She’s on the Spectrum but she doesn’t know that yet. She’s 5 years old going on 35. This kindergartner reminds me that if you’ve met one person with Autism, you’ve met one person.
Most students in the autism unit are on the shy side. As one with Asperger’s Syndrome, I am not a chatterbox either. But this child has not met a stranger. It doesn’t matter how long has it been since I’ve subbed in her class. When I walk in, she makes a beeline towards me as if she sees me every school day.
One of her repetitive behaviors is asking people their name over and over again. The teacher warned me about this the first time I had laid eyes on her. The teacher and classroom aide advised me not to answer every single time she asks. I didn’t but my silence didn’t dissuade her from asking every half hour.
When I escorted her to and from gym class, we passed by several teachers. There wasn’t a single teacher she didn’t say hello and give a hug. She knew all the teacher’s names. I’m good at remembering faces, but names? Forget it! I asked the teacher when we returned from the gym if the child knew every teacher on campus by name and she said with a smile and a wink, “She’s working on it.”
The last time I was with her class, she repeatedly asked not only my name but my mother’s name, my brother’s name, etc. Finally, I turned the tables on her and asked her what was her name. Her answer: “NOYB”. I said what??? She said, “none of your business.” Okay, she is a smart aleck too, but an adorably cute one.
On my job as a substitute teacher’s assistant, I have the privilege of working with children who inspire me. Such as inspiring me to do less complaining and more thanking.
I celebrated my 59th birthday last October. I haven’t been a hospital patient since my grandmother carried me out of the hospital into the world. Hospitals are full of children who are not so fortunate. I have crossed paths with school children who know a hospital bed as well as their own bed at home. A sweet boy who survived a transplant at five will say whenever he gets so much as a sniffle, “I’ll probably have to go to the hospital for this.” Sometimes he does.
On a P.E. assignment in the gym, I saw one of the aides with one of his wheelchair-bound students. I teased the aide in saying, “There’s my favorite fella”, while rubbing the little boy’s head. The aide said, “Hey, what about me?” I assured the aide he was a favorite but the young fella was a special one.
The aide released the youngster from his wheelchair so the youngster could crawl around. He can’t stand on his own two feet without a pair of hands holding him up. He can’t say a word but he does make his own unique noises now and then. I met him a few years ago and he walked into my heart. I always look forward to visiting his class because his smile will give my heart a lift.
He has many limitations that prevent him from being in the mainstream. The Good Lord only knows if he’ll ever say his first word or write one. The odds of him not needing the wheelchair are not good. I have often wondered why it is that I was blessed with good health and someone like my little friend can’t use his legs to walk, run, and play. I do believe with all my heart that when its time for him to leave this earth, he will go to a place where he will have no need of a wheelchair and have full use of his legs.
He has won the hearts of his classmates who all have their own challenges too. Challenges that keep them in special ed classroom for however long they need. If he drops a toy, one of them is glad to pick it up. He’s not a burden, he’s one of them.
Outside the classroom, it is different. He is sometimes met with stares. The wheelchair seems to blind their view of the boy who resides in it. If a student gets out of line with staring or laughing, he or she is in big trouble if the boy’s teacher or one of the aides are within sight or earshot.
I don’t know what my favorite fella knows about his being different. He isn’t able to talk about what is on his mind. He has to depend on others to care for him and speak for him. He seems as far as I can tell to be content in the classroom playing with toys that make noise which he puts up to his ear.
I don’t think he would want my sympathy. If he could, I think he would say that a smile would do. One shouldn’t underestimate a smile. My favorite fella’s smile inspires me to do the same.
In the Book of Matthew, 6:27 and Luke 12:25, Jesus asked which of you by being anxious can add a single hour to one’s span of life. I admit if my worrying could extend hours to my lifespan, my lifespan would be mighty stretched. Worrying is something I confess I do even though all it gives me is wrinkles, lines, and no solutions.
Worry is a sure sign I am failing in the “faith” department and accomplishing nothing. Someone named Van Wilder said that worrying is like a rocking chair. You can sit yourself down in that chair at sunrise and rock in that chair until the day is done. Come sundown, you’ll still be where you started. That’s as far a distance as worrying gets you too.
