Talking About It

I described, in Strategy Deployment, how I had dinner in College a few nights ago. The routines and protocols of such dinners are generally well-known to me, and one of those routines is a loose convention that you tend to chat to one of your neighbours during the first course of dinner and another during the second. It’s not a hard and fast “rule”, and who you actually end up chatting to depends a bit upon circumstances, but you can reasonably expect to talk to at least two people during the course of the meal.

On one side of me I had my best friend, who knows everything about what’s been going on in my life over the last eight months. He and I chatted, initially, across the table (we were on a corner) to his other neighbour. My main memory of that conversation was that we discussed the renovation of a pianola, owned by this other person – for me a nice, easy, safe topic of conversation, music and mechanics combined. No problem!

On my other side was another person I know reasonably well, a former tutor of mine from nearly 30 years ago, who I last saw at a dinner in 2013. As the main course arrived, he turned to me and first apologised for ignoring me during the starter (he’d been catching up with his other neighbour), as appropriate, and then he asked me, predictably, what I was doing these days.

There had already been a slight mention of the fact that we’d sat right on the end of the table, in the corner, when we first sat down. My best friend had explained that “there was a reason” we’d chosen those particular seats, and the fact that I was wearing dark glasses gave another clue that things were not “entirely regular”.

So, at the moment the question about “what I was doing these days” was asked, I had a choice. I could either (a) try my hardest to come up with some sort of conversation that made some sort of sense and would be adequate for the occasion, (b) ramble on a bit about “life being interesting” and “a few sensory issues” (to explain the dark glasses), or (c) just give the whole “I just got diagnosed autistic” speech!

A couple of months ago, when I went Out to Dinner, I was pre-diagnosis, and just being out of the flat at any social occasion at all was a huge thing for me. That evening, there were a couple of people there who knew what was going on in my life (one was my best friend, and another is friends on facebook and reads some of these blog posts), but a third friend didn’t know, and, two months ago I wasn’t ready to tell him, in person, by speaking. On that occasion I opted for option (b) and then e-mailed him after the event, sending him the link to this blog to explain more fully.

A month later, just before diagnosis, I was at an orchestra rehearsal, and wanted to explain to another non-facebook friend, what was going on. I managed, just, to get the words out, but was shaking and terrified, even though I knew that she was the sort of person who would be absolutely understanding and, like everyone I’ve so far told, she reacted by saying “Yes, of COURSE, that makes so much sense.” However, being able to articulate, in words, out in the big wide world, to other people who didn’t already know, that I was autistic, was still, at that point, seriously difficult.

Those of you who have been reading this blog since its inception must be wondering how this can possibly be. I’ve now been writing about being autistic, in as much detail as I can persuade my head to produce, for months. Yet just one month ago I could hardly form the spoken words to describe what was going on and two months ago I couldn’t do it at all. Of course, what might or might not have been evident from the early posts of this blog was the absolute fear when I posted The Discovery as to how my news might be received, especially as I was taking a huge gamble by disclosing after the disaster of my first assessment, as described in Too Articulate and Too Complicated. At that point I decided to disclose anyway since I couldn’t work out how to carry on living without doing so, and I got to the point where I’d decided that the risk of losing what remaining social life I had was probably worth taking in order to stop the feelings of no longer wanting to exist. But it wasn’t easy.

However, the blog moved on, the response has actually been amazing, and I’m now typing stuff about being autistic into one of my various devices on pretty much a daily basis.

But I still hadn’t reached the point where I could TALK about it to people who didn’t already know by reading the blog – at least not without almost falling apart on the spot and wishing the ground would swallow me up there and then and never spit me out ever again.

So, now returning to the point at which my former tutor turned to me and asked me “what I was doing these days”, what did I do?

I started with a couple of sentences reminding him that there was a “reason” I was sitting on this side of the table, I mentioned the dark glasses, and then I finally got to the point where I went for option (c) on my list above.

I’m certain I talked too much, and probably didn’t obey the proper rules of back and forth conversation. I also couldn’t quite multitask and eat my dinner at the same time. And my “I’m recently diagnosed autistic and this is how it came about and so on and so on and so on…” script is still very much in its embryonic stage (part of what I’m doing when I write these blog posts is teaching myself how to talk about it, part of what I’m doing when I read other blog posts and articles and books is giving myself the vocabulary to be able to talk about it, and starting to form my own ideas and where I fit in to the autistic world and how being autistic affects my life).

