Ask any Occupational Therapist, and they will tell you that Sensory Processing Disorder (SPD) is a legitimate diagnosis for people who struggle to integrate sensory stimuli into daily experience. Ask an M.D., and they will tell you SPD is not an official diagnosis (it is not recognized in the DSM-5), but a cluster of behaviors associated with Autism Spectrum Disorder (ASD) and/or Attention Deficit Hyperactivity Disorder (ADHD). Ask me, and I will tell you that SPD is a royal pain in my ass.
Whether or not doctors are prepared to recognize the existence of sensory dysfunction as a solid medical diagnosis does not matter to me. What matters is the way in which sensory dysregulation affects my life and my family.
People with SPD find it difficult to process all of the information received by the brain from myriad senses, and as a result, become either hyper or hypo-sensitive to sensory stimuli. In short, people with SPD are compelled towards certain sensate experiences, while avoiding others. This neurological condition, whether affirmed via medical practitioners or not, interferes with and diminishes quality human existence.
Both of my children struggle with SPD, and honestly, so do I.
All three of us exhibit a fundamental trait of the SPD condition. We all undergo extreme anxiety in anticipation of or during less preferred sensate experiences. When subject to sensory overload, our brains incite the fight, flight, or flee response. In my children, this often leads to meltdowns that seem disproportionate to the inciting event. In myself, this leads to a flight response (I typically default to sleep).
The types of sensory experiences that lead to such responses vary between us. For my son, he is most anxious about food. He eats the same meals daily, and resists integrating foreign foods into his diet at all costs. This induces severe anxiety when faced with unfamiliar experiences, like school events or birthday parties, because he worries over whether there will be food he can eat. We have learned to work around this by teaching him to say “No, thank you,” when offered new things, and we make sure he fills up before heading to any social events. The issue of diet is my son’s most prominent struggle with SPD, but he suffers from others, as well. He is extremely sensitive to bright light and hot temperatures, and he seeks physical stimulation through jumping, crashing, and wrestling activities.
My daughter, likewise, evidences nutritional dysfunction, but her symptoms present in a nuanced manner. She tries new foods, at times, and she is not repulsed by textures, smells, and flavors like my son. However, when suffering from overwhelm related to other sensory experiences, she seeks regulation through dietary restriction. All of a sudden, the foods she loves are “yucky,” and I’m at a total loss over how to replace them. This stresses me out, beyond belief, because it is all too reminiscent of my experience with disordered eating. Like her brother, my daughter also seeks physical stimulation. She begs for cuddles, back scratches, and she seeks non food textures to suck or chew.
As a child, my symptoms presented much like my son’s, with regard to food. I ate a regular diet of foods day in and day out and experienced extreme anxiety when confronted with certain textures and smells. I was withdrawn in unfamiliar places, and adults labeled me shy, although now, I suspect these behaviors were more likely the result of over-stimulation. As an adult, I am still repulsed by certain foods and smells. I can’t even kiss my husband when he has recently eaten, unless I ate the exact same thing and already have the same flavor in my mouth. However, the sensate experience I detest most is when I’m part of a large crowd of moving people, like a crowded shopping center at Christmas or a street festival in a cramped city neighborhood.
What frustrates me, even more than the presentation of SPD symptoms, is the lack of understanding–the lack of awareness–of others who encounter us. People find these quirks odd, disconcerting, and often offer me unsolicited advice, outlining all the interventions they would initiate were they in my position.
I’ve tried most, to be honest, and then some. My children were in Occupational Therapy for the greater part of a year, and while it did mitigate some of the issues, it didn’t eradicate the symptoms. I am beginning to come to terms with the fact that nothing will. There is an ebb and flow to symptomatic presentation, and just when I feel we’ve made progress, something sets one of us off, and a major regression ensues. It’s unpredictable, unforeseeable, and the only thing I can do is weather the storm.
SPD is a daily struggle. We don’t want to be this way. We want to be normal.
My only hope is acceptance. I must accept myself, as well as my children, dispensing love and grace in spite of the tumult.