“Use your words” and “Ask, and you will receive” are phrases I heard a lot during my childhood. Back when I was younger, I thought this meant to stop being so shy and well, speak up. I also wasn’t the kid who enjoyed imposing on people or asking for things I wanted. Little did I know that my parents were planting the seeds of what is considered self-advocacy.
Of course, when you’re an adult with an Ism “self-advocacy” is a term you hear of all the time. I know I do, even if at this point it’s mainly the voice inside of my head. I know sometimes it’s hard. After living away from home for nearly 2 years, I know how to get accommodations if I need to, tell people how my autism affects me, and try to preach an understanding of sorts because the typical world sometimes just doesn’t understand.
Easy Advocacy – Speaking my Native Language
Asking for extra time on a test or requesting a private dorm room is easy. Speaking to a group at a conference of professionals and adults seeking to learn more is pretty easy, even if I am nervous I at least you know they want to hear what I have to say. Those in these situations understand the language surrounding isms and appreciate what makes me different.
Hard Advocacy – Like Speaking a Foreign Language
However, people I actually know outside of immediate family are more of a challenge. They may not think about the term “self-advocacy” since they don’t have to do it. After all, they don’t live in a world where they have to be their own champions in order to get needed support. To them, I might as well be speaking a foreign language.
Nothing is harder than self-advocating to friends. For example, telling a friend that I need some space can become quite an issue. I can imagine being the friend hearing me tell them that I need space. They might ask why. I then, honestly answer their question and explain that they’re too loud, or that time spent with each other is too frequent, or I feel overwhelmed.
For me, trying to explain my differences feels like I am speaking in another language, and it is strange. It takes all the courage and strength I can muster to speak up for myself. The challenge is getting others to grasp a brand new concept they have never had to consider before. It is so very hard to advocate and be vulnerable at the same time all while the other person can’t seem to wrap their head around what I am explaining.
I’ll keep at it and work harder to communicate with people. I will continue to advocate for myself and my personal needs, even though it is harder than most can imagine. I don’t receive the praise I did when I was little and “used my words”. Instead, I find shock, bewilderment, or some unreadable expression on the faces of friends. It breaks my heart and it is discouraging.
In a perfect world, it would be wonderful if others would educate themselves on just how hard it is for those of us with isms to speak up about how they are feeling. It is not my desire to offend you at all, I just need you to understand me and my isms. This is what self-advocacy is on a person-to-person level. For now, I guess I’ll have to keep pushing to use my words and I sure hope that you will understand.