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”.
Whether it is a first-grade teacher or an Ivy League professor, the beginning of the school year or semester is spent introducing students to rules and expectations. When I was growing up, rules were written in chalk on a blackboard. Now in some schools, rules are displayed on interactive whiteboards and typed out using a computer keyboard. The tools have changed, but the rules haven’t changed that much. Such as there’s still the rule that one can’t talk when the teacher is talking and that rule is still a popular one that students break.
I am a retired government employee and my post-retirement job is being a substitute teacher’s aide. I started my fourth school year in a gym class for two days. I heard the P.E. coach’s list of rules 14 times in those two days. It reminded me of playing my favorite song over and over again on my record player back when I was growing up.
The coach didn’t just read the rules out loud; she deciphered them. That was particularly helpful for those who take verbal instructions literally — word for word — a common trait for those of us on the Autism Spectrum. If she hadn’t explained them, some students might be trying to live up to something that wasn’t realistic and/or totally confused when the class was playing tag.
For instance, one of the top five was to do your BEST at ALL times. The teacher admitted that the literal meaning wasn’t realistic. She explained she wanted the kids to do their best with what they had that day. If they were in a fantastic mood with energy to match, they should be at the top of their game. If they were not up to speed, she asked they just do the best they could with whatever energy they had to give. I was glad she explained that because I wasn’t as much an eager beaver on my second day as the first day of being her sidekick.
Another one of the top five school district-wide rules was “Keep hands and objects to yourself at all times.” If taken literally, one would think it was NEVER appropriate to touch someone. That’s a good rule when students are standing in line or sitting side-by-side on the gym floor, but not when playing a game like tag where tagging is, more or less, touching someone. The coach gave examples as to when the rule applies and when it doesn’t. It’s a good rule, but the “at all times” phrase just needed deciphering.
The coach had her own dozen or so rules in a computer document that she read out loud. One of them was one that took me by surprise. I never heard of a coach having the rule of “no jackets in the gym!” The students could wear jackets to school but were not to enter the gym wearing one. Her reasoning behind this rule was that kids might get sick from getting too hot wearing a jacket while doing their exercises and playing games.
This rule gave me an uncomfortable feeling since I was in violation of it. She didn’t ask me to take it off and I didn’t volunteer to do so. I was not working in a hot-boiling gym or even a warm toasty one. It was so cold in the gym that I felt my knees shivering. I mean that LITERALLY! I assume I was given a pass since I was a substitute or maybe the 20-something old coach wouldn’t ask a thin gray-haired lady to take off her jacket.
British author Alis Rowe, who writes about Autism Spectrum Disorder (ASD), is quoted as saying “I’m just not really that fond of ‘socializing’. I’m not saying that I can never have fun being with other people but I just tend to have more fun when I’m on my own!”
I echo that quote. I have oodles of fun by myself. Since I don’t live alone now, I am not lacking in human interaction as I was when I was living by myself. I confess when I have the house to myself, it is like being in Disneyland without being at Disneyland. It has nothing to do with those around me that I prefer my own company. It’s just the way it is with my ASD.
Parties are hard for me to have a good time at, but not impossible. The more people I know, the better the odds of enjoyment. I once had fun at a party get-together with mostly total strangers but I can only recall one of those. I managed by eyeing an introvert who perhaps was just as or maybe more introverted than myself. One of my party coping mechanisms is looking for an introvert at the same party too. If I’m the only one, it’s going to be a long night. I can’t recall feeling sad when the party guests started leaving. That’s usually the best part.
Dating and fun? There are folks who admit to having had both at the same time. I just have to take their word for it.
I confess I have the capacity to chat for an hour or longer with someone where the topic is one that sustains my attention. If the topic ventures to something I know little to nothing about, the fun is over. It’s nap time. I will not nod off, though, because if someone gives me an inch and lets me talk, I should do likewise when the person is on their soap box. That is only fair! I may not hear every word, but I’ll try to keep up the pretense that what is going in one ear isn’t coming out the other. The least I could do for someone who listens to me.
I have another confession. I have actual memories of having honest-to-goodness fun with others. It’s just I don’t have as many of those memories as I have of “me and my shadow”.
Someone asked me what was it like having Asperger’s. I didn’t mind the question. Quite the contrary! I welcomed the question or any question related to Autism Spectrum Disorder (ASD). That’s one reason I write about living on the Spectrum. I can’t speak for my fellow ASD travelers since each one of us on the Spectrum is unique. I can describe my own life on the Spectrum, but don’t ask me to explain it. Those who don’t have ASD can’t understand it and those of us who do can’t explain it.
My anxiety goes up a notch or two when I am given the “PLEASE go get the…, find the…, bring me …, it’s in the…next to the…on the right…”. The longer the instruction string, the least likely the instructor will get positive results from me.
