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.
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Keep up the fight. You make the world a better place by sharing your perspective. My child has apraxia and works hard to communicate, first using a communication app and now through speech therapy. I like how you identify as “nonspeaking”. I agree that non-verbal conveys the wrong idea.
thank you for your comment. I am glad your child is improving in communicating.
Thank you for this article, Phillip! You are making a difference, helping both neurotypicals and speaking autistics grasp a better understanding of the non speaking autistic experience.
I am happy to share my experiences.
So great for you to represent not only yourself – but your many minimal/nonspeaking peers – who also use letter boards and/typing to communicate. Thank you Phillip!
people will not be able to ignore us the more we speak out.
This is sort of a tangential thought. I was diagnosed with a “sequencing” learning disability (in addition to autism and ADHD). For example: if I’m asked to define a word, I’ll sort of “talk around” the exact definition before I get to the point. My brain can’t organize my thoughts very well without extra stimulation (e.g. speaking out loud). Writing helps me process my thoughts a lot better than speaking, though, because I can see the words, and it keeps me on track.
Another thought: People sometimes describe “flow” (in psychology) as feeling both sufficiently intellectually challenged and interested in whatever they’re doing, such that they can focus really intensely on it. It sounds like the key to helping some nonspeaking people communicate most effectively is essentially by helping them to enter a state of flow.
Anyway – I think it’s really important to understand differences and similarities in how each person processes the world, and your experiences help me put mine into perspective. Thanks so much for sharing!
hi ren, I think you are correct in saying that flow happens when I am typing with a trusted communication partner.
I am the mother of a 6-year-old boy with autism, this article gives me SO Much hope for his future, as parents we are constantly worrying about our kids’ future. But to see how you have been able to open doors to communicate yourself is so encouraging ! Keep up the good work!
I do have a question for you. is this RPM different from the talkers most kids are getting at their therapies? or it is the same? DId you get a special therapy or training to use the device? Thanks in advance
hi Esther, I am able to communicate because of rpm. it is a learning method.
(Hi, this is Lisa, Philip’s mom. I’d like to add a little more to Philip’s response. We started RPM by learning from its creator Soma Mukhopadhyay. This is her website http://www.halo-soma.org. RPM is not so much a device, as it is how to educate your child and foster more communication using various means. We start with choices written on paper, then alphabet stencils, and keep working up to typing, handwriting, or even speech. Here is a video I made with Philip awhile back explaining RPM “in a nutshell.” https://www.youtube.com/watch?time_continue=27&v=RLNLUekUs_8
I wish you and your son all the best!
This is an important and valuable article. We need more like it. Thank you so much for sharing.
I am glad to share my experiences to help others.
My brother is 67 years old now. When he stopped being able to express himself at age 3, nothing was known about the issues that are being discovered today. He spent many long years in the psychiatric hospital, over medicated, frustrated and acting out. Thank goodness my parents had the strength and blessings to open up several residential facilities along with
Other parents of.children who were “written off to die in the back wards”. I am happy to report that my brother is stable and living in a supervised home hear us. My mother is 95 now but she knows that my brother and I and our extended family are here as my brother’s supports forever. Thank you for educating us about your abilities and challenges. As we grow as human beings, these valuable lessons will expand us and make all of us better for the future generations.
hi roxanne, so happy to hear your comment. I think you are a great sister for supporting your brother. I am grateful to be living in a time when there is more knowledge about autism.