"Use Your Words."

Last Friday, Neurodivergetn K wrote a post on the phrase "Use your words.". I only read it today and, partly because I got triggered by this post, I am going to blow off some steam about this phrase. A lot may seem like a repetition of what Neurodivergent already said, but well, tthere can't be too many autistics speaking up against NTs putting their own arbitrary standards of normalcy ahead of our needs.

As readers who're familiar with me and my blog will know, I reside in a psychiatric institution. Its aim is rehabilitation. I've been on a ward that had an even more open rehabilitation-focused vision at least on paper, but staff there were much more willing to bend the rehab paradigm a bit to accommodate me than the staff on this ward are. Note that rehabilitation has two meanings in psychiatry, one in which the client is as much in charge of their care as possible, and the other where the client is trained to become (or appear) as normal as possible. I'm talking about the second meaning here, as I have absolutely no problem with the first.

"Use your words." As I wrote in a comment on Neurodivegent's post, this phrase is often accompanied by "You're intelligent" or "I know you can do it" or some variation on this theme. Let me address these follow-up phrases too.

"You're intellignet." And now what? Firstly intelligence is not the same as speaking ability. Second, what if I weren't intelligent? Would I be cut some slack then, or would my needs just not matter as much? A variation on this theme which I've come to hate almsot as much is "You're an adult". It has its own implications in light of my multiplicity, discounting part of me that actually isn't an adult. If I act like a child, maybe it's because at that particular point I am a child? I know the staff aren't going to buy into that since they've thrown out my DID diagnosis, but it's not like I'm any less or more multiple now that we call it BPD.

On a related note, telling me that my abilities are incongruent, isn't going to help me. I know they are. I know I'm sometimes able to do things that I can't do at other times. I know I'm able to do seemingly complex tasks but not simple ones sometimes. I know I can have quite spontaneous-looking, appropriate conversations sometimes and barely make any sense of my words at other times. Telling me this is not possible is denying the obvious. Telling me this is not appropriate is like telling a blind person to look harder because they can hear fine or telling a person who is night blind that they should be able to see in the dark because they could see fine during the day. (I know many night blind people are also partially sighted, but I'm simplifying the situatioon a bit.) It's not like developmetal disabilities like autism are any less real than visual impairment just because they're more difficult to understand and seemingly easier to overcome through behavior modification.

Let me talk about that now: behavior modification. I was going to write a separte post on that, and maybe I will write one more. Here's the thing: telling me to "use my words" will most likely get me to pull out a script. You didn't know I had them, clueless neurotypical who knows me just enough to see my non-autistic appearance but not well enoguh to truly listen? I may have somewhat more elaborate scritpts than the example Neurodivergent gave, but I do have them. This is why, when I'm interrupted or distracted while executing the script for telling the staff I'm distressed and need help, I often end up having a meltdown. And this script gets interrupted a lot of the time, oftentiems even by staff. They want exact explanations of what I want or need from them, even if they know pretty well what I need. I've sometiems gotten to ask for my PRN when that's not what I needed just because it was the shortest script in that part of my brain I could access. Asking for some quiet time with a staff member, which is what mostly helps me, is a much harder script to execute. Please know: "Can I say somethign/ I'm distressed," is not okay. It's got to be: "Can I please speak to you in a quiet place for a bit when you've got the time? I'm distressed." Sometimes I think it's NTs who are literal-minded.

The Attention-Seeking Theory of BPD

There is lots of stigma surrouding mental illness. Borderline personality disorder is no exception. In fact, it is among the more stigmatized illnesses. Particularly, people believe borderlines act out to gain attention, while there's evidence they do it out of a need to regulate emotions.

I am very thankful that I didn't have the BPD diagnosis when I was first hospitalized in 2007. I had done something that can with good reason be seen as attention-seeking - made a suicidal threat in public -, but I was realy not thinking of the attention I'd get with this. Besides, the kind of attention I got, did matter quite a bit. It is not purely for attention, even though my threat had a signaling function.

In like 2006, before any mental condition had been diagnosed, I was talking to my named support worker at an idependence training facility about my recurrent meltdowns. At one point she concluded that I did it for attention. "So we won't give you attention anymore. Don't think you can do this for attention." In reality, the majority of my meltdowns and acting-out behaviors have the function of either regulating emotions or overwhelming stimuli.