But, for the first time, I told someone who didn’t already know, and managed to do it without falling to pieces and shaking so much that I nearly dropped my drink, or starting to feel my speech fragment, and was able to have some discussion about it.

Admittedly, for me, dinner in College, at a place that has now been familiar to me for the best part of 30 years, feels like a safe environment. I’m lucky to be able to return to the social world, gently, in such a place, following familiar routines, and knowing that the people around me are likely to be sympathetic, and, on the whole, interested. So it was a good place to start.

However, I think the other thing that really helped was the confidence I have gained since I was formally diagnosed. I don’t think I could have had that conversation at this stage without that extra confidence.

But, whatever the circumstances, and whatever the reasons, it was the first time that I had been able to sensibly discuss being autistic with someone who didn’t already know. It was the beginning of being able to talk about it to other people – actual talking, not typing on a blog post, which is very different. I have known since the “autism hypothesis” formed, right back in August 2016, that if the hypothesis turned out to be true then I would need to find ways of talking about it, and I would need to construct scripts and work out how to explain to people (maybe, even in the fullness of time, be able to educate and inform and advocate, who knows). I’m not fully there yet, but I’m a huge step nearer than I was this time last week!

Weekend Journal

70-2017-01-05-13-35-59Friday 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

69-2016-12-17-15-46-58So 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

68-2017-02-16-11-56-27When 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…

Out of Routine

66-2017-01-28-14-04-07If you asked me whether I was the sort of person who was absolutely fixed on routines and set ways of doing things, I’d probably say that I wasn’t. I’d probably say that I thought I was very flexible and adaptable.

If you asked my husband the same question about me, he’d probably give you a totally different answer. And, as usual, he’d be right.

I’m just coming to the end of 4 days that have all been different from “normal” and all different from each other. And I am knackered. Utterly knackered. I feel unsettled, edgy, and totally exhausted. I really really really want a “normal” day tomorrow.

The routine break started on Friday afternoon when I went over to visit my best friend. We spent a pleasant evening together and I stayed overnight (his wife was away, and when she’s away it’s reassuring for someone to be there just in case any help is needed, so I sometimes provide an elderlysitting service). We had a pleasant evening, but by my current standards there was a lot of conversation, and my sentences started to fragment by the end of the evening.

By Saturday morning forming words was really hard work. I tried to explain to my friend that it was a bit like attempting to converse in, say, Hungarian. My attempts to say “Hungarian” didn’t end well – in fact, they didn’t end at all, because I simply couldn’t say that many syllables at one go by that stage. I typed on my phone to explain that I was going to go home, and he got his magnifying glass out to read the typing – attempts to communicate almost descending into farce!

I then came home and completely lost all ability to speak for about 3 hours, then fell fast asleep.

My husband went off to work on Saturday night, so I recovered a little overnight and on Sunday morning, then spent Sunday afternoon and evening trying to finish a maths assignment – I’m still clinging on to the idea that I might just salvage my Open University degree, though it’s still not certain that I will. But I eventually got around 80% of the assignment done, ready to submit. The willpower required was huge, absolutely massive.

This morning was an early start, to take the car in for its M.O.T. test. It was not a good early start. I felt sick and stressed, exhausted from the weekend, and worried about having to leave my phone on all day and discuss car things. And added to the stress was sadness, as my husband found my lovely little Robo hamster, Stim, had died in his nest. There are feelings about that that I’m not really processing because there isn’t headspace and I have to do practical things.

When I went to set off to take the car, my scarf was missing, which nearly sent me into a tailspin – it turns out I left it at my friend’s house – so I had to find another one.

Then things started to improve a bit.

Driving is actually, still, something I find OK. By myself in the car, my own space. I can cope with it most of the time. The people at the garage know me, and are good and efficient and got to work on my car while providing me with a courtesy car.

I still hadn’t had anything to eat, and thanks to the lightness of the traffic and the efficiency of the garage, it was early. I decided to chance a coffee at my usual coffee shop, which I’ve largely avoided since discovering I was autistic, mainly because some of the people who work there know me well enough to chat to me and make the sort of small talk that I find difficult. Ironically, at the moment, I feel more comfortable either with people who know the full story and the whole autistic thing about me, OR people who are total strangers and have nothing to compare the “me” of now with because they didn’t know the “me” of the past. Becoming my autistic self has been really easy from the inside – all I have to do is stop acting and be myself. But the interface with the outside world is very much still a work in progress.

