Autism and Challenge

Last September I was diagnosed with autism spectrum disorder level one, a lifelong neurodevelopmental disability. This is the ‘mildest level’ and is given to people who can cope with some situations so well that others do not know there is a difference in the way they process information, but once they get to know them, and see them in more challenging situations, notice the differences.

I was told that it is possible to ‘move up and down the levels’. Although I have never been at a level where I need a support worker, it has certainly been the case that I have moved up and down level one – had some phases in my life where I have felt almost neurotypical and others when I’ve felt very autistic.

I have noticed this most acutely in my response to challenge and what constitutes a challenge. Many easy, everyday activities, which are not challenging for a neurotypical person are often very challenging for an autistic person. This is due to a combination of sensory sensitivity and the anxiety that comes from difficulties with interpreting social signals and processing complex information from multiple sources at once.

I hit my lowest level in my early twenties when I was in the second year of university when I had what I believe, looking back, to be an autistic meltdown. This was brought on by the combination of the pressures of achieving a good degree and by poor lifestyle choices – going out drinking and taking drugs two or three times nights a week disrupted my sleep pattern and left me with insomnia, anxiety, and experiences of derealisation.

A massive panic attack on the motorway led me to give up driving. It was a challenge to get out of the house, onto the bus, and to university. I sat at the back in lectures, crying quietly, silent tears running down my face. Everything, everyone, was threatening. When I talked to my lecturers I felt so panicky and light-headed I thought I was going to faint or float away. One day I sat alone staring at a tomato on my sandwich unable to recall what it was.

Nobody noticed. When I had occasional sobbing fits or freaked out about something the response of my ‘friends’ was ‘Lorna’s going west again.’

***

Eventually I sought help. I had a good doctor. We worked out that sleeping tablets and beta blockers weren’t helpful for my insomnia or panic attacks. I got put on a medication called Venlafaxine that helped regulate my sleeping patterns and mood and allowed me to establish a healthy sleep and exercise regime.

Unfortunately, when I was referred to a psychiatrist, I was told I wasn’t eligible for treatment because I hadn’t attempted suicide, in spite of self-harming.

Luckily the medication and developing a good routine helped (it was also helpful that I couldn’t drink on Venflaxine!). I ‘got better’ and, in my third year, got 80% in my dissertation, resulting in a first class degree in Philosophy and English.

Since coming off medication I have had many ups and downs. Sleep and exercise have been the key to leading a near-normal life, but I have been unable to overcome a number of challenges that neurotypical people can handle.

I failed to cope with working nearly full-time at the same time as studying for a PhD (as I didn’t get funding). When I worked as a groom I struggled with six day weeks, late nights and early mornings, and the stress of preparing for competitions.

During the period I moved back in with my parents and devoted my time to my spiritual path and writing, at some points working part-time and at some not at all, I was able to live by my ideal routine, getting up early, doing my devotions, writing, exercising, gardening, early bed. But the benefits of this lifestyle were overshadowed by my anxieties about my inability to make a living.

***

When I realised I would never be able to make a living from my writing I turned to conservation, as something I’d volunteered in, and believed in. Slowly I took the steps, faced the challenges, of progressing from a volunteer, to a volunteer intern, to a trainee, before moving into ecology.

As an autistic person every new thing was challenging – travelling to a new place, meeting a new group, learning a new task or to use a new tool. On my first day as an intern at Brockholes I was terrified of using a radio due to how self conscious I felt about my voice and of losing the key to the tool cabin.

With support I progressed to being able to do most of the tasks needed for the smooth running of LWT’s flagship reserve including driving the pick-up (which I was, at first, extremely nervous about reversing due to poor spatial awareness).

It helped that I figured out I was autistic when I was in counselling for anxiety at this point, so was able to locate the root of my limitations and explain them to the reserve officers, who were both supportive and understanding.

My traineeship with the Lancashire Wildlife Trust on the Manchester mosslands was even more challenging not only due to the long drive but to stepping up from a volunteer into a paid role and taking on more responsibility.

I faced and overcame a number of challenges such as leading volunteer work parties and AQAs, passing machinery tickets, and carrying out surveys. I coped because I was open with my line manager about my autism and he gave me a manageable workload and a regular routine.

Completing my traineeship gave me a lot more confidence and led to me gaining a new job as a graduate ecologist at a local ecological consultancy. This job has brought its own challenges – new surveys, new vans to drive, driving to new places, and, again, my manager and my colleagues have been very understanding about my autism and allowed me to tackle one thing at a time.

