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.

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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.

Single-Tasked

I was recently reminded of my not being a multi-tasked person.  I was hanging out at an elementary school gym subbing for a coach’s sidekick.  I had been with this coach one time before over a year ago.  She remembered me which was a nice surprise.  After that day, I know she will NOT forget me even if we don’t see each other for 2 or more years.  I am probably the one and only sub who blew up a soccer ball.
At least I give myself credit for putting air in her hundred or so other balls without blowing any of them up.  But it only takes blowing up ONE for one not to live that one down no matter how many balls one aired up correctly.
Okay, here was how I did it.  If you ever use an air pump for airing balls or tires, you might want to take notes.
After I stuck the pin in the soccer ball and the pump was blowing air into it, I got a phone call from an aide at another school.  This call was too important to ignore it.  An aide might be needing a sub and that’s how I earn money.  So I stopped everything to take the call. I was so focused on the call that it didn’t occur to me to turn the air pump off.
It is not uncommon for those who have an autism spectrum disorder (ASD) to prefer one task at a time.  Two or more is too many.  A juggler I am not.  Sometimes I am in a situation that calls for tending to more than one thing and when I am, I feel like I am under the gun, far from the comfort zone.
After the call, I returned to my seat and without a moment’s hesitation, I pulled the pin out.

BOOM

 
I didn’t hit the floor, but some of the students did.  They thought they were under the gun, literally!  Instead of having a panic attack, I was cool, calm, and still collected.  My first thought was, “Ooops! I did it again.”  Common sense often alludes me.
The soccer ball will never see a soccer field again.  I sealed its fate of the dumpster.
I thank the Lord that the shrapnel did not hit me in the face.  I really dodged the bullet.  It did take a while for my ears to stop ringing though.  The coach reassured the children we were not under attack.  I was also thankful the coach was understanding about it.  She said the main thing was that I was okay.  Well, except for my ears ringing and my utter embarrassment, I was okay.

Can autism make you appear less intelligent?

I ask you to picture a long drawn line representing the Autism Spectrum (AS). On one end are those who have yet to say their first word, whether they be 6 years old or 46. Those who can’t take care of themselves. They have learning disabilities as well as social challenges.

My day job is subbing as a teacher’s aide. I’m familiar with autism units. One of the students I’ve known since he was in Pre-K and he is now 7 years old. He is on the lower end of the AS long line. He has never uttered a single word. He constantly flaps with his hands, chews on his fingers, and can’t sit still for more than three minutes at max. But he is quite skilled in outsmarting the adults in the room when one is chasing after him in the classroom.

On the other end of this long line are like another one of the AS school students I’ve met. This student can tell me what day of the week Christmas of 2025 will be on. Some subjects are a challenge to him, but he is proficient beyond his peers in his areas of expertise.

If you met one person with Autism, you’ve met just one person.

What are some signs a person with Autism Spectrum Disorder shows during a conversation?

I take in what someone says to me in slower motion.  My response will depend on how much time I have to process the input.  The less time, the odds increase of a response I’ll kick myself about later.  To give me a few more seconds for my brain to pop up a response, I often will ask for a repeat even though I may have heard what was said the first time.

I’m giving instructions like this:  “It’s on the third shelf from the top on the left side of the closet next to the package of red, yellow, and green folders. You can’t miss it.” You wanna bet? Just watch me!

I love hardball conversations about any one of my limited interests such as politics. If talking to someone whose view I don’t agree with, my mute button will come on.  If the other person shares my viewpoint, he or she will have a hard time getting a word in edgewise.

Rehearsing conversations with others in my mind is common practice.  The conversations either never happen or never come out the way I rehearsed.

The best part of a get-together of three or more is when someone says “I gotta be going”.  I call that R-E-L-I-E-F.

I came across something someone wrote: The older I get, the more I understand it’s okay to live a life others don’t understand. I relate to that quote. I’m working on being content with my companion that never sleeps — ASD. I might as well since it is here to stay.

I crave more clarification or specific information.  What’s unspoken that one assumes I know is mistaken.

When I say I want or need to leave, I am NOT kidding!

 

Is Aspergers in females seriously undetectable?

Since I have Asperger’s and I am a female, I know firsthand how easy it was for me to be in the dark about it for most of my life.  Even if I were growing up in the 2010’s when Asperger’s and Autism aren’t as foreign words as they were back in the 1960s, I still think I would fall under the radar.

Asperger’s in females is not undetectable, but it can be easily undetected. My opinion from being a female with Asperger’s and working in elementary school Autism units, females who have Asperger’s are more likely not to be detected as their male counterparts.

When I started working as a substitute teacher’s aide, it didn’t take me long to realize that the overwhelming majority of students in these classes are male. Their behaviors are usually more visible than the few female students there are.

As to the question of why are men more likely than women to have autistic traits, or receive a diagnosis of autism, Professor Simon Baron-Cohen, director of the Autism Research Centre who, along with PhD student Emily Ruzich, led the Cambridge/Channel 4 study. They found there’s a lot of research showing that testosterone changes brain development.

Males on average produce more testosterone than females, even when in the womb, and the data shows that children with autism on average have higher levels of the hormone than typically developing kids.

This backs up a 2009 study that looked into the prenatal testosterone levels of typical four-year-olds. “The higher the child’s prenatal testosterone, the more autistic traits they had,” says Professor Baron-Cohen.

