Having Vs. Being

“It seems that for success in science or art, a dash of autism is essential.”   –   Hans Asperger.

It’s been several days now since I discovered I am autistic. I’m obsessed with trying to find out everything I can about it. Turns out it’s still really misunderstood, probably why I was never diagnosed in my 40 years.

Something I have come to decide though.

I think there is a difference between having autism and being autistic.

To me, having autism implies something you received or caught outside of yourself. Kind of like cancer or the flu. It’s an invader that you need to be rid of. People talk a lot about curing autism. I don’t like that, because what exactly do we want to cure? The way I see the world? Or perhaps so I can fit into society better? From my perspective, it feels like neuro-typical people want to feel better about their situations or because they will be more comfortable accepting autistic types of people into their lives and society. Of course, these are all my perceptions and sometimes I can be way off in what people are actually thinking, and it’s something I will always question within myself.

Before I knew I was autistic, I too thought it was a gloom and doom epidemic. You hear the statistics. 1:100 kids have autism, 1:88, 1:64. And so on. It sounds like ‘the autism’ is coming for us and invading our society and must be stopped.

What I really think is that we are just now starting to know more about what autism is, and what it is not.

I am autistic. I was born this way. God, for whatever reason, decided to give me a different and less common type of brain processor and it’s who I am. I don’t claim to know the science or the genetic makeup of myself or anyone else, but I do know it’s a part of me and trying to remove that piece will leave a huge gap of who I am.

Before I discovered I was autistic, I suffered from a lot of gut issues and stomach problems. When I eat certain foods like gluten and sugar that’s highly inflammatory, my symptoms get a lot worse. I develop severe mood swings, my thoughts seem to be more extreme, my relationships suffer…. My symptoms do cause me a lot of problems.

The same thing happens when I’m stressed. I never knew it, but I have a sensory processing issue as well. Going to Costco on a Saturday with my two kids is a disaster waiting to happen if I didn’t get enough sleep the night before, or am already frustrated or angry about something.

The other day I was standing in Costco waiting to pick up a prescription. Ugh! As I was talking to the pharmacist, I noticed all the different noises I was experiencing within the space. I could hear the beeping of the checker machines near the front of the store as well as the baby crying three isles away; the cart turning the corner to my right and another cart turning to my left. There was also the woman standing behind me talking on her cell phone and the guy behind me sitting in a chair tapping his hand on his cart, waiting for his name to be called. There was the samples lady near the main isle talking about her energy drink. I am aware of all this noise. Sometimes I can tune it out but other times, especially when I’m stressed or have anxiety, I can get very agitated by all this input. I never knew what to call it – sensory overload. I process everything I hear and decide if it’s relevant to what I’m trying to accomplish. In addition, my other senses of sight, smell, and touch are all active. It’s hard living in this highly stimulating world for any long period of time.

But sometimes I go to Costco and I can deal with the hustle and bustle of all the sensory information being received. There are a lot of factors for me and the coping strategies I have developed over these last 40 years.

Coping with my autism is something I learned how to do. I’m a smart girl. I realized in my late 30’s I need more quiet and alone time to be able to think and work things out in my head. I love to spend a lot of time at home in my garden touching plants and talking to them. Taking care and watching them grow is very therapeutic. Designing the layout of my garden has also been very therapeutic and a lot of fun. I wish I had more time to focus on that, but life is busy. I’m a wife, mom of my two young and very precious kids, and also have two bonus kids from my husbands previous marriage. Not to mention I’m preparing to start my own online marketing business.

What happened if you took autism away from me? Or cured it? Would I be a different person? Would the outside world be more comfortable around me? Would I be able to fit in, finally, to what society expects from me? Would I lose my passions I so deeply care about? If you take those components away, you would probably have to also take away the good stuff too. Like my ability to see and read architectural blueprints and be able to visualize what a structure would look like before it was ever built. Or be able to sort information in a logical order for it to make the most sense.

My favorite job in the world up to this point (besides being a mom) was being an inventory manager at a local clinic. My job was to track over 400 supplement products and make sure we never ran out, but also never had too much. It fed that part of my brain that needed structure and systems. When I first started, the entire medicinary was a disaster. My predecessor was so incredibly disorganized and could never keep the right stock of the right products and we were always out of the most important supplements our patients needed.

It was such a fun project to come in and get a handle of the situation and turn it into a well, oiled machine. I wasn’t expecting it, but I was able to nearly triple our sales over the course of five years just from having the right inventory stocked on the shelves. It turned into a game. How many bottles of a certain product can I have before I needed to order more, and not run out.

My coworkers were always amazed how I always knew exactly how many bottles of each product was on the shelf. Every once in a while there would be a product we had run out of and they would ask if I needed to back order it, but turns out it had been received by shipping just that morning, I had not had time to restock the shelves before we sold the product.

It is my super power. That job was the best thing that ever happened in my life up until that point. I also learned how to talk with patients and practice my social skills with them. I got really good at it. I even had the opportunity to provide customer service to some of the most difficult patients because I was patient in listening to their problems and working with them to provide the best solution for them. I practiced my empathy with them and discovered if I can show emotion for their situation, they will be helpful and kind to me in return. That is such a good skill to learn and have.

So if I was cured of my autism, does that mean I will no longer be able to hyper-focus on inventory management, and care about those games I played with each product to see how close I could get without actually running out?

I think my employer would probably have been disappointed if I suddenly lost that ability but I could finally have a neuro-typical conversation.

I guess what I’m trying to say is autism is not all bad. It’s good. Just because there are some down sides to being autistic doesn’t mean it’s something that must be gotten rid of.

“As part of human diversity, autistic persons should be embraced, celebrated and respected. However, discrimination against autistic children and adults is more the rule rather than the exception.” – UN Human Rights Experts

Read more about this quote here.

Let that sink in for a second.

I want to make clear I am speaking only about my autism. There are different levels of autism used to be described as low functioning vs. high functioning (aka Aspergers). I am just talking about my high functioning experience. If you would like to know more about the latest terminology to describe different levels of autism, read here. I don’t pretend to know what it’s like to have a disabled or low functioning autistic child and it is not my purpose to minimize the experience parents go through with a child with these issues.

When I hear things like “we have to find a cure for autism” or “we need to fix autism” it makes me frustrated because there is a serious lack of understanding of what autism actually is. It is how a person is made. It’s in our DNA. It’s no accident it runs in families. When people say these types of things it makes me feel like they lack the understanding of how autism runs deep to the core of me. And what they feel needs to be cured is a huge part of me. Like I am not a whole person because I am autistic. I’ve dealt with that my entire life and I reject that. Now that I figured out I am autistic I am finally whole!

Being on the spectrum doesn’t mean I am lacking in anything. My brain just works differently. Every person on the planet has some characteristics of autism. Some just have more of them, and more extreme presentations of those characteristics.

Monique Botha gave the most inspiring and amazing talk a few years ago on her autism. Her words are so profound and also terribly disheartening because society would rather get rid of autism than to have to deal with it. “I’ve been pushing for a society to be accepting my whole life, but it’s actually been easier to rewrite genetic code than to be accepting of us.” I encourage you to watch her. The statistics she shares are frightening and should be a wake-up call to us all.

I don’t have autism. I am autistic.

Published by Women and Autism

I turned 40 this year and just recently discovered I'm autistic. This is the story of my life and my discovery.

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