There has been a lot of talk lately about getting rid of functioning labels, and I could not agree more. I have always been deemed “high-functioning.” I’m verbal, have my license and have gotten married. Seems pretty high-functioning. What people don’t see is me trying to tie my shoes and crying out of frustration because I can’t make my hands work. They don’t see me have a meltdown when my restaurant takeout order didn’t butter my pita correctly. They don’t see me sobbing about social loneliness and isolation all because I felt like I messed up in a conversation.
My executive functioning is so bad, I often ask my husband multiple times in an hour when they need to be at work. I may have some areas I function well in, but I have many, many areas in which I need supports. The same goes for people who are deemed “low-functioning.” Somebody might not be able to talk, but they can graduate college, a feat I don’t believe I will ever accomplish.
Because I’m deemed high functioning, I feel like I have to live up to that. There are days when I want to sit under my work desk and rock, knowing even a few seconds would help. I also have days when I am just done. All I want is to go home and read, but I can’t. I have proven so many times that I can do things “normally,” I feel it would be looked down upon if I decide to display the behaviors I want and frankly need to at those times. This causes me to mask, which just makes everything 10 times worse when I am able to take the mask off and finally be autistic. I have also been denied services because I only meet some of the criteria. Just because I can present well at an interview doesn’t mean I don’t need help at other times.
We as a community need to find a different way to describe us. Although we are a spectrum, we are not a straight line. High-functioning and low-functioning labels put us on that straight line. We need to find a way to expand and treat every individual as someone with very different and complex weaknesses and strengths.