Authism - autistic demand avoidance

Today I want to talk about something called Pathological Demand Avoidance which is strongly associated with autism and a massive subject so I'll do this in at least two parts. Now I really don't like the word pathological. It sounds sort of - well - pathological. And negative. You know, pathological liar. Psychopath. It sounds very early twentieth century and medical model.

I have heard that autistics and people with this condition have renamed it as a 'Persistent Drive for Autonomy' or 'Pervasive Demand Avoidance'. If you Google it you'll find very useful links from the PDA Society whose links I'll include at the bottom as I've mainly used sections from their site. The PDA Society happily use the P word as they say it's pathological when it's more extreme whereas some level of demand avoidance is very commonplace. But when it becomes extreme it's not a case of someone choosing not to do something but being physically unable to cope with the level of demands. Still, I would use excessive maybe (this may have been suggested elsewhere?) or another word. 

I prefer Demand Avoidance wherever possible. 

But the term "Pathological Demand Avoidance (PDA) was originally developed by British psychologist Elisabeth Newson ... and used to describe a group of children who didn't fit into the stereotypical presentation of autism recognised at that time but who shared certain characteristics with each other, the key one being a persistent and marked resistance to demands."

"The overwhelming anxiety of realising that a demand cannot be avoided, or that these forms of resistance have been exhausted, may result in meltdown or panic, potentially including aggression. These states are usually out of the person's control."

The proposed core characteristics most commonly cited are:

• resisting and avoiding the ‘ordinary demands of life’
• using social strategies as forms of resistance – for example, distraction, giving excuses

Other proposed characteristics cited include:

• appearing sociable, but experiencing differences in social understanding (such as recognising hierarchies)
• experiencing intense mood swings and impulsivity
• appearing comfortable in role play and pretence
• displaying dedicated and focused interests, often focused on other people.

The article made a distinction between 'direct demands' and 'indirect demands'. Direct demands are requests or questions made by other people or situations such as ‘put your shoes on’, ‘sit here and wait’, ‘pay this bill’ or ‘would you like a drink?'

In addition to these more obvious direct demands, there’s a whole raft of indirect and internal demands, including:

• Time – time is an additional demand on top of the demand itself
• Plans – advance planning may lead to increased anxiety as the time/date for ‘the plan’ nears, but equally the intolerance of uncertainty that is a key factor in PDA may make ‘spur of the moment’ activities tricky …
• Questions – the expectation of being required to respond to a direct question can be disabling
• Decisions – sometimes knowing a decision has to be made makes it a demand, or ‘options paralysis’ may set in if there are too many possibilities
• Internal bodily demands – such as thirst or needing the bathroom
• Thoughts/desires – internal feelings
• Uncertainty – research from Newcastle University showed that intolerance of uncertainty is a significant factor in PDA, with PDA autistics needing to know and feel in control of what’s going on
• Praise – this carries the implied expectation that the action will be carried out again or improved on next time, and so may not achieve the positive reinforcement that may be intended
• Transitions – the demand to stop and switch what you’re doing and also the uncertainty around what may come next
• Expectations – from others and of yourself
• Sensory overload & sensory integration difficulties
• Other people’s ‘energy’ and presence
• Things we want to do – like hobbies, seeing friends or special occasions – so not just the things we might not want to do like housework or homework.

I could relate to many of these and will be talking about this in my next blog about demand avoidance. Here are some quotes from some autistics who experience demand avoidance.

“The single most important thing to a PDA individual is their autonomy; to decide things for themselves and be in complete control of what they do and where they are going."

– Jo Richardson, Different not deficient

"If I put something in my diary, as soon as it's in black and white and it's a demand, I feel anxiety. I feel anxiety as I put it in my diary; I feel anxiety in the lead up; I feel anxiety on the morning when I wake up and that thing is in my diary. It makes me experience demand avoidance, even if it's something I wanted to do. Ditto putting a task on my 'To do' list – as soon as the demand is on my 'To do' list, it's a demand and it causes anxiety."

