A-Z of autism from a personal autistic perspective

‘G’s (from gatekeeping to gratitude).


I completed a research questionnaire the other day about my experience of autism assessment and post diagnostic support.

Two years on, it was interesting to look back on what got me through the process.

I was supposed to seek referral via my GP, but I hadn’t the energy.

For those of us who weren’t recognised as being autistic when we were younger, it’s often some kind of life crisis that generates the impetus to seek autism assessment.

But ironically, just when we need to be able to articulate our difficulties, we may struggle to do so.

I managed to write a logical explanation of what was going on, listing a number of issues then concluding that these all appeared to indicate I might be autistic.

But when I got to my appointment I couldn’t persuade the GP to read the whole thing, which was 1.5 sides of A4.

With hindsight I should have sent this summary to the surgery beforehand, or left it behind.

Instead we talked about the first issue on the list, and I scuttled off, feeling foolish.

I decided this was a gate I couldn’t even attempt to get through. I’d have to go round it.

There is guidance for GPs on autism in adults from @NICEComms and, more recently, @rcpsych.

By any estimation there are significant numbers of undiagnosed autistic people in older age groups.

But it’s questionable to what extent this guidance has actually been assimilated.

It was in everyone’s interests to grasp what was going on.

General Practitioners aren’t specialists and I saw a different doctor every time.

I wouldn’t like to count how much time this took up.

Anxiety, depression and stress are common, so why should they look any further?

I was still feeling grouchy about the way my early onset Dupuytrens’s Disease was handled.

I had to go round the GP to get preventive radiotherapy for that.

I’d become an annoying, heartsink, nuisance of a patient, and I abandoned the idea of getting any help from my GP.

I knew that I needed an autism diagnosis urgently. I couldn’t see how I would ever return to work without it.

So I invested my savings in a private assessment, hoping to get my life back on track.

An online group of autistic people provided fantastic guidance and support.

I’m not at all gregarious, so I was surprised to slip effortlessly into a group of autistic people.

They were gentle and generous.

I didn’t agonise over what I said, or apologise for myself.

And as well as talking about serious stuff, they made threads on #AutisticJoy

I’ve never been much of a gambler so I stacked the odds in my favour by doing plenty of research.

That led me to an autism assessment service with lots of experience of assessing women.

And the fact that the clinicians also worked for the NHS gave me additional confidence.

Up until I got my autism diagnosis I was carrying around an awful lot of guilt.

Once I knew I was autistic it explained a lot. I was responsible for what had happened, but I could forgive myself.

I’d been gullible, but I hadn’t got good defences against glibness or guile.

Knowing who can be trusted has always been tricky for me.

I want to believe that people are genuine. It hurts my heart if they’re not.

The convincingness with which lies can be told was a lesson I learned as a police officer.

But I’d rather be caught out than be cynical.

We sometimes end up losing confidence because of #gaslighting

This is where we’re psychologically manipulated into doubting our sanity, or our self.

Because our sensory, social, and communication traits tend to differ from other people’s, we can quite easily be undermined.

Sometimes #gaslighting happens very subtly. It could be a non-verbal expression of surprise at something we’re describing. Just enough to make us feel insecure.

It can also be much more overt. A denial that something happened, or that a particular conversation took place.

In a bullying situation we’re often in a no-win situation.

Much of the goading we’re subjected to isn’t obvious to other people.

We may even be ‘set up’ in a dishonest and cynical way.

But if we respond we may seem to be overreacting, or seen as causing problems ourself.

It takes a lot of guts and grit to get ourselves out of these situations.

And we rarely emerge completely unscathed.

If we get in the way of ruthless people, we can end up being badly hurt.

Because I believe in truth and justice, I find it hard to give up on these.

One of my favourite books is “Cheapjack", Philip Allingham’s story of life on the road as a fortune teller, grafter, knocker, and mounted pitcher in the 1920s.

He finds he’s blessed with “the gift of the gab” and becomes a bit of a grifter (chancer).

I sometimes find myself making gaffes and feeling gauche when I’m socialising.

Straining to hear in background noise can make me grumpy.

Being in crowded places makes me want to flee and find some peace.

People who are unaffected may struggle to see what the problem is.

Big gatherings suit some people but not others. We only had 20 people at our wedding, including us, and even that felt quite crowded.

There are social expectations we may find it difficult to comply with: looking glamorous, joining in with gossip, and behaving graciously.

One of the strange things about my autism assessment was that the psychologist thought I was extremely good at IT.

I’m very interested in it, but that’s different.

Earlier on I was trying to remember some of the search engines I used, pre-Google


I’m also fascinated by gadgets, gizmos and various kinds of geekery.

One of my favourite shops as a child was the hardware store.

And there’s nothing I like better these days than sorting through tools and assorted fixings in the workshop when my partner isn’t there.

There’s something very gratifying about solving a practical DIY problem.

I had a few disasters, like hammering a nail into a water pipe, but I discovered a matchstick is a temporary fix.

