Authism - Autism Burnout and Agoraphobia

Having suffered sometimes with agoraphobia since young adulthood it never occurred to me, until I learned about autism burnout, just how striking the similarities are.

Most people think of agoraphobics as being housebound because of the fear of panic attacks and a whole array of symptoms. But the fear of going out from the saety of home is usually the end result to avoid the unpleasant symptoms.

Agoraphobia comes from Greek and literally means fear of the assembly or market place. It was coined by Karl Friedrich Otto Westphal in 1871 when he observed three male patients 'displayed extreme anxiety and feelings of dread when they had to enter certain public areas of the city'. There are many other ‘fight or flight’ symptoms associated with agoraphobia such as dizziness, fear of collapse, not being to breathe, palpitations, jelly legs, sweating and overwhelming need to escape urgently to avert something terrible happening.

It’s not hard to see that crowded markets and market places are hotbeds of sensory overload The modern day equivalent of the outdoor market - the supermarket - is ramped up with bright articial lights, flurouescent signs with numbers and bargains assaulting our senses at every aisle and checkout. Is it any wonder supermarkets are an agoraphobic's nightmare? Same with busy roads and public transport - all that noise, all those people, all that movement. Is this why autistics often suffer with agoraphobia? The reactions to sensory overload are so similar. If you think about sensory overload and being unable to process it, your brain, nervous system and body are going to do strange things under such stress. You're possibly going to go into fight or flight mode. Not everyone responds to sensory overload like this. Neurotypicals have different or better filters and can more successfully screen out the flood of information. 

It also makes sense why familiar places and routes feel safer for agoraphobics because you learn to ignore a lot of the extra sensory information that is coming at you from all angles when you're in a new place. My sister and I have often arrived in a new place like a holiday destination that's supposed to be relaxing but after any journey and particularly a long one, we've found it hard to get our bearings. We've felt dizzy and light headed and needed to hold each other for support and it takes a day or two to recover.

In the nineties, there was a place in Chester doing research into something called Organic Brain Dysfunction which was said to be associated with, if not the cause of agoraphobia. My sister and I saw one of the practioners who was operating on the south coast. Many of the questions he asked were very similar to those also asked prior to an autism assessment. Questions related to clumsiness and bumping into things (dyspraxia) and balance, P.E. and riding bikes. Anyone who's ever suffered with agoraphobia will know that balance problems and fear of collapse are central to the condition. The researchers were working on the premise that it was a primitive reaction as seen in babies that had carried into adulthood. My sister and I have always maintained that it's a physical condition (which like any such condition can be worsened by stress) so it was good to see this research was focussing on physical causes and weakness in the body.

So it makes sense that under stress, trying to walk around a supermarket or by a busy bypass when there are other stresses like flashing lights and loud noises your body isn't going to respond well. You may feel dizzy and walk as if you've been drinking. 

I rarely frequent supermarkets now but whenever I had to negotiate them, I instinctively felt better wearing sunglasses (reduces stimulation) and pushing a trolley (something to hold onto and so less likely to fall). Busy carpets and wallpaper can have the same effect. Most agoraphobics say they feel better walking out at night than in the day, again because of the reduced stimulation. 

Queues have also been a trigger for my own symptoms of agoraphobia eg queues where there is no escape. In a queue, it is the standing still and having time to think about falling or collapsing and becoming aware of my unsteadiness, symptoms etc which is worse than if I keep moving. If calm, I am better able to cope with supermarkets, queueing etc (I do little queueing now because of other conditions).But it is often after prolonged periods of stress that agoraphobia kicks in. Then it is maintained by avoidance. Prolonged tightened muscles also give that feeling of dizziness and incorrect breathing.

Many people mistake agoraphobia for fear of open spaces and while people can feel both, there are differences. This is why being in the open countryside or on an empty beach may be calming to the same person who is fearful in the busy dizzy city. Having said that, my sister reminded me that you can feel this way even in the country if eg there's nothing to hold onto. I've also felt this on a beach if there's no shade. But often if you're on your own you can escape. It's a feeling  of being trapped with other people that can bring on panic attacks.

On the other hand being in a wide open art gallery with eg shiny white floors and walls may trigger the need to escape but this is more likely to be unnatural sensory stimulation with no natural landmarks, causing the brain to react. I found this interesting article on Kenophobia which you can read more about here:

Fear of Voids or Empty Spaces Phobia - Kenophobia | FEAROF

And more on sensory overload by following the link below:

https://www.bristolautismsupport.org/sensory-overload/

Bringing it back to writing I have mentioned agoraphobia in The Other Side Of Carrie Cornish who I think is autistic, as I wrote on a previous blog. She mentioned her agoraphobia several times in the book.

