The Signs Were Always There

I don’t know if the signs for Autism Spectrum Disorder (ASD) are as numerous as the stars, but it seems that way.  ASD is such a broad umbrella and each of us on the Spectrum is as unique as those who aren’t.

MY SIGNS

I run in place or pace the floor when I’m excited and when I’m just the opposite.  I do it when I’m doing chores around the house.  I do it to help me think.  I do it to calm my anxiety.  I do it every day.  I used to do it “in the closet” so to speak outside the view of witnesses, but I have since come out of the closet at home with my stimming.  I don’t bother hiding it from the two family members I live with.  But beyond the house, I am on guard of where I stim and where I don’t.

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When people come to visit my Mom’s house where I live, they’ll usually find me in my bedroom pursuing one of my interests if they care to find me. I’ll pop in and out if I think of something to say. 

If I see someone I know at the store, I’ll go in the other direction because I can’t think of anything in common we have to talk about or fear they’ll ask questions I am not prepared or want to answer.

I am a “soloist”!  I prefer to eat alone, I prefer to watch TV alone, I prefer to play video games alone, I prefer to go walking or bike riding at the park alone, I prefer to worship in a quiet place alone, and I prefer to do chores and errands alone.  An exception would be shopping but only if someone would do the driving so I wouldn’t have to.  There is no one I live with who will volunteer though.

Image may contain: possible text that says 'love to be left alone to get on with things. It is important to me that there are clear instructions, a clear project outline and a clear goal from the start, because it makes the process of working alone so much more efficient.' Alis Rowe facebook.com/thegirlwiththecurlyhai &'

 

An in-person conversation can be a delight or a booby trap.  I treasure the few I know who I feel as comfortable with as my overworn faded jeans.  However, most times I feel trapped in a conversation.  Questions I didn’t see coming, for instance, can throw me for a loop.  I tell a joke and the person doesn’t get the punch line.  If the topic is about something I know little about or care nothing for, I am racking my brain for an excuse so I can get out of the trap.  

 

Image may contain: possible text that says 'Crnde Jolkes A good way to get out of a conversation is to take off one of your socks and hand it to the person talking. Dirty Crade'

 

My daily hobby is having a monologue with myself.  I don’t just hold one in my own space, my bedroom.  I’ll have a good talk with myself on a walk at the park or a ride on my bike.  Back when I was a kid, I would do it at the side of the house while pacing back and forth.  How often?  I actually made a trail in the grass.  When I retired and moved back in with my Mom, I am in the same backyard but instead of the side of the house, I take the whole backyard to walk and talk.

Autistic Axolotl meme: I monologue more frequently than characters in a Shakespearean tragedy.

 

I am quiet as a mouse in group settings.  My mind is a busy bee taking it all in.  I will dwell on the topics of discussion long after the group chat was over.  But on those rare occasions when I have the podium, my mask comes off and the extrovert in me takes over.  The best compliment I ever received after giving a presentation was “I didn’t want you to sit down.” 

I am a never-married.  I guess I fall under the category of asexual.  I admit the thought of homosexuality has crossed my mind.  I crossed off the possibility though.  I had a tremendous crush, on a male co-worker a decade or so ago.  I had it hard for like two to three years.  This was before I learned I had ASD.  In hindsight, with the knowledge of my ASD, my “crush” was obsessive behavior.  My attempts to get his attention were downright awkward.  Poor guy!  My not getting the hints that he didn’t have a crush on me was just one example of my being socially awkward.  I will say this:  It was as close as I ever came to this thing called love.

My signs are just mine.  Some of my fellow travelers on the Spectrum share some of my signs and some do not.  For instance, I have worked with ASD students who were quiet, like me, and I have met a few chatterboxes too. 

I suspect there are a lot of adults out there who are living on the spectrum who don’t know they are. This is just my opinion that those adults who know they are on the Spectrum, and those adults who are but don’t know, have this in common:  We know we are different.  And that difference was agony for me until I learned the explanation of what was behind that difference.  The agony of being different has eased tremendously since I have been in the “know” category. 

It took me 58 years, the right job as a special education aide, and a 12-year-old to introduce me to what was behind the signs that were always there.

Conversation Popper

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I am in the midst of family or friends who are having such a wonderful time of conversation on a topic(s) they are excited about.  The problem for me is I have no input on it.  My mind goes blank.  If by chance someone in the group brings up a topic right up my alley, I’ll come to life until the topic drops.

If this get-together is being held at home where I live with other family members, my bedroom is where they’ll find me if I cross their minds.  During their visit, I turn into a “popper”.  I’ll pop in if I think of something to say that might attract their attention.  Once I have my input, I retreat to my space.

