I am a nonspeaking autistic teen. I used to be called non-verbal. Non-verbal is a misleading word because it conjures up ideas that a person who cannot speak cannot understand words either. That is far from the truth. The truth for me is that I love words and express myself most fluently with words.
I just can’t say them. I can’t even type them completely on my own yet. I need a communication partner or facilitator to help me bring my words out to be shared with others. I realize this is hard to understand because most people take the ability to express themselves for granted.
There are many autistic people whose nervous systems are really wired differently from the neurotypical. My senses are easily overwhelmed and need breaks from stimulation, and making the environment more bearable takes a lot of energy.
I stim to block out some sensations that would cause me discomfort. Stimming works by stimulating a diverse range of more pleasant sensations to distract me from noxious stimuli like electricity buzzing or babies crying.
My ability to carry out motor plans is also impaired. Taking an order and obeying it fully depends on many factors to make it go right. I have to be able to get my body regulated first. My body needs to feel calm and present. If I cannot feel where my body is, I get very anxious because that is when my body starts acting out of control.
I am not even able to make myself stop because it is like my body has a mind of its own. When this happens I do awful things sometimes like grabbing at people. People try to stop me, but it’s a lost cause.
My body must expend its energy before I can regain calm again. It is not just one thing. My body gets impulsive. Certain actions become hard to resist doing. Being alone makes it even harder. Sometimes a person being there to remind me not to do it can help, but sometimes the impulse is even too strong for others to stop.
For example, I have had impulses to unroll entire rolls of toilet paper and play with peoples’ tooth brushes. I know it angers everyone, but I can’t make myself stop. Meaningful movement does not come easily for me. For this reason I still need people who can keep me regulated, calm, and stay on task to communicate.
I try to communicate with everyone but some people are easier to type with than others. The people I do best with are ones who believe in my intelligence. They decide I am worth talking to even if it is hard or time-consuming. A person who is kind yet firm, and extremely patient, is the best communication partner.
Fearful helpers do not do well. I am very sensitive to that emotion and it makes me fearful, too. Many people can’t assist me immediately because it takes time for me to get comfortable and in sync with each person’s ways of supporting me.
Being educated in Rapid Prompting Method (RPM) is mandatory to successful communication partnership with me. RPM takes my sensory and motor challenges into consideration. Teachers must presume competence to assist me in learning regular school work rather than repetitive drills.
They use various strategies to keep my senses engaged to learning. I focus on what my aide brings to my attention so I can concentrate on what I need to and ignore the background. If left to myself, everything becomes chaotic, and I get too overwhelmed to learn.
Sensory aspects are difficult enough, but motor-control challenges are equally difficult. When I want to say something, I cannot just say it. I am blocked from talking because my mouth refuses to say my thought. I can’t type it on my own either because I need to rely on cues to help me stay focused and not overwhelmed by having to organize every stimulus on my own.
Waiting for my communication partner to give me the signal to start helps me to direct my energy to spelling and touching the letters to get my thoughts out. In RPM, answering questions about what I just heard helped me become good at spelling. I needed this practice to get better at bringing my more inner thoughts out.
Communicating my inner thoughts is a lot of work for me. I have to isolate the thought I want to express from many other distractions. These distractions can be a sensation in the environment or in my body. They might be obsessive thoughts or impulses to do something else. For me to successfully win at communicating, I need an ally to help me not fall off the path my words must travel to exit my mind.
All of this communicating takes a lot of time and energy. Beating the alternative of silence is a monumental effort. Some people may criticize my need for support as not encouraging independence and being too hard.
I ask you to consider how horrible the alternative is.
Many people are still stuck in a silent hell in which they are prisoners inside themselves. Would you want this for yourself? The freedom of people unable to speak is worth every inconvenience of dependency.
- The Cage — August 8, 2019
- Independence through Dependence: Why I Need a Communication Facilitator — June 26, 2019