Learning to read (again)

Learning to read (again)

Years ago, when I explained to a friend that written words would vibrate and float around she told me that it was a common dyslexic issue. I was surprised as I’d been a fluent reader long before I started school, tested as having a reading age of 13 when I was 7, and was a voracious reader throughout my teens, often reading a book each night until doing an English Literature A level made me lose my love of books for a while. Writing was also easy. I looked into it. I’m not dyslexic.

However…

I have always described my reading style as staring at a passage, catching the words like fish into a net, and then hoping my brain would process them and rearrange them into the right order. In some ways this is not as bad as it sounds. I can skim read a passage of writing fast and pick out the relevant information. This was great when I was at school and hadn’t read something for homework. I could easily skim a few pages and get the gist while everyone else was still getting their books out.

I was also a pretty good sight-reader which got me out of no end of trouble in instrumental lessons and orchestra rehearsals when I’d rarely done the required practice to learn the music beforehand. I could scan a passage of music while playing it and translate the notes, phrasing and chords etc to my fingers very easily. Considering playing and teaching viola and piano was my livelihood throughout my twenties this was a super useful skill!

So why was this a problem?

Headaches. Headaches from trying to slow down and read stuff properly. Headaches from trying to understand sentences that I’d made some sort of anagram with and come up with a new meaning for. Headaches from realising I’d missed some of the poetry and musicality of a phrase and having to read over again. Headaches from those words vibrating and jumping and disappearing altogether. Tricky little buggers.

But a few days ago, in reply to one of my tweets, somebody recommended coloured overlays. I bought a packet of wide bookmarks (designed for dyslexics) in a range of colours and, one at a time, put them over the book I was reading. Yellow, meh. Green, Meh. Purple, pfft. Pale blue…

Wait…   What?

The.   Words.   Stayed.   Still.

I could see every word. Each letter had a clean, clear edge. I could see the words one at a time and in the right order.

Mind.   Utterly.   Blown.

I’ve been reading for 43 years (I’m 46) and feel like I’m just learning how to do it properly!

It’s got its own quirks. I’m going to have to practice reading every word in the order it was meant to be read in. It’s strange. And to be honest, it feels a bit ploddy, a bit pedestrian. Less adrenaline fueled. But on the plus side, a deeper, more sensory experience. I keep reminding myself to slow down and appreciate the journey. To focus on the story. Or the journal article. Or the instructions.

I think it would be worth me looking into a bit more. Apparently it has something to do with visual tracking challenges, which could just be part of my being autistic, or might be to do with dyspraxia (which I think I fit the criteria for but haven’t yet sought a diagnosis for). But in the meantime it’s going to mean practising. Some bigger overlays could be useful. Maybe some computer software. But mostly practice. Lots and lots of reading. Yippee!

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Recalibrating (a grumpy post)

Recalibrating (a grumpy post)

“Insistence on sameness, inflexible adherence to routines, or ritualised patterns or verbal non-verbal behaviour (e.g. extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).” from the DSM-5 criteria for Autism Spectrum Disorder

So here’s a thing that I think not many people understand about the majority of autistic people (not all – we autistic folk are as individual as anyone else) and that’s how change can affect us.

Most people now recognise that new routines, changes of pace and transitioning from one activity to the next is difficult for autistic children but they might not realise that it’s the same for autistic adults. Because autistic adults often seem to deal just fine. No public meltdown no problem right? Well, um.. not-so-much!

I’ll give you an example:

Ok, so how about if you, one of my dearest friends, pops round because you were in the neighbourhood. Here’s what will happen. I will jump up and down, hug you (I am a hug freak) and run around wittering and making a pot of coffee because I am truly happy to see you. OK, my reaction might seem a little over-the-top but as you are my dear friend you will already know that I am pretty childlike when I get excited. You are entirely forgiven for thinking that this is the best thing that has happened to me this week and that I can manage this situation.

But here’s the thing. My adrenaline levels will rocket the second I see you walk up the garden path (hence the performing-monkey-on-speed routine), my head will be pounding and I will be worrying because I haven’t had time to script (plan) any conversations (this is totally a thing), clean the house (I have a major fear of being judged) or re-plan my day.

