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.

Uncertainty and Fear

57-2017-02-01-17-28-33I finished the forms. I spent all of yesterday’s energy on them. And today I feel sick and exhausted. But that was to be expected. I’m also really stressed that all the things I was planning to try to do this week haven’t happened. But I can’t do anything about it at this stage. Every time I just feel like I might be getting things back on track I run out of time and energy again.

We have returned the forms and my second referral has gone through. My husband had an e-mail from the assessment centre today and we now have a date for my third assessment – it is in a few weeks’ time, at the end of February. It was quite a detailed and helpful e-mail, although my name was written with the wrong spelling throughout.

So now we start the wait again. The e-mail did speak of assessing whether I just had a few traits, and might be not enough for a diagnosis, and it would be unknown whether they would tell me on the day. And all sorts of other unsettling things. All sorts of unknowns and uncertainties.

And so the uncertainties are once again raging through my own head. Am I imagining all this? Will I once again be sent away with no answers and no help? Will I “fail” the test? And if I do, can we even contemplate the energy to do it again or will we simply give up? And if we give up, then I just have to try and live whatever years of this life I have left as best I can, and the whole autism business will join the whole childlessness business as one of the great unknowns, but the nightmare ended not by the menopause but by my death.

As time goes by I’m now getting less and less confident about the whole thing again. Life has always been like it is. I have struggled for years with it and nobody has ever officially given me an answer that makes sense of it all. I’m not that confident that they will now, given how badly the first assessment went and how they just cancelled the second one (see part B of the Blog Guide for the full story).

When I got the date for the first assessment I was nervous, yes, but I was also excited that it might be the biggest day of my life and the day that provided the answer as to why my life has gone so badly wrong in so many ways for so many decades.

Now I have the date for the third assessment, there isn’t excitement. I’m just scared. Scared that it’ll be as bad as the first, and that I’ll yet again be not believed, and that I’ll be sent away and there’ll be no closure and we’ll just have to stay alive and carry on alone somehow. I feel that this process should have happened years ago, maybe when I was a child with a parent to look after me, or in my early adulthood, before I was middle-aged and exhausted by everything, before I went through two major burnouts, back when there was still hope of building a life, maybe even of being supported enough to survive in the workplace and not ending up as useless as I’ve now become.

But at least the next assessment is in a different place, with a different person. With any luck I won’t ever have to go back to the first hospital ever again, which would be good.

This is another of those “therapy/journal” blog posts. This process is very hard, with many ups and downs, and in the absence of any sort of therapist, some of the downs will inevitably find their way here.

The irony being that getting another appointment, in only a few weeks’ time, from the second referral centre (meaning I don’t have to go back to the hospital), is actually a really big and positive step forward, and my brain knows this. My brain also knows that they can’t possibly tell me what the outcome of the assessment will be until they’ve done the assessment (otherwise there would be no point to autism assessments and diagnoses if they just diagnosed everyone), so of course it’s a whole load of uncertainty, but that doesn’t make it any easier.

Because the fear of it all going wrong again is still there.

Being Me

50-2017-01-11-20-01-03Life is quite hard at the moment.
Not easy to work out.
Not easy to keep on track.
Not easy to feel OK.

But it feels much more right.
Much less pressure to be normal.
Much less pressure to achieve.
Much less pressure to act.

I finally figured it out.
I do not feel life like most.
I do not need to fit in or chat.
I do not have to suppress stimming.

Although it is so tough I am happy.
Happy to be autistic.
Happy to be non-binary.
Happy to be me.

Because whatever the difficulties.
Whatever the problems.
Whatever the world thinks.
Whatever the strategies
Needed to survive…

The relief at being myself
Is huge.

Massive.

Like a giant elephant…
Or a blue whale…

Or one of those amazing Sequoia trees…

An Achievement

47-2017-01-22-11-23-13This morning I went running. For the first time this year. The first time since early November. I only did 2 kilometres, at a pace of 7:15 per kilometre. Neither long nor fast. Under normal circumstances I’d hardly consider such a run worth putting my shoes on for – I’m an ultrarunner and I like to be out there for a long time. My usual idea of a “short run” is anything up to half marathon distance or so. My usual idea of a “long run” is one that takes a whole day and involves backpacks and nutrition and so on – maybe the “autistic intertia” that makes starting and stopping activities so difficult is actually an asset in ultrarunning?