I was helping a friend the other day with an outdoor project and she gave me a few of those type requests in one sitting. The pressure to find what she wanted in record speed put me on panic alert. I did find them but not with record speed and not without my friend repeating or rephrasing the directions. If I were quick on my feet, I would have asked, “Am I getting warmer?” meaning am I getting closer or further from the target of the safari hunt. The items were within a short, I do mean SHORT, distance from me. EMBARRASSING! If there had been a hole, I would have climbed in it until my friend talked me out of it.
Sleeping with five pillows instead of one. A miserable night if I was reduced to sleeping with the standard number of 1 or even 2. It is just one of my long held rituals to be surrounded by pillows at bedtime. I call it, for lack of a better explanation, my comfort food at bedtime.
DIET ROUTINE – WRITTEN IN STONE
My list of what I eat on a regular basis could be counted on two hands. Most of those items are high in starches. Thus, I am a big fan of bread, bagels, dry cereals, crackers, chips, and popcorn. No salt shaker but what I eat has plenty in it. When I eat my meals is beyond my understanding but I stick to my peculiar eating routine like SUPER glue.
GOOGLE IMAGES WITHOUT WORDS
I am in a conversation and have the floor. I am telling a story and come to a point where for the life of me I can’t think of the name of the image in my head. I describe it in a haphazard way where I stutter all over myself. This is the part that frustrates me. A few minutes later, my brain pops the word up. Granted, this surely happens to most people, but in my life on the spectrum, it is the “norm” instead of the exception.
OH CLUMSY ME!
If there is something to trip over, stumble on, tumble over, then one of my toes, feet, or knees will find it. I don’t take daily inventory, but I don’t think I’ve lived a day that I didn’t have a bruise on my person. I’ll only remember how I got a bruise if it hurt so much that I saw lights flashing. It is frustrating to no end when I bump, fall, and trip but I try to take ’em as they come and keep going with bruises galore.
NOT SO FINE ON MOTOR!
Fine motor skills have to do with the small stuff when it comes to movement. This is why my handwriting bears a strong resemblance to chicken scratch. It is why picking up objects between my thumb and finger is no small feat. Such as putting on or off pierced earrings. As hard as I try to hang on to the earring or “back”, it happens without fail of one dropping. The earring is easier to find than the “back” to it. The backs are so small and blend in into the floor that finding one is like looking for a needle in a haystack.
I have come so close at times to give up earrings entirely and forget about my two tiny ear holes. I give in against my better judgment and buy a pack of cheap earrings at the dollar store just to replace the missing “backs”.
WHY DID I SAY ALL THAT?
I meet a total stranger who gives me an inch. I’ll tell the stranger way more than I want to about myself. It was as if I had provided a total perfect stranger a chapter or two of my audiobook autobiography. Shortly thereafter, I’m kicking myself as to what in the world was I thinking telling a stranger my life story.
Those are just some examples of what it is like to have Asperger’s Syndrome. Sometimes I have a no-meltdown kind of day. Other times my autism slaps me in the face and lets me know it’s around and is here to stay.
When I learned I was on the Spectrum, I had my explanation for why I’m not quick on my feet. It also explained why I am physically awkward on my feet. If there’s something to stumble over, bump into, or trip over, one of my limbs will find it. Anyway, my brain doesn’t operate at the speed of a dime. But in its defense, with sufficient processing time, it can come up with a good answer that sometimes even surprises me.
Quickness on one’s feet is a nice attribute to possess. It’s a good quality to have for those whose jobs constantly put them in emergency situations where they do what needs to be done with little or no time to think. I can only wonder what it is like to be able to give a quick and accurate response to a question at the drop of a hat. Or be able to mouth off a “gotcha” answer silencing the asker.
Most folks can identify with being asked directions by a passer-by. I was recently put on the spot when a family driving by asked for directions. The location they were seeking was a place I knew like the back of my head. But they wouldn’t have known it by my hem-hawing. They patiently waited until my brain came up with the right answer. If I had given them an answer off the top of my head, odds would have been good they’d have to ask another stranger.
One of the many things I admire about my Lord and Savior is how He interacted with people when He walked upon this earth. Since social interaction is difficult at best living on the Spectrum, I appreciate how Jesus was a master of it. He interacted with His disciples who sought His teaching, the multitudes who sought Him for miracles, the outcasts who sought His attention, and His enemies who sought to silence Him.
Jesus got lots of questions. Some genuinely wanted His answer such as Nicodemus who grilled him into the night. Then, there were those who were deceptive. They were aiming to use the Lord’s own words against Him.
Such as in Luke 20:1-8 where we find Jesus teaching in the temple when a gang of chief priests, scribes, and elders came to Him posing a question: “Tell us, by what authority doest thou these things? or who is he that gave thee this authority?”
Jesus could have responded with a long answer. He could have gotten into a debate with the group. But instead, he answered with a question: “I will also ask you one thing, and answer me: The baptism of John, was it from heaven, or of men?”
The scribes, priests, and elders weren’t expecting to be put on a spot by a question themselves. They got together and reasoned it among themselves before answering. I picture them in a huddle like they do on a football field. They thought if they said John’s authority to baptize come from heaven, Jesus’s comeback answer might be, “Why then believed ye him not?” If they said John’s authority came from men, the people would stone them for the crowd believed that John was truly a prophet of God.