And then, once you leave I will be distraught because I didn’t get to enjoy it properly – sure I smiled and laughed the whole time but the adrenaline will have stopped me relaxing and truly enjoying your visit. And I will have missed the chance to tell you funny and interesting things, to ask you about stuff I know interests you, and to entertain you as you deserve to be entertained –  because I didn’t get time to script. The sheer frustration is overwhelming.

And then, after the disappointment of not being able to be spontaneous (for goodness sakes, you only popped round for a cup of coffee!) s**t really kicks in for the rest of the day. Without the plan and the routine I was expecting for the day I’ve used up brain processing memory that I need for other stuff. When one thing changes my brain can’t neatly compartmentalise it and get on with the next thing. My brain decides that everything is up for change:

  • I will struggle to figure out the time and the day all day
  • I will mis-plan the next family meal so that it will be late and I will forget to cook part of it completely
  • I will walk into my own walls, trip up or fall down the stairs because the layout of the house feels different (strange but true)
  • I will do odd things like put my phone in the washing machine (this happened last month and I am still struggling with the loss of my iPhone because I can’t afford to replace my 5SE model and am instead using an old one with a tiny memory and a tendency to drain power unexpectedly – oh the irony)
  • everything will feel a bit louder and brighter than usual and it will give me a headache

…and as easy as that, I will lose the rest of the day to a brain that’s been shaken up and tipped out, like a basket of wool that will need untangling before it’s all packed away again. To make it worse, the emergency conversational processing I will have had to do will mean that I will have trouble conversing even with my family for the rest of the day. All for the sake of a dear friend visiting unexpectedly!

What’s more, it’s not just unexpected visitors that sets me up in a flurry of confusion and exhaustion. Changes of routine, changes of venue, new places, unexpected faces, cancelled plans? All of these mess up my precariously balanced equilibrium. And it can take days to recalibrate.

And so, while it seems that I am being unreasonable in not being able to change plans at the last minute; or when I have to back out of a social engagement altogether because other people have been invited this is why. I love that you can be spontaneous, I truly admire that in you. But I can’t join you in your spontaneity. Not without a bit of planning.

I promise a non-grumpy post next time!

Not boredom

Not boredom

This afternoon is one of those afternoons. A cacophony of the oven, washing machine, lawnmowers, birds, someone’s TV, dogs barking, planes overhead, neighbours talking, shouting, swearing, belching hurt my ears but my headphones feel too hot and tight. The light is both too bright and too dim; if I try to read a book then the words jump around; if I close my eyes geometric patterns swirl menacingly across my eyelids. Even writing this is tricky – every word looks like it should have a red wriggly line underneath it. My joints feel cold and greasy. My skin hot and gritty. I am hungry, nauseous and full all at once. My head feels stuck on at the wrong angle and no amount of clicking my neck and shoulders can put it back on right. I can’t settle to anything. Everything seems unsurmountable, urgent and worthless. I am tired. I am restless.

I don’t know what this is and why this happens.

When I was little I was told that this feeling was boredom and that “only boring people get bored.” I didn’t understand why feeling this way made me a boring person but accepted that it was a major failing on my part.

At school and university these days could be torture. Teachers at the front of the class swung in and out of visual and audio focus. Words on the blackboard and page vibrated and floated away. My wrists resisted writing.

I guess that at least I get to look at it objectively as an adult. This day will pass. Maybe tomorrow I will know what it is that I want to eat, read, wear and do. Perhaps my bones will feel like they are in the right place, and my skin will fit. Hopefully sounds will make sense and I will be able to process the contrast in shapes, shades and hues. For now I will drink plenty of water, walk barefoot in the garden and appreciate that my husband and daughters understand that today I can’t make words come out right and that I am doing the best I can.

It’s definitely not boredom. Does anyone have a word or an explanation for it?

