We all know the saying “I’m at the end of my rope.” This is often muttered after a particularly grueling day or just a difficult or trying experience. I’ve come to realize during my short life that everyone has different lengths of rope for different things. This has been on my mind because recently I was chastised for prioritizing my comfort and security over sacrificing my wellbeing for the greater good. I think people often don’t understand how short the rope is for those of us who are neurodivergent. My disability has given me some gifts, and there are some drawbacks. Activities that most people would find slightly inconvenient or even enjoy cause me anxiety.
The best examples I can think of are the grocery store. I love eating healthy, and that involves going to the produce section. The produce section is full of triggers. If I see spotted bananas, my skin starts to crawl. The worst part is selecting apples. I start stimming immediately, and my body starts to prep for the event. My breath and heart rate increase and I’m rubbing my thumb and index finger together quickly to soothe myself. If I pick up one with a brown soft spot, I have to put it down quickly and take a deep breath. I’ve learned over time to tell my body that the anxiety it feels in the produce section is unnecessary. I ground myself by reminding my brain that I’m not in danger and a spoiled apple poses no harm. Even when I have that part of the trip under control, the overwhelming smells coming from the other fruits are hard to stomach. I’ll clench my jaw or click my teeth together.
Another space that provides all kinds of challenges and stressors is the workplace. I acknowledge that I’m fortunate to have full time employment. I enjoy my job most of the time, and I’ve learned a lot. I’ve had to create internal checks to make sure I’m masking appropriately. It starts the minute I walk in the door. I remind myself to say hi to my coworker even though I’d rather keep my earbuds in a moment or two longer. I do my best to make small talk while I get logged in. My social skills mentor drilled into me the importance of finding shared interests, which has helped. Once I’m logged into my computer, I start interacting with customers. When I first started, one of my coworkers asked why I never made eye contact. Since that day, I have reminded myself every day to make sure I make eye contact with each customer with whom I come in contact. I’ve been known for putting my foot in my mouth. One of the hardest aspects is not understanding the sarcasm of my coworkers. They’ll make a joke and find it hilarious; I don’t understand why it’s funny. I want to understand. I like jokes and I like to laugh. Often I end up being the butt of the joke, whether they mean it intentionally or not. After I spend my week masking while at work to the best of my ability, the weekend arrives.
I love the weekend because I don’t have to mask. I spend as much time by myself as I want. Social events on the weekend present another challenge. I love my friends and spending time with family. The only problem is after about an hour and a half, I’m overwhelmed and need a break. There have been times I’ve been at parties and I’ll sit in a quiet room for thirty minutes to recharge. I then go back to the social gathering and feel fine. I want to experience community, I just need more space than others.
I bring all of this up to say that since my diagnosis, I’ve become very protective of my emotional and mental wellness. It took me a long time to understand that no one was going to cultivate an ecosystem for me where I felt well and whole. It’s taken a lot of trial and error but now I listen to my body and know when to back off. I know this well because I’ve been overloaded since childhood. I recognize the tightening in my chest, the shallow breaths, and the feeling of wanting to jump out of my skin and just be anywhere else. There are many beautiful things in the world I live my life, and it’s not a world that’s built for me in so many ways. I’m already aware that my limits are lower than many of my peers. I wish they were higher. There are so many things I’ve always wanted to do, and I don’t know how to overcome the anxiety that would be involved in either attending events or exploring a new experience.
I want to encourage those who have loved ones on the spectrum to understand your loved one wants to be involved. We want to be included. We have the same needs and desires that you do. We just have different ways of getting those needs met at times. Find creative ways for us to be involved and ask us to brainstorm with you. Scolding or chastising us for having the limits we do isn’t helpful and is detrimental to our self-esteem and sense of self. We know we’re different from others; we don’t need to be reminded. To my friends who are on the spectrum, I encourage them to do their best to create an environment they can thrive in. I find spaces and times to spend by myself after work and it’s helped me stay sane. There are tools and resources to help you self-soothe. If someone tries to make you feel bad for taking care of yourself, they’re not a friend.
I’m quite fortunate that I’ve found my rhythm for a year or two now. I’m now finding the balance between self-regulation and compromising with important people in my life so their needs are met as well. If you’ve found ways to soothe yourself, I’d love to hear them. I hope and wish for a world where taking care of oneself is viewed as important as any other part of wellness.
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