One of the hardships of living on the Autism Spectrum is anxiety. ( My own personal nickname for the Spectrum is “Billy”). Tony Attwood, a leading authority on Asperger Syndrome, sees those with highly-functioning Autism, or Asperger Syndrome, managing anxiety as a daily part of their lives. According to conservative estimates, 65% of adults with Asperger’s Syndrome suffer from anxiety and depression compared to 18% of the general population. I’m one of those in the 65% who takes medication for it.
A popular prayer that often comes to my mind is about accepting the things one can’t change, the courage to change the things one can, and the wisdom to know the difference.
I can’t change having Billy around and the baggage that comes with him. He can be good to have around but sometimes, I wish I could divorce him. For instance, I can’t shoo away meltdowns. I can’t wish away anxiety pangs that have no rhyme or reason to them. Fortunately, since taking my medication, such pangs are fewer and sleep isn’t a challenge as it used to be. I can’t rewire my brain to turn into an extrovert and thrive on being around people rather than thriving on being alone. I can’t help it that I can’t process verbal instruction as fast as others. I can’t help it that a change in routine puts me in a tailspin. I can’t help it that I need to pace the floor and retreat to my fantasy world to cope with a world I don’t understand.
Prayer is always a good place to start with the coping process. That’s at the top of the list of tools to knock off worry. Take meltdowns, for instance. When one comes, I can do something about it such as finding an area of refuge, stim as much as I need to (pace, jog, rock, etc.), with a prayer on my lips. I can’t prevent their coming, but I can choose to prayerfully weather them through and not to worry about when the next one is coming.
In my better moments of thinking, I see Billy as a daily opportunity to live my faith. He is something I either can choose to worry about or not. Worrying won’t make Billy go away any more than not worrying will either. But I’ll have more peace of mind and more fun by not. Even better, I’ll be living my faith in the Lord which has the added advantage of having a closer walk with Him.
I’m fortunate to have a job where I work with teachers who teach children with an Autism Spectrum Disorder (ASD) and with the students themselves. I have a teacher’s empathetic ear to my own ups and downs of living on the Spectrum. The students with ASD are my fellow Spectrum travelers. Helping students whether they are in general or special education is therapeutic. The icing on the cake is I earn a paycheck and receive therapy at the same time.
It is always a treat to have an assignment at the school where I initially suspected I had ASD. The specific behavior of one of the students was the light bulb that led me to my diagnosis near the end of 2016. Seeing her reminds me of the impact she unknowingly had on me. She can’t hold a conversation but she does know me by sight. To say she is special is an understatement.
One of my assignments at this school took me from classroom to classroom working with special ed students who attend general ed classrooms. I spent a little time with a 4th grader who needed assistance with getting around. She can’t use stairs and so one of my chores was to escort her up and down the elevator. She is so determined to be independent! I think she could have operated the elevator with her eyes closed since she has to use it so much.
One of the staff has the job of taking special ed students out of their classroom and holding one-on-one or small group sessions. We had a couple of conversations about ASD since her son was diagnosed at a young age of having ASD. I told her of my own ASD behaviors/obsessions and I didn’t tell her anything that surprised her. My behavior and that of her son was more alike than different. She cited examples of her son’s traits/obsessions and it sounded all so familiar. I was uplifted by this conversation. I could talk to this lady for hours but when it was time to sign out and go home, I did since I had to stick to my routine. The teacher did say something that I took with me and inscribed in my heart:
“I have the perspective of a parent with a child who has Asperger’s. I have the perspective of a sibling who grew up with a brother who has severe Autism. I teach children who are on the Spectrum. But you have a bigger perspective. It is your life!”
I understood what the teacher said about it being my life. It affects every aspect of it. If I could somehow even for a short time separate myself from my ASD, I don’t know who I’d be but it sure wouldn’t be me.
Linda Jones, an Autism advocate, once stated: “Whereas other people seem to be looking FORWARD to ‘the event’ – they don’t seem to realize that we’re looking PAST the event, trying to assure ourselves that it will be over soon and the routine-day after will be a relief.”