However, during the last few months I’ve been so burnt out, so stressed, so frightened to leave the flat most of the time, that running simply hasn’t happened. Just the effort of putting kit on has been completely beyond me, and I’ve looked, slightly sadly, from time to time, at my pile of much-loved running shoes in the hallway, desperately hoping that I’ll be well enough to put them on again one day.

Running is one of the things that might, in autistic terms, be described as one of my “special interests”. I’ll discuss the whole concept of “obsessions”, “special interests” or whatever they’re called at some point – I tend just to think of mine as things I like, but I do recognize that when I like something enough to bother with it at all, I really do bother with it. The first day I put a pair of running shoes on and moved slightly faster than walking pace for one painful minute, I began a journey that would lead me to a 100 kilometre ultramarathon just 9 months later. I read the magazines, I’m obsessed with the kit, the nutrition, and so on. I have a steadily growing pile of books about running, and I love following online trackers of races and feats of endurance running whenever they’re available.

This last few months though, I’ve had to sit and watch as others actually did the running. I simply couldn’t manage it. Over the autumn I pulled out of two halves and four marathons, all of which I really wanted to do. I’ve realised that races are going to need some strategies to cope with – it has become obvious that when other runners chat to me it severely impairs my running performance, even people cheering me on uses language-processing power that means I have less energy available for the actual running. I absolutely hate having my name on a race vest – it freaks me out when random people suddenly shout my name – it is not encouraging for me, it is spooky and weird.

I have also always resisted joining a running club. People tell me the camaraderie is wonderful, and that the beers in the pub afterwards are lovely. But, to be honest, I’d rather give up running than have to join a club – I want to do running for running’s sake and one of the reasons it works for me as a way of getting fit is that I can do the actual running completely on my own. I like the quiet, the repetitive action of one foot in front of the other, over and over and over again, the same thing, lost in my own world. The minute someone talks to me that spell is broken and I am dragged back into a world where I have to work out other people and what they want and why they have spoken to me and what they are hoping to get out of this conversation. I’ve even been asked during races “What do you do?” WHY? Why, when I’m 20 miles into a marathon, would a total stranger ask me a difficult and complicated question that would take nearly all my resources to answer if I was sitting down and had a lot of breath and time to think about it? I don’t understand.

I do all my training alone. Even when my husband and I train “together” what we actually do is get changed into kit, tell each other approximately where we’re going to go and how far and what time we expect to be back, and then arrange to meet back at the car or wherever. The only times we have actually run together (once during a race that was going wrong when he was trying to protect me from people talking to me, and occasionally for safety reasons in rough conditions) we do not chat. We just run. That’s the beauty of running for me – it’s a solitary sport, something I control myself, which rarely involves other people or communication, a far cry from the bullying and dread that is my abiding memory of having to play team sports at school. I used to enjoy swimming until the sensory overload and proximity to other people in swimming pools made it unbearable.

But I enjoy races. I like to see what’s going on. I love looking at other people’s shoes and kit and so on, I like to see the ways races are organised, I like the welcoming sight of the next aid station and the excitement of seeing what goodies they might have available (sitting eating porridge and lemon tarts and drinking soup after nearly 24 hours out on a trail, cold and wet with a busted leg, is a special and wonderful thing). I like having a goal to aim for, a medal to put round my neck saying “I achieved something that I never thought I would”, and I like to make training plans and work out which days I’m going to devote to a long run and which foods I’m going to try to carry and pushing my body to its absolute limit.

I could give up races and confine myself to training or “virtual” races, but that isn’t my aim. I’m going to have to get fitter in order to compensate for the people – where many folk find the race “atmosphere” enhances their performance, it impairs mine, so I’m going to have to train harder. I have a marathon booked for the start of April (along with a very expensive hotel room). I’m now wondering whether I might actually be able to do it. I certainly haven’t given up. I was also planning my first 100 mile race in May, which probably looks unlikely at this stage – although there is an option to drop down to the 24 hour challenge, which might be a possibility. I’m keeping my options open for the moment.

One thing is certain. My obsession with running has not abated during my enforced rest period. In fact, I’ve become somewhat interested in historical sprinting while sitting in front of the TV with the DVD of Chariots of Fire on repeat for the last month. I’m now reading avidly almost everything I can lay my eyes on about Harold Abrahams, Eric Liddell, and the 1924 Paris Olympics, finding out the real stories behind the film, my head filling with little snippets of knowledge, which I won’t start listing here because I haven’t finished the process yet and it would already be more than a blog post’s worth!

