FKM Officially!

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

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

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

Knackered
Shocked
Did all that really happen
Me
Autistic
Officially
Diagnosed

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

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

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

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

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

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

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

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

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

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

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

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

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

Too Bright

52-2016-12-25-22-53-15I have just changed the lighting in our sitting room – again. I’ve unscrewed yet another bulb from one of the main lights (which are made up of five stalks, each with a bulb on the end), turned the other main light off completely, and installed a lamp with a low wattage bulb instead.

A few weeks ago I stopped using the main lights in the bedroom and installed a lamp in there with another fairly dim bulb. I now only turn the main lights on when I really need to see anything. I also turned the brightness on my computer screen right down to the minimum, and even so can only manage to spend about an hour at a time working at the computer before I start to feel quite ill and need a significant break.

I have become seriously sensitive to light in the last few months, or, more accurately, I have become properly aware in the last few months, of just how seriously light affects my health.

I’ve always known that light levels mattered to me much more than they seem to to a lot of people. When I’ve been very depressed in winter I’ve been greatly assisted by both a lightbox and a “daylight” alarm clock. I also struggle, during the long days of summer, to get to sleep at night or to stay asleep past dawn if I don’t have complete blackout curtains. I even bought a special curtain rail that fits close to the wall so that not the slightest sliver of light can be seen once the curtains are closed. It has to be dark, really really dark.

My sensitivity to light is also, I have discovered, a large part of my inability to cope with shopping. Shops tend to be brightly lit places, with lots of fluorescent bulbs. I have recently been experimenting with wearing dark sunglasses in supermarkets and have found they help significantly with the nausea and exhaustion that I always assumed was part of the normal shopping experience.

Considering light sensitivity has also solved another mystery. Around 3 years ago we had to move to a rather small flat, and most of our possessions are currently in a storage unit some 20 miles away from home. They need sorting very badly, as they were packed in great haste and many are unlabelled. I’ve had several attempts over the years at going to the unit, unpacking a few boxes, and starting to sort through their contents. After around 20 minutes I become so tired I cannot stand, and not long afterwards I start to feel desperately sick and in a state of collapse. This has always puzzled me. I’m a strong, relatively fit person with a great deal of physical stamina (I run ultramarathons for a hobby), yet just unpacking a couple of boxes finishes me off. This has never made any sense.

Until, a couple of months ago, I considered the lighting in the storage facility. Which is similar to the sort of lighting in supermarkets, but even brighter and more intense. Unshaded and glaringly bright industrial strip lighting. And suddenly a mystery that has puzzled me for nearly three years was solved – the reason I cannot work in the storage unit is that the lighting in there quite literally makes me sick.

Obviously, we now have a problem to deal with – I have to be able to sort the stuff, throw what we don’t need, repack tidily the things we want to store until the time we can move somewhere a bit bigger, and rescue things that are precious and needed and bring them to the flat. But at least we now know what the problem is, so we can work on solving it.

My sensitivity to light also explains a couple of mysteries from my past.

When I was a teenager and first needed to wear glasses I thought that getting photochromic lenses would be pretty cool, and also really useful because I wouldn’t need to have a separate pair of sunglasses. Because my stepfather was an optician, he gave me my glasses as a present for many years, and I always had photochromic lenses because I discovered I really really liked them. However, by the time I was in my late 20s I’d moved away, things had changed, and I started to buy my own glasses. Because I was struggling for money, owing to being unable to keep any sort of job for very long, I simply started to buy the cheapest glasses, the ones with plain untinted lenses. My energy levels decreased significantly at around the same time, although it’s only with the benefit of hindsight and new knowledge that I’ve connected the two events, but now that I have, it’s rather obvious.

During the latter stages of the 2001 episode of burnout, I started to realise that I was going to end up in a rather serious situation with rent and food and so on as it became obvious that I was going to lose my job. I didn’t have the first clue what to do about this, so thought I would try to get to the nearest branch of the Citizens Advice Bureau in the hope that someone might be able to help me. I remember walking down the street, near where I lived in north London, and as I walked the light got brighter and brighter and brighter. Eventually it became so painful and so overwhelming that I collapsed onto the pavement. People rushed over to help me. And I eventually sat up, managed to rest for a while, and got to the CAB, who were no help at all.

The mystery about this episode was that as I came round I looked to see how other people were reacting to this sudden painful intrusion of brightness into their lives. And, oddly, none of them seemed to have noticed at all. They were just carrying on with their lives. The mystery of why these people hadn’t all collapsed in the street as I had was another that was only solved in the last few months, when I started to read about autism and sensory processing disorder.

