Sensitivity

I want to share some sensitivity issues I have and try to explain what they are about because I realize it may not be obvious. Some people call what I have “sensory integration disorder” and it is a neurological condition associated with autism. Whatever the name is, I want to do my best to explain the uncomfortable feelings I have that are not typical for most.

I would be what some might call a picky eater. I don’t tend to go for food that’s too spicy or tastes too different or sometimes it is the texture. For example, since preschool I have not liked sprinkles because to me they ruin the smoothness of ice cream and cupcakes. I tend to “go with what I know” and for that reason keep what I eat pretty consistent. I have made an effort in recent years to try new things, but some food simply doesn’t taste good to me. I know I am not alone with this. I have met people who didn’t expand on what they ate until their mid-twenties and there are some people without autism who agree with me on sprinkles so I know I have time to figure things out while still having my own opinion. 

Another sensitivity is touch. When someone touches my body it can really bother me, especially if it is unexpected like a surprise hug. Sometimes when I am touched I often rub at the spot to make the feeling of being touched go away because it can leave an additional feeling on my body that I didn’t want in the first place. Some things simply don’t feel good to me, like certain fabrics and metal which can feel sweaty and dirty. My mom would use a special brush on my arms and legs when I was younger (and even once and a while now) and that would help make me less sensitive as well as be soothing. 

Some people may think I am rigid or closed off because of my sensitivities. I know myself how I feel and I am okay with staying guarded to avert the uncomfortable feelings that sensory integration disorder brings. 

Days

    Schedules are important to me and can make me feel comfortable. I’ve felt like I have developed a pattern when it comes to days that both creates some flexibility, but also can give me what I need. For example, my dinner schedule has changed throughout the years, but sometimes I still like to have the same dinner on certain days as a reminder of what day it is, such as pizza on Fridays. I can definitely tell what day it is without my dinner schedule and I’m open to a change in plans based on what I have going on, but I do like to plan that out and make switches in advance so I know what to expect.

    At school, some classes I only have on Monday, Wednesday, and Friday and other classes I have Tuesdays and Thursdays. Friday lets me know that the weekend is coming, but sometimes there’s no school on Monday and then it still feels like the weekend. However, I am quickly able to adapt to how the next day is Tuesday.

    When I’m in a certain mood, I feel like that mood will change once it’s the next day. There’s only so much a person can do in one day. When I’m on a plane ride late at night where I can’t get any sleep it feels like the previous day is still happening even though it is the next day. If I’m worried about something as I go to sleep, I know my dreams will help distract my thoughts and help reset my mind so I can move into the next day fresh. Schedules can be powerful and positive. Days provide me with structure and they help set my mood for what I am going to do.

Accommodations

I was fortunate to attend Canton Public Schools where there was a team of teachers, aides, speech therapists, special ed directors, and coordinators who supported me from a little kid to when I graduated. My success was their goal. 

Today I attend a Massachusetts State University where there is an accommodations office that helps me organize my accommodations and it is on me to share with my professors and ensure that they deliver.  The support is there and the idea of inclusion is there, but I feel the burden shift to me. Being a self advocate is hard, especially for someone who has communication gaps in the first place.

I am fortunate to have several work opportunities at some great companies including Target, Teladoc Health, and Boston Medical Center. They make efforts to include me and work with my differences and care about learning how to support me.

As I look for new work options, I see my experience so far with people who offer accommodations and take time to work with me is rare. Similar set ups are not only hard to find, they are extremely hard to find. 

Here lies the opportunity.  I made this video named "The Importance of Accommodations" for Teladoc Health as part of our a11y efforts to help people understand why accommodations in the workplace and accessible services and content is important from my personal perspective. I could write more, but watching it says it all.