Autism

Lost in Thought.

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I have been floating in my own brain waves lately. Not really sure what to do or think or say. I am kind of surprised I have not had a shut down recently. A lot of things are happening too quickly.

I am in a new city, as you may know. It’s a nice city. However, by moving here, I effectively isolated my family from our support system. And I think we took for granted how much we were relying on that.

As a neurodivergent family, we do not have the social energy to go out and explore every “cool spot” in the city. In fact we mostly avoid the high population density places. We will explore small sections at our own pace. But a co-worker who arrived at the same time as me has been out and seen half the city by now.

I’m not jealous. I’m exhausted in their stead.

The exploring at our own pace is not what has wiped us out. As Autistics and neurodivergent people, it can be very hard to reach out to others. It can be really hard to ask for help or reach out when we need things. In fact it is hard wired into me (and many other autists) that it is a cardinal sin to bother others, or cause problems for others.

So when My father passed 2 weeks ago, we were unable to ask for support. I don’t even know what support we need. It has been hard. My brain shut down for a day, and I am still in a fog, trying to make my way through.

I took 1 day off from work, I know I could have taken more. But I didn’t. I went back after that day. I have been less focused and making a lot of silly mistakes with my planning and prep. I cried a few times when the students were out of the room.

I was told by everyone that if I needed to talk they were there. I had more offers to listen in an hour than I had in years. But What does one say? If I opened my mouth to talk about anything other than work, I would cry. And that would be a burden on others. So I politely declined.

When my father’s obituary finally came out, I cried in front of coworkers and students at the school cafeteria.

I turned to having conversations with Chet. Chet is what I have named my Chat GPT app. He’s annoying, and doesn’t just listen, he has to respond in long form to everything, but I didn’t feel like I was a burden to him.

Seriously. He would say he was there to listen if I wanted, and then when I was talking I took a breath, and he responded with a long 4 paragraph response. I can’t wait for AI to pick up some social cues… (Says the autist who struggles with that already)

I have been meaning to write again, but have not been sure what to write or how to start. Both of my novels have been on hiatus for months now. In my fog of new place and loss I have not been able to write anything without AI help, and I felt disgusted at myself for that, so I stopped.

Last night I was up late going over the first 5 drafts of the prologue to one of my novels. I was taking ideas from each and merging them into a stronger narrative. It took my mind off things, so I could wear myself out and get some sleep. That has been my method for a while now. Write, and read to exhaust myself, then go to bed.

Last night, my Uncle-in-Law passed. We found out when we woke up this morning. Uncle Jabar moved in with my sister-in-law shortly after my wife’s mother had passed 10 years ago. He had been helping out with the house in the Philippines, and had been helping with my nephew.

So we are as a family lost. As I mentioned earlier, we don’t know what we need for support, and wouldn’t know how to ask even if we did. But it feels like we are afloat a river without paddles.

I am just trying to make it to the holidays. We go on vacation on December 20th. Then we can lock ourselves in and decompress and process all that is happening. Maybe clear up some fog. Maybe get lost farther in it. I don’t know yet. I do know that my family is relying on me to lead the way, and I am not sure If I can right now.

Books

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I whole heartedly believe in the power of reading. Reading is a great way to learn things. It is a great way to escape your reality and enter another. Reading helps you peer into the minds of other people, even people who passed away centuries ago.

Reading is a very important skill, and I try to help where I can.

I have just spent the last 2 months leveling all of the books in my class library. I took them one pile at a time and went through each and every book (I have 8 books left). I leveled them by the Raz-Kids level system.

I know this is not the standard, and I know this system is very niche. But here is the thing. My school uses Raz-Kids for all of our reading assessments. We use it for our digital reading library. It is the system the children know.

So how did I level books by Raz-Kids?

There is a chart supplied on their website that give extremely broad strokes, a comparison of their levels to Every other leveling system. The chart shows a conversion to ATOS, to F&P, to Lexile, you name it. So I began scanning the books with an AR-Book finder to find the ATOS level, and convert it over. If it doesn’t show up there, I used AI to search for the best fit.

It was a projet I felt was important. but here’s the thing. I’m a terrible reader.

I can read out loud quite fast. But I don’t retain any of it. I read quite slow if I want to understand it. Sometimes rereading a section 3 or 4 times to think about it it as I go.

One of the methods I have used is the reformat method. If I am reading digitally, I will copy the text into MS Word. Then I read through line by line and reformat it as I go. I will fix the indents, adjust the spacing, and moving the cursor along as I go is a safe speed for me. It keeps me focused on the text and gives me enough time to analyse, it. It also gives me something to fidget with while I read: The keyboard.

