When the invisible disability has visible effects: Part 1
Some textures are painful to eat
Some sounds are painful to hear
Some textures are painful to touch
Some sights are painful to see
Some scents are painful to smell
Pain isn’t the most accurate or definitive word to describe the autistic experience of sensory overwhelm and overstimulation, but it’s the closest word I’ve found in the English dictionary.
And as an autistic person, I deal with all of these and more.
You’ll hear me mention often how autism is often considered an invisible disability. Sensory challenges are one of the ways this invisible disability has physical ramifications. For most people, escalators, strobe lights, mushy food, loud chatter, and car horns only cause mere annoyance. For many autistic individuals, it causes pain and discomfort that doesn’t lessen over time. No matter how many times we encounter this sensory experience it still causes the same level of pain. This is why I typically use aids like headphones or sunglasses to ensure I keep overstimulation at bay, even at places like the supermarket or a conference, where lots of sounds and lights are usually present. Sometimes, however, overstimulation wins anyway, and I have to deal with either a meltdown or a shutdown.
When you think of meltdowns and shutdowns, you might think of a child who throws tantrums or is obvious in stimming (like banging their head or rocking back and forth). I once did these behaviors as a child, and even the slightest overwhelm would make me burst into tears and scream. But as an adult, meltdowns and shutdowns look different than what you might expect, and they can often be hidden so they are less obvious.
What Does it Look Like to Be Overstimulated!
Every autistic person is different, and different support needs and experiences can impact one’s reactions to overstimulation. For me, meltdowns typically are tearful, anxiety-ridden episodes of overwhelm where I can’t think straight or effectively solve problems. I have the urge to curl into a ball and wail, but I know I can’t, so I internalize the feelings but they come in too fast to process and often spill out. Shutdowns are worse to me, because they make it impossible for me to effectively communicate. I sometimes go mute during a shutdown, like the words are stuck in my mind, but can’t come out. During either of these episodes, it’s hard to navigate my present environment and the onset of these situations can often be more overwhelming than the sensory overload because I feel like I’m losing control. That’s why travel and shopping are usually things I do with family or a friend, so I can stay safe. Thankfully, I’ve learned to identify my feelings and emotions faster in recent years, making these episodes less common in my day-to-day life, but it’s still hard when I constantly faced with overwhelming sensory experiences everywhere I go. Slowly but surely, I’m learning to navigate life on my own, but it’s hard. Working in a professional capacity doesn’t make this easier because there are social conventions, expectations, and an image you are supposed to maintain that is sometimes impossible for me. For example, I’ve faced an incoming meltdown while preparing to speak at a large conference. Every other time, I’m fine, but this time my brain got overstimulated. I had to run to the bathroom to calm down and decompress, and stimmed with a fidget the duration of the presentation to ensure I focused my energy elsewhere. But I love what I do, and that helps me push forward.
Unlike what people say, this isn’t something a person can just “get over” or “work through”. This isn’t to say that there aren’t way to mitigate these situations and cope like I have learned, but these reactions will happen nonetheless. The idea that we can be desensitized to stimuli is often a misconception and that can be harmful because it encourages autistic individuals to mask or pretend things don’t effect them. For me, masking only led to bigger blow ups, less recognization of incoming meltdowns and shutdowns, and more flare ups of chronic illness and stress-related health issues. Yes, my health can directly be impacted by forced masking because keeping those emotions inside and forcing myself to endure the pain of overstimulation can overwhelm the body, distract the immune system, feel like pain to the brain, and push stress hormones into the body at a higher rate. I learned this the hard way first hand. Eventually, this can cause skill regression and burnout, which I also experienced.
So, for allies, the next time you see a “misbehaving” child in a supermarket or an adult who can’t tolerate escalators or large crowds, try not to assume weakness and vulnerability, understand that they may have sensory challenges and are feeling physical and mental pain and discomfort in that moment. They need comfort, not prying eyes and questioning looks. They need love and the encouragement to push through, regroup, and stay safe.
For fellow neurodivergent individuals, know that you have the power to identify and express your feelings, and doing so safely and healthily can improve your overall wellbeing. Masking is sometimes helpful, but it has to be healthy. If you need accommodations like headphones or a sensory room at the airport to feel safe and calm, don’t hesitate to ask for those things or let someone know that you need them. Don’t feel ashamed for doing so. I provide a lot of first-hand experience on this in my other articles, so stay tuned for more of my story!