 

Educating Flojo

Educating Flojo

My undergraduate BA in music in the early 90s was a bit of a wash out. Learning life skills and social skills took precedence as I attempted to learn the rudiments of house sharing, balancing a post-rent-payment budget of £7 a week, and basic self-care skills such as cooking, using the launderette and not burning the house down (that’s a whole other story or two).

I worked hard in orchestral and chamber rehearsals but lacked the motivation to practice my own solo music; turned up to lectures but couldn’t focus on a word I was told; coordinated a record breaking rag-week, fought for institutional ethnic inclusivity and threw myself into voluntary work assisting on art, music and drama workshops for disabled people in connection with the City of London Sinfonia – but didn’t ever figure out how to use the library, references or a computer.

There were no grey areas in my grades. I either aced courses or failed them. Autistic burnout caused me to leave town for a few weeks while I decided whether or not to continue with my studies; and a breakdown in communication meant I ended up short of credits and had to return for a fourth year while forfeiting my honours. I repeatedly confused, irritated, offended, and upset friends, housemates and lecturers while battling chronic anxiety, depressive episodes and executive dysfunction. My essays, handed in late and illegibly handwritten, were a mess. My room was a mess. I looked a mess. Hell, I was a mess.

But, this return to academia twenty five years later, thanks to a place offered on a research masters (without the necessary prerequisites of a 2:1 in a relevant honours degree but taking into account extenuating circumstances and gained experience) has offered a whole new outlook, increased confidence and widening of comfort boundaries. And why? Because of people’s unquestioning generosity but also my own new understandings since my autism diagnosis in 2016.

My husband patiently demonstrated how to use the automated system to take library books out and also how to return them. Twice. I still don’t use automated check-outs at supermarkets but glow with pride when I check a book out.

A classmate showed me how to log onto the university computers, send articles to print and then log in again and print them off in the designated print rooms. Magic!

Another showed me how to format assignments and automate references within a document.

Another showed me how to buy my bus tickets from my phone; proof-read my first assignments and explained how to use more authoritative language. He also recognised the signs of me going into meltdown from sensory overload during a lecture, swiftly got me out of the lecture room to recover and then later collected my books and drove me back to Bristol rather than me having to navigate crowds and public transport.

It takes a village…

Yet another classmate rescued an assignment that my laptop dramatically lost just days before the deadline.

The IT folk cheerfully sort out my laptop, WiFi, passwords and software for me on a regular basis.

My course leader helped me to find my way around campus and checked that I could access quiet places without me ever having to ask or explain that I needed that support. Most days someone has to help me open a door (apparently most of them are automatic. Maybe they just don’t recognise me).

On two separate occasions strangers recognised impending meltdowns, calmly led me to quiet, outdoor spaces and patiently waited until I was ready to rejoin other people. (Once was in reaction to a fire alarm – it wasn’t fear of fire that made me cry and shake, it was the change of pace, the noise, the confusion.)

All this support may sound trivial but it has all been profoundly helpful. Until I knew I was autistic I didn’t know that it was ok to ask for or accept help for these things. Autistic people are recognised as having a spiky profile. My spiky profile comes with difficulties adapting to new environments and situations; overwhelm at noises, lights, smells, people and unexpected changes. It also comes with a high IQ, an ability to see patterns and links across disciplines such as health, philosophy, art and science; and skills in effectively disseminating information to a range of audiences.

I’d not considered blogging all this until I messaged a shortened version to a super intelligent and accomplished autistic friend this morning and she replied: All that stuff? I know how hard it is. I have tears. I sometimes forget how much the experiences I thought were embarrassingly pathetic are familiar to my autistic sisters.

Accepting generous offers of help in my areas of challenge have meant that I’m succeeding this time around. I have learned more in the last six months of study than I did in four years in my twenties. I start my assignments in good time, plan them, give myself time for multiple drafts and submit them hours, if not days before the deadlines. So far all my assignments have been marked at merit or distinction level. Time will tell if I can keep this pace up. I need a bit of help from you too – please keep your fingers crossed for me!

