Exiting “Quarantine”

I have been incredibly fortunate throughout this pandemic. I have had a job that was more than willing to let me work from home, the transition to working from home was pretty simple – I had already been working remotely two days a week prior to Covid. And, on top of that, I have been incredibly fortunate that my company continued to have business success during the pandemic, this wasn’t true for all workers who were able to shift to remote.

But, now, a year and a half later, with vaccines rolling out and the reduced spread, it is becoming quite apparent that we are now going to be expected to “return to normal”. Whatever that is.

Outside of traffic hours, I live 25 minutes from my office. During traffic hours.. I live between an hour to an hour and a half away (and have had times where that commute took 2 hours thanks to accidents). I find it odd that people would even remotely be willing to put up with these kinds of commutes again as we return to “normalcy”.

Personally, I have thrived with working from home. Even when I am struggling to exist because I’m getting burnouts (commonish for me, unfortunately, I’m someone that is kind of a workaholic and really good at not listening to my own self telling me that I’ve pushed myself too far) I can still do some work at home. In the office I’d also have to deal with those social shenanigans and I would typically just call in sick for my own sanity.

I’m dealing with a pretty pervasively awful burnout at the moment, it comes from doing honestly insane amounts of work with no time off since October (other than company holidays, and again, my own choices there). I know that if I take time off I’m just offloading my work onto my small team and/or I’ll have a ton of work when I come back, so it usually seems far less stressful to just overwork myself than to try and take time off.

And now, I’m trying to imagine a world in which I go back into an office.

There are benefits, for sure. It’s nice to be able to overhear conversations and learn thing that I wouldn’t otherwise learn just by hearing people talk about interesting problems or predicaments. It’s nice to occasionally get invited out for a drink after work, you know, the typical things that happen.

But generally I’m just thinking about how I don’t get to wear my comfy clothes, I put up with horrific traffic, have to deal with the constant buzz of conversation and keyboards as people get their work done, fluorescent lights, random noises, people bringing in their “emotional support” animals, and just so many conflicting sensory activities and I already don’t want to deal with it.

I enjoy being able to shut my door to my home office and just focus on the work I need to get done until it’s done. Not getting people making dumb jokes about how I was lost to the world because I didn’t hear them call my name because I was in my work. Not having people make fun of one of my most common self-stimming behaviors (running my hair across my lips) because let me tell you about how funny the joke/question/statement of “are you eating your hair?!” is after the 300th time.

After a year and a half of not dealing with a surplus of stimuli, it seems overwhelming to even think about going back. This whole rush to return to “the before times” seems like some people are caught up in a nostalgia trip instead of realizing what we gained from the pandemic. And, a quick rush to go back to ableism and exclusionary behaviors.

“Real Autism”

The title of this blog is a phrase I have now heard a few times from friends of mine who have been involved in education. At least one of them has been involved in educating autistic youth. The others mostly teaching mainstream or specials classes, so loosely involved in autistic education.

This always gets brought up as a talking point along with “autism is the new candy diagnosis, everyone has it”. “Everyone has autistic traits now! If you don’t like loud noises and prefer to be by yourself, then you must be autistic!”. It’s the new catch all diagnosis like ADD was in the 90s!

Rolls eyes.

Yes, “rates” of autism are “increasing”. That happens when your understanding of a disorder increase and more studies are conducted and you realize that you have actually missed people from being included in the diagnosis. The inclusion of Aspergers into ASD increased the rates for one. Further studies into women with ASD is doing this as well. Further studies into the now bad-form “high-functioning” label are also increasing the rates. This is a good thing in so many ways. It means that people will feel accepted and they won’t feel alone.

Personally, the label was like a giant weight was lifted off of my shoulders. I cried from the relief. There are people out there who actually know what it feels like to be like me. People who actually understand me? Increased understanding and knowledge is what led to this moment of relief and people deserve to have this moment for themselves or to grow up understanding why they aren’t quite fitting in or being understood.

“Real autism is isolating”

As if we need to gatekeep Real Autism™ to only those with nonverbal autism who need higher amounts of assistance in school/work who may stim in most “normal” environments.

It is absolutely infuriating to hear someone trusted and loved diminish my own existence and feelings with “real autism” because I look normal from the outside. Because she respects me and sees things in me that make her envious. Because I fit the mold that people are supposed to achieve in life. I have a job that I worked hard for, I hit the success mark, a husband, house, kid, pets, the whole nine yards. I’m doing alright, everything is fine, right? Autism is just some weird label that they give to people who are extreme introverts now, after all.

Autism is isolating. Extremely isolating. I cannot speak for everyone on the spectrum, because the spectrum is vast and we do not all share all of the same traits and experiences but I can speak for my experiences. I come from a family that made it clear I was not to ask for help, that it would not be given and I should learn to stand on my own two feet. No support network. I had two best friends in grade school. Both of them stopped talking to me before we graduated. I stopped talking to literally everyone else pretty much as soon as I graduated. The door was shut so let’s move on, so to speak.

I have no one I could call to go for a beer after work because of a stressful day. Might be able to convince some co-workers to go to a local nearby bar after work, but that’s not the same thing as a trusted friend to blow off steam. I wouldn’t even begin to know who to call if I had to unexpectedly get someone to watch my dogs for a weekend emergency (I’d pay extra for a kennel or take them with me).

