Looking Out The Window

If I could take a single snapshot of myself as a child, it would be of me as a little girl looking out the window watching the children play.  A child wishing to join in, but too afraid to step outside and ask “can I play?” Maybe if she had asked, they would have let her join in the circle.  But repeatedly being a victim of bullying, she didn’t dare risk rejection. She maintained her distance on the sidelines where she felt safe.

She compensated the loneliness with retreating into a world of make-believe where she could be anybody she wanted to be.  She made up a cast of characters who let her join their circle. In this world, she got to take part and play the starring role. The little girl knew it was a world of her own imagination.  And when she invariably got caught acting strange, pacing back and forth, talking to herself, she’d bear the brunt of the heckling.  No matter the fingerpointing, she’d retreat to that imaginary world where she was somebody.

I am on the autism spectrum and was only self-diagnosed almost three years ago at the age of 58. My diagnosis was a gift I shall treasure for the rest of my days.  I know now what’s behind how I think, feel, and act. Before the diagnosis, it was like walking in pitch black darkness. The diagnosis was the light bulb.   

It was largely through working as a substitute teaching assistant that I came to the realization of being autistic.  Sometimes I would cross paths with a child who reminded me of the little girl looking out the window.

One of those times occurred in an elementary school gym while subbing for a P.E. aide.  I was watching the children play in stations, each section being a different game. I noticed a third-grade boy who was  standing next to me. I asked him why wasn’t he at one of the stations and he shrugged his shoulders. I asked him, “How about basketball or tether ball, or jump rope, or hula-hoop?”  He nodded “no” at all my suggestions. I asked him what he liked to do. He said, “EAT!” I could not keep a straight face.

This youngster was tugging at my heart strings.  I knew what it was to just watch the other kids play.  Instead of pushing him to shoot baskets or jump rope, I asked him if he’d like to take a walk with me.  He agreed to that.
As we went for our walk around the other kids playing, I asked him questions such as what he was wishing for Christmas. He said, “Food!” This boy had more “food” on his brain than inside his tummy. I asked him what his favorite food was and he said “hamburger” and what hamburger place he liked best and he said “Mom’s”. I assumed he meant Mom’s homemade hamburgers were better than at any restaurant.

He pulled out his Mom’s business card with a beaming smile on his face. He was so PROUD of his Mom and it seemed to be of such comfort to him to have the card with her phone number in case he needed to call her. He let me see the card and it was a hamburger restaurant. That explained why his Mom’s hamburgers were the best and his favorite food.   

He told me he had one sibling, an 18 year old sister, who works with Mom at the restaurant. Since there’s a big difference in ages, perhaps he’s not used to playing with kids his own age. He feels more comfortable with adults than other kids and I was that way when I was his age. Now I prefer hanging out with children more than I do adults.

I believe the Lord has blessed me with both my diagnosis and a job that helps me cope with that diagnosis.  It was no burden at all to let that child know that he wasn’t invisible to me. I gave him a little bit of time and attention that I wished someone had given me when I was that little girl looking out the window. The past can’t be changed or relived. But my job gives me numerous opportunities to help young ones who struggle with what I struggled with and still do.

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Good Answer

How autistic are you?

Well there’s bronze level autism where you get a tour of my room that displays my obsessions with electronic gadgets and my food snacks; the silver will get you a demonstration on “stimming — let me count the ways”, featuring spinners, cubes, rubber bands, coins, pens, etc.; the gold will get you a one-hour worth briefing on living on the Spectrum accompanied with a white noise gadget, sleeping mask, weighted blanket, etc.

You don’t act autistic?

So? I know people with brains who don’t act like they have any.

How come you say you are autistic when you look completely normal?

I work hard at pretending to be “normal” until I can get to that people-free zone and take the mask off.

Do you miss having a social life?

I never had one to miss.

Why do you pace and talk to yourself?

I need the exercise and I am easy to talk to.

How come you bite your nails when anxious?

It beats biting my hand or someone else’s off.

A Square Peg

Unless one has Autism, one can’t understand it. Those of us who do can’t fully explain it. I can only give one a glimpse of what it is for me.

I am more comfortable in an environment where there are rules laid out and aren’t assumed that everyone knows them. I am aggravated by those who act as if rules are mere suggestions. I welcome and need rules. In an unstructured environment, I feel as uneasy as my dog would feel in a bird cage.

If a rule doesn’t make sense to me, well, that’s another story. I’m not usually defiant, but I have had my moments.

Routine is essential! It has to do with feeling safe and secure in the world. If someone else changes it, I am traumatized. If I change my routine as I occasionally do, no problem.

Sometimes the source of my meltdowns is background music. I don’t dare complain to the one playing the music, much less scream or cry because it would draw unwanted attention. The best option is to go some place beyond earshot. If not, I will be boiling inside like a tea kettle.

