Imagine being back in fifth grade. Your mom comes to pick you up from school. “How was your day?” she asks. You think about stuff that you read. And every word the teacher said. The kids you ate lunch with. Good things you tried.
The words to tell about your day are all in your head, but you can’t get them out.
Instead, an aide answers for you. “He got mad when recess ended, so he ran away.” And just like that, your day has been reduced to the tiny bad moment in an otherwise lovely day.
The ability to communicate information about natural topics for parents and kids eluded me for years. The feeling of not being able to control your own narrative is crushing. The story evicted me from the role of author and cast me as a marionette, acting according to how the adults in my life pulled the strings of my story.
Everyone wants to control the story of their life that is shown to the people they love. They embellish certain truths and hide others. They make choices about what to share and with whom and what stays private.
This agency has been absent in my life until recently. It really sucks.
Through the keyboard, I shape the thoughts I share. Not every word I type is the truth. I shape what I do share, so much like the people all around me do. The version of a story my brother shares with my sister is usually less filtered than the version he tells my parents. And today, I can do the same thing.
What I discuss with one person can differ from what I share with someone else.
This is something speaking people take for granted. But when they feel like their words are shared without their permission, they are furious.
Still, they do this to autistic spellers all. the. time.
Editor’s note: “Spellers” is a term used to describe people who spell to communicate, either by pointing to letters on a letterboard or typing one letter at a time on a keyboard or AAC device.
These well-meaning people share things their kids type without considering if the typer wanted their exact words shared. Having the exact thing you typed about someone in a moment of frustration shared with them can get hairy.
The most respectful teacher I type with has made life-changing constant work of putting me back in control. She reads me every word in her texts to my mom and asks for my approval before she sends it. When she does this, she says as she is typing, “We won’t send this until you’re ready.” This reassurance prevents my worst anxieties.
Lots of the frustration in my life comes from being misrepresented by those supporting me. The life-changing act of controlling my own life story is not something I take for granted. My very hard won agency is my introduction to feeling more respected as an intelligent human who deserves privacy.
Have a hard look at yourself. Do you let nonspeakers control their communication choices? Give the control back to them. They will always be grateful you did. The total ownership of my communication is priceless.
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- The Right to Privacy for Nonspeaking Autistics - March 2, 2022
- Therapy Saved My Life - September 19, 2021
7 Responses
Nick, this is a really important piece. I’m currently writing a book about fellow autistic experiences of relationships and friendships across the lifespan and was wondering if you would be interested in sharing some of your thoughts and opinions?
I’m taking an ASL (American Sign Language) class. Does sign/fingerspelling count as “speaking” for the purposes you are describing or do autistic people signing for communication count as “non-speaking?
For reference, I am an Autistic mom of an Autistic child — with both of us having selective mutism under stress and me having a SI of languages/syntax
I feel like this is important. As an late diagnosed and speaking autistic I feel like, ever since I got interested in ASD, the self-advocacy that is shared even among the ASD community is about people like me, and most of the time non speaking and/or “intelectually disabled” autistics are not listened to, only parents are and sometimes not in the best way possible, only expressing things from their outside point of view because they cant otherwise. I feel like people dont even want to believe these kind of people actually can have a voice even if that’s not the typical way. There is still so much to do