Autism and Wellness Week 3: In Their Own Words

This month’s wellness series has so far focused on building awareness and fostering acceptance to promote wellness in the Autism community. But, as is the case for any group, it is often most helpful to hear directly from the lived experiences of those who are members of that community. So for this week’s Autism Acceptance wellness post we are sharing an article in which different folks from different places on the spectrum share their experiences of what it is like to navigate wellness in a world that often runs contrary to their ideals and needs. This piece was written by Marianne Eloise in collaboration with Dana Glauser, LCSW, and Anna Harris.

In my ideal world, I’d live inside a spa—only leaving to buy necessities like snacks. In my current, more realistic life, I put a lot of effort into making my bedroom and bathroom feel a sanctuary. Every aspect is designed for maximum peace and comfort. Think: cotton sheets, scented candles, warm lamps, and new products. Every single day I make sure to spend as much time alone in these spaces as I can, diligently following a nightly routine of stretching, bathing, acupressure, and skincare in an environment designed just for me. While all of these behaviors fall under the overused buzzword of “wellness,” for me, as an autistic person, they’re necessary.

Autism spectrum disorder encompasses many ways of experiencing the world, but something we all tend to share is sensory processing issues.1 This can mean extreme sensitivity to some stimuli, like certain textures or sounds. We struggle to process things in the same way someone else might, which can lead to sensory overload and meltdowns, but we’re also driven to seek out positive sensory experiences to enjoy with a unique intensity.

In recent years, tools designed to help keep autistic people stimulated—like fidget spinners—have been assimilated into everyday life. More recently, weighted blankets, designed to help prevent autistic meltdowns, have found their way into more common usage for everything from anxiety to feeling nice. While this could de-stigmatize the use of these tools, it also makes it difficult to explain why you need something that everyone else finds to be a fun novelty. Similarly, a cultural fixation with the ever-growing industry of “wellness” has made it so the significance for those who need curated sensory experiences to function is lost.

Autistic people need structure and often engage in repetitive behavior, so we thrive on routine. Tom, 35, has a number of elaborate sensory rituals. He owns 10-15 different types of lighting which he uses along with a projector or VR while he’s in the bath every day. “A comfortable environment filled with the kinds of sights, sounds, and smells to help you relax can go a long way in allowing a neurodivergent person to focus without distractions and triggers. It gives us a level playing field to think and emotionally respond to things in a much more natural way,” he says. Many autistic people have dopamine processing anomalies,2 but by building up these coping mechanisms, Tom creates an environment that makes it possible to function: “Our bodies don’t naturally react well to a lot of the stimuli in the world, but these are things we do react well to and have control over. It makes sense for us to seek them out and work them into a routine to improve our general moods,” Tom says.

A cultural fixation with the ever-growing industry of “wellness” has made it so the significance for those who need curated sensory experiences to function is lost.

I wasn’t diagnosed until I was 27—but growing up, I had frequent meltdowns and burnouts as a result of overwhelming stimuli. I didn’t understand why everything felt so bad. All I knew was if someone came near me with an itchy sweater I would scream, lashing out at them and insisting that it hurts. That’s how it felt, and how it still feels to me: a wrongness, an itch that is so deep it burns my skin. I will not eat anything outside my limited selection of “good” foods and I have extreme reactions to noisy environments. The only thing that really ever felt good was swimming. I knew once I was underwater, the world became silent and dark and my body was wrapped in water. I didn’t want to get out.

As I got older, I began to understand the link between my senses and wellbeing. I gained new awareness that I was different and started to orient my life around my sensory needs. For example, I only wear certain materials and comfortable clothes, which means most of my wardrobe is loungewear and the rest consists of the same American Apparel skirt in five different colors. I only surround myself with colors that feel “right,” struggling to look at anything bright. My home is quiet, I eat what I want, I wear earplugs and an eye mask to sleep, and I avoid situations I know will send me into meltdown. As a result, I have a much easier time being who I am. In the absence of these negative triggers, I fill my life with carefully curated sensory experiences to put me back in touch with myself. 

