Circles

Amazingly, this is my 100th post on this blog. When I first posted to it, last December, I didn’t know whether it would ever get beyond The Discovery, and it was really just a convenient way to let people know that I had discovered I was autistic. In the last four months the blog has seemed to acquire a life of its own, and, from time to time, a few people seem to read it. I can hardly believe that it’s only around eight months since the idea of my being autistic was even suggested – in that time I’ve learnt so much about myself and my life and just how much being autistic has influenced me during the last 45 years.

One of the criteria for receiving a formal diagnosis of “autism spectrum disorder” under the current system is that autistic traits and behaviours need to have been present throughout life (because autism is a lifelong condition). Consequently, the diagnostic process involves a lot of looking back through life and, particularly, back to early childhood. I’m fortunate enough to have a mother with a good memory who is still alive and was able to supply me with lots of information about my early life (I’ll write more on that another time), and it has been interesting to discover what she remembers about my childhood and how it relates to my own memories and experiences.

I’d like to indulge, if I may, in a little imaginary time travel, back through my life, to what, for me, has become an important point as far as my life as an autistic person is concerned. I start from now, 2017, when I am 45 years old, newly diagnosed, and slowly recovering from an episode of burnout. As I go back through my life I think about the 39-year-old receiving a diagnosis of bipolar disorder, the 36-year-old who still couldn’t cook a meal, the 33-year-old who got randomly ill on holidays, the 29-year-old who spent nights bashing their head against the wall and drank bottles of whisky and ate packets of pills and hoped never to wake up again, the 26-year-old who sat at their desk trying to write their doctoral thesis while feeling like they were in a bubble and the world was unreachable, the 23-year-old who graduated top of their class but who ate the same thing for dinner every night and drank alcohol before breakfast every morning, the 19-year-old who couldn’t learn from lectures and dropped out of their first degree, the 16-year-old who was still being bullied at school and whose best friend was a cat, the 13-year-old who was routinely pinned down on the floor of the toilets by the other kids, the 9-year-old whose headmaster thought they were being abused at home, and, eventually, my time travel stops in a primary school in Bradford in 1975, where a little girl sits on the steps of a temporary classroom, crying.

The little girl is crying because it is playtime and she hates playtimes. She hates small children. They are noisy and they run around all over the place in a disorganized manner, and some of them step on the cracks in the pavements which means that very bad things will happen, and they are mean to her and some of them eat sweets in the morning which is against the rules, and so she cries, and she waits, desperately, for playtime to finish, so that she can retreat to the safety of the classroom where there is a teacher who might protect her, and where the children sit down and where it is quieter.

I know these things about the little girl, and have always known them, because I remember them. I remember many things about being 4 years old, but, as I started to question my mother, I discovered that there were things about my 4-year-old self that I didn’t know. One of these was that my teacher summoned my parents to school because she was concerned about me. I didn’t interact with the other children, and, most particularly, I wasn’t learning to write. I just sat and made my pencil go round and round in circles, filling page after page with scribbled circular patterns. The teacher said she’d never encountered a child like me and didn’t know what to do.

Finding out about this “circle drawing” was the first of many rather surreal discoveries about myself that I’d never have made if I hadn’t started asking questions because I was gathering information for an autism assessment. It shocked me somewhat, and I felt a huge sadness for that frightened stressed little kid, trying to withdraw from the world into something comforting, trying to survive in what felt like a very hostile environment. I cried many tears for her, because I couldn’t go back in time and help her, and I knew what she would have to go through before she finally understood why life was so tough. Just after diagnosis I wrote the letter below (complete with muddled tenses) to her, and during the information-gathering stage I went to a shop and bought pens and paper and drew circles and coloured them in. Because that was all I could do.

You will now realise why the “profile picture” on this blog and on the facebook page is what it is, and why I chose that particular picture for the post in which I revealed publicly that I am autistic. Today’s picture is from a similar, but different, drawing of circles.

The most important question I had for my autism assessor during my follow-up appointment was something like this: “If I had been 40 years younger, would I have still been receiving an autism diagnosis at this point in time, i.e. in 2017?” Her answer was that I would have. And she went on to say that, with the knowledge of the present day, the point at which I would have been identified as autistic would have been the point at which I went to school and sat on my own drawing circles and my teacher was concerned about my behaviour to the extent that she summoned my parents in to discuss it. That coupled with things we know about my behaviour at nursery the previous year, and various other things during my early development, would have triggered a diagnosis.

For some reason, knowing that, if I were 4 years old today I would be being diagnosed autistic, as a 4-year-old, is important to me. I have tried to think about why that is, and I came to the conclusion that the diagnosis my 45-year-old self received in February, although it covers my entire life, is a diagnosis for the future, for planning, for strategies, for rebuilding my life. The “diagnosis” my 4-year-old self received, retrospectively, in the follow-up appointment yesterday is, for me, the diagnosis that starts the process of making peace with my past – it feels like some kind of justice for that distressed little girl, crying on the steps of the classroom.