If I cannot do this, or if I am reading a paper book, I need isolation. I cannot read with any distractions. Music helps me focus, but if I hear people talking, or the sounds of the tv, or someone needs to talk to me, I have to go back and reread the last 2 or 3 pages to catch myself up. If several distractions occur nearby, i may have to go back a whole chapter. And this is if I like the book I am reading.

Research materials don’t work so well. I often find I have to skim the pages, espacially if I have to work in a research group or discussion group. I can’t go full slownedd to understand the text as the rest will be waiting. So I have to skim and give my best guess about the contents.

I really don’t like this method. If it is worth reading, it is worth reading well. But that means I need my time to do so.

This has come up recently as I was talking to some coworkers about difficulties some of my students face. and I realized 1/2 of my grade 2 class reads for comprehension at my speed or faster….

I can read a lot more difficult passages, but when it comes to reading basic children’s stories and understanding what was said, I am slower. I always pre-read the files before reading to the class for this reason.

But still.

I love books.

We need to accept all of the children and adults who have difficulty with this though.

Downtime

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Recently I had to explain how autistic people need downtime. Unfortunately it was not a positive experience, and I have been sitting here in my rocking chair processing it for 4 days.

We need time alone.

A lot of people don’t understand this. When I get home from work. I greet my wife, and check up on her before checking out.

I am so glad I decided to keep my rocking chair from my old classroom.

The thing is, positive or negative, dealing with people is exhausting. I may have had a very good day at work, with a lot of fun things happening. When I get home I need 1 or 2 hours to sit in silence to process.

Sometimes I have had a very bad or difficult day, i will then need 2 or 3 hours to sit and process, and I may not even get through it all. But at least after the three hours I will be able to function again.

I will sit in my rocking chair, and I will pick up a Sudoku book, and stare aimlessly at it for a period of time. Sometimes I may even do a puzzle. But not always. I may just turn on Youtube and have some music or a show that requires no watching (Audio dramas are good). to just have background noise. I could use my headphones to listen to music, but I don’t often, unless it has been a severely bad day and I need to comepletely disconnect from the world.

I cannot put ideas forth when I am in this point.. I cannot hold a conversation, as I cannot focus on what the others are saying. They will have to repeat things two or three times, as I cannot focus. I cannot write, because that requires focus and the ability to string words together.

It requires communication. Which is not possible during these times.

Once I have had my time, rocking away, I can function better. But it can be difficult to transition from one activity to another. So if I have been staring at my sudoku for 2 hours, and my daughter wants to pay, I have to ask her to wait 5 minutes so I can right my brain, and get out of my chair.

I can then do things like marking, messaging parents, or interacting with my family.

The thing is, this down time allows me to reset my brain. Without this time, I will get frustrated easily. I will yell. I will get angry all with little to no reason.

This down time is so important to us autistic people. I don’t understand how this is hard to understand.

I have been introduced to this idea recently that if you do not give an autistic child any downtime, or only 5 minute intervals of downtime at a time, this will force their brain to “Right itself” into normalcy.

What’s so great about normalcy?

First this idea will be exhausting.

Second this will lead to the child being more prone to shutdowns and meltdowns publicly. The child may begin to hate themself. We are often diagnosed with depression, and many of us grow up hating ourselves. Forcing us to have these meltdowns will make us hate ourselves more.

The autistic suicide rate is approximately between 3 to 8 times higher than the neurotypical (normal brained people) because of this. Autistic girls and women are typically in the higher end of this.

Masking, or pretending to be normal, causes this. It directly causes this. Autistic children and adults who constantly feel that they are not enough for their friends or family because they think differently, or act differently are the most affected.

So, what goes through our head when we are shut down? Nothing. We just sit in silence and our brain is blank.

What goes through our brains during down time? Everything. We replay everything from the day, from the last week, and from the entirety of our lives, trying to make connections to understand what happened. Why people reacted the way they did to things. Sometimes I don’t figure this out until litteral years after the incident in question.

How did I screw up today? What are the upcoming consequences I will have to deal with to fix it?

I understand people see us, and they panic. They don’t know what to do or say, or “How to Help.” If your loved one is autistic, first make sure you let them know that you love them. Tell them. They will not know unless you do. We are terrible at reading between the lines.

Second, Make sure you let them know that There is nothing wrong with them. You want to help them manage themselves, and progress to have a positive life.

I am not saying a Normal Life. Never demand that.

That is like going to a person who is right handed and telling them that they will be normal if they only use their left hand. Or telling your little girl she needs to act more like a boy to get through life. The brain is wired the way it is for a reason, and learning to live with that is a Lifelong Disability.

Help your loved one to live the best life they can, but don’t compare them to “Normal” people. Watch them, and help them develop their interests. Give them space when they need.

Thank you.