A blog about all things to do with autistic authors and more. Talking about my own experiences and would love to hear yours too in the comments section
This is going to be my last blog on this subject for a while although I think it will come up in others and it's all pervasive!
But I stumbled upon some of Sally Cat's memes when Googling Demand Avoidance and thought I'd share some of my favourites or ones I particularly relate to or have in my life. But there are many more.
I might have things where I differ - we're all unique, after all. For instance what I consider ultra high demand or medium/high may differ slightly and my order hierarchy but they'd still be on the list!
To read more about Sally Cat and her journey here is a link to her blog:
In my other blogs and videos on Demand Avoidance I've not yet related it one of my stories and today I'd like to do that and give a couple of excerpts. I have spoken about my very first book Did You Whisper Back? and spoken about Amanda's problems with telephones which is central to the book. Amanda is actually schizophrenic and there is actually a link between schizophrenia and autism but that's for another time.
Below is the video version of the blog uploaded to YouTube:
In the 60s and 70s phones looked and sounded formidable. In Did You Whisper Back? we see Amanda has a morbid fear of them and I've recently written a short spin-off exploring this further, although it isn't published yet. I hope to publish it later this year.
But what Amanda fears most is not knowing who is on the other end and them making a sudden demand of her. Here is a short excerpt:
"Silent Callers didn’t scare her, no. It was fear of the voices. On the other end. Known voices. So-called school friends asking things of her, making social demands. Do you want to come to town with me and Pauline on Saturday? My mum says you can come for tea after school tomorrow. She did have one or two friends, but she did the minimum to keep them sweet. White lies. Or gritting her teeth for an outing once in a while, then recovery time from the effort of smiling and keeping up. She noticed how other children at school seemed to phone each other a lot in the evenings or weekends. Wasn’t it enough seeing them in school without having to spend extra time with them?"
Now, I've had this fear too. When I was a teenager I used to dread the person asking to speak to me. Nowadays we can ignore phones. But we didn't even have an answerphone in the 70s. You damn well answered them but if my parents were out I would frequently let them ring and ring. We could always make an excuse later. Oh did you ring? I must have been outside. Oh the ringer must have been switched off. Oh I’d just gone out. If I wasn't expecting a call I didn't mind taking a message for my parents. Again it was about someone making a demand of me and that thing of being put in a spot and freezing. Delayed processing again seems to come into this. I prefer making calls to receiving them as I'm more in control and can wrote down beforehand what I want to say and be prepared. I suppose that at least nowadays we can see who's calling and it's perfectly acceptable to ignore 'unknown numbers'.
Here's another excerpt:
"She recalls a time when her mum would ask her to take any messages if the phone rang when she was out at work. Amanda relays...how she would get home from school and be in dread of one of the friends phoning to ask her out that evening or weekend. She began to take the phone off the hook in that quiet time between getting home from school and her mother returning from work, remembering to return it to its cradle once she heard her mother’s key in the lock. Or she would carefully adjust the receiver slightly askew, so it looked as if someone had knocked it off by accident or not replaced it properly."
Now since joining autism groups I'm amazed to hear how common this telephonia is. Even with today's smart phone the demands are endless and excessive. Yes, you can switch them off to stop the infernal pings and bleeping but texts, messages and emails - they're all waiting for replies.
I probably haven't finished with the huge area of Demand Avoidance quite yet as I wanted to share some memes by Jenny Cat for those of you who relate to pictorial information (I do too).
As always I would love you to leave any comments below.
This is the second blog I'm doing on this subject as I wanted to discuss it more in relation to my personal experience. I say 'me' but in the two videos included in this blog I invited my sister who speaks with me (off camera!) seeing as we're both on this journey together! I will include them in this blog.
For me, part of Demand Avoidance is related to expectations and not letting myself or other people down. Rather than failing or falling short many of us find it easier and less stressful to avoid a thing altogether. So here are some examples in my life:
School & College: In the last blog on this subject I was looking at the way some autistic will make excuses not to do something to avoid demands. It dawned on me that I did this all the time as a child eg if a friend asked me to go out in the evening or weekend. I had a bout of severe stomach aches every morning when I was 7 and then again when I was 13. (I had just changed schools both times). But the stomach ache would genuinely get me out of school when I was 7 and I'm wondering now if that was my body's way of avoiding the worse trauma of a high demand situation like a new school.
I have always found that deadlines are, in fact, demands (like having to write a story there and then in the classroom or reading a passage to ourselves in class within a short space of time.) The shorter the deadlines the worse I became. So if someone gave a long deadline that was fine. I could get a headstart knowing how long it might take me. I always had to do essays at university as soon as possible so I wouldn't feel the incapacitating pressure of a looming deadline. I never understood those who did them at the last minute although many people with ADHD do work like this.
Work: a job comes with many demands eg on your time time and many other expectations. During my working life, I needed to be in control and especially of my time. When I was 18 and had finished my A levels in the summer I was offered a job in the Civil Service to start the following Monday at the end of November (probably a few weeks after the interview as the process was quite lengthy). But I needed an extra week to process it and prepare myself mentally whereas most would bite the employers hand off to start as soon as possible. I could never do that!
This is one of the reasons why I struggled with paid work. I perceived it as commitment phobia or performance anxiety or some other sort of anxiety. I always used to do voluntary work when I could because I was much more in control. I could choose my days and hours within reason and I could leave if it didn't work out without it affecting my income.
