Socialitis

 

 

The girl with the curly hair and I have a lot in common.  I follow her postings because they provide me comfort.  So many of the challenges she has are mine too.  The posters above are three of them.  It is a mystery to me as to how much I enjoy corresponding with someone but have no desire to socialize with that someone. 

My closet cousin in age and one I grew up with recently dropped in for a good part of the day.  We see each other once or twice a year even though we live less than three hours apart.  We luv each other dearly even though we are poles apart in politics.  My Mom and brother were also there.  Most of the conversation was on topics I had zero interest in.  Nothing against him but I was bored stiff!  
 
When I learned this wasn’t a pop-in but a long-haul visit waiting for his truck to come out of the repair shop, I retreated to my bedroom and got on my computer which is one of my strong interests.  Stronger than expresso coffee.  I would pop in and out when I could think of a topic I could bring into the room.  Such as I popped in with one of my electronic gadgets I had gotten myself for Christmas and did a show-and-tell for my cousin.  My pop-in visit was short since he wasn’t as impressed as the kids in the family.  I wasn’t surprised at his lack of enthusiasm since he’s one of the FEW people I know who does not even have a FACEBOOK or TWITTER account.  I figure I did good enough with my pop-ins.  It wasn’t like I deserted him.  I was thoughtful enough to turn  on the TV for him.
 

A visit from a cousin I love dearly should be something I would be so excited about.  I know it would be hard for him or other family members to understand.  I love my cousin but I don’t love socializing.  It’s just the way it is living on the Spectrum.  Here’s a quote I know all too twell:  Those who don’t have Autism can’t possibly understand it; those who do can’t possibly fully explain it.

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Coping after the Party

I echo that quote. I have oodles of fun by myself. Since I don’t live alone now, I am not lacking in human interaction as I was when I was living by myself. I confess when I have the house to myself, it is like being on a vacation without being on one. Or, if I housesit when I have an entire house to myself, I am in luxury!  It has nothing to do with those around me that I prefer my own company. It’s just the way it is with my ASD.

Parties are hard for me to have a good time at, but not impossible. At a social event, the only coping skill I have is eyeing a party outsider too and striking up a conversation. It has worked but it isn’t full-proof. It won’t work if the one sitting alone does not cooperate. If there is no one sitting in the corner but me, it’s going to be a long night. I can’t recall feeling sad when the first party guest left. That’s usually the best part of the evening.

After the social event, I cope by being with only me, myself, and I! I go for a walk in the park if there’s daylight left. If not, I find something I enjoy doing to keep me busy such as a word puzzle, catching up on my e-mails, or writing a blog.

I have some memories of having honest-to-goodness fun with others. It’s just I don’t have as many of those memories as I have of “me and my shadow”.

Noise on the Spectrum? Depends on Who Turned It On

When I was growing up, some five decades ago, I drove family members crazy with my record player. If you don’t know what a record player or phonograph is, you probably don’t know what 45 rpm’s either.  I imagine my Mom wondered what in the world was she thinking giving me  a record player for Christmas one year. The music actually went along with my autism trait of talking to myself, of retreating into my imaginary world, of pacing back and forth while playing records of what are now “oldies”.

I don’t mind loud music, BUT! Oh, a very important BUT! I don’t mind if it is music I chose and turned on.  If someone else is playing music that I am within earshot of, a storm brews up inside of me with claps of thunder, streaks of lightning, and pounding rain.  I know it is not socially acceptable to tell someone, especially if you are related by blood or marriage,  to stop playing or turn down the Facebook video such as that of a church choir singing.  It’s not the hymn, it’s not the choir or the soloist, it’s something I cannot explain.  I have to walk away from it until the music stops.  Once it stops, I am back in my happy place.

An example of this was an evening when  I was riding in the car with three other people.  The driver, his son in the front seat, and another sitting across from me in the back seat.  Someone put on a CD of their favorite music.  I knew I was headed for meltdown country.  It didn’t help when the person had the driver turn the music up.  I was trapped!  Jumping out of the car was not an option.

