Cataclysm

It 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.

Go Gently…

The 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

I’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

Last 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!

I’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…

Head 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

Today, 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.

Weekend Journal

Friday Evening

– The word “diagnosis” has become a trigger. Anxiety causing. I hear of others successful and I feel left behind, neglected, deserted. I am not part of it.
– If I had known from the start that it would be now I wouldn’t have gone through the stress earlier. The two failed assessments have caused damage and trauma and doubt.
– I begin to wonder if I’ve made all this up and I’m losing my mind. If it wasn’t spotted for so long then maybe it’s because it doesn’t exist and I have simply gone mad.
– Why why why why why is it so very hard. I fear so much that it will end badly. I’m trying to hope it won’t. My brain knows there is so much evidence, but I cannot believe.
– And still so much regret for my life and how much I hate it. Depressed, unemployed, childless. Useless to society. And the message for years that I needed to work harder. I am a wrong human. I should never have existed.
– Stress stress stress stress stress. I like my life to be basically predictable so I can prepare for it. And there is no prediction possible. The only evidence I have is that they will tell me they can’t diagnose me and I will return home suicidal once more, or that they will message and cancel. Because that is my experience of autism assessments.
– And if we get to the end and they say no, then what? Where does that leave my failed life? Without even a reason. Just failed.
– Why do I care what they say? Why not just self diagnose? Because I need the validation. Because I need black and white. I need proper. Confirmation. Stick to the rules.
– I am so very stressed and anxious. Alone tonight. Him working away. Head not cooperating to do anything interesting. Staring blankly at TV and Internet. In a moment I shall get wine and try to find that sweet point where I have drunk enough not to feel sick from anxiety but not so much that I start to feel drunk. Like I used to titrate whisky and pro plus in my 20s to get relaxed enough but stay awake.
– Am I really planning to put this on the Internet? Who cares about this stuff anyway? Maybe, just maybe, someone out there will read it and feel less alone. Possibly.
– Constant feeling of how unfair it is that I got to 45 before all this even arose. Envy of those in their 20s who have knowledge before they damage themselves as I did. Feeling that it is so much too late. At this age I should be starting to see rewards for hard work, but I did the work and didn’t get rewards. I feel sad and old.
– My entire identity is hanging in the balance. If they say no, then how can I go back? I can’t. It would kill me. There is no normal any more. I am living in limbo. An unknown state. Schrödinger’s autistic. I can hear the cat scratching in the fucking box but until the box is open it cannot be proven to be alive.
– Everything feels wrong wrong wrong at the moment. I hope it doesn’t feel like this for ever.

Saturday Morning

– In 48 hours I will be up before the firing squad. I mean, the inquisition, of course, or, as my brain keeps reminding me, the second autism assessment team. It feels more like a firing squad right now, and I’m wondering whether I’ll meltdown again and come home injured and suicidal like after the first assessment. I keep telling myself these are new people, in a new place. They have already been much clearer and more communicative than the others were. Maybe they’re actually good folk who want to help. But the memories of last time are strong.
– I feel like my life hangs in the balance. Which way will it go. Am I going to be sent away in uncertainty again? Told that I am too articulate or too complicated? Doubts doubts doubts. Am I just a fraud? After all, when I say I’m exhausted everyone says they’re tired too. When I say that I need time alone the chorus that responds says “We all need time alone!” So why are so many of them so capable? And I’m not. Or are they all pretending too? How do they do it? How do they keep jobs and raise kids and stuff? Maybe I am just lazy and useless. I don’t know. This stuff rattles round my head.
– Will I end up masking again? From the outside I look like a grown up woman, and I’ve been doing a reasonably passable impression of one for several decades. Since the assessment is so much based on evidence, they have to believe me, like the last lot didn’t. But people have consistently not believed me throughout life (see remarks about tired above). But why would I invent something like this? To cover up laziness? But I’m not lazy – I work myself as hard as possible at everything I do and I always have. My problem isn’t work, it’s knowing how to rest.
– Uncertainty is such a terrible thing in my mind. The not knowing. Held in limbo. Will this waiting be over in 50 hours’ time? Or will it just be starting all over again? My head doesn’t like it. It doesn’t like the not knowing. It doesn’t like the insecurity of it, the anxiety, the constant worry. Everything autism is now making me feel slightly sick, the pile of books, posts on Facebook. Just being myself. Because what if I’m just totally wrong about it all and they tell me it’s all in my imagination. Doubts doubts doubts. But there’s nothing else I’ve found, ever, that explains why my life has been so out of kilter with the world, and gone so wrong and felt so difficult and confusing. Nothing. If they have a better suggestion, I’d be willing to listen, but it would have to go a long way to explain everything in the way that autism does.

