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.

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Thorns and Blessings

It was a Saturday morning and it was one with much anticipation in the household. My Mom, brother, and I all got up earlier than usual because my brother’s daughter was dropping in. It would have been nice if it had just been her, but her bringing my brother’s 8-month-old first grandchild made it FANTASTIC! My Mom and brother had seen him once, but it was a first time for me.

If it had just been a visit between myself and my niece, I would have talked her ear off.  HA!  Even with the addition of one, the baby, it would have been okay since he can’t talk yet. In a conversation where there is more than two, I don’t talk anybody’s ears off.  I wish it wasn’t like that but my Autism is what it is. 

During the visit, I could only take so much sitting there while the others socialized. I wanted to hold the baby but I didn’t have it in me to ask. If she had handed him to me, I would have gladly held him. Maybe my niece didn’t offer him to me because she noticed my cough. It probably was for the best since I was ailing with suspected allergies but just in case I was contagious, I wouldn’t have wished my crud on anybody, especially a baby.

I took as much as I could and then retreated to my bedroom and engaged my computer. It occurred to me that I could give my grandnephew one of my collection of gadgets. It was a remote car toy. I returned to the living room and gave it to my niece explaining he might like it when he gets older.  My niece gladly received it and I was relieved about that. The sweet baby boy took a shine to it with his Mom handling the remote. 

This made me feel so much better about their visit. It was awkward for me to enjoy the visit socially, but I could contribute a gift. Ironically, I wouldn’t have had such a gift along with my herd of gadgets if I wasn’t Autistic.  I thought at the time, “Autism has both its thorns and blessings.”

Autism is a thorn in a group setting for me. It doesn’t matter how well I know or don’t know the people in the room. However, my Autism special interests/obsessions have helped me out as it did that day. I hope he will find out what his second cousins already know: their Great Aunt has the BEST toys in town!

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.

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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.

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 two 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.


In an autistic unit, the other day, I hugged a child who was having a bad day.  I whispered to myself, “I know. I’m on the spectrum too.”

My First Time to Wine and Dine

Just like everybody else, I have “firsts” in my past. A first time to walk which I don’t remember and my Mom doesn’t either. A first time to ride a bike and I’m thankful I don’t remember it since I have no doubt it was a painful experience. A first time to drive a car where the cows didn’t bother to take a hike because I was going slower than a nun driving with two rear flat tires. There was a first time of having an inkling that I was on the Autism Spectrum (AS). That was a little over two years ago. Since then, my memories of firsts have AS playing a part in them.

One that comes to mind was my first time to taste wine. One of the things that was different with most of my peers was not having had as much as a sip of alcohol. One exception was alcohol in medicine but I didn’t count that. When I was sick as a child with a horrible cough, the doctor prescribed whiskey. I’ll just say he had a hard time getting my father who was a church deacon to to go an establishment that sold alcohol. Back then, my hometown was “dry” meaning you didn’t find booze at the grocery store or anywhere else within the city limits. My parents were hoping my cough would get better without it but my cough was too stubborn.

So a lot of parental influence played a part as to why it wasn’t until my 40’s before I gave wine a taste. My first taste was at a Christmas workparty. My friend/wine mentor advised me to take the white wine for a starter instead of the red wine or the beer. At first sip, oh, my goodness! It tasted like I imagined my car’s oil would taste. Ugh!!!

My first thought was, “What in the world can my fellow man see in this horrible tasting stuff?” This was another upteenth time I felt out of step with mankind. I couldn’t imagine people liking the stuff and even using it to celebrate with. I told my friend, “I guess it kind’a grows on you like when I first tried coffee.” She nodded yes. I suspect she was working hard to hold back her laughter.

Later on at another work party I tried red wine but had the same results. I did discover liqueors at another Christmas party years later and it tasted much better. However, I don’t crave liqueur. I can take it or leave it. Mostly the latter since the price of a bottle is more than I like the drink.

I’m not tempted to order a drink when surrounded by others that do. It is my experience living on the Spectrum that I don’t keep up in step with my peers anyway. Now if I’m the only one drinking a non-alcoholic beverage in a room or table full of folks, I stand out like a sore thumb. That still isn’t a comfy feeling. The good thing is I am seldom invited to parties since I’m notorious for giving excuses to get out of them.

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.

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.

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.

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.