– Purple Ella, Demand avoidance

“I’ve found that by giving myself an ‘out’ then it is much easier to meet demands, because I know I can change my mind whenever I want. I’ll tell myself, ‘You don’t have to if you don’t want to’, this works quite well.”

– Riko Ryuki, Adult coping strategies

“Being actively given freedom and autonomy, through choices, self-direction, autonomous motivation, and respect of competence and consent, can empty the ‘demand cup’ bit by bit, and keep it emptier. Further to this, allowing plenty of demand free time and rest allows the demand cup to naturally empty.”

– Tomlin Wilding, The Demand Cup

“Direct demands should be removed from language wherever possible; it is vital to reconsider the words we use to communicate. So no 'need, must, have to' and instead much more of 'may, could, would you like, how about' etc. More of 'I wonder if we might be able to..' or 'I'm not sure how to do this, could you show me?”

– Steph Curtis, Strategies for PDA

These are all so relatable and a whole lot of similar scenarios and different ones which I'll do a separate video on next time.

https://www.autism.org.uk/advice-and-guidance/topics/behaviour/demand-avoidance#The%20history%20of%20and%20debate%20about%20the%20PDA%20label

https://www.pdasociety.org.uk/life-with-pda-menu/adult-life-landing/self-help-coping-strategies-and-therapies-for-adult-pdaers/

https://www.pdasociety.org.uk/what-is-pda-menu/about-autism-and-pda/

https://www.pdasociety.org.uk/what-is-pda-menu/what-is-demand-avoidance/

Please do let me know your thoughts by leaving a comment below.

Many thanks 😊

Authism - giving and receiving feedback/critiques for creative writing

Today I want to talk about the whole business of feedback and critique for your writing (or any creative work). 

It helps to know how it feels if you have experience of giving and receiving it. In my twenties and thirties there weren’t a load of people I knew who wrote (except my mother who inspired me to start writing books) but once I was a published author in my late twenties, friends, family or friends of the the family would sometimes send their stuff to me and usually asked for honest criticism for their chapters or plays etc. Seeing as they asked I’d give. But I was always gentle. It was far easier to point out typos, clunky sentences or ambiguous paragraphs which needed clarification. Most didn’t want more dramatic structural changes and it’s just as well because even if I did feel confident enough I doubt that I’d have spotted them. No, I was better at dealing with the individual trees than the whole wood. This I’m now thinking is an audhd thing. Focussing on specifics but not so good at analysing the whole. I can’t say this applies every time but as I take a long time to read a book (which I’ve covered in previous blogs) then it's easy to lose sight of the whole or when a story might be losing its way.

As I didn’t know many writers in the early stages of honing my craft the main feedback I’d get was from publishers and agents. I’d prefer it this way too as with people close to you it was like baring your soul. Problem with publishers though is they’re a busy lot. If you got any feedback at all you were lucky. You learned to relish positive or constructive rejections rather than the dreaded standard letter. 

As a recipient I know that a few constructive suggestions are worth their weight in gold. My idea of a good critique or a review is someone who picks out the positives or strengths and balances these with any weaknesses. It’s important to know where you might improve, otherwise how are you ever going to progress? But, as we all know, anybody in the creative business is über sensitive - that’s what makes us creative in the first place, right? And as autistics we know only too well what Rejection Sensitive Dysphoria can do to us. We don’t know it means to develop a thick skin and even if someone balances strengths and weaknesses we will home in on the weaknesses, won’t we?  I know I do!

Besides, while there is such a thing as objective criticism there’s a whole load that is completely subjective. I used to try and show I was receptive to suggestions for improvement by taking on board everything, only to find that when I’d incorporated those suggestions my book was still rejected.

So I evolved a general rule of thumb which was this: if only one person made a criticism about some aspect of my book then I took it with a pinch of salt (depending on whether I agreed with it or not and who was giving it of course). But if two or more people independently came to the same conclusion or offered the same criticism then there was probably something in it.

