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Apr 4, 2018 35 tweets 14 min read Twitter logo Read on Twitter
Thread about "functional labels" and assumptions around verbal and other types of communication.
I am an #ActuallyAutistic adult, spouse of an #ActuallyAustistic adult (@bogiperson), and a parent of an #ActuallyAustistic child.
This thread is in reaction to @brookewinters33 's thread earlier today on functional labels (please check it out) and some of the antagonistic responses it gathered.

I will try to explain why "functional labels" are harmful in our lives as an #ActuallyAutistic family.
Useful context: I am an immigrant in the US. When my child was first diagnosed at 18 months (I was still with my ex at that time) we were insistently told by multiple professionals that we MUST use functional labels. #ActuallyAutistic
I was told that I'm "obviously high-functioning" as opposed to my child, who... what?
Nobody knew how to label my child and, surprise, almost ten years later they still don't. But as a parent I was fully expected to embrace functional labels in order to get supports for my child.
If we do "everything right", I was promised, my child will be "high-functioning" while if we do not put in the effort, my child will be "low-functioning."

My child was nonspeaking at that time and had issues around self-harm and sensory integration. #ActuallyAustistic
For the record, I too have major, diagnosed issues around sensory integration and it is my developing insight into my own autism that played a major role in how I advocate and help my child. #ActuallyAustistic
I was uncomfortable with functional labels from the get-go, but the discourse around "you must use these words or else" is intense for caregivers, so I have empathy with people who struggle to reject the labels. We are brainwashed with this. #ActuallyAutistic
In our lives, however, functional labels have been harmful. For myself, being labeled "high-functioning" meant that I did not receive any supports under the assumption that I did not need them, and the pressure to "not be autistic" is intense (cont'd) #ActuallyAutistic
It's not enough to be "high-functioning", the pressure is to pass so well as to basically appear NT and then not to need any support! CURED!!! - or "you weren't really autistic in the first place!" (this is really, really harmful and horrible ). #actuallyautistic
In addition, these cultural assumptions make so many "high-functioning" people doubt that they belong in the autistic community, and it makes it harder for so many people to access supports and networks. #ActuallyAustistic
However, of course there are #ActuallyAustistic people who embrace these labels. Many of us like labels and taxonomies and it's helpful when the world feels just a bit less confusing. But... the labels themselves are not good ones.
Spouse @bogiperson can speak for emself, but I know that both the high- and low- ends of the labels have been applied for em: I have watched people assume e's "high-functioning" online and then completely IGNORE em in face-to-face convo because e does not pass as NT.
These labels are not helping - they are actively HARMING us because so many NT people assume you must be one or the other. Either you are "high-functioning" and then we get "basically fine, just try harder to be normal, also you don't get to speak for all autism" discourse - OR-
--you must be "low-functioning" and then you are assumed not to be able to speak for yourself, make any choices, have any agency.

Abuse and dehumanization are so easy when this dichotomy is established.

As #ActuallyAutistic adults we encounter this frequently, often daily.
Abuse and dehumanization are EASY when the autism spectrum is presented as a binary of "low vs high" functioning." #ActuallyAutistic

NTs tell "high-functioning" people not to speak bc they are "high-functioning", while "low-functioning" people are assumed to have no agency.
These NTs are so often parents, caregivers, bureaucrats, educators, or in other words neurotypical people with power in the lives of autistic people. These NT people with power in OUR lives are telling us not to speak bc... labels.
This is disempowerment.
Now I will speak about our #ActuallyAutistic child, who is 11 years old. Our child has never fit in with these labels. He was "high-functioning" in some ways and "low-functioning" in others. "High-functioning" label was "aspirational" for him.
In multiple school settings, we were asked about his functioning labels. And there were two directions in which he could be sent - the "low-functioning" setting or the "high-functioning" setting. He's been in both. There's no middle ground we could access. #ActuallyAustistic
My advocacy fight for him for over a decade has been OVER AND OVER telling people with significant power in our lives, "imagine a middle ground" - because he did not fit with the stereotypes of a low or high functioning child.
Educators have struggled to imagine a middle ground. We were over and over told that a low-functioning setting would be better for him - but he was assumed nonspeaking, non-reading and not-understanding in these settings. #ActuallyAutistic
In this year alone we had to engage in massive advocacy so that the school would follow his IEP (!!!), allow him to do homework with us at home (they did not believe he could - he can!), just because of the expressive speech issues. #ActuallyAutistic
Functional labels that NTs themselves invented make it so much harder for NTs in power to imagine a SPECTRUM of abilities and access needs - and there's very much a spectrum - other than this harmful binary lens. #ActuallyAutistic
To make it even more blunt, the functional labels made it so much harder for my child to be SEEN as who he is (a complex person, not a label!), and for myself and @bogiperson - to be SEEN as people on the spectrum. This hampers our ability to access supports. #ActuallyAustistic
I will now speak to a related issue: expressive speech and well-meaning NTs.

Expressive speech is a prime component of how NTs evaluate a person on the spectrum - in terms of labels and more. #ActuallyAustistic
A nonspeaking or an atypically speaking person is not going to be evaluated by many NTs (often well-meaning NT people!) as someone with agency.