Anyway, thanks to the fast turn over of staff in coffee shops, both baristas were total strangers, which made life much easier, so I had my usual latte and cheesecake (and a croissant, which I was nearly unable to eat, but managed in the end). I’m trying to eat as much as possible, because I’m conscious that my eating ability might well deteriorate further as the forthcoming assessment approaches.

I then managed to do one job at the bank and top up my phone, before attempting to buy a couple of things at the supermarket.

The supermarket proved too much. I felt sick and dizzy and my head started to throb, the lights obviously way too much for my already taxed system. I located the courtesy car in the car park and drove straight home.

My husband had managed to scan my maths assignment for me so I could submit it electronically, so I logged on and sent it, just managing to stick to the extended extended extended, specially extended again, deadline.

I then rocked on the sofa until I fell asleep.

The garage called early afternoon. The really good news was that the car had passed its M.O.T. test. Which was excellent as much because I simply couldn’t cope with the interaction of dealing with sorting cars out beyond the basics at the moment. Last year it needed so much work done that they handed it back and said it was practically a “new car” because so much had needed replacing, so maybe I was due a good year.

I collected it, then finally did manage to do a little shopping for some of the heavier and bulkier items so that my husband doesn’t have to carry them all on the bus.

Then came home and collapsed.

I feel wrung out, worn out, completely exhausted by the whole thing. This is probably a terribly dull blog post, an account of dull domesticity, but it has provided me with a way of getting some of the thoughts that were in my head organised and sorted so I can use the space for moving on to the next things I have to do.

I’m now counting down the days to the assessment. I want to send more material to the assessors. There is so much, and I don’t want to miss anything. I still fear they will not believe me, because all available evidence suggests that they won’t. And there is that voice always in my head, that every time I write about difficulties talking, or going shopping, or wearing scratchy clothes, or whatever, always, there is someone who says “Yes, I have difficulties talking/shopping/wearing scratchy clothes” (or whatever it is). And so the reinforcement that everyone has the difficulties I have and that I am just normal but bad and fussy and lazy, continues.

And since I’ve already had 2 failed assessments I am now starting to doubt myself again.

And I wonder what will happen if they say no. Will it be the end of the road?

If I am not autistic, then why do I keep losing speech? Why do I have these times where I can’t work out how to put my socks on?

Like has happened throughout my life.

Maybe I SHOULD go for a brain scan? The woman at the first assessment started talking about brain injury – did I have some big accident and I’m so screwed up by it that I’ve forgotten it completely?

Doubts doubts doubts, all the time. If the psychologist before couldn’t see it, and years of psychiatrists couldn’t see it, then why will it be any different this time?

I begin to think I am losing the plot…

Or maybe I’m just feeling completely despairing and totally all over the place because I’ve had so much on and been so out of routine and had so little time alone.

I did manage to write a little “poem thing” (I’m still not sure if they’re really poems) over the weekend, but I didn’t have enough energy to post it, so here it is now:

I stayed…

…overnight with my best friend.

Lovely evening.
Takeaway curry.
Chatting.
Discussing.

In the gloom, for me,
Even though his eyesight
Struggling.

He made the call for takeaway
Even though he’s not fond
Of the phone.

Me rocking, stimming,
All strategies
Throughout the evening.

I slept
Moderately well.

I woke
Tired and quiet.

My words
Not fluent at all.

I departed
To get home.

I arrived
Quiet and tired.

My words
Completely gone
For three hours.

***

I could have gone out for breakfast.
I could have stayed for coffee.
I could have collected my stuff from our mailbox.

Except that I couldn’t.

Typing my words on my phone
To my friend who needed a magnifying glass to view them.

Aware that I needed to drive
And wanting to be home before complete shutdown.

***

This is the hard stuff.

Missed opportunities.

Truncated life.

I don’t much care whether I can speak
Technology deals with that.

But I do care
That I have to miss breakfast
At a nice place

Because I can’t cope.

And I do care
That I have to come home
Instead of living
A full life.

Build-up (Again)

64-2017-02-09-15-17-05

 

As the next assessment looms
I am edgy, tense, anxious.

Yet again, the maelstrom
Swirls in my head.

I am trying to concentrate
On mathematics

But it is very difficult.

(The concentration, not the mathematics)

 

As the next assessment looms
I am trying to prepare

Yet again, my mind
Is full of autism.

I am trying to work out
How to stop it going wrong

Like last time.

(I never want to go through that again)

 

As the next assessment looms
I am filled with doubts.

Yet again, huge worries
Are filling my life.

I am trying not to obsess
And to live normally

Whatever normal even is.

(Old normal gone and new not yet formed)

 

As the next assessment looms
I am hopeful and despairing.