Of course, the other reason that age 4 is so significant for me as far as being autistic is concerned is that, as I started school and had to work out how to survive, it was the time I started to mask. It was the time that I started to learn what to do by watching other people, teaching myself to interact with other human beings. The social codes that came so naturally and intuitively to most others, who sought out human contact, were things that I had to learn through a cognitive process. I’m only just beginning to understand this, and how it has impacted my life. Being undiagnosed protected me from being “written off” or “cured” or whatever, but it meant that I worked fearsomely hard to try to make the world work for me and expectations were made of my abilities that I simply couldn’t fulfil. I believe the damage to my mental health started around that time – as an undiagnosed 4-year-old trying to fit in, learning to sit still, learning to socialize, and to do as I was told to avoid punishment, I was storing up the trauma that would eventually result in decades of mental illness and suicidal ideation (which switched to active attempts to end my life in my late 20s).

I’m certain I’ve mentioned it before, but one of the things that is so interesting about an autism diagnosis later in life is that it not only suggests strategies for coping with life better in the future, it also makes sense of the past. I cannot change the past, obviously, but getting the “diagnosis” for my 4-year-old self is another step in accepting it and understanding it.

Dear Four-Year-Old,

I was talking about you recently, to some nice people.

I was remembering what it was like for you at playtime at school. I was telling the people about the three big girls who used to be mean to you, and how noisy it always was at playtimes, and how much you wanted to get back to the safety of the classroom where there was a teacher who might protect you from the other children, who were frightening and who you didn’t want to be with.

I was also talking to your mother recently. She was telling me how she and your father were summoned to school to talk to your teacher, because there was a problem. In fact, there were a few problems.

I know you could already read very well before you went to school, and the teacher wasn’t very pleased about that, because she was supposed to teach you to read but you already could. She wasn’t very happy with your parents, who had supplied the books.

I found out from your mother that your teacher was concerned because you weren’t learning to write, like the other children were. Instead of writing you just sat and made circles in your writing book, using up all the paper, and any other paper available. Your teacher said that she had never met a child like you, and she didn’t really know what to do. Your parents didn’t know what to do either, so it was decided that you would not be allowed any more books so you didn’t damage them or use up the paper by drawing circles on it.

I know where you lived. I remember the street. I also remember that some kids from the street let your Space Hopper down and you were really unhappy about that because you loved bouncing up and down the street on it. And even though there was a man who worked at the garage and took it to blow it up again it wasn’t quite as bouncy as it had been before, which was sad.

I could send this to your address, which I still remember well, even though you only lived there briefly. But it would never reach you, because the mail can only go forwards in time, normally a few days or weeks. It cannot go backwards 41 years, which it would need to to reach you.

Neither can I come back in time myself, because there is no time machine. But if I could, I’d talk to your parents and teacher. And I’d try to explain that you are a bit different from most other children, and I’d give them a list of things they might look out for, and I’d work out what they could do to try to help make your life a bit easier, because I know that your life turned out to be very very hard in so many ways.

I’m not sure how convincing I’d be. A crazy person from the future, nearly as old as your granny is in your time. And, of course, there would be so many problems anyway because most of the information I have now is from books that will not be written until decades after the time you live in. I have a magic machine that allows me to read lots and lots of information about kids like you, but it won’t work in your time, because it relies on things that haven’t been invented yet.

If I could come and see you I’d try to protect you. I feel sad that you had to go through what you did, and I feel sad that your life was so hard and nobody knew how hard it was. I’d like to tell you that it got better soon, but I can’t, because you have many years of really hard stuff still to go through and many many tough times ahead. Life will be harder than you can even imagine right now. I’m sorry I can’t do anything about that, but you will find a way through, and eventually you will find out why it is like that.

But I would pick you up and hold you tight and tell you that you will, sometimes by strength, sometimes by accident, find a way to keep going through it all for at least another 41 years. There will be things that will help – your parents will not really understand you and they will not know for a long time that you really need extra help and support, but some of the things they do will help anyway. They will continue to supply books, which will help. They will get you a friend who is more comforting than any school friend could ever be, who will have soft fur and will purr for you. And they will let you do some of the things that make life feel better to you.

You know that recorder? The one you chew (yes, I know about that – I’ve still got it somewhere, and your teeth marks are still on the mouthpiece), keep playing it, and the other musical instruments you will learn in the future, because they will be really important to you. Keep reading and keep learning all the other stuff too – being interested in things and learning things is going to be one of the ways you survive in the world.

I will never be able to tell you this, but in 41 years time I will find out about the circle drawing, and I will draw some circles for you, because that is the best I can do for you. Because I am grown up now I can buy lots of really nice paper, and loads of books, and felt pens, and I can draw neat circles now and make patterns and colour them in – you’d have loved that!

When I finally tell the nice people all this, and I tell them about you and about all the other things your mother has recently told me, they will finally understand. And they will tell me some information that will explain why your life didn’t work out the way it was supposed to.

I can’t come back in time to care for you, or to explain. I wish I could.

But I will eventually find out why it all happened as it did and I will discover what makes life so hard for us. There is a word that describes people like us, even though nobody will apply that word to you in 1975. We are autistic.

The nice people listened, and heard all about you, and about the person you became, and they told me that my discovery was correct. You had a different sort of head. I have a different sort of head. We were never designed to fit into the world in the ordinary sort of way.

