At the age of three, Nicholas would often attempt to strip himself naked in public, appearing overwhelmed by the feeling of his clothing against his skin. He never crawled as a baby, and he did not walk until he was 18 months old. From toddlerhood, he held his hands over his ears whenever he went outside because the sound of the air was too overwhelming for him. He would burrow himself into small, tight spaces because he needed the squeezing feeling of a tight hug to help him calm down. Bright lights, including television, were overstimulating to him, which meant that he jumped around, sometimes injuring himself during his favorite cartoons. He would not allow himself to be submerged in water as a baby, and he was never able to comfortably tolerate water on his head or face. He would gag, and sometimes vomit while attempting to eat foods that did not have a crunchy texture. He was clumsy, often tripping and falling for no apparent reason. He had an extremely high tolerance for pain, to the point where he did not cry when he broke his arm. He would attempt to leap down flights of stairs because he had absolutely no sense of danger. As his mother, if there was only one single thing I needed to understand about autism, it was sensory integration.
He was 6 when he began receiving Occupational Therapy (OT) services through his medical plan. I had no idea what OT was, but I vaguely understood that it was supposed to help him focus and become more aware of his surroundings. If this meant fewer injuries and better coordination, then I was willing to do whatever it took to get him there.
“Sensory Processing Disorder” and “Sensory Integration Dysfunction” both referred to as “SPD,” were two different terms for the same condition. The condition was prevalent among individuals with autism spectrum disorders, but could also occur in individuals without autism.
The terminologies varied, and the science was not something that any of his doctors knew enough about to explain to me. It took months of questions and discussions with his occupational therapist to begin to understand the elements of the disorder, and how it related Nicholas’s limitations and abilities.
Sensory integration is the neurological process which compiles information from the senses and turns it into appropriate behavioral responses.
To explain, I will use a silly but effective example. Imagine, if you will, sitting in a uniquely designed car with 3 strangers. Imagine that the vehicle is designed to require that each person take on a different task in the driving process.
You will be the eyes of the operation. You are the only person with ability to see through a small windshield, and you are the only one with a view of the rear-view and side-view mirrors. The person to your right is solely responsible for the steering wheel. In the back seat are two other individuals, one is solely in control of the ignition, and the other is solely in control of the brake pedal. And what about the gas pedal? The gas is powered by a sensor which measures the stress level within the vehicle. The car speeds based on an increased tension level, and slows based on decreased tension.
Now, let’s imagine that this unique four-driver vehicle is entered into a race against 20 traditionally equipped single-driver racecars. The track is lit, the crowds are roaring, and the signal is given. Let the racing begin!
The tension goes up, and the car is off like a rocket. You see the car veering out of control, and yell “ignition off!!” The person sitting in the ignition seat stops the vehicle. Cars begin to soar back around, speeding toward your vehicle from behind as they begin their 2nd lap, and you feel compelled to scream “ignition on,” causing the vehicle to jerk forward with intense force. The person responsible for the brake pedal panics, breaking abruptly, causing the car to spin out of control. The car scrapes a barrier wall and recovers, picking up speed again with built tensions, and you yell, “turn right,” “turn left,” “speed up,” and “slow down,” as the other people in the vehicle argue, scream and panic, fearing for their lives. Your instructions are correct, but without a way to gage just how fast, how slow, or at what angles to turn the wheel, tension rises, and the car crashes over and over again for the entire race.
How terrified would you feel in this moving vehicle? Could you find your sense of calm to slow the vehicle acceleration? If you found a way to decrease your own tension level, would you be able to simultaneously calm the tensions of the other people in the vehicle, while also dictating appropriate driving instructions?
If you sustained injuries, would you want to drive the vehicle again? Might you be fearful and on edge? Would you feel panicked at the mere sight of the vehicle? If someone tried to force you back into the vehicle the following day, would you cry? Would you scream? If a family member placed you in the car against your will, might your sense of terror become so overwhelming that you might hit or kick people around you, fearful of the sensation of having no control? Could you imagine being forced into this terrifying situation every day for the rest of your life? Would the mere memories of the experience haunt you?
It is with this understanding of the power of this fear where I would like to distinguish the difference between a typical tantrum and a sensory overload “meltdown.”
A tantrum, as I am defining it, is an intentional act of defiance, resistance, or anger, as a result of something that is not in a child’s control. If a “tantrum” occurs because a toy is taken away, the child’s tantrum would likely end at the moment when the toy was returned to them. “Tantrums” generally last a few minutes, or sometimes longer if a child is strong-willed and/or has a strong sense of entitlement about the issue.
A “sensory meltdown,” as I am defining it, occurs as a result of overwhelming fear or panic, in response to something that is going on internally. Generally, if something invokes a sensory overload “meltdown,” it can last significantly longer, sometimes hours. There is almost nothing that will console or calm a child who is having a sensory overload meltdown. Adrenaline is rushing, the child’s nervous system is raging, and the child’s thought process is completely overloaded with terror. Nothing you can say or do will help that child until after the child has begun to drain out the excess energy, eventually calming down enough realize that there is no more eminent danger to fear.
Nicholas often becomes dysregulated and fearful in sensory situations which overstimulate him. Some examples of these situations include eating, showering, walking through crowds of people, and tolerating loud noises. These activities often cause him to become panicked, and sometimes bring him into a sensory overload “meltdown,” which usually presents as an episode of aggression, lasting hours, often accompanied by bursts of strength beyond his normal capabilities.