As for giving criticism, I prefer to do critiques or even better - feedback - which is a much broader concept. As autistic people it may be very difficult striking a balance between annoying pernickety things (like the exact year or even month when that record was in the charts!) and being sensitive. The other side of the autistic coin is we are often people pleasers and don’t want to upset people - we know what it is to feel the aforementioned dreaded RSD mentioned earlier.

Another rule of thumb I have is that if someone posts a work of art, say, or a poem or photograph on social media I will never offer a critique unless it’s asked for. And people will freely ask for it if they want it. They will say - do you prefer painting A or B? Do you prefer the font on book cover A or B? Can you suggest how I might improve this piece of writing, synopsis, pitch etc? That is absolutely fair game and what specialist FB groups are set up for. But a person’s personal Facebook page etc isn’t the place for art criticism however well-intentioned unless it's asked for. If you don't like it, just scroll on past. Some people do their creativity arts as therapy.

Do let me know your own feelings below and how you approach giving or receiving feedback for your creative endeavours.

Many thanks 😊

Authism - books by autistics versus books with autistic characters

I've been following discussions on this particularly in autism forums. I wouldn't say there's a dichotomy or that it's an either/or thing. But I do see many people in groups asking for good examples or role models particularly of female autistics in books and films. Before thinking about myself in these terms, I thought of Saga in The Bridge as a good example. But several years on I think maybe it was a little too laboured as if the actor was trying to hard to capture all what it is to be autistic. Having said that I did love her quirky character and her vulnerability. She certainly used her neurodiversity to solve crimes and thought outside the box.

I am a slow reader as mentioned before in previous blogs so I only read about a dozen books a year. But once I was diagnosed I did seek out books by autistic women about their own experiences or empirical research from female autistics coming from a psychology background as I do. One of the first books that was recommended via a forum was Sarah Hendrickx 'Women and Girls with Autism Spectrum Disorder'.

I found this a very comprehensive and insightful as not only was she autistic herself but she used to work at Axia where my sister and I received our diagnosis. After that we both sought out lots of books although I can't remember the titles of them all. In fact I probably only read the two, although I bought my sister lots,  particularly on ADHD. I think when newly diagnosed you can become voracious. 

But once I'd decided to chart my own writing journey I began to think of my own books and characters in these terms. I've previously done a blog about Cathy and Helen from my novel Fruit Woman. 

https://authisticwords.blogspot.com/2023/02/authism-helen-and-cathy-in-my-novel.html

I've  explored the synaesthesia of Elaine in The Colour Of Wednesday.

https://authisticwords.blogspot.com/2023/07/autism-and-synaesthesia.html

I've also looked at the trichotillomania and severe anxiety of Carrie in The Other Side Of Carrie Cornish.

https://authisticwords.blogspot.com/2023/05/authism-exploring-probably-autism-of.html

I had already included some children one with autism and one with ADHD in Savage To Savvy before knowing about myself.

 I have read novels too by other autistic authors eg Rosalie Warren whose books I can highly recommend.

But I don't require autistic characters necessarily, just exciting characters in great storylines. Rosalie has said that she, like me, has retrospectively realised that many of her characters actually have autistic traits. 

Other autistics want to see themselves represented more typically in novels and films to feel represented and validated, and I do understand this. I also did a video dialogue of this subject discussing with my sister (off camera!)

How about you? If you think of good examples where autistics, particularly women autistics have been well portrayed and who are very relatable then do mention in the comments section!

Many thanks.

Writing Goals for 2024

In previous years I've listed all sorts of goals but this time I'm going to stick mainly writing ones.

More of my memoirs - I began these nearly three years ago now and I've not even finished the first draft. I'm only up to 2005. I wish I could get to the end of first draft more quickly but maybe the autistic side of me likes to read every word. So it's taking me longer.

Poetry - I’ve enjoyed writing more poems last year and had a little bit of positive feedback. I would like to bring out a collection although it would be nice to be selected in one of the several competitions I’ve entered. Competition is fierce but I guess I’ll keep on trying a bit longer...

