Cataclysm

77-2017-02-25-21-38-12It is now just over a week since I received my autism diagnosis. I had been hoping to “celebrate” that mini-anniversary today, but, as happens, life throws things in the way when you’re least expecting them, so I am having to devote a lot of brain space to dealing with something else currently. The week that has passed since my diagnosis is therefore, today, being “quietly noted” and little more.

If I am quiet here for a few days, then please forgive me. I might need a few days. My organization of my blog posts is also a bit lacking, and I need to do a bit of catching up with filing and sorting (when you find yourself using the search feature on your own blog to try to find out whether you’ve already posted that bit of writing you know you need to do a bit of sorting). Now that I have my diagnosis I’d like to make some sort of reference guide here (better than the Blog Guide) so people can follow the diagnostic procedure. I’m aware that new people have now started reading this blog and following it and might feel like they’re arriving part way through something. I’d really like to categorise and get the tags and so on a bit more useful, particularly for other autistic people and those who are keen to learn. I’ll try, but for now I need a little space. I’d also really like to write up last week’s assessment, but have not yet been able to find enough words and my head is still processing everything.

There is much to be done. I am trying to do what I can as well as I can as fast as I can, but my capabilities are currently not very good, so it might be slow progress. But I am very grateful for so much feedback and so on here, and for the people who have liked the facebook page and people I don’t even know who have said how much what I write resonates with them.

I wrote the words below a few days ago, with the title above. That title describes the state of my head right now, for several reasons. Things change. Autistic brains need lots of time to process change. In the meantime, they don’t necessarily work very well. I am doing my best. Please don’t ask any further – I’m not currently able to answer questions, and my capacity to produce words, even typed ones, has reduced again recently. I need a few days on the sofa, curled up under a blanket, rocking gently, staring at junk telly. My husband is, as usual, being magnificent, and caring for me brilliantly.

It still feels like a dream.
Like I will wake up at some point
And I will be in a tent in a field.

It will be summer 2016,
The point at which something was spotted
And mentioned, by several people.

After 45 years of a life that didn’t fit,
Full of difficulties and mental illness,
The truth started to reveal itself.

The more I learnt,
The more I discovered
That my “normal” was “different”.

I started to investigate my past
And found out
Just how many things tallied.

I started to adapt to my changed reality,
But needed a firm answer,
A piece of paper.

So I asked, and I filled in forms,
And I wrote down information.
120 pages of it!

I waited, and I endured an appointment
That nearly finished me.
And did not help.

But now I have the formal answer.
I know why my life has gone
So badly wrong so many times.

The process of discovery is over
And the rebuilding of my shattered life
Can now begin.

It feels surreal, like a dream.
It’s good. I know it’s good.
The relief at all now making sense.

But it will take time for everything
To feel “normal” again and for my head
To recover from the cataclysm.

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Go Gently…

76-2017-02-24-13-40-18The message I receive
From those who have been here
Those who have discovered
Late in life
That they are autistic

Is

That this processing will take some time
And will not always be easy.

And I need to go gently.

I am listening to these people
And I am listening well
Because they have been here
And they know
And their neurology is the same
As mine.

I said from the start
Right back in late August 2016
When the autism hypothesis (now accepted)
Was formed…

That this will happen at my pace
In my way
According to my schedule.

And everything I hear
Confirms that.

“A couple of years”
Seems to be about the time
Taken
For full processing.

And,
Of course,
I need to recover from burnout.

I know I need
To stim
A LOT.
A very very lot.
The minute I started to listen properly
To my body
That became obvious.

What I am struggling with
Is how much
I cannot do.

How much
I need to rest.

How much time I need
To spend
Alone.

I have the biggest
FOMO
Ever.

I have pared back my life
But I need to cut even more.

And life continues.
Much of it
Is not optional
And must be dealt with
Appropriately.

My emotions are confused
And unidentifiable.

My functionality is also
Very very poor.

But at least the process
Is now started.

I will emerge.

Eventually.

Still Processing

75-2017-02-24-13-42-19I’m in one of those slightly frustrated phases right now. One where my brain really wants to get on and do things and to try to sort out my life, but my mind is still very very busy processing recent events. It’s now just after midday on Friday and I feel as though I should be able to “just get on with it” now, although I’ve just calculated that it’s nearly 96 hours since I received my diagnosis, and, when I put it like that, it’s no wonder I’m still trying to take things in and trying to work everything out. And when I then remember that I’ve never been very good at processing feelings, it’s even less surprising.

