The Spectrum Can Be a Lonely Road

After learning I had been living on the Spectrum at the age of 58, I finally had an explanation for why I like people but I don’t like being around them much. Why I’d like to make friends with someone who doesn’t like making new friends. Weird, I know.

When a social function is canceled, I respond with “That’s too bad!” and then I CELEBRATE!! So if not “having a life” is misery, then I’m all for misery.

I am a substitute for teacher’s aides and so I sometimes work with kids who are on the Spectrum too and those who have other challenges. I do see their loneliness. I was once asked by a young girl if she was bad for not wanting to be friends with a boy who had Autism. His quirky behavior was as she put it, “driving her bonkers”. He’d get in her face, follow her around, and spin in circles on the floor.

I answered with first stating I didn’t think she was a bad person. I advised her not to abandon him completely. She didn’t have to be his best buddy but if she could manage, she shouldn’t ignore him completely. I asked her if she knew what it is to be ignored and she admitted it did hurt like heck.

I gave her a few examples of those children, (how shall I put this nicely), put my patience to task.

I told her about a boy on the Spectrum who does not give his voice a break. I often wonder what keeps him from getting laryngitis. My best coping mechanism is a sense of humor about it. I don’t mean laughing at him; just keeping my sense of humor to ease his chatter on my nerves.

The girl with the question was amused at my stories and I told her that I laugh at my own quirky behavior all the time. It beats crying about it. I think I gave her some food for thought. I hope she decided not to abandon the boy. After all, Autism can be a lonely road for some.

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.