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I  am not a total “no show” to houseguests.  I can even pretend to be engaged.  But enjoy it?  No.  I can’t make my inner self enjoy anything.  Either I do or don’t.

I’m not this way because I want to be the “mute” one in a group or the one who doesn’t join the others at the dinner table with the family.  I can’t make someone understand who wonders “why don’t you just do it?”  One would have to dwell in my brain and even if that were possible, I doubt I’d have any takers.

I wouldn’t ask someone with asthma “why don’t you just breathe normal-like?”  All I could give an asthmatic is empathy.  That’s all I ask too.

What might surprise folks around me is it does bring tears to my eyes sometimes when I’m amidst such joy and excitement and can only pretend that I feel it too.

Guest Anxiety!

Image may contain: possible text that says 'People on House Hunters are always saying that they need room to entertain and guest bedrooms so family can visit. I need a moat filled with gators.'
A popular saying that fits me, an Aspie, pretty well:  I really do like people; I just don’t like being around them much.
Having guests means “social interaction” and so I don’t welcome it or seek them.   That’s why those who are guests in my Mom’s house usually find me in my bedroom.  That is if they care to look.  There is an exception.  I do enjoy the visits of the children in the family who think I’m the neatest Great Aunt in town with all my electronic gadgetry.
There are times when company comes calling and I know it would be a social ‘no-no’ to refuse their presence.  One of those times was when I did a two-week dog sitting tour for some family members who live out in the country in Eastern Oklahoma.
The sweet solitude in the hills of Oklahoma was interrupted by guests — a nephew, his girlfriend, and her Australian Shepherd dog.  Along with the dogs, I was sitting, we had four dogs under one roof.  It was a good thing I brought my sedative pills along with the anti-depressant I take daily.
The night I was waiting for them to arrive was one long night … and I do mean a long night.  I knew they were coming after they got off work.  They both work at the same place and since they get off late, it meant they would be arriving in the wee hours of that morning.  I couldn’t get my mind off of it and so I saw every half-hour on my Amazon Echo digital display clock.
One of the dogs let out a holler around 3 a.m.; not that she woke me up.  I looked out and didn’t see any vehicle.  I let the dogs out for a bit.  I even walked out carrying a big flashlight and didn’t see anything.  I later realized they parked their jeep in the garage and I didn’t notice it when I was roaming in the dark.  I noticed the dogs kept smelling around the guest room.  The mystery was solved when I saw someone switch the bedroom light on.
I gave up on any notion of sleep-eye.  Asperger’s and company mix as well as oil and water.  And, one being someone I had never laid eyes on fed my anxiety.  The three dogs I was sitting for couldn’t sleep either because they were itchin’ to investigate what they were smelling that was on the other side of the door.  Unbeknownst to them, one of the scents belonged to an Australian Shepherd dog.
The three dogs got their breakfast early at 7 a.m. since I didn’t have to get up because I was already UP!  The young-uns got up around 10:30 a.m.  Well, at least some people got some sleep that night.  After I talked to them a bit, I escaped going shopping by myself to get a break from socializing.  I dearly love my nephew being his favorite aunt, but it felt so good to be away by myself for a while.
My anxiety over the long night diminished as the day wore on since the couple pretty much did their own thing today.  They were the ideal “Aspie” guests!  My nephew’s sweet girlfriend had a brother who has hi-functioning Autism too.  She described him as a computer wizard.  Well, now he’d be somebody I’d be delighted to meet since I’m into computers too.  Her having a brother like me gave me something to connect to her with.
It was good to see them, but I admit I was in “recuperation” mode after they left.  I was back in my “comfort” zone when the house was back to just me and the three dogs.   
Image may contain: ‎possible text that says '‎ו' don't mind company sometimes, but there is still usually an overwhelming desire to be alone. I usually feel quite relieved when the interaction ends. A large pressure disappears.' Alis Rowe facebook.com/thegirlwiththecurlyhair‎'‎

Counterperson Anxiety

Most people have triggers that will raise one’s anxiety.  Such as if one walks into a convenience store and the person at the counter is not paying with cash but insisting on cash with a gun in hand.  That would do it for most folks.

One of my triggers is scheduling and keeping an appointment. Doctor appointments are the worse, but other kinds of appointments are not anxiety-free either.  It’s as much a battle of calling and making the appointment as it is in keeping it.  When I have to call and make one, I actually secretly wish to myself that no one answers the phone on the other end.

A necessary appointment to keep me on the road is a car check-up.   After all, a car doesn’t change its own oil or rotate its own tires.   The auto industry is working on cars driving themselves.  I’m all for that.  It would be even better if my car could get itcheck-up without my having to tag along. 

