What You Should Not Say to Someone with an Autism Spectrum Disorder

Someone asked this question on a question/answer website.  The following are ones that came to mind…

 

Autism? Really? Well, you should fix your brain.

Get Real! You don’t walk around in circles like my neighbor’s kid.

You look so normal to me.

 Could you just be a tad introverted?

Everybody’s got something on their plate.  (That’s true but telling me that is like giving me a lukewarm, instead of a cold rag for my raging fever.  It’s lame on comfort.)

BUT you can talk!  My brother’s wife’s cousin’s sister’s kid who has autism can’t say a word.

Quite frankly, I think you use autism as an excuse to get out of getting out.

Stop being so sensitive!  (that statement will triple my sensitivity)

Why don’t you just call instead of e-mail them?

Autism is so over-diagnosed these days, don’t you think?

How can you be so sure that you are on the Spectrum?  So you are a routine stickler, rock some, talk to yourself, like to be left alone, so what?  Everyone does stuff like that.

I hope it isn’t contagious.

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What’s the difference between a pastor talking to God and a mentally ill person talking to oneself?

This was a question posted by someone on a website I frequently visit.  I felt compelled to answer it and below is my answer.

I am not a pastor but I do talk to myself and I talk to God too. There’s a difference. Just like there’s a difference between talking to my Mom vs. talking to my brother. I don’t address my brother as Mom when talking to him, for instance.  When I talk to God, I address Him as such.  When I talk to myself, I don’t feel it necessary to address myself.

In early December 2016, a 12-year-old girl caught my attention in an autism unit class where I was subbing for one of the aides. She was talking to herself in the middle of the classroom.  Observing her was the light bulb that led me to my own Autism Spectrum Disorder (ASD) diagnosis. The difference between me and the child is I know there are places and times that I should not talk to myself. I try not to do it in public but it wouldn’t be unusual, for instance, to be caught talking to myself while taking a walk in the park. I pray, too, in the park. If there were a video camera in my bedroom or whenever I am by myself, one would see a lot of me doing the self-talk. If I saw myself on camera, I would be “weird” to me too.

I can’t prove that my prayers get beyond the ceiling. When I’ve prayed, I’ve yet to hear a voice answer back. I recall one time praying for something unusual and later thinking maybe I was silly asking for it. But I didn’t take back my prayer. I was high as a kite when before the day was over, the “silly” prayer was answered. Some would say it was just luck. Just a chance occurrence.  I have no visible proof that my prayer was heard and answered from Heaven. Or, that there is even such a place to begin with. It’s a matter of faith. I suppose that’s why the word “faith” isn’t a hard word to find in the Bible.