Lindsay, 37, was only recently diagnosed as autistic but has always known she had different sensory needs, and created rituals to fulfill them. “I got really into wellness for a while but it didn’t feel like a ‘spiritual’ expression for me. It felt more like a way to understand and manage the unique energy I had that I didn’t totally understand,” she says. On a daily basis, Lindsay “stims,” a term for the movements that autistic people do to seek stimulation. She uses tools like Chewlery, adult jewelry that you can chew on, fidget toys from Black Girl Lost Keys and handmade stimulation toys from A Sense of Self. Being able to use these tools is integral in preventing Lindsay from shutting down. “I find it pretty strange that ‘wellness’ stimming is seen as socially acceptable and ‘autistic-type’ stimming is not,” she adds.

What is Stimming?

A self-stimulatory behavior that is marked by a repetitive action or movement of the body.

Lindsay puts her wellness rituals into two categories: “preventative” (things that allow her to start with a good sensory baseline) and “rescue” (things to be brought back down from sensory overwhelm). Her preventative behaviors include a morning tea ritual. The movements of scooping and pouring, the way the tea smells, and the feeling of steam put her in a good place. Her rescue behaviors include baths, lights, and candles. “The salt bath is usually unscented salt. I like to soak in the water and enjoy the splashing water sounds. It’s calming and centering,” she says. She also uses a dim-colored light in her bedroom and sound baths to recover from meltdowns. Without these behaviors, Lindsay says she either has a meltdown or just feels “off.”

While these rituals are likely to improve anyone’s mood, they can be essential to autistic people’s wellbeing. We may not have interoception, which is the internal sense of what a person feels or what they need.3 Throughout the day, without intervention, I will forget to eat, drink, or even go to the bathroom. My body feels completely separate to my brain, and I don’t even know that I’m in pain until it’s too late. While I can’t fake having a sense of interoception, what I can do is have time daily to deliberately get in touch with my body. I force myself to finish work and I go to do some stretching and yoga in a dark room with a nice-smelling candle, drink lots of water, and have a long bath. Without that routine, I’m much more likely to burnout, lose the ability to speak, or have a meltdown (if not that day, then soon). 

What Is Interoception?

Interoception is the perception of sensations from inside the body and includes the perception of physical sensations related to internal organ function such as heart beat, respiration, satiety, as well as the autonomic nervous system activity related to emotions.

Chloé, 23, is an autistic influencer and advocate who goes by Princess Aspien. Her daily sensory rituals are diverse depending on her needs. “When I need more input, dancing, singing, and stimming help me to gain that,” she says. “When I need less input, allowing myself to retract from the world is incredibly vital for me to be able to continue to function, be settled, and be happy.” Without the ability to sensory seek in a way that she needs, Chloé shuts down. “Allowing myself both the time and understanding of what I need is absolutely vital to me as a neurodivergent person,” she shares. However, she also finds joy in her sensory-seeking activities. “As a neurodivergent person, my body needs more help with sensory input than someone who’s neurotypical,” Chloé says. “It’s so important we reduce that stigma both within our own community and as a society, and create the understanding that sensory differences and sensory seeking are a normal, vital thing.” 

Tom has found that by occupying and overwhelming all of his senses with good stimuli, he can take his mind off everything else and be present: “Our external environments have more of an effect over us in getting to a place of internal calm,” he says. Basically, the same principles as mindfulness or wellness for anyone apply, but to an extreme extent. While these things reduce pain and the risk of meltdown, they are also incredibly enjoyable for us. “These behaviors activate our senses and our bodies respond to them more intensely, so we are drawn to them,” Tom says. 

Conversations around sensory-seeking behaviors are often negative and geared towards parents to make their kids stop “stimming,” as it’s often considered “inappropriate” or “embarrassing.” What people miss is not only the necessity of these behaviors, but how much joy and comfort can be found in them. Without the ability to control my own sensory experience, like Chloé, I do shut down. But exploring new ways of feeling good, whether it’s through bath products, new candles, massages, acupuncture, playing with my dog, or swimming, is the baseline for both my wellbeing and my happiness. Autistic people exist on a spectrum of extremes, but for every painful, difficult extreme, there is something that we enjoy so much more than someone else can.