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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excluded groups of people (including Autistic people) because of what they considered deficits, often based on very outdated and antiquated notions, that have long since been moved on from and re-understood.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…

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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.

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Accepting my actual relationship with social media

One of the few posts I’ve written so far was talking about how I hoped to have a kind of balanced social media participation – which for me also includes online forums, or at least the one that I bother to go back to periodically. Somewhat like this blog at the moment, so I’m just writing stuff and hoping it’s interesting…

I had hoped that finding autistic groups would make it easier to stay engaged and interested in interactions in general, just because I would be interacting with people with similar traits to myself. What I have learned is that my essential capacity for interactions is the important factor. This is something that hasn’t changed even if the way I use social media has.

Since I have had regular access to the internet, there was one forum that I kept going back to, and it has been the only forum I have sustained any presence on where I’m actually recognised as part of the community. On the other hand, I have always forgotten to check it for long periods, return for a bit and then leave it again.

The same thing happens with Facebook. I can log in, have a pleasant time making a few posts or reading what is in a few groups, remember that it does make a difference to check in with some similar people, and wonder why I keep forgetting to visit again. Yet the truth remains that I do stop looking at it for various reasons.

Firstly there is a problem with the site layout being somewhat wearing to focus on key content, and not ads, unhelpful friend recommendations which are likely to be people you don’t know keep turning up. There are browser plugins to help here but only so much. I’m also a little nervous about Facebook as a company holding huge amounts of my data.

There is also always overload. There is too much going on and I can’t process it all, and I get weary after half an hour. What I feel is being drawn into an manipulated by a thing that’s trying to suck in my attention.

Facebook has come off my phone because it becomes a distraction. I’ll be checking it too often and finding I’ve accidentally spent 20 minutes looking at posts or spending way to long replying to something. Then I remember what the site does – it uses people’s drive to find connection to push advertising.

I find myself wishing for another platform with no crap and focused on connection primarily, as opposed to promotion of business or music acts or something else.

The overwhelm builds up and then I put it out of my mind. I also find it hard to get much from reacting to memes and posts with a lot of “OMG me too!!!” responses. I’m not knocking the value others might get from this, but for me it ends up being empty. It could be because I’m a bit of a grumpy cynic a lot of the time, or I’m actually not hugely social.

That is a fairly obvious conclusion – I get some occasional positive benefit from social media as I do in real life with the time I spend with family or close friends. Fundamentally I’m not particularly sociable or particularly interested in sharing everything straight away.

This is perfectly fine. I’ve learned that within the group of autistic people there are many levels of sociability. Some of us have a special interest in people and sharing many details of our experience. There are also many of us somewhat on the edges of social media with a bit of an awkward relationship with it, or we don’t need it so much and the sheer volume of data causes us to bounce off it.

I think it’s enough to know it’s there and I can find people who are pleased to hear something from me or see me pop in. It’s how I get the most from it, without it becoming a burden to try and keep up with everything.

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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.

 

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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.

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Musings on Autism and Autistic as terms

Autism, Autistic, the Autism Spectrum – I have been thinking about how useful the word is, like other words that people hang different meanings from.

According to the information in Wikipedia, a Swiss psychiatrist came up with the word in the early 20th century and it was used in the context of Schizoprhenia. This included “autistic withdrawal of the patient to his fantasies, against which any influence from outside becomes an intolerable disturbance”.

This is not what I understand the word Autism to mean, because I don’t think autistic people are confused about reality. We may get absorbed in a sensory experience, but it isn’t hallucination or delusion.

So, if the word we’re using to describe ourselves doesn’t come from a context that relates to what Autistic people are like, is it a useful word?

But is there a problem with a definition of Autism? I feel a tension between all the things expressed as “deficits” which can be traced back to things that are actually considered positive. And Autism suggests self-absorbed, when most autistic people I am familiar with are very engaged with the world.

In fact, are the “deficits” just not developing in the same way or speed?

It all comes back to whether it’s perceived as engagement in the world that makes you fit in at the right stages, and “functioning” defined in narrow terms as “being conventionally successful”. When it comes to “success”, what is the measure?

Take communication – the autistic communication style is naturally direct, truthful and often comprehensive. When you come up against the way most people behave, this ends up being rude, hurtful and “oversharing”, say. People admire those who expose awful acts and reveal the truth, but generally speaking, typical people prefer to be lied to to have their feelings protected.

I end up being mute in many situations because of the negative reaction to unfiltered truth which can be seen as “depressing”. Truth is often depressing, that’s just the way it is. So my communication “deficit” came about as a reaction to a world that doesn’t want honesty most of the time, and I have to identify very specific cases where I can communicate in my natural style.

How about intense focus and interests? People adore successful creative people who have an intense, almost obsessive interest in one thing. Yet you look at the diagnostic criteria and see this described as “abnormal”. If the person making the judgement doesn’t see the interest as “useful” then it’s a “problem”.

So back to “Autism”. Am I a person with “autism”, where autism is this “difficulty” I “manage”. Or am I Autistic with actually quite interesting abilities that get ignored or misunderstood.

Is Autism actually fine as a term, but it simply has to be claimed by actually autistic people? Can we say the “self” part is “self-aware” and not “self-ish”. If I say the apparent self-absorption is related to the response the world has to us, have I reversed the original intent of the word?

I’m not sure – “Autism” still seems to represent a result of being different, rather than describing what we are, and what our abilities are.

