My first inkling I was on the Autism Spectrum was when I was substituting for a teacher’s aide in an elementary school Autism unit. I observed one of the students do something I had never seen anyone do before except myself.
I immediately did my homework. I went over the Autism criteria. I took the online tests. The more I learned about Autism, the more it all made sense. It fit me to a tee! It was like learning the street address I had been living on all my life.
THESE PUT ME ON EDGE
The doctor will see you now. (I wish I had a clone to go for me)
Tell me about yourself. (Where do I start?)
I’ll call you later. (That’s a threat!)
We need to talk. (This can’t be good)
I don’t mean to be rude, but… (It’s rude)
It could be worse. (Yea, I could have pneumonia but that doesn’t help my flu any)
Let’s all go out for lunch. (What excuse will I use this time?)
Please sit down and join us. (I feel an urgent nature call coming on)
I appreciate that you are upset. (Really? Let me UP my upset)
You need to pitch in more. (Well, sorry, I’ll just pitch on out of here)
Ma’am, do you have a moment? (Nope. A second neither)
Group project. Choose a partner. (I wait and hope for a miracle of someone picking me)
One of my top must-haves on a daily basis is Halo ice cream. It is low in fat, it is creamy, and the taste is sufficient for my taste buds. Since my Halo obsession began, I don’t go a day without it. I always indulge in my Halo before I go to bed. I maintain a supply of at least five pints on hand; less than that, I am in a panic state until I replenish my Halo.
I was thrilled when there was a week-long sale of it on sale. It was the best sale I had seen since Halo hit number one on my favorite list. I was at the store by high noon on the same day the sale began.
At the store entrance, I was approached by a lady who worked at a booth selling mobile phone services. I didn’t hear what she said to me and she pointed to my shirt. I was wearing my “Autism Awareness – Accept, Understand, Love” shirt. This started a conversation where I did most of the talking because I come alive when talking to someone about a subject dear to my heart.
She became familiar with Autism from once having worked in a school’s Autism unit. I had done that too so we both had something special in common. I would have liked to have talked her ear off, but I understood she was there to gain customers for her company. One thing I told her before I left was, “One doesn’t outgrow Autism”. She nodded yes and smiled. She understood that.
I took a direct line to the store’s freezer and got four pints of Halo. I had to get at least three in order for each item to be $1.99. At another store, the price for just one Halo was a whopping $6.19. This was more a steal than a sale!
After going through the self-service check-out, which is my preferred method, I desperately wanted to meet up with the sales lady to show her what I bought. She was speaking with a potential customer and I knew I couldn’t interrupt a potential sale. I took my time and it turned out the fella wasn’t interested. So I showed her what was in my bag. The proof that I haven’t outgrown my Autism. She said smiling, “Do you have this every day?” I said, “There’s not a day I don’t.” As I walked away, I did add, “At least, the Halo was on sale!”
No, one doesn’t outgrow it.
I have moments when I am just plum mad at Billy (my nickname for my Asperger’s Syndrome, Autism, High-Functioning Autism, Autism Spectrum Disorder, or ASD for short). This story is one of those times when I was so downhearted that I wished I could tell Billy to take a hike and like an obedient child, he did!
Okay, Billy does have its bright side and I do relish that. It is compensation for his dark side. One of my road hazards living on the Spectrum is I don’t think quick on my feet. A quick answer or a quick understanding of a situation doesn’t come to me. It’s like getting from point A to point B, Billy zigzags instead of going in a direct line. While my neurotypical family/friends have gotten to point B, I’m still zigzagging behind them. I eventually reach point A, but the slow, roundabout way of getting there can cost me pounds of anxiety, embarrassment, and in some cases, money.
This story reminds me of an old saying about one who is a genius who can’t change a light bulb. The difference is I’m not a genius, I can change a light bulb, but I was the slowest one to realize that a key needs to be unique to whatever it unlocks.
My story begins with my Mom’s 2012 Buick Lacrosse remote key’s boo-boo. The boo-boo was a small hole almost covering the open-door button on the remote. The button still worked since the hole had not collapsed yet. My brother said he often saw these boo-boos before he retired from his career in the General Motors (GM) auto parts department. Most of those it happened to were female drivers. Women more than men tend to have long thumb nails and when they press down on the button, the nail is pointing down on it. After so much time, the boo-boo appears.