Stay strong little person. You will survive, and in 41 years you will understand. And you will finally be listened to and believed. And it will make life feel better and you can start to work out how to make an easier future.

See you in 41 years’ time!

A Forty-Five-Year-Old from the future

P.S. In 10 years’ time some girls at school will tell you that you’re too ugly to get a boyfriend. They are lying. You find someone who understands you perfectly and you will have a wedding with really nice cake!

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Validation

I had the first of two follow up sessions with my autism assessor. It had been a tough week, one that had tested my resolve to stay alive somewhat significantly. So much doubt, so many thoughts planted in my mind about whether I really knew what I was on about. Was I as wrong about things, as I had been told? Confidence so very low.

I parked. My husband met me, with coffee, which we drank while sitting on a low wall in the sunshine. We walked the 15 minutes or so to the arranged venue (different from where I went for the assessment, closer to home).

And there she was, the assessor. Same dress as before. Familiar. Room set up so I could escape if needed. Lights off, just the sunlight from the window. She made me a cup of tea and fetched my husband a glass of water. I took off my boots and folded my legs under me on the chair, gently rocking back and forth, chewing my fingers a bit.

We discussed the report. We went through the list of questions I’d sent her, one of which was particularly important to me. We discussed what had happened in the weeks since my diagnosis. We discussed the reactions of various people I’d told about my diagnosis – both the positive and the more challenging.

This is not the post for coherent detail – it is written on the evening of the follow up. I am feeling, for the first time this week, that it is worth staying on the planet, and that there might actually be a point to all this. I am relaxed, positive, and maybe even happy. I am not writing an academic essay right now, with proper structure or detail, just a brief account. Nearly one of those “maybe poems”, but not quite.

And, with a professional in front of me, I asked the other questions. Not the ones on the paper, the answers to which were so important to me in any case and really clarified things in my mind. But the other ones, the ones that have been swirling round my mind all week.

Because I had been told that I was wrong. I was told that my analysis of the situation was incorrect, and the implication was that I should listen to someone else, who believed they knew better than me, who believed that I didn’t know what I was talking about.

So I asked the professional. The person who has massive experience, and knows what the answers are to the questions. And she said I was right. My analysis of the situation and my needs was correct. I was not going crazy, and if anyone told me that I was wrong about these things then I should ignore them, because I did know, and I was right.

The sense of validation was huge. Maybe even more so than the day of my diagnosis.

We emerged from the appointment after an hour or so, having arranged to be in e-mail contact. Back into the sunshine and what had just become a considerably more lovely day. My husband bought me some cheese. We chatted for a while, about the positive experience and maybe some hopes for the future.

And he stayed in town to work, the work he has to do to sustain us. I drove home.

And didn’t consciously have to stay alive.

Because I am right, and I am validated.

In many many ways.

Special Days

I’ve never really been a person who makes a big deal out of “special days”. I’m the one who never sends Christmas cards, the one who sends birthday cards to everyone at the same time about once every five years, the one who never bothered with bonfire night or Halloween or sending valentines or waiting until Easter day to eat chocolate or marking nearly any other sort of “occasion”. I should imagine that greetings card retailers would very soon go out of business if everyone was like me. The only days that have been an exception have been New Year’s Day, when I’ve tried to set goals for the coming year, pancake day, when we have pancakes for supper, and our wedding anniversary, when we have potted meat for breakfast!

Since the advent of the internet, however, these “special days” seem to get rather shoved in my face. And many of them are really ones I’d rather not think about. This time of year seems to be awash with “days”, and I’m not really enjoying the whole “day” experience very much right now.

On Sunday it was Mother’s Day (or Mothering Sunday, depending on your preference). As an infertile childless person, Mother’s Day really really doesn’t work for me. It’s a reminder, every year, of something big and painful and missing in my life. I know I’m not the only one who feels this way about it, for a variety of reasons. This year I tried to spend most of the day staying off facebook, but that was also, in its own way really tough – I now have very little life that isn’t online, and cutting myself off from my only real social life can feel really lonely at the moment because I’m not well enough to do anything else that would otherwise distract me for the day. I had been coping, just about, with life until then, but that really was the last straw, and I’ve really been struggling since.

Then, of course, next weekend, we have April Fool’s Day. Another day when I’ve tried, by and large, to stay away from any sort of internet or TV until midday. I have never understood the premise of April Fool’s – it seems to me to run thus: tell a lie, then when someone believes your lie, tell them they’re stupid! And some people, for some reason, find this funny. I KNOW I don’t get this sort of humour – I never have, and my memories of the day as a child were that people constantly told these lies, then told me I was stupid, and the whole thing is an exercise in embarrassment and humiliation. I got to the stage where I simply didn’t believe ANYTHING anyone said on April the 1st in order to save everyone the trouble. I’m quite happy to declare, these days, at the outset, that I know I’m an idiot, I know I can’t tell if it’s a joke if you don’t put a winky face by it, and please don’t complicate social interaction further by deliberately saying stuff that’s false (the same applies, by the way, to the internet “jokes” where someone then “catches” you and sends you a message telling you that you “fell for it”).