So, discovering I am autistic has explained yet more mysteries from my past, and given me the information I need to work on solving problems in the future. I suspect some of the exhaustion I’ve felt when going home from jobs in brightly lit offices and classrooms has also been down to light, and if I ever do get well enough to work again then suitable lighting might be the sort of adjustment I’d need in order to stay in a job.

As far as we are able, we’re sorting the lighting out in the flat. Being able to just have gentle natural light would be lovely, but much of our flat is entirely internal, without windows, so we have to make the best use we can of the gentlest lighting we can cope with while also leaving the option for something brighter when we need it to see properly.

And I now have sunglasses, in my prescription, in two levels of tint, medium and dark. Wearing them out in the world is definitely helping me to cope. I wish I’d known years ago that something as simple as wearing sunglasses regularly would improve my life so significantly.

But I do now know. And this is why, although discovering I am autistic means I know I will never “get better” and I need to rethink my ambitions for the future, it also means that I can start to do things, such as altering lighting and wearing sunglasses, that will improve my quality of life on a daily basis. I can stop wasting energy trying to cope with unnecessary exhausting visual input and use that energy to feel healthier, or to achieve a little more, or even a bit of both!

Head’s Office

09-2016-12-15-16-03-53I was in trouble. Yet again I was in the Headmaster’s office. I can’t remember what I’d done, but it must have been something pretty bad because I was fairly certain I would be caned.

My misdemeanours usually came in two forms. The first – violent outbursts, hitting out, swearing, getting into altercations with other children. The second – failure to complete work, to present work sufficiently neatly, to do what I was supposed to be doing. I don’t know what I’d done on this particular occasion, but after weeks on report I was fairly certain I’d reached the end of the line and I stood there in my grey uniform with the chewed tie, waiting for the worst.

The Headmaster started to question me, which I found confusing. He asked me whether I had breakfast at home and what I’d had to eat this morning. I always had breakfast – my parents wouldn’t allow me to go to school without it – and it would have been cereal and toast, because it was always cereal and toast on a school morning. I told him this. He then went on to ask if I had my own bedroom at home. I told him I did. And he asked me what time I went to bed. I can’t remember what time it was, but I told him my bedtime, which was the same every night, and his response, which I can still hear in my head, was “That’s good and early.”

Then he started to question me about my parents. Were they good to me? I said they were OK, though they always made me go to bed earlier than I wanted. Did they ever hit me? I told him that they didn’t, but when I’d been naughty they lectured me on why what I’d done was naughty. Did they ever do anything that made me uncomfortable? I couldn’t think of anything. Did they ever touch me anywhere that felt wrong? I assured him that they didn’t.

I can’t remember much more than that (it was over 36 years ago after all), but I remember answering these slightly odd questions, wondering why he was asking me all these strange things and not just getting on with the caning thing. I remember eyeing the cane in the corner of the room, wondering whether it would hurt more or less than the ruler that another teacher had recently hit me with as a punishment for untidy work. I remember wondering how the cane worked and whether it would be on my hand, like the ruler had been, my bare legs, or through my skirt on my bottom.

I never found out. The caning never came. The Headmaster looked at me and said to me, very very seriously, that if there was anything, anything at all, that upset me at home, that I should come and tell him. And that it would be OK. And I could tell him anything. I was still very confused about this, because I couldn’t think of anything that I needed to tell him apart from some stuff about having to eat vegetables and I didn’t think he’d be interested in that. I assured him that I would tell him the minute anything bad happened. With this assurance, he dismissed me from his office and sent me back to the classroom.

I have never forgotten this incident. All my life I’ve known that I was very very naughty at primary school, constantly on report, and that I sailed so close to the wind that I was nearly caned and had this bizarre interview about my home circumstances. I put the naughtiness down to boredom, to being bullied, and to the general wilfulness that characterised my early school career. I realised that the Headmaster knew that there was something not quite right and, as I grew into adulthood, it became apparent to me that he was trying to discover the cause of my behaviour and was investigating the possibility that I was being neglected or abused at home.

But he never caned me. And he never did get to the bottom of my extreme behaviour or my problems in the classroom. But he tried. And he recognised that I was in considerable distress and knew that there was something going on. And, to his credit, he did his best to find out what.

