The Dreaded First Post

"What do we know about autism in middle and old age? Surprisingly little!"

- SPARK. 2024. "Autism in Middle and Old Age: What Do We Know, What Do We Need to Know?" Forbes EQ, August 1. https://www.forbes.com/sites/forbeseq/2024/08/01/autism-in-middle-and-old-age-what-do-we-know-what-do-we-need-to-know/

I have always written blogs about my experience of being autistic. I was blogging about being autistic back when my type of autism was called Asperger's. 

(Here's an interesting fact about that that a lot of people don't remember. Originally, what made the difference between being diagnosed with autism or Asperger's was whether the person learn to speak early or late. Most people with the most common type of autism learned to speak later in childhood than usual, or only learned to speak partially or not at all. People with Asperger's usually learns to speak earlier than children typically do, and often had advanced vocabularies at a young age. In the early 2000s, though, people began equating Asperger's with "high functioning autism." Some parents pushed for their autistic kids to be diagnosed with Asperger's instead of autism because it carried less stigma. It was more like saying your child had ADHD or a learning disability. Some parents of autistic children thought that if their children worked hard enough and had enough therapy, they could change their diagnosis to Asperger's. Eventually the DSM got rid of Asperger's completely and change the diagnosis to Autism Spectrum Disorder, which both simplified things and made them more complicated. But I digress...)

In my blogs I wrote from the point of view of a young autistic person finding their way in the world. 

But now I can't really call myself young, as I will be eligible for seniors only housing in less than 10 years. 

As I've become older, and can no longer call myself a young adult, some things have changed. 

For one thing, many of the people who help me are younger than me, sometimes by a couple of decades. I now have to work with doctors and social workers who think of the '80s as a distant and mysterious time when 12-year-olds were allowed to play outside without supervision, who don't know what a VCR is, and who only vaguely remember when the telephone was connected to a jack in the wall.

For another thing, I've given up on even trying or pretending to not be autistic. For a long time when I was younger, I was told that to my challenge in life was to appear normal. That if I just paid attention do what other people were doing, and copy them, I'd be fine. I still get told that by some people, but I no longer have the patience to listen to them. I let my autism hang out now. I flap when I want to. I jump when I want to. I don't force myself to make eye contact until my eyeballs are literally twitching. (I used to do that. The thing is though, making eye contact does not make you seem more professional or friendly when your eyes start twitching and you have to scrunch them shut in pain. People look at you weird. You can't see them looking at you weird because your eyes are scrunched shut in pain. But believe me, they look at you weird.)

Some things have not changed. I still look pretty similar to how I looked 20 years ago. In fact I am one of the only people my 91-year-old Nona recognizes, and I'm pretty sure that's why. Everyone else has grown and changed, but I've stayed pretty much the same. I'm starting to get a few wrinkles and gray hairs now, but people still mistake me for a teenager and ask me if I just got home from school. 

My interest really haven't changed either. I have a theory that most typically developing people don't necessarily lose interest in the things they enjoyed when they were younger, but give in to pressure to conform to what is age appropriate. For example, imagine two preschoolers who love the show "Bluey." One child is autistic and one child is typically developing. 

The typical developing child will probably notice that her older siblings don't watch shows like "Bluey." Older siblings may even make fun of the show and call it babyish. The child may notice that some of her more mature friends in classmates watch shows meant for older kids. If they wear a t-shirt with "Bluey" on it they might get made fun of it school. So gradually, they purposely begin to leave"Bluey" behind and move onto shows and characters that are meant for older kids. 

The autistic child may not notice any of that. They only notice that they love watching "Bluey." There are not a whole lot of episodes, so they get comfort from watching the same episodes over and over. As the autistic child gets older, her interest in "Bluey" stays the same.  The characters feel like old friends to her. The show feels like a part of her.

(By the way, I was nearly 40 when the show "Bluey" came out, but I still watch it everyday. It's a beautiful show. You should watch it. But I digress, again...)

I don't think my interests have changed a whole lot since childhood. I've always loved arts and crafts, reading, and being in nature. I've always loved animals. I've always loved everything rainbow. I've never had any interest in sports or science. I never got interested in makeup, hairstyles, or fashion. 

For as long as I can remember, I've always felt like I was somehow raw. I've always experienced the world more intensely than most people do. I've always felt as if I was slammed against a window, watching other people calmly go about their business. And that is still the same. 

I express myself best through writing. I sometimes joke that writing is my first language. And as my mental health has become even more fragile in recent years, I thought this could be a good outlet for sharing my thoughts and experiences.

So here's my new blog, as I start my adventure into middle age and then old age. Eventually I will be writing this blog from my Medicaid funded nursing home. For now, I'm writing it on the floor of the house where I am dog sitting for a dog named Blue and a cat named Slinky.

I've never been good at ending blog posts. I'm just going to back away slowly.