First, a little background. We encountered this question on twitter from @A_Silent_Child:
“Need input from anyone nonverbal & willing to share. Trying to write a good nonspeaking character. I’m occasionally nonverbal when stressed, but would like a better understanding of what it’s like to be nonverbal most/all the time.
So, he’s answering. Sometimes, we get a little motor-loopy, or I don’t follow where he’s leading immediately, and it’s a tiring process for him, so in addition to what he wrote just now, I’ll transcribe some things he has previously shared.
From today, though:
“Knowing what it is like you mostly think insane thoughts. until now i thought that i would never communicate just be stuck in my own head. Having some way to really really tell you everything is the most important thing ever
I think what the person is asking is learning the essence of understanding the lives of people who do not speak i mostly love love not really being able to speak i love willingness to learn the pleasantness in silence idle things every day. i have such people about who mostly understand me and my needs other people just see some loser jumping up and down i have people who love me.
I every day am so much just loving being someone who is nonspeaking and loving the life i have as much as i finally feel free really free to dream a better life for myself knowing i have really found my voice and i now want to be an activist”
(He always is in control of what we post, if anyone ever wonders. He wants his voice to be heard and shared, because as he keeps telling us, he wants to fight for others who don’t have their voice yet)
From previous writing sessions:
How do you feel about your own autism/being autistic? “It is hard being isolated in my own mind and I am not happy most of the time” (This was back in August, when we first had started open communication)
For you, what should (people) know about the difference between how you appear and how you actually are, and what you might be thinking? “They should know that my thoughts are sometimes very different than how I seem to be acting”
(Another nonspeaker) described himself as “joyfully damaged” – how do you see yourself in that context? “I see myself as dominantly joyful and my needs and in my presentation but I am not always happy”
Do you agree with his assessment that he doesn’t want to change who he is – as far as how you feel about yourself? “I really agree that I would rather be who I am and leave changes out of it”
Do you agree that autistics are more in touch with, as he says, an “angelicness“? “I think that (he) is right not that autistics are better than anyone else but that we have a spiritual side that is very deep”
Someone asked him, how do you perceive music (i.e. in the sensory realm)? “I perceive music as multisensory as visual and beautiful sounds”
One morning, he grabbed the letterboard after a news feature on DACA protests: “We should join a protest. Opposing mostly the policies of injustice” What kinds of injustice are you thinking about? “The kinds of discrimination that people of different abilities and colors and nationalities face all the time”
On my cousin, who is also #actually autistic and #nonspeaking: “I think that he needs this method (spelling to communicate) in the worst way. I would like to tell him that he is the closest to me neurologically in our whole family – minds are very similar so I hope he can learn to spell on a letterboard too so he is no longer trapped either”
Additionally, he has shared in many ways that his sense of being “trapped” or “isolated” has impacted his thoughts, how he sees the world, etc. He and I had a conversation that lasted over many days, about the dreams he was having, and that they were disturbing to him, and “insane” – once I shared a dream I’d had the night before, of having raw chicken in my mouth for almost the whole dream, he replied, “I think your dream is comparable to mine” – it helped him at least a little to hear that dreams are often really absurd and sometimes unsettling for most of us…
So, there we are for today, a little insider’s insight to being #ActuallyAutistic and #Nonspeaking
2 thoughts on “Answering a question: What is it like being nonspeaking?”
Mackie and Mom-
Truly, don’t stop! I can’t put into words how I appreciate you both! Yesterday, your blog inspired me to keep going on one of those days I felt like giving up. These days don’t come often but when they do failure feels like a bolder rolling downhill with no hope of stopping it. My two amazing boys, both 13, non-speaking and non-reliably speaking started the boards a little less than a year ago. Yesterday you Mackie and Mom inspired me to keep going! Keep it up, please! (no pressure:) Many Blessings heaped up on you both!!
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That is a very familiar feeling from the mom side. I knew he was ready, more than ready! It was my lack of experience and needing more training – and it did take years, because we had to have the ability to go and travel to VA again. You’ll all get there, though. Mackie and I send you lots of love and positive waves!