And now, to add to the pain of Mother’s Day, and the humiliation of April Fool’s day, there are two “new” days to add into this time of year. It is, apparently, World Bipolar Day on April 30th and Autism Awareness/Acceptance Day on May 2nd.

So here am I, an autistic person with bipolar disorder, sitting here wondering what I should do about this. Because here am I, supposedly articulate intelligent blogger with insider knowledge of both bipolar disorder and autism, and I should really really be doing something about these “days”.

But I am stuck. I cannot “perform to order”. My husband writes a weekly “column” for an online magazine, and has to produce this thing week in week out, whatever the weather, however many meltdowns his wife had that week, and however many times he was required to go to the shop that day because the only damn thing she’d eat was milkshake and cheese and we’d run out of milkshake and didn’t have the right sort of cheese. He performs wonderfully – he is a skilled enough writer that even when his spoons are running low he can still write, just as even when mine are low I can drive a car and play an orchestral viola part without much difficulty. However, I am NOT a skilled writer. What might or might not be apparent from this blog is that, although I might post the posts on consecutive days, I often write three or more in one sitting but then don’t post them all at once. I have days when I can barely even write a facebook status – so the thought of having to produce something particular for a particular day throws me into a horrified paralysis where I can’t produce anything at all.

So I feel guilty, because I should be doing something spectacular for these days. I should be making memes and posting them on the facebook group. I should be explaining bipolar disorder and autism to everyone I meet in the street. I should be helping others with both conditions (conditions was the best word I could think of here) to understand and to feel less alone and more loved and all sorts of other lovely positive feely helpful stuff. And I really can’t do all that just at the moment, because I don’t have the spoons. In recent months I’ve spent a lot of time on groups with autistic people – I’m becoming aware of the vast variability in people’s experiences of autism, I’m learning how offensive many autistic people find the “puzzle piece” to be and how it’s tied up with all sorts of harmful and damaging therapies that attempt to make autistic people “look normal” from the outside, while breaking them inside (one of the advantages of not being diagnosed as a child is that nobody actively tried to “cure” me, although the exterior pressure to conform and to behave “normally” did damage me very badly anyway – I looked great in my early 20s, and if I’d been known to be autistic as, say, a 23-year old, then I’d have been held up as a model of “success” and my graduation photos would, doubtless, have been turned into memes and plastered all over facebook if it had existed, but the damage was being done inside to such an extent that by the time I reached my late 20s it was a totally different story – they wouldn’t have been making memes about my life at 29, which largely consisted of breakdown, burnout, spending night after night banging my head against the wall, and downing bottles of whisky and boxes of pills in an attempt not to wake up the next day or ever again).

And I should be telling this tale. And I should be learning all the politics and finding out which organizations are listening to autistic people and which are not. I feel like I should be going online and telling parents to let their autistic children flap their hands and jump up and down and communicate in ways other than by speech and eat soft food and wear comfortable clothes and so on and so on and so on. And, as an autistic person who can communicate by writing, I should be advocating for all autistics to be able to be themselves because none of us should have to mask or pretend or to be abused or to damage ourselves in order to “fit in” with a world that is difficult enough to cope with anyway.

But I’m still struggling with my own issues right now. I’ve had my diagnosis for only just over 5 weeks. I didn’t even have a clue I WAS autistic until just over 7 months ago. I’m still adjusting. I look at the people who have written much better blogs than this and had books published and all sorts and I feel like I should be doing the same (I was brought up to be a high achiever – the fault of the exam results discussed in Expectations Gone) but then I remember I’m really very very new to all this. I’m also coming to terms with my own childhood whilst being exposed to parenting issues in a way that is really tough as I’d largely withdrawn from anything to do with childhood or children prior to autism stuff entering my life. And I’m in the midst of the menopause and getting used to the idea that my father has terminal cancer and trying to navigate the stresses of applying for benefits so we don’t end up bankrupt. So my head is rather full.

I lay in bed this morning wishing I’d never met my husband – because he is the one who has kept me alive and if I’d never met him I’d be dead by now and all this malarkey would never have happened. I’d have cosily committed suicide some years ago and my affairs would all be long since dealt with. (This sentence did, of course, prompt me to think that there must be a “suicide day” too, so I googled it and discovered that it’s not until September, so I don’t have to worry about that one for the time being, which is a relief). But that’s how low my spoon drawer is right now. (I KNOW this place, I’ve been there many times, and I’m not in immediate danger so don’t worry about sending the cavalry – my executive functioning is too poor to do anything drastic right now in any case and my autistic adherence to routine is keeping me going in a bizarre sort of a way). I’m better than I was earlier today, but in order to start to feel better my speech had to vanish – I have spent most of the day today completely nonverbal from a speech point of view (I often feel very very ill and extremely bad just prior to my speech disintegrating, and when the words go it is usually a big relief). Fortunately I didn’t have to be anywhere today or make any telephone calls!