Well, I hope that has provided food for thought and if you're an autistic person who is suffering it has suffered with agoraphobia I'd love to hear from you.

Authism - exploring the probable autism of Carrie Cornish (fictional character)

Today I want to do a blog about another of my books with an autistic character. This is the book, The Other Side of Carrie Cornish who is having to deal with neighbour noise while her own mental health is suffering and the physical health of her partner. This is the main thrust of the story.

There's no doubt in my mind now that Carrie is autistic but when I began writing it in the noughties I had no idea. But this books is semi autobiographical. I couldn't finish it at the time as it was too close to my own experiences so rewrote it some years later.

But you'll find no mention of autism in the book at all. Carrie does however mention her anxiety, her panic attacks, her social anxiety and agoraphobia. She withdraws into her fantasy world with her alter-ego—Seroxat Sid. We also see that she suffers with noise and light sensitive and other sensory overload and trichotillomania (hair-pulling) though she doesn't refer it by name. She refers to trichotillomania or trich as a guilty secret. I didn't know for years that this is what's known as a 'stim' (or self-stimulation) nor that it's a very common stress-buster in autistics.

In the video here I also read a small passage from the book about this. Apologies for the suboptimal quality of the vid in my places and it got cut off rather abruptly but I hope you'll stick with it!

 

The news also significant to Carrie and partner Sandy (there's also a reference to this in the book excerpt). They particularly follow the welfare reform changes in news which impact on them, as was happening around 2012.

I shall be returning to this book as I feel there's a lot relevant to anyone with personal experience of autism eg more about sensory overload and meltdowns.

As always your comments and feedback most welcome.

Authism - Manifesto On Never Growing Up!

I've just finished reading the autobiography of Bernadine Evaristo 'Manifesto On Never Giving Up' and I kept reading it as 'Manifesto On Never Growing Up' which would be a good title for autistics!

I've seen many comments about autistic people looking a lot younger than their years.  Why do you think that is? Do you think it's because we never lose touch with our child selves or because we have a youthful approach to life and get lost in our special interests? That we avoid certain life events if possible that would age us? Or do you think it's the same neurological wiring that determines our autism and also how we age? Possibly there's a bit of truth in all of these hypotheses. I know that we are delayed in some areas as children and perhaps we're always playing catch up. As a teenager I was always thought to be older but that's because I was trying to get in pubs and clubs! But once I reached my late twenties everyone thought I was younger and still do. It's the same for my sister and we're both in our sixties now.

Mind you, I was saying to my sister recently how people don't fall through the floor now when they know our age. That's either because I look my age now or perhaps people don't think sixty-something is any big deal. I'm hoping it's the latter! 

Anyway I thought I would Google this subject after I'd jotted some notes and came across some interesting thoughts on Quora. So am posting the links below:

https://www.quora.com/Ive-read-that-people-who-have-Aspergers-tend-to-look-younger-than-their-years-Does-it-make-any-sense

https://www.quora.com/Why-do-people-with-autism-look-much-younger-than-their-age

The Quora links made an interesting read and some suggestions centred around the fact that we use fewer facial muscles. This definitely isn't true of me as I mimicked and reflected people a lot as a child and young person. It wasn't until middle-age that I started disagreeing or not having to mimic. Other suggestions are that because autistic people spend longer time alone then they'll be using fewer facial muscles. This makes sense. Others suggested the higher proportion of people with Hypermobility Syndrome amongst Autistics where the elasticity of the skin would lead to slower ageing. There was also mention of social constructs and the way we don't do those.

Anyway, as always, I would love to hear your views. We please do leave a comment below.

Authism: twins books - books about twins.

Today I wanted to talk about twin books. Or should I say twins books - that is, books about twins. 

                                                            

I started writing my very first book at the end of 1978 which had a different title back then but it wasn't until the early 90s, when I completely rewrote it, that the twins idea became part of the plot. I retitled it - Did You Whisper Back? 

The story opens with a crisis in Amanda's life: she thinks she had and lost a twin and goes on a quest from Merseyside down to Devon to find her, but this lost twin Jo is seemingly a figment of Amanda's imagination arising from distorted childhood truths. However Jo becomes more and more real as Amanda suffers a mental breakdown. I won't say any more about the plot but I won a southern arts bursary for this book in 1991 and had an agent interested although he couldn't place it. It wasn't until twenty years later that I self-published it. 