Before I go further into the story, some background. I am the go-to person in the family for anything having to do with the computer, internet, or other electronic technology. If the computer calls in sick, I see it as a challenge to repair it. If someone else’s computer has a bad day, I’m the one they call.
Since I do all of the online ordering in the family, I ordered my Mom a replacement remote key. I had no problem conducting a Google search and finding a company that sells such things. I felt pretty good when I found a cheaper-priced remote key that looked exactly like the one my Mom had. It was half the price of the first one I saw on the company’s website. With an application I had long ago loaded on my computer that searches coupons, I saved my Mom an additional whopping $4.99! “Well done,” I thought.
It arrived a few days later. I eagerly opened it and tried to remotely open my Mom’s car door. Nothing happened! Not a single beep.
My Mom said something that should have been the “clue” to the dilemma but I paid no attention to it. She asked, “I wondered how they could make a key without fitting it to my own car.” My brother chimed in, “I thought you had to take it to the dealership.” My brother was already at point B (the reason why the key didn’t fit), and my Mom was getting close. I shrugged off their comments and thought maybe it didn’t work because it didn’t come with a battery. This is where I was zig-zagging with other causes. I had to try multiple knives to open up the remote’s battery compartment. I shed blood on this endeavor when one of the knives took a swipe at the tip of my pinkie. After much struggle and anxiety, I discovered there was a battery inside. It wasn’t the source of the problem.
My Mom noticed the phone number of the company on the packing slip. She suggested I call it and explain the problem. Me? Call and talk to a stranger risking myself being asked questions jolly on the spot? Well, she might as well have asked me to cook a five-course meal with family and guests attending. She’d never do that since she wouldn’t want to risk a kitchen fire.
I just wanted the problem immediately solved without my having to contact anybody by phone or in person, have to go to an always busy USPS office to mail the item back, or do anything else that would raise Billy’s anxiety.
My next zigzag guess was I ordered the wrong part. I ascertained I should have ordered precisely a “2012 Buck Lacross remote key”. The item that I first saw that cost twice as much. I went back to the website and ordered just that. My Mom said I should have waited and talked to my brother, the retired GM fella, who was coming to visit in a few days. She was right but Billy wasn’t listening to her. Billy wanted the problem solved NOW! I wanted the anxiety rushing in my veins to stop!
My “oh, I get it now” moment occurred some 60 seconds after I got into bed. This lightbulb went off in my bed four hours after the key’s arrival. I went into deep analysis of how my previous reasoning did not hold up. If the key fob would actually work, then anyone with a 2012 Buick Lacrosse remote key could open my Mom’s car door. Finally! I arrived at point B!
I am a praying person and I do believe the Lord works in my life. I felt an overwhelming conviction to get out of bed, get on the computer, get to the website, and read the entire page of what I ordered. Sure enough, it was in black and white! Another lesson learned – read all the fine print! There was nothing wrong with the remote I originally ordered. It just needed to be taken to a locksmith for it to be adjusted to fit my Mom’s car. The one that I had ordered would have to be taken to a locksmith too. DAH!!! Did I feel dumb or what!
I pulled up the e-mail confirming my order. I responded to it and asked for the order to be canceled. I wasn’t optimistic about that happening but it was far easier for me to write and send an e-mail than it was to take the desperate act to contact them by phone.
Then, I went back to bed. It was a wasted effort for me to fall to sleep. I replayed this whole story in my mind dozens and dozens of times. I felt so dumb! I knew Billy was not innocent in this episode. He rarely is not involved in my day-to-day decisions and actions. This wasn’t the first or last time when neurotypicals around me “get it”; whereas, after time and thought, I usually come to the same conclusion they already had. If it is my area of expertise, I may get to point B before anybody else. However, like this story, I have a delayed arrival, behind those around me who see it so clearly.
