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.

 

Now It Makes Sense

In the weeks and months that followed my self-diagnosis of Asperger’s, reruns of past episodes of my childhood played in my mind. I recall one day in particular when I subbed as a teacher’s aide at the elementary school I attended back in my school days.  As it would anyone visiting their childhood school, memories flooded my mind.  It was different though because I was looking back with a new pair of lens.

The knowledge of my living on the Spectrum solved the mystery of why my Mom never had to tell me to do my homework. It explained why I managed to get through my entire adolescence without a curfew. Or, why I had no phone in my room or desire for one. It explained why I was the silent one at the very few parties I attended. It explained the loneliness amidst people while at school, church, visiting relatives, etc.  It explained why loneliness wasn’t around when I played with my imaginary playmates as I paced in some private place. 

It now makes sense why a change in my daily routine was and still is as upsetting as I imagine it would be for a pilot and crew to be in a no-fly zone. I know better why even a slight word of criticism would shut me down.   I do mean down!  Even at my age, criticism has a melting down effect.  I will replay a confrontation where someone scolded me, justified or not, for not only days but years, even decades.  I truly wish I could put such memories in a “trash bin” like I do junk e-mails.

I am so thankful I had my lightbulb moment.  For me, that moment occurred when I was subbing in an Autism unit and observed a child do what I never saw anybody do but for me.  When I saw the child step into her imaginary world in the middle of the classroom, it was like watching my own self at her age. 

Since that moment, much about me started to make sense.  It is like a curtain opened up.  Despite the hardships of the past and present, I accept having Asperger’s. It is better to know than to be in the dark about what is behind my feeling like an alien in the neighborhood.  

If I were asked to describe myself in a few words, it would be a “silent observer”.  I would have said that decades ago.  But since knowing I live on the Spectrum, it makes sense that I am such.

I’d Rather

I’d rather someone else take care of returning or exchanging at the store counter.

I’d rather someone else call the cable company.  

I’d rather not join others to dine at a restaurant.

I’d rather prepare and eat my meals at my own routine time and place without witnesses.

I’d rather no one touch any of my collection of electronic gadgets without getting a nod from me.

I’d rather someone else in the house shop at the neighbor’s yard sale.

I’d rather not go to a movie theatre even with my best friend with free movie tickets. 

I’d rather go for a walk at the park and talk to myself than go on a picnic with a group no matter how well I know them.

I’d rather take a detour when walking/riding a bike at the park to avoid passing a person(s) on the trail.

I’d rather take off than having to hear music that is making my blood boil.

I’d rather not go to bed anywhere without my favorite pillow, eye mask and white noise computer app.

I’d rather not drive downtown or anywhere else where there are lots of people, traffic, and one-way streets to maneuver through.

I’d rather not attend a meeting of any kind.

I’d rather not sit at the adult table but the kid’s table when the family gathers for the holiday feast.

I’d rather not stop a task until the task is complete.  This is a good thing for me as far as getting things done, but not a good thing if I am shoveling through several inches or a foot of snow.

I’d rather go about my day with a schedule printed out or tucked away in my thinking cap.

There are times when “I’d rather” is “I must” instead and when so, I just cope as best I can.  I don’t get a day off from living on the autism spectrum.