Dehumanising Autistic people in academia

An article here from The Autistic Advocate looking at dehumanising language used by people who are supposedly trying to help us, yet it looks like we’re being studied like advanced primates.

The main purpose of the article is to publish a letter by Dr. Sophie Vivian, who wrote a letter to Kings College London attempting to counter the dehumanising language she found in old research that is still studied in relation to Autism.

Dr Vivian has often been horrified by the way that her Lecturers and the course material dismissed, stygmatised and dehumanised the very people they were studying and at points, whilst offering definitions of what makes Humans, Humans, actively excluded groups of people (including Autistic people) because of what they considered deficits, often based on very outdated and antiquated notions, that have long since been moved on from and re-understood.

People such as her can hopefully make some difference to how things are expressed, but the reference to where all the money goes is revealing, as that shows who the research may be actually for.

Most of the government money is funnelled into biology research, which I suspect is “cool” and high profile, leads to expensive equipment acquisition and I’d be surprised if there weren’t some pharmaceutical companies in there searching for new drugs to sell as “treatment”.

Support services are relatively unexciting and won’t lead to awards or status within academia.

This likely isn’t an aspect of academic research unique to the study of Autism. Even if money comes from “public” funds it is quite likely that private interests are pulling the strings…

How are you?

It’s a phrase that people say all the time, and answer with the standard response of their choice with varying levels of apparent honesty. Good enough, ok, fine, very well, fantastic. The response is usually related to the person’s personality.

It sounds very simple, but this question is often highly grating to autistic people on a fundamental level. Those in the neuromajority will uncritically accept this conventional exchange of words and accept it’s “just what you do” – despite knowing that the question is not asked expecting an honest answer.

I’m one of the autistics who will always be annoyed by it, and I realise there are two main reasons.

I’m wired for literal meanings, and a lifetime of dealing with people generally not saying what they mean has left me confused and eventually cynical. The “How are you?” social handshake is sitting at the bottom of that edifice of misdirection. My mind just asks why this convention is maintained when it is completely redundant in terms of information, and adds nothing beyond “hello”.

As a compromise between actually describing how I am at length or saying something short but technically untrue I might say “tired” or “ok” if I’m close enough. I’m never quite sure if my evasions or failing to come back with “and you?” come off as vaguely rude.

Perhaps at its mildest it’s a chore like cleaning the kitchen – vaguely unpleasant but generally necessary, and resulting in less satisfaction than having a clean kitchen afterwards.

There is likely and element of these rituals having to be negotiated in a state of severe spoon (energy) deprivation and there is something more pressing in mind than dealing with a verbal handshake.

Will it always be resisted internally or can I learn to say something like “good enough” without thinking about it every time? I don’t know, but for the time being – unless someone asks me the question and I know they really want to know – it will keep setting off a short moment of conflict where I wonder about saying something real or not.

Thoughts on the possibility of reducing inertia or friction

I’m talking about Executive Function problems or Demand Avoidance on some level.

While I don’t fit the PDA profile in terms of having aggressive reaction to demands, a certain amount of friction will discourage me from acting on reminders for attempting to form habits to help with organisation.

I’ll say something about my attempt to use the Bullet Journal technique, which I came across recently. It’s described here – and similar to many other organisational systems, it has quotes talking about it changing your life. These statements are off putting when you struggle to implement even a basic habit of any system, but I won’t get diverted from the main point…

The basic part of this is writing down any information that comes to you, by hand, in a notebook. The second element is actually looking at the notebook. Even with these apparently simple things, I have problems immediately.

With writing in the notebook, there is the problem of whether the book is nearby and if I’ve actually got a pen. In some cases I’ll have to go and find the notebook and find a pen. Yes, I could arrange things so the notebook has a pen attached and it’s in an accessible place, but the friction could be enough to sabotage the entire operation of Writing A Thing Down. When it came to actually looking what I’d written, I set a reminder. The problem was that again I might not be near the notebook and I kept dismissing the reminder, and then the reminder became like a nagging demand.

It’s a common thing I come back to with any life hack – it sounds good, but how the hell to I get myself to do it? Many times before I’ve come upon the friction which seems so intense when I’m trying to get myself from being primarily reactive and unreliable with things I’d like to do, to being more disciplined and actually getting a few Things done.

Returning to the notebook, the logistical physical issue of it not being possible to materialise the notebook in my hand has made Writing A Thing Down unreliable and not leading to Progress.