Yet again, the uncertainty
Screwing with my mind.

I am trying to think of this
As just another step in the process

But I really want an ending,

An answer,

A diagnosis.

(Then I can move on with my life)

Career Snake!

63-2017-01-02-18-20-57The statistics are, it seems, pretty grim. I haven’t verified the numbers, neither can I give you any details about how many of those considered are formally diagnosed or anything, but I continually see figures indicating that only around 16% of autistic adults are in full-time employment and 32% in any form of employment at all. Even if we allow for quite a lot of error in those figures and consider that there might be people who are unfindable by official statistics compilers, it would still turn out that the proportion of autistic adults sustaining employment is pretty low, and that many of those who do have jobs are working well below their capabilities skillswise owing to the social, sensory, and organisational demands of most jobs.

I have been sliding down the career snake all my life. Despite my issues at primary school and continual bullying through secondary school, I did manage to get quite a good bunch of qualifications, as I mentioned in Expectations Gone. Admittedly, I dropped out of my first degree course, having entirely failed to do what was expected of me or to settle into any sort of proper work routine, but I did manage to succeed second time round and graduated with a good degree. Had you known me in my late teens and early 20s and looked at my qualifications you’d have predicted a bright future for me as far as employment was concerned. The Strong Woman mask also projected an air of confidence that would have added to this impression and it looked, back then, as though I was headed for great things – all I needed to do was put in the work and everything would be fabulous!

However, it was not to be. I did put in the work, lots and lots and lots of it. I based my ambitions on trying to find a career I loved that was compatible with the qualifications I had, and I worked and worked and worked at it. When obstacles were put in my way (I didn’t receive funding to do my master’s degree) I did everything I could to overcome them (got a job to fund myself through and took out a loan to pay the fees). I went without food and heating to save money in order to carry on studying to become an academic because that was the career I really wanted, and I worked until I could work no more.

I had fallen into the trap of believing the idea, still perpetuated today by some of these awful “life improvement” memes, that if you wanted something badly enough and you worked hard enough for it, you would get it.

That is, of course, a fallacy. You are unlikely to achieve your goals if you DON’T work for them, true, but you can’t reverse that statement and say that working for them means you WILL achieve them. It’s simply wrong.

But back then I believed that working hard was the solution. So I did. And by the time my ill-fated DPhil degree studies started to fail I was almost at snapping point with anxiety, financially in trouble, drinking heavily, and dissociating regularly. I didn’t know then that what I was experiencing was dissociation, but I do now. It was with considerable sadness and regret that I abandoned my studies, and with them my dreams, and decided that I simply couldn’t manage to achieve what I’d so badly wanted.

At that point I had no idea that I was even mentally ill, although I evidently was, very. I had no way of asking for help because I didn’t know what sort of help I might need. I had no concept that I had impaired executive functioning and organizing my life and trying to take care of myself while studying almost unsupported and while chronically short of money was simply beyond my abilities. I had the exam results and I believed, therefore, that the only reason I was failing was that I wasn’t putting in the work. It was the only reason I could think of.

A year later, armed with my original degree, I enrolled on a PGCE course. If I wasn’t going to be able to do research and teach undergraduates then I would modify the plan and teach schoolchildren instead. I turned out to be a pretty good teacher. I did well on the PGCE course and got my first job easily (my qualifications were somewhat over the minimum requirements, and my ability to teach “shortage” subjects proved useful). I started my new career, confident that this time all would be well.

Less than three months into the job, all was not well. There was definitely something very wrong with me. I was struggling. I went to my head of department and told him that things weren’t right. He told me that people as clever as me didn’t have problems and I’d be fine. I upped my work level to try to compensate for the things that were going wrong. It didn’t help. I went back to school after the Christmas holiday period and by February I went in search of a doctor because I felt so ill. I got to the surgery and collapsed onto the floor, hardly able to speak. The doctor picked me up and let me recover and I was then signed off work with “debility”. Nobody could really work out what was wrong with me, but I was clearly very unwell. The “debility” label was changed to “anxiety and depression” shortly afterwards and I entered the world of the mentally ill.

I decided that maybe that school had been too unsupportive for me and got another job in a very different school. I did slightly better for a while, but while there my mood started to become chaotic and elevated, and I went into a hypomanic phase (again, not known at the time, but obvious with hindsight). I was also still unable to survive financially – my starting salary was insufficient to cover the rent on my London flat and to service the massive debts I’d incurred while studying. So I applied for a promotion to Head of Department in another school, and got it!