I tried every coping mechanism I could think of.  Prayer included.  I played Sudoku on my smart phone but it couldn’t take my mind off the pain shooting through me.  Tears were streaming down my face.  The traffic was bad and only prolonging us getting to our destination.

The person sharing the backseat with me  must have noticed the tears and asked me “Do you need a kleenix?”  That gave me the opportunity to show someone who was skeptical about my autism of  what an autism meltdown looks like.  Autism was an alien word to my friend.  With my eyes filled with tears, I told her it was the music.  She had the driver turn it off.  I then whispered to her that sometimes music bothered me and it is my Autism.  This time I think she just might have believed me.

After the music stopped, it was as if I had been drowning and I was able to come back up for air.  It took me longer to recover because I had been suffering for nearly a half and a hour with the music blaring.  I am glad my friend witnessed it though.  I have tried so hard to hide my worse symptoms from people around me.  That night was so bad that I wasn’t able to do so and it turned out to be a good thing.  Come to think of it, my prayer was answered.  Just not that way I expected.

I came across a quote about autism that I believes is true.  One who doesn’t have autism cannot possibly understand it; those who have it cannot explain it.  I cannot explain why I enjoy my music but go into a tailspin to music I didn’t turn on.

Growing Up on the Spectrum

I met Angel shortly after I started subbing as a teacher’s aide.  He was three then and one of a half-dozen students in a pre-school special education class.  His dark, black eyes with matching dark curly hair were the first thing that captured my eyes.  His first name would do to describe him in one word.  His smile melted my heart.  He couldn’t  utter a word, but he could yell as loud as any other toddler.

I was recently reunited with him who is now a grown boy.  He still can’t talk and only the Lord knows if he ever will.  When I had last seen him at 6 years of age, he was still being weaned off the bottle.  He is now off the bottle and now engaged in a battle over the fork and spoon.  The adults in his life want him to utilize the utensils, but he sees no need for them.  His hands will suffice and is still quite stubborn about that.

I asked his teacher if he was still an angel.  She smiled and said, “Sometimes.”  Well, it would be too much to ask for any of us to be angelic around the clock.  In the classroom, he seemed content in his own world turning around in the aide’s rolling chair.  I noticed he stims with four of his fingers, two on each hand, pointed near his ears.  He isn’t putting the fingers in his ears; it just appears he’s doing so.

He had a tendency to get in my face and that of others.  He reminded me of my eye doctor examining my eyes.  This tendency of his sometimes gets him in trouble with his classmates who have no understanding of why he does such.  On that day I was with him, he got a knock on his noggin when he got too close to another student.

Just because he’s nonverbal with learning challenges doesn’t mean he doesn’t have some tricks up his sleeve.  Hardly!  A sure sign that he wants something or wants to get out of doing something is his turning on the charm.  He comes up to me with a hug looking up at me with those adoring dark eyes of his.  His teacher and aides have since figured out what he’s up to with the charm.  It doesn’t work most of the time but he hasn’t given up on this charming approach.

A child saying their first word is a monumental achievement.  For Angel and those like him on the spectrum who are nonverbal, no one can say for sure if,  let alone when.  But just because they can’t utter a word doesn’t mean they don’t have anything to contribute.  Angel had enough impact on me to write this blog.

 

 

ASD and Sensitivity

On a question and answer website, a man posed the question:

Can being overly sensitive to criticism be related to autism? (Crying even though I’m a grown man.)

Sensitive to criticism? Well, if being crushed when someone so much as corrects me ever so slightly, then I plead guilty.  What critique might roll over someone’s back, it will stay on my back and it will feel like a ton of bricks on my backside.

Sensitivity to criticism is one of the Autism Spectrum Disorder (ASD) traits. Not everyone with ASD has that trait, but many of us do and have to contend with it.  There’s just no getting around it.

I am a substitute teacher’s aide and often work in ASD units. In addition to my own struggles with oversensitivity, I’ve seen it so often with ASD students.