Conversation can be a struggle. That’s one reason I am most comfortable when I am by my self. It takes me seconds longer to respond to someone’s question. That’s why I often ask for someone to repeat what they said to give me a few more seconds even though I may have heard them the first time.

I enjoy one-on-one conversations with one I share a mutual interest. I wish such would happen more often than it does. I guess having limited interests has something to do with that. Such as politics being one of my interests but I am surrounded by those who are on the opposite side.

I dread being amidst a social chit-chat with no escape route. If there is no graceful exit, I drift into daydream land.

I prefer having a schedule as I go about my business of living each day. I thrive with a schedule with the consistent rhythm of one thing after another instead of things happening all at once or nothing happening at all.

I despise being pointed out in a group as the quiet one. I do not have to be told I am a quiet person. I’m over a half-century old and so it isn’t headlining news to me.

I have this thing about time literally speaking. If someone tells me they’ll arrive at noon, I expect to see them at noon or early; not at 12:55. I’d rather they say “noon-ish” if that’s what they really mean.

Highly sensitive! Just even a slight bit of criticism or correction will take me so long to get over if I ever do.

I lack empathy. I shy away from emotional scenarios. It is easier for me to show my affection with actions instead of words. Helping someone with doing tasks helps them and gives me something rewarding to do.

A word that is on my hate list is “group”. It doesn’t matter whether it is a group meeting or group outing. It doesn’t matter whether it is held at the workplace or home base. When more than two are gathered, my mute button comes on.

I am the square peg in a group of round pegs.

Company Anxiety

I call my autism “Billy”. I gave it a nickname like I gave my car since wherever I go, they go with me. I can park my car outside, but I can’t do the same to Billy.

One of a number of things that Billy gets all up in arms about is when the unexpected happens. Such as company arriving at the door. If it’s expected company, Billy has at least some time to adjust and plan accordingly. It is another story when it is unexpected company. Billy will respond with a heavy dose of anxiety. The level will not lessen until the company has finished their visit.

Once upon a time, a close relative gave me a few hours notice of joining me while I was out of town on vacation.  This was better than the relative showing up at the door unannounced, but even though I had some notice, it gave me a jolt! I had a little time to alter my plans of being all by myself. I tried to focus as much as I could on the positive of hanging out with someone I am particularly fond of. I feared the relative might bring a friend and that was a worrisome prospect for Billy. When company comes calling and it is more than one person, Billy wants me to hide until the coast is clear. If it is someone I don’t feel comfortable with, I speak as little as I can get by with.

Now when I went to bed before he was scheduled to arrive, I didn’t know if he would show or not.  There had been really bad weather in his neck of the woods. Just to show how my Billy works in my sleep, too, I had a nightmare.  So “real” that I still remember it months later. 

In my nightmare, not only did my company show up, but so did a friend and two dogs.  Then, friends of theirs showed up.  One after another!  I remember in my dream looking for a closet or something to escape from the people because I was a basket case of nerves and tears.  Their host of friends brought food along with their big appetites.  I took it all in from a corner in the room wishing they’d all go back to where they came from and return me and the dogs I was caring to back to solitude. 

The nightmare did not come true. The bad weather kept my company away. Even though I was in the clear as far as having the house to myself, I felt a little sad that my company didn’t make it. Why? The person is okay with me talking on and on about Billy and well, a listening ear is a blessing. I need to remember this myself when someone is talking on and on about their “Billy.

Recharging Tasks

I have different assignments to select from on my part-time job as a substitute teacher’s aide.  Most of the time one would find me in a P.E. gym or a Special Education class. On the other hand, I seldom volunteer for kindergarten duty. Even my friends who are kindergarten teachers or aides are understanding of that. But on occasion I work up the nerve to take on kinders but for half day assignments only.

Since I started subbing five years ago, I’m in the habit of keeping a journal and rating all my assignments so that I have a record of assignments that recharged me or depleted me. One week I had three assignments and I was pleasantly surprised when it was the half-day kinder assignment I gave four stars. The reason had everything to do with my “Billy” (my nickname for my Autism).

Billy isn’t entirely a thorn in my side.  Sometimes he is my strongest ally.  I credit Billy with my attention to detail and my delight in organizing things.  Just give me something to put in order alphabetically, numerically, or some other system and I am content as a kitten with a bowl of warm milk. 

On this particular kinder assignment, I was tasked with checking with the three kinder teachers to carry out whatever tasks they needed me to do.  In most cases, it wasn’t to watch the kids unless the teacher needed to answer a nature call.  I was mostly given paperwork tasks such as stuffing kids’ folders or cutting out pictures.  This is the kind of work that gives my Billy a smile as big as the state of Texas.