It isn’t the wait so much as it is interacting with the counterperson.  Most social interactions, formal or informal, are not welcomed by me.  On my car’s last check-up, my autistic trait of the fear of posing so much as a question to the one behind the counter increased my waiting time by an hour.  My car didn’t get any attention until a counterperson guessed I was the owner of the blue car just sitting by its lonesome in the car-waiting lane.  She asked if I had checked in with someone.  Sadly, I had been debating in my mind as I sat in the waiting room about whether I needed to check-in or not.  You see, I had made the appointment on-line.  Didn’t they have the information since they had the car?  Oh, well, I was at least grateful she didn’t admonish me that I should have done that when I first walked in.  I felt bad enough as it was.

A good week is a week without any appointments.  I have more good weeks since I am now retired.  When I leave the house, it is usually to go where I want to go.  It is nice to on those occasions when I am out and about with no pressure to interact with my fellow man.  Even shopping trips are not as much a strain since the arrival of self-service check-outs in my local stores.  

I can say there’s practically “0” chance of my forgetting an appointment.  Thus there is no danger of my being charged a fee for not showing up at my appointed time.  Why?  The anxiety of the appointment will start within a few days before the appointed time.  And, more likely than not, I will have a nightmare living through the appointment before the appointment.

 

 

I DON’T UNDERSTAND EITHER

I have been asked by neurotypical relatives and friends, “I don’t understand!  Why you can’t just…?”  I don’t like the question because I don’t have an answer that would satisfy the one asking.  Maybe that person would be surprised how many times I’ve asked myself why can’t I just do what so many people do without a heavy dose of anxiety.

I don’t understand why I instantly become the silent observer when I find myself with more than one person.  I don’t understand why I have anxiety pangs when my phone rings or I have a voice mail message.  I don’t understand why I need to talk to myself as I do to breathe.  I don’t understand why I wring my hands and pace the floor when excited or anxious.  I don’t understand why I repeat out loud or in my head the same senseless phrases every single day.  I don’t understand why someone playing music on the radio or some other device can upset me to the point of a meltdown.  I don’t understand dating, sex, and marriage.  I don’t understand parenthood.  I don’t understand grieving and funerals. I don’t understand why it is easier for me to show my affection for others in writing than to display affection or speak of it.  I don’t understand why I have this constant daily need to live in two worlds:  the real world and my imaginary world.

I don’t understand why people enjoy being with others rather than alone.   I don’t understand why social gatherings, such as club meetings or church services, can be enjoyable or uplifting. I don’t understand how simple it is to give or receive a hug.  I don’t understand why it is just a simple thing to ask a store employee a simple question such as if and where they keep an item I am on the hunt for.   I don’t understand how anyone could look forward to going out on a date than to dread it terribly.  I don’t understand how the phrase “I love you” can come easily and often off of one’s lips.

I sincerely don’t understand what comes easy, natural, no big deal does NOT to me. I don’t understand what comes naturally for me to do doesn’t enter the minds of others.

I’ve heard it say those who have Autism can’t fully explain it and those who don’t can’t fully understand it.  Although I don’t understand, it is of such comfort and relief to know there are many others who don’t know understand why they just can’t do whatever either.

GROPING FOR WORDS

I have moments when socializing I think to myself, “I wish someone would give me a script!”  With living on the Autism Spectrum, I could use one when undertaking the challenge of a conversation.  (I gave my Autism a nickname of Billy).

I recently was visited by a couple of family members.  As I typically do, I retreated to my bedroom where I continued hanging out on my computer.  I heard the chatter in the living room between my relatives and had no urge whatsoever to join them. Their conversation covered topics I had “0” input or interest in.  Billy isn’t a secret to them and they’ve come to expect me to stay in my room when they come over.

One of my nephews will pop into my room to say hello.  He’s one of my top favorite fellas in my life and that’s saying a lot coming from me who has had few males in my life. However, we don’t have many mutual topics of interest. Such as I am interested in politics and he’s sworn off voting ever again. I can understand why he feels that way though.

We do talk about my electronic gadget collection since he does seem infatuated by it or maybe he’s just infatuated with how many gadgets his eccentric Aunt has.  His visits are usually months apart and so by the time he visits, I’ve add another gadget or more to my ever-growing collection.  This keeps the conversation going for a while depending on what I am showing off and his interest in it. After the demo, I am GROPING for something to say to disrupt the deafening silence. If he isn’t wishing for an escape hatch, I know I am.