One of the many students I have met is an elementary school student who is the least talkative in his class of half a dozen students. In the few times I have subbed for the aide in the class, I’ve not seen him become upset or angry. I have seldom, though, seen a smile on his face or heard him laugh.

The challenge for the teacher and aides is getting him to “talk”. He will not speak up if he needs something such as a piece of paper, or crayons, or even permission to go to the bathroom. I recall his teacher telling me that if he feels he is being scolded for anything, no matter how slight it might be, he will shut down.

I understood all too well. I was so much like that myself when I was his age. To this day, I still remember the one and only time I was ordered to stand in the corner in my first grade class.  This was over a half century ago and I still remember it as happening yesterday.  My crime was letting out a chuckle about something.  The problem was I did it after the teacher ordered complete silence.  I still remember peeking out of one eye looking down towards the hallway and having this strange but genuine fear my Mom might show up.

Since I was formally introduced to my never-sleeping constant companion, ASD, shortly after I turned 58-years-old, I have researched it as if I was studying for a final exam. Sometimes I think because I could give a long lecture on the subject, I should be able to control my emotions, symptoms, deficits. I should know by now that’s wishful thinking on my part.

Manning the Homefront

Over the summer of 2018, I had a couple of housesitting gigs for family members.  I call it “manning the homefront” while the members of the home go on vacations for some rest and relaxation (R&R for short).  My having a home to myself with a pet or two operating on my own schedule with a teeny-tiny amount of social interaction is my R&R.
My latest gig was enjoying the companionship of a white shaggy-haired pup named Bear.  His guardians, my grand-niece and her grandmother, and their clan were cruising the Caribbean.  They came back saying they had a good time.  Maybe, just maybe, as good a time as I had.
Bear maintained a grade of “A” for conduct until the last night.  He blew it barking his head off just after I climbed into bed.  I am sensitive to certain noises and barking or any critter sound is on my “meltdown” list.  He had barking spells before but they were brief and not just after I climbed into bed.  I got up and was going to put him away in his cage, but instead, he made a beeline to the backyard door and so I let him out.  He shot off running at whatever he was barking at.  I tossed a coin as to whether or not to let him back in.  He won the toss and fortunately for my sensitive ears, he proceeded straight to dreamland.
He’s the only dog I’ve met who barks at commercials.  I guess Bear thinks the dog on the TV screen can hear him.  Just like adults who yell at the umpire or referee.
One night, I took Bear out for a short walk.  We usually go before the Sun goes to bed but the Sun had already gone to bed.  It was a good thing I did since Bear did have a nature call.  Unlike previous walks with Bear, I was on my Segway scooter.  Scooter riding is one of my special interests, or in other words, obsession.  Bear walked and I rode.  I didn’t think that was fair.  So I stopped, picked Bear up in my arms with his leash, and together we rode on my electric scooter up and down the driveway in front of the house a few times.  I’m sure we were quite a pair to behold.  I wouldn’t have dare done such a thing in the light of day fearing what the owners’ neighbors might think.  After a little bit, Bear started squirming like crazy.  I got the impression that he preferred his own four legs.
Many folks like me who have an Autism Spectrum Disorder (ASD) do NOT ask for help unless they are DESPERATE.
An example of this happened during this gig when I went to check on my niece’s cat, Rubicon,  which was able to stay by herself; she just needed her bowl replenished.  Cats are more independent than dogs, generally speaking.  I was leaving the house and pushed the button on the GENIE (garage door remote).  The garage door did not respond.  I immediately thought of the battery and I managed to find one that matched.  Whatever GENIE’s problem, it wasn’t a lack of juice.  At least, thank the Lord, the garage door control panel on the wall did get the garage doors attention to raise and lower.  But that wouldn’t help me open the garage door on the outside.  In other words, I could only operate the garage doors from the inside.  I didn’t have a house key which wouldn’t have helped much since the door was really hard, and I mean REALLY hard to open.  Since the GENIE was my entrance in and out of the house, trapped is the word that came to mind.
After much analyzing over the situation, I found my path to freedom through the side UNLOCKED gate.  I moved my car out of the garage, went through the gate to get back in the house, closed the garage door, and then went back out through the gate.  If you can follow that, your brain is operating well.
Now I was on my way to my niece’s house ten miles away.  As I came close to a light intersection, a big semi-truck was in the middle of the intersection.  It wasn’t a case of it slowly making a turn.  Nope!  It wasn’t moving because a car was underneath it.  (I am not making this up!)  I didn’t make it across before the ambulance, fire trucks etc. showed up.
Two cars ahead of me turned down a street to the left.  I took their lead and did the same.  They took a right down another road.  I had my GPS on and it was confused about my going off the main highway  but it adjusted and led me down this road which led me to my destination.
My niece’s cat reminds me so much of myself and my ASD.  I had to go find her since she didn’t make an appearance.  I’m that way when my Mom gets visitors.  I live with her and if someone I don’t know shows up, I stay in my bedroom or escape if I have sufficient warning.  Since she didn’t come when I called her, I had to play along with her hide-and-seek.  I kind’a figured that part of my job as a pet-sitter was not to leave before I saw the pet in person to be sure she was alive and well.  I found her hiding upstairs by my grandnephew’s door.  She let me pet her but forget all about any notion of picking her up!  I understood though.  I’m not big on hugging myself.
Despite the hurdles,  I had a terrific time!  Housesitting is the ideal job for someone like me with an ASD.  My having lone time recharged my batteries while cruising on a cruise ship surrounded by people recharged Bear and Rubicon’s guardians.