Only a few weeks into the new job I had the breakdown that is now known as “the big one”. It is now evident that I was also in a period of huge autistic burnout. I made my first serious suicide attempts that autumn. My health was destroyed. I never fully recovered from that time, and the slide down the career snake accelerated massively. My days as a high flyer were over and it became a matter of “damage limitation”.

After I’d recovered sufficiently to rejoin the world, helped by my newly acquired husband, I did a bit of supply teaching, and got a part-time job for a while, but I wasn’t really up to it any more. I then had a succession of office jobs – administrator, data entry clerk, personal assistant, and eventually part-time administrative assistant in a small office. All of these jobs I found hugely exhausting and very very difficult. I would be struggling to drive home after a few hours at a part-time job, my eyes almost closing at the wheel. It didn’t matter how early I went to bed or how much exercise I took or how well I ate. I was just knackered. All the time. I finally went off sick from the last job, having, by this time, received a diagnosis of bipolar II disorder, and at the last meeting I had with my boss, the person from occupational health, and the personnel officer for the job, I was almost completely unable to speak. I had come to the end of my office work abilities.

Having failed as an academic, a schoolteacher, and an administrator, I had one last attempt at earning money for myself before succumbing to another cycle of hypomania and depression and breakdown. I answered an advertisement in the local newsagent from a woman who needed a cleaner one day a week. In some ways it was quite a good job. Although the pay was poor and I worked 5 hours without a break, I was often on my own, and I was quite good at it. It was hard physical work as I was expected to do the whole house, change beds, completely clean several bathrooms, and leave everything pretty much immaculate, often after the family had evidently spent a weekend partying. Eventually, however, 5 stone overweight from the quetiapine I was taking, my back and hip gave out under the pressure, sacroiliac pain radiating throughout my body, leaving me unable to walk, let alone clean an entire house in 5 hours. The woman also gave up work temporarily to have another child and I found myself having to cope with people around me and the new baby while I was working and it really wasn’t worth the pain and the triggering effect of the children in order to earn somewhere around what was minimum wage at the time.

By then I had a psychiatrist and a community psychiatric nurse. Both helped me back to some semblance of a life, and I gave up the idea of working completely because it was obvious by then that I wasn’t well enough. I recovered enough to do a part-time language teaching course, but the experience of the course left me needing months to recover. I started studying mathematics with the Open University in order to try to do something with my brain and, rather ambitiously, against all medical advice, did some supply maths teaching in a local secondary school. On the morning of my third day in the job I sat in the school car park in tears of utter exhaustion, knowing that it wasn’t going to work. I loved the job, I wanted to do it. I wanted to be out in the world, teaching, being part of something. But I just couldn’t. Every time I tried I just fell apart and felt so horribly horribly ill the whole time.

I have not worked since I left that job 6 years ago. For nearly a quarter of a century, while many of my peers were climbing some pretty impressive career ladders and becoming academics, businesspeople, scientists, professional musicians, headteachers, top administrators, and so on, I was sliding down my career snake. And no matter how hard I tried to climb back up the snake, the gravity was too strong. And every time I grabbed at a rung of an adjacent ladder, the rung broke and I slid yet further down the snake, before eventually falling off the bottom of its tail, onto the floor.

And it didn’t ever quite make sense why this kept happening, why I couldn’t keep the jobs. It didn’t add up that someone with my qualifications and evident abilities and absolute fierce ambition and desire to work and preparedness to graft and to put the effort in, couldn’t keep even the simplest of jobs. There seemed to be no reason why things just kept going wrong, time after time after time.

Even bipolar disorder didn’t explain it. My bipolar disorder is cyclic. I have hypomanic episodes every few years which lead to crashes into depression. Between those times I am usually stable, moodwise. I have also taken effective medication and developed strategies to help with managing my mood. The treatments and therapies I received for bipolar disorder did, in general, work for bipolar disorder.

But even in the stable times I was still getting sick, and sick in a different way, not a mood way, but an utter exhaustion and unable to cope and having to go off and be silent on my own sort of a way. In a way that has been a mystery for years.

Until I discovered I was autistic. And suddenly those things make sense. And all the failed careers and the lost jobs and eventual unemployment have an obvious cause. Throwing myself constantly into such busy overstimulating environments for years and years has, quite literally, broken me, over and over again. I never had a hope of doing most of those jobs – not because I’m lacking qualifications or not making the effort, but because I am simply unable to cope for extended periods of time in environments that are so hostile to me.