#Thread

A-Z of autism from a personal autistic perspective.

‘E’s - enlightenment and emancipation.

#AutismAcceptanceMonth
#AutismAcceptance
#AutisticPride

1/
When I discovered I was autistic, just over two years ago, my emancipation began.

It was enlightening to realise why so many aspects of life had been effortfully exhausting.

Even lovely, enjoyable events could completely drain me.

At last I understood why.

#AllAutistics

2/
I had often had to ‘get out of’ social events that I feared I’d find overwhelming.

And employment in roles that required a lot of social interaction left me exhausted.

This made me feel really pathetic.

But now I had an explanation I understood and embraced these limits.

3/
A lot of damage is done when people think we should ‘toughen up’.

It doesn’t work like that.

Once I knew exposure to stressors wouldn’t lessen their effect I avoided them as much as possible.

Recognising that I could regulate my own energy levels was another epiphany.

4/
Like so many aspects of being autistic what drains or recharges energy is uniquely individual.

This even relates to how an activity’s done.

Building Lego ‘free form’ energises me, but building models from instructions exhausts me.

It’s the opposite for some other people.

5/
I’ve been emancipating myself from expectations about how things should be done.

These pressures were external to begin with, but gradually became absorbed into the rules I set myself.

This was a self-imposed mental slavery from which none but myself could free my mind.

6/
You may have noticed the Bob Marley reference in the last tweet.

I endured a lot before discovering I was autistic.

Once circumstances permitted, I decided to give myself time and space to recover.

This was a radical act of self care.

It feels like a kind of redemption.

7/
Something I had to change was the way in which I required myself to ‘earn’ breaks.

There were times when everything felt too much, but I didn’t allow myself to step away until I was utterly exhausted.

When we compare ourselves to others we need to remember they’re not us.

8/
It’s a lot about equality.

Understanding how being autistic impacts on us, and ways in which we can participate on equal terms.

We need emancipatory education and employment.

In both spheres we’re usually disadvantaged by the environment, and how things are organised.

9/
Years ago I read a book by the sociologists Taylor & Cohen called ‘Escape Attempts: The Theory and Practice of Resistance to Everyday Life’.

It was about how human beings avoid facing up to ‘paramount reality’ through hobbies and interests, holidays, even sexual fantasies.

10/
Now I know I’m autistic I can see how vital my various passions and interests have been in escaping and surviving reality.

Sometimes I literally want to run away.

The term ‘elopement’, used in the USA, makes this sound quite romantic, but I get driven to it by desperation.

11/
That’s probably why I became a campervan person.

In the campervan I can create my own little ecosystem, and it’s even better for being mobile.

I can seek out environments that suit me.

As soon as Covid and work commitments allow I’ll be going on some road trips again.

12/
There’s no doubt that exercise makes me feel better, but getting motivated to do it is sometimes quite hard.

I get hot really easily so exercising indoors doesn’t suit me, I much prefer being outside.

I love walking, and if I ever struggle to get going Izzy takes charge.

13/
Izzy, my Border Terrier, is a good personal trainer.

She’s always up for a walk and won’t take no for an answer.

Whether we’re up on the hills, or by the sea, the exertion and exhilaration energise me.

Being close to nature also calms my emotions, and settles my mind.

14/
It’s partly to do with having plenty of space and not feeling encroached upon.

In pre-Covid days, when social distancing wasn’t a thing, I found it difficult if someone sat next to me on the train.

It’s hard to explain. Even their coat touching me could cause discomfort.

15/
My reactions to touch, noise, or smell sometimes seem ‘extreme’ to other people.

That’s because I don’t feel, hear, or smell things the way they do.

In the absence of autism understanding they may frame my responses as ‘excessive’.

But they’re not from my point of view.

16/
As a child I found it strange how many perfectly natural things were considered ‘embarrassing’.

We had to use code rather than the actual words.

Causing confusion was better than embarrassment.

Even now, in more relaxed times, there’s usually an embargo on being too open.

17/
Emotional expressiveness is a double edged sword for me.

I can be highly emotional and ‘too much’ for other people.

But I have to make an effort so my vocal expression doesn’t sound too ‘flat’.

Flat speech is equated with being boring which is very often not the case.

18/
Learning which words to stress and inflect was very tricky, as was injecting the right amount of energy into speech.

And I practised facial expressions in the mirror, as I couldn’t always tell what my face was doing.

Self-conscious, effortful communication gets exhausting.

19/
‘Enthusiastic’ crops up a lot in my school reports.

I can develop ‘enthusiasm’ for almost any subject, once I start to look into it.

Acquiring knowledge through research is a source of great enjoyment.

Like many autistic people I’m a natural, fact-finding, autodidact.

20/
I loved the motto of my second university ‘Do Different’.

Being exceptional (not ‘gifted and talented’, just differing from the norm) seemed rather desirable.

That was before I discovered how hard it is to get some people to ‘make an exception’ for you if your needs vary.

21/
It’s not just about how our needs are responded to, it’s about how we are allowed to communicate.

I caused “consternation” at an academic job interview by using visual images in my presentation.

This was at the ‘Do Different’ university.

It clearly wasn’t meant literally!

22/
Finding employment where I could play to my strengths, while doing something useful for society, summed up my career ambition.

Lots of jobs fitted this broad remit, but involved open plan working.

I was born a bit too late for individual offices and a bit too soon for WFH.

23/
It’s quite unusual to find an enabling physical and emotional environment at work, especially if you happen to be autistic.

Career survival often depends on putting up with sensory and psychological stress, or getting to be senior enough to do something about it.

