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.


Where Did She Go?

I once met a 5 year old autistic student going on 35. She reminded me of a truth about Autism: If you’ve met one person with Autism, you’ve only met one person.

This child made such an impression on me that I wrote about her previously. In that blog, I described this child as being one who had not met a stranger. When I would walk in, she would make a beeline towards me as if she saw me every school day.

The thing that was so unforgettable about her was her repetitive behavior of asking people their name over and over again. I was advised by her then teacher not to answer every single time she asked. I didn’t but my silence didn’t dissuade her from asking every half hour.

Whenever I took her to the gym or lunchroom, there wasn’t a teacher who passed by us that she didn’t go over and say hello and give a quick hug. I remember asking the teacher if the child knew every teacher on campus and she said with a smile and a wink, “She’s working on it.”

One of my most memorable moments as a substitute teacher’s aide was with this student. I still laugh recalling the time when she repeatedly asked not only my name but my mother’s name, my brother’s name, etc.  Finally, I turned the tables on her and asked her what was her name.  Her answer: “NOYB”.  I said what???  She said, “None Of Your Business.”  She sure got me that time!

Recently I saw her after not having seen her for a year or two. She was in first grade and the school year was close to being over. She is out of special education and in with the general crowd. Evidently it was determined she was ready to make the transition which is no small achievement. This transition is seen as a positive step.

On that day, I was subbing for the P.E. coach’s sidekick. It took a while for me to recognize her but that was because she is growing like any other child. Her having done some growing wasn’t the only thing that had changed.

In the 45 minutes I was with her, I didn’t see her going around asking for names or any question. She sat in her spot on the gym floor without complaint. On the playground, she played by herself on the monkey bars. I went up to her and said hello. All I got was a blank stare.

My blog is not intended to be my scathing criticism of the education system. Sometimes I write my observations that have either inspired me or on the other end, haunt me. This one haunted me and I am still haunted by seeing this child as she is today vs. what she used to be.

I wasn’t surprised she was transferred out of special education. She was book smart back in kindergarten and hopefully she’s just as much so in the first grade. She’s not jumping around in class and that’s a positive thing. She doesn’t stick out like a sore thumb in a gym class attended by the entire first grade. If her blending in with her peers was one of the goals, it appeared to me she reached it.

What haunted me was missing the girl I knew from a year ago. I admit I got tired of her asking my name, but it would have delighted me if she had asked me once that day. Or, at least said “hello” or something. I can only speculate as to why she wasn’t the inquisitive child she used to be. Maybe medication. Maybe having an off-day or maybe pre-occupied.

Or, maybe she learned to “pass” like I did when I was around her age so long ago.

I’ll end with a question that I have no answer yet: The extroverted little girl who hadn’t met a stranger, where did she go?

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I hope she isn’t one of those in limbo.

Can Asperger Symptoms Worsen over Time?

This is a good question which I have wondered about. I was self-diagnosed at 58 years of age two years ago. Some, not all, of my traits seems to be increasing. Such as my obsession with collecting electronic gadgets (toys, scooters, vacuums, etc.) is getting stronger. My Amazon account and number of power surges to maintain my collection is proof of that.

A psychologist/writer I follow is Dr. Kenneth Roberson, in California who has 30 years experience of working with Asperger patients. He wrote an article on this very question. His simple answer was “no”. He states that Asperger’s is not like heart disease or diabetes or similar physical conditions that can deteriorate over time. People are born with Asperger’s, and while the condition itself can change with time and often does, the underlying causes of Asperger’s do not worsen.

Roberson cites Tony Attwood, the internationally recognized expert on Asperger’s, that as the adult develops more coping skills and is better able to manage the demands of being around people, the same symptoms become less noticeable. Attwood states something that I think explains why some of my symptoms are more prominent as I have entered my 60s. It isn’t because the underlying condition has declined but because I care less about how my behavior affects others.

The simple answer to this question, according to some experts, is the symptoms of Asperger’s can get worse but the condition itself doesn’t.

The Unstated

I open the front door on my way outside. My friend who is waiting for me to move my car from behind hers says “John is here.” Well, I could see that John was walking towards the porch. I thought it strange my friend was telling me that since I wasn’t blind. But I didn’t say something she might have been offended by such as “So????”.

After locking the door behind me, she said, “You didn’t have to lock the door!” Ooops! Just another time I didn’t get the “unsaid” part of the message. She wasn’t announcing his arrival but was telling me I didn’t need to lock the door since he was coming inside. If she had stated what she didn’t say, I would have gotten the memo, so to speak. Then, she asked in a teasing sort of way, “What’s wrong with your mind?”

Nothin’ except my brain isn’t wired like my neurotypical friends. I’m not angry with my friends since there are times I wonder what’s wrong with their “thinkers”.

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!

We Write What We Live

At least, once a month, if not more, I submit a blog post about my “Billy” on this blog website.  Billy is my nickname for my Autism Spectrum Disorder (ASD).

A day after posting a blog, I received an e-mail of someone who had read my blog and liked it enough to let me know he did. I pulled up the links to three of his blog posts. One of them did a number on my heart. The blog was about his living an unwanted role; that of a widower raising his son without the companion whom he thought he would grow old with. 

I have no clue as to what it is like being married much less being a widow.  Nor a clue as to raising a child, much less doing it solo.  But reading his blog gave me an insight, a peek if you will, into what it is like.  It’s harder than I imagined.

He’s a young adult and I’m a senior citizen. He lives on a different continent. He’s a widower and someone’s dad.  I’m a single, never-married, with no children.

However, we do have something in common. Something I suspect is as important to him as it is to me. We write about what we live.

