How I Live My Life as an Adult With Sensory Processing Disorder
Just because sensory processing disorder (SPD) is not a classified disorder in the Diagnostic and Statistics Manual of Mental Disorders (DSM) does not mean it is not real, especially to me. Rather than defining SPD it may be easier to talk about some of the symptoms. People with SPD may become over-responsive or under-responsive to their environment. People who are under-responsive to their environment may not notice their surroundings. Under-responders may fall and not notice it, or not feel heat or cold. On the other hand, there are people like me who over-respond. I used to be described as a fussy baby, then extremely picky child and now just awkward at times. I’m inspired to share my story in the hope it can help other people and families know that despite having sensitivities, people with SPD can learn to cope with their body and environmental challenges.
As a child I was a complete terror. I screamed all the time. I hated trying anything new. I refused to go to anywhere with “smelly carpet.” I would become overstimulated if my food items touched each other. I would only wear all cotton outfits. I would absolutely not eat anything that was white, brown, or meat. I craved carbohydrates and fried foods. As a teen I gave up almost all food except potatoes, and had serious consequences like losing my hair. I never outgrew some of my childhood issues and have decided that it might be useful to share some of my experiences, so parents know that their kids will grow up and everything can eventually be OK. I’d also like to share some of my sensory diet for those who are newly discovering SPD as adults.
Food is an overwhelming issue that has shaped most of my adult interactions. I’ve given up on trying to explain why my foods can’t touch, why dressing cannot be on my salad, and why anything white on my plate is disgusting because really, it makes no sense. If you give me a Subway sandwich with veggies, no problem, I will just pick everything right off of it. However, give me a Subway sandwich with mayo and I will throw it away. In my brain, you can’t pick off the disgusting scent of mayo. Even if I try to wipe off any sauces, I gag when trying to eat food that has previously touched a sauce like mustard or mayo.
My relationship with food has improved over time. However, it is a constant battle. My kind and thoughtful husband will cook dinner and forget about my issues. He will prepare a dinner and throw on a seasoning that we have not discussed or tried before. Believe me, I notice it is there first by smell, then the texture, and then finally the taste. Because I’m an adult, I am able to try new foods using positive self-talk (e.g. Just try a bite and see if it’s as horrible as you think it will be). Honestly, I’m not really able to accommodate new flavors. I smell things most people don’t. I feel things in my mouth that most people ignore. My taste sensations are over-developed compared to others. I also have low muscle tone in my mouth, so I don’t like to chew tough foods or crunchy foods like pretzels. I think that is probably the reason I did not like food as a child; I often gagged on food when I couldn’t chew it properly.
My second sensory processing challenge is my sense of touch. When people want to give me a hug they need to ask first. Most of my friends know that I’m not a hugger unless you ask… I don’t mind hugging you as long as I’m in charge (typically a side hugger type of girl). If you’re going to come into my space, I need to be prepared. On more than one occasion, I’ve nervously looked at someone who tapped me on the shoulder because I wasn’t prepared for the touch.
There are several other challenges I just avoid, like leaving the ground. I’m happy to push my daughter on the swing, but hate going on them. I have a gravitational insecurity which stems from my vestibular (sense of movement) system not working properly. Additionally, I will only drink warm drinks. I cannot tolerate anything cold except ice cream. Lastly, I only wear soft materials and will avoid wearing anything other than soft cottons.
The good news is that I’ve come up with a sensory diet that works for me. A sensory diet for an adult looks much different than one for a child. Since my sensory system is mature, I work to provide myself both relief and accommodate my personal sensory system. I’ve tried a variety of strategies and use a few tools I would like share with other adults who have SPD. Most people only talk about children who cannot cope with their sensory systems, and never think about what happens after the kids grow up. Unless you are a therapist or know someone who also has sensory processing difficulties, you may wonder what to do when your body feels all out of control.
The best tool I have found is positive self-talk. Whatever the trigger is, there is typically something reasonable I can say or do that will calm me down. I literally tell myself that a new seasoning will not harm me, or that if I try it and do not like it, I can eat at home later. This feels like a bargaining agreement with myself.
A second tool I use is creating a routine to help maintain my sensory systems. Routine and predictability are very important to me. I use the same products, like lightly scented face wash or goat soap instead of glycerin since it feels different on my skin. All of my shoes are the same brand, and shopping on Amazon is my friend since it helps me remember exactly which products I like.
Lastly, I use heavy work (e.g. exercise). I swim, bike and run. I’ve tried a variety of heavy work/exercises like yoga and enjoy activities that make me feel tired versus relaxed. You almost never find me sitting down until the end of the day. I tried activities like meditation and progressive relaxation, but they didn’t work for my body. I have also tried deep tissue massages, but I did not like a stranger so close to me. My key to success is making sure I get at least 30 minutes of movement four to five times a week!
On any given day I might also use a variety of other tools, such as a weighted blanket, scented lotions, or preferred foods like chocolate to calm down. Growing up with SPD has been a challenge for me as well as everyone around me. My parents will tell me stories about how I yelled and screamed until they were asked to leave restaurants. I didn’t seem like an unhappy kid, but was frequently upset for mysterious reasons. It was hard to explain to my parents that I could not stand the skin on my chicken nuggets. I had to pick it all off before I could eat.
As an adult looking back at the life I lead now and my childhood, I cannot imagine growing up any other way. SPD does not define me, but it does define how I live my life. I have learned to work around it, and am hoping my friends and family learn to accept me for who I am, instead of who I am not.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo by Wavebreak Media.