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Spectrum Women – an attempt at a review

I finished reading through the book this morning and wanted to put some thoughts down. This may not end up seeming like a typical review, as there is so much in the book, I feel I’d like to say something about all of it, and I’ve got the autistic bottom-up tendency that would probably result in me summarizing the points in each chapter. In that case, the reader may as well just go and buy the book.

Which you should. Look it up on Amazon, or get it direct from JKP.

So in the interest of getting something written, here are some impressions of mine, although I had visions of some “perfect” review that could express my detailed reactions…

Starting off, Barb Cook’s story resonated for me because, unfortunately, I have a history with quite a number of dark periods in my life. As someone who self-medicates for anxiety, fortunately, limited by my capacity, I understand where her story of addiction is coming from.

I was also impressed by her honesty in describing how her innocence in social situations led to her being used by men. I’m also familiar with low self-esteem leading one to accept the wrong people just due to loneliness, and it’s a really self-negating space to be in.

I have strong feminist leanings and think now that autistic women can end up with the worst deal because they are born into a gender that is already at a disadvantage, even after decades of feminist campaigning. Autistic women end up with the added difficulty of often not learning self-protection and being alienated from NT women at the same time.

This connects me to Liane Willey’s chapter on safety. There is so much in the book that young autistic girls need to read to avoid abusive relationships and being manipulated or harassed.

At the risk of getting too negative, I have to get on to the positive aspects with respect to forming a better sense of identity, self-esteem and enjoyment of life.

Christine Jenkins and Renata Jurkevythz reminded me that autistic intense interests are very important for recharging. As a single parent, I have often unwittingly forgotten to reserve time for interests that I have historically immersed myself in. It can be the case that one gets so worn down from simply trying to get through the day, it can be an effort just to remember you have things you love that will make you feel better.

This is linked to self-care, which Becca Lory, Catriona Stewart and Kate Ross write about.

I’m flicking back through the book to remind myself what is in the chapters and had forgotten what Catriona wrote about “identity care”. Also assertiveness. I’ve had trouble with both, having periods where I’ve convinced myself to deny my own interests due to wanting to “be like the other grown-ups”. In fact, asserting your identity is as important as being able to assert you need a bit of a break from sensory overload or accommodations in your work environment.

This is what Becca talks about as well – have you lost track of yourself?

I appreciated Kate Ross’ basic discussion of hygiene, although the female aspects of it obviously don’t apply. I’ll continue this paragraph after I’ve had a shower… Right, bacterial colonies have been evicted and I have fresh undergarments.  I realised it was helpful to have in mind a detailed explanation of what is actually making you smell bad. I know my mind wants proof of why you should do things rather than people just saying it’s “obvious”. Although sometimes hygiene is just forgotten when one is having mood problems or just generally distracted by something more interesting like attempting to write book reviews.

Kate’s section on executive function is rather handy too. I’ve had managers during my working life scratching their head about why I needed so much supervision or took much longer than expected to do something. And the last line of that section is a really good one to remember:

I’m not lazy; I have executive function and task inertia difficulties. How can you help me?

It’s both a good thing to repeat for your own self-esteem, and a reminder that often people are glad to help, and you are only making more work for yourself by struggling quietly until deadlines loom and things become more stressful.

This seems like a bit of a meandering “review”, and I’d like to mention all the contributors but you can find that out by buying the book immediately. I hope that autistic men are not discouraged by the title and think it’s just for women. Much of the book is about experiences specific for women, but this is great for learning about the problems women face, and that in many respects there isn’t a huge distance between the way autistic men and women think. Autistic men are often less masculine and somewhat alienated from typical men (I think, I’m one of them), and I’ve realised recently that Autistic women can end up feeling the same way. A lot of us are inhabiting this non-binary space somewhat detached from our physical gender, so how far are “women” in a separate tribe?

Currently it is very important to have a book reaching out to autistic women, who have a hard time getting diagnosed, are often told that the can’t possibly be autistic and have to fight for months or years to get confirmation they need. For those who are unlucky enough to be unable to find a good assessor and can’t afford to pay for assessment will at least have a very good reference to understand themselves and where to find people that understand them. Thanks to the internet it’s possible to say hi to everyone appearing in the book and get to know them over time through their writing, videos, and exchanging comments on Facebook or Twitter etc.

Thinking more philosophically, I am wondering about a further opportunity to subvert gender stereotypes further in the future, because although the book says “Spectrum Women” I see a lot of what is in the book as relevant to “Spectrum Person”. It might be interesting to have a book exploring the fluid sense of gender among autistic people, or it might already exist and I haven’t found it. Well, nearly – this looks promising, yet I’m thinking on more philosophical lines rather than sexuality, which to me often seems like a barrier to close friendships between the sexes, but I’m going off topic.

Yet it’s just an example of how thought-provoking this book is, especially if you haven’t read that many books by autistic people. It has inspired me to find more after having a period after diagnosis where I have struggled to connect with any other autistic people or experiences.

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I’m somewhat disorganised, but do I need to optimise?

I’m referring to those executive function problems that seem to completely stop you doing boring but essential tasks like cleaning up in the kitchen, updating finances, putting away laundry, just to give a few of my examples at the moment.

I was considering, what’s the optimal solution for an autistic person, or just me.

Then, my mother emailed me an article about optimizing, by Leo Babauta. He was the minimalist influence on me setting up this blog, as I’ve thought for some time that autistic people could get a lot from a minimalist approach.

The article reminded me that I don’t really want to optimize, I just need something that works better. In fact, using the word “optimal” and trying to get there could be a huge barrier to actually taking a step, so really bad advice for someone with executive functioning difficulties.

It should be enough to have something that’s working a bit better than what you were doing last month or last week.

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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.