And so, for now, I come to the conclusion that the best I can do is point people to this blog, which is the place that, so far, I have best managed to explain the many many thoughts that are in my head, and where I have translated more thoughts into words than, possibly, I ever have before. Of course, I’m not very GOOD at pointing people to the blog (although I’m trying), because I’m possibly one of the worst publicists in the history of publicity, but it’s here, and it is what it is. For myself I need to practise enough self-care to get through all this. I need to try to eat and drink regularly. I need to continue to use this blog as something to help me, rather than something to stress me (I’m not, after all, being paid to write it, and nobody asked me to write it – I sometimes wonder if anybody’s even reading it, although indications are that a few people are glancing through it from time to time).

Maybe I’ll see something on facebook that will trigger a blog post relevant to one of the “days”, or maybe it won’t. Maybe I’ll be more equipped to talk about awareness or acceptance or whatever next year, and I need to cut myself a bit of slack for now – I can’t answer every question on facebook or call out every mistaken post or fight with everyone who posits some crazy idea – I just don’t have the energy. I’m very much having to choose my battles right now!

Recovery Time

I’m aware that I continue to be a bit absent from this blog at the moment. I’m finding getting the energy together to post is currently a bit more challenging than it has been, and the words aren’t flowing very easily.

I’d say there were probably several reasons for this.

1. I’m trying to get out into the world a couple of times a week at the moment – every time I leave the flat it uses huge amounts of energy and I need a lot of time to recover. But sitting in the dark by myself in a very small, cramped, untidy flat for around 14 hours a day on average isn’t very exciting, so I’m doing what I can to make life a little more interesting.

2. I’m using additional energy to communicate with my family following my father’s cancer diagnosis. I’ve fixed up to meet with him in a couple of weeks and that has become a priority for me.

3. I’ve finally admitted that studying maths is not going to happen for the foreseeable future, so I’ve been spending a little energy adjusting to that too. It was evident that it had become too much for me, but it was, to an extent, keeping my adrenaline levels up.

4. After months of really terrible eating patterns I’m making more effort to eat a bit better. I’m lucky enough to have a body that is remarkably tolerant of the problems my mind causes it, but I’m also aware that looking after it a bit is important.

5. I’m trying to sort out administration and paperwork and financial type stuff at the moment. Just because I’m falling apart and autistic and so on doesn’t mean that the electricity bills and so on stop. My husband is doing an amazing job caring for me, but he is only one person and I’m trying to contribute a bit to the running of our lives when I can.

6. My autism diagnosis is starting to sink in. I still need to go through my draft report thoroughly and get my follow up appointment arranged and think about the sort of support I need and so on. But, like giving up on the maths, the immediate and urgent need to produce evidence and the stress and adrenaline of pursuing the diagnostic process is over.

So, partly I’m trying to direct some of my attention elsewhere, but partly I’ve really seriously crashed energy wise. I tried to get up at 9 this morning, got as far as having a drink, then fell asleep on the sofa until midday. The months last autumn where I didn’t sleep at all are catching up with me now, the stress of the diagnostic process has left me exhausted, and I’m still considerably burnt out and trying to recover from what has evidently been an episode of severe autistic burnout. I currently need a lot of sleep, and even more rest, and as I’m using energy and executive functioning skills to try to eat regularly I have fewer resources available for turning on the computer and making blog posts.

I’m certain this is just another phase in the process, and the exhaustion is just something I have to deal with for now. My energy levels are very variable, and at the moment there’s nothing much I can do other than go with how things are and take the time I need to do the things that are most necessary.

I suspect this is all part of it. Discovering, in my mid-40s, that I am autistic is proving to be exciting, a relief, stressful, anxiety making, completely mind blowing, and, at the moment, utterly exhausting.

I’ll leave you with a few words (below, in bold) that I typed into the iPad the other day, but which I was too tired to turn into a blog post. Just the process of turning my thoughts into words is often hard enough, but then getting the right bits of computer and so on coordinated sometimes makes things impossible. Someone once suggested I should get an app for the blog – the thought of something so difficult (that sort of thing really is difficult for me) reduced me to tears – I’m sure my way of doing things is not the best, but the energy for learning something new simply isn’t there right now – new apps and things will have to wait until I’m better. My husband will testify that new computers and phones and so on have all led to meltdowns and tears and I resist technological change really strongly – even when it’s for the better – because it causes me such huge anxiety. I usually only change anything when I’m absolutely forced to!

I should add, however, that, just over three weeks after my diagnosis, I am continuing to feel a certain sort of “better”. I can already feel that although life will always be a struggle, there is an underlying mental wellness that I haven’t known for decades, if at all. And I now feel more confident in telling people that I am autistic and feel that I believe it myself much more. The process was difficult and exhausting, but, ultimately, for me, is already proving to be worth it. Accepting that I have a lifelong condition that will always limit me is not the easiest thing that I’ve ever had to do, but refusing to accept and embrace it won’t make it go away, it’ll just make my everyday life more difficult than it already is. It will take a while to work out exactly how best to live my life and to work out how to adapt it to make it as good as it can be, but having the formal diagnosis is already making that easier for me.

Yesterday,
I was out in town.
Conversation and coffee,
Socialising and shopping.

Not very much of the above,
Admittedly,
And nothing bad or especially
Difficult.

But enough
That

Today
I am quiet at home.
Tiredness and television,
Resting and recuperating.

Need so much of the above,
Always,
Even when I have had a
Good time.

