As insane as this sounds, my shirt has stabbed me, many times. No, I haven’t managed to find a shirt with AI that has gone mad. However, I have sensory integration issues that have made it feel as though my shirt is cutting me.
Things such as lights, noises, and smells can cause serious issues with Autistic individuals. For me, noises and tactile are my two major sensory problems. To me, the smallest of noises can pierce my ears like an ice pick. Someone touching me, particularly unexpectedly, makes me want to jump out of my skin. Selecting clothing to wear each day is not as simple as “how does it look?”. It’s “how does it feel?”. This makes it so hard to pick out an outfit for the day because some days are not bad but others are horribly painful.
Why am I telling you this? Here is why. When you see someone who is freaking out about “nothing”, what do you usually think? Are they drunk? High? Crazy? If it’s a child, do you think “what an annoying brat? Let me give you another perspective. What if that person is panicking because of the searing pain in their eyes or ears? If they have the sensory issue, they aren’t “misbehaving” or “acting silly”. They are in horrendous pain and it’s become too much for them. Don’t believe me? Follow this link, watch this brief video that simulates Autism sensory issues, then come back.
Welcome back! Does this make it more understandable? I can tell you, this is extremely accurate to me. IN fact, I had to lay down after watching this as it overwhelmed me! I had a meltdown that occurred recently that demonstrates it can happen at any time, even to older individuals and even those who don’t seem to have major issues.
It happened at an amazing work event. I was invited to an executive conference and I was so excited and flattered. The first day went (mostly) well with only minor issues that I was able to handle. The second day dawned sunny and warm, and I was in an amazing mood. I’d met many wonderful people and was thoroughly enjoying the various meetings and seminars. I was sitting at a large table at lunch, eating and laughing with tow people I look up to and love being around when it happened. Out of nowhere, from behind, someone began clanging a metal bell with a mallet. I was terribly startled and the pain shot through my ears like a bullet. “You’re fine, you’re fine” I whispered to myself as I tried to meditate and laugh off the worried looks of my companions. Then it happened again…and again…and again. Within a moment, I was curled in a ball on my chair, sobbing, hands over my ears, rocking back and forth and pleading that it would stop. My vision went dim and hazy, all other noises amplified louder and louder, with the sound of the bell cresting above them all. I could feel eyes on me, hear people around me, feel someone touching me. I remember recoiling from the touches and desperately wanting to escape, but our table was in the center and there was no way out for me. I remained, curled in a ball, screaming, until the noise finally stopped. I hid in a corner of the conference hall for an hour, exhausted. The rest of the day was a blur. I missed most of the events. I sat alone. Eventually, I attempted to approach others. Most appeared uncomfortable with my presence so I faded away back to my corner.
This incident was traumatic, to say the least, but it isn’t unusual. Sensory issues are a huge factor in many decisions I make. It’s not just what I decide to wear. It affects when I leave the house, when I work from home versus at the office. I affects whether I accept an invitation out or cancel. It determines what I eat, what I watch or listen to, and even whether I can accept or make phone calls that are not urgent. On a “bad sensory day”, simple tasks like taking a child to school, picking up a gallon of milk, or even bathing become gargantuan tasks that take immense amounts of energy to complete. When bad sensory days come too close together, I become isolated. My anxiety skyrockets and my depression begins to take hold of my mind, twisting it and plunging me into darkness. Sensory issues do not just cause physical pain, but lead to spiraling that can last hours, days, or even weeks.
How can you help? What’s this have to do with you, you may wonder? First of all, many times, it is thoughtlessness that triggers these episodes. Consider the video above. Had the young lady’s father thought about her needs, or anyone else at the event thought of them, rather than brushing them aside or taking away the only things she had to soothe and regulate herself, her meltdown never would have happened. I can personally say, it is very common to have my sensory needs brushed aside as whining, being silly, or trying to get out of responsibilities. This is far from true. After the incident I described above, I was blamed for my meltdown because I should have “warned them” this would happen. I don’t know what exactly may trigger me at any time but it was my fault it happened. (Side note – I did tell them what my general triggers are on the registration form). I also had several people tell me that the noise “annoys everyone” with an air of “you overreacted” surrounding the statement. Even when people are aware you are Autistic and have sensory integration needs, they tend to blow those needs off as unimportant. However, sensory discomfort is the key to so much. My executive functioning, my speech, my ability to work, to perform daily tasks, to function, relies on me not being in agony When I’m in severe sensory pain, I go into fight or flight (usually flight) and can think of nothing more than ending my suffering. How can someone work, learn, think, or interact with others with that in their minds?
Second, if someone is discussing with you their symptoms, or an incident they endured, this indicates they are trusting you. Please do not tell them things like “anyone would be bothered by that”, “isn’t everyone a little Autistic”, or “I don’t like that either but I’m not Autistic”, implying that they aren’t either. First, you shatter their trust and show you are not worthy of it. Second, it negates something they find exceptionally painful and disabling. This is one of the key symptoms of Autism that makes it a disability. You may feel uncomfortable when too many people crowd you or you may startle when someone unexpectedly touches you or cover your ears to a loud noise. You are not disabled by this input and your brain can begin to block it out. Our brains cannot. Do not negate our pain in an attempt to comfort us. We tend to be highly logical and we recognize it is part of our Autism.
Finally, if someone has told you they have certain needs due to sensory issues, please believe them and ensure they are met. These are just as important as the needs of someone with any other disability and make just as much of an impact on us. Just because you cannot see it does not mean it isn’t there or isn’t severe. It wouldn’t be considered a disability if it wasn’t disabling!
Thanks so much for reading and remember, be the truest version of yourself, always!