My week so far has run thus:

Monday: Five hour autism assessment in an unfamiliar town, concluding with clear diagnosis that I am autistic. Drive home and sit, almost unable to move. Sleep a little. Eat a little. Drink wine.

Tuesday: Utterly exhausted. Hardly able to process. Wrapped in compression bashing myself against the sofa. Short blog post written but unable to post. Good feelings, but not ones I can articulate well. Relief. Shock. It’s real.

Wednesday: A bit more functional. Able to post on the blog and write a couple more posts in draft. Sort the house a bit. However, start to feel ill in the afternoon and completely lose speech early evening. Speech never returns all night.

Thursday: Attempt to get up at reasonable time but fail. Head won’t work properly at all. Publish one of the draft posts. Afternoon lose functionality and retreat under weighted blanket. Attempts to sort out jobs lists fail. Plan to do stuff tomorrow.

Friday: Finally make it out of bed around midday after frustrating morning in bed. Realisation that things I wanted to do today are beyond me. Just getting this far is an achievement. I also had a spell trying to establish whether I was lonely or bored – I’m not sure I can distinguish between the two.

If I stop beating myself up (not literally – though the impulse to tear chunks out of my skin is very very strong this morning and is taking a lot of energy to resist), then looking at this objectively, I see that 96 hours out from receiving an autism diagnosis at age 45, it’s actually not that surprising. I know from what I’ve read on forums and groups and in books that getting a formal diagnosis is an amazing thing, but I also know that it takes some processing, and moods can be erratic for some time afterwards until the system settles down. My brain and my learning and my reading knows all this stuff. And, I have to keep reminding myself, AUTISTIC BRAINS DO NOT LIKE CHANGE!!!!

I keep forgetting this last piece of information, and I always believed myself to be quite flexible, but when I actually started looking at the evidence it turned out not to be the case. I need a new handbag – my old one is too small (since the advent of multiple pairs of spectacles and lots of stim toys). I have a new handbag. It is very nice. I like it. It will be a very good handbag. But the notion of changing to a different sort of handbag is freaking me out. Bigtime. The new handbag has been waiting for a month so far. I am too frightened to take the stuff out of the old handbag and put it into the new one, because I know it will feel wrong for quite a long time until I get used to it. Autistic brains. Change. Don’t like.

And, of course, this is why we get so tired. Conscious brain has to be employed constantly to compensate for the strong messages coming from the autistic bit. There is the neverending internal fight between what I have always termed “brain” and “mind”. In my head, always, I have had to employ vast amounts of willpower from brain in order to overcome the evident illness (some of which now relabeled anxiety caused by autistic brain) of my mind. The terminology is a bit muddled here I know – I didn’t script this and am trying to write improvisatorily, which is rapidly turning into nonsense.

Back to the script.

What I HAD been hoping to do today was: sort out the jobs list, order a repeat prescription, send a few of the more urgent e-mails (I really need to sort my study situation with the OU because time is getting short, and if I’m to dine in College after a meeting booked for next week then I have to sign in), maybe visit my best friend (haven’t seen him for a couple of weeks and also need to catch up on meetings and assessments and collect my scarf, which I left there), call my mother (again, update on assessment, especially since she provided so much info about me age 0-4 and some beyond that too), hoover the flat (it’s at the point where if we had a visitor we’d have to provide overshoes for them to protect their shoes, but the loudness of the hoover and my sensory system’s state today probably mean that’s out), maybe do some maths (concentration nowhere near sufficient – I’m managing less than a paragraph at a time of my book on my current special interest (Chariots of Fire) at the moment), and what I really wanted to do was to go out and get a coffee and cheesecake (way too late now because the early morning quiet spell will be long finished, but I haven’t had coffee for so long), get a few jobs done (I need to go to the bank and buy one or two things), and maybe go and look at some food and see if I can get inspired to eat anything (I’m currently still on only about 1.5 meals a day, which really isn’t enough).

Of course, lined up like this, it’s obvious that someone who has had the week I’ve just had wouldn’t have a hope of doing all of that. Maybe just being able to list it here will be a start on sorting out the jobs list and trying to work out what really DOES need doing and what can wait for a while.