Scoot Like No One Is Watching

I took up scooter riding during the spring of 2018.  I can understand someone thinking it is an odd sport for someone approaching 60.  It is just an addition to my long-held obsession with most any gadget that is electric or battery-operated.  I call this obsession “gadgetitis”.  I am into “nicknames” too.  I gave the nickname “Billy” to my Autism Spectrum Disorder (ASD).  An inventory of my bedroom is visible proof of my gadgetitis:  multiple computers, TVs, vacuum cleaners, etc.  Within a month or two after my scooter obsession began, I owned not one, not two, not three, not four, but five.
Scooters first came into my life on a school day subbing for a P.E. aide.  The coach put out some scooters which are, by the way, a highly popular piece of equipment with the students.  I don’t recall them being around when I was growing up back in the 1960’s.  There were roller skates back then that I fell for back in my younger days.  I mean “fell” as in landing on the floor in a painful sort of way.  A lack of gross motor skills, a common ASD trait, explained a lot of what activities I didn’t pursue as a kid.  Back to the present, since the kids were not in the gym yet, and thus no witnesses besides the coach who was really busy at the time, I plopped down on a scooter like the two pictured below.  I liked the feel of it!  And when I like something, I go way, way overboard.  There’s no middle ground for me living with my Billy.
I am having so much fun with these scooters.  The downside is in a city of 143,000 people, I haven’t seen any other folks in my age group riding a scooter.  Only a handful of young folks.  I’ve seen just a few my age riding a bicycle.  I suspect it has more to do with the sidewalk conditions of my neck of the woods.  I didn’t realize how “cracked up” my neighborhood was until I took up scooter riding.
One of my experiences worth mentioning was when I was approaching a bridge at a school park.  There was a young Mom with her two little girls.  The children were on the opposite side of the bridge from their Mom.  The youngest girl, probably two or three, heard me coming and she hurriedly scooted over to the other side of the bridge to literally hide behind her Mom’s skirt.  Her Mom smiled as I scooted by.  A wise little girl!  If her Mom had known my motor skill history, she would have skedaddled with girls in hand.
Another time when I was out with Seggie (the Segway Mini-Pro) at a park, a guy walking by saw me taking Seggie out of the back of my car.  He asked, “Are you going to ride that thing?”  Since I’m not quick on my feet with a good comeback answer, I just said with my Texas accent “Yeah.”  But thinking about it later, I could have come up with another answer such as “No, I’m going to take it for a walk.”
Scooting is a sport in itself.  There are do’s and don’t and one too many of them I have learned the hard way.  Just when I am overconfident, I take a fall and get a good dose of humility.
Once after a fall, I went out with my pink scooter I affectionately call “Pinkie”.  There weren’t any kids around but a few adults taking a walk.  They were so gracious to give me the right of way when I passed by.  Maybe they were nervous at seeing a gray-haired woman on a scooter with an arm brace.  If they had noticed the word in bold letters on my blue t-shirt, they would have had a hint as to why I was on a scooter that is made with “millennials” in mind.  The word:  AUTISM.  Below: “AWARENESS.”
When I got home, I told my Mom the story.  She said, “You’re something else.”  I’ll agree with her on that.  Not only me but all my fellow travelers on the Spectrum.  My main reason for writing this blog is to say that those of us with ASD are not exempt from having fun.
Finally, my best advice for my fellow scooters is when you feel an itch, like on your face, it is best to stop and take care of the itch instead of itching while on the scooter with the motor running.

Pros and Cons of ASD

My personal list of what’s good and not so good of having an Autism Spectrum Disorder (ASD)

Disadvantages

  • Hearing someone say “But you seem so normal to me.”
  • Sitting in an audience with no graceful exit out
  • Can’t focus long enough to read a page without my mind drifting off thinking about anything and everything other than what is on the page
  • The frustration and panic of being given a string of verbal instructions — “draw me a picture, will ya?”
  • Desperately wanting time alone but not getting it soon enough to avert a meltdown.
  • Boredom
  • Social misfit

 

But don’t forget those awesome advantages:

  • Finding THE skill that I can master as if I was born to do it
  • Creative and open-minded
  • Detail-oriented
  • Dependable (a clear list of written instructions, rules, schedules are welcomed)
  • Organized to a tee

An engineer gave his pro and con of ASD in a nutshell:  High IQ and social ineptness.  It is a trade-off. Being an engineer is not too bad… 🙂

Well, being a substitute teacher’s aide where I get to hang out with many like myself is not too bad either.

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.

 

 

 

 

 

 

 

 

 

 

 

 

Some Humor with my Autism Spectrum Disorder (ASD)

It’s easy for me to write about ASD.  Just ask me a question about it and see how much I can talk about it without tending to a nature call.

Just because I don’t make a public display of my meltdown doesn’t mean I don’t have one. If I did show them, I’d fear a straight-jacket wouldn’t be just something I imagined wearing.

When do I feel like I’m the odd one, the spare tire, the round hole in a square peg?  A group setting is all it takes.

I have no problem listening to my own music at high volume, but I can’t stand to hear my own breathing with my headphone on.

Do great minds often think ALONE?  I’d like to think so.

If the only social interaction I’ve had in one day is a brief conversation with a cashier, it’s fine by me!

I can be spontaneous but not when it is someone else’s spontaneous notion.

My favorite spot in a room is any one of its four corners.

I am utterly grateful and indebted to the inventor of e-mail.

 

 

 

 

 

 

The Grass Doesn’t Grow Under My Watch

The above picture is that of my backyard.  Although I have no fear of being cited by the City for the grass being too high, I also am in no danger of receiving glowing compliments of having the greenest lawn in my neck of the woods.

