I have written about how functioning labels are not helpful, how they help perpetuate myths and how labels don’t really tell our stories.
I wrote from the perspective of someone who was labeled “low-functioning”; someone who has been called “retarded,” “too severe,” “without human dignity.”
Some autistics who are labeled “high-functioning” also wrote about how such label is unhelpful in their lives and how their struggles are dismissed, ignored and rarely acknowledged.
Why does it seem like very few people are listening?
Many autistics use the blogosphere to self-advocate. Part of this is a rebuttal to messages that we see as damaging to all autistics. Messages like some articles about the “science” behind studies – like the one stating that autistics are not capable of romantic relationships; messages of pity and fear, propagated by advocacy organizations; the disregard for our lives when one of us is murdered; and the constant talk of a cure.
Then we write. We show how people are wrong in their assumptions, how our lives really are; we ask for apologies after we are vilified by the media (although our requests are ignored); we explain why we don’t like the cure talk and why many of us don’t want a cure.
That’s when the conversation tends to get angry. Some parents and some “experts” say: you don’t want a cure because you are one of the “high functioning” autistics. They then list the “horrible” things their children do or how difficult they are.
They are not listening.
I will say it again: many autistics, all over the spectrum, are advocating; many of us need a lot of help but we do not want to be cured. We would not be ourselves then.
And it is very dismissive to call someone “too high-functioning to understand” as if they don’t have challenges, as if their autistic lives are just an adventure with a happy ending. Some autistics might be able to live independently and work; some have children and seem to live an ordinary life. But they also have moments when they might “lose” their ability to speak, they might have digestive problems, or they might injure themselves.
These are some of the reasons why none of us, while against a cure, are against research that might make it easier for all autistics to deal with these and other challenges – without eliminating who we are.
Still, some people are not listening.
And then there is the fact that some people like me don’t want to be cured either. I wrote about this, as others have also written. We need a great deal of support, but we want to be accepted. We want to be included. We want to be understood and we want to be heard.
But people are not listening.
When we say we are proud autistics, we get ignored. It does not fit the narrative “you are not like my low-functioning child.”
I say: I AM your child. You don’t know all of my challenges. I have many; communicating can still be a difficult process. But I am happy being me. Please, stop saying that I must want a cure. My physical needs are many; my autism is awesome. I need assistance for my needs, not a cure for who I am.
Are you listening now? We are all autistic and the help, supports and accommodations we need are intended to help us live a better autistic life. Labels have nothing to do with that.
About the Author, Amy Sequenzia.