Will the Real Me Please Stand Up

Decades under the radar of female autism

Last November, two months after I turned 68, I was diagnosed with Autism Spectrum Disorder. Before the naming was changed in the DSM last year it would have been Asperger’s or High Functioning Autism. I don’t mind what it’s called, I don’t mind having another label to join the others, the main thing is that I have a diagnosis that is helping me begin to make sense of my life. I certainly don’t care about the possible trappings of the label. Having been in the mental health system for an awful lot of the time since I was 18, I’ve got used to it.

Characteristically the thought that I might be neuro-diverse came from a book I’d bought on Dyspraxia. I’d been diagnosed with Sensory Integration Dysfunction at 50 and as my difficulties with balance increased I decided to research dyspraxia. I found that my symptoms of SID and those of dyspraxia were identical. Was it an alternate name for the same condition? What I then found was that those symptoms overlapped with ND conditions on the Venn Diagram at the back of the book.

A visit to my GP, and a referral to the newly set-up Autism Service led to an assessment. My ‘scores on the doors’ indicated that I was incontrovertibly on the spectrum. In fact, despite being ‘high-functioning’, I was quite seriously affected. Since the diagnosis of ASD I’ve read countless articles and watched numerous videos to help me get a handle on it. That has been amazing. More specifically it’s opened my mind to how ASD has affected me, mostly negatively, throughout my life; I now have the potential to turn that around.

Watching people who describe their day-to-day experiences is awesome. They are awesome. And I can’t shout my thanks loud enough to the professionals who’ve given me insights into what’s been going on in my life, from the Clinical Psychologist who diagnosed me to the Doctors and Professors I’ve watched on the internet.


A Day in the Life

Today is Monday. Last Friday we had visitors, a family friend of my husband from way back who I’d met a few times before. With her were two of her friends who she was staying with and who had known the area when younger. I was fine with it, showing them around the garden and our home, ‘chatting’ about what we’d done to the property since we’d moved in five years’ before.

Thinking about it now I know there wasn’t much ‘chatting’. I talked facts. I only spoke with one of them at a time and usually, when outside, when we were distanced from the rest of the group. Indoors I addressed myself to each of them as individuals. A bit like an interviewer eliciting information or responding to questions in a very focused way.

Three days’ have passed and I’m still feeling exhausted. I’ve been weepy each day. I’ve been more jumpy, sensitive to noise and light. More sensitive to perceived irritations of the mind and the body. I’ve dropped more things. I haven’t engaged with the crafts that I would usually immerse myself in and opted for simpler food combos that don’t need too much prep. But the main change has been that I’ve fallen asleep in my chair after lunch.

In the past when these changes in me had been apparent I put it down to low mood brought on by unknown factors. I’d be irritated with my husband for his (constant) questioning about the reasons. Sometimes – often – I’d lash out verbally or physically, sometimes both. A mood, a backlash, that came from nowhere. Now we both know what’s happening and where it’s come from and how to deal with it. We can even name it: ‘social exhaustion’.

As soon as you learn something’s name you can start to take control over it. This is the powerful message behind the folk tale of Rumpelstiltskin. This is why I’m not against labels because these can often be the key to research and knowledge.

Daily habits to get me through

Routines – knowing what’s happening, what’s going to happen, what’s expected of me – are all vital to keep me on kilter.

It’s often quite difficult to keep others on side with this need. Things happen. Some are vaguely expected, some are totally unexpected, and others fall somewhere in between. So I benefit from having my own simple checklist of what I do each day, not to an absolute time-frame, but within three distinct periods of the day.

At the start of day, usually before dressing, I do my workout on a rowing machine because this gives me a whole body exercise that doesn’t overly tax my co-ordination nor my joints (I have dyspraxia and am developing arthritis).

I do a 3 minute ‘Breathing Space’ exercise and walk in the garden if the weather permits! and the rest of the ‘in between’ activities are pretty flexible depending on my interests at the time.

The end of the day is winding down time and time for reflection. I’ve yet to master going to bed early.

I’ve been doing this for two months and so far it’s working to keep me on track. If you think the idea may benefit you, have a go at making your own chart. If you’d like to use mine as a starting point, please feel free to message me for a copy.

Triggers: a poem about sudden changes

What pulls the trigger, flicks the switch?

Turns me into devil or witch?

All that’s positive, all that’s good

banished to hell and bathed in blood.

Search for balance, search for worth,

ways to banish the inner curse,

seek the good of self before birth.

Before rejection – before the pain

before abuse and negative gain.

When evil rears its ugly head

all positive thoughts remain unsaid:

no happy heart, no peaceful soul

no reasoned mind to deflect its goal;

darkest thoughts in darkest cell

no glimmer of light within the hell;

no breath of air just stifled heart

no wings of hope for new-born start.

All efforts now to begin anew

wearying, crushing, exhausting to do.

Tears come far easier than resolve ever does

cutting or overdose a much better option;

so lonely inside myself, hating what I find,

inadequacies of body, inadequacies of mind

can’t look forward, don’t want to look back

don’t want to face all the things that I lack.

Where is the me that sees what is good?

Will it come back before blood is spilled?

Why just the me that knows all the ills?

When can I banish the me that kills?

I’m a person first: a poem about finding my identity

Born on a council estate, couldn’t relate,

Not special, not wild – just council house child;

Feeling awry, not knowing why.

Migration across the world, senses unfurled,

becoming a Pom – caught in maelstrom;

Feeling awry, not knowing why.

Learned language: the twang, idiom and slang,

Then back to Britain – new script unwritten

Foreigner once more, strangeness I wore, nerves stripped raw;

Dumped in a Secondary Mod – wrong place – odd-bod,

Loving school, never cool, acted the fool

Being awry, not knowing why.

A change of school at seventeen,

New people – boys – didn’t want to be seen,

Felt so strange, too much change

Mind didn’t fit, dug into a pit

Imploded in rage, refuge and cage,

Tears and screams, mind’s means,

Behaviour awry, not knowing why.

Medication upped, hospital tried,

ECT thrown in, I knew they lied;

Alcohol solace, body traded for love,

Wrong foot wrong shoe wrong hand wrong glove

escape through soulless days and nights,

hating loving fighting flights

Needing to die, not knowing why.

Optimism burst, self-image worst, but a person first.