It actually is my Mom’s backyard.  She has relinquished custodial care of it to me; however, the front yard is under my younger brother’s care.  His idea of when a yard needs mowing is absolutely counter to mine.  My Mom has to “edge” my brother to mow when it has reached a height beyond her comfort level.  He uses a lawn mower to do the job.  I would, too, but I don’t have the arm strength to turn the mower on, but the weedeater has a push button and off it goes.

I have an Autism Spectrum Disorder (ASD) more commonly known as Asperger’s Syndrome (AS).  My explanation for the backyard not having a chance to sprout its blades is an ASD obsession.  I’m obsessed with gadgets and my weedeater falls under that category.

I am writing this while on summer break from school while the kids are out.  I’m on vacation but my weedeater is not!  The backyard has gotten a daily haircut since school let out.  Even before school let out, I often had a weed-eating date to recharge my batteries after a school day.  Giving the weeds a whack is therapeutic in a very odd sort of way.  The above picture is proof of that.

There is also the alley behind our house.  It is under my jurisdiction too.  My weedeater and I visit the alley once a week.  My section of the alley way looks like a piece of desert in the midst of the Everglades.  I’m just saying some of my neighbors seem content with tall weeds behind their backyard fences.

 

 

 

 

 

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.

All in a Sub Day’s Work

I have the pleasure of being a substitute teacher’s aide in the school district where I was taught to read, write, add, subtract, and other such things.  I was writing this at the end of another school year.  It was hard to tell just who was more ready for the bell to ring for the last time of the school year – the grown-ups or the pint-sized ones.
Play Day is held by the schools around Memorial Day holiday.  It is usually an all-day event unless there’s interference such as rainfall or three-digit temperatures.
Several schools had their Play Day on the Friday after Memorial Day.  One of the schools did not have their best Play Day compared to years past.  The bounce houses were a no-show.  That’s like all the roller coasters at a park like Six Flags or Disney being out of order.  The company couldn’t deliver them on time since they overbooked and didn’t have enough workers to carry out all their obligations that day.  Just an example of the supply not equaling the demand.
I was at another Play Day that Friday.  I was subbing in a special ed class for a teacher who I consider one of my dearest friends.  She had a story to tell on one of her students who has a “stubborn streak”.  You won’t find this term in a medical dictionary, but I’ve heard teachers use that term.  Now stubbornness is a trait that anyone on the planet can have.  It’s just this youngster has maximum strength stubbornness.  Maybe it is worse of late because he’s approaching the pre-teen age.
The teacher escorted her student to the water slide.  He made it to the top and what did he do?  He just sat at the top and wouldn’t budge so much as an inch!  His teacher shouted and pleaded for him to slide down.  NOPE!  She told the other kids to go around him and slide down.  Before she lost her voice, she told the high school boys who were helping out to grab his legs and pull him down.  This took more than one boy since the student is a growing boy big-sized for his age.
Image result for school water slides
In the back of her mind, she was hoping there wasn’t a parent videotaping this on their cellphone commanding teenagers to pull a kid down by his legs.  Finally, he came sliding face down all the way.  He looks up with a smile on his face, spitting water right in his teacher’s face.
I did not witness this myself.  The teacher told me and one of her two aides about it later.  She was laughing as she told it.  I doubt it was funny at the time it happened though, especially the spit part.
The following week, the last week of school for me, I was subbing for a P.E. aide.  When one of the older classes was lined up to leave the gym and head back to their classroom, a boy raised his hand and I went over to see what in tarnation he wanted.  I had him repeat it four times since I couldn’t understand what in tarnation he was asking me.  (One of my autism traits is verbal communication.  It isn’t so much hearing that I ask someone to repeat something, but more about giving me time to process what I am hearing).  He finally spelled the word “r-i-g-h-t” before I realized he was asking me, “You are a girl, RIGHT?”  I found out he and a female classmate had been debating about whether I was a boy or girl.  I told the girl, making direct eye contact which I don’t often do, that she guessed wrong.
I have been asked this before and it won’t be the last time.  I assume my short haircut is responsible for this question.  I like my hair short so I can spend less time with the hairbrush that I am sensitive to.  This does make me wonder what else the students say about me in their chit-chats.  Some things I am better off being in the dark about and this is definitely one of them.

