My Friend in Cyberspace



WARNING:  Don’t get too close to me!

If there are words to explain how Autism Spectrum Disorder (ASD) affects my communicating with my fellow man, I don’t know them. It’s a mystery to me and I can only hold up my hands and say to myself, “it is what it is”. I relate to the above posting by Alis Rowe, author of “The Girl with the Curly Hair – Asperger’s and Me”.

I have a friend who knows more about me than those who’ve known me for most of my 61 years of living. The odd thing is we have never met in person. Our friendship is proof that one-on-one contact isn’t required.  An exchange of on-line messaging has been sufficient.  It works well for me since writing is my passion and social interaction is not!

My friend, who is long-distance, gets an e-mail update on “what’s going on with me” every Sunday without fail.  I do mean every Sunday; not Monday, or any other day of the week.  It is the “routine” thing that’s a common ASD trait.   If she didn’t get a message from me on Sunday, she’d know that I must be in utter misery on my backside or in a coma.  

Once upon a time, my friend and her best friend were on vacation and within driving distance.  She messaged me and invited me for dinner at a restaurant about halfway between my house and her hotel.  One would think I would want to lay eyes on someone who knew me better than most.  But instead of excitement, I felt utter panic.  It was as if she issued a threat instead of an invitation.  It was unexpected and threw me for a loop.  I racked my brain and came up with an excuse which is typically the way I respond to invitations. 

Why I didn’t just do it?  As I stated earlier, “it is what it is.”

I admit I don’t make a good friend in person.  I’m not a good choice to chat with, dine with, or take in a movie with.  But I make a good casual friend and cater to having relationships of those whom I am fairly sure won’t invite me over for whatever.  Most especially, the few in my life who get updates from me on a routine basis and above all, want them.

 

 

 

 

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.

 

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”.

Company Anxiety

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

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

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

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

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

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

What’s It Like Having High-Functioning Autism

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

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

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

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

I sleep with an eye mask to block out the light. I turn on “white noise” to block out the sounds at night I am sensitive to. I am sensitive to music that is pushing all my buttons. I don’t dare complain to the one playing the music, much less scream or cry because it would draw unwanted attention. I must, as I often have to do, pretend I’m just fine while boiling underneath.

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

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

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

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

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

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

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

A word that is on my hate list is “group”. It doesn’t matter whether it is a group meeting or group outing. It doesn’t matter whether it is held at the workplace or home base. When more than two are gathered, my mute button comes on. I always see myself as the square peg in the group of round pegs.

Moments on the Spectrum

The taxman cometh but not for me. My Mom’s tax preparer calls to let her know hers and my brother’s income tax form is complete and is coming over to deliver. I overhear the phone conversation and an alert message pops up in my brain. STAY IN MY ROOM! I am well within earshot of hearing the conversation between him and my Mom. He sounds like a friendly person. I know logically this house visitor is not a threat, but it doesn’t relieve the anxiety of the thought of making an appearance. I stay put until the coast is clear.

Image may contain: text and indoor

Maybe the reason I prefer dogs over cats is because cats remind me too much of ME!

I am on a grocery errand for someone else.  The object of the errand is a bag of potatoes on sale.  The person is emphatic in telling me if there aren’t any of the potatoes on sale to ask a store clerk for a raincheck.  ASK A STRANGER?  The store has a bad habit of putting items on sale and not keeping up with the “supply and demand”.   I had no problem with getting the potatoes, but the thought of asking a grocery clerk was equivalent to asking me to climb a mountain.  My hopes of there being plenty of 10 oz. bags of potatoes were dashed.  Not a one!  Instead of asking for a raincheck, I paid the difference of $3.00 and got a bag two pounds less.  I was safe from being found out since it wasn’t a noticeable size difference. I emptied the bag into where the person kept her potatoes.  A small price to pay for avoiding a mountain I chose not to climb.  I did wonder if, and if so, how big a price difference would it have taken me to climb instead.

I’m meeting an eye doctor for the first time.  On the way there, my fingers dig into the steering wheel.  I know I have to show up.  I lost my glasses and later my backup old prescription glasses.  The necessity of glasses didn’t reduce my anxiety of meeting a stranger.  I arrive at the same time the eye doctor does.  I immediately sense a “welcome mat” from this person.  Her smile and friendly voice put me at ease.  My mute button turned off and I took off my mask.  Then, I talk and overshare way too much to someone I had just met as I often do.

I see someone at the store I think I know. I’m a tad relieved the person hasn’t seen me yet. I hurriedly go to the next aisle and can hear his voice. It’s his! Now this is someone I love dearly. I often e-mail this person once a week, at least, with the ins and outs of that week as if I was a reporter, editor, and publisher of my own “weekly update”. He has told me more than once he is a HAPPY subscriber to my e-mails. So what’s the problem of dashing over and chatting with him? My brain doesn’t work that way. I avoid him like the plague, going through a maze of aisles, until I make my exit out the store door.

I’ve lost contact with a friend. My friend may have given up on me. Too many of her invitations to hang out together I passed up. She may want more than texts. Even my long e-mails of “What’s Up With Me” isn’t enough I guess. If we were just long distance friends, that would be okay with me. I suspect not for her though. I am not the best at being a friend in person, but I make a good pen pal.

What I can expect on Thanksgiving, Christmas, and other get-togethers, etc.

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.