The thing I have found most difficult, which surprised me at first, but shouldn’t have done looking back, has been dealing with night work. During my traineeship I had a fixed routine of getting up at 4.30am, doing my devotions and meditation, exercising, then working five hours onsite and two and a half hours admin from home flexibly, eating, bathing, studying and/or writing and getting to sleep by 8.30pm.

Going out to do great crested newt surveys when I would be going to bed and getting in a few hours after my bed time has been draining and disorientating. The next day and, for a couple of days afterwards, I’ve not only felt tired but been in a low mood and had trouble concentrating and with fending off negative thoughts that don’t usually come through when I’ve had eight hours sleep.

It has been a blessing to be part of a team who are very aware about mental health. I have told my manager how important both sleep and exercise are to maintaining my mental health and we have agreed that I never need to start earlier than 8am, so I can get my exercise in, and I can do only one night a week. In a profession in which night work is central I am very grateful for this.

In the couple of months I have been at Ecology Services Ltd I have not only learnt to carry out surveys, but the process from start to finish, from speaking to a client, setting up a quote, organising the survey, doing it, and writing a report, and found a great deal of pride in doing the job and doing it well.

At present I’m coping and feel like I’ve grown in confidence quite a lot. However, I am apprehensive about the fact that the nights are getting longer and that bat season, the busiest time of the year, is approaching. I am hoping that, with continued support, I will be able to make it through the summer.

Birthday Dragonfly

I.
You land
on her sky-blue
shoulder

four red dots
on the webbing
of your wings

red-tailed

eyes brown
and flickering
swivelling

like a rock star
with a guitar

washing soap
from your face
as if preparing
to make

a confession.

II.
It’s the 19th
of November

and over a year
since the accident
when my bike
met wings.

Since I
listened to
your message
and obeyed
the summons
of wetland
things.

III.
It is not you
who needs to confess
to make it up to the land
somehow but I

preserving
your pond from
willow and typha
and phragmites.

In this work
I forget my anxiety.

IV.
I can push
a wheelbarrow,
wield a mattock,
loppers, saw,

not like
technologies.

Weep for the willow
but know it will
survive

far longer
than electricity.

V.
In the midst
of the lockdown
the sun shines on
my birthday.

And you
are red on blue
washing the suds
from my eyes
clearing

the ponds

teaching me joy.

*I record my accidental killing of a common darter and the impact it had on my life HERE.
**These photographs were taken at Fishwick Bottoms Nature Reserve, Preston, where I currently volunteer on a Thursday.

Lockdown – life in a bubble then… pop!

For me the lockdown has been a safe bubble and has had a number of benefits. I’ve had the opportunity to cultivate a better relationship with my immediate reality at home, where I live with my parents. I’ve been doing more gardening and this has included food growing. We are now self-sufficient in lettuce, green vegetables, and fresh herbs. This has fitted with having more time to cook with them, to make tasty meals from scratch, my favourites being pea and mint soup and minty lamb stew.

The raspberries long ago strayed from their patch and ramble freely around the garden and they have gifted us a brilliant crop this year in spite of the rain.

I’ve had the time and space to begin repairing my mental health. I’ve struggled with anxiety all my life and, since my late teens, used alcohol as a way of self-medicating. I stopped drinking in January and, over the last few months, have completed a series of counselling sessions through the Minds Matter service.

This has resulted in me finding out that the source of my anxiety is likely having Asperger’s and that’s why I struggle with loud, noisy social situations, whether in public or online, and thrive on time alone or in quiet company, working on the land, in devotion to my gods, and nurturing my creativity.

In the place of alcohol, which obliviated my worries only temporarily, I’ve developed some worry management strategies. This has included keeping a worry diary and assessing whether a worry is practical or hypothetical. If it’s practical I have problem solving techniques to deal with it, and if hypothetical, a technique of setting it aside for a worry period so it doesn’t interfere with the rest of my day. This has made my worries seem less overwhelming thus I’m less worried about worry itself. Other small dietary changes like excluding caffeine and cane sugar have helped too.

The most major result is the realisation that my mental health limitations make it more important to focus on my gift – my awen, my creativity. This has led to my next book, The Dragon’s Tongue, in which I explore a myth of origins personal to me and my deities.

From the safety of my bubble I’ve been watching the lockdown ease. The shops, the hairdressers, the pubs opening, the traffic building up. I barely ever buy clothes, decided to clip my hair off, have stopped drinking, and rarely borrow my dad’s car, preferring to walk or cycle, so this hasn’t affected me much (although the busyness of the roads has made walking and cycling more unpleasant).

