Where Rose Writes Very True Stories

I needed a picture to go with my essay.

WARNING The following is a lengthy rant written by a sleep-deprived mind, that had to write about it or it would explode. Proceed of your own free will and choice.

So there I was quite a few months ago, fighting to get my car to a doctor in Park City. I hit something in the fog. One tire goes out. A Good Samaritan stops and fixes it. Another tire goes out. I call the doctor’s office bawling and a Good Samaritan comes to get me. I finally get into his office, and he proceeds to save my life in multiple ways. Who is he?

He is an autism specialist. Within 10 minutes of meeting me, he says it’s clear I’m on the autism spectrum. Within a few days, he diagnoses me officially with High-functioning Autism Spectrum Disorder.

Because see, after 2 of my kids received this same diagnosis, and knowing it’s genetic and seeing myself so much in them—I just had to know! I mean, they had to have gotten it from somewhere! It’s a cluster of genes passed down. I had two regular therapists tell me, “I can’t see it in you,” which was so frustrating.

And I tried to explain to them, basically, “Of course you can’t. That’s been my mission all my life—to learn how to communicate and exist with you normal people.” And after I explained how much effort I have put into learning how regular people communicate, they still didn’t quite believe me.

This doc—a specialist—saw it almost immediately. It was so validating. And the book he gave me to read was life changing (‘Unmasking Autism’ is the book, by the way).

And after confirming it with every test I took, the doc was ready to break the news to me gently—but that was unnecessary, because I was actually really excited about this diagnosis. AND! I was relieved. So much of my life started to make sense!!

But then, of course, after I find all this out, I told someone about my diagnosis, and this same someone told me that being autistic means you are less intelligent. Not said exactly that way, but the message was clear. They managed to insult me, my children, and a bunch of other people I love. But I thought, “You know, this is a common misconception. I’ll just teach them about how intelligence has nothing to do with it—because in fact, many autistic folk are exceptionally intelligent.” But then this person later said the exact same thing again.

Guess they just wanted to make sure I knew where they stood on the matter.

The more time goes by, the more this really hurts. And I want to clear up some horrible misinformation that has been spread by cruel bias over the years.

I’m telling everyone what lit up my mind as my husband drove me home from that appointment with the awesome specialist: autism is simply a different way of thinking.

You probably know many folks who are autistic and neither them or you realize it! Folks who would likely be diagnosed with high-functioning autism are WILDLY under diagnosed because people didn’t start to really understand it until recently, so they didn’t know what to watch for in children. And many of those from my generation and older who would be considered high functioning autistic, have all learned to hide. Hiding became a matter of survival.

Here’s the really cool thing. It actually shows up early in how the brain develops. There’s a process call “synaptic pruning” that takes place in the brain beginning in infancy where the body snips away at synapses it’s not using. In folks with autism, this doesn’t happen to the same degree, and so there are more neurons and more synapses firing in an autistic brain than normal people at any given moment. Autistic folk actually tend to have more neurons, and bigger brains.

Because the brain has more neurons, it doesn’t function the same way a neurotypical (aka normal) brain does. It doesn’t process things the same way, and it often doesn’t learn things the same way—it is just a different kind of brain! There is a lot going on, a lot of focus on details, and there’s sensory sensitivity because it’s picking up more info than a neurotypical brain. There is a lot of focus on logic, and taking things literally is often the first instinct, so it’s not uncommon to not catch sarcasm or some jokes. Because of how much the brain is processing, it can become overwhelmed and need breaks to cool down.

Some years ago, after a medical emergency, a neurologist did a brain scan on me—and this is where I got one of the greatest compliments I have ever received: “You have brain matter… a LOT of brain matter…”

I don’t remember where he was going with that statement, just that the brain matter looked good and stuff. I was so delighted by that one phrase, that instead of listening as intently as I should’ve been, I was making plans to take a picture of my brain scan and frame it with that statement engraved in the bottom of the frame.