Not that I was instructed, I finished the folders with putting them in numerical order. I did this with full knowledge they wouldn’t stay that way.  But as long as the folders were under my control, they would be in ORDER! 

One of the teachers warned me, as if she was apologizing, that she was giving me a boring paperwork task to do. BORING? I didn’t tell her this but I was on cloud nine tending to boring stuff. The time went by so fast because Billy and I were in our recharging mode.

If I had been given the lone task of social interacting with the kids, joining them in their rotation centers, keeping them on task, etc. I would have given the assignment a lone star. Exhaustion would have set in long before the fourth and last hour.

 

It’s Not Just Me

I wish I had seen this poster back in my younger days five decades ago. They didn’t have video games back then, but there were soap operas. Watching them was what I did in the summertime. My Mom watched one or two of my half-a-dozen soap operas and one of the first things I asked her when I got home from school was, “What happened on…?” By the time VCRs were invented, I had outgrown soap operas and switched to some other obsession. Rotten timing!

I don’t listen to music much anymore but I did as a teenager. They had record players back then and something call 78 rpms, etc. I would play the same song over and over in my bedroom, pacing the floor, pretending I was somewhere else being somebody else. Sometimes the person I was pretending to be was the one whose picture was on front of the record album cover.

I had a wild imagination as a kid. I often used the stories from soap operas as my platform. I know I’m biased, but I think I may have come up with better scenarios than the soap opera writers. I have never lost that wild imagination. I still at the ripe age of 60 retreat into my wild imaginary world in situations that will probably never occur.

All this probably sound strange to those who don’t live with an Autism Spectrum Disorder. Maybe it sounds strange, too, to some who do. All ASD folks are unique, after all. My only response I can come up with is: It is what it is and it isn’t just me.

Autism and Conversation

Below is a list of signs that I live with. They don’t apply to all with Autism Spectrum Disorder (ASD) because we are all unique who travel on the Spectrum.

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 love hardball conversations about any one of my limited interests. I can talk a monologue’s worth.

On the other hand, chit-chat is hard for me to sit through. If I can’t make a graceful exit, I retreat into my imaginary world.

Most of the conversations I have are planned out in my head and they never take place.

The best part of a party or get-together of three or more is when someone says, “We best be going.” That spells R-E-L-I-E-F.

I can be chatting away with one person I feel at home with, but if another person or more join in, it is like a mute button is attached to me and it comes on.

In the course of a conversation, I may be asked questions that I don’t have time to process. If have to give an answer right there on the spot, it probably won’t come out right and won’t be my best answer. I will for days, weeks, or even years later think of what I would have said if I had the chance to do it over again.

I came across something someone wrote: The older I get, the more I understand it’s okay to live a life others don’t understand. I relate to that quote. I’m working on being content with my companion that never sleeps — ASD. I might as well since it is here to stay.

Just What is Normal?

I was getting my eyes examined by an eye doctor I had never seen before. I immediately felt comfortable with her. When I meet someone who I feel comfortable enough to let my guard down, my mute button turns OFF. It really is a compliment to those I am able to do that with.

I don’t remember how the subject came up, but I told her I had Asperger’s. Her eyes got as big as saucers and she said, “You look so normal to me.” I have gotten that response before. It’s on my list of what NOT to say to someone with Asperger’s.

To be fair to the doctor, her specialty is eyes, not brain. And, too, because I had my guard down, I was completely at ease. My behavior is the opposite when I am with someone I am on guard with. If I don’t feel a “welcome mat” when meeting someone, my mute button is ON and stays on whenever I cross paths with that someone.

What I would want people to understand is that if you’ve met one person with an Autism Spectrum Disorder, you’ve met one person. For example, some of us flap our hands or arms, some spin on the floor, some pace the floor, etc. Some do such with no thought of eyewitnesses. Others do their stimming in private.

My symptoms, for the most part, are invisible except to me. If one secretly video taped me at those times I am alone, I think watching the video would even astonish me. I’m one of a kind all right. Those who witnessed me as a child pacing in the backyard would agree with that.

Just what is normal? Beats me. Maybe normal is just a word on the washing machine cycle. But whatever, I’m okay with being unique.

Two Traits at War

According to Interactive Autism Network’s website, although poor motor skills and clumsiness are not currently part of official DSM-IV diagnostic criteria, such deficits figure heavily in clinical accounts and assessments.  Individuals with Asperger’s often display an odd or uneven gait when walking or running, trouble with ball skills, difficulty with balance, poor handwriting skills, and difficulty imitating or mirroring others’ postures, gestures, or movements. 

Poor motor skills and clumsiness are two of my challenges of living on the Spectrum. When I started writing this blog, I was nursing the left side of my face with an ice pack. When one’s face goes head-to-head with a brick wall, it is never the wall that cracks up.