I tossed and turned over the situation getting resolved. I did NOT want to be the one to call a locksmith or go to visit a locksmith. I tossed about what if I didn’t get a refund and be out the money. Due to my wanting to solve the problem immediately, I had thrown my money away. All these thoughts of “why didn’t I get it sooner” or “what if this or that happens” tormented me all night long. I do mean ALL night long!
The next morning I heard my Mom up. I was so moved to have a heart-to-heart about the whole thing. Whenever I bring up Billy to her, it seems to go in one ear and out the other. I don’t fault her for that. Her generation, for the most part, had never heard of Autism. I had not heard of it either in my growing-up years. I was 58 before I learned what Autism was and I was living with it. Those of us who have Autism can’t explain it and those who don’t can’t understand it. That doesn’t keep me, though, from trying to explain Billy to family members. She did seem to more fully listen and reassured me she or she’d have someone else deal with a locksmith.
Another bit of relief came when I got word from the company that they had canceled my order and issued a refund. I’m thankful to the Lord that once I had my “oh, I get it now” moment, I did reach out to the company via e-mail to cancel. I’m grateful the company responded quickly within 24 hours without giving me any grief.
Well, there are long-lasting effects. I am reminded of this story when I am browsing online now that I am seeing ads popping up from the Remote Car and Key Company. I figure I’ll never be able to pick up my Mom’s key without remembering this “oh, I get it now” story.
I share this story in case someone reading this has had a similar “oh, I get it now” moment and can feel less alone.
There are situations where my Autism Spectrum Disorder (ASD) is on full display. The mask comes off.
All it takes for me is for the lights to go out!
It was around 8 in the evening when I, my Mom and brother, and neighbors were plunged into utter darkness. No kidding! With the Sun having gone to bed, I couldn’t see my way out of my room without groping my way through the furniture. The weather was not the culprit. The wind wasn’t kicking up its heels and thunder & lightning weren’t putting on a show. So when it went dark and my electronic gadgets started blinking, it came as a surprise to me out of nowhere. I don’t like surprises!
Power outages will bring out the autism in me in SPADES! While my Mom and brother quietly sat it out, I went on a rampage! I had to control my urge to not losing my temper with them because they weren’t acting like it was any big deal. Any attempt to calm me down was met with swift resistance!
At least, one of my electronic gadgets was not totally dependent on electricity. My smartphone was still alive until its battery died. I had to depend on its flashlight application for help in maneuvering in the dark house. I had a spare smartphone for a second flashlight. A text message from the power company appeared on my phone and gave an estimated time the power would come back on to be around 10:00 p.m.
One reason I don’t handle an outage is that it disrupts my routine. It was near my dinner time. I eat by myself and my meal times are totally separate from my other family members. I had to hold off my scheduled dinner time since my planned meal required a microwave.
Another is one of my obsessions is my electronic gadgets. Many of those gadgets take up a huge chunk of my bedroom such as my two computers, three TVs, TV smart monitor, etc. When they can’t work, I am not a happy camper.
Unlike the others, I went outside. I saw a utility crew truck down the street. What did I do? I walked down the sidewalk to where the utility crew was working. There was no reason whatsoever to do that. I knew that as I was walking down there. I just desperately needed to get a closer look. Mind ya, it was after dark. I was the only one in the neighborhood who did that by the way.
Then, after I got my close look, I walked back to the house. The dryer had a load of laundry to sort and put up. Needing something to do in the condition I was in, I was glad to do it. I had never sorted laundry by the light of my smartphone’s flashlight before.
After the laundry chore, I took the notion to get in my car and go for a drive. My Mom tried to get me to stay put but I just assured her I wouldn’t get out of my car. I just could NOT sit in a dark house unless I had no choice in the matter. I felt better on the drive because I was away from the situation that was giving me so much distress. I took flight, in other words.
It was a sight for sore eyes when I returned to find the utility truck was gone and the light on in the window. Now I could prepare and eat my dinner!
The following night, the lights went out again from 10 p.m. until 3:37 a.m. It was a long night for me and my autism. At least, I didn’t go out at that time of night for a walk. HA!
