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)

“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

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

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

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…

 

Autism Awareness

#AutismAwarenessMonth – a.k.a April – is a tricky one for many autistic people as commercial autism charities bombard social media with publicity stunts to raise awareness of autism prevention-and-cure research fundraising opportunities. Sadly this publicity is very rarely generated by autistic people themselves, but by parents who fear autism itself, and by profit led autism charities with interests that lie in research and autism training that rarely benefits and in fact often harms autistic people.

Somehow I missed all of this hype until two years ago.

And then my life took an unexpected turn.

During Autism Awareness Month 2016 a Standard Issue article by the fantastic Sarah Hendrickx ended up in my twitter feed. And it was about being an autistic woman.

I read it through several times. What Sarah had written resonated strongly with me. Which was odd because I wasn’t autistic. Her experiences were normal weren’t they? Same for everyone? No?

I did a bit of googling. Did a few online tests. Googled some more. Hmmm….

My parents kindly offered to pay for me to get a private assessment and within three weeks I had a diagnosis. I was autistic too!

And then everything got a little bit crazy. A diagnosis at 43 means replacing the filter through which you have interpreted your entire life thus far. It means going deep. It means sifting through every memory you have of situations or conversations that didn’t make sense, of relationships that didn’t work, of having to behave in a way that was entirely confusing to you, of breakdowns, meltdowns and shutdowns; of the accusations of being stupid, lazy, uncaring or being over-dramatic; of trying to fit in and failing; of being tired all the damn time, of having your meltdowns used against you, of being laughed at and talked about for saying or doing things that you didn’t know were “wrong,” of not understanding people, having your natural stims laughed at, of being blamed for not-reaching-your-potential and of wondering why *everyone* seemed to be able to navigate bright lights, loud noises, extremes in temperature and crowds of people except you. It means re-writing your entire life story from the perspective of the person hidden so deeply under a facade of who-other-people-wanted-you-to-be that you didn’t even know who you were yourself – to the perspective of the person you were actually born to be.

That’s quite a lot to process.

But the last two years have been incredible. My relatively newfound Autism Awareness has meant that I have now made friends that truly get me, that I don’t have to mask with, and that communication with is startlingly and naturally easy. It has meant that I gained the confidence to jack in the job that made me ill and return to my passion: health and nutrition. It meant that I have been able to work with autistic clients to elevate their own emotional and physical wellbeing – to be thriving autists rather than surviving autists. And that I am now able to give workshops in alleviating stress levels for autistic people. Autism Awareness has meant that I have learned to forgive myself for all the things that I thought were signs of being massively inadequate and to begin to appreciate my own unique skills and attributes.

How do *you* become autism aware? You learn from autistic people! You read books and blogs by autistic people. You attend conferences and workshops or watch videos presented by autistic people. You take the time to listen to your autistic friend, child, student or co-worker without judgement, embarrassment, interruption or preconceptions.

And, if you are autistic yourself? Let’s flood the hashtag with our own Autism Awareness! Elevate the autistic voices with recognition, with love and with joy.

Happy Autism Awareness Month my friends! xx

If you are interested in the workshops that I offer please click here.

If you are interested in health and nutrition coaching with me please click here.

How Not to Prepare for a Meeting…

On Monday morning I had a meeting. A meeting for some potential freelance work that I really wanted. An informal chat with somebody I knew enough about via social media to already know that she was lovely. Two short bus rides to get there. The promise of coffee at the other end. Easy right?

Generally it’s good to be clear what your mission is before having a meeting. But because I wasn’t entirely sure what the meeting was going to be about (no scripting – yikes!) I decided that all I could focus on was how I presented myself. I wanted to appear calm and confident; and I wanted to exude a natural inner glow. So this is how I prepped, autistic style*…

Sunday morning

1. Decide, half way through washing up the breakfast pots, that I urgently need to cut my hair. Hack off a good three inches over the bathroom sink. Realise I’ve been a bit overenthusiastic with the layering and that I will have to straighten the hell out of it for a few weeks while hair calms down. Good start Flo, good start!
2. Feel the need to neaten up eyebrows. Pluck. Pluck some more. Finish washing up. Pluck even more…
3. Now that I’m up close and personal with the mirror (which I usually avoid) I note a few inconspicuous blackheads. Do the only rational thing – pick the hell out of them and so leave conspicuous craters in my face.

Sunday night

1. Wonder what kind of bus ticket I need to ask for. I don’t know. Try to script pithiest question I can for bus driver considering I don’t know what I’m asking for. Fall asleep still worrying about this.

Monday morning

1. Get family all sorted and off to school for the day.
2. Sit on bed trying to figure out what order to get ready in and what bus ticket to ask for.
3. Get dressed.
4. Try to cover up the craters I made in my face the day before – without much success.
5. Spend ages straightening my hair as the layers have sprung up overnight so much that I look like I have stuck my fingers in a live socket.
6. Make several attempts at drawing back eyebrows until they vaguely resemble actual eyebrows again.
7. Note that it is raining very heavily outside, meaning that points 4-6 will have been a waste of time before I even arrive at meeting.
8. Change outfit for the day. First one wasn’t warm enough.
9. Clean bathroom thoroughly in case I don’t survive bus journey and strangers see grubby sink. You never know…
10. Realise that I am running out of time if I am to get the bus before the one I actually need to get in order that I am not, under any circumstance, late.
11. Change outfit again for the day. Second one looked weird.
12. Make a note of earlier points in order that I will remember and be able to write this post later in week.
13. Text my friend Rhi because I can’t figure out what to eat for breakfast and I still don’t know what bus ticket I need to ask for. These are tricky questions for her to answer as she a) does not know what food I have in my house and b) has never bought a bus ticket in the Bristol area before because she lives and drives in Wales.
14. Dump contents of bag all over table in order to run through checklist: charged phone, headphones (last time I forgot these on the bus I nearly cried for the whole journey), essential oil roller (because bus smells make me nauseous), sunglasses (it is dark and rainy but I sometimes need them to dull visual distractions), house key, blue biro (because black biros are weird), wallet, money. Put it all back in. Pour it all back out again to check. Repack.
15. Put on boots.
16. Change outfit again. Third one didn’t work with boots.
17. Breathe. Ground myself. Berate myself for not doing this earlier.
18. Run for bus, checking bag constantly to make sure I still have phone, headphones and money. Worry about what ticket to ask for while I wait ten minutes for the bus.
19. Forget scripted question and babble incoherently at bus driver who kindly figures out ticket for me and helps me with card payment because I can’t work out machine.
20. Panic for entire journey and arrive with a full fifteen minutes to spare.
21. Take deep breath, knock on door, smile and do my best impression of a calm and composed person.

Anyway. My meeting with the very lovely Lizzie went well and as a result I have, this week, been recipe developing for State of Liberty’s wonderful online wellbeing retreats – Huzzah!

I think it will be a while before I go to another meeting though…

*I do know that many people who are not autistic prepare for events in a similar way. That’s ok. You are in good company!