Scooteritis

My obsession with electronics has recently broadened to electric scooters.  I used to have a thing for “vacuums” to the point that my apartment resembled a used vac store.  Well, now it is scooters.  Within a couple of months after coming down with this obsession, I have five scooters.  Just call me a scooter-bug. 

The first member of my scooter herd was a Segway mini-transporter that I nicknamed “Seggie”. 

My second was a different breed than my Seggie.  It belonged to the “glider” branch of electric scooters (a pink GoTrax scooter) that I appropriately nicknamed “Pinkie”.  I wanted to have two that were different breeds.

My Pinkie broke down shortly after I bought her and the company was kind to send me a replacement.  In the meantime, not knowing Pinkie would be replaced, I got a Razor scooter nicknamed “Raz”.  So I didn’t intend to have three, but I quickly got used to the idea. 

Then, Raz’s chain stopped me in my tracks.  While it lay in the garage going nowhere, not knowing if it could be repaired, I went ahead and got Seggie’s little brother, a mini-Seggie, that I nicknamed “Lil’ Seggie”. 

Image result for segway minilite

Then, Amazon Inc. had its annual BIG sale for its prime members.  The sale was almost a full two days worth.  I succumbed on the second day purchasing a hoverboard at a sale price I didn’t think I would see again until maybe next year.

Image result for hoverboard

The hoverboard (nicknamed Hovert) is the most challenging of them all to tame.   On my first ride, I fell off of it within 60 seconds.  Well, twice.  I wondered at times if it would be UNtameable.  My playmates, grandniece and nephew, avoided Hovert like the plague.  I saw on Amazon it had an accessory that could turn Hovert into a go-cart.  Although, I was slowly but surely taming Hovert, I purchased the accessory thinking I could get more use of Hovert by it being a go-cart instead of hoverboard only.

 

 

My riding around on a scooter grants me far more attention than I want.  Most especially with Seggie and Lil’ Seggie since in a town of 43,000 people, I may be the only owner of one.  If I traveled downtown, I’d probably run into a fellow Segway scooter at a tourist spot.  If I do cross paths with a fellow scooter, it is someone far younger than me.  Hey, I never acted my age anyway.  When I was 10, I was going on 40.  Now I’m near 60 and I’m heading back to 10.

Maybe it is wishful thinking but I think these scooters are helping to improve my balance skills.  A lack of fine or gross motor skills is one of those ASD traits.  I’m not absolutely sure about that.  It took weeks before my swollen big toe looked like it did before Pinkie fell on it.   One of my thumbs hasn’t been pain-free since Seggie fell for a curb and took me with him.

They have given my pride and joy, my four-set of wheels, “Toyota Prius”, some cosmetic changes (scratches in loading and unloading the scooters).  So why in tarnation do I keep at scooting?  There’s no middle ground with my ASD.  When I become obsessed with something, the intensity can be stronger than even my long-held fear of the sensation of feeling the earth move under my feet.

I think I’ve completed my scooter family and plan no more family additions until…well, they start playing Christmas songs on the radio.  But I wouldn’t place any bets on that.

 

 

 

 

 

 

 

 

 

 

 

 

What is missing in an autistic person that a normal person has?

Someone asked this question on a website for asking/answering any number of questions on any number of topics.  I responded by first saying, “In my case, a social life.”

To put it simply, I have a social disability. Unlike those around me, family and friends, I don’t like to be around people much.  If I am with one person discussing a topic that’s right up my alley, I am talking that other person’s poor leg off.  But add another person or more to the conversation and I go into silent mode.

It is well-documented those with Autism Spectrum Disorder (ASD) (my nickname for it is “Billy”) are not likely to be the social bufferflies in their community. I could manage better than those I know of going days in solitary confinement without going mad. Torture for me would be in the midst of people, strangers or not, around the clock with no break of lone time.

I shutter at the word “group”. It can be followed by the words “meeting” or “social” or “gathering” and I will have the same reaction of a frown. It is similar to the reaction I have at the smell of turnips cooking, or the bass sound of a loud stereo, or the glare of the bright lights. I’d rather be far away on another galaxy than sitting inside at a group session pretending to listen while hoping someone will volunteer to be the first to announce their departure.

Now if I am at the podium doing the speaking, it’s a whole different story.  Even better, if I am talking about one of my passions.  Now why I hate being in the audience but thrilled to be the speaker, well, I haven’t figured that one out yet.

The British writer, Alis Rowe, frequently writes about autism. One of her quotes that hit close to my heart: “I can be talkative and expressive when with a single person, but the more people there are around me, the less interactive and more introverted I become. Inside a group of people, I can’t contribute/function, and tend to ‘shut down’ because I find it all too overwhelming.”

My ASD is a constant companion and there are times when it slaps me right in the face. At family gatherings or other group settings, I can’t be like the others. I can’t join in on their chatter and laughter and enjoy it as they do. For me, such gatherings are draining and that isn’t going to change. The mute button will always come on.  I can ask why I have to struggle with this but everybody has something to deal with.  It isn’t so much what it is but how we cope with it.  The Lord is the One whom I turn to.  He knows all about my Billy.

I take heart in the bright side of living on the Spectrum. My passion for writing helps me to communicate with people in my own special way. It isn’t all dark on the Spectrum. Not at all. No one has it all after all. I try to remember that and appreciate what I do have going for me with Billy around.