Of course, it depended on the voluntary work. Once, years ago, when when I expressed an interest in volunteering at the local Oxfam shop the manager immediately said’ how about tomorrow?’ I felt put in a spot. No I couldn't! I realised years later that this fear of commitment and inability to be spontaneous is an autistic thing: I like time to think about and process big decisions. Not just that, I need time to prepare and adjust. If she'd said 'when would be a good time to start?' that would have been much more autistic-friendly.
Medical appointments: Last year I needed to go to my local Minor Injuries Unit after suffering a trauma to my ribs and the nurse told me 'you need to get to the main hospital this afternoon'. I just burst into tears because the main hospital is several miles away. I would have rather gone home and do it the next day. I needed to sort transport. I needed to sort all the changes of clothes for one of my other conditions (hyperhidrosis) which needs advance preparation and so on. That was before all the stress of waiting around on an unknown ward in a big hospital. But the nurse was lovely. She told me to go home and get some lunch and go up there in the afternoon. I managed to book a taxi and I got my clothes ready and my sister came with me as she had done to Minor Injuries. It was still very stressful and my sister wasn't in the best space either but that nurse took some of the stress out of it.
Innocuous-seeming requests: For example If someone says 'can I ask a favour?' it fills me with apprehension or even panic as I don't know what they're going to ask of me. Will I let them down? Is it beyond me? Does it involve me going somewhere that is difficult or eat into my time?
Reading a book: I've spoken in a previous blog about the length of time it takes me to read a book and the processing delay. I'm now thinking there may be an element of DA here too as mentioned in the example above when we were asked to read and take in a passage or write a story in the classroom. There was an expectation to produce something as well as the demands and pressure of time. There can also be self-imposed pressure to finish a book. Someone who's given you a book as a present may say 'have you read it yet?' 'How did you find it?' etc. I always have a big backlog to read. I sometimes forget other people may be experiencing the same when they have bought one of my books (or had one as a gift) and then if they don't feedback the old self-doubt and Rejection Sensitive Dysphoria (RSD) can take over with plaguing thoughts of 'Maybe they didn't like it' etc.
Publication: for example, being published by a traditional publisher. Of course it was completely intoxifying when it happened to me between 1988 and 1990 but also all the fanfare was terrifying. I remember all too well the pressure of the 'follow up' book and probably sabotaged my chances of building on that early success.
Emails and online messages: these can feel demanding. I've noticed that often autistic people tend to write very long messages themselves and I'm probably guilty too but this is also a demand on someone's time and needing a response. Depending on who is giving them I actually prefer voice notes because I can hear the tone and nuances.
Writing Letters: in a recent conversation with the founder of Disability Arts Online, we were discussing old school letters and it reminded me of the 'thank you letters' we had to write as children. We were always very thankful for gifts or money relatives had sent but being asked to formally write appreciation letters to older generations just made my mind feel as blank as the piece of stationery in front of me. I guess it helped to have some sort of attractive stationery to write on (rather than my father's Basildon Bond!) and if the stationery borders shrunk the available space left to write on, so much the better. I desperately searched for things to write to fill up one respectable side of the paper at least - probably filling it with my list of presents and what I did at Christmas or on my birthday; spinning it out as much as I could and enlarging my handwriting. To say these were stilted and unimaginative would be a wild understatement. It didn't help that we had some cousins who made a work of art of their 'thank you letters' which my father proudly read out.
Feeling trapped: Agoraphobia is something that my sister and I have suffered from a lot in life. Panic attacks and the fight or flight feelings are exacerbated by the demands of a situation eg not wanting to be trapped in a crowded place, an office, somewhere all day, on a mode of transport, the situations are endless. Agoraphobics need an exit, a way out. So do autistics. The two aren't mutually exclusive and are probably associated.
Role Play: I was interested in reading that role play is a form of coping with demand avoidance. My sister and I would often put on an accent on the phone to deal with a stressful phone call. I felt better able and certain of myself if I was speaking Scouse or YorkshireI It gave me confidence. Sometimes my sister and I will speak in the voice of a strident woman we used to know who took no prisoners. Again, it helps to deal with a sticky or tricky situation. Such as 'what would X say?'
Demand Avoidance Strategies: as mentioned in my previous blog on this subject, one common strategy which is also an ME/CFS thing (and one employed by many with chronic conditions) is managing our activity or 'pacing'. It is illustrated by the Spoon Theory which many of you will no doubt be familiar with. You may have heard people talking about how many spoons they have or referring to themselves as 'spoonies'. You can read more about it in the link below in relation to ME/CFS.
But on the Pathological Demand Avoidance site there was a quote where someone mentioned not using up their spoons before a big event. This is definitely a strategy I have used for years. If I have a holiday looming, for instance, the preparation for it - both physical and mental - exhausts me and I feel in suspense for the week before and have to take it easy. This is something I call Pre Exertional Malaise. Whereas Post Exertional Malaise is well documented I think Pre Exertional Malaise and anticipation/anxiety before an event is less recognised or tangible.
This is a huge area anyway and next time I shall be doing one in relation to a piece of my own writing and telephones!
As always please do leave your comments below. I'd love to hear from you.
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
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."
"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."
“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.”
“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?”
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.