Yesterday, however, my bubble finally went pop. I cycled to Brockholes Nature Reserve for the first time since its reopening for a walk. My long term plan for finding paid work that doesn’t have a negative impact on my mental health has been getting a job in conservation which involves working outside alone or in the quiet company of other staff and volunteers. I was due to begin an internship at Brockholes to gain the necessary experience before the lockdown began and it was postponed.

On arrival I was pleased to see the meadows in flower with a mixture of lady’s bedstraw, thistle, vetch, ox-eye daisies, red campion, ragged robin, bird’s foot trefoil and other wild flowers.

Yet when I walked past the office I saw and spoke to the reserve manager, who informed me there have been staffing cuts. Everything is up in the air at the moment. If I was still to take the internship there would be less work and my opportunities would be limited to ‘income projects’ with less conservation.

The prospect of finding paid work with the Lancashire Wildlife Trust or any other conservation organisation is looking bleak. As is finding employment in any sector aside from key work. The future, due to coronavirus and the environmental crisis is a great unknown, with little chance of ‘normal’, much less ‘better’.

Still, I’m going to continue with my internship and other conservation volunteering whether it leads to paid work or not as I value the work of the Wildlife Trust and it is a way of serving my land and gods.

And I’m going to pull my bubble back around myself for a while and continue to use this opportunity to ‘tend to my domain – myth, gods, and the soul’, as my deity advised this morning.

My Hawthorn Mind

Beneath the tall blue sky the white-blossomed hawthorns dance. Twisted, gnarled, they are beautiful in their imperfection. They cast no judgement on themselves or others.

People are not like trees with their constrictive norms of body and mind. Look at me from the outside and (aside from the lockdown hair which resembles something between a hedgehog, a mushroom, and a duck’s arse) and you will see a ‘normal’ thirty-eight-year-old woman – able-bodied, physically fit, average-looking. Talk to me at a Pagan or poetry event and I might pass. Get to know me over a few days, a month, a couple of years and you may notice the scars, physical and psychological, catch a glimpse of my hawthorn mind. The twists, the gnarls, the thorns turned out and in.

Since primary school I’ve felt mentally crippled. Highly intelligent but socially inept. Being speccy-four-eyed, pot-bellied in my puppy fat, and lower middle-class with a southern accent at a school on a northern council estate (which was once referred to as ‘the Beirut of Preston’) didn’t help. I was mercilessly bullied.

Eventually I learnt not to talk about the fairies at the bottom of my garden or my imaginary friends. To feign an interest in the other children’s gossip about each other and celebs and to watch the soaps so I could join in (even though I hated them and would much rather have been lost in the imaginal worlds of the Faraway Tree, Narnia, or Krynn).

When I hit my teens I found a crutch. Alcohol. It helped me disguise my social limp, to keep limping along when otherwise I’d have fallen flat on my face in a gormless heap. It quickly became a cure-all. It obliviated, for a while, my feeling of being different. It helped me find words when I had none, to kiss boys when I had no desire to, to find oblivion when I could not sleep, to dance when I wanted to lie down and die.

Between the drink and the drugs and working hard toward my philosophy and English degree I sometimes wondered what was wrong. It wasn’t until my third year when I had a particularly bad meltdown during which, in vision, I was sitting on a rock at the end of the world unable to decide whether to live or die, that I decided to seek help.

I got a standard diagnosis of ‘anxiety and depression’, a packet of anti-depressants, and a referral to a psychiatrist who refused to help me because I wasn’t suicidal at the time, despite having constant panic attacks, suffering from insomnia, and self-harming.

The anti-depressants worked and, perhaps partly because I couldn’t drink on them, I excelled in my final year. I gained a first by getting 80% on my dissertation on the sublime, the writing of which, unknown to my tutors, was my way of understanding the undoing of my own mind by panic brought about by social and/or sensory overwhelm.

After failing to get funding for my PhD, with a career in horses, and to write a fantasy novel, all the while continuing to battle with anxiety and depression and using alcohol again as crutch, I finally met my patron god, Gwyn ap Nudd. He helped me find meaning and purpose in my life as his awenydd, taking me to other worlds, and out of myself to perform poetry. For the first time in my life, in service to him, I did not fail. I wrote three books and the climax was the performance for Gatherer of Souls.