I have a few people in my life who I e-mail every Sunday. They all live a distance away and I seldom see them in person. I call the e-mail “my weekly”. It is in my routine to draft it throughout the week and send the final draft on Sunday. If they were not to get “my weekly”, I would like to think they would check up on me since it would take something drastic like an internet outage or me on my backside not to publish my weekly report.
I often write to them about my Autism. I remind them that when I write about one of my traits or symptoms, I don’t mean that neurotypicals don’t ever do that or have that. The difference is the intensity and frequency.
One of the questions on an Autism test is: Are you reluctant to ask for help? You betcha!
I am not reluctant some of the time or reluctant on more difficult tasks. I am reluctant on any task or project at any time. I want to do it on my own!!! I only give in when I am “at my absolute wit’s end!”
Recently I had one of those “at my wit’s end” moments.
I had a sick recliner for a few weeks. This is extra bad for me since the recliner for all intents and purposes is my bed. Sleep issues are another common autism trait. At the push of a button, it will recline backward and forward. That works great when the button is “blue”. It went “dark” which means “no can do”. At least, the button went black when the recliner was in the “recline” position.
I lifted it up from the back numerous times to see where the loose wire was. This had happened before and the cause was always an unplugged wire. But this time I couldn’t find any such animal. It was hard to see since I had one hand occupied with holding the chair up. I gave up and decided to try to conquer the problem another day.
Well, that another day came after it was one of those thoughts that kept me up half the night. I wasn’t planning on it but the notion to try again came to me right after I got up. This time I detected a loose wire but I couldn’t figure out where its home was. Again, holding up the heavy recliner while conducting a search was an obstacle. I heard my 86-year-old Mom come home from the store. This was “at my wit’s end” moment. I said HER familiar words to me: I need your help. My Mom didn’t give my typical response when she says it which is “Oh, no.” HA!!!!!!!!!!!
My Mom saved the day without lifting a muscle! She just said the magic words: Why don’t you turn the recliner on its side? Sure I thought “why didn’t I think of that”. My autistic brain does have “light bulb” moments but they tend to come on a delayed basis. It is not uncommon for me to first tackle a problem using the hardest method. By trying my Mom’s excellent suggestion, I had two free hands to work with. In less than a minute, I had reunited the two ends and plugged ’em in. The button got its “blue” light back.
Just another moment of living on the Spectrum with a sense of humor intact.
In my retirement years, my vacation is sitting with family members at their homes. My primary responsibility is caring for their beloved critters. Dogs mostly but I do occasionally take care of a cat and a rabbit. One of those I housesit for has a beautiful house that is not lacking in space inside or out. It comes with a number of luxuries, one of which is a swimming pool.
On my last gig, my third one at this house, I took advantage of the pool for the first time. The only reason I even tried to go swimming was that I had the means (a pool) and total privacy. My hurdle to get over was something many of my fellow autistics can relate to which is sensitivity. I am sensitive to light, noise, and changes in water temperature. For instance, I am reluctant to step into the shower but after I do and adjust to the water temperature, I am equally reluctant to come out of the shower. The last time I did a gig at this house, I did try to dip in their pool but I got up to as far as my knees. Even though I knew if I would just stick it out for a minute or so, my body would adjust to the water temperature. But there’s one thing about my Autism and my logic: they seldom agree.
The reason this time was different was because of the heat wave that not only gripped the immediate area but a goodly portion of the entire country. It was so hot outside that the water was within my range of toleration. I slowly went down step by step into the pool. At last, I made it to where the water was up to my neck. I had finally accomplished something that I hadn’t done in at least thirty years.
What happened next? It started misting RAIN! I kid you not. There had not been so much as a raindrop for days on end until immediately after I succeeded in getting up to my neck in the pool. I thought, “You got to be kidding me!”
Well, fortunately, it stopped misting rain before I gave up and got out of the pool.
Then, I started swimming. Hm? My first thought was I didn’t remember swimming to be so labor-intensive. Swimming was definitely more fun as a kid. But once I try something and I’m okay with it or even like it, I will more likely than not do it again. My swimming considerably improved on my second day. It was as if my swimming muscles were saying, “It’s all come back to me now.”