That sounds all too familiar. I remember several years ago driving to a holiday party at a friend’s house. If my steering wheel could have talked, it would have yelled: “Get a grip and loosen the grip on me!” It didn’t matter it was a friend I had known for years. It didn’t matter there were others at the party I knew. It didn’t matter that I had been to my friend’s house a number of times. This was contrary to my routine going to a party and I was eager for its ending instead of the beginning.
Any type of gathering type event is a jolt. A threesome having lunch, a holiday gathering, a meeting, etc. The gathering is a storm cloud on an otherwise sunny day. Once I can go back to my solitary corner, I’m back on the track of normalcy which is where I ache to live on.
I reckon I could survive solitary confinement longer than others I know who relish the thought of get-together type events. There’s nothing wrong with hanging out with friends but I just don’t have the desire to and it’s beyond my understanding watching people enjoying doing it. It’s like observing, from a distance, life on another planet.
In the Bible’s four Gospels that give us the story of Jesus’s walk on this Earth, He had to interact with large and small groups to go about His Father’s business. He attended events such as a marriage ceremony at Cana where he turned the water into wine. He taught multitudes of people such as the 5000 men, plus women and children, whom he fed with His miracle of the loaves and fishes. He had dinner with a group of people at the home of a Pharisee named Simon where Jesus allowed a woman who lived a sinful life to pour perfume on His feet. But it wasn’t unusual for Jesus to go off alone by Himself, such as to a mountainside or a garden. It is of comfort to me that even Jesus needed to take a break from people and gatherings and go off by Himself at times. Just maybe not every day like I do.
Jesus was unlike any other human being who ever has or will walk upon this Earth. Even those closest to him, such as His disciples, could not entirely know what Jesus was going through. It’s understandable that He needed time alone with the only one who could — the Father.
One of the times Jesus had lone time with His Father was His visit to the Garden of Gethsemane before He was betrayed by Judas. His disciples went with Him but they couldn’t keep their eyes open and fell asleep. Jesus was in agony with drops of sweat like blood. That time alone in the Garden having a talk with His Father about what no one else could have understood helped prepare Him to ultimately do his Father’s will.
There are things about my ASD that I can’t talk to anyone about. Too embarrassing or beyond my understanding. But I can talk to the Lord about those things and so I do. Sometimes I do it when I take a walk in the park. It’s not a garden but it will do.
When I began subbing as a teacher’s aide in my hometown school district, I thought that the last school I’d want to take an assignment at would be the elementary school I started attending when Lyndon Johnson was President. I have a heap of memories and not all of them are good ones. I tend to reflect more on the bad than the good. I didn’t know I had an Autism Spectrum Disorder (ASD) when I was attending elementary school since I didn’t have an ASD diagnosis until after I turned 58. Since being formally introducted to my constant companion, I now reflect on those elementary school years with a different pair of lens.
After a couple of years of subbing, I did get up the nerve to take an assignment at my Alma Mater. The main part of the building and the cafeteria are still there. Of course, memories flooded back as I walked the hallways. I wondered if the classroom I was working in was one that I had spent one of my school years. My report cards had many “A”s and a few “B”s. If there was ever a “C”, I don’t recall it. I recall being the teacher’s pet in 5th grade and being such only made it a lonelier school year for me. I don’t recall any friends because I don’t recall having any.
I recently subbed for the school’s P.E. aide. It was a good day. The highlight of my visit to my alma mater was an encounter with a 6th-grade boy. The game of the day for his class was tag football. He wanted so much to play with his classmates but a brace on each leg was too much of an obstacle. He was given a football to play with by a kind classmate. He fell while trying to kick it and I walked over to help. I asked him if he wanted to play with me and he took me up on it. We played catch and then switch to kicking the ball back and forth. His braces didn’t get in the way of throwing a pass I could catch or kick a ball an honorable distance. He told me when he got tired. I could have played more but I didn’t tell him that. I hope he had as good a time playing with me as I did him.
