Updated: Mar 21
It’s complicated. Your child is outperforming peers in some areas, yet somehow months or years behind in others. They can be so particular one minute, then completely unaware the next. Every day it’s too hot, too rough, too yucky, it’s just somehow never right. They are trying. You are trying. Yet it’s like wedging that puzzle piece into the spot that it totally looks like it is supposed to be in, but it’s not fitting.
You ask your friends and family if they notice anything. They give you that acknowledging helpless look. You ask the pediatrician and they tell you to wait for them to outgrow it as they gently tell you to step away from the internet and stop the endless midnight researching. Yet you feel the space between you and your child growing and it’s scary.
Then comes a diagnosis of Sensory Processing Disorder (SPD), and you realize that the one puzzle piece actually belongs to a completely different puzzle that is much more complex than you could have imagined - and you’ve only just begun.
You are not alone. Sensory processing issues have been reported starting at 1 in 20 or even as high as 1 in 6.25 children in the US general population (Ahn et al., 2004; Ben-Sasson et al., 2009). A more current study in Finland found the prevalence of sensory abnormalities to be around 8.3% in an epidemiological population of 8-year-old children (Jussila et al., 2020).
Children with SPD can have difficulties with processing sensory input from seven main sensory systems; tactile, auditory, visual, olfactory, gustatory, proprioceptive, and/or vestibular systems.
Received via touch on any external area of our body with skin, and like a bodysuit map, every area can have differing preferences. A tag on the waistband may not even register, yet you’ve had to cut every tag out of every shirt for years.
Sound being processed by our ears and the auditory part of the cerebral cortex in our brain. Noise canceling headphones can provide a volume control option to take the edge off the exhausting days where your loved one’s system is running on fumes after being completely burnt out on processing the many sounds they encounter throughout the day.
What we see, which is processed by our retina and travels through to our primary visual cortex. Much like the strong opinion of an interior designer, lighting really impacts a space and how comfortable you can get can be assisted via a dimmer switch. Rose colored or tinted glasses can possibly help with photophobia induced migraines.
Responsible for the odors we smell which get processed by the olfactory cortex. It is in total cahoots with our gustatory system by facilitating our perception of flavors in the foods we eat. Olfaction is known as one of our most powerful senses with the hidden super power of igniting memories as well as influencing our mood and behavior.
Received by our taste buds, and in the simplest sense can be perceived as aversive or pleasant. One can love the look, smell and taste but hate the mushy or crunchy texture. It’s interactions between sensory systems like this that make eating a real battlefield. High quality supplements in candy like gummy forms can allow you rest a little easier knowing the intake of vitamins, minerals and nutrients has at least been ingested.
Like a web of reflex and central communication networks, nested deep within our musculature and joints. Pressure is the key to this system, deep, strong, compressing forces can sometimes generate a calming sensation, much like how we feel when getting a hug. When the social interaction requirement of an actual hug gets in the way, options to deconstruct this type of stimuli to achieve self administration of deep proprioceptive input via homemade lycra body suits, weighted blankets, or even purchasing fancy devices, such as the Steamroller®, to provide a child with a sense of control and a means to increase independence in self-regulation.
Finally, this is how we perceive movement. The main components of the system are in the inner ear in a system of interconnected compartments of the vestibular labyrinth. This system allows us to process motion, perceive of our head position, and provides our sense of spatial orientation. It feeds into our motor functions that help us keep our balance, stabilize our head and body while moving, and maintains our posture. Hanging upside or inverting our head downward provides a very strong sensory input to the vestibular system which for some can be organizing and a good option for preparing to engage in non preferred activities.
Although the seven main sensory systems mentioned above get a lot of attention, there is an often-neglected eighth sense, called interoception...
Our ability to sense temperatures, pain and other body signals, such as hunger, thirst or the need to go to the bathroom. We can be neutral, hyporesponsive or hyperreactive to these internal sensors. In a study titled “In our own words: The complex sensory experiences of autistic adults”, 55% and 42.5% of the participants respectively identified as being hyperreactive to hot and cold temperatures. 47% of the study’s participants identified as being hyperreactive to shifts in weather and 35% to physical pain. Many of the participants’ reported being hyperreactive to temperature extremes and found they can struggle when they feel too hot or too cold. As one participant stated “heat can be utterly unbearable, especially because it interferes with some of my other sensory preferences such as pressure seeking. Even in ordinary warm summer days around 20C/ 68F, my functioning is impaired and I feel discomfort. During a true ‘heatwave’ I can be essentially in a permanent state of shutdown. This sensitivity extends to hot water, as I have an immediate recoil tendency upon entering water even approaching scalding hot.”
Alternatively, 30% of the participants identified as being hyporeactive to physical pain,15% to hot temperatures and 12.5% to cold temperatures. Many of the participants reported their experiences of being hyporeactive to pain and viewed themselves as having higher pain thresholds compared to others. Additionally, the participants also described their experiences of being hyporeactive to temperature and may take additional time to notice if they feel too hot or cold, or if they touch something that is very hot or cold. Participants noted “I have failed to notice broken bones. I went hiking the day after breaking my foot and walked to school the day after focally fracturing my shin” as well as “I don't notice until 'too late' that I'm too cold [or] too hot.”
SPD individuals are considered to have challenges in their sensory integration (SI), which is the mechanism the nervous system uses to process and organize sensory stimuli from the internal or external environment, to permit adaptive functioning (Ayres’, 1972). These deficits impact our adaptive behaviors, coordinated movements, learning, playfulness, reading, and arithmetic abilities (Parham, 1998; Bundy et al., 2007).
While people can all share a diagnosis of SPD, their behavioral profiles of sensory processing are just as unique to the individual as fingerprints.
Sometimes the best way to gain understanding of another individual’s daily experience is to try and walk in what you imagine to be their sensory systems. We all have our own complex preferences that can generate a multitude of emotional responses like feeling irritated, grounded, disappointed or thrilled, but when the integration of our senses prevents us from participating in desired activities, or assist us through completing non preferred tasks, support and skilled guidance from an Occupational Therapist could be a total game changer in terms of ameliorating difficulties, to ultimately facilitate independent functioning. Intervention strategies (based on clearly identified sensory preferences and needs), a sensory diet and therapeutic treatment targeted towards improving self-regulation (via coping mechanisms to facilitate independent functioning, despite sensory disruptions), is often the beginning stages of crafting a client-centered plan of care and treatment.
Together, we can find strength in a unified effort, oriented towards compassion, empathy and understanding of one another’s unique experiences, to persevere through challenging times and increase the frequency of positive experiences, to build a sensationally, joyful existence.
By Genevieve Engleman MS, CFWE, OTR/L
Genevieve Engleman is an Occupational Therapist providing therapeutic support, built upon empathy, compassion and non-judgmental consideration of everyone's unique situations in life. Her private virtual practice (TheRemoteOT.com) offers affordable, client-centered, custom priced treatment plans which span across the lifespan from the NICU to geriatric populations and every age in between. She is a real nerd at heart and loves expanding her knowledge through the completion of way too many continuing education courses to stay abreast of all the latest intervention strategies and research. She has achieved specialty recognition from NBCOT in pediatrics and orthopedics for her studies.
Genevieve comes from a vast background in the healthcare system from Miami to Maryland and previously served as the Clinical Executive Associate for a large statewide practice in Rhode Island. She is originally from Canada and believes quality healthcare is a human right and structures her private practice to prevent cost from ever being a barrier to quality healthcare. She enjoys attending bluegrass and folk music festivals with her husband, Thomas and three children Hank, Beau & Eden.