My depression lifted. I found I didn’t hate myself, others, or the world so much any more. When I discovered the possibility of finding paid work that fit with my vocation and hoped wouldn’t be too taxing on my mental health through volunteering with the Lancashire Wildlife Trust I found the strength to kick away the crutch.

Yet the anxiety I had been using alcohol to medicate remained and threatened to be my undoing as my dread of social situations and feeling of being overwhelmed grew. I tried the doctors again and, this time, refusing anti-depressants, was offered counselling.

Three months on, in the midst of lockdown, I’ve started CBT and, during this period, had a revelation that came not from my counsellor but from my mum which explains why I feel so different: she’d always thought I had Asperger’s, but didn’t know how to tell me!

Suddenly everything made sense. My highly focused interests: philosophy, horses, visionary poetry, Brythonic polytheism, my singular devotion to Gwyn. My problems with social communication and human relationships and inability to understand how other people can want to talk about each other and celebrities rather than pursuing ‘that one thing’. That my feelings of panic and overwhelm are symptoms of autistic meltdown.

That this is the reason I have been stuck in a constant cycle of wanting to find paid work and to have a small role in my communities locally and online, but failing because I don’t recognise the limitations brought about by Asperger’s, which lead to me getting anxious, overwhelmed, and burnt out, and giving up, and feeling like a failure.

That it’s likely I have Asperger’s was confirmed when I scored 7/10* in the AQ10 test on the phone with my counsellor a couple of days ago. I’m hoping for a referral to the Lancashire Autism Service (which I understand will take a while particularly at this time).

Looking back a part of me feels bitter. If I’d received a diagnosis as a child perhaps I would have recognised my limitations, wouldn’t have hated myself so much for being different, wouldn’t have got so anxious and depressed, (yet another whispers perhaps I’d have felt worse…).

Another part says I wouldn’t have learnt the lessons I’ve learnt. It’s possible that, living a more sheltered life, ‘the doors of the perception’ to the visionary realms would never have opened, that I’d never have met Gwyn and never become his awenydd.

My gut feeling is that now, during the lockdown, when I’ve got plenty of time to reflect on and process it and work through how it might affect me in the future and plan ahead, is the perfect time to find out. I might have gone to pieces otherwise.

As I walk beside the twisted white-blossomed hawthorns I come to understand my differences. To not only accept but celebrate the twists and gnarls of my hawthorn mind.

*6/10 or above suggests somebody has Asperger’s.

Fragments of Annwn – Fallings

The Broken Harp

I.
My nerves are timbres.

Taut and tense the ganglia
no longer relay the music.

Weak, worn, frayed, spent,
the tendrils torn and stretched
from the strings of a harp.

Like broken bowstrings
they sting and twitch.

II.
On the empty frame
the ‘devils’ of Annwn sit
and mock and chatter.

I cannot take my eyes
from their neat little fangs
and paper-like origami wings.

I cannot shut out their voices,
low, high, squeaking in the wind,
fat with my stolen melodies,

for I am strangely in love
with my distractions.

I court them feed them daily.

I have become their instrument.

And so I lie broken beneath their claws…

III.
And where is my god? Not the harpist
or the one who taught him but the one who
listens for the song in his eternal hall

where the harp played with no player at all?

Is he still listening? Waiting? For the bow
to be restrung? For the song to be sung? For
the arrow that will pierce his heart fine and true?

~

The Place Where the Sky is Falling

In the place where the sky is falling and the winged and the wingless ones with it I am galloping. The faster I gallop the faster it falls and the faster they chase me, swishing, swooping, on wings and not on wings (yet still sounding torn and leathery and creaky-jointed), with and without teeth and claws.

As a little experiment I touch a rein, a brief half-halt, steady from a flat-out to a slower gallop. The sky-fall slows, the flight of the ‘devils’ of Annwn who pursue me, the winds of the abyss that drive us all. I slow to a canter, to a trot, to a walk, pull up. The sky is still. The winged and wingless ones hang before me like puppets on strings, immobile in the air, without a single wing-beat. I frown. They frown. I move my left hand. They move to the left. I move my right hand. They move to the right.

“Is this some game?”

An eruption of laughter flows through them, breaking the strange spell. They shift, flap, nudge, jest. Some fly away and others descend to look on this strange phenomenon of an awenydd in Annwn.

“What are you?” I ask. “Are you devils?” For that is what Christians have called them for hundreds of years and they do look like something out of Doré’s woodcuts for Milton’s Paradise Lost. Yet I have a feeling they have existed in the Otherworld before the Christian imposition of Heaven and Hell.