My Autism Spectrum Disorder (ASD) doesn’t do naptime or bedtime. I would like to have naptime but my ASD plays interference. I have to settle for getting sleep when I can get it. That is usually somewhere between midnight and eleven a.m.
Since I moved back home after retiring, I’m my elderly Mom’s sidekick and I jokingly tell her I work for her now. She is supposed to laugh when I say that. In addition to being her dishwasher, bank accountant, launderer, and trash detail, I am her yard keeper. I took it over from my brother and he didn’t seem to mind a bit. I volunteered for the yard because I look at mowing, edging, and trimming as a “get to” rather than a “got to”. I have my ASD to thank for that.
Obsessions are common among the ASD family. One of mine is with gadgets. If it can run on electricity, battery, or gas, it will get my attention. Power cords, strips, and batteries are necessities in my bedroom to run three computers, three TVs, a microwave, two mini-fridges, well, too many things to mention. My room resembles a well-used attic than a bedroom.
Well, my “gadgetitis” is the reason I am all in with yard care. In no time after I became the house yard keeper, I added to my ever-growing gadget collection a battery-operated hedge clipper and edger and an electric leaf blower. No one was more pleased than my younger brother who hasn’t raked a leaf, trimmed a bush, or mowed the yard since I arrived on the scene.
I’ve come across many Autism information websites that tell me something I live every day: perfectionism is very common among people with autism. I kid you not, it is an exhausting trait to live with. On the positive side, it has earned me heaps of praise from family, colleagues, and friends for a job thoroughly and well done.
My drive for perfection lengthens my time with my yard tools. I’m not finished with the clippers until the bushes are trimmed to a tee. Before I turn the mower off, I am on the lookout for any strip of grass left standing. If I can see it, no matter how small, no matter how far, I will go over to it and mow it down.
An unmowed strip of grass on a lawn I just mowed is out of sync! Overgrown bushes drive me nuts too. It’s like A-B-D-C to me. Out of pattern. It will bug me until I remove the eyesore.
I react the same to tiny weeds or grass sticking out of the sidewalk cracks or curb. It just bugs me! I will use shears or even my own hands to get rid of grass growing where it isn’t wanted. After I’m done, the curb is back to A-B-C-D!
I will not put the lawnmower in its resting place until the yard looks like a smooth-like work of art. I usually follow up the next day with the edger to go after the weeds that hug the fence. If I see any weeds or blades of grass sticking up like a sore thumb, they are done for. I won’t say to myself, “I’ll catch ’em next time.”
My drive for perfection goes with me when I take on the alley behind the yard fence. I use my weed eater instead of the lawnmower since it is a small area. My neighbors would probably all agree unanimously that I give my portion of the alleyway the trimmest haircut in the neighborhood. The weeds don’t stand a chance against my ASD! I admit I overdo it but that doesn’t stop me from doing so. I can’t help that inner drive within me to cut to perfection.
My favorite comedian, Michael McCreary, “You Don’t Look Autistic”, posted:
Gas Pump: See the cashier inside for your receipt.
Me: Absolutely not!
I laughed because I see myself doing the same. I wish I didn’t have an anxiety pang that just automatically drops in on me when I drop in at a customer service desk, pharmacy counter, deli-meat-bakery-counter, etc.
What is there to fear? An unforeseen question that stumps me. One I could answer if known beforehand or given time to think before answering. More so, a long wait. I’ve had meltdowns from such.
Recently, the scene of an anxiety attack was the grocery store pharmacy. It wasn’t the first time either at this place. I dread picking up prescriptions because there is always the possibility of a wait. So it is already a given for me to walk into the store with some level of trepidation. But this time, I initially breathed a sigh of relief when just one customer was being waited on at the counter.
It was a customer with a long list of items. The pharmacy clerk’s eyes were peeled to the computer screen. I was never in his line of vision. The customer had plenty of questions such as when she would get this med, the cost, etc. The waiting was worse because I was walking on a sprained ankle and the pain of standing was worse than walking on it.