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On a shopping trip with my Mom, we ran into a lady we’ve known for around 40 years and hadn’t seen in like a decade.  I was glad to see her and even exchanged two hugs worth.  Her idea, not mine.  HA!  My Mom got more hugs but two was my limit.  My Mom and the family friend were more engaged in conversation than I was.  I felt more or less like a standing statue watching the other customers maneuver around us.  I would pop in the conversation if a topic came up I could contribute to.  I wish I could have enjoyed it as much as they did but it just doesn’t work that way in my brain where my Billy resides.  Billy is what he is.

 

A CONTENT LONER

Life changed after that lightbulb moment when I first suspected that Autism Spectrum Disorder (ASD), commonly called Asperger’s, wasn’t just a medical term for those students in a special education class where I often subbed for a teacher’s aide.  One of the positive changes was no longer worrying about being a loner.  I had an explanation as to why I preferred to do most anything by myself.

I never thought I would ever say I enjoyed being in a group.  Well, I don’t cater to one where I have to physically be with group members.  I found ASD groups on FACEBOOK (FB) where I could be among my own people, so to speak.  I could participate instead of only observe.  Since the groups were online, I didn’t have to worry about a fellow member inviting me out for coffee.

One of my absolute favorites is the daily postings on FB from Alis Rowe, from the U.K.,  who refers to herself as “the girl with the curly hair”.  The below posting is me in a nutshell when it comes to socialization.

 

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I’m isolated in a group. I’m delighted conversing with one person on a mutual-interesting topic. I’m most content alone.

 

My Magic Number

I have an allergic reaction to invitations that involve socializing.  They make me CRINGE!  Fortunately, my social circle is size “small” and so I don’t get many invites to cringe over.

A cringing moment came not long ago when I was with a relative and an acquaintance.  I was their driver to a small house party of approximately 4-5 guests.  The friend invited me to stay and join them.  He said, “After all, small is your magic number.”  I immediately knew he was referring to things he’s heard me say about living with my Autism Spectrum Disorder (ASD).

I immediately put on my “actress” hat and pretended to be cool, calm, and collected.  I didn’t show a hint of my inner reaction of lava spewing out of a lit-up volcano.  I kept my mouth shut.   I just smiled and kept driving.  Fortunately, my relative who didn’t have a clue changed the subject.

He may have thought my ASD was no excuse since their group, most of whom were people I also knew, would not give me any discomfort.  That is, that’s how he interpreted what I have said.  Well, I don’t communicate too well in person and so I may not have been clear as mud to him.  Writing is what comes naturally to me.  Here’s what I would say to him and anyone who wonders why I am a loner and likes it that way.

My magic number for living on the Spectrum, with all its traits and quirks, is ONE.  I prefer to work, play, eat, worship, and just about everything else with ONE – that being me!

An okay number is two.  If I am engaging in conversation with another person on a topic I can give input on, I’m an eager-beaver!  It’ll be a race as to which one of us dishes out more conversation than takes in.

Any number above two is above my comfort level.  I can be full steam ahead in conversation with another, but if just one person chimes in, I go mute.  It isn’t a decision by me to clam up.  It’s just how I’m wired.  Three or more people will usually prompt me to put on my “actress” hat and play the part of an engaged listener.

It’s hard, if even possible, to explain why I seemingly have a mute button attached to me when in a crowd of three or more.  A person not on the spectrum might say, “Well, just speak up!”  I’d say, “Please take my word for it.  I don’t have it in me.”

ASD is a neurological condition.  It’s not my imagination or my choice to be an observer more than a participant.  In the midst of three or more,  I turn restless.  I may bite my nails, chew gum, play with my hair, or fiddle with my fidget cube I keep in my pocket for such emergencies.  If you can imagine being in a straight jacket and struggling to get out of it, then that’s how I feel inside in a social setting of 3, 4, 5, etc.

If your magic number for socializing is a number above two, good for you.  I can only imagine what it is to be that way.  If your magic number is the same as mine, rest assured you are not the only ONE!

 

Coping after the Party

The No. 1 rule I have with getting out of social events is to select from my list of excuses.

My No. 2 rule is not to overuse any of those on that list.

British author Alis Rowe, who writes about Autism Spectrum Disorder (ASD), stated “I’m just not really that fond of ‘socializing’. I’m not saying that I can never have fun being with other people but I just tend to have more fun when I’m on my own!”

Same with me!

I have oodles of fun by myself. I confess when I have the house to myself, it is like being on a vacation without going 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 I’m wired.

Parties are hard for me to both attend and enjoy, but not impossible. A coping skill for me is eyeing a party outsider too and striking up a conversation. It has worked but it isn’t full-proof since it won’t work if I am the only party outsider. And, it won’t work either if the other one sitting alone does not engage in chatting with me.

The part of the party I look forward to is when the first party guest leaves. I don’t volunteer to be the first but I’ll not be far behind the first out the door. 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 like this one.

I have a few 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”.

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.