So they came up with an answer that is still popular to this day. I often use this answer myself. It is a good one to use when it is a truthful answer. It was basically: “I don’t know”. That answer fell right into Jesus’s hands. In other words, the group walked right into that one. The Lord, quick on his feet, just stated: “Neither tell I you by what authority I do these things.”
I never cease to be amazed by Jesus’s answer in this story. In this round, Jesus had the last word. He gave them an answer they couldn’t use against Him. This was just one of a number of times when Jesus put his enemies to shame by His words alone.
It is tempting when confronted about one’s religious beliefs to respond in anger. But doing so may just give the confronter exactly what they want. It is better to give no response than to get in the mud with someone. One doesn’t walk away from a mud fight without getting muddied up him or herself.
Jesus’s answer was short and to the point. Sometimes a few words are best. How does one know what to say on any given day? Pray daily for the words from the Master of right answers.
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.
Below are some of my challenges I have lived with but didn’t know what was behind them until learning Autism Spectrum Disorder (ASD) wasn’t something only someone else had. I found out I was on the spectrum near the end of 2016. This challenging list doesn’t apply to all with ASD because when you’ve met one person with Autism, you’ve met only one.
Rules are not mere suggestions to me. I welcome and need them. In an unstructured environment, I feel as uneasy as a polar bear would on a beach.
Routine is almost as essential as air. I guess it has to do with feeling safe and secure in the world. I do change my routine occasionally, but if it is beyond my control, a change in routine can put me in meltdown country.
Stuck with no means of a graceful escape to hearing music that is pushing all my buttons. I don’t dare complain to the one playing the music, much less scream or cry because it would draw unwanted attention. I must, as I often have to do, pretend I’m just fine while boiling underneath.
It takes me longer to respond to someone. I need time to process what has been said in order to come up with a response. More often than not, I ask for a repeat to give me a few more seconds even though I may have heard them the first time.
I love hardball conversations about any one of my limited interests. Social chit-chat is hard for me to sit through. I often manage by drifting into daydream land if I can’t make a graceful exit.
It is stressful for me to be as busy as a bee or to be bored out of my skull. I love a schedule with the consistent rhythm of one thing after another instead of things happening all at once or nothing happening at all.
Physically and mentally, I’m years passed the half-century mark. Emotionally, though, I am about the same age as the elementary students I work with. I’m reminded of that when I’m behind the steering wheel stuck in traffic. Even though it isn’t the steering wheel’s fault, it is what I take it out on.
I don’t like it being pointed out in a group I am the quiet one. I’ve been a quiet person for more or less fifty years and so it isn’t news to me.
Timekeeping to me is crucial. If it is going to be around noon that someone will show up, I’d rather they say “noon-ish”; please not say noon if one won’t be there before or on the dot.
Highly sensitive! Such as when a check-out cashier says she’s not open. I will beat myself for not noticing the sign that she was closed.
Groups are my nightmares. I always seem to be the square peg in the group of round pegs. I don’t know if I’m more afraid of being spoken to or not at all.
I don’t write about my ASD to complain or seek sympathy; I write to offer empathy to those on the spectrum and to provide knowledge and understanding for those who aren’t.
I have a choice about reading about Autism Spectrum Disorder (ASD) or talking about it or writing about it. I don’t have a choice about living with it.
I was subbing for an elementary school P.E. coach’s sidekick. The first half of class was walking laps outside around the baseball diamond. While the coach watched sitting on an upside down bucket with his speaker phone, I walked the laps. I thought my walking might inspire the kids to walk or run and not hide behind a tree to get out of the exercise. With my gray hair, the kids think I’m the same age as Old Father Time.
A 1st-grade girl came up and took my hand. Unlike me, the girl didn’t have a problem starting and carrying on a conversation. We had an unspoken deal. She did most of the talking and I did most of the listening.
She had a good reason for wanting to talk. Her Grandpa passed away just 2 days earlier. It wasn’t so much sadness I heard in her voice but curiosity. Perhaps it was her first encounter with the death of a loved one. He had strokes and as she put it, “he just died”. She didn’t even know he was in the hospital until after he had passed away. She had observed that her Grandma still had his clothes. Other than telling her I was sorry about his passing, I just listened. She just needed someone to talk to and that someone that day was me.
She didn’t want to go off and play in the playground as the other kids did when finishing their last lap. She couldn’t hold up as long as some of the other kids because of her asthma. It does get in her way sometimes. It is routine for her to use the asthma inhaler as soon as she gets home from school. She said pretty much her whole family had asthma.
I told her I had Asperger’s. The word wasn’t familiar to her and I didn’t go into details about it. She said she can’t run as much as her friends without wearing out. I told her sometimes I am not up to being with people. She said sometimes asthma gets her out of doing stuff she doesn’t want to do such as strenuous activities. I told her Asperger’s sometimes gets me out of going to parties.