Not energy
Even
To post this
On the blog.

Changed Life

My life is an interesting mix at the moment. I say “interesting” because one of my ways of coping with things is to be “interested” by them and to learn. Feeling emotions is, on the whole, difficult and complicated, and I’ve never received any training in how to feel things, so it confuses me somewhat. However, the education system I went through did provide me with ample training on how to learn and analyse things, so I tend to retreat into learning and analysis whenever possible. My head is wired in such a way that I have wondered all my life why school spent so much time teaching me the easy stuff (for example, mathematics), but so little teaching the difficult stuff (for example, what to do in a tea break at work). I realise now that that might be because many people don’t naturally go off and learn mathematics for fun just because it’s interesting, and most people seem to have some innate knowledge of how to cope with tea breaks and haven’t had to spend years observing other people to learn what to do and how to handle such problematic situations.

Anyway, there are two conflicting strands intertwining in my head at the moment. The shock of my father’s diagnosis (see Reactions to Diagnoses) is still very present (although now, over a week in, I am starting, slowly, to process it), and I’m beginning to work out how to adjust my life in order to spend some time with him during the next few months. I’m trying to focus on sorting out the practicalities of visits and arrangements at the moment, and my priority is to use whatever energy I can to do what I need to do in a timely manner.

But I’m also acutely aware that I currently have very limited energy. Interestingly, other things in my life have suddenly become less important. I have, for the time being, abandoned any thoughts of participating in running races. I am still very burnt out, and while I recognise how wonderful running is for me and for my health in general, what I need right now is to learn how to stop pushing myself and to rest. Coping with the overstimulation out in the world is something I’m finding difficult at the moment, and pushing myself into massive physical exertion only overtaxes my system further. I’m also having huge sensory issues with running kit, which is a different sort of fabric from my usual soft cotton t-shirts, and I cannot reliably wear such clothes at the moment without sometimes encountering waves of nausea. Furthermore, getting dressed at all is often still really challenging for me, so getting changed and changed again uses up so much energy that it’s really not a valuable use of resources. And that’s before I start on the hours of build up needed even to leave the flat at the moment! I fully intend to return to running seriously again, especially the long distances that are so fabulous, but I can easily put it on hold for now, while I recover. I need to get my energy back, work out how to deal with the crowds at races so I don’t end up crashing out of them like I did last year, and maybe I’ll ease myself back in via halves and marathons first, then return to ultras in 2018.

I’m trying to keep a bit of music going, but, for now, only familiar and relatively low pressure stuff. This time last year I was preparing to play solo Hindemith as part of a gig, and to perform a concerto in the summer, but this year I am sticking to a bit of gentle orchestral stuff and maybe a bit of fun chamber music should the opportunity arise. Nothing that requires hours of intensive practice or any great pressure – even the pressure of finding concert clothes and getting out of the flat to the gig and being surrounded by people and the sensory demands of the outside world is quite enough to cope with.

The other really difficult decision I need to make might well be forced upon me anyway soon. For years now I’ve been studying maths with the Open University. It’s been brilliant, but it’s also been a really rocky ride because my health has failed so many times over the years. Things have also changed massively with the way that the courses and degrees are organised and funded over the years, and for the last couple of years I’ve been desperately trying to finish my degree before it vanishes completely. The University have been very good, and the tutors I’ve had have been nothing short of excellent in their support, but I fear that I have now reached the end of the line. I cannot see how I can continue to work at the level I need to for the time being. Unlike running and music, however, which can be picked up when I’m better, I fear this really is the end for the maths. Had this happened 10 years ago I would simply have taken a year or so out then carried on, but that is now impossible (very long boring story to do with government funding, modules, student loans, deferrals, degree programmes and so on).

My husband is going to try to contact the OU and see whether there is anything to be salvaged (if there is, then we’ll do it), but that, in itself, is a problem because they will only speak to me and I’m not up to having the discussion right now. The problem with needing help is that in order to get help you have to be well enough to ask for help and if you’re not well enough to ask then you just slip off the radar and vanish – the same happened to me with disability benefits – I just gave up. I can’t contemplate any of it at the moment – all my energy is needed just for survival. Furthermore, any hopes that I would eventually “get better properly” and be able to use a decent maths degree (during the times I *can* work my marks are often high and might, with good health, have led to an excellent degree) to establish a good career, are now gone. The problems I have with energy levels and executive functioning and coping out in the world when surrounded by other people are the result of me being autistic and that is permanent. Just finding enough strategies to COPE at all with life is going to be a big deal – I now know that the possibility of a “successful career” is gone and that if I ever manage to work again it will have to be a very different sort of work from that I had in mind when I hoped to “recover” from whatever it was that meant I kept breaking.

So, life feels like it is changing rapidly. Priorities are altering, and the upheaval continues. My life, which, a year ago, I had been hoping to build up, has shrunk back down to something much more modest. Doing 100 mile races, performing concertos, and getting a good maths degree all seem to be in a different universe right now. My relationship with my family is in the process of changing significantly, my ambitions for life are undergoing a time of readjustment, and my entire identity has altered. I’ve moved from simply “not being very female” to actively describing myself as non-binary and I’ve discovered a world I couldn’t even have imagined existed a few months ago. It’s also still only seven months since the chain of events started that would lead me to discover, a few weeks later, that what I’d regarded as “normal” for the last 45 years was in fact “autistic”, and eventually to be diagnosed with Autism Spectrum Disorder just 2 weeks ago today. It is all really really life-changing.

