Amy Sequenzia: "Just Me"
Amy Sequenzia writes about rejecting society's many labels. Perceptions such as “super spectacular” autistic and “low-functioning” are equally harmful .
I wrote about being labeled “low-functioning” and how this causes damage to my self-esteem.
But it is not only this label that can cause the same type of damage. Labels, in general, put us in a box and “living” in such boxes causes too much anxiety.
When people read what I write, and when they like what they read, they sometimes seem to think I am some “super spectacular” autistic with a very different label from the usual “low-functioning”.
On the other hand, when some people meet me for the first time, they don’t believe I am capable of intelligent thoughts.
Functioning boxes are not definitions of who we are. They are simply a very narrow view of our complexities.
I am a person who needs a lot of help. And I mean a lot, with everything. I can think independently, but I need someone to ask me if I want to type my thoughts; I need someone to read small prints to me; I need someone to hold my communication device for me; I need someone to direct me to a better place or to help me positioning myself better before I type.
But the words are mine and it feels good to be able to express myself. I can show that I am intelligent.
Once I meet people, or when I know I will meet people who know me only through my writings, my anxiety level is so high, I can act in very strange ways. I can look very childish and silly and I am very self-conscious about this. I can also seem uninterested, but this is only a self-preservation mask. I find it hard to communicate even if I have a lot of things I want to say. Then I need time, quiet time, to process all that might be happening. And I need to focus, which requires a lot of energy.
This is only an example of how deceiving and not helpful labels can be: I could be thought to be “high” or “low” functioning, by the same person, at different times, if only one aspect of my life was considered.
I am writing this because I know some of my friends, autistic friends who are labeled “high-functioning”, have the same kind of anxiety when, for example, they meet other people or when they are expected to show, to a live audience, how amazing they are. Some of them, despite not needing a full time support person like I do, rely on very elaborate charts to be able to go through daily routines.
They could also ask for more support, but they are seen as too “high-functioning” to need accommodations or even understanding.
Functioning labels create more anxiety because the boxes we are put in deny us the right to be a little complicated and different. And yes, I think I have this right.
Someone like me should have the right to look and be very disabled and not have our sometimes hidden abilities questioned, especially if the doubts about our abilities are based on how we look and on how much help we need. This increases our anxiety and makes the neurotypical world so much more difficult to navigate.
The autistics somewhere else on the spectrum, like some of my friends, should be allowed to deal with their hidden disabilities without being called “not autistic enough” and told they “have it easy”.
The box they are put in is a trap: they are disabled but they don’t look disabled enough to be allowed to have support for their disabilities. This increases anxiety.
I am not a genius trapped in an uncooperative body; I reject the “low-functioning label”; I believe my friends who are more independent than me have some of the same issues I have; I believe some of them also reject the “high-functioning” label.
These labels bring a need, external to us, to be, look or act in certain pre-determined ways, or forces us to prove our ability to have intelligent thoughts.
These needs are determined by the neurotypical world and enhances the anxiety already so present in our autistic lives.
I can’t speak for my friends, but labels hinder my life. I reject labels. I am just me.