It’s also been on my mind all morning that I’ve still not managed to get back to proper running. This is not surprising, since I’m still very much in burnout, and the diagnostic process has taken a huge amount out of me, but it’s now looking less and less likely that I will be able to do any of the spring races I still have booked. One of my favourite marathons is unlikely to happen, and with it will go the expensive hotel room I booked last year. I don’t have the energy to do anything about it. Maybe we’ll go and stay there anyway, although at the moment the thought of going to a crowded city to watch a marathon I should have been running in just feels scary. I’d rather be on a deserted beach staring at the sea by myself. I’ve known for ages that my first hundred miler, booked for May, just isn’t possible in my current state, but saying goodbye to it is hard, and to the other marathon I had booked. Again – although I have to do this, it’s change, and again, change doesn’t sit easily with me.

So add all that to the inevitable exhaustion from Monday and it’s no wonder things are a bit rocky right now. I’m also almost climbing the walls waiting for the report from the assessment people, even though they told me clearly and straightforwardly, that it could take up to a fortnight because there was a lot of material to go through and times and so on and don’t panic. But still. I’m impatient.

And, my head is, predictably, making words in a very erratic manner. There are either too many of them (see above) or too few (see below). Writing the words below was probably my biggest achievement of yesterday! Who knows what my biggest achievement of today will be – I’ll have to see what I can manage. But I also need to keep reminding myself that the biggest thing of my life has occurred over the last 6 months and that 96 hours ago it was officially confirmed, and my head will still be processing it all for a while yet and I do need a fair bit of time just staring at a pea factory, curled up under my blanket, and rocking back and forth and so on.

I
Am
Autistic.

Three words.
Define my life.

I knew that
Before the assessment.

But

Now

It is
Real.

Knowledge.
Relief.
Validation.

But also change.

My head
Still
Processing.

I am autistic.
I am autistic.
I am autistic.

Dear head,
Got that now?

I am autistic.
I am autistic.
I am autistic.

Yes, really.

What’s odd is:

Nothing is different
And
Everything is different.

The feelings
(Various)
Strong strong strong.

Huge waves
Of emotion
Alternate rapidly
With
Numbness.

I still need
To let go
And relax

But
Too soon.

Although
Yesterday
My words gone
All evening.

Let the news
Sink in.

Absorb it.

It is big.

Take
Everything

One

Step

At

A

Time.

A Tale of Two Assessments

74-2017-02-22-12-26-06Last time: less than an hour.
This time: nearly five hours.

Last time: fluorescent lights.
This time: natural light.

Last time: just show up.
This time: information given.

Last time: sent materials.
This time: they read them.

Last time: alterations, cancellations.
This time: arranged, confirmed.

Last time: deserted, abandoned.
This time: explanation, care.

Last time: distraught, tearful.
This time: relieved, contented.

Last time: traumatised, scared.
This time: reassured, helped.

Last time: confused, alone.
This time: enlightened, supported.

Last time: injured, devastated.
This time: safe, grateful.

Last time: violent bad feelings.
This time: calm gentle feelings.

Last time: caused more problems.
This time: solved many problems.

Last time: maybe brain injury.
This time: clearly autistic.

Last time: uncertainty and pain.
This time: acceptance and comfort.

Last time: seriously suicidal.
This time: tired but resting.

Last time: no point to life.
This time: a new start.

FKM Officially!

73-2016-12-15-16-23-48I’m still reeling from the events of Monday. My thoughts are still not totally working coherently, and I have a whole bunch of feelings that I can’t identify and am still trying to work out. Both my husband and I are still also massively worn out after months of strain.

Five hours of talking to anyone about anything is something I find exhausting under any circumstances, and when a lot of that talk is to two new people, and the outcome of the process is really important, and a lot of the subject matter centres around my childhood, difficulties I’ve had through life, and the poor state of my mental health, it becomes even more exhausting. I even came home with a sore throat, simply because I’m not used to that much talking!

Yesterday I didn’t even have the energy to open the laptop to turn my jottings into a blog post, though I did complete One Day After, ready to post when I could. The evening of the assessment itself I managed to put up the Announcement (along with a visual fanfare for the picture), and jotted down the following, which never made it any further than a jotting:

Knackered
Shocked
Did all that really happen
Me
Autistic
Officially
Diagnosed

Thirsty from talking
Relief relief relief
They were amused when I said 2002 symmetrical

They asked me what happy felt like
I didn’t know
Perhaps this is happy

There are still so many things to discuss, and to work out, and to sort. Still lots of big feelings that haven’t quite worked out what they are yet. I can’t describe them because I can’t make the words happen properly yet, but I know they’re good. But very big. It’s almost 48 hours since I was diagnosed as I type these words, and it still feels very brand new and different.

