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edwardianmumbo · 6 months

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Verbal Terminology in Autistic Tumblr Survey Results

After quite a long while (and for that I apologise) I’ve finished the results of a survey about the descriptivist uses of the terms Nonverbal/Non-Speaking and Semiverbal/Semi-Speaking in Tumblr’s Autism Community. This survey was originally intended to cover more, and just be a fun side project that unfortunately ended up with many flaws throughout the whole process. I'll go into specifics more at the end in the “Further Notes” section!

All that to say, I heavily implore you to do your own research and listen to others outside of this survey about these terms. Admittedly I think this survey is best taken as a small peek into how a very small group of people currently use these terms, in a fun non-informational survey format. (Also this was my first time doing image ids, so well i tried my best they might be really bad and for that i apologise in advance!!)

Demographic Questions

[image id: a bar graph called “What Would You Call Yourself” with the options going top to bottom the graph says Nonverbal at 16 (3.5%), Semiverbal at 118 (25.9%), Someone Who temporarily Loses Speech or Temporarily Can’t Talk at 308 (67.7%), Verbal or At allistic Level at 171 (37.6%), and Hyperverbal at 95 (20.9%) end id]

First things first I looked at the different ways survey respondents identified personally, and at a base level we can see most people said they had varying speech levels. The next highest given types overall were Semiverbal and Speaking Autistics, with Nonverbal being the least used term among survey participants. Due to this being multiple choice I also looked at what group of responses where most common:

[image id: a bar graph of Unique Term Use Types. The highest is Temporary Only at 141 respondents. The next Highest is VT (Verbal and Temporary) at 60, followed closely by Verbal Only at 59. The rest in order of highest to lowest is Semiverbal Only at 41, ST (Semiverbal and Temporary) at 33, TH (Temporary and Hyperverbal) at 29, Other Combinations at 21, VTH (Verbal, Hyperverbal, and Temporary) at 19, Hyperverbal Only at 18, SVT and STH and VH are all tied at 8, SV (Semiverbal and Verbal) at 6, and finally Nonverbal Only at 4 respondents. end id]

This graph more clearly shows that a majority of responders would consider their verbal speech levels to change, but only a minority of that group also considers themself Semi or Non-Verbal. You can all also see how a majority of responders considered themself either as just temporarily losing speech or a combination group using the Verbal option, which highlights a potential bias in the future questions. (Also the other section is for all combinations that got under 1% of respondents individually!)

[image id: A pie chart pf praticapent’s age groups. The highest at 56% is 18-29 year olds, with 13-17 place at 38.2%. The rest have the percents cut off but in order are 30-29, Under 13, and then 40+ year olds. End id]

Most responders fell in the age ranges of 13-29. This seems to follow general Tumblr trends after a quick search, but possibly leans a few years younger then the general user base. The lack of older adults taking the survey is unfortunate as some of these terms have been around for a while, and it’s always a plus to get an all ages response on surveys like these.

[image id: A pie chart titled “Where did you find the survey”, The top choice being “Another Tumblr Blog” at 59.1%, and the 2nd “Nd Culture Is” at 37.1%. You can see the slices for “From Someone I Know” and various Other Responses in the pie chart, with the other responses blurred out in the index sheet. end id]

This graph is admittedly a bit worthless, as I made it before deciding where I was going to post the survey to, so a decent amount of people, both those who selected “Another Blog” or Other mentioned getting it straight from the og post or a reblog of it. So needless to say i wasn’t quite exact enough by what i meant in this question (which was to see how far it spread vs any bias from just my “in-group” so to say), but it does does imply that that the survey didn’t make it far from the groups I posted it in. Which is expected with how little "promoting" was done during the survey period.

NonVerbal / NonSpeaking

[image id: a multiple bar graph showcasing the correlation between how responders self identified vs how they define Nonverbal. Going from top to bottom is The Fully Always option chosen by 3 from Nonverbal Only, Masking with no chosen responses, Little to No Speech at 2 from Nonverbal and other Terms Users, Allow Temporary at 9 from Nonverbal and other Term Users plus 7 from Nonverbal and Temporary and an intentional Nonverbal Only Responder, then All Above with 1 Nonverbal and Temporary plus a Nonverbal Plus Response, Followed lastly by Other Definitions with no responses. End id]

Before going over this data I want to reiterate that the survey had very few nonverbal people taking it, so this data is not going to be all possibly not even most, nonspeaking people’s option on defining those terms. Next The N Plus section on the graph includes the N and T groups as well as other responders who marked themself with more than just the Nonverbal role. That said it seems that the greater community tends to lean towards the “Someone who has periods or is always not able to speak and/or can't speak well” option, and well quite a few nonverbal autistics agree, there’s a group especially among those who only consider themselves nonverbal who prefer defining it as those who always can’t speak fully ever. This matches with trends i’ve personally seen in the nonverbal tags of nonverbal people preferring definitions that centre on the lack of verbalness, even completely or most of the time vs speaking autistics using more broader terms, but again with such a lack of nonspeaking people involved there is no solid reliability to the data.