Saturday Evening

– Going to play Haydn was a good distraction. Enough friendly people. Totally overloaded by it. But did. And somewhat incredulated that I can sight read the viola part of the Creation without batting an eyelid but can’t work out how to get a cup of tea at the interval and also needed husband to buy coffee and remind me to take viola to gig. Hearing gone very sensitive as I got tired. But distraction.
– Identified conflict. Brain and research says how could they possibly not diagnose on Monday. But evidence from previous assessment and 20 years of mental health stuff says they won’t. Two lots of evidence. Conflict. Fight in my head. Need to know the actual thing. Everything feels so vague and I don’t need vague about this.
– After 2 hours under my weighted blanket I’m feeling massively much better than when I first got home. Much calmer. Still very very tired, but much better.

Sunday Late Morning

– In 24 hours’ time the assessment should be finished. Scary thought. Now just trying to distract myself with anything. Husband gone shopping for stuff we need. Had to have different flavour milkshake for breakfast today – took half an hour to get my head around it. Every time I don’t think I’m a “routine” person it turns out that I am more than I thought.
– Think about anything else. Because the anxiety gets too high. Way too high. Glad it’s not the first place though. Different place and people. Maybe better than before. Sure hope it isn’t worse.

Sunday Afternoon

– Dissociated. The world feels unreal. This happened before assessment 1 and assessment 2 too. Everything I do feels like going through the motions, like I’m not really there.
– Last meal of the condemned person. Fish, hash browns, cheese sauce. Tasted all very very strong. Taste sense gone hyper hyper sensitive. Hearing weird too. More weird than normal.
– This I know in my brain is the anxiety. The everything going strange and perceptions and senses all even more wrong than usual. The feeling of being apart from the world maybe some sort of protection mechanism.
– Suppose if I’m going to post this I should do it sometime. Can’t make much sense of it though. Head not focusing.

Tomorrow is another step into the unknown. I have not the faintest idea where things will be in 24 hours. Who knows.

Autism Fatigue

So much so much so much.
Overloaded with information.

Writing writing writing.
My head full of autistic traits.

Autism autism autism.
My timeline full of articles.

Debate debate debate.
Issues I cannot yet deal with.

Children children.
Where are the adults?
Or are we just not so cute?

Tests tests tests.
Early diagnosis.
Measured in months not decades.

Assessment assessment.
Flashing in my head.
Instilling fear.

My brain my brain my brain.
In so much turmoil.
Isolated and broken.

Wine wine wine.
There is nothing else.

My life my life my life.
Falling apart because I just can’t.

Stimming stimming stimming.
Weighted blankets and repetitive movements.

Autistic autistic autistic.
Well am I?

My whole identity
Unknown.

I want to scream
I want to know.
I am falling apart.
There is no help, just mess,
And waiting.

Everything is so new
And different.
When will I be me again?

I am trying to be a grown up
But I don’t feel like one.

(Except that I can persuade people
To sell me wine
Because I have grey hair).

Please can this be sorted soon.
Please.

***

Yesterday early evening was not a great time. I got very triggered by lots of things and my head didn’t do very well at them. Immersing oneself in autism stuff means getting exposed to some stuff that is really hard and difficult and it still feels so new that I haven’t had chance to work it all out yet. I have a lot of history to go over, and end up reading a lot of stuff that makes very bad feelings, both about my own history and about how younger autistic people are treated today. There is much still to work out and to make into words. And I got really stressed, mainly to do with having had so many decades of not knowing and now many months of still not being believed and now hour after tedious hour of waiting for next week’s appointment, desperately trying to hold life together when all I want to do is curl up in a corner and die.

After I wrote the above I wrote another similar thing, but much much darker. Whether I review it later or not, I don’t know. Maybe it’s too dark, or maybe it’ll be something to look back on and analyse in future. There are things in it that may be expanded to form future posts.

Anyway, the evening improved. My husband got home from work and let me know that he’d had a further e-mail from the assessment people saying that they’d received the most recent lot of writing I’d sent to them. They’ve now had, at a rough estimate, around 120 pages of evidence, going back to when I was a baby and covering my entire life. The e-mail suggested that they might actually be planning to read it, which the last place evidently didn’t (and they had much less because we’re now several months further down the line and when I can I keep writing, because, to be honest, in the absence of a therapist or any other way of sorting my thoughts, I don’t actually know what else to do. The e-mail was also clear and understandable, and seemed to suggest that the appointment will start on time and various other things that didn’t happen before, which would be good).

I then, rather rashly, agreed to go and play in a concert over the weekend. I was going to decline, but my husband pointed out that I was going to spend the whole weekend feeling stressed and sick and bad anyway, so I might as well feel stressed and sick and bad to a nice soundtrack. Maybe I can pretend things are old normal for a few hours if I can manage not to fall apart completely. It’ll totally exhaust me, but I’m totally exhausted anyway, so it probably doesn’t make that much difference. I got my viola out this morning to work out some fingering to suggest to a friend, then bashed through a concerto movement very badly, which felt reassuringly normal and not to do with autism.