Perhaps it is therapeutic for him as it is for me. I don’t always write about “Billy”. Sometimes I write about a hobby or my religious beliefs. But it’s different writing about “Billy” because there is no choice about him and his impact on my day-to-day life. There are experts who write about the topics of autism, grief, and single parenting. Experts who have spent their careers dedicated to assisting those who live the topic. But studying it isn’t quite the same as living it.

I can’t know what it is to live his life, but I got a glimpse. His writing about what he is living gave me an appreciation for the grieving spouse who finds it so hard just to put one step in front of the other. I hope my writing about my “Billy” gives whoever reads my blogs a glimpse too into living on the Spectrum.

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.

A Sense of Humor Goes a Long Way

I am a substitute teacher’s assistant which means I fill in when an assistant is absent for a whole host of reasons. I suspect one of those reasons might be to take a day off for tending to their stressed-out nerves. One of many advantages of being a part-time substitute is I can take a few days off between assignments to avoid nervous breakdown country.

This job has given me an appreciation for school staffs. I didn’t give my own teachers enough credit for putting up with me and my peers back in the 60 and 70s.

One of my assignments that I have added to my “war stories chest” was about a male student who was “all hands”.  This was his most used body part!  While trying to doing a one-on-one assignment with him, he kept putting his hands on my face, neck, and once attempted to go further south.  This wasn’t a surprise since I had been in his class a few months back.  That time he repeatedly touched me in my privates.  I wasn’t upset with him since he’s only 5-years-old.  If he were older, well, now that would be an entirely different story. HA! 

I escorted him to gym class with another student who was one of the two girls in the class.  The rest were all boys.  I didn’t have to watch the girl and it’s a good thing she didn’t need as much watching because the boy couldn’t be left alone.  He would chase after other kids to get his hands on one.  It didn’t help that some kids would come up to him knowing full well he would chase after them. 

One of my better assignments was an afternoon subbing for a kindergarten aide.  I seldom EVER do kinder, but I thought I could manage a half-day.  I was surprised when this assignment was a four star one.  The reason had everything to do with my “Billy” (autism).  Billy isn’t entirely a thorn in my side. 

On the bright side, I credit Billy with my attention to detail, my craze with organizing things, putting things in order alphabetically, numerically, or some other system.  Well, in this assignment, I went from each of the kinder classes and did whatever the teacher needed.  In all cases, it was to work on paperwork such as stuffing kids’ folders.  Such work is right up Billy’s alley!

Not that I had to, but I finished the folders with putting them in numerical order knowing that they wouldn’t be kept that way.  But as long as they were under my control, they would be in ORDER!  I was on cloud nine doing this kind of work that other folks find BORING!  It is when I have to do heavy-duty social interacting with the kids that will wear me out … especially KINDER with 20-something of ’em per class.

Oh ye of little faith

On a Martin Luther Kings holiday, I came across one of King’s quotes. This one I unpacked in my memory bank since there are times when I’m running low on faith. These words are good for filling up with some “faith” fuel:


This short quote is an easy one to remember. I wish I could say that it was as easy to live this quote. I’m fairly good at it when things are going smooth-like. Moments when I’ve got a good spring in my step or I’m residing at the moment on cloud nine. But I confess I have plenty of room for improvement at living the King quote when anxious thoughts of what’s on my plate are popping up in my mind.

Jesus’s disciples had their own struggles with faith even though they were in the company of Jesus. In Matthew 8:26, Jesus tells his disciples,
And he saith unto them, Why are ye fearful, O ye of little faith? Then he arose, and rebuked the winds and the sea; and there was a great calm.”

This occurred during a storm when the water was so high that it was coming into their boat. I can’t blame the disciples for being terrified even though they had Jesus with them. I’ve been through “life” storms like everybody else. Despite my having a flood of memories of storms the Lord didn’t let me drown, my faith isn’t always at full strength when a storm comes through.

I relate to the disciples. It isn’t easy for me to take my eyes off on what turbulence I see and keep my eyes on the One I can’t see. Life affords me plenty of practice though. There always seem to be a storm brewing somewhere.

Growing Up on the Spectrum

She’s the only girl in her Autism Special Education class.  She’s in 4th grade as of this writing.  I’ve worked as a substitute teacher’s aide in classes she’s attended since she was in pre-school.  I’ve met all her teachers and without exception they have described her as being very smart.  I could see that myself from watching her do class assignments.  She was more often than not the student who knew the answer to the teacher’s question before anyone else. 
I thought some years back that she had the potential to be one of the ones who would transfer to general education classes.  Well, the transfer isn’t complete at this writing but she is spending some of her school day in general ed.  Her teacher is hopeful it will increase to full-time.  She is book-smart, but her behavior and social skills needs a bit more work.  
I empathize with this student as I do others in her class.  One doesn’t outgrow Autism.  I’m 60 and my social skills could still use some work.  Such as I enjoy being a substitute aide but such things as deciphering teacher’s verbal instructions is a constant challenge for me.  
It is a common Autism trait to be “brutally honest”.  This 4th grader  definitely has this trait.  Or, you could say that tact is not her thing. Maybe she will learn it as she gets older and maybe not.
For instance, on one occasion, the other aide and I were sitting at the table with her.   She told the aide whom I guessing is in her 40’s, “You are a little old.”  Then, she looked at me and said, “You are…”.  I interrupted her with wave of hand.  I knew what was coming and stopped her in mid-drift from saying “very” old.  That’s the one time I caught her.  In other words, most times I didn’t dodge her brutally honest bullet.
Kids, you gotta love ’em, whether they are growing on the Spectrum or not.