At the end of the 1970s, an ordinary primary school headmaster in the north of England would never have guessed that the usually chatty wilful little girl who did well at tests, but whose behaviour was often challenging, was autistic. He’d never have known that she was constantly overloaded by the noise of small children surrounding her. He’d never have known that she didn’t complete projects because she didn’t really know what to do or how to go about it.

And the irony is that the little girl didn’t know these things either. She wasn’t making much effort to learn sums or spellings while at school because those things came naturally to her, but she was making an absolutely huge effort to try to keep the bullying at bay, to make a few friends, to work out how she was supposed to behave to fit in. She was processing massive amounts of information, building a mask that would cover her condition for decades to come, and working out what she had to do to survive in a confusing world. But she was only a small girl, and she didn’t know any of this. She just assumed it was the same for everybody because that was all she knew.

But now, decades later, she has finally discovered what was going on. And she’s thought of the Headmaster and how he knew there was something, but couldn’t work out what. And he tried, but, like her, he had no chance of finding the answer back then, because girls like her weren’t given labels or support and their difficulties weren’t recognised.

But he never did cane her. For which she was very grateful.

He did, however, make her stand up in assembly a few months later – so the whole school could applaud her for having the highest grade in the school on a musical instrument.

She must have been one of his more confusing and baffling pupils!

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.

The Discovery

03-2016-12-07-20-11-56

Although I was completely unaware of what was about to happen in my life, with hindsight, there were a few clues. And some people have since commented that they weren’t completely surprised by the outcome.

Looking back, there were occasional messages and odd comments made, I assumed, in jest. I largely ignored these, assuming crossed wires or fanciful imaginings. Panic attacks. Stress. That is all. I get so many messages telling me that eating more vegetables or taking some magic supplement or giving up gluten or wine or whatever would solve all my problems that I tend to smile and say thank you and leave it at that.

There was also some stuff on the internet. A video of a kid in a shopping centre. It’s supposed to show something. I don’t understand it. I just assume it’s a bit rubbish. Then a quiz. Just for a lark. Internet quizzes are notoriously daft. I think one once told me I should be a goat farmer in Borneo. I score several times in the mid-40s out of 50 on this internet quiz. Ha ha I say. Internet quizzes. I return to my dreams of goat farming.

However, within three days of leaving home to spend the summer living in a tent and playing orchestral music things start to go wrong. Badly wrong. Extreme “panic attacks” as I’m still calling them. Running away to hide in a shed as the result of one small thing upsetting me. Nights silently crying in my tent, unable to think, speak, or even put my torch on. The feeling of sickness and exhaustion that engulfs me half way through every rehearsal. My inability to focus, to play properly, to cope with any more than just sitting there. My reactions to apparently ordinary things is often so extreme that I completely lose control of myself. This leaves me drained, exhausted, and somewhat embarrassed.

I know I have mental health issues. I’ve had them for decades. I also know that eating in the big room with lots of noise and people is unbearable for me. So the people make an accommodation for me and let me eat outside. I don’t like having to be different, but maybe it’ll sort things out. I am sitting with someone who asks me what my diagnosis is. I tell her – bipolar disorder. She asks me whether I have ever considered…

Of course I haven’t, not seriously. Why would I? I smile and say “maybe”. Then I chat to someone else during a tea break. We sit side by side. She describes so much of her life that makes so much sense to me. She seems to understand what I say in a way that most people don’t. When the words run out we simply stop talking and drink tea. It is easy and feels unpressured. We don’t look at each other once throughout the conversation. That feels right. More relaxing, less exposed. I know something about this person. I start to think.

When I return home there is a book waiting for me, sent by a friend who has been following my trials and tribulations on Facebook. She says “I think you should read this.” Since it would be terribly bad form not to read such a gift, I start to turn the pages. And the pennies start to drop. Slowly at first. There are similarities. Yes. But me? Really? No! Well, maybe. But this is how my life is. This is just normal life, surely? It’s certainly normal life for me.

I buy another book. A book with lists of “traits”. The slot machine in my head hits the jackpot and the steady drip of metaphorically dropping pennies becomes a deafening cascade of metal discs. This, improbable as it at first seemed, appears to be the case. I do the Internet quiz again, several times, taking it more seriously this time. My most oft-repeated score is 47.

My husband and I start to make notes. To compile data. I dredge up memories from childhood. Of bad behaviour. Of the junior school headmaster who questioned me about home life as he thought I was being abused – he sensed something wasn’t right, but didn’t know what. Of being bullied from reception to sixth form. Of hours on the swing. Of fear of the telephone. Of biting my nails until they bled. Of sitting alone in my bedroom most of the holidays. Of crying at playtimes.