After thinking this through, I realise that a key factor I’m looking for is small friction reducing improvements that remove tiny psychological barriers. Software on computers or phones can have the same awkward barriers, make it a pain to record information or not give me the right view that allows me to make sense of the information or act on it.

One of the best things I’ve actually come across was in the Mac OS Calendar – a certain update allowed you to just type sentences to enter an appointment. This bypasses the need to fiddle with multiple data entry fields to describe the event, set the times and the reminders. Just today I was annoyed by the iPhone’s less slick entry method, where I have to fiddle with controls to get to a date a few months in the future. This can be enough to discourage me from putting a basic calendar entry in.

What I’ve also just discovered is that an app called Todoist, which was referenced on Zen Habits recently, has a similar data entry system, where you can write a short sentence to set up a task and set the time you want to do it, or if it’s a repeating task. Combined with the fact that I’m more likely to have my phone handy this might be a small breakthrough.

For some time I’ve thought there must be a way to create an app that does things exactly the right way for an Autistic person and this is one of those features. My theory is that finding these friction reducing techniques could be the thing we’re looking for – not whether we can make ourselves Do The Thing, but what exactly is making it hard, or demanding, without reverting to negative thoughts like “I should just be able to do it” or “everybody else seems to be able to make themselves go through lists of tasks” etc.

I imagine someone else can say these barriers I talk of are “silly”, but I have to not discount anything that might be hiding in the lower levels of “mind code” that are not considered in most organisational systems.

 

Thoughts on Identity First Language

I started referring to myself as an Autistic person some time before I even knew there was a convention with disability for referring to those with disabilities as “persons with X”.

I think it just seemed to make sense to me. I have also seen how an autistic friend struggling with her difficulties used to talk about how “her autism” affected her and this was affecting her self-esteem.

It’s intuitive that I’m an Autistic person and “autism” is fundamental to who I am and how I process the world. Internally if you separate the autism and connect it to all your difficulties, you set up an unresolvable tension in your own sense of self.

When Autism has been adopted by those who actually are Autistic, it ceases to be the original term indicating a disability. Autism is not a disability as such, but it is a difference that can be hard for non-autistics to understand. I can see that putting autism in a “Person with autism” context means that whoever you apply it to cannot accept themselves as Autistic properly.

So that’s why I would continue to use this way of referring to myself and suggest it is a better way of using language. Autistic people really need to be able to move beyond thinking of autism as a “problem”, and it does not help to have an inappropriate convention imposed from a “difficult condition” context.

Did diagnosis affect masking?

Although I was diagnosed as autistic a few years ago, there has definitely been a delay in me accepting that entirely and effectively holding on to that “high functioning” impression that made me feel less “disabled”.

People I was able to mention my diagnosis to were keen to point out how “well” I was doing. Only recently have I picked up enough information to know this was unhelpful because for years I have been partly holding on to that illusion of “coping” that appeared to separate me from other autistic people I knew of.

I attended a couple of support groups where I didn’t feel like I quite identified with other autistic people there because I was thinking of how “capable” I was. Most of them didn’t have jobs or had fairly menial ones. Were they actually like me? I was doing pretty “well” wasn’t I?

A major mistake at that time was not trying very hard to find other autistic people via the internet, and even autistic forums didn’t seem to grab me particularly. I knew about social media but hadn’t made the leap to connecting autism to that. I wonder if I was so weighed down by carrying on in my situation I wasn’t able to connect the dots.

I was too invested in “fixing” my approach to NT connections using the knowledge of what I found difficult.

The main point here is that without a firm encouragement from someone to say – go and search for #ActuallyAutistic on Twitter and Facebook, join some groups and these ones are good – I was stuck for a long time without any additional information and resonance with other experiences. I was still trying to internally work it all out just because I was used to having to do that.

I had to lose most of my investment in the NT world before I really stopped masking. In fact, recently as I’ve hit 40 I think my body has given up and won’t allow me to attempt masking on top of coping with sensory overload.

So I think diagnosis can only significantly affect masking in the short term if you have a frame of reference and find the right people rather than trying to get “advice” from the wrong people, usually the people readily accessible in your life. If someone isn’t right there guiding you, it’s a bit of a blind scrabble to figure out what you do next.

I may be repeating myself but it does seem odd that you can hang on to that idea of attempting normality even if it hasn’t been working and continues not to work for some years, even after you know you’re autistic.

MNDSGN – words with autistic resonance?