The staff at my alma mater are so kind. So many of them are not shy about saying “hello” or “thanks for coming”. I ran into the Principal who thanked me for coming at the end of the school day. I told her that her school was my alma mater. She lit up and said, “Then, it must feel like coming home.” I nodded and told her that it is hard to believe that Lyndon Johnson was President when I started elementary school. I kind of wish I hadn’t said that. In other words, I walked right into that one. She said in a nice way, “Oh, that was a LONG time ago.” I said with a sigh, “Well, you didn’t have to put it quite that way.” This time my humor wasn’t way off. The principal of my alma mater wasn’t rolling on the floor but she wasn’t far from doing so.
A neurotypical asked me, “Why is Autism more diverse than any other disability?”
Well, in the first place, I don’t call my Autism Spectrum Disorder (ASD) a disability. It is more like a two-edged sword I live with. It is both an asset and a liability. Such as I can see details that others miss, but I usually can’t follow verbal instructions without hearing them again at least once, if not twice
I do understand the diversity of Autism being confusing to those who don’t have ASD. It is confusing even to those of us who live on the Autism Spectrum. I totally agree with the popular statement that if you’ve met one with Autism, you’ve met just one.
Autism, or ASD, is a range of conditions such as social awkwardness, repetitive behaviors, speech and nonverbal communication, as well as unique strengths and differences. There is not one Autism but many types, caused by different combinations of genetic and environmental influences.
The reason “spectrum” is part of the title is there is a multitude of challenges and strengths in variation possessed by each person with autism.
I am often assigned to autism units when subbing for a teacher’s assistant. I see this diversity in every unit. There are those who have no language capability and some of those who do but seldom use their words. Such as a sixth-grade girl who can speak but seldom does. She’d prefer to answer a question with a nod of yes or no instead of words. There is probably not a school day that goes by that she doesn’t hear her classroom or speech teacher say, “Use your words.” On the other hand, I’ve worked with a 5th-grade boy who is a chatterbox. I don’t know what keeps him from having laryngitis. Thanks to him, his teacher and two aides are all “in the know” about Spiderman.
The students with ASD are my fellow spectrum travelers. Although they have some challenges I don’t have and vice versa, I see commonality too. I’m more like them than not.
I really dig lists! A well-written list is straightforward. Something to refer to as many times as needed. In my case, a daily to-do list is like the attire for my routine. Even if a list isn’t written out, I have one on the brain.
My “todoist” computer app is one of the first things I lay my eyes on when I wake up my computer. On my job as a substitute teacher’s aide, if given a printed out schedule for that day’s assignment, I guard it as if it was a prized possession until I get to the end of the school day. I use the “shopping reminder” app that will appear on my phone when I arrive at the grocery store address.
Since I find lists to helpful, I thought it would be therapeutic to have a list of things about myself that are sure signs I do live with Billy around the clock 365 days a year. (Billy is my own nickname for my autism spectrum disorder (ASD)).
SIGNS OF BILLY (ASD)
My passion for making a list and marking off items as I do them.
A choice between staying home on a Friday night or going out with friends? Home!
Give me something to organize and I’m a happy camper
No fashion sense. Like ’em sweatshirts and sweatpants
I have more imaginary friends than real ones
My stomach jumps when my cellphone rings
Walk more often with my head down rather than looking ahead
Don’t answer the door!
Verbal processing wears me out
Do my socks match?
Here’s a bruise, and another one. How I got them I haven’t a clue
Group sports? Not me. I’m strictly a solo act
I love having friends my mom’s age
Taking a detour so I don’t have to pass the stranger on the sidewalk
I’ll just hang out in the bedroom and work on a jigsaw puzzle until the party is over
Funerals give me more fright than comfort
A keen observer
Eat the same lunch at the same exact time every day
Obsessed with desk organizers, picking up leaves and twigs, and Snyder’s mini-pretzels
Organizing my Mom’s pantry
If some fella ever flirted with me, I missed it
Give me a visual illustration instead of the gab
Imaginary conversation is my lifelong hobby
If I like the song, I’ll play it again and again…(fortunately for those who live with me, I’ve got three pairs of earphones)
I don’t share very well.