In other words, a nonspeaking or atypically speaking #ActuallyAustistic person will often be dehumanized.
Many well-meaning NT people understand this dynamic. Their response, as well-meaning people, is to try to "empower" the #ActuallyAustistic person with speaking aids of all kinds: PECs, assistive tech, etc. This can turn out great or problematic. //cont'd
I'll talk about my child again. At this point, expressive speech is what makes him not fit under "high functioning" label and NTs want him to fit, so much! :( :( #actuallyautistic

In a new setting (new school), people begin by not believing that he speaks.
Thread broke here (argh, Twitter) - so going to try to repair.
When I tell them that he speaks but is TOO ANXIOUS to speak in a new setting, I am not believed. #ActuallyAutistic
"We will teach him to use PECs!" (pictures) - I tell them he used PECs in pre-K when nonverbal and did great. He does not like it now.
Next, NTs say --
"No worries!! We will teach him to use an assistive device!!!" I tell them he has and can use the assistive device. He does not like it. I am not believed -
the assumption is that the kid does not communicate at all.#ActuallyAustistic

These adult-ass powerholders in my kid's life cannot ACCEPT THAT HE DOES NOT WANT TO COMMUNICATE WITH THEM. In any way. Not with Pecs. Not with an assistive communication device. Not with pointing. Not with words.

Communicating is scary and these NTs are new. #ActuallyAutistic
Powerholders struggle to accept that they need to build trust, show that they see him as a person before he will be able to communicate.

But it's assumed that he does not know how. Or that he can't.
Once a person is assumed non-communicating, a whole slew of other assumptions are often made - about that person's ability to make choices, have agency, have personhood.

One is assumed either "high-functioning" (communicates, has agency) or "low-functioning". #ActuallyAustistic
This is the damage done by functioning labels. The problem is not just the labels, though. It's the whole mindset, the false dichotomy between high/low, the assumption, the struggle for meager supports. The whole system is the problem. #ActuallyAustistic

Thanks for reading.
If you enjoyed this thread, ways to support me are:
Ko-fi: ko-fi.com/1606IK7FFQTDJ
Patreon: Patreon.com/roselemberg

Check out my #WritingWhileAutistic series on Patreon (free access) patreon.com/roselemberg/po…


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Sep 25, 2018
I'm going to say a few words about this letterpress bundle I am creating. It's not late-night for me yet, but it's gloomy outside, so here's a late-night thread in the afternoon.
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I see lot of people are asking about digitization. It is incredibly difficult to digitize things which are in governmental possession but are not not funded by the government. I do not know the specific situation in Brazil, so I can only offer general thoughts.
Digitization of linguistic archives requires money, equipment, people, space, and time. If older papers and recordings are involved, issues of conservation can also arise. It is almost always a laborious process.

Governments and funding agencies choose what to prioritize.
There is very little surprise here that a government chose not to prioritize digitization and preservation of the archives of languages of people affected by colonialism and related genocide. Who benefits from preservation efforts? Not the government.
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I promised I would try to do a follow-up to my politeness thread, around this question:

"But then why are we polite to people with less power , like service people, homeless people - that's not about power!" (slightly rephrased)

It's an important question, and I have thoughts.
Before diving in, a caveat:

A Twitter thread is not a a peer reviewed article. Twitter is not a seminar room. Even the most thorough twitter thread will not have the same exhaustive rigor & the same discussion opportunities.

What I say is simplified and schematized.
Nor can I always provide perfect phrasing while tweeting, though I try. When people correct me on phrasing, I consider and correct/supplement as possible.
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Jun 26, 2018
OK, a thread about "civility" (politeness) and power. I meant to do this for years, bc people in my community kept asking me about social face (hi again, @tithenai!), but it was not the time. Now is the time.

This is an informational thread. I am a working sociolinguist.
The concept of social face, coined by Goffman, is important here.

Face is the positive social value a person claims when interacting with other people.

Face is related to respectability, pride, and sense of self-worth.
Face is related to social status and to identity.

What kind of face we can claim directly relates to who we are and what kind of social power we hold.

People surrounding you are CRUCIAL to maintaining or not maintaining the kind of power we want/expect to project.
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@iphigenie @tithenai @Julian__West Hey there! So I want to respond, but I've gotten a lot of trolls lately, and my spoons are very low. I'm going to assume you are arguing in good faith, but If this does not pan out, I will need to disengage.
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@iphigenie @tithenai @Julian__West I am assuming from your tweet that you want my "the critique of the long 19th century as Eurocentric" rephrased as "the critique of the long 19th century as Victorian Anglo Saxon". This rephrasing would be be incorrect.
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Apr 13, 2018
@tithenai @Julian__West Thank you, Amal!!! <3 Yes, I do that. I'm also an academic (linguist and folklorist) who started my academic work in ling after reading LoTR at an impressionable age. My thoughts about Tolkien are that of a linguist.
@tithenai @Julian__West And as a person deeply familiar with PIE and the rest of the stuff JRRT relied on, I want to talk about the critique the long 19th century as Eurocentric and PIE-centric and the place of Tolkien's work in that (hint, it's nuanced).
@tithenai @Julian__West (Eurocentric is not the same as Indo-European-centric, in my opinion) - but again, I feel that discourses about Tolkien's work went in other directions - where they also very much needed to go.
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