The customer turned back at me and said, “I’m sorry.” I just nodded without looking her eye-to-eye. I am sure my facial expression would have given my frustration away. I couldn’t blame it on her. I knew that in a logical sense. She had every right to conduct business at this pharmacy as I had. I wish her apology had eased my anxiety but it didn’t do diddly-squat for that.
She was joined by two teenagers who I guessed were her kids. They soon got tired of standing at the counter and took advantage of the small sitting room. I had hoped that the other person on duty who was towards the back of the pharmacy would step up to the plate. Or, the clerk helping the customer would take his eyes off the screen and ask his colleague to help. Neither happened until someone spoke up.
That person wasn’t me. As bad as my ankle hurt, as hopeless as I felt, and the anger too, I could no more do it than fly to the moon. Confrontation or asking for help scares me more than waiting.
My rescuer was someone who was waiting too. She was one of the two waiting for her Mom to get done. She had a better line of vision of the pharmacy staff member towards the back of the store. She got her attention and let her know that a customer had been waiting for some time. I don’t know exactly what she said, but whatever it was, it brought the worker to the counter.
I smiled at both the teenagers and said “Thank you”. Oh, how, I meant that. They both nodded and smiled. The girl said, “No problem.” Sometimes help comes from unexpected people and places. I must keep that in mind so that I will be one of those unexpected people.
With all the sadness Asperger’s Syndrome (AS) can bring, it also comes bearing gifts. I admit some moments are so bad that I think of AS more as a curse. On the other hand, in my better moments, I see an entirely different picture. One of privilege to make a difference.
While I was a substitute elementary teacher’s aide, I often worked with children with AS in special education settings or in regular classrooms. I have so many fond memories of these children who like anyone else had their passions.
Once I met a boy around ten whose drawings were stunning for one who had yet to say his first word. I also fondly remember a lovely girl who would sing during music class but neither her teacher nor fellow students could never get a word out of her as far as conversation. She possessed a beautiful voice accompanied by an angelic glow on her face. I was told she sang in the church choir. Only the Lord knows how many hearts that child has touched from the choir loft.
My gift, my passion, is writing. Through my talent, I can voice my thoughts in words and let those who read them know me a little better. I took up blogging shortly after I learned that AS wasn’t something the children had, but I had also. After 400-something blogs, I am still at it because of the encouragement I have received. The feedback has shown me that I can use this gift as a means of contributing something good and positive to those near and far from me. An additional bonus is writing does me a world of good. After all, some of my blogs were written after a meltdown. If I can write about it, it hasn’t defeated me.
I’ve had the immense blessing of late to share my gift with a sweet lady who is a shut-in. Her life and that of her spouse are almost entirely confined to the house they’ve shared for over 60 years. Her outings, for the most part, are doctor appointments for herself or him. She actually misses grocery shopping such as picking out her own fruit and vegetables. Now she depends on those who put orders together to deliver to her home. She was an active church-goer attending the same church for many years, but nowadays, she turns on her computer to watch the service on Sunday mornings. Most of her conversations with friends, some of whom she has known for 60 years, are done over the phone. She misses something I don’t believe I’ve ever missed – having company over.
She was one of my e-mail pals who was on my weekly subscription list. She and others, mostly long-distance family members, get an e-mail of “my week that was” every Sunday. When she and her computer were having trouble connecting, an idea popped in my head to call her and read one of my blogs to her. I was reluctant at first. When was a good time to call? What if I called at a bad time? Would I know how and when to wrap up the conversation? But the thought was like a computer file that would not close. It was like any of my obsessive needs on any given day. Until I give in, the obsession will stay in my mind like a doorbell that won’t stop ringing.
I gave in and made my first blog call. I read a blog that was both about my AS and our mutual faith in the Lord. She loved it! I know she’s biased but I believe it was genuine on her part.
Thus, a new routine was started. I call her at the beginning of the week at approximately the same time of day. In addition to chatting, I read her the “blog of the week” in hopes of making her smile and starting her week on a bright note. I don’t normally like talking on the phone, but this is different. This is a mission to help someone and that is no small thing. It helps to make my life on the Spectrum worthwhile. I at least can know that I’m not just taking up space on this planet where I so often feel like I’m an alien being.
My Life on the Spectrum 