Interestingly though, two weeks after diagnosis, my husband has remarked that for all the current problems in life, he perceives an underlying wellness in me that he hasn’t seen for a very long time. For all the upheavals, and all the strife, and the current difficulties, it would seem that the process of accepting who I really am IS eventually going to lead to a better life. It has become obvious from the “facebook memories” feature that for all my external optimism about life a year ago I was already really struggling, and the signs of impending burnout were already there – the life that I was still rebuilding was unsustainable, but I just didn’t know it.

And, now I am finally emerging from the diagnostic procedure itself, then, following shortly afterwards, the news from my father, I am starting to accept my changed life in a way that I wouldn’t have done previously. The angst I felt before diagnosis (even when everyone round me was telling me that of course I was autistic and go gently on myself and so on) is starting to recede and I feel, oddly, like a “more confident autistic”. For the first time in my life I am learning to take pressure OFF myself. For the first time ever, I’m able to tell myself that my head DOES work differently from the heads of most other people and that it’s true, what I mean by “tired” is different from what many other people mean by it (not all – obviously there are those who have other chronic conditions and illnesses and so on – I’m not referring to them, but to the population as a whole, to the people who CAN go out to work every day and so on). I am learning that being autistic means that my system gets exhausted JUST BY EXISTING, and I therefore need more rest than most people do. I am allowing myself to rest more FOR THE FIRST TIME IN MY LIFE, and I’m no longer forcing myself to constantly push through the bad feelings.

I’m finally letting go of the notion that I need to be all things to all people – I scroll past questions on facebook that I know I could answer, but sometimes I let someone else take the question because I know that typing a lengthy answer will tire me. I look at some of the posts and “advice” in the self-help and fitness related groups and books and I know now that this advice might work really well for neurotypical people, but that it doesn’t work for me because it doesn’t take into account that my neurology is different. Autistic people need a different version of the “self-help” manual – one that takes our neurology into account, one that recognises our differences and the extra work we need to put in in order to exist in the world and the fact that being with other people is utterly exhausting for many of us (maybe I’ll write one sometime)! I am starting to recognise that in order to stay well I have to question much of the “received wisdom” about life, and much of what I’ve learnt through the years. I need to adapt the advice, rethink the strategies, and alter my life accordingly.

And although I’d been learning lots and lots of this on my own, had disclosed my autistic status on this blog (see The Discovery) to anyone who cared to read it, being validated by a professional has, for me, given me the permission to change my life and to feel justified in doing so, which is why what happened two weeks ago today was so important. It turns out that even if the rest of the world was absolutely convinced that I was autistic and did everything they could to help and reassure me, the person who really needed convincing was me.

Reactions to Diagnoses

79-2017-01-05-13-36-21“Diagnosis” is a word that has featured rather heavily in my life recently, and even more so during the last couple of weeks. It’s a word that is loaded with all sorts of associations, both good and bad. A diagnosis can provide relief or despair, enlightenment or desperation. It can be something wanted and welcomed, or something that is most definitely not welcome and not wanted. But I would suggest that a diagnosis of almost any description provides information, and therefore the ability to make choices based on that information.

One of the first (and simplest) diagnoses I received was that of asthma. It was clear, once the doctor had assessed my lung function and made the diagnosis, what I needed to do. I was prescribed inhalers (and later pills), given advice about using them, and sent off to enjoy my new breathing capabilities (and new found ability to exercise). Once flu jabs were introduced I also started having one each year to reduce the likelihood of getting the sort of infection that might aggravate my already sensitive lungs. Although having asthma isn’t the greatest thing in the world, the fact that I received a diagnosis and can therefore get appropriate treatment is, in general, a really positive thing. Discovering that the reason I still had a persistent cough after many many months (I was drinking 2 bottles of cough syrup every day and not improving) was the result of my being asthmatic rather than having some more sinister problem was actually a great relief.

And so, a week and a half ago, I received my autism diagnosis. It’s not been quite as simple as getting a diagnosis of asthma, and the way I “use” (for want of a better word) the diagnosis will be very very different. It’s going to take quite a long time to work out how I live my life from now on and I’m going to have to continue to learn about autism, how it affects me and my life, and how I can best utilise my skills and compensate for my impairments to maximise my quality of life and productivity in the future. I’m already starting to adapt strategies that I’ve used for many years while coping with anxiety, depression, and bipolar disorder. I’m refining my notion of spoons (do read about Spoon Theory if you’re not sure what I’m talking about) and have already started to think in terms of “sensory spoons” and “social spoons” (thinking this way makes it easier for me to work out how much energy I have available for different sorts of activities). I’m considering how I can adapt the mood diary, which I’ve kept since my diagnosis of bipolar disorder, to include things relevant to autism – maybe how my various sensory systems are behaving, how good my executive functioning is, how exhausted I’ve been, what the state of my speech has been, how much my stimming has differed from whatever my “normal” turns out to be, and that sort of thing. I’m already certain that receiving this diagnosis is a positive thing and, although things are very difficult at the moment, I’m confident that they will eventually be easier as I adapt to my changed circumstances.