Last year, I was in a 'women and autism' group as a newly diagnosed women with autism. I wasn't expecting to come across many authors as at that point I didn't realise how many of us there are! But I had posted a thread about something writing-related and a woman joined the thread who was also a published author. We got talking about our books and we'd both written books about twins! This author, Rosalie Warren, went off to read my twins book. I had already earmarked hers but knew it would take me several months to get round to buying and reading as I'm such a slow reader. Anyway I was given her book 'Coping With Chloe' for Christmas and have recently finished it. It was a wonderful read. I read it quite quickly for me as it's a short book (definitely my sort of book!) and written in an assured appealing style. It is, in fact, described as a children's or young person's book although I feel it has crossover appeal and is suitable for all ages, whereas my protagonist is older and more suited to the adult reader.

My book is about Amanda's fixation and search for a missing imaginary twin Jo. Rosalie's book is about Anna's dead twin Chloe taking up real space in her head and causing problems for Anna, the surviving twin. Both books are about lost twins, real or imagined. I can't say any more than that without giving away any spoilers but they probably have more in common than suggested here. But  I found it a fascinating that as autistic authors of around the same age and gender, Rosalie and I have both written psychological books about twins. 

I have changed my cover several times and it will be changed again but for the last two covers I've kept the image of the photograph divided into two sides - one in colour and one in black and white. I did several mockups with various photos before picking that final one (although I may return to some of the older ones when I redo the cover). As you will see, Rosalie's cover also has a similar theme! 

Both books are available on Amazon as an ebook and in paperback.

Did You Whisper back is available at:

https://amzn.eu/d/geroJhX

Coping With Chloe is available at:

https://amzn.eu/d/11H4n44

 I have also posted a video similar to this on YouTube which can be found below:

https://youtu.be/1Y0D8sWA7po

Many thanks for reading today and as always I'd love to read any of your comments.

Autism, heightened sensitivity and the arts.

Today I wanted to talk about sensitivity in autism. Some say we are over-sensitive or have heightened sensitivity but it's my view that noticing or remembering some slight or hurtful comment, feeling mental or physical pain, and being creative all come from the same place. That same sensitivity we have to how other people feel about our art or our writing or our music is the same sensitivity which drives us to create in the first place. 

I was talking with someone recently in an autism forum. She was an artist but it's the same for all the creative arts. All artists in the widest sense of the word are very sensitive - they need to be, damn it! - to do their art: to observe the way the light shines on that tree, to delve deep into their feelings and emotions and to record it, to remember a conversation word for word from years ago, to write a song, a story or a poem...

It's difficult to view hyper-sensitivity as something positive. It doesn't feel very positive being too sensitive to light and noise and other senses. To feel sensory overload until you need to shutdown or meltdown or nurse your migraine. Or take painkillers for your fibromyalgia. Gaviscon for your stomach.

Being an over-sensitive person generally can cause mental pain, torment and anguish in all areas of life. But the artist tries to turn all this into a positive. Some of you will have heard of something called Rejection Sensitive Dysphoria which often co-exists with autism. This means that we may fear putting our work out there. We may take it even more to heart if it's rejected or negatively reviewed. I've had so many rejections in life but my urge to create has always been stronger. I don't know if I've developed a thicker skin or if I'm actually any less sensitive to eg rejection letters from publishers or to negative reviews. But I am better at soldiering on. If you've bounced back before you know you can do it again. I guess I'm lucky to have had positives and acceptances too. These can certainly tide you over if you remember to look at the half-full glass. My small successes along the way might not be what others call success but there's no better feeling than having a publisher say yes or having feedback from a reader who loved your book, your story, your characters. I've learned that the way I write and the things I write about aren't everyone's cup of tea. I think they're quite Marmite actually but that's OK. I don't like all books either. They may be top notch but just not my kind of thing.

 I will return to the sensory aspect at a later date.

Well, that's all for now but please do leave your thoughts in the comments. This has been slightly modified from the earlier video embedded above.

Thank you and wishing you all a very happy Easter 🐤😊

Global Autism Awareness Week and the launch of a new Facebook group

It's autism awareness week this week (March 27th - April 2nd 2023) and a coincidence (or is it?!) for the launching of a new Facebook group for autisic book lovers (writers and readers). It's an idea I've had for some time as there are many autistics who have books as their special interest. I've already done some blogs on my own experience of the writing and reading process. Do we approach the writing and reading of books differently?  I didn't even know until recently that the creative arts was such a flourishing thing with us! I had imagination so I couldn't be autistic, could I?

