By: Fiona Rattray, PTIC Information Specialist for Putnam Independent Living Services
Have you ever been kept awake at night by a pesky bug bite that won’t stop itching, no matter what you do? You get up, you apply lotion, you walk around, you try everything you can to mitigate that nagging, infernal itch – we’ve all been there and can recognize how this tiny nuisance can drive us to distraction.
Or maybe you’ve gone to sit on an office chair only to find that the seat cushions are harder or much softer than anticipated, no big deal, right? And yet, odds are that this niggly little issue will throw you off your game, as you adjust both physically and mentally. Perhaps you miss a key moment in the conversation as you try to get more comfortable, or maybe you spend the next hour so distracted by how the seat feels that you miss the key points of an important work meeting.
These are familiar situations but, for some people, they are overwhelming. Take Jimmy, for instance, as a young child he would collapse to the ground if a loud truck went down the street. He was always on edge in school because of the unbearable flickering and buzzing of the overhead strip lighting and, on his fifth birthday, he curled into a fetal position and buried his head in his grandmother’s arms as the excited and chattering party guests began to arrive.
Now, try to imagine living a life in which you must navigate a constant deluge of intrusive and unwelcome sensations like these. Welcome to the world of sensory dysregulation!
Sensory dysregulation (also referred to as Sensory Processing Disorder or Sensory Integration Disorder) is more prevalent than you might think and has a significant and pervasive impact on sufferers. According to the National Center for Biotechnology Information, it is estimated that 5-16% of the general population has symptoms associated with sensory processing issues (1). The prevalence of sensory processing issues is much higher in individuals diagnosed with autism (as much as 90%)(2) and/or ADHD (up to 40%)(3). Yet, parents or educators of children with autism or ADHD, are often nonplussed when the topic is brought up:
“Does Johnny have any sensory issues?”
“No, I don’t think so”
“So, he’s fine with clothing, eating, loud noises etc.?”
“Well, now you mention it, he won’t wear jeans, I cut the labels out of his tops, he’s a really picky eater and he’s so scared of the sound of the toilet flushing he never goes to the bathroom at school.”
Johnny is 12 years old and is falling behind as he struggles to focus on schoolwork. Johnny may have an IEP, he may be receiving academic support and using accommodations but, if he has sensory issues and they aren’t being addressed, how does he even begin to engage with these supports?
Sensory dysregulation takes many forms. It can manifest as a heightened sensitivity to sights, sounds, smells, tastes or textures, resulting in an intolerance of restrictive or itchy clothing, a refusal to eat certain foods or an inability to tolerate the sound of a police siren. This is why you will see many autistic individuals using noise-cancelling headphones. At the opposite end of the scale, it may dull certain sensory receptors, this can be dangerous as it results in some individuals being less able to register pain. An individual can also have proprioceptive sensory issues, which impact one’s ability to sense their body in space. If you are wondering what this feels like, imagine sitting at a barstool and trying to rest your feet on that little bar underneath, but it’s not there, so your feet swing around not quite knowing what to do. Magnify that sensation, and you will start to get an idea of what it feels like.
You may be reading this and thinking that we all have sensory issues to some degree. After all, some of us don’t like the texture of mushrooms, we prefer soft fluffy towels, or we cannot abide the sound of nails on a blackboard. For an individual with Sensory Processing Disorder, however, there are more triggers, the impact is greater, and the response can be visceral and physical, so much so that it may appear disproportionate to the observer. In some cases, the sufferer even feels pain. Please do not mistake these responses for fussiness or melodrama, take your cue from the response you are seeing and take it seriously.
Which brings us to the holidays. When our emotions are heightened, so are our senses, and the last thing you want is to find yourself at a much-anticipated family event with your child in full meltdown. Here are some tips for getting through the holiday season:
- Try to anticipate the triggers, for example: flashing lights, loud music, excited chatter, unusual smells, itchy holiday sweaters.
- If possible, talk to your child about what to expect and agree how to communicate if feeling acute discomfort – it could be a quiet signal, such as a code word, or a light tap on the shoulder, signifying a need to move away from the sensory trigger.
- Be on the lookout for signs of discomfort such as crying, avoidant behavior, increased stimming or agitation.
- At home, if you have room, set up a quiet calming area with soft lighting and fabrics, some favorite books and toys and perhaps a weighted blanket.
- If you are out visiting a relative or going to an event or parade, try to have a back-up plan – this can be as simple as retreating to the car and going for a short drive, wrapped up in a favorite blanket and soft toy with some calming music.
In short, with a little planning, both you and your child with sensory dysregulation can have a calmer and happier holiday season.
References
1)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5733937/#:~:text=Current%20estimates%20indicate%20that%205,(ADHD)%20%5B4%5D.
2)https://www.frontiersin.org/articles/10.3389/neuro.07.029.2009/full#:~:text=Rates%20of%20sensory%20processing%20dysfunction,et%20al.%2C%202009%20).
3)https://sensoryhealth.org/node/1114#:~:text=Remember%2C%20studies%20suggest%20that%20up,have%20ADHD%20also%20have%20SPD.