Another thing with the attention-seeking theory is that nothing really is wrong with attention-seeking. Of course, having a meltdown for attention is not appropriate, but it is not like ignoring the person is going to make them better. It will just lead to them giving up and developing learned helplessness. Rather, professionals and others need to help the borderline by providing the right kind of attention before behavior escalates. I strongly disagree with the ida that borderlines need to be left to solve their own problems. We lack skills in emotion regulation, and need to actually be taught these skills. When other conditions, like autism, come into the equation, it gets more complicated, because we truly do not have the ability to process ordinaryy stimuli. I, for one, have a hard time communicating when overwhelmed, so I can't get across my needs in an appropriate manner. It is further reinforcing learned helplnessness to just ignore me in such a state.

Autism and Justified Anger

On my autism treatment and acceptance, Autisticook commented by saying that anger in an autistic is often justified. She compared it to the situation where a wheelchiar user gets angry because they are faced with yet another two-step staircase that wasn't necessary and where nobody thought of installing a ramp. This made me think: are we overpathologizing anger in people with developmental disabilities (and mental illness)? Are we incorrectly assuming that anger is part of the disorder, while it's just a response to a lack of accommodations? This is obviously not a scientific discussion, as what is a reasonable accommodation depends on your perspective.

I just a few days ago heard about cognitive accessibility, where people accommodate their language, for exxample, for understanding by people with learning difficulties. I'm trying to find an accessible and understandable explanation of this, but can't seem to find one. What I understan dit to mean, includes for example using simple, straightfoward language. With autistic people, you may need to refrain from using figures of speech, for example.

What if you were dropped in a country where you didn't speak the language and everyone refused to speak English? Would you get angry? Quite likely you would. Now understand autism as communicating in a different language, too. Is it strange then that the autistic gets angry when you routinely refuse to make an effort to speak their language?

Autism is not just a communication disability. It's in a way a sensory disability, too. Imagine, again, being in that foreign country and everyone shouting at you for whatever reason. They also randomly shine a flashlight at your eyes for whatever reason. In addition, this country is rich on insects, and they crawl over your body all the time. Would you get frustrated? Sure you would!

We do not medicate wheelchair users for getting frustrated at the umpteenth staircase. You would not want to be put on medication if you were in the aforementioed country. So why do we medicate autistics who are irritable? It's probably because accommodating them requires a radical paradigm shift in what we always thought access was all about. Is it a more radical shift than the shift towards wheelchiar accessibility? I am not sure.

Autism and Selective Mutism Symptoms

I have not yet finised reding or even scanning Aspergirls, but I know that in it is a part on mutism in (Asperger's) autistics. I also recall that in 2003 or 2004, I was on an autism discussion board and selective mutism was regularly discussed. Not necessairly in the context of autistic kids or adults, but as a similar disorder.

Indeed, many autistics, myself included, have symptoms that could minmic selective mutism, where a person is able to speak in certain situations but not in others. A person cannot technically be diagnosed with both selective mutism and an autistic spectrum disorder, since when a person is autistic, their selective mutism symptoms are chalked up to that.

I do not know what the literature says about this, so I can only speak for myself, but I often get "locked up inside" out of anxiety. For example, in high school, when my tutor raised topics that hit too close to home, I shut down. However, I can also experience mutism when my thoughts get interrupted or I'm overloaded. Then, my brain shuts down in another respect.

So what can parents and teachers do about selective mutism in an autistic? What they did to me, both my parents and my teachers, was force me to speak. I remember one night when I was about sixteen, being made to stay up until I'd told my parents a certain rather personal thing. Let me say, thhis is not the way to go. Anxiety may play a factor in selective mutism symptoms. When you use force, this anxiety will only get worse. Also, if your child does not trust you enough to talk to about personal issues, that's something to work on first.

When the root of the mutism is not anxiety, still, force will not work. When a person is overloaded, the words and actions you use to make them speak, will often only overwhelm them more. Let them quietly think for a bit instead. You might want to ask what the autistic needs - quiet time to process, an alternative communication modality, etc. -, and the person may be able to indicate this in a way even if they don't use words. Sometimes, asking questions will help, at least with me, but sometimes, this will distract me only further from what I wanted to say.