Perhaps, by this time next week, the whole diagnostic nightmare will be over and I can start to rebuild some sort of normal but manageable life, and start to heal from this whole thing, and the little bits of hope that the burnout might be receding a bit will become bigger bits.

I do hope so. My head is worn out. This process is very wearing.

False Summits

When I was a child I did quite a lot of hill walking. In recent years I’ve taken to fell running. And, as anyone who walks or runs up hills or climbs mountains will know, one of the most disappointing and frustrating experiences is the moment when you trudge, exhausted, those last few steps to the top of the hill, but instead of being rewarded with a beautiful view and the moment of touching the triangulation point and knowing you’ve “got there”, all you can see ahead of you is another hill, seemingly bigger than the one you’ve already climbed. You know that if you want to reach the top then you’ll have to keep going, to carry on climbing, to drag your aching legs and burning lungs onwards, because otherwise you will descend, not with a sense of achievement, but with a sort of stale disappointment.

Once you know of the phenomenon of the false summit you can, to an extent, prepare for it. You can look at the contour lines on the map, you can make yourself aware that this is a multi-stage climb, you can take a sandwich or a little bite of something tasty as a reward for the smaller summits to encourage you towards the bigger ones. But the first few times you do a hill, when you haven’t remembered the map perfectly and it’s just a bit further than you think it will be, there is frequently that sense of disappointment as you have to dredge up yet more energy to go up that bit further and to keep climbing.

I googled “false summits” because I am wont to googling things. Google told me that false summits “can have significant effects on climber’s psychological state by inducing feelings of dashed hopes or even failure.” Google is correct, dashed hopes and failure were exactly what I felt after my first two autism assessments.

About a week after the failure of the first assessment I saw a cartoon, a bit like the one I’ve attempted to draw above, on an ultrarunning page. Obviously, it was meant there in the context of literally running up hills, something to which I can relate quite strongly these days. But, seeing the little person (who on the original was just falling off the crest of the first peak) with a new monumental task ahead of them resonated with me not only in a practical way but in a psychological way, as I was starting to realise that the process of obtaining a formal autism diagnosis was not going to be an easy one.

This is, of course, one of the reasons why self-diagnosis is widely accepted within most autistic communities – the process of getting a formal diagnosis is, for many people, very difficult and involves a great deal of stamina and perseverance, often at a time when a person is already compromised energy wise because the very process of discovering they are autistic has been triggered by some sort of crisis or burnout. Without my husband’s help I’m not sure how I’d have managed to get this far – it has been difficult and stressful in the extreme anyway, and how much more so it must be for those who don’t have someone absolutely 100% supporting them I cannot imagine.

So, as we approach assessment number three, I feel like I’m trying to trudge up the hill again, in the hope that eventually I shall reach the summit. I learnt from the first assessment that lots of forms, and lots of checking, and doing everything absolutely as well as I could was utterly useless in the face of someone who stopped the assessment because they said they couldn’t diagnose me. We were then promised that there would be someone available in January and the second assessment was booked – the promise of someone who could see me turned out to be a lie because there was no such person available and it felt like I arrived once more, with the triangulation point almost in sight, to be turned back because the path round that side of the hill had been eroded and slipped into the valley below. The stress of waiting for the second assessment and getting our hopes up once again was, of course, just enough to mean that the whole of the Christmas vacation time was spent stressed out and worried, which wasn’t great timing.

And so we’re trying again. I feel like my legs are exhausted. My lungs are shredded. I have eaten nearly all my sandwiches. My backpack is digging into my shoulders and I really really just want to get to the top now. I don’t know whether I will or not. I don’t know whether this is another false summit I see ahead of me. I don’t know whether, by the end of next week, I will still be trudging up this particular hill in all weathers, still trying to get to the top, or whether I’ll be standing on the top, the sun will come out and I’ll be surrounded by beautiful views.

Uncertainty all round. I see the hill in front of me, but I don’t know whether it’s really the top yet. My mind is struggling to focus on much else at the moment, but thinking of analogies to describe it all helps somewhat. I dissociated quite a lot before the first two assessments, once the anxiety had reached a stage where my brain simply cut out. Maybe it’ll be the same this time. At least I’m prepared for it now.

And if it turns out to be yet another false summit or the path is broken again then I might well end up, as I did after the second summit, coming back down the hill for fresh supplies of sandwiches (another referral to another centre and a repeat of the whole formageddon experience). Another return to base camp for supplies, another failed attempt, another lot of energy needed.

Getting an autism diagnosis is like some sort of crazy psychological endurance sport!

Can you tell the anxiety levels are rising fast?

False summits…

The last sandwich…

Forms and evidence…

Uncertainty pervading…

The future, just a question mark, at what might or might not genuinely be the top of the mountain…