How can I explain what it means to be a high functioning autistic to those who do not have autism?

Well, first, I’ll give you the Wikipedia definition:

Highfunctioning autism (HFA) is a term applied to people with autism who are deemed to be cognitively “higher functioning” (with an IQ of 70 or greater) than other people with autism.

Asperger Syndrome and HFA are often referred to as the same diagnosis. While they currently exist as two separate diagnoses, there is an ongoing debate about whether that is necessary. It is possible that, in the future, they may be combined into one category. In my opinion, I wouldn’t mind one bit if they were combined.

There is disagreement about how many people on the autism spectrum are on the high or low end of the spectrum. I tend to agree with the view that most people with autism are “somewhere in the middle”. That’s how I see myself anyway. Unfortunately, what media attention there is to autism goes to folks at the high and the low ends of the spectrum. Those who are unable to take care of themselves and the high functioning geniuses.

From working with special education students, some of whom have severe autism, I have seen first hand how it is extraordinarily difficult living on the lower end of the spectrum. Logic would suggest that people on the high end of the spectrum have it easy. After all, many of those with HFA are bright and may have impressive talents. But the reality is quite different.

For example, it wasn’t uncommon for my name to be on the honor roll. I graduated with honors. However, if I had been graded on social interaction, I would have flunked more than passed. I could count on one hand how many friends I had and I didn’t need all the five fingers to count. I wanted to be in the circle but yet I didn’t know how. It was easier to be the loner, doing the self-talk, and entertaining myself in my imaginary world. It still is and I just turned 60-years-old.

Here are just a few of the issues that get between people on the high end of the autism spectrum:

Those on the higher end have sensory dysfunctions as people in the middle or lower. An example a mild, moderate, or extreme sensitivity to noise, crowds, bright lights, strong tastes, smells, and touch. This is why I won’t walk into a crowded store unless I am needing to buy something really BAD! I mean really BAD! It partly explains why I avoid movie theatres. I don’t like crowds and it’s hard for me to sit still through a movie at home let alone in a public place. The other reason I avoid movie theatres is the movie prices.

What’s the difference between a simple greeting from someone from the opposite sex and a signal of romantic interest? How loud is too loud? When is okay to talk about your personal issues or interests? When is it important to stop doing what you enjoy in order to attend to another person’s needs? These are tough questions for anyone, but for those of us on the spectrum, it’s is overwhelming! I am a never-married woman who can’t even claim to having been a bridesmaid. Since learning I was on the spectrum two years ago, I have come to embrace my singleness now that I have an explanation as to why I am socially disabled.

