Authism - revisiting demand avoidance, social awkwardness and phone phobia with quotes from 'Did You Whisper Back?'

 

I have spoken about my book 'Did You Whisper Back? previously. The main character, Amanda, is actually schizophrenic but there are many  similarities between the two conditions. Bleuler, who coined the name 'schizophrenia' also coined 'autism' in Nazi occupied Austria. "Bleuler had only meant it to be coined as a temporary symptom of schizophrenia. It was only under Nazi rule, in the work of Hans Asperger in the 1930s and 1940s, that those who came to be called autistic were singled out as having a unique way of being..." (Empire of Normality by Robert Chapman).

I wonder if Amanda was presenting with the same symptoms today whether she would be diagnosed with autism instead. 

But when I first started penning the book in the late 1970s I didn't know about the commonalities.

Amanda withdraws into her fantasy world to make sense of the confusing world around her. She has difficulties in social relationships, and likes to spend time in her own. But she leaves Liverpool and goes off to work in a Devon hotel in search of her 'imaginary twin sister'. While at the hotel she tries to mask and fit in with the other hotel staff but the finds it more and more difficult. I now interpret this as the exhaustion of masking. She feels as if the characters are being superimposed on her and feels an amalgamation of them all. Like they're holding a mirror to her and she's reflecting them. 

When she returns home after the season has finished, her mother is pressing her to get a job. We see Amanda's thoughts and how she is struggling under the weight of the demands:

"Nag, nag. Situations Vacant, clean the bathroom sink, clean the whole bathroom, men are coming to repair the central heating. Make them a cup of tea, white two sugars, talk to them.  Each separate message pounds out with increasing tempo – this way, no this way, anniversaries that way, signing on over there, job applications here, Social Security, tidy the room, feed the cat, answer the phone, the phone, shampoo's running low, we have visitors, visitors, smile and be polite and help bring in the plates.  As soon as some jobs are safely cleared away, a whole new cluster rears its ugly head. What would a flat be like with rent and bills and the rest of it? She lives an endless list as it is."

Then there is the fear of the telephone and it's incessant ringing. As I've said in a previously blog, in those days there were no answerphones, you had to answer them or wait until the stopped. There was no caller display to know who was calling. No mobiles. Even autistics  today struggle with the demands mobile phones bring. All that sensory overload, all that pinging. But at least we have a choice to put them on silent. It's that whole thing about talking, having to think what to say. Thinking on our feet.  Then again we have that choice of communication. We can use voice notes. We can answer in our own time to a certain extent. We can message or text or email.

But there is a quote from the book where Amanda is having a breakdown and the phone looms large in her life:

"What? Still no end to the bur-burr noise, ringing with rekindled fury from the vaults of somewhere? She runs upstairs in terror to her bedroom, blocks her ears, buries her head beneath copious padding, turns her radio up full blast but nothing will dam the current of ringing. They congregate again, bending over her like weeping reeds. Does it puzzle them to think a telephone has been deliberately taunting her with its rhyming echo for twenty-four hours or a week? Perhaps half a lifetime?"

I will be returning to this as I have written a spin-off to the main story.

Many thanks.

Authism - discussing learning harmony parts with Audhd

Today I wanted to take a break from talking about autism and writing and instead talk about autism/adhd and music, specifically to learning harmonies. Music has always been a huge part of my life and I’ve always loved to sing along to songs that I love. But I wondered whether fellow autistics or people with ADHD or both have also found this to be a challenge. It was something I couldn’t do for ages and when I was a child I thought I was incapable. Yet I’m quite good at remembering tunes and they sort of stick in after hearing them once or twice.

But I needed to hear individual harmonies separately to begin with. I grew up hearing my family singing harmonies but I didn’t read music so could only learn by ear. Hearing everyone else singing their harmonies sounded lovely but I couldn’t pick out the harmonies when everyone was singing together. This perhaps isn’t so unusual especially when I realise that teaching harmonies takes a lot of time, learning and processing before the song is embedded in memory. It’s something that needs to be repeated over and over and I don't remember being taught this growing up, so it flummoxed me. 

It took me years to get the hang of it and I had this negative idea that I just couldn’t do it. I’m now thinking it’s another of those slow processing things or that I just wasn't taught so I just gave up, convinced I couldn’t hold a part. If I was anywhere singing as a group this was probably reinforced further.

I learned much later in life that if I was completely surrounded by others singing the same part  I wouldn’t get distracted by the other people singing a different harmony. But it took me ages not to get distracted or drawn in by another part; to be able to filter out the other harmonies.  

