the boy’s mother. She just said to the manager two words, “He’s autistic.”
I felt like an arrow hit my heart since I’m on the Spectrum, too. The manager maybe felt an arrow in his heart, too, because he said in a softer tone, “Oh, okay.” Nothing more was said.
The boy reminded me of the students I work with as a substitute teacher’s aide. It is rewarding to work with students like this boy. It is sad, though, to hear of “shopping tales” that are such a nightmare that parents/caretakers are reluctant or give up taking their child with them shopping.
The incident replayed in my mind over and over for the remainder of the day and into the night. It took me back to my childhood when a 7-11 store manager was correcting me for something I had no idea was wrong. His stern warning left such a mark on me that I still remember it a half a century later.
I watched them walk out of the store. I dare say it wasn’t the first time she had to tell a stranger, “he’s autistic”. It probably won’t be the last either. Perhaps she had left her boy at the counter to see if he could handle paying for something all by himself. He did fine except for the last part. He just needs more practice, that’s all.
The boy didn’t drop his smile the entire time. He seemed oblivious to what had happened. I hope he has no memory of it. But I’m sure his mother did not get off so easy. She was the one who took the hit.