Anxiety, depression, and other mood disorders are more common among people with HFA than they are among the general population. It isn’t known whether autism causes mood disorders, or whether the disorders are the result of social rejection and frustration—but whatever their causes, mood disorders can be disabling in themselves. I know this all too well. Since being put on antidepressant medication, I am doing much better. The medication isn’t a cure, but I have experienced relief in my mood swings.

Take it from someone who lives on the spectrum, people with autism have plenty of emotions. In fact, I can be far too emotional in the wrong situations. I am like a cat with its tail caught because of a change in plans. I react like  a robot up in arms going in circles screaming “panic alert” when my electric scooter’s tire goes flat. I can do a good many things that don’t come easy to others but ONLY when the situation is predictable.

Then, there is the awesome task of following verbal instructions. I deal with this at home and school. A teacher once asked me, “Get the phone.” I went to her landline phone even though I was scratching my head since I hadn’t heard it ring. Actually, she wanted me to get her cell phone and hand it to her. As you can imagine, this can cause any number of issues, ranging from serious problems with the police to inadvertent mistakes at work.

HFA is what it says. It is not an easy or simple thing to live with. For those caring for, employing, teaching, or working with people on the higher end of the spectrum, it’s important to remember that autism is autism.

Living My Faith

Verse of the Day

August 22

James 2:17

17 In the same way, faith by itself, if it is not accompanied by action, is dead.

 

Faith is a hard word to miss when reading the Bible.  I did a Google search wanting to know how many times the word “faith” appears in the Bible.  One can learn just about anything on Google or other web browsers.  Google’s answer was 366 times in the King James version of the Bible.  I’ll just say I took Google’s word for it.

I have heard more than one interpretation of James 2:17.  What this verse says to me is simple:  my faith is dead if it’s all talk and no walk.  It’s one thing to believe the Lord has my back; it’s another to act on that belief.  If shortly after my “SOS” prayer, I am worried about my “SOS”, I am not backing up my faith with action.  Even worse if I panic and take matters into my own hands.  I know from painful personal experience that just increases my “SOS” stress level.  I made the hole I was languishing in just wider and deeper.

Some of my prayers’ answers came quickly and some take a long time in coming.  Waiting upon the Lord is an ACTION!  It may sound simple but it is NOT!  I’m reminded of that every time I go to the doctor’s office.  First, there’s the wait in the lobby.  I learned not to get excited if I am called in with little waiting time.  Why?  Because usually I’m waiting far longer in the cold examining room sitting on an uncomfy examining table for the doctor to make a brief appearance.

I’d rather do the long wait and have the right answer than to have an immediate answer that would only make me wish I had waited upon the Lord.  I want out of the hole I’m in instead of falling into another.  It is a continual lesson that the Lord knows not only what’s best, but the when, where, and how of it.

As one who is addicted to modern technology, one of my gadgets is an illustration to me of putting faith in action.  When I bought my first Toyota Prius, I had my first encounter with GPS navigation tool.  Since gadgets are one of my autistic obsessions/special interests, it was right up my alley.

I recall a long drive where one of the cities on my path was Nashville.  I was relying on my GPS big time since Nashville was unknown territory.  Suddenly my GPS said to take an exit off the interstate highway.  I said, “Are you sure about this?”  I wasn’t expecting GPS to answer but I talk to my car and myself all the time.  I had my misgivings but I exited off the interstate.   My GPS was then leading me through neighborhood streets, the library, schools, etc.  My anxiety was rising with each intersection.  Then, low and behold, Nashville’s skyline was staring right ahead of me.  I thought I was supposed to be going around Nashville, not in the thick of it.  Just in the nick of time, my GPS spoke up and said take a right turn.  It didn’t have to tell me twice!  To my utter relief, it led me up an entrance ramp where I rejoined the interstate.