The only books I have read in the last few months that haven’t been about autism (or science/maths text books for “work” type reasons) have been running books – not only those about historical figures, but contemporary tales of marathons and trail running. I’ve struggled to read much at all because my concentration is so poor, but, aside from the autism section of my personal library, running books are the others that have made it to the top of the pile.

But this morning I actually managed to run again. I woke up feeling as though I could, and having spent several days thinking about it, I decided to see whether I could actually do it. The hardest parts were, as they usually are, getting out of the flat in the first place, and then returning to the flat at the end. We share a communal staircase with everyone in the block, and we both live in utter terror of meeting a neighbour on the stairs and having to chat about something unexpected. Going out is actually better than getting home because we can hear people in the corridor outside so we simply hide behind the front door and wait for them to go, but the possibility of getting into the block and being nearly home but then bumping into someone is an anxiety we live with every time we get home from anywhere – the relief and ability to breathe properly again when we finally close and lock the door behind us is massive.

The run itself was lovely. I was pleasantly surprised that I haven’t lost as much fitness as I might have imagined – maybe up to two hours a day rocking hard on the sofa and bashing myself violently against a cushion has been good cross training? One of the things that has also been better about this episode of burnout / mental illness than during previous episodes is that I went into it very physically fit. Previously I’ve not only been mentally very low, but I’ve also been very overweight (I used to be a person who struggled to climb stairs, even lifting my legs with my arms to go up steps at one stage) and extremely unfit and incapable of walking any distance at all. The physical fitness has helped no end – running has turned out to be a very good “special interest” to have acquired.

And this morning I finally started to increase my fitness again, just a tiny bit. I can’t imagine this will be a totally smooth ascent – I’m not pushing anything hard at the moment because I know that the only real cures for burnout are solitude and rest, but now I’ve been out once, remembered I can do it, and been through the familiar routine of putting kit on and so on, maybe it’ll be a little bit easier next time. And although I’ll never be a sprinter at the 1924 Olympics, I might manage to get good enough to run again in one of my favourite marathons in one of my favourite cities in April.

A very special friend of mine in a distant and beautiful part of the world wrote one of the books I am currently reading. It is called “Run Gently Out There”.

That is exactly what I hope to keep doing.

Various Feelings

06-2016-12-09-15-28-38Relieved. So relieved it wasn’t my fault.
How different I was.
The times I failed.
The things I couldn’t do.
I’m just wired differently.
I always was.

Angry. So angry that it took so long to find out.
That nobody knew.
Expectations so high
I could never fulfil them.
Naughty and lazy.
That’s what I thought.

Contented. So contented to have discovered.
Found the real me.
At long long last.
Finally allowing myself
A more gentle life.
Recovery time.

Sad. So sad for the lost years of my youth.
Pretending, wasting energy.
Having to start over
Middle aged and tired.
Rebuilding
A shattered life.

Hopeful. So full of hope for a new life.
New strategies and plans.
Learning what works.
Better for me.
Being myself.
Finally relaxing.

Broken. So very very broken.
Always was.
Always will be.
Ambitions shattered.
Permanent.
Impaired.

Excited. So excited by the information.
Others are like me.
A new interest.
Obsessive learning.
Books and articles.
My life explained.

Scared. So scared by the newness of it all.
Going to get it wrong at first.
So much information.
New words and sensitivities.
Needing to explain
But I hardly understand.

Stimmy. So stimmy as soon as I allowed it.
The release as I give up on stillness.
Allowed to fidget.
Fiddle, chew, flap, rock.
Bash, jump, rub, sway.
Instinctive. Natural. Beautiful.

Frustrated. So frustrated with waiting.
For official recognition.
For any help at all.
For someone to see
What is obviously true
And to believe me.

Grateful. So grateful for a wonderful spouse.
Supportive through dark times.
Caring, and loving the new me.
Equally fascinated and obviously
Also wired like I am.
Our marriage explained.

Shocked. So shocked that this is the reality of my life.
Totally unexpected.
Just how many things.
Mind blown
By the massive revelations
About myself.

Calm. So calm for the first time ever.
I hadn’t realised
The world was so tough for me.
But now I do I can retreat
When I need
Into my own safe place.

Damaged. So damaged by the difficulties.
But nobody knew, not even me.
Trauma internalised.
Mental illness.
Will take time
To sort it all out.

Optimistic. So optimistic for the future.
Recovery and adapting.
Learning and strategies.
New ambitions and goals
Suitable for autistic me.
Making it work.