My Story

A video I was asked to do for Great Autism Recovery has been published and the link is below. It is my own story of how I was formally introduced to my constant companion.
Great Autism Recovery website: Marsha England 
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The Uniqueness of Autism

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.

Worry Offers Wrinkles, Lines, and no Solutions

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.

 

My Bigger Perspective

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.

Just a Little Talk

I have a relative who has to wear a heart monitor. She has to wear it until her heart’s beat gets back up to speed. Her sister suggested a nickname for the monitor that did its job but was a nuisance to put on, wear, and take off. She adopted the nickname and called her monitor “PITA”. It stands for pain in the … you know where. She is looking forward to the day when the doctor will relieve her of her “PITA”.
I understand giving a temporary or constant companion a nickname. I gave my car, a Toyota Prius, the nickname of “Pree”. I recall after buying a brand new Prius, a guy made fun of my giving my new set of wheels a nickname. I suspect he was just jealous of my Pree. Most of the time Pree is in my good graces. I particularly am grateful to her for correcting my mistakes when I am off in my own world. Such as she will beep when I try to lock her car door while she is still running.
Months after being formally introduced to my constant companion of my autism spectrum disorder (ASD), I gave it the name of Billy. It may sound strange but by giving it a name helped me feel as if I had just a tad more control of it. Whenever my ASD slaps me in the face with its sometimes overwhelming presence, I just say to myself, “It’s just Billy.”
One of those slaps was when I was in a small group gathering. What is small to me? Three or more people. I went off to my corner and did my own thing. Then, a few unexpected guests arrived, one of whom was a sight for sore eyes. I seldom get to see this young man who is a gentle soul. He’s one of the few men I know I gladly accept a hug from.
They all went to the table to another room to chat but he came back out and asked me how my job was going. That’s all it took to get me to talk. I entertained him with a couple of my school job’s “out of the mouth of babes” tales. I did what I seldom do and told him about my gadgets (home assistant speakers): Echo Dot, Echo Show, and Google Home. If he thought it was obsessive for having three, he didn’t show it. If he was bored with my monolog, he didn’t act like it with his questions. I just might have sold him on the idea of having one himself, but just one. I’m the one with the gadget obsession.
He was called back to join the gang. I had just a short one-on-one with him but those few minutes were precious. I had no desire whatsoever to join the group, but it was a pleasure for me to have just a little talk with one of the sweetest young men I know.

In The Garden

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.

 

 

 

Back at my Alma Mater

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.

 

Diversity in Autismland

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.

My Autism List

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!

Gadget collector

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.

 

Riding on Faith

Do you remember the first time you hopped on a bicycle? I can’t say that I do and I figure it’s probably one I would have wanted to forget.  I assume it didn’t go smoothly because of my track record of bike falls. I was more successful at falling than pedaling before I had a handle on riding a bike.

Now that I have since learned I have been living on the Autism Spectrum, I have an explanation for my awkward relationship with bicycles. A common autism trait is having a hardship for doing more than one thing at once.  Bike riding requires steering and pedaling at the same time with a keen sense of observation and speed. I still have a scar on my knee from five decades ago where I might not have been keen on watching where I was going or how fast.   Motor skills also come in handy when riding a bike and I wasn’t endowed with much motor.

I haven’t looked for such but I assume there are “how to ride bikes” books out there.  Unlike when I was growing up, one can watch “You Tube” videos on how to ride a bike. Or spend time observing others take a spin on their bikes. Yet until one hops on a bike and puts feet to pedal, one doesn’t know what it is to ride a bike.  Now I can’t imagine someone putting a lot of energy into studying about bike riding without actually riding one. It sounds rather foolish, doesn’t it?

One could say that same thing about faith.  It’s one thing to know what faith is; it’s another to live it as one goes about the business of living.

Hebrews 11:1 tells us that faith is the substance of things hoped for; the evidence of things not seen.  Such as believing one’s prayer is going beyond the ceiling or that it isn’t luck or a coincidence that you made it through a storm, but an answered prayer.  It is one thing to talk about this common word in the Bible, or to sing hymns about it, or to read and memorize the 336 verses that contain the word in the King James Version. It is well and good to pray about something on one’s plate, but it takes faith to leave it in the Lord’s hands.  If one only has book-smart knowledge of faith without the practical use of it, it is like the person who is book smart on bikes but has never pedaled a day in one’s life.

I gave up bike riding a long time ago. I recall I once got back on a bike a decade or so ago when I had the rare opportunity of having access to one in a remote area. Like they say about riding a horse, it all came back to me. Although I was rusty from lack of practice, I didn’t take a fall. However, my hips paid me back BIG time after my bike reunion. I would ride a bike now but I can’t think of a place where I could ride one where there was a sure-fire guarantee that there would be absolutely NO witnesses. I’m afraid of both failing and falling in public.

I assume that even those who ride bikes well into their later years still run the risk of having a fall anytime they hop on their bikes. Not as often as most people, but they still run the possibility of flying off the handle. One can only hope they don’t break some vital bone in their body, like a neck.

Likewise, no one is perfect at riding on faith. We all fall sometimes to our fears and doubts. Just as it is with bike riders, the important thing is to get back up and try it again. Just as it is with most things, the more you practice living your faith in the Lord, the better you get at it. It’s okay to be rusty at riding a bike, but not okay to be rusty at riding one’s faith.