The Constant Autism Challenge

You know the image of the quiet, distant, rocking autistic person? I’m not that person. I am autistic, but I am not quiet. Sometimes I can interpret body language, expressions, social queues, and tone. Sometimes I can curb my odd communication style, inappropriate rambling, and even my stimming.

I cannot do any of it unconsciously like neurotypical people, and I can’t do all of it at one time. Something always slips. It is exhausting to keep track of all of those things just because I want to exist in a community. In addition to being an ADHD Aspie, I have fibromyalgia with chronic fatigue. Functioning with those symptoms, takes up much of my reserves, leaving even less energy to control my “disruptive Autistic behavior” – ie: talking.

Chatterbox

I don’t connect easily to people, and my brain overcompensates with my storytelling. I love stories. I love hearing them and exchanging them. If you tell me a story, I will likely grasp onto relatable elements and fire back with, “Oh, that reminds me of the time…”

This is my brain’s attempt to understand the context and help me empathize. I am not trying to “one-up” you or be the center of attention. I definitely do not want to be the center of attention. I want to know your feelings, so I can “get” your story. That’s why I ask so many questions. I ask way too many questions. I need to know things. I need to understand things.

I sometimes interrupt. I don’t mean to interrupt, but my brain doesn’t naturally register other people talking, so if I am not careful– I don’t realize I am interrupting until it is far too late. My brain will yank one of the dozens of thoughts bouncing around, throw it to the front, and forget to register that someone else is already talking.

If someone asks me not to talk to them because they need to focus, no problem. If I catch myself interrupting, I apologize and let the person talk. If someone asks me to let them finish, I absolutely do, but most of the time, people don’t ask. Instead, they get annoyed.

This one trait – overtalking – has led to most of my painful experiences with discrimination and isolation. Many people say they value those who are honest, generous, kind, compassionate, intelligent, creative, and a list of other “values” that people claim are important, but in my experience people really just care if you comply with the social constructs that keep everything calm and “normal.”

I get it. I am exhausting. I’m also very kind, genuinely care for most people, and I’ve been told I’m generous. I don’t totally understand why it’s considered special to be willing to share with others. I feel if I can help someone out, then I should help them out unless there’s a valid reason to not help.

If it is something that hurts me (or others) in some way then I won’t do it, but if it is just an “inconvenience” I will do it because what is the real cost? If it isn’t even an inconvenience, then I am really confused why this is seen as “generous” as opposed to just being a person. In September 2019, I was reminded why none of those supposedly valued traits matter most of the time.

Adventures in Pottery

In Spring 2018, I decided to start taking pottery classes at a local studio. I worried if my physical disabilities (fibromyalgia and chronic fatigue) worsened, I wouldn’t be able to tackle that passion in the future.

I’ve always been a creative person. I’m a writer and I love visual arts, but the skills don’t come easily to me. At first, I thought I’d made a mistake. The instructor and I weren’t a great match because my learning style is unique and because my body doesn’t do what it’s told sometimes.

To accommodate the lack of mobility in my arms, I actually needed to throw like a left-handed person. Additionally, some of the members of the studio took issue with me because I talk so much. It was disruptive to them, even though other people were talking, and I wasn’t talking to those it clearly bothered.

After a few months, I met an amazing instructor and things changed for me. I switched to his class, and, though it wasn’t always smooth sailing, things were pretty great. He encouraged experimentation, finding your own methods and style, and, above all, he encouraged patience and a love of clay.

I applied for a membership to the studio in June 2018 and was told there was a long waiting list of at least fourteen people. I desperately wanted to be a member so I would have more studio storage and, most importantly, be able to come and go as I pleased. With my disabilities being so unpredictable, I wanted the flexibility of a membership so I could spend more time in the studio.

After several months passed, I checked about the waiting list and was told by the membership coordinator that someone had started a separate list without telling her, so there were even more people ahead of me now. That sucked, but there was nothing to be done. So I shrugged and continued to pay for classes and do my best to make it to the studio during open hours, but it wasn’t often thanks to my body.

A few months later, when I asked again, she told me it wasn’t just about when someone applied. They also had to consider what times people liked to be at the studio and whether they were hand-builders or wheel-users. This was not something anyone else had ever mentioned.

Around this time, I realized this woman was one of the people who didn’t like me. It’s not always easy for me to pick up on the clues, plus I often attribute the “she doesn’t like me” thoughts to anxiety-brain and ignore them, but she made it…clear.

She rolled her eyes when I said hello, she acted like every question I asked was an annoyance, she would single me out and tell me to be quiet, even when others were talking. She hated that I talked so much, even though I specifically tried to limit my conversations to people who seemed to enjoy them.

Many quiet people love to hear my stories and enjoy the “prompts” I give them to help them share. It is possible the coordinator had some personal reasons as well. She had some drama, that I was unaware of, with another woman there whom I had befriended.  I never knew the true reason she decided to gun for me, but it doesn’t matter.

At the beginning of 2019, I asked her again about the membership list because I noticed how many people had changed. She told me I was near the top, but she’d have to check to be sure but I was definitely the top three. We all knew the studio was expanding to almost double the size and there would be room for at least six new members. I was so excited. She was not as excited.

Then we had an incident.

A Friend and A Foe

I had made a good friend through the classes (no one was more surprised than me), and during the preparation for the studio expansion, my friend was out of town on a hiking trip. All students were asked to move their items from their shelves so the space could be rearranged.