SemiVerbal / SemiSpeaking

[image id: a multiple bar graph showcasing the correlation between how respondents self identified vs how they define Semiverbal. Going from top to bottom is Partly All with 8 from Semiverbal Only plus 7 Semiverbal and Temp and 10 from Semiverbal Plus, Next is Inbetween with 24 from Semiverbal Only and 42 from Semiverbal and Temp plus 53 from Semiverbal Plus, Lose Speech has 5 from Semiverbal Only plus 6 from Semiverbal and Temp and 8 from Semiverbal Plus,All Above with 2 from both Semiverbal and Temp plus Semiverbal Only, Context-Based with no responses, and finally Other with 1 from Semiverbal Only plus 2 from Semiverbal and Temp and 3 from Semiverbal Plus. end id]

Like The Nonverbal Section, The S Plus section on the graph includes the S and T groups as well as other responders who marked themself with more than just the Semiverbal role. Otherwise, from this graph we see an overall trend of including anybody “between nonverbal and verbal” regardless of how the respondents identified themself. There also seems to be less of a disconnect between those who are semiverbal vs the greater community when compared to the results of Nonverbal, although whether that is a bias of the survey or a general trend is hard to tell. Most respondents who chose Other seem to have given either an all of the above answer (which I might have manually included???) or mentioned a definition using the idea of always struggling with speech but at different levels.

Further Notes

One thing I really wish I had done was involve more nonverbal and semiverbal people in the whole process of making this, i think looking back there’s definitely moments were you could tell this was made by a speaking autistic and I really didn’t do nearly enough to include and uplift the voices of those who this survey was literally about. In a similar vein I forgot about pretty much every non-autistic community who uses these terms, but also didn’t make it clear enough that it was unintentional, leaving not only countless voices unheard but accidentally ostracising those whose voices are equally as important as what this survey managed to cover.

Alongside that I was very unclear in what some questions meant to the point even future-me wasn’t sure what the data was for, plus I bit off much more than I could chew, making for a messy at best survey experience. As such survey taker’s might notice not every question was given space here, and that is simply because I couldn't process the data in a timely manner.

I did however let people opt-in to sharing further notes about how they use these terms and will share some of those under the read more with no individual commentary so as to let people speak fully for themselves:

There is a gap in the language available to describe autistic difficulties with speech. Verbal should describe the ability to use language, written or spoken, but in the context of neurodivergency almost always describes speech only. Non-speaking would be a more appropriate term and would free up nonverbal as a term for autistics who struggle with written and spoken English (as in syntax or language in general, not spelling). This has been talked about in high support need circles but is not mainstream.

I think we should look to the wheelchair users for language design, specifically the differences with the language around full time wheelchair user and ambulatory/part time wheelchair user

i wish mostly speaking people would find other ways of explaining their experiences without using nonverbal/nonspeaking people's language. we already have a much harder time communicating and when our language is taken or used in different ways that makes people confused about the meaning and they assume that the experience of mostly speaking people is the same as mostly or fully nonverbal/nonspeaking people. when actually the overall experience is very different

I am not sure exactly where I fit within being verbal but losing speech and struggling to speak almost always, or if I am semiverbal. I think the lines between all of these terms can be blurry, but I think it's bad how verbal autistics who lose speech occasionally (and often talk about being able to push through this and force themselves to speak - which is how I feel almost all the time) have taken these terms which makes it very hard to find content from people whose experiences with speech are similar to mine or who are nonverbal. I think it's connected to how in general lower support needs autistics take most of the space in the autistic community and it can feel isolating for people like me who are higher support needs.

And well this survey was about English specifically, I want to share what this survey respondent said about how the terms work in their language and how that affects their usage of these terms:

third of all: the alternatives to that, such as "losing speech", "having verbal shutdown", or "going mute"... simply do not work in some languages. and as proof, let me show you my beautiful native language, that being ukrainian!

"losing speech" = our word for speech equals our word for talk. when losing speech, i CAN talk - but not by using my voice.

"verbal shutdown" = our word for shutdown is not being used in the same way as in english and there is no good alternatives.

"going mute" = our word for mute has a very long and complicated and problematic history, and is not something most people would be comfortable saying!

so, that means that i am left with absolutely no phrases to use in my language - because the only one, that being "going/becoming non-verbal" which is translatable and has the same meaning - is not an option anymore.

#survey #neurodivergent #actually neurodivergent #actually autistic #long post #cw long post #emri.exe #i'm still not certain if this is actually legible as one long ass Tumblr post #and not a reblog chain but that was much harder mechanically to make in advance :/

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