 

https://youtu.be/RFb0xfTs72M

I'm an author and also a reader, but I'm only able to read about a dozen books a year for reasons I've outlined in earlier blogs, and slow processing means I always have a backlog of reads. Sadly even more at the moment because of sore eyes and eye strain. So writing is my priority and first passion! I know there are others where reading is their first passion. I know there are many indie authors (some of whom will be autistic) who are longing to reach more readers and would be happy to do some giveaways or provide reviews copies in exchange for a bit of love for their books and a few more reviews and shares. I know too there are many autistics whose special interest is escaping into books, who can't get enough of the written word. So why not have a group where we can marry these two together? 

So this is the subject of my blog today - the launch of the new Facebook group. I will put the link in the written blog. 'The group is called Autistic Authors and Readers - books are our special interest.' (link below) I have spread the word mainly in one women and autism group, who kindly let me do so. So we have a shortage of men at the moment. Also would be lovely to have some younger people and people of colour. But all autistic book lovers -and those with ADHD I should add - are very welcome if they're happy to keep to the spirit of the group which is to connect and engage with our shared love of books. Hopefully some readers will discover some new authors and books from people like them. 

https://www.facebook.com/groups/243261171372852/permalink/243261191372850/

Topics may change and evolve but at the moment the aim is to connect and engage with our shared love of books. Authors may wish to discuss about the writing process, their success or otherwise (!), their books and characters; readers may wish to chat about what sort of books they love. 

Authors may post their books, blogs, websites and book promos in the comments section, preferably no more than one a week but no rules set in stone yet.  Just the usual: to be kind and civil, no spam, give as much as you take, no racism, sexism, homophobia, ableism and no flashing GIFS. Hope to see you there!

Thank you! 😊 

Noise or change to routine - an autistic's nightmare dilemma

This week has been a bit fraught in anticipation of next week when we’re expecting building works next door. We autistics hate disruptions to our routines but sensory overload is another one of those things which bothers us greatly. I think it bothers most people but many autistic people just can’t switch off. Just as many of us love certain songs music, we can have extreme reaction to other sounds (and indeed other senses). Chris Packham addressed this in his recent programmes 'Inside The Autistic Mind'. He mentioned the apparent contradiction of sensory avoidance and sensory seeking eg loving certain music or sounds of nature etc.

But I'm mainly talking about sensory avoidance today. So for me, I'm hugely distressed by unexpected noise like scaffolders, impact noise - footsteps above me or sudden bangs from the floor above me or next door. It makes living with neighbours distressing and having to rely on their goodwill. If soundproofing isn't ideal that only adds to the distress. I will talk about this more in a later blog in relation to my one of my books but I don't have the spoons at the moment to put it together at the moment.

Last time during lockdown we had the balcony above us done and the hammering and crashing pounded and resounded through our small abode and we couldn’t escape during lockdown. I had a migraine on one day and ended up shouting at the builders. Our housing association hadn’t given us any warning either. So this time and armed with a diagnoses I have taken the bull by the horns and we’ve decided to escape. Autistics like to know exactly what will happen and when but the weather might be bad and so the builders might delay and that’s all another grist to our anxiety mill. 

Other things that I've always hated and had no idea they were related to autism (in me), is phones suddenly ringing. When I was a child and teenager they didn't go to answerphone either. You will see a picture of the kind of phone we had in the 1960s in my video although I didn’t have to deal with the phone as a child. One such phone features in my novel ‘Did You Whisper Back?' which I’ll discuss more another time. 

Later we had a plastic 1970s phone and it would just ring and ring until someone answered the bugger, or until it finally rang off! I always feared if it was someone for me. I didn’t realise but other autistics have said that they feel better when they do the phoning. I’ve always said this too, as I’m more in control, although I hated ever having to do this in front of other people eg at work. Then there’s the doorbell. That sudden urgent noise through the house, especially when it’s unexpected.

There's also visual sensory overload. I hate flashing lights and don't even start me on GIFS! They can trigger all sorts of reactions and conditions in the neurological sensitive eg migraines and are a factor in other conditions such as agoraphobia, more about which another time.

So, not much about writing today. Just to say my special interests get disrupted with any upheaval. I can’t carry on with chaos or interrupted routines. I have had to choose between disruption to routine or noise for several days. Not a great choice!

As ever, I’d love to hear your own thoughts. So please do leave a comment here or on my video which I’ll be uploading to the usual places.