Another common trait is restricted interests (obsessions) which are for me calming and assist in reducing my anxiety. One of my interests is electric scooters/bikes. As you might imagine, this “motor” interest can collide with my not being so fine with fine motor skills.

My newest bike at this writing was a Swagtron EB-5. It arrived on a Sunday and was almost fully assembled except for the seat.  And, wouldn’t you know, it was the seat that would be the thorn in my side, a burr in my saddle, and a pain in my neck.  My problem was the clamp that was not doing its job of adjusting/tightening the bike seat.  Seats are pretty important in order to have a safe, and comfy ride; well, not big on comfy since I haven’t yet ridden on a bike seat that was rear-friendly.  

I did try riding Swagtron inspite of riding it with its seat all the way DOWN.  The e-bike ZOOMED off like a rocket when I pedaled.  My reaction time is much less than the bike’s. “Swag” and I took a tumble.  I was relieved my new bike wasn’t hurt but “Swag” fell on my left foot.  No broken foot but I had a swollen one within an hour or so.  

My grand-nephew claims his Grandpa and my brother can repair anything.  Well, it didn’t take Grandpa long to put “Swag’s” seat in its place.  I was amazed watching my brother’s fix-it work.  He didn’t even need to glance at the instructions.  Repair and assembly work is not under my list of talents; although, I give it a good try when it is one amidst my herd of half-dozen bikes/scooters. I lack in fine motor skills as well as gross motor skills. In other words, my brother can handle screws, nuts, and bolts for better than I can.

When a bike and a brick wall meet head-on, it isn’t the wall that is worse for wear.   The same bike, Swagtron, that I fell off of a week prior hurting my foot was the bike I ran into a wall the following Friday.  At least, my foot had healed by then.

I was riding on the local city bike/walking trail.  All was well until I approached the area where there is a water fountain pit stop.  It’s a shaded area where there are places to sit and a  narrow, round sidewalk with four or so brick wall posts.  I should have stayed on the main trail where the sidewalk is wide, but I ventured off on the narrow sidewalk going in a circle.  Unlike my two other bikes, “Swag” only goes one speed, 15 mph, when I’m pedaling.  It will go slower if I just use the throttle and forget all about the pedals. I lost balance as I was going around the circle.  I could see for a few seconds I was running into the brick wall but I wasn’t quick enough to turn my handlebar or use the handbrake.

I put the blame squarely on Billy (my nickname for Asperger’s/Autism).  One of Billy’s traits is lack of motor skills and balanced.  I’m both socially and physically awkward.   Or, as I often say, I’m not quick on my feet with communicating with my fellow man, driving behind the wheel, and with my bikes’ handlebars.  Thus, bruises and scratches are almost as common to me as moles .

My balance and motor skills have not improved with almost 2 years of riding practice.  I’m not so bruised that I am putting my two-wheelers to rest though.  Just the cost of them alone is persuasive enough to keep pedaling.  The best I can do is to learn from each accident.  Hours after I had medicated and bandaged the scratches on the left side of my face, I took “Swag” for another ride.  This time at another place where I stayed riding on a BROAD sidewalk that didn’t go in a circle.  How did it go? Billy and I had a blast!

Some Hurdles for me to Jump on the Spectrum

Someone is telling me about one of their most memorable experiences. I understand they are proud as a peacock of their loved one’s accomplishment. Their loved one is one of mine too and I’m proud, too, but the someone isn’t a “cut to the chase” type storyteller. I am thinking while pretending to be hanging on every word that “Please, Lord, give me patience.”

I have heard and do buy into the fact that constructive criticism is a helpful thing if taken with the right attitude. However, I’m like some others with Asperger’s that criticism, justified or not, is an upper cut to my heart. It is as much as sting on me emotionally as a bee sting would be to me physically. I may take that criticism in and avoid doing whatever again, but I won’t get over it any time soon, if ever.

It happens to most people. A person gets your attention and asks, “Do you know where….?” It is difficult for me to answer questions on the spot. My brain needs a tad more processing time. I can give a good answer of where some place is if the person asking is willing to wait around for 2-3 minutes. It doesn’t matter if the directions are to a place like I know the back of my head. I’ll give an answer of “I don’t know” or I will take a shot at it. One too many times my “shot at it” was way off the mark and wondered if the person was able to figure out how to get back to where they were when they asked the wrong person for directions.

Did I say the wrong thing? Did I say too much in the phone call? Or, did I say too little? How do I get out of going to the party in honor of a dear friend when I can’t even consider the possibility of going? How long must I stay seated amidst those visiting our house before I can retreat to my room without insulting the guests? Should I bring up one of my favorite topics with this person or not? How do I shut it off when I detect boredom on their part? I need to get by in the store aisle, should I say “excuse me”, pretend I’m looking at something else until they move on, or come back later?

Despite the hurdles, the bright side of Autism outshines the dark.