Dyspraxia and Autism Spectrum Disorder (ASD)

According to the United Kingdom’s Dyspraxia Foundation:

Although Dyspraxia may occur in isolation, it frequently coexists with other conditions such as Aspergers Syndrome, Attention Deficit Hyperactive Disorder (ADHD), Dyslexia, language disorders and social, emotional and behavioural impairments.

Those of us who have an Autism Spectrum Disorder (ASD) have a marked difficulty with social relationships, social communication/language skills and imagination. These difficulties are often accompanied by repetitive patterns of behaviour and interests. We who have Asperger’s Syndrome (AS), a subtype of Autism, are at the higher end of the autism spectrum and have difficulty with the non-verbal aspects of social communication such as gesture and facial expression. We also have difficulty adjusting our language and behavior to different social situations.

Some of us struggle with motor skills.  In theory a formal diagnosis of dyspraxia should not be made if a child has a “pervasive developmental disorder” (including autism). However in reality children are sometimes given both diagnoses, especially if their motor coordination is significantly affected. Where the autism is severe this should be given as the main diagnosis.

Most with AS and High-Functioning Autism (HFA) have a history of delayed acquisition of motor skills (e.g., hand writing, pedaling a bike, tying shoe laces, catching a ball, opening jars, climbing monkey-bars, etc.), which is called “motor clumsiness.” This statement brings back many a childhood memory of learning later than my peers of how to tie my shoes. When I finally did, it was a crowning achievement and goodbye to just wearing shoes with no ties.  As for monkey bars, I was never caught near them.  Now that I am approaching the age of 60, I wouldn’t enter a contest of being the quickest in “opening jars” since my odds of winning would be slim and embarrassment high!

Dyspraxia is a disorder that affects motor skill development. AS and HFA children with Dyspraxia have trouble planning and completing fine motor tasks. This can vary from simple motor tasks (e.g., waving goodbye) to more complex tasks (e.g., brushing teeth). Dyspraxia is a lifelong disorder, and its severity and symptoms can vary from child to child. Also, it can affect individuals differently at different stages of life. Dyspraxia can affect many basic functions required for daily living, and is often broken down into the following categories:

  • Constructional Dyspraxia (i.e., establishing spatial relationships, being able to accurately position or move objects from one place to another)
  • Ideational Dyspraxia (i.e., multi-step tasks such as brushing teeth, making a bed, putting clothes on in order, buttoning and buckling)
  • Ideomotor Dyspraxia (i.e., completing single-step motor tasks like combing hair and waving goodbye)
  • Oromotor Dyspraxia (i.e., coordinating the muscle movements needed to pronounce words)

Dyspraxia often exists along with learning disabilities (e.g., dyslexia, dyscalculia, ADHD, and other conditions that impact learning). Weaknesses in comprehension, information processing and listening can contribute to the difficulties experienced by children with Dyspraxia. These young people may also have low self-esteem, depression and other emotional and behavioral issues.

AS and HFA kids with Dyspraxia may experience several difficulties.

Younger kids have problems with:

  • Being sensitive to touch (e.g., being irritated by clothing on skin, hair brushing, nail-cutting, or teeth-brushing)
  • Bumping into things
  • Establishing left- or right- handedness
  • Learning to walk, jump, hop, skip and throw or catch a ball
  • Moving the eyes—instead, moving the whole head
  • Pronouncing words and being understood

School-aged kids have problems with:

  • Doing activities that require fine motor skills (e.g., holding a pencil, buttoning, cutting with scissors)
  • Phobias and obsessive behavior
  • Playing sports, riding a bike and other activities requiring coordination
  • Poor pencil grip and letter formation and slow handwriting
  • Sensing direction
  • Speaking at a normal rate or in way that can be easily understood

Teens have problems with:

  • Clumsiness
  • Cooking or other household chores
  • Driving
  • Over- or under- sensitivity to light, touch, space, taste, or smells
  • Personal grooming and other self-help activities
  • Speech control (i.e., volume, pitch, articulation)
  • Writing and typing

Early identification and intervention can greatly help an AS or HFA child with Dyspraxia. Depending on the severity of the disorder, therapy from occupational, speech and physical therapists can improve the child’s ability to function and succeed independently.