Thanks to watching a video of a live stream Agony Autie posted I was pointed at an interesting musician going by the name of MNDSGN, additionally intrigued as she mused on whether he was autistic given the words to his songs. Not only did I love the music, given that it was a combination of all the sounds I used to like from 80s funk an soul, but the words started getting to me as well. This is unusual for me as I generally avoid music with lyrics, partly because concentrating on words and music simultaneously is a bit of a problem.

The song she “stim dances” to is Lather from the album Body Wash

For each song, I’ll quote some words and put some thoughts afterwards.

Alluptoyou

Sometimes you’re thinking
What planet am I really on
Sometimes it ain’t clear
What vibrations that really are
You try your best to keep it moving
Dreaming about the day you quit losing your mind
It might be sooner than later

That doesn’t need too much interpretation as autism has been compared to being from the “wrong planet” many times. But the line about losing your mind also resonates.

Cosmic Perspective

All along you thought you belong
You’d have thought after coming from so far
That you could find a place that can call home
But you still can’t find the right way

All along you thought this was the truth
Accepted this life without proof
Somewhere along the lines
You lost your way

This is like feeling life isn’t quite working. You’ve taken what the world is supposed to be at face value. You’ve tried to be what the world seems to want you to be but nobody has explained why it’s supposed to work that way.

Use Ya Mnd (Twentyfourseven)

You gotta use your mind
Twentyfourseven

You gotta love your mind
Twentyfourseven

You ain’t gotta be a fool again

Not many words in this song, but means two things simultaneously. Autistic people have to use their rational processing constantly to figure out and adapt to the world, so we are forced to constantly analyse behaviour minutely moment to moment.

What the song also seems to say something about is caring for your mind – mental health.

Also, it’s using your mind to avoid being used (made a fool of). You don’t have to be fooled again. No!

Vague

Everything about your vibe
If we could see
Expression on your face
It’s so vague

It’s so hard to read even one little thing in your expression
It’s so vague
We need just a little clarity

This one is more self-explanatory.

I may be more receptive to songs that touch on feelings of isolation or confusion with life after having made some emotional connection with words here. But as is the case with good poetry, it’s better if it’s not too specific and can apply in different contexts.

Another perspective on masking

I have been affected enough by the #takethemaskoff campaign that I decided to actually do something about writing. It has been spearheaded by some remarkable autistic people I wasn’t aware of until a couple of weeks ago, among them Agony Autie, Neurodivergent Rebel, The Autistic Advocate, and Autistic Not Weird. I’ve mixed up the names of their pages with their actual names but you are more likely to pick up their public facing portals on Facebook…

In the interest of getting something written the following might seem a bit fragmented or like a draft…

I have never had a consistent mask or characters that I use to make people like me or be more accepted. My tendency has been to be dragged into being social by some specific people who have taken a liking to me. I have learned the hard way that this isn’t always a good thing. In some cases you might make a genuine friend, but often it’s a case of being targeted for someone else’s purposes.

The masking I end up doing is then an effort to mimic the other person for the sake of company. Attention from someone is enjoyed when you are largely lonely, but it can be a slippery slope into being far too dependent on the one person who happened to want to make an effort with you.

Masking for me is reflecting or summoning another person’s behaviour, maybe just a part of it. Something from my father, or mother. Some posture comes out from someone I observed.

This sort of effect was really made clear to me from the writings of Donna Williams, who explained characters in Nobody Nowhere. It was further expanded upon in Like Colour to the Blind, where she explains how she made an effort to shed all the accumulated mimicry from her life with her then-partner who was also autistic.

I read that book years ago and it’s taken me years to properly identify what to do about achieving the same thing. Why? The pressures of still having to keep a job and look after two children.

The habits of masking just operate when under stress. Only a great presence of mind can allow you to perceive what’s going on.

At the moment I am very anti-social because I have so little enthusiasm to use masking anymore. I don’t even want to start off a conversation with “how are you” with people I don’t know very well as it will start off the masking system.

Masking isn’t just about navigating small talk either, it is also suppressing emotional distress, resisting the intense desire to just get away from situations I’m forced to tolerate, the constant onslaught of noise and visual clutter and people moving about.

That tendency points to a core conclusion. The “compromise” with the world is all in one direction. I have to choose isolation because few people give me a way in. It feels like the way it is requires me to engage dishonestly or be ignored.

It emphasises the difference between me and the rest of the world. The actual me would like to share intense focus on something or talk in detail about psychology. I don’t know how people can be satisfied just talking about the mundane. Constant validation of sameness.

But you see the masking that’s either consciously developed or just forced upon me by trying to survive the world drains the mind so much that the intense interests that sustain me keep atrophying.

Masking is self-destruction. A negative death spiral.