They laugh and shriek and pull their grins wider with their foreclaws like demonic Cheshire cats.

“Seriously…”

“Fliers,” squeaks one. “Fliers, fliers,” the others echo. “Fliers.” “Clawers.” “Takers.” “We take…” “We take what you feed us.” “We feed.” “We bring the takings.” “We bring what you feed us to the abyss.”

“Cursed, cursed.” “We cannot set down our feet.” “We have no feet.” “We fly between the worlds knowing nothing but taking.” “We even sleep on the wing.” “Ours is the dream-storm over the abyss.”

“What have you taken from me?” I have no wounds but no teeth and no claws leave no mark…

They cackle, grin, smack their lips. “What you fed us.” Their mouths purse like secrets.

“Then you are welcome to it,” I incline my head in acknowledgement, “add it your storm of dreams.”

I depart at a slow walk knowing gratefully in Thisworld I will dismount onto the ground onto two feet.

~

It’s Easy to Fall

and keep on falling
when there is nothing
to hold on to – no can,
no bottle and its easy

soon empty comfort.

Its gentle guidance
down into oblivion.

(It is an illusion the
abyss has a bottom).

It’s easy to fall
and keep on falling
when you don’t know
how to do anything else.
Because no-one taught you
how to tread empty air.
How to breathe when
there is no oxygen.
How to balance when
there is nothing between
your two empty ears.

How to hear what
when there is nothing
beyond the abyss?

It’s easy to fall
and keep on falling
unless some unexpected
hand reaches out to
shake you from

that free fall before
you wake with a jolt –
upright in your bed.

It’s easy to fall
and keep on falling
before some person
or some god gives

you a task only you
can do. HERE. NOW.
Where there is land to
stand on air to breathe.
Hope on the horizon.

~

Why These Worries

I do not need unlike the wind that moves the washing?

Why the fear that if they stop I will be nothing
like a lump of a coal in the toe
of a Christmas stocking?

Why do I feel worthless
when I am wanted by a god?

Why do I feel like a failure
when I’ve written three books?

Why does it feel more heroic
to be battling on against these thoughts
when I could let them go to the graveyards
of the winds beneath the towers
from which they were born?

How big a grave for a thought?

How great the work of the gravedigger?

How to engrave the gravestones
with suitable death’s heads?

And if I should let them slip away…
If I should carry them like childhood toys
gifted on Christmas morning then broken by bullies
in cardboard boxes like little coffins (each has a face like my own
like in the fairy funeral and the Fairy King sings
a mournful chant as I lower them in)…

how do I know I will let them rest

and not dig them up like a restless hound?

Come, come, a blast on his horn, come away
from my graveyards and away from mourning.
Spring is here and flowers and hares to chase.
In these sunrise mists a new hunt dawning.


~

*These poems are based on journeys to Annwn undertaken during the process of giving up alcohol as self-medication for my anxiety (which I began on New Year’s Day). This forced me to stop falling, face my worries, and see them for what they are – distractions from my work as an awenydd devoted to Gwyn.
**The image is Doré’s ‘The Fall of Lucifer’ (courtesy of Wikipedia Commons).

It was not the storm

that broke me or the storm
before it or the storm before it.
Ciara, Brendan, Atiyah, even
distant Ophelia or Freya.

It was not the winter storms
of 2013 – 2014 before storms
were given alphabetical names.
It was not the St Jude storm,

the London or Birmingham
tornadoes, Storm Kyrill – killer
of 11 people, the Great Storm
of 1987 or any of the storms

before I was born in 1981.
It was not the cliché of the storm
within although winds have swept
through my branches broken

my fingers swayed me that way
and this like a sapling turned me over
like a hay wheel rattled me like
a bag on a barbed wire fence.

Rain has flooded my landscape,
rising up over my pagodas and bins,
my fountain and its four nymphs,
washed away all my bridges,

receded to leave a mottle of reed,
rainbow puddles to splash wellies in,
birches surprising in their reflections
like Rimbaud illuminated in 1876.

It has cleaned and cleansed me.
My Taekwondo belt is blue and green.
I am learning O Jang I but I do not
call myself Master of the Wind

for I do not know what broke me –
childhood bullying, a neurotic father,
a defective gene or something deeper
within? But it was not the storm.

*Arthur Rimbaud wrote his Illuminations in 1876.
**O Jang means ‘Wind’ and it is the fifth pattern in WTF Taekwondo.
***I wrote this poem in the aftermath of Storm Ciara during which the Ribble broke her banks at Avenham and Miller Parks and further upriver.