Flash fiction - I hope to do more of this too as it keeps the creative juices flowing and good to intersperse the lengthy memoirs with something brief and short. 

Arts council application - I'm hoping to get some practical support with the things I need help with eg I can’t get to book fares or anything much that isn’t online. It is limiting with long term health conditions and disabilities.

Medium - I hope to try this platform on the advice of good friend and prolific talented author Chantelle Atkins who’s having some success with it.

More of these 'Authism' blogs - I've still many more blogs to do for my autism and writing journey! 

iPod - I need to get a new one that I don't have to keep charging! 

Do you have any resolutions/new year goals?

Happy New Year all!

Authism and Psychology

In this blog I want to talk about autism and psychology, that is, autistics who are interested in psychology. I had no idea this was a thing until I was diagnosed with autism last year, very late in life. After an almost lifelong interest in psychology I had no idea just how many people (women in particular) are interested in psychology. A lot of speakers on the subject of autism have studied psychology to degree level or beyond or are trained psychotherapists. Many of the assessors at Axia (where my sister and I were diagnosed) are in fact autistic themselves as well as being at the forefront of research. 

I myself was interested in psychology since I was teenager (probably before if I'd known what it was). After O levels I was all set to to do hairdressing but then I switched and studied A levels at Southport Tech, and one of those was psychology. Then a few years later I went on to do my degree in psychology followed by several years as a Research Psychologist in the addictions field. I suppose it shouldn't really have come as a surprise when you think about it just why autistics are fascinated by psychology - we want to find out how people work and what motivates them! 

Here's an article I found online which addresses this:

"Autistic females, in particular, are often very imaginative, artistic, and highly capable in the arts. This can include interest and talent in writing, painting, drawing, sculpture, singing, acting, theatre, music, and so on.

Autistic brains tend to be very detail-oriented, leading to a tendency to be very good at science and analytical thinking. Whether or not an autistic person ends up in the sciences (and especially a career in science) largely depends on their upbringing and influences. Those who had the advantage of receiving good education and had the resources to attend post-secondary school often excel in academia.

One common area of interest for many autistic females is in psychology. Since they grew up feeling different from everyone else, they often look to psychology for answers — often reading self-help books and psychology texts long before their peers. For many, this leads to independent study and the development of a special interest in psychology.

Several choose careers that are related to psychology in some way, either as researchers, psychologists, therapists, school counsellors, or social workers.

While autistic people can be interested in a diverse range of career fields, they are over-represented in the arts, sciences, technology, and in psychology. Their traits and strengths may be especially well-suited for academia, and many find themselves to be lifelong learners — interested in pursuing formal and/or informal educational opportunities throughout life."

https://other-autism.com/2020/04/24/5-signs-you-may-be-an-undiagnosed-autistic-woman/comment-page-1/

I thought this was really revealing and interesting, especially as I've only found this out in my 60s after my autism diagnosis. But we're learning all the time. 

Psychology also relates to writing very much: there's rich material there about what makes people tick, their characters, motivations and personality types, how they are socially and so on. I realize now that I've gravitated toward and pursued a line that is compatible with the autism mind: psychology and writing, and marrying those two together!

Below is the video version on YouTube. Many thanks.

Authism and Unmasking (illustrated by a passage from one of my books)

Greetings all 

Today I wish to look at unmasking in autism and then explore this in relation to one of my books.

I didn't learn about masking in autism until I was thinking about exploring my own diagnosis. Now, post/diagnosis, I hear about it everywhere. Women and girls, particularly, are said to mask because there's more expectation on girls to 'fit in' socially. But I went to a webinar where the speaker also mentioned the fact that a lot of men mask too. 

