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.
https://me-pedia.org/wiki/Spoon_theory
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.
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