It wasn’t until I was in my early 40s when I went to a small singing group that it gradually began to click for me. There were only a few of us there and many weren’t very confident either, so I excelled a bit compared to my former self because I went regularly and got to know the tunes. I felt  I had to belt out the part I was doing because there was such a small handful of us somebody had to otherwise we would all sink together. This sometimes fell to me. I did it so I knew where I was going and could keep on track. If I faltered I would lose the harmony too. Other people followed me and that boosted my confidence as did getting positive feedback from the group. Maybe I was better at this than I thought.  As I say I’m quite a quick learner and have a good musical memory. As a child I only had to listen to song on the radio once or twice before the tune would play around in my head all week.

After the small group, I went to another small group and then my sister and I progressed to a community choir where were was a much larger group and longer more complex songs to learn. There would be many people in each different part, whether soprano alto or bass and it was easier to stick to the particular harmonies. There  is confidence in numbers so if you had lots of people around you, you wouldn’t be pulled to another part.

I no longer go to community choir. I went for many years but because of health issues I don’t anymore. But then lockdown came and my sister and I joined an online singing group on Zoom. It meant I could indulge my love of singing and harmonies again. Sometimes  we can get a three-way harmony going if the choir leader or guest singer does one part and my sister and I are doing two other parts. It’s the next best thing to singing in person.  I can hold a part on my own if I know a song very well but sometimes it's more challenging; sometimes I need to get to know the part inside out and if I miss the beginning for coming in, I have to start again. This doesn’t happen much in the online singing, but if I’m trying to do one at Christmas I have to begin again if I miss the part where I come in. I try and learn at least one new  harmony every year to a Christmas carol because I love Christmas carols. I love the harmonies and this is where online recordings come into their own. 

Anyway I just wondered how other autistic or people with ADHD find this. I know some of you will excel at this, especially if it’s special interest or if you like me it’s just taking you longer to get there to do harmonies even though music and songs and melodies for me have always been massively important in my life.  I’d love to hear your feedback. 

Authism - oversharing (poem)

Hello 

I wrote a poem about oversharing in the summer which I've shared on Facebook and Instagram as well as reading on TikTok. Now I'm posting here.

I think I now overshare - not only because this is the way we all do it these days on social media - but also to make up for the fact that I used to undershare or not share at all as a young thing. So I'm probably over-compensating, since I've found my voice!

How about you? Do let me know in the comments below if this resonates at all. I always love to hear from others.

Authism - more or less neurotypical with age?

I wondered if we become more neurotypical as we get older? Less? Or more in some ways, less in others.

In some ways I feel I have become more NT and it's just taken me longer or a lifetime to learn the rules. You know, it's been a gradual process but I think from my forties onwards I sort of got how neurotypical rules work but it's just taken me longer to process. For example, the things you're supposed to say in social situations, the words to use, how to act. Even now, I have to think sometimes but some of it comes so much more easily. I think back to being a child and young person and how bemusing it all was, how other  people were so much more at ease with each other, the spoken word and knowing what to say and how to be. I mean, it still does bemuse me at times but not nearly as much. I usually know what's an insensitive thing to say or what's an acceptable thing to say in a situation because of 'patterns'. We're supposed to see patterns, right? So when we've been in a situation many times before we may think 'ah yes, I recognise this, this is how it goes, and this is what I need to say'. 

On the other hand, unmasking might make us more blunt and upset more people because we're tired of masking and people-pleasing. So again, nuances and gradations! So there are ways where I feel I’m definitely becoming more autistic as I get older eg wearing the same kind of clothes (although this may also be to do with other physical conditions), needing more routines, being less adventurous etc. 

These things all interact too making it hard to know what is simply age, what is to with these other coexisting conditions and what autism. I also have FM and ME/CFS among other things so how do you disentangle age from all these other variables? 

I did share my thoughts on social media in relation to this and many people related much more to the second part of the post ie they definitely felt unmasking was making them become more authenticly autistic with age. 

However, in discussion with people I realise that maybe the first part is within limits and because I'm in far fewer social situations now. I only have to 'mask' or 'say the right things' in small doses now. If I had to spend hours among different people socially as at school or work the exhaustion would soon set in. Maybe unmasking is exactly that - knowing your limitations and how much time you're willing to spend with others and asserting your right for alone time. For me, I've been gradually doing this since mid-life way before my diagnosis.

How about you anyway? I'm particularly interested in hearing from other older and late diagnosed women. 

Authism - autism and ADHD: opposites or two sides of the same coin?

I’ve been putting off this one about ADHD and autism as it's such a massive area. But the  two 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.

Many thanks 

Authism - holidays stress & anxiety in autistics

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.

Authism - some expressions what I have a block with!

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?