Here are a couple of examples of masking in autism I found via a quick look on Google homepage:

Examples of masking can include, but are not limited to: "Mimicking the social behaviour of others, including gestures or facial expressions. Deliberately forcing or faking eye contact during conversations. Hiding or underplaying their own intense interests." 23 May 2022

'...(Autistics) may ... also adopt rehearsed catchphrases, such as “good grief”, “interesting” or “that's amazing' 27 Jun 2023

"If you notice that you tend to look to others before deciding what to do in various situations, you might be masking by mimicking their behavior. If you do not feel like these choices come naturally to you, and you instead try to copy what you see, you might be masking your social behavior." 22 Dec 2022

Now I remember acutely an incident when I was a child and finding it hard to make a choice on my own. This of course may have been inexperience and deference to an older sister who to me seemed assured and confident and knew how to made the right choices. But she called my bluff one time asking me which of two items I preferred (I've long forgotten what the items were). But she said she preferred A. And I said 'so do I'. Then she said she preferred B and I agreed. Then she changed her preference back to A again and guess what? So did I! Now it was fairly transparent to her, several years my senior, what I was doing. But I hadn't known. Of course it was a valuable lesson to me.

As for facial expressions and other catchphrases, I'm guessing all people - allistic and autistic - have caught themselves doing this. After all, everyone is an imitator to some extent and very few people are creators of new catch phrases. But I guess it's the extent to which we do it. And also the consciousness and confidence with which we utter them. They can soon become our own. We may master them so well, we can't remember whose catchphrases we adopted in the first place.

As for unmasking, as I was only diagnosed with autism in my sixties, I think I gradually began unmasking as a natural ageing thing. I began doing it both consciously and unconsciously probably from my thirties onwards. There are of course areas I no doubt still mask: because such characteristics and idiosyncrasies have become such an ingrained part of myself and I've claimed them. I do remember though consciously trying to be less of a people-pleaser and speaking my mind a bit more, from my thirties.  There was someone I'd been a good friend with since my teens, let's call her Penny. She had very distinctive quirks and used her hands a lot as she spoke (she may well have been undiagnosed autistic too). I unconsciously waved my hands around a login her presence. But years into our friendship she said I was the only friend she'd not fallen out with or argued with. I instinctively knew why. It's because I avoided anything contentious and—like people pleasers everywhere—I wished to be liked. But by my thirties I gradually voiced my own views to Penny and like other friends of hers who'd gone before, she didn't like it. It disturbed the equilibrium of our friendship.

In my first novel 'Did You Whisper Back?' I drew on my own experience as a young woman to describe Amanda's feelings. Amanda is schizophrenic (the parallels between autism and schizophrenia is for another time) but here are some passages from the book when Amands has just gone to work in a hotel and is battling with the social expectations from the other workers her age:

"Their arguing and swearing embarrasses Amanda, not through any offence it has caused her...but because she is herself incapable of partaking in such a row...She has never quarrelled with anyone here, or they with her. Arguments are for family and friends; it is only acquaintances that are always agreeable and polite with one another...She takes such care to fit in with their every move. She thinks how every personality has a thousand different sculptors working on it year in year out, fashioning, molding, and shaping, to make it what it is. She too can feel her own being carved and chiselled at every day by her friends, and the worst thing about it is that Marjie has left her odious stamp. In Marjie's presence, Amanda feels her voice drifting into that self-assured sing-song. Here and there she catches herself swaggering along the corridor, smiling that sweet-and-sour smile.

She feels she is little more than a conglomeration of them all, though they don't seem to notice. They have no need to argue with her because it would be like arguing with themselves: she is just a mirror for their reflections. She doesn't know how to delete them from herself and decides it is simplest to keep up the pretence."

Did You Whisper Back

There's just one other thing I want to say here about unmasking. I never ever used to 'lose my rag' in public. It seems strange that as a child I kept a lid on it but then it just burst out in middle age. I have had so many meltdowns since my forties I've lost count. They're usually very public too and when my comfort is threatened eg when I used to travel in trains or the train was late. Also being kept waiting to see the doctor or the dentist or anyone like that.

The blog on YouTube

So, that's all for now. But do share your own experiences of what unmasking means to you.