Friday night, I noticed there were a few bisque pieces (pieces that have gone through an initial firing but haven’t been glazed and finished) left on my friend’s shelf, so I texted her to let her know she needed to move them by Sunday. She likely had no clue the pieces were there because whenever she moved her stuff, they had still been in the kiln. When I went to move the last of my stuff on Sunday, her pieces were still there. I called her and then texted to tell her I would take them home with me if she wanted.

I finally got a text back, right before I left, telling me I was her queen and to please take them home. I packed them up because, of course, I wanted to help my friend. I realized that the studio president, who was moving stuff around, might panic if he saw them missing. I didn’t want him to worry, so I left a quick note letting him know they were safe and with me. I could not have predicted what would happen.

First, he emailed me right after I left the studio asking if I had permission. He then told me it wasn’t okay to take other people’s pieces without their permission, and I needed to return them immediately. I didn’t see this message because I don’t check my emails all that regularly on the weekend. Before I checked my email the next day, the woman in charge of membership (who was in a relationship with the studio president) emailed me:

Again, no one is permitted to take another person’s pieces without the owner’s express permission. By doing so, you have put yourself in jeopardy of no longer being accepted into classes.

There will be someone at the studio today until about 4pm. It would behoove you to return (redacted for privacy)’s pottery to the studio today.

I was rather stunned, considering this woman shouldn’t even have known anything was happening and because I was just helping my friend. I responded to the president’s email with:

Hey (president’s name redacted),

Sorry for being unclear. I had permission but didn’t want you guys wondering where it went since she hadn’t stopped by the studio. She’s been in Shenandoah with no cell signal (so she couldn’t call).

She didn’t know she had anything left other than some greenware (the bisque pieces got added after she cleared her shelf). I took the bisque pieces and left the greenware.

Sorry for the added stress.

I had texted her to let her know there was stuff, and she had me grab them for her.

I then responded to the other email:

Hi,

Sorry I hadn’t checked my email until now.

I had permission. (Name redacted for privacy) and I are friends and she has been out of town. She didn’t have cell signal so she couldn’t get call you, but we managed a couple of texts.

She is on her way back now and pulled over so she can email you.

I would never take someone’s things.

Are we okay?

I assumed, of course, this would clear everything up, meanwhile, my friend called and emailed the studio just to be safe. I called them to make sure they weren’t still anxious about it, only to have the phone answered by the “Membership Woman.”

I explained the situation and she responded by telling me that it was still wrong, we should have told them, I needed to have written permission prior to taking pieces (something I had never heard before), and that they wouldn’t have done anything to the pieces so it was totally unnecessary (despite their repeated insistence that everything be moved). She begrudgingly told me to just drop the pieces off the next day.

Things got worse after this because other members of the studio were made aware that I had done something wrong. I am not entirely sure what they were told. Both the president and membership woman were very cold to me afterward, but I shrugged it off. It was clear I hadn’t broken any rules and my friend had backed me up and let them know the same thing.

Unwanted

A few more members were added to the studio, and I was growing concerned. I had missed some classes due to my fibromyalgia and some work commitments, so when I returned I wasn’t ready for what I would find out.

I was already depressed because I couldn’t come up with the money for the class fee and had originally hoped I wouldn’t have to because I would be a member. Members pay more overall, but they don’t have to pay it all at once (they pay monthly rather than every nine weeks).

I was already fighting my anxiety attack at the thought of having to lose one of the only hobbies I have ever managed to maintain with some consistency and to have to say goodbye to the few friends I’d made, at least for a couple of months. Then it got much worse.

It turned out that once they completed the expansion, they finally did add some new members. Specifically, they added twelve new members in August 2019, several of which hadn’t even started going to the co-op until after my application had been entered. I was devastated.

I had a full-blown anxiety attack meltdown, which takes the form of me crying hysterically. I packed my stuff up as fast as I could and went to say goodbye to a couple of friends that were there that night.

I tried to find out what was going on, but no one in charge would talk to me. The best information I got was that several members considered me to be “disruptive” (the talking) and “argumentative.” The second part seemed to be a combination of my odd communication style, people like to assume because you “question” them you are arguing with them.

I ask questions to try to understand things that my brain doesn’t process properly. Also, if I am told something that contradicts previous information, I ask questions until I figure out what the differences are or which information is correct. This is often taken as arguing instead of just my need for clarity. Other complaints seemed to be comprised of stories people either blatantly lied about or confused with someone else.

In the end, it didn’t matter. The president and membership woman broke up, and he was the only one who could actually overrule the membership decision. He wouldn’t even respond to my text or phone call.

Sharing, Healing, Hoping

Even now, it truly breaks my heart. I thought if any community could handle my oddities, it would be an artistic community. I thought my goodness, my generosity, and my creativity could help pay the cost of my annoying nature, but it never does.

I will get through. I always do. I managed to get an education, a partner, and an independent life. Most people with my challenges are not as fortunate. So why write this? Why publish it after all this time?

I want people to be more aware of invisible disabilities and differences. I want more compassion in this world. I want the other members of that studio to see this someday so they know why I couldn’t be there. Even if just one of them realizes a person’s value doesn’t depend on how much of an inconvenience they are to others, it will be worth sharing.

I am a valuable addition to any community. Communities need people that care and have passion. Communities need diversity, not just in skin colors and cultures, but in minds and personalities, too. Those differences help us grow and thrive instead of stagnating and becoming toxic.

I deserve to be a part of a community even I “disrupt” your neuro-typical life. If you hear yourself saying things like, “Maybe it’s just not a good fit,” there’s a good chance that you are saying that to make yourself feel better about discriminating. Next time try really considering what is important and acting with compassion instead of convenience.