Nicholas’s nervous system functions much like the multi-driver vehicle. He looks like any other child on the outside, but there is always a battle going on inside his little body, and he does not know how to make sense of it. He lacks the ability to compile and apply his sensory functions effectively enough to do so without fear or injury. Sensory tasks, as well as anticipation of sensory tasks, can be dreadfully terrifying experiences for him.
For Nicholas, there were 8 separate sensory systems sending signals to his brain. Each sensory system was like an individually functioning driver in his body. All of these systems were out of synch.
There were the five well-known sensory systems of sight, sound, smell, taste, and touch. The visual system was how he processed motion, color, and movement. The components of sound, which included volume, noise, silence, and language, to name a few examples, were processed through his auditory system. The olfactory system, known as the sense of smell, provided him with input regarding his environment. The odors of a burning fire, the stench of rotting foods, the scent of fresh air, and the smells of nature were some of the small bits of information processed by the olfactory system. The gustatory system, known as taste, was essential in determining the difference between harmful foods and safe foods. The tactile system, known as the sense of touch, gaged textures, pressures, temperatures, and pain.
In addition, there were two key sensory systems which I had never put much thought into, prior to my understanding of Occupational Therapy. These were the vestibular and proprioceptive systems.
The vestibular system determines balance and orientation in space. When properly functioning, the vestibular system allows the liquid in your inner-ear to tell your brain when you are laying down, standing up, or spinning in circles. This information prevents you from falling over constantly, leading you to balance yourself by using a correcting motion.
The proprioceptive system senses the relative position of neighboring parts of the body. It incorporates elements from muscle receptors throughout your body, also working closely with the vestibular system, to allow coordination to complete physical tasks.
The eighth system, referred to as interoception, is a system that detects responses related to perceptions of one’s own body through the nervous system. This includes hunger, heart rate, respiration, and elimination.
Sensory Processing Disorder is a neurological disorder where sensory input, either from the environment, or from the body, is poorly detected or interpreted, and to which atypical responses are observed. It was defined in the 1970’s by Jane Ayres, who described it as a neurological “traffic jam,” which prevented certain parts of the brain from receiving the information necessary to appropriately interpret sensory integration.
For some individuals, there is “over-responsivity.” They might feel as if they are being constantly bombarded with information. Like Nicholas, these individuals often have a “fight or flight” response to a sensation, a condition sometimes called “sensory defensiveness.” They may try to avoid or minimize sensations by withdrawing or covering ears to avoid loud sounds.
For some individuals, there is “under-responsivity.” Individuals who are under-responsive to stimuli are often quite and passive. They may be difficult to engage, and may have poor body awareness or clumsiness. This sometimes results in an abnormally high tolerance for pain.
Nicholas exhibited behaviors of both “under-responsiveness” and “over-responsiveness.” He was overly sensitive to sounds, tastes, textures, and smells. He also exhibited clumsiness, lack of engagement, and a high pain tolerance some of the time. He experienced “too much” and “not enough” at the same time, all of the time. This was why his behaviors were sometimes erratic, and other times, he was completely calm and relaxed. He was almost always edgy, escalated, checked-out, or exhausted. There was rarely anything in-between.
Now, let’s imagine that there is a professional who is trained to help the drivers of the multi-driver vehicle work together as a team. This trainer turns the ignition off, pushing the car slowly and gently around the empty racetrack. She places you at the steering wheel and calmly says, “Feel this slow 60 degree turn, and turn the wheel 90 degrees to the right for 20 seconds, then back again,” while gently rubbing your shoulders to keep you relaxed.” She practices this turn 20 times, slowly increasing the speed with each run, reassuring you that the course of the racetrack will always remain the same each time you make the turn.
Next, she places you in front of the brake pedal. She steers the vehicle with increasing acceleration, calmly rubbing your shoulders, and gives you an opportunity to brake slowly and effectively before beginning each turn. She practices this 20 times to increase your confidence level.
Next, she places you in the ignition seat and tells you that the new job for this driver seat is to leave the ignition on at all times. Instead of switching the ignition on and off, your new job is to remind the other drivers how to remain calm and feel in control of the situation. The job of the driver in the ignition seat now becomes the team motivator, encouraging communication and respect across the team.
Lastly, it’s time to put you back at the windshield, with all of your newly found knowledge and confidence, to direct the drivers through the next race. Every driver is now cross-trained, and understands how to request and apply feedback from the other drivers.
Will the multi-driver vehicle ever win the race? Probably not. But winning was never really the goal for an out of place multi-driver vehicle. The goal was merely to survive an entire race without crashing.
Occupational Therapy was focused on methodically practicing how to interpret each sensory signal, one at a time, in a controlled environment. Once each individual sensory system was mastered, his occupational therapists were able to challenge him, by teaching him to complete tasks which required simultaneous coordination between two or more sensory systems. Over time, his coordination was improving and his meltdowns were becoming less frequent and less intense. His progress was promising.
There were trampolines, weighted vests, ball pits, yoga balls, squishy toys, soft blankets, slides, monkey bars, and swings. Each one was a tool to help motivate Nicholas to practice his way through the difficult tasks. The swings provided him with vestibular stimulation, and the monkey bars were perfect practice for his proprioceptive coordination. The squishy toys were tactile tools, as well as motivators. Bouncing on a yoga ball for 10 minutes calmed him to the point where he could sit at a table long enough to complete a puzzle.
My understanding of Occupational Therapy was limited, but what the most important thing was that Nicholas was making progress. For the first time, I saw progress, scheduled for one hour per week, and I was willing to accept it as a victory for Nicholas.
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