There’s something significant about discovering I am autistic after 45 years of a life that kept going wrong in so many ways for so long, and working out why. And the whole notion of what I’d regarded as my normal being something that turned out to be the result of a different sort of brain. And how odd it is to type autism into search bars and find a whole load of other people who are the same as me, having spent my life with other people telling me that life wasn’t like this, it was like that, but for me it was like this, and apparently that’s because I’m autistic and it’s like this for other autistic people too. That’s really strange in so many ways.

And it’s all going to take a lot of working out, but I can start to do that properly now. The confirmation from the people I saw on Monday is a huge step to working it all out, partly because they UNDERSTOOD. They actually knew what I meant, and they made the assessment in a way that got the things that might cause problems and worked out how to deal with them before they happened. I’ll write it all up properly sometime, when my head’s processed it all.

And after a childhood working like crazy to try to fit in to the world, and a teenage accepting that I never would and taking refuge in music and study because they were the only things I really understood, and a quarter of a century of adulthood plagued by mental illness and the desire to be dead, some people finally got what it was and gave me an official label to explain why it had all been like that, and, when autism is added to bipolar disorder (that diagnosis still stands, as a comorbid condition), things make sense.

After so long living a life that didn’t work, to find people who believed what I said, and understood, and could finally officially say what was going on, was such a relief. And, interestingly, I even learnt a whole load more about another of my autistic traits, as it became obvious that there was something else I hadn’t even considered, that is clearly a result of autism (I’ll blog about it sometime, but not enough words now).

This assessment could not have been more different from the first. Totally different experience. To those who are out there still in the position I was in last week – keep going, keep asking, because there are people who can do it right and it is worth it.

I know that all my “problems” are not solved simply by being officially diagnosed. I know that there is a lot still to process. I know that there will still be dark times – being an autistic with bipolar disorder and anxiety probably means that my life will not ever be totally easy and smooth. I know that having a diagnosis isn’t some sort of magic spell that will cure everything, and that it’s a starting point for trying to work out how I can best function in the world and best live my life. But I now have that starting point, and it’s straight in my head, and I have the best chance now of official help or necessary adaptations or whatever.

Just a couple of weeks ago I wrote something on my phone (it was another started poem that never went anywhere) about my doubts, and how I wondered if I was just going mad. Going through a 5 hour assessment with people who clearly understood and knew what they were doing, and being told straight away that I clearly fulfilled the criteria for a diagnosis of Autism Spectrum Disorder (for that is its official title these days) has cleared those doubts.

The people will now write a report. I’m impatient to see it already, but my husband reminds me that I must be patient. Then they will give me a follow up appointment in about 4 weeks time, so I can gather questions and so on to ask them and they will point me in the right direction.

It’s the start of a new phase of life. I would be crying with happiness, but that point hasn’t yet been reached. Those sort of emotional reactions take quite a lot of days to happen for me, and the feelings are still buried under a whole load of surreality and slight dreamlikeness.

But it’s good. Properly good. Finally knowing me – officially.

One Day After…

72-2017-02-22-12-26-06Head closed
Like a shop
Stocktaking
Sorting.

Body wants pressure
Tight, reassuring
And movement
Repetitive.

It is like a dream
But real.

So much
Explained.
Life finally
Makes sense.

Trying to work out
The feelings.

Many of them.

Relief.
Belief.

Lots of things
I can’t yet identify.

Still seems
Extraordinary.
Me.
Autistic.

But they examined
And tested
And said
It is true.

Very very grateful
For validation
Acceptance
Respect.

None of this
Even heard of
A year ago.

But now
A new future
Ahead…

An Announcement

71-2017-02-10-13-58-01Today, after an appointment that lasted nearly 5 hours, and included extensive interviewing, some testing and observation of me, I sat and listened to a very very lovely woman say the words:

“It’s clear that you fulfil the criteria for a diagnosis of Autism Spectrum Disorder.”

I am officially diagnosed as autistic as of today. At this moment I feel a mixture of total relief and utter exhaustion.

My head needs to do a lot of processing now. But this is very very very good news.

I will return when I have more words.