And through my early adulthood. Of abandoning trolleys in supermarkets. Of exhaustion so severe that I would collapse or be sick. Of crippling depression and suicide attempts. Of my inability to sustain employment or be financially independent. Of my notorious inability to cook a simple meal or remember to eat. Of waking up most mornings for the last quarter of a century thinking “How long can I keep going with this life that has no place for me and that I find so difficult?” Of cutting labels out of my clothes, being unable to wear bras or tight waistbands. Of lying in bed shaking after social events. Of deadlines missed. Of the hours of planning needed to get out of the house. Of jiggling my legs and playing with my hair and chewing up pens and rocking gently backwards and forwards on the sofa. And so on and so on and so on. Pages and pages and pages of it.

I make a double appointment with my GP. We take the notes. The pennies start to drop in her head too. She remembers an incident where the local swimming pool called the surgery when I was detained there, apparently violent and extremely distressed. Meltdown. Too much noise. Too many people. Somebody kicked me. Invaded my space. I couldn’t cope. I gave up swimming.

My GP writes the referral. I go to a rehearsal that night and then away for the weekend without it really sinking in. But knowing that my GP believes me. Relief. A sudden feeling that all that had gone wrong in my life all these years was Not My Fault. A communication issue. Different perception of the world – over and under active sensory systems. Not just fussy. Not naughty. Not lazy at all – in fact, quite the reverse. My life, which I had long viewed as a string of failures, I now see as remarkably successful, given what I was dealing with. I achieved so much while masking a condition that made life so difficult.

Alongside the relief, I feel a sense of sadness that this was not spotted earlier. That I have lost my youth to illness and difficulty. That I am deeply in debt, have received almost no support, and have spent my life being told that I am so intelligent I’ll be able to cope and that I should work harder, smarter, manage my time better, just get my act together. Impaired executive function makes these things very difficult, especially when I’m already working at my limit to cope with the sensory overload and the complexities of interacting with other human beings. Time agnosia means that I’m actually an expert in time management, but still struggle with deadlines. I thought it was like this for everybody, but that they somehow had access to energy I didn’t and they were tougher than me.

I start the wait for the formal diagnostic procedure which I know might take months, and continue to gather evidence, while trying to cope with my fears of the diagnostic process. However, it is so obvious what has been going on all these years that I absolutely believe it. I speak to my mother and learn about my early life. I was a 4-year old who sat on my own and obsessively drew circles all day and couldn’t be persuaded to write. The teacher said she’d never encountered a child like me, but in the early 1970s nobody knew what to do about me – other than removing the paper to stop the circles. My only memory of that time was crying every playtime as I was mercilessly bullied and the playground was painfully noisy.

I start to adapt my life, and things get easier. I realise how looking at people’s eyes saps my energy. I can do it, but there is a cost. I consciously start to spend more time alone. My next pair of glasses will be tinted despite the fact that I can’t really afford them because it will help the confusion and nausea I get in bright conditions. These adaptions also come with a sadness that I know I will have to exclude myself from many social situations if I am to stay well. I will have to change my life for ever if I am not to pay a heavy price. If I plan to go to a dinner or social event I must leave two blank days in my diary for recovery. And the chances are I will end up feeling sick and in meltdown too.

But I also discover behaviours long hidden that feel beautiful and soothing and joyful to me. And I allow myself to explore what my body naturally needs to do to be comfortable and happy, even if it is counter to what I have learnt about societal expectations over the last 4 decades. The word “stimming” is brand new to me, but it turns out I’ve been doing it much more than I thought throughout my life. Now I discover how I can dissipate some of the immense stress I feel by flapping my hands and sitting on my feet and simply not forcing myself to stay still. My whole system breathes a huge sigh of relief.

The whole process of discovery and realisation took about six weeks. Six weeks of public meltdowns, many tears, massive amounts of learning and reading and researching, acute anxiety, way too much wine, almost no sleep, difficulties eating, and hours and hours of discussion with my husband and one or two others. The culmination is the biggest thing that has happened to me in my life. Ever. No question. The thing that will eventually enable me to be more myself than I have ever been, happier than I have ever been, despite the inevitable challenges that interacting with the world will continue to present.

A few days after the visit to the GP, unable to wait, as I had hoped, for the formal diagnosis, I type the words that finally make sense of my life, that feel like coming home to where I should be. It feels very strange, almost unnerving, but it also feels right. Very very right. To finally realise and admit what should have been obvious all along, but which nobody saw until this year.

I am autistic.