Shifting System Paradigms Together

An Invitation to Neurotypical Friends

I am lucky that my world currently overlaps with that of many thoughtful, inclusive Quakers. On a Saturday in December, I was invited to the annual Christmas gathering for the ladies at the meeting: a night to craft, snack, and chat. My new neighbors were planning to go and offered to take me along. They are also the ones who now regularly take me to meeting. I have spatial distance and processing issues that prevent me from driving, and transportation has been a major barrier to participating as much as I would like. Still, people have tried to include me as much as possible, and I’m not just referring to the rides.

Quakers seem more open-minded, believing they can make a difference in this world. This seems to attract a lot of neurodiverse individuals: people who long for a fairer world. However, even in meeting, the predominant mindset is still neurotypical. 

Let’s get back to that Saturday, and I’ll show you what I mean. The person hosting the event called and talked to me ahead of time about how they could help make the event more accessible for me. Having a clear picture of what to expect usually helps alleviate anxiety. Why? Delayed processing makes it difficult to adapt quickly to unknowns, which can lead to frustration and meltdowns. Although meltdowns are a physiological response controlled by the autonomic nervous system, like our heartbeat or digestive system, having them in public is still embarrassing. If I am going somewhere new, where I don’t know people, and can’t predict what will happen or how people will react, it can make me not want to leave home. Having a point person to answer my questions and help me plan around potential problems ahead of time allows me to participate more fully. 

After arriving at the house on Saturday, we were ushered to the back door—one of the accommodations arranged beforehand. The main entrance, where everyone else was headed, had a lot of stairs that I couldn’t climb. I had recently aggravated my ankle, which I had injured earlier in the year, and was wearing a medical boot. Spatial and body awareness issues make me clumsy; I get injured more often than the “average” person. Without planning ahead, I would have tried to go through the main entrance with everyone else, gotten frustrated, had a hard time switching to an alternate plan, and might not have been able to enjoy the rest of the night. But by planning ahead, I ended up having a great time. 

When I entered the house, I could smell the delicious chocolate chip cookies and other snacks. Most places, I can’t eat what everyone else does because I have a gluten-free diet. They had plenty of snacks here that I could actually eat. They also had food for people who were dairy-free, vegan, or who couldn’t have nuts. It can be tricky catering to so many different dietary needs, but they did an amazing job.  

I started talking with the host and other people I know, proudly announcing that I had just started my own business: Nettleton Writing&Editing. Because of insistent productivity and not being able to do things in the same way as others, I cannot even get what people think of as an “easy” job, like bagging groceries or working in a sheltered workshop—not for long, anyway. However, I am highly skilled and hold two degrees. I’ve figured out that though I can’t get a job, I can create one, with the right support. Some of this support comes simply from knowing that people at meeting are cheering me on. Other times, it means more practical support, like one of the ladies I talked with that evening who offered to come over for an hour to help me learn more about using social media. 

I haven’t had as much opportunity as others to interact with the world and its current technology because I haven’t had access. Some neurodivergent people struggle and blend into the world despite the cost. Others, like me, can’t—no matter how hard they try. And those who can’t are often segregated from society: shuffled into hospitals, day programs, and group homes. At least, the “lucky ones” are. Others end up homeless, in jail, or dead. Resources and opportunities are scarce. 

That’s just how the world is. I have heard this phrase uttered often, usually after an injustice of some kind has occurred. It makes me want to bring the speaker along to a Quaker space, like this Saturday get-together. Maybe the people who quote that phrase find their world to be the way it is because it’s too small, too big, maybe too quiet, or too painfully loud. There must be a reason behind such black-and-white thinking, right? Most neurotypicals seem to get defensive and spew trite phrases when someone questions them about norms. They have extremely rigid social expectations and are terrified of change. They are very sensitive, poor things. They also have a way of turning simple problems into complex ones. They do not seem to recognize that in the social world, it’s people who create “how the world is.”

Quakers seem more open-minded, believing they can make a difference in this world. This seems to attract a lot of neurodiverse individuals: people who long for a fairer world. However, even in meeting, the predominant mindset is still neurotypical. Cultural misunderstandings and conflicts can and do occur, usually with one or both sides being unaware of what the problem is. They can’t see things from the other’s perspective. I’ve been told that not being able to see things from another’s perspective is an autism trait. However, almost any trait can be flipped on its head; they are all human traits.

So, looking up at a wider horizon, my Easter hope is this article will have been read and utilized: opening perspectives about neurodiversity that will help changes in our Quaker communities hop along a little faster. 

After I sat down and started nibbling on my gluten-free goodies, I struck up a conversation with someone I didn’t know, a young lady going into a mental health field. I stated that I do not believe our current mental health system is good for either patients or providers. After going around and around about our differing opinions, we came to the conclusion that we agreed that the system has issues, but we were at odds on how to go about solving the problem. I proposed large system changes—a complete paradigm shift. To me, shuffling things about in hopes of creating change is like moving furniture around and redecorating a house instead of addressing the crumbling foundation. Neurotypicals seem to avoid major system changes as if they would be the end of the world. 

Sitting in the car and waiting to go home, it struck me as to why neurotypicals seem to have such difficulty conceptualizing major social changes, whereas I have trouble with changes in daily routine. As someone who is autistic, I’m a detail-oriented person. I see an up-close picture of life; that’s my world. Neurotypicals tend to see things on a broader scale. They have phrases like “that’s just a detail,” because altering one thing doesn’t change the whole picture for them. Change something as big as a system though, and that picture alters. The world they know disappears. 

What does this insight have to do with Quaker meeting? Whether neurodiverse or neurotypical, we need to understand that people will react poorly when someone says or does something that threatens or invalidates their worldview. It can make one feel frustrated and alone. We need to seek out the angles where our neurological-based worldviews can be seen in the same frame—so we can shift that frame together. What’s in a world is determined by the connection people have with one another. Over time, we can learn different ways to change our internal lens and create new relationships. Yet, if we are so scared that we can’t let go of our own perspective, connections get confused, even severed. However, like the spring, there is always hope. No matter how confused or frustrated we get with someone who doesn’t share our worldview, as long as we don’t give up we will never fail one another. 

I wrapped my scarf around me a little tighter in the chilly car as a myriad of thoughts and emotions from the evening swirled around me. No, I thought, the swirl was too big to have accumulated so quickly. I just hadn’t seen it amassing. It had taken seven years of attending meeting and building relationships with those present to make tonight a possibility. 

After arriving home, taking off my shoes, and setting down my sunglasses, headphones, and weighted backpack, I remembered the email with upcoming writing opportunities for Friends Journal. I was tired and wanted to ignore this nagging reminder, but I couldn’t. I needed to write about that night for the neurodiversity issue. Christmas hadn’t yet passed, but my mind was leaping ahead to March and to Easter in April. While many Quakers aren’t big on holidays, they are a necessary part of keeping track of my life. Holidays are growth markers. They give me a sense of time, another important type of relationship: a perspective that can get lost when someone is buried too deep in the details of day-to-day living. So, looking up at a wider horizon, my Easter hope is this article will have been read and utilized: opening perspectives about neurodiversity that will help changes in our Quaker communities hop along a little faster.