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
I’ve been putting off this one about ADHD and autism as it's such a massive area. But thetwo conditions are often associated and go together (commonly referred to as Audhd if you have both).
As well as having commonalities they are seemingly contradictory, so you can see why some people might offer criticism and I have no answer for this. For example, autistics need their set routines with people whereas people with ADHD find it hard to stick to routines, so critics say 'oh well that covers every behaviour, doesn’t it?'. I don't have an answer except to say that people with one or other or both conditions tend to be at the extreme of such traits.
When I was diagnosed with autism, my assessor mentioned the possibility of ADHD (which I was also diagnosed with a few months later) but said they mask each other. This may also cause conflict where the autistic side of a person may need to be on their own but the ADHD side needs company and to be sociable. One is, in effect, masking the other making it difficult to know where one begins and the other ends. So if autism is predominant, the resistance to change will usually drive the behaviour whereas if ADHD is predominant then seeking change and resistance to routines will be predominant.
I think it can also change with age. For instance, when I was in my teens through to my 30s. I wanted change and to experiment with different things. I wanted to break out of routines - I probably made myself do it to some extent, and some of it was avoidance eg from certain jobs - but I felt it was the time to do it when I was younger. But as I’ve got older, I’ve reverted to type. Autism type maybe!
Another example is music. When I was a child I only had a few records (singles) which I would play to death, and the same when I got a new album so I'd have to listen to the same artists. I don’t know if this is an ADHD thing but for decades I've preferred variety in music and listening to different artists side-by-side. if I’m listening to my music on iTunes I like the surprise of not knowing what's coming up next and put it on shuffle.
Another example I was discussing with a friend in Messenger was about people who always holiday in exactly the same place and the same hotel year after year. Yes, I have gone back to the same towns or seaside places I’ve liked but I almost never go back to the same accommodation in the same place. I like to have a different experience each time.
Another example: my autistic self is quite a stickler for spelling and grammar but my ADHD self makes lots of errors and has a blind spot with some words and rules.
As I say, critics may rightly argue that we we all fit into one or the other, that's it's a catch-all. But although they're seemingly opposite, maybe they're two sides of the same coin, a bit like anxiety and depression which can both present very differently even though a lot of people have them both together. They may just have a tendency to get one more than the other although people use them interchangeably. But I think anxiety presents very different. I tend more to this greatly. When I'm in an anxiety state I’m on hyper alert, I'm jittery, my thoughts are racing, adrenal is careering around my body. While I’m not saying there aren't many symptoms for depression too, they're very slowed down. Then again, after a prolonged period of anxiety you can be slowed down too because your adrenal system is burnt out and spent. But it’s not necessarily that you’re depressed.
As you can see, it's all very complicated and I've not got my head around it yet myself, so I can see how other people might be confused too. Anyway, I’ll probably return to this as it's such a big area .
But what are your thoughts? Please do leave your comments below.
Recently, my sister and I were trying to book a short break away for a few days as we try to do most years. If you're able to get one, do they stress you? I know we’re lucky to go away on holiday but we always benefit from a break and nowadays it’s only very local. But the whole organisation of them and finding the right place is hugely stressful. I have other long term conditions, so one of my must-haves is a heated towel rail, preferably working separately from thecentral heating system!
But there are other barriers eg they all have late check-ins, usually from 4 pm and it’s all around the cleaning companies rather than the guests. Not only that but some of them want you to check out at an unearthly hour which is difficult if you have fatigue conditions. I know they have certain scehdules and some will be a bit flexible, if you're lucky, but they don't factor in people with long-term disabilities or chronic conditions. I have M.E. which is an energy-limiting condition and so need to sleep late afternoons ergo I don't want to be faffing about on arrival somewhere.
We had booked one which had free cancellation but turned out it had external metal steps to the flat so we couldn’t be doing with that. Another one we had to cancel because the toilet was on a different floor to the bedrooms. If you're on the people-pleasing part of the spectrum you will hate having to cancel. But needs must.
