Thread by @RB_Lemberg

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.
#ActuallyAustistic

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.
#ActuallyAustistic

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

Cont'd

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.
#ActuallyAustistic

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.

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