Walking in a straight line

Walking in a straight line

I’m not sure how its nearly eight months since I last posted. I started a Masters in Research in September and had to learn a whole new way of writing; everything meticulously referenced and using fancy words ending in “ology” like ontology, epistemology and qualitative methodologies. Turns out I’m actually pretty good at it but it is hard to swap back and forth between that and blogging which reflects my natural verbal speech patterns and tendency to make up words.

But I wanted to get down in writing a thing that happened and the effect it had on me. And I wanted to write in my usual way. With plenty of alliteration and creative phrasing. And a distinct lack of either Harvard referencing or correct punctuation.

Last month I fell over.

My overdramatic tip, skip n flip didn’t result from any kind of extreme sport; from a slip on ice or trip over an large obstacle. I was just walking along a busy pavement (happily pondering a health and wellbeing workshop I’d just given to some exhausted looking trainee teachers) when I did some kind of slow motion stumble, stagger and swoop towards the ground; spraining my ankle, creating large and bloody holes in my knee and elbow, jarring my wrist and shoulder and still managing to end up on my back with my feet in the air in the process.

So graceful.

I posted about this on Instagram and many of the (sympathetic) comments and DMs that came back included “that’s so you”, “you haven’t changed”, “only you!” And its true. People who have known me over the years have been there for me when I’ve been hit by cars (five times, luckily no serious incidents), knocked myself unconscious walking into walls; fallen off pavements and tripped over my own feet.

And why? Because I forgot to concentrate on walking in a straight line. Maybe I let my mind wander or something caught my eye; perhaps I misjudged a distance or the speed of an oncoming car. Probably I was listening to someone talk and that took away from the focus I needed to pick one foot up and put it in front of the other.

I’ve been told often that I have a characteristically determined walk and it has taken until recently to realise why. I am consciously reminding myself how to walk most of the time I am walking. Straight back, look ahead, swing my legs from the hips, keep it fluid, feet up… no not that much, look ahead, don’t swerve into that person… stick to the left left! Smile! FEET UP dammit they said hello, smile, say hello, straight back breathe…. it’s ok you can stop smiling now they’ve gone past, swing my legs from the hips, feet up, back straight…

If I’m walking or even running somewhere quiet, along paths that I know well, where there are no people and their sodding “it’s ok, he just wants to say hello” dogs then I’m fine. I can go all zen-like; or even go into a slow-mo Matrix mindset style, avoiding holes or rocks with ease and walking in a perfectly straight line. Or if I’m chatting with someone who knows to grab my arm every so often when I stumble and wait for me to recalibrate which way is up; that’s ok too. More than ok in fact. It feels really good to walk like this. Like I’ve activated some kinda cool superpower. Look at Flo, walking without constant instruction – how does even she do that?!

But I am wondering if other people get this too. If there are others using up valuable cognitive energy talking to themselves like they would to a child riding a bike for the first time. I’m not suggesting I’d be learning multiple foreign languages, composing symphonies or pondering complex equations (or indeed any equations) but I wonder what it might be like not to have to maintain that constant stream of instructions getting safely from A to B. What might that feel like?

p.s. the featured photo is not me. It’s a stock photo. But that’s kinda how it all went down…

 

Heatwaves, Hornets and Horses

Heatwaves, Hornets and Horses

I may have forgotten, but I don’t recall there being what Simon and I catchily refer to as one-of-those-weird-days when we lived in any of our other houses: from cities, to towns to just the other side of our village. Days when everything around us starts to feel a little frantic and out of control.

Either my memory has blanked it out or it is a phenomenon limited to the tiny ’60s council estate which we moved to ten years ago.

On one-of-these-weird-days there is a strange air. More shouting than usual, more fires lit to fill the air with black clouds of noxious smoke, more public drunkenness, more sirens announcing the emergency services driving onto the estate. It doesn’t fit with moon cycles, days of the week or the weather. I can see no pattern.

With the exception that heatwaves can trigger more of those days with not just the locals but the wildlife itself joining in. We had one of these recently, a couple of weeks into this long spell of oppressive heat that much of the UK is hoping will break soon.

A large hornet took up residence in my living room and refused to leave through the wide open windows. It bounced around hitting walls and windows, steadfastly resisting efforts to coax it back outside. After a time the loud, lazy droning became quite soporific.