My GPS is like the Lord’s spirit speaking to my heart.  If I don’t listen and follow the conviction on my heart, His guidance won’t do me any good.  It will be just like not listening to my GPS’s instructions.  I believe the Lord works in my life, but if I shun His guidance, I’ll be as lost as I would be if I turned off my GPS.

There are plenty of Bible characters who have a story of putting their faith in action.  Noah built an ark because God told him to do so and not because what the sky was telling him.  Daniel disobeyed the King’s orders by continuing to pray to God only knowing it meant the death penalty of a lion’s den.  Daniel did his part and God protected Daniel from the lions’ mouths.  God told Abraham He had a promised land for him and his descendants.  Abraham didn’t just only believe God in his heart.  He took action by packing up him and his family, servants, and possessions without knowing where in the world he was going.  If he had just stayed where he was, there might not be a country named Israel on the world map.

 

 

Aspie Thorns

Flowers is not on my list of favorite topics. I occasionally take the time to look at flowers, but most of their names are unknown to me. I confess I can name only two kinds and that’s tulips because of their shape and roses because I’ve seen plenty of people receive a dozen or so. I know enough about a rose garden to know that they are accompanied by thorns. Roses are a delight to the eyes and sweet smelling to the nose, but the thorns are a pain to the flesh.

My Autism Spectrum Disorder (ASD) has roses and thorns.  I gave my ASD the nickname of “Billy”.  It is therapeutic for me to say to myself “It’s just Billy” when my ASD slaps me in the face.  Here are some of Billy’s thorns…

People react to the mention of Billy with skepticism in their face.  If I really had Billy, I would be spinning in circles and slapping my arms like the kid in the movie.  Or, I would be the female version of the suspected aspie Albert Einstein.

I frequently recall a painful or embarrassing moment and cringe.  It could be a moment of yesterday or as far back as first grade.

When you tell a funny story and it is taken seriously.  When you tell a serious story and it tickles funny bones.

In panic mode when someone asks me for directions.

When the noise level rises too high, I picture myself as a tiger on a tear.

I had more imaginary childhood friends than real ones.

I’m too weird to be normal but too normal to have a Billy.

 

 

 

 

 

Socializing on the Spectrum is not the Only Challenge

I am having a conversation where I am telling a story. I have an image in my head but for the life of me, I can’t think of what the image is called. The word doesn’t pull up. I describe the image I see so clearly in my mind. It only adds to my frustration level when my brain pops the word up long after the conversation. Granted, this surely happens to most people, but in my life on the spectrum, it is the “norm” instead of the exception.

Asperger’s affects every aspect of my life. It goes beyond the challenge of socializing with my fellow man.  Such as when, where, and how I eat. I dine alone in my bedroom. My meal schedule is way off the charts from a typical schedule of like 7 a.m., noon, and 6 p.m. I even fix a sandwich or slice a pizza in my own peculiar way and eat items on my plate in a specific order.

Repetitive movement is as essential as water and air. I pace the floor when agitated and I do the same when excited. I rock in a chair that isn’t a rocking chair. I bobble my knees without thinking about it. I have some of my best conversations doing the “self-talk”.

Fine motor skills have to do with the small stuff when it comes to movement. My handwriting bears a strong resemblance to chicken scratch. I dread chores where I have to pick up objects between my thumb and finger. Such as pierced earrings. As hard as I try to hang on to the earring or “back”, it happens without fail of one landing on the floor. Trying to find a tiny earring or the backs to them, is like looking for a needle in a haystack. To compensate, I buy a pack of cheap earrings at a dollar store just to replace the missing “backs” in hiding.

Of all the symptoms I deal with living on the Spectrum, the meltdowns are the toughest. They are the volcanoes. Sometimes they come upon me without any warning. I may or may not know what the trigger was. A trigger can be a sound or smell that raises tension in my body. It may be a pet peeve and I overreact to it. If I can walk away from the trigger, the odds improve of meltdown relief. If I can’t, I will erupt with rocking and tears.