This was a big deal to me because growing up with other kids, I was severely mistreated by my peers and teachers because I was considered weird and difficult. I was called stupid for not getting jokes because I took everything literally and didn’t always realize when people were making fun of me. I was berated for not understanding social customs that didn’t make logical sense to me and for communicating too honestly, and for not being able to read minds. I also have a disorder that often comes with autism where I can’t memorize faces easily. I have to see a face many times in order to recognize it—faces just kinda blend together. It’s a problem.

When I got older and started dating, these things were used against me and led to abuse. I was told I was too stupid—no one else would want to be around me because I was brainless. I was too stupid to think for myself. My interests were all stupid and flawed. My talents were stupid. I was too stupid to know what I wanted, too stupid to be of worth. And I stayed in that relationship because I just didn’t believe I had a choice. I was helpless. No one else would ever want me, because I was worthless.

I was worthless.

Of course, it wasn’t true. But it was just too easy for me to believe because of how I’d been treated in the past.

Eventually, I just stopped talking. If I spoke, I was a robot that fell back on programmed responses.

It took me YEARS to break free of the prison that this abuse put me in. It wasn’t until well into my marriage with Paul that I started sharing my observations and ideas again. I remember—my brain felt so rusty, the wheels were covered in cobwebs. But they were moving again, and it felt AMAZING. I was coming back to life.

Paul often says he loves me more than ever now. Now, he actually knows who I am. He knows the person who was trapped behind all of those walls.

I’m sharing this because I want folks to understand how dangerous and horrible it is to turn someone into an “other”, especially a child. It is cruel to assume that just because someone views the world differently and learns differently than you do, that they are stupid and a less valuable member of society. Their brain is different than yours, but there is NOTHING WRONG with that.

Say a world renowned, life saving surgeon comes to your country but doesn’t speak your language. Are they suddenly an idiot because they don’t speak the way you do or fully understand your culture? No. They’re still a life saving surgeon. They’re not to be discarded, and they don’t need a “cure”. You just need to break down the barriers that are keeping you from understanding each other.

Give autistic people and children the chance to learn the way they learn. Try to understand them. Give them patience and compassion. Let them be their weird little selves and teach them how to interact with others—and then watch them soar! For real, listen to these kids, and they will surprise you.

That’s the thing. I believe our sensory sensitivities and our ability to hyper-focus on things, is really like a super power! Dude, you can count on us. We get things done, because a project not being finished will drive us crazy. We will learn every little thing we can about things we love, find fascinating, and are passionate about. We work hard! … and then need a break to charge the batteries, but then we work hard again!!

My son’s elementary school has been AMAZING with my him. His kindergarten teacher in particular is one of the best people, ever. Working with her and the incredible staff at the school, we found a way to give my child what he needed to feel secure and not overwhelmed, and helped him learn in his own way. And now, leaving kindergarten, he is reading at a 4th grade level and solving multiple lists of math equations—simple equations, but still! And he loves it!! And my oldest son’s IQ test showed his IQ is well above average, but he struggles with certain aspects of school. He will be starting a class next year at the high school that will help him develop his strengths, as well as develop the skills he needs to overcome those things that are getting in his way so he can thrive in a neurotypical world. I’m so excited for him. I know these kids are going to do amazing things!!

I am SO GRATEFUL for the huge strides that have happened over the years in helping autistic kids flourish! This is amazing!! I wish I’d had these resources when I was young.

But man, there is clearly room to improve in erasing cruel prejudices and misinformation among the public that lead to dehumanizing and exclusion. I would love to see more questions asked rather than jumping to conclusions based on assumptions perpetuated by years of really awful bias. These children and grownups are intelligent and have so, SO much to offer, and this crap needs to stop.

Anyway, I have a new obsession, and it’s finding and sharing things I learn about autism. Paul told me I should focus my psych major on it, and I realized, “By gum, you’re right!!!” And so I am.

Anyway. The end.