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.

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.

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.

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.

How social media failed to work and later started working. Hopefully…

I was unaware of social media until 2007, when a person I’d been friendly with at University who’d come over from Hong Kong invited me to this thing called Facebook, that I’d never heard before. He was one of a small number of people I had something approaching a friendship with at the time.

I got the concept of what it was, and that I could find people I knew with profiles and pictures and comments about what they were doing.

I started to see people I’d come across at university and started looking up people I’d known from school. Then as it seemed to have spread through work already I added more people. It was a bit strange for someone who was still socially isolated. I had this naive idea I could use text communication to get around my difficulty with conversation, but I soon realised the downside that social media could have for me.

For example, I found all the boys who had been the group I sort of hung around with at secondary/high school and considered friends. At the time I was aware of them having more of a social connection outside of school, but once numerous pictures came out of the woodwork of them still hanging out, pictures from each others’ weddings – you know, evidence that they still wanted each other’s company a sort of realisation dawned that actual friendship had somehow been missed.

There was also the issue that almost no-one actually thought to look me up. It was just me trying to salvage the threads of a connection I obviously never had. The only chap who did message me and say hello wasn’t even one of the people I’d regarded as a friend as such!

To be fair, they were interested in hearing from me, but even so, I could see it was on the level of “someone I used to know but wouldn’t have occurred to me to get back in touch with.

It was the same as my life in general. It makes me feel like I was a sort of ghost floating by while other people had relationships with each other. Did I really exist as an entity in the minds of people I’d thought were companions at one point?

As time went on, I’d accumulated all sorts of people on Facebook I wasn’t interested in. Just junk from people’s lives. A colleague is playing a pointless game and this happened.

I started to drop the people I knew at school. Nobody noticed. I left colleagues at work for a while because it seemed impolite to drop them, but I believe when I was made redundant from that job I was tired enough of Facebook to completely delete my account.

So starting again, a load more people were added and I still thought I could get round normal conversation using text or reacting to things on Facebook.

What the FB feed looked like was pictures of people being normal, having friends, saying hey look at me with my friend eating food! Look how fun we are! We’re enjoying being normal and social and you’re just watching through this portal.

I deleted my Facebook account twice and re-added people, removed them again. I ended up with something like 12 “friends” and never looked at the damn thing.

What’s really annoying is that after I was diagnosed as autistic, I was so triggered and annoyed by Facebook I failed to notice it had moved on to provide groups for interest and even mutual support. I could have typed “autism” or “Asperger’s” into the search field for years and uncovered an enormous community.

In late 2017 it dawned on me that I could look up specific groups for autistic people and found people like me. Unfortunately, I had a bit of a difficult start and ended up dropping it again for a few months. Overwhelmed by the amount of content, got a bit too involved with some individual’s problems and didn’t find the right groups.

However recently I went back in again and it seems to be a lot more positive.

Yet I find it interesting that I was so embedded in using Facebook as a way to bypass social difficulties in reality, I completely missed the idea that there were so many people I could engage with online. I could hop over all the NT bullshit and just engage with autistic people on our real challenges that most NT people can’t be bothered to listen to or understand.

I think what went wrong with me and social media is an indication of how stuck autistic adults can get in the pursuit of being accepted by NTs and miss opportunities to connect with the right people. There must be so many more autistic adults like me out there who haven’t had the same epiphany and are still struggling to try and work their way through NT Facebook.

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.