24/
Overstimulation from working in open plan settings can trigger a meltdown.

And if my senses get too overloaded (sight, hearing, smell) my executive function switches off.

The more people there are, and the more crowded it gets, the more difficult it is to cope with.

25/
Before I realised I was autistic I had difficulty hearing on the phone in significant background noise.

It was assumed that this was simply due to age-related hearing loss.

Now I know that auditory processing issues make it difficult for me to separate strands of sound.

26/
When I was diagnosed with hearing loss I learned useful ‘hearing tactics’.

Sitting in the best place, using clarifying questions, asking for background music to be turned down, or off.

It involved being assertive, and it also depended on getting cooperation from others.

27/
I was shocked by how difficult it was.

One of the worst things is refusal to repeat what was said with a bad-tempered “doesn’t matter”.

It does.

Autistic people sometimes experience the same kind of micro-aggressions.

This frustrates us by excluding us from conversation.

28/
If we find forms of communication that work for us, including augmentative, alternative methods, it becomes possible to say what we want.

We’re no longer forced to struggle along in conversational confusion.

We can be autistically, authentically eloquent.

It’s empowering.

29/
I’m part of an #ActuallyAutistic resistance movement.

We stand against research that harms or seeks to eliminate autistic people.

We object to treatments designed to cure or suppress autism.

And we encourage each other to feel proud about being autistic.

#AllAutistics
30/ end

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More from @NortherlyRose

5 Apr
Because I love books, alliteration and #RachelJoyce I bought myself Miss Benson’s Beetle.

1/

#fiction
#paperback
#LifeEnhancing
The blurb at the beginning is beautiful.

#novel
#uplifting
#adventure

2/
There are even questions at the end.

Wish I was still running a
#ReadingGroup
#BookGroup
#BookClub

3/
Read 4 tweets
5 Apr
#Thread

A-Z of autism

From a personal autistic perspective.

‘D’ words (the disaster zone!)

#AutisticPride
#AutismAcceptance
#AutismAcceptanceMonth

1/
A lot of the D words used about autism are potentially damaging.

Deficit, disorder, developmental delay, dangerous, disaster.

We’re encouraged to feel a sense of despondency, to see ourselves as damaged goods.

Why else would people research ways to prevent or cure autism?

2/
The diagnostic criteria set out in DSM-5 evoke despair:

‘Deficits in social-emotional reciprocity.’

‘Deficits in non-verbal communicative behaviours.’

‘Deficits in developing and maintaining relationships.’

Replace ‘deficits’ with ‘differences’ and it transforms things.

3/
Read 20 tweets
4 Apr
#VirtualDogWalk

Today’s walk was designed to avoid the BH crowds, and it paid off.

It was worth picking our way along a muddy track and crossing a stony dry stream bed.

We didn’t see anyone until we nearly got home.

Blissful!

#DogsOfTwitter
#BorderTerrier
#AutisticJoy

1/
The last time we walked up into these woods there was still ice on the ground.

Today the sun was winning against a cool breeze and the trees were coming into leaf.

#Springtime
#woodland
#walk

2/
The silver birches shimmered in the sunshine.

The breeze made the treetops rustle and rattle.

#countryside
#nature
#trees

3/
Read 12 tweets
4 Apr
#Thread

A-Z of autism.

From a personal autistic perspective.

C (probably won’t be concise!)

#BeingAutistic
#ActuallyAutistic
#AutismAcceptance
#AutismAcceptanceMonth

1/
The first C I want to mention is ‘compassion’.
This is something autistic people are assumed not to have, even though it’s often something we have in abundance.

But compassion is sadly lacking in many services we access, even those specifically designed for autistic people.

2/
Lack of compassion for us may stem from people finding us annoying.

It may reflect the fact that autistic people are seen as having less social value.

Or perhaps atypical expressiveness makes people assume we don’t have feelings.

Whatever the reason, we end up being hurt.

3/
Read 34 tweets
1 Apr
#Thread

My A-Z of autism

‘A’

A personal #ActuallyAutistic
perspective.

A is for ‘autistic’, how I prefer to be described.

If you want to argue this point you’re not being ‘aware’, ‘accepting’ or an ‘ally’.

Using my preferred terminology is a way of asserting myself.

1/
The fact other people feel entitled to ignore autistic preferences and perspectives has a lot to do with ‘ableism’.

There’s an assumption that we lack insight or competence simply because we’re autistic.

We get spoken over a lot, so it’s not surprising that we get annoyed.

2/
We risk being unfairly labelled ‘angry’ or ‘aggressive’.

This happens in research studies, and in everyday life.

It’s partly to do with our direct communication style.

It’s also the result of our autistic needs being unmet, and this being seen as an ‘attitude problem’.

3/
Read 30 tweets
1 Apr
#Thread

Why I tweet the way I do.

An #ActuallyAutistic perspective.

Because I only discovered I was autistic aged 58, I spent most of my life trying to be neurotypical.

Suppressing autistic tendencies damaged the most precious part of me, my self.

#AutismAcceptanceMonth

1/
It wasn’t a case of
consciously setting out to mask, camouflage or compensate for my true self.

But I came to realise that functioning effectively alongside other people depended on it.

They told me to gesticulate less, speak less, and be less open if I wanted to get on.

2/
When I finally discovered I was autistic I started liberating my imprisoned self.

I was my own jailer but I hadn’t got a key.

I had to break the door down and let myself out before it was too late.

I’d been languishing there for years. Deprived of sunlight and fresh air.

3/
Read 8 tweets

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