These findings suggest the critical factor may be hormone levels rather than gender and could be pivotal to further understand the higher rates of autism diagnosis in men. But, as Professor Baron-Cohen points out, “It’s only one piece of the puzzle.” He adds: “The nature of science means one new finding opens up a hundred new questions.”

Wendy Lawson, author of “Build Your Own Life: A Self-Help Guide For Individuals With Asperger Syndrome” and a self-described autistic woman, believes girls on the spectrum may be underdiagnosed because if they have obsessive interests (often a feature of spectrum disorders), these are more likely to be socially acceptable than the obsessions of boys with autism. Girls, she says, might get into reading or animals, which seem normal, “so people don’t pick up on our social difficulties.”

Jennifer McIlwee Myers, who has Asperger’s and is the author of “How to Teach Life Skills to Kids with Autism or Asperger’s,” concurs. She says boys on the spectrum are more likely to respond to their difficulties with anger and aggression, while girls are more likely to “deal with issues quietly,” cultivating extreme “niceness” and imitating other girls’ behavior. Boys who have the vision problems that sometimes go with Autism Spectrum Disorders may hit other boys, she explains, while girls might instead cling to other girls. And a boy who attacks other kids is going to get intervention a lot faster than a girl who cries quietly every day. Myers says there are “a lot of invisible girls” who are Autistic but never get help because nobody notices.

I personally didn’t realize how I try to act like other people until I learned I was on the Spectrum. I act “normal” to avoid making people mad and not being singled out as different. When I have been caught in my quirky behavior, the odd stares peeled at me are immensely painful.  Females on the Autism Spectrum may just be better at imitating neurotypicals than our male counterparts. And that imitation makes us invisible.

My Ideal Vacation with my Constant Companion

I guess dog-sitting for family members does not sound like an ideal vacation, but that’s how I spent mine during the summer of ’18.  I enjoyed sweet solitude on a farm in the hills of Oklahoma with just me, two dogs, three donkeys, a herd of cows, and other assorted country critters.  Being alone out in the country was the ideal vacation for me whose constant companion is Autism Spectrum Disorder (ASD).

The vacation covered two separate trips.  One was a preview of about a week before the two-full week trip a few weeks later.   I had a BLAST on both trips after I got over the initial ANXIETY of being in different surroundings and a change in routine.  It took about 24 hours after my arrival for the arrival of calm.  A change in routine, no matter how much preparation beforehand, even if the destination is a vacation spot, raises my anxiety level.  There’s not much I can do about that other than telling myself it will pass.  It always does.

As for the dogs, Blu and Bailey, they were jumping up and down, wiggling their tales; that is when their adult parents came home … or, maybe more so when I drove off.  Just kidding.

I was asked more than once by inquiring and concerned folks before I left, “Aren’t you going to get LONELY in the country all by YOURSELF?”  If you ask me, that’s one of those common neurotypicals (NT) questions.  You see, for me, someone with ASD, being by myself on a vacation is equivalent to someone else’s ideal vacation of being on a cruise ship surrounded by others engaging in social activities.  No, I have never been on a cruise, but the thought of being on the ocean with a host of strangers gives me the chills in a frightening sort of way.  Perish the thought!

I didn’t think of myself as alone the entire time.  I did venture into town and had interaction with store clerks.  That was sufficient social interaction.

I had the dogs but they weren’t much company.  I don’t want to give the impression I don’t like dogs.  If I didn’t, I wouldn’t have signed up for dog-sitting duty.  I have wonderful childhood memories of having a dog as I was growing up.  The pet was my playmate and comforter.  I would have a dog of my own but I live with my Mom who likes dogs but not enough to own one.  I got along just fine with the dogs, but I knew they missed my brother and sister-in-law.

I had for comfort in my change of environment and routine my electronic gadgets.  I consider them my “comfort” necessities:  my computer, my smartphone, my voice-activated gadget (Amazon Echo), my two Segway electronic scooters, and my hoverboard.

Scooter riding was one ingredient that added excitement during my dogsitting tour of duty.  I had plenty of acres to scoot over.  I could scoot to my utter delight without worry about pedestrians or traffic.  Scooter riding is part of my daily routine and unless it is pouring down rain, lightning striking, thunder rolling, snow falling, or temps in the teens, I will go for a scooter ride.

Back in my suburban home, I ride my scooters at the parks.  Along with the enjoyment I get from riding them, I get UNwanted attention.  Sometimes the stops and stares are too much for my nerves.  Well, even though I was out in the country, I got more stares than I ever had before while I was riding my Segway scooter on the gravel road to the mailbox.  There were so many pairs of eyes that I didn’t bother to count.  Maybe my being a stranger in the area was one reason, but I reckon, too, they had never seen a Seggie before.  It didn’t bother me though.  I just paid the cows no mind.

All in all, it was one of my BEST vacations.  The main ingredient was time to myself.  It recharged my batteries.  Even if I had been dog-sitting at a beach house, mountain cabin, or a house in suburbia, it would still have been the ideal vacation for me and my ASD.

Now it wasn’t totally perfect but then what vacations are?  In my case, there were a few things I didn’t care for during my time in the country.  Namely flies, grasshoppers, and spurs.  They were far more attached to me than I was to them.