Reason 1: SPD is a complex neurological condition, not just an over-sensitivity to stimuli.
Updated: Mar 6
The primary thing that I would love for people to understand about Sensory Processing Disorder (SPD) is that it is not as simple as, My kid is extra sensitive to tags on clothes or doesn't like loud sounds. SPD is a complex neurological condition where the brain is actually wired differently than typical children, in the same way that people with autism and ADHD have different gray matter and neural links within their brains.
Like many things, sensory issues exist on a normal bell curve. And there are "typically-wired" people whose over-sensitivities are outside of that bell curve. Maybe a person has a very sensitive sense of smell and gags around certain foods. Or really can't stand the feel of wool on her skin. That is indeed a sensory challenge, but not necessarily a disorder. A disorder occurs when two things happen: sensory issues are so severe that they impede normal development and make it nearly impossible to get through daily life (getting dressed, basic hygiene, eating, learning, transitions, going places outside of your home, having relationships, communicating, or all of the above).
Unfortunately, even other blogs that try to promote understanding about SPD and well-researched articles in reputable publications such as the New York Times, tend to focus on the easiest to recognize of our senses - sense of smell, sound, touch, and taste. The examples or anecdotes in the writing focus on a single over-sensitivity, rather than describing the complex picture that emerges when a combination of the eight senses and sensory systems are going haywire at the same time and potentially in different directions.
I often encounter sentences like the following:
"Things like bright lights and loud noises can trigger meltdowns beyond a person’s control. These difficulties can lead people to seek out sensations, too — like wanting to be hugged." (Fact Sheet on the Understood Blog)
"Most youngsters with these diagnoses (ADHD and Autism) react strongly to certain
sounds, textures or other sensations — or appear unusually numb to sensory stimulation. They may gag at the mere whiff of common smells, or cry out when
touched." (2007 New York Times Article)
"Sensory processing disorder, or S.P.D., is a condition in which the brain receives and reacts to certain stimuli — such as smells, sensations, sounds and tastes — in a dysfunctional way." (2019 New York Times Article)
"Elias, Xander, and Cal all experience extreme reactivity to tactile, auditory, or visual stimulation – a condition known as sensory processing disorder (SPD). Tactile triggers that torment kids with SPD include tags in shirts, woolly sweaters, socks, or an accidental shoulder brush during preschool circle time." (University of California - San
So, I get that sometimes you have to introduce new, complex ideas in small, digestible bites (I had to explain my dissertation to other humans, after all), but this oversimplified framing easily leads one to think, Oh, that parent just has to buy some clothes without tags or get some headphones for loud places and everything will be fine. In fact, that's what I thought too before this unexpected journey began.
Little did I know that there were "260,000 different patterns of expression of SPD" and that a subset - or all of the eight sensory systems - can combine in different ways to make daily life nearly impossible. Interestingly, this includes three bodily-based sensory systems that are often overlooked: the proprioceptive, vestibular, and interoceptive systems. The first system controls how you feel pressure on your body and your orientation in space. This system, "senses the position, location, orientation, and movement of the body muscles and joints". The vestibular system controls balance, while the interoceptive system allows you to feel sensations that are inside of you, like hunger, thirst, and needing to use the bathroom.
Think about that all that for a just a second. Imagine not knowing where your body starts and stops, where it is in relation to other humans, and to the ground you stand on. The body is the place where you experience your internal life and understand your self in relation to the world and others. This is primary. The body is where the psyche lives (p. 115)! I am no psychologist, but I don't imagine that as a child you can develop a "self" and relate it to others in a healthy way if you don't know where it is housed and the contours of the vessel that separates you from the outside world.
So how does all this actually work in real life? Let's take the case of my son. Although certainly not representative, the complexity and counter-intuitive nature of some of his sensory challenges helps illustrate what it can be like for child who has a true disorder that disrupts daily life and development. Like the kids in the examples above, T is over- responsive - to sound, visual stimuli, taste, smell, and touch. At the same time he is under- responsive in his proprioceptive and vestibular systems and has challenges with sensory integration. This means that he doesn't always even recognize where sensory input is coming from, he is just experiencing a constant "neurological traffic jam," which is disorienting at best and panic-inducing, at worst.
Let me provide a single example of how this affects his daily life, because again, I already wrote a dissertation. Take mealtimes. Breakfast, snack, lunch, snack, and dinner. Five times a day, T's over-sensitivity to smells, tastes, and textures causes him to have an immediate negative reaction to any unfamiliar foods put in front of him. His reflexive response is to turn his whole body away, push the food away from him, and sometimes flee the table and run to a different room. This is not a rational thought process or a controlled behavior, his body goes into fight or flight mode. To stay seated at the table and even be in the same room as certain foods (mushy, wet) takes lots of preparation and T must exert enormous self-control and cognitive effort to stay seated. Sometimes when he is sitting across from my one-year-old eating a banana, he wears a baseball cap to shield his eyes from the offending mush, so that he won't start dry heaving. Poor dude is not being "picky", rather his body is (incorrectly) perceiving these foods as dangerous and life-threatening.
Through months of feeding therapy and lots of work with the use of an Ipad and other supports, like "learning bowl" he can spit into, T can now sit at the table without fleeing. But the next set of challenges is introduced by his under-sensitivities in the body systems, which cause a lack of balance, poor postural control and core strength (vestibular), and understanding the sensory input of his muscles and joints (proprioceptive). Right off the bat, T is exerting enormous effort to hold his body upright and in the chair, a scene that often includes lots of squirming and one leg down on the floor, as a kick stand.
Now, he is in the chair, and so this should be the straight-forward part where he has to get the food from the plate into his mouth, chewed up, and down his throat. Seems like it should be simple, right? Wrong. Because the muscles in his jaw, lips and tongue are under-responsive (proprioceptive), T easily loses the food in his mouth once it breaks down and gets mushy. He often gags or spits it out. He simply won't eat food that doesn't start out as crunchy and dry. Further, his tongue is sort of lost in there too because it doesn't know what is doing against his teeth or roof of his mouth. This perfect storm of challenges leads him to almost choke at unexpected times, which scares the shit out of him.
Now, imagine you were this kid and this type of scene occurred at every meal time, day-after-day. You would start to panic any time you were near food and refuse to eat anything but the foods your body feels are "safe". And on top of that, your parents likely wouldn't understand what was going on, and would think you were simply behaving poorly. So they would try to force you to sit in your chair that you often fall out of, in front of food that you literally can't eat. Now, your new normal, is that your body goes into fight or flight mode every time you are near food. The anxiety around eating makes your sensory issues more acute, which makes you even more anxious. Eventually you shut down and stop eating altogether.
Ok, New York Times, I get that you have a certain word count. And that throngs of people probably are not clamoring to know the ins and outs of SPD in this current news moment, but it would be cool if you guys could mention the bodily sensory systems next time and just emphasize that this is a neurological situation, not just a sensitivity. Thanks, appreciate it and feel free to call me if you have any questions. ;)
ps. The boys in these pictures (except the one with the red winter hat) are not my son. They are from a free image downloading site. Which I hope uses informed consent.