However, I was not the only member of my family who received a diagnosis last week. And I now have permission to say what it was that threw me into such a state of shock when I was told about it just six days after my autism diagnosis. I’ve been very much keeping quiet about it until I had explicit permission to mention it because we very much subscribe to Silk Ring Theory in our household, so as far as my autism diagnosis is concerned, I’m at the centre of the ring and I get to decide how to handle it and what I disclose. But somebody else’s diagnosis is entirely a different matter. However, this other diagnosis has affected me very significantly, and I hope that those who read this blog who are closer to it than I am will understand my need to mention it here.

A few weeks ago my father went for a routine health check with his doctor. Nothing very exciting – as far as anybody knew at that point he was a reasonably fit and healthy man in his 60s. Some blood was taken for a blood test, and when the results came back they were rather alarming. He saw a consultant just a few days after I received my autism diagnosis and received his own diagnosis – of advanced prostate cancer, which his consultant believes in his case will “see him off”. He then spent the next few days breaking the news as gently as he could to those of us who are close family members – my stepmother who was at the appointment with him, my mother, my brother, and me, followed by a few others. The prognosis is not fully known at this stage. There will be scans and histology and maybe biopsies (I’m not really very knowledgeable about all this stuff – though much more so than I was a few days ago). Current estimates vary between 12 months and (a “very slim chance”) 5 years (although there is always the tale of the outlier who survives much longer against the odds – it would seem that absolutely exact predictions are not possible). There will, obviously be treatment options discussed and weighed up, but the news that my father, who we’d sort of assumed would follow my grandfather into his late 90s, might well not reach 70, is a huge thing to absorb. My whole family is in shock, and my stepmother is in for a particularly hard time, for reasons it is not my place to write about here.

So, my life has been turned upside down yet again. My priorities are changing rapidly. I had hoped that after my diagnosis had sunk in, one of the effects it would have would be to go through some of the difficulties I had as a child, and also, particularly, some of the problems I’ve had with my father through my adulthood – many now obviously caused by undiagnosed autism and communication difficulties. For every event I’ve had with a boyfriend (such as that described in Mysterious Argument) there have been a dozen similar incidents with my father. I recall one from my late teens where we’d had “a fight” about something and I couldn’t explain any of it and I kept opening my mouth to speak to try to say something and couldn’t (I realise now that it was a nonverbal episode following a meltdown). There have been times throughout adulthood where communication has failed and not knowing I was autistic has meant that we have been unable to understand why things kept going so badly wrong. I was hoping to have years to go through all of this stuff and to be able to get back to the times when I was a younger child and my Dad was basically my hero, the one who was like me, and got me, and we could settle into a more comfortable relationship than has been the case through some of the more difficult years of my life.

But that now has to happen soon. I am already making plans to go to visit (he lives some distance away) and my brother is trying to work out how to organise things so that I can manage them. Considering I’m only managing to leave the flat around once or twice a week at the moment, it’s going to use a very great deal of energy. My father is, predictably, handling the whole thing by learning, and researching, and finding out all that he can. He’s taking a very practical and philosophical approach to it all. Exactly as I would have expected. One of the other reasons I’ve been silent on this blog for much of the week is that all my communication energy has been taken up communicating with my family. I spoke to my mother on the phone (she’s the only person I usually speak to at all on the phone, so that was reasonably smooth), and also to my brother (my words started to fragment somewhat, so we’ve now returned to e-mail), and my father and I have exchanged e-mails with things we hope to do together over the next few months. I hope I can find enough of the right words to say the things I want to say and to make some good memories for after he’s gone, because through all the difficulties and so on, he’s still my Dad and…

My reactions this week have been, maybe, predictable for someone six days out from an autism diagnosis. I described in Sensory Reaction how my system initially responded to the overload in my head. My husband worked only part of Monday in order to keep an eye on me, and to try to make sure I ate. Monday I basically felt completely numb. Tuesday I spent almost entirely dissociated, with no hope of any sort of functioning at all. By Wednesday my words were fragmenting and disappearing. Only yesterday afternoon did I regain any semblance of functionality, and it’s still very very brittle.

In a perfect world I would still be processing my autism diagnosis at this point, but the world is very much not a perfect one. I am, however, trying to use my father’s diagnosis as information to guide my actions (just as I take inhalers for asthma and just as I am learning to adapt my life to living a way that works for me as an autistic). I am rethinking the things I need to do in my life over the next few months and will be trying to find some sort of a balance that gives me time with my Dad, time to keep myself as well as possible, and maybe works out a way to leave some other parts of my life available to me in some form in the future. There are things I can simply drop for now and pick up later (they’re the nice easy ones), but there are some things that might not make it through because I simply can’t manage them and the option to continue in the future isn’t there. That’s just the way it has to be. Life happens and priorities change.

Diagnoses really do change lives – in all sorts of different ways.

Cataclysm

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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