Eventually it found its own route to freedom and nobody was hurt.

A neighbour kicked off inside their own home, screaming, shouting, destroying. It’s a regular occurrence and is already being monitored. We closed the windows and the curtains to the noise but on this occasion other neighbours poured out of their houses to witness.

We waited for the people to clear and the melting tarmac to cool so that we could walk the dog and we climbed over the stile just in time to see 6 horses stampede from their field, manes and tails flowing as they thundered along the footpath and onto the public green towards the A road.

We warned a man to keep his young children away from the horses and with that they all ran out of the kid’s gated enclosure and towards the horses yelling excitedly.

We called the police. Luckily the horses headed back and nobody was hurt.

And, by the evening, with stuffy nighttime temperatures requiring windows to be pushed as wide open as they can go, opposing sound systems kicked in, bass notes ricocheting around the backs of houses until they collided. Children shrieked in their gardens long after bedtime. Adults hollered conversations out of their windows across the street. Dogs added their staccato voices to the general cacophony.

And the next day, despite the heat still holding steady at 30C, all was quiet.

Mozart, Wine and Pizza

Mozart, Wine and Pizza

I figured it’s time I told you all another daft story. I have many. This one is a tad farcical and explains why I was teetotal for two whole years in my early twenties…

In the early 90s, while I was a music student, I busked with a string quintet in my summer holidays. Four highly talented and fairly laid back blokes and me, an anxious undiagnosed autistic woman with hennaed hair, nose ring and questionable dress sense (70’s waistcoat, striped PJ bottoms and ex-military boots anyone?)

We played the classics such as Mozart’s Eine Kleine Natchtmusik, Ravel’s Bolero,  Vivaldi’s Seasons, Pachelbel’s Canon and Hendrix’s Purple Haze (yes, really) in Bath outside the Pump Rooms or the Abbey to crowds ranging from 1 – 200. Some days dodging the raindrops and desperately hoping to make enough money to cover the bus back in the next day; others counting out up to £70 each in loose change after a few hours.

One Saturday though we’d been asked to play for a charity function at Longleat house. If we wanted to turn up and play lovely, cultured music in the formal gardens for the afternoon we’d get food, drink, any takings from busking and a lift home after the disco. No holes in that plan right?

We busked in Bath as usual for the morning as it was a gloriously warm and sunny Saturday – the takings were good. We celebrated with cider and headed for Longleat.

Over the next few hours we were plied with wine. Much wine. It was hot, we were thirsty.

The busking of fine classics happened. Food did not happen. More wine happened. Those are the main things that I remember.

Other things I remember include:

  • going to the disco and asking the 7th Marquess of Bath if he would like to dance (he declined, dodgy leg apparently – maybe from servicing his many, many wifelets)
  • getting very lost in the maze, which in case you are wondering is the longest maze in the world, and having to crawl my way out. I use the word crawl literally here. There was a little staggering but I kept crashing into the hedges so crawling made more sense
  • falling asleep on some grass using a pizza box as a pillow (I can only hope that somebody had already eaten the pizza)
  • the rest of the quintet waking me up to tell me that the driver had refused to drive us home because he was also drunk but that he would take us home in the morning. The morning?! Our bass player asked for beds, pillows and courtesy – except with several well placed expletives inserted in that sentence. The driver responded by punching him in the face. Nice.
  • being bundled into one of two taxis that would cost us our entire day’s earnings to get just half way back to Bristol. Then being bundled into a car that would take us to the bass player’s parents house where we were kindly all given beds, pillows and courtesy.
  • being violently ill and having to pretend I was ok. Because parents.
  • getting to my parents home and spending the next three days in bed with what I can only assume was alcohol poisoning. It was bad.
  • discovering a “please keep off the grass” sign in my bag. Apparently the others smuggled it in my bag while I was asleep. It was a lovely sign, I kept it for years.

Some other daft stories:

Guinness Punch and an Altercation with a Bus Driver

Lost in Paris

Face Hugger