When I met my partner I was proud to find that my electric drill was better than his!

I often ground myself by working in the garden.

I’ve been missing the physical side of this during the winter months.

In the summer I carry heavy cans of water up and down even though I’ve got a garden hose.

Kneeling or sitting on the ground also has a calming effect.

Today is the 13th anniversary of my wedding day.

And at this very moment, 5 years ago, I was sitting by my partner’s bed in hospital.

We’d been out for lunch, then he collapsed in the evening with respiratory failure.

It was several scary weeks before he was diagnosed.

In a five week period I had to phone 999 five times.

My partner was taken to hospital 3 times, and given oxygen and nebulisers on the other occasions. He had two hospital admissions.

The sixth time we couldn’t wait for the ambulance, so I drove him to hospital myself.

My partner very nearly died that day.

Driving to hospital as his breathing failed was agonising.

Each red light cost us precious seconds.

So much depended on getting them to see him immediately.

When they checked his oxygen SATS was only 82.

He was kept in for a week.

I’ve always been thankful for small mercies.

But my partner surviving these acute health crises was such a huge mercy.

I felt so incredibly grateful.

It was the catalyst for me to give up full time work.

And we sold our house and relocated.

I’m still processing it.

When the first wave of the pandemic hit streams of ambulances with wailing sirens sped along the main road all day.

I tried not to panic, repeating “help is on its way” like a silent mantra.

If I happened to be out on my own, I’d find an excuse to phone home, just in case.

So far my partner and I have escaped Covid, for which I’m grateful.

But the tragedy of the millions of lives lost, and changed forever, fills me with sorrow.

Grief hasn’t fully hit home yet. We’re too busy getting on with practical things.

The tears will come in time.


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More from @NortherlyRose

8 Apr

There were three of us out walking today, because it seemed churlish to leave my partner behind on our wedding anniversary.

We found a footpath leading down to a small reservoir.

It was a bit like being by the sea with the waves rolling in.


We decided to walk the whole of the service road around the edge of the reservoir.

We weren’t far from one of our usual walks, but it was good to have some different views to look at.


The rain caught up with us part way round but Izzy didn’t mind.

She has a lovely warm undercoat and her top coat is water resistant.

A good shake now and then and she’s happy.

The moss and lichen on the old stone wall were beautiful.


Read 4 tweets
7 Apr

A-Z of autism from a personal autistic perspective.

‘F’s (fascination, focus and functioning)


What stands out to me about my childhood was how fascinated I was by everything.

I often remained incredibly focused on activities for long periods of time.

Until I got my autism diagnosis, two years ago, it hadn’t occurred to me that this might be seen as ‘dysfunctional’.

2/ Small child with bobbed hair and short fringe gazing downwar
Fascination and focus have been functional for me in career terms.

They have also helped me bond with people I love.

I prefer fairly serious forms of ‘fun’.

And I find deep conversations more fulfilling.

My ‘focus’ doesn’t seem ‘hyper’ to me.

It’s part of the way I am.

Read 30 tweets
6 Apr

It was so windy today we went up to the hills in my tiny Toyota, not the high-top campervan.

It was bitterly cold but sunny with some lovely cloud reflections.


1/ Clouds reflected in the rear window of a car.
Izzy wasn’t bothered by the cold or wind, being up here always seems to exhilarate her.

I was glad to be wearing my eBay bargain £6 salopettes.


We got almost to the halfway point of our walk when the weather started closing in.

Time to begin heading for home.


Read 7 tweets
6 Apr

A-Z of autism from a personal autistic perspective.

‘E’s - enlightenment and emancipation.


When I discovered I was autistic, just over two years ago, my emancipation began.

It was enlightening to realise why so many aspects of life had been effortfully exhausting.

Even lovely, enjoyable events could completely drain me.

At last I understood why.


I had often had to ‘get out of’ social events that I feared I’d find overwhelming.

And employment in roles that required a lot of social interaction left me exhausted.

This made me feel really pathetic.

But now I had an explanation I understood and embraced these limits.

Read 30 tweets
5 Apr
Because I love books, alliteration and #RachelJoyce I bought myself Miss Benson’s Beetle.


The blurb at the beginning is beautiful.


There are even questions at the end.

Wish I was still running a

Read 4 tweets
5 Apr

A-Z of autism

From a personal autistic perspective.

‘D’ words (the disaster zone!)


A lot of the D words used about autism are potentially damaging.

Deficit, disorder, developmental delay, dangerous, disaster.

We’re encouraged to feel a sense of despondency, to see ourselves as damaged goods.

Why else would people research ways to prevent or cure autism?

The diagnostic criteria set out in DSM-5 evoke despair:

‘Deficits in social-emotional reciprocity.’

‘Deficits in non-verbal communicative behaviours.’

‘Deficits in developing and maintaining relationships.’

Replace ‘deficits’ with ‘differences’ and it transforms things.

Read 20 tweets

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