Then we booked another through a well-known holiday accommodation company who I ended up having a row with simply because they have no real provision for disabled people or those with energy-limiting conditions. It’s just exhausting battlinv with companies who don't seem to get it. With B & Bs you can at least drop your luggage off early and then go off somewhere until your room is ready and although you usually have to vacate rooms at 10 am on the day of departure you can leave your luggage in reception and pick it up later when you're ready to leave so you're not having to dash off early. I guess most people have their own transport but we don't.
Having said that there are downsides to B & Bs now which I’m sure many fellow autistics will relate to eg going down for breakfast with a lot of other people whereas with self-catering you can come and go as you please. Premier Inns were a good alternative for a while but they’ve changed a lot since the pandemic and our last recent experience in one was bad. The self-catering we’ve now booked was also pay on the day and no cancellation, so we had to take out insurance which we would normally do anyway but then going through all our conditions took two hours this time and the person speaking was pretty clueless about the effects of those conditions eg getting exhausted and agitated.
It seems to be getting more problematic every year so now we just go for a shorter break. Last year we went for a couple of long weekends as I thought it would be less stressful. But at one of the places we stayed they didn't leave enough toilet roll and it escalated into "loo roll gate" very quickly simply because they estimated what loo roll is reasonable to provide (not enough!) They shouldn't scrimp on things like this, it just looks mean.
You might ask why bother when the costs start to stack up but I usually have some good times even if I only go out for short times and it's a bonus if the weather is good, I can take some nice photos and go to a few nice cafes. But as I spend more time inside the accommodation it's important that it's warm, well-equipped (with workable heated towel rail!) and preferably with a good view. We are paying for it after all.
Do share your own experiences in the comments below.
I was just thinking the other day how I have a block with certain expressions or turns of phrase. I can look them up every time I hear them and then forget again. Is this an audhd thing I wonder? I’ll think ‘oh yes’ when I look up bit without a context or regular use I’ll forget again.
Two of mine off the top of my head are 'hostage to fortune’ and ‘Occam’s Razor’.
In fact, I looked up Occam’s Razor after doing the accompanying video and it’s something about finding the easiest way to do things rather than making it over-complicated. Hmm. It’s not surprising I don’t remember it because the expression sounds as if it’s something much more vital and grand than that!
I have many more like this but can’t think at the moment. No doubt I’ll add to this as and when. How about you?
When I made this video I was thinking about how I took song lyrics literally. I don’t know if I was behind my contemporaries in this respect. I know children have more concrete thinking so maybe a child-thing rather than an autistic thing when very young.
For instance 'Heard It Through The Grapevine' was one and I pictured a literal grapevine - probably not helped at all by the video on Top Of The Pops! I was about ten when the song was out. Adults would understand that it’s a metaphor and I’m sure maybe some ten-year-year-old children would too. Another example was 'Baby Come Back' and all the songs about babies when I was the same sort of primary school age and then it gradually dawned on my that they weren’t singing songs about actual babies but (usually) a boy singing about his girlfriend or someone he fancied.
One I’ve not included in the accompanying video was a song called 'Baby Jump' by Mungo Jerry (I was twelve by then and knew that it wasn’t a song about how well his baby could spring in a baby bouncer!). No, it was another line this time. One that goes ‘she’s got a beautiful form…’ and I thought it was ‘she’s got a beautiful phone…’ My older sister thought it hilarious but I swore those were the lyrics for years afterwards. (Nowadays someone might well sing about the most coveted iPhone but in those days people rarely had their own phone - just one landline per house if they were lucky). This example is more about a misheard lyric that makes as much sense as the actual words.
Another example: there was a band called Our Kid who had a massive hit in 1976. I think it was their only one, to be honest. I was living on Merseyside at the time, too, so the term ‘our kid’ was part of everyday use. I remember a time at a fellow student's house where he talking to my then boyfriend about ‘our kid’ (his brother) but I was trying to compute what he was saying in relation to the group. I remember butting in with something to do with the group and he just looked at me as if to say ‘what are you going on about?. I did feel a bit of a twit!
I'm sure I'll be adding many more examples as they come back to me.
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.