I worry because if some freak accident happened that killed or incapacitated both myself and my husband while my daughter was in school who would even pick her up while her godparents were traveling to be able to take care of her?

This isn’t to say that I’m totally friendless. I do make friends, but making friends comes at a cost that it seems neurotypicals don’t quite have to pay? I moved to a new city in early 2017 and I have focused on career advancement. I have done amazing things with my career — gotten certifications, degrees, promotions, and landed my dream job! But it came with switching companies and teams and being exorbitantly busy and socializing fell drastically to the wayside. How do normal people manage to do the career push while still gaining and maintaining friendships?

There was a time in my life when I felt like I had the most “normal” experience. I fit in, had a nice group of friends. I found my people. I still talk to people from that group regularly almost ten years later even though I don’t even live in the same state any more. I can’t even tell you what spell I cast to have this happen, it just seemed to fall into my lap. I also wasn’t chasing a career, I was complacent at my call center job.

“Real autism is debilitating.”

Again, with the gatekeeping. I don’t think I really need to point out that it’s not really for people who aren’t experts in the whole spectrum disorder to really be trying to gatekeep what autism is. It’s definitely not for someone who isn’t on the spectrum to be telling someone who IS on the spectrum that their experiences aren’t valid enough to be classified as Real Autism™.

I am soon to be 32 years old, and still slowly untangling the webs of mess of years of masking and trauma that came from not even knowing what and why I was different. Realizing that I have had so many years of training to just be the perfect paper doll of whatever anyone wanted me to be so that our interactions were easy and simple and could go away.

I was pretty much always taught as a kid that I had to avoid and resolve conflict and it was expected that I would give people the answer that they wanted, so I basically learned to do this with everyone, in all situations (guess how fucked up this gets in a lot of questionable situations…) I’ll just put on a new mask for any situation and be a perfect little chameleon as a survival instinct to get through pretty much anything.

I also realized that there are people who know and intentionally seek out autistic individuals because we are more naïve and trusting and take them based on what they say more than their actions. They are manipulative little jerks who will use you for their own gain and do not care about the harm they do in the process. It only takes one of these people to do some untold damage to a psyche.

Autism is real, no matter the support level needed. No matter how real it looks to you on the outside, from your curated exhibit view of their life. Just because you can’t see someone freaking the fuck out in the shower because they landed their dream job and that is terrifying. Or because they are driving in the rain and their husband is snoring in the passenger seat and the sound of the snoring and the rain on the car roof is causing a sensory overload that is making them want to scream and run away and pull their hair out. Or because you don’t realize that the normally verbal person is incapable of getting the words out right now and there is an entire paragraph screaming and beating against their brain burning to get out that they literally can’t let out and its tearing their brain and entire body apart. Just because your curated view looks intact and fine, doesn’t mean that it’s not Real Autism™.

Quick Personal Update

I almost hesitated to even really write this. It seems kind of silly, overall. But, y’know, autism, and I struggle to see why it matters or why this is important to anyone.

But January I started a new promotion which is basically my dream job and super, amazingly exciting. And also takes up mental energy while I’m getting used to the new flow of things. In the land of an autistic brain, it also means that I struggle to exist more days than others and as such, I look at my drafts I have half written and can’t even figure out how to even add another word or make sentences happen.

Then the whole events of January 6th happened. That was frightening and disturbing, and the general lack of accountability for many people involved is still disturbing, but we don’t need to really press into that too much.

I can barely recall what happened to the rest of January after that?

I am in Texas, and last week was yet another failure of a government to properly look after and prepare for its people. I do not want to bring politics here beyond that statement: but people froze to death from not having power, I couldn’t sleep from worrying about providing basic needs to my daughter, and I still don’t have water that I don’t have to boil available in my home despite the fact that we are now five and a half days post thaw and nearly every other water utility provider nearby has removed the water boil notice. This was categorically a disaster.

My kid’s school has extensive water damage from burst pipes, they still aren’t letting kids back into the campus until next week at the earliest. There are other campuses in the district with extensive damage as well, and it looks like it is going to cost the district a hefty amount of money to fix this all (which they are hoping will be reimbursed by the state.)

Silver linings on the horizon! Little Miss has her sixth birthday this Friday. She is very excited because we will be making a dinosaur cake that I bought a pan for many moons ago and haven’t used yet, so she has been dying to use it.

The Current State of the World

I’d be lying if I said that the current state of the world didn’t make me want to shut down a little bit. It’s been hard.

I don’t want to get too political, that’s not what this space is for, but this entire situation has been strange and scary. The holidays were interesting at home, and then there was a bombing. That’s enough to make me want to shut down a little bit already.

And then it just.. got way worse?

Things seem a little bit scary and uncertain right now, it seems to be all anyone is talking about, and I had to tune out. I wasn’t able to keep my focus on anything important while I was thinking about insurrectionists and gallows and explosions.

So I took a step back. Focused back on the smaller things in my life that I actually have some power over. A small sense of normalcy is returning for me even though a chunk of myself is telling me that I’m just the cartoon ostrich sticking my head in the sand.

Do what you need to do to keep yourself together in trying times. We all need to do it. Take care of yourself.