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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Evolving Understanding

Now that I come to see it written down, that title seems really really strange. But I can’t think of a better one, so it’ll have to do. What I’m trying to say is really something along the lines of “I want to write about how my diagnoses (particularly with regard to mental health and neurology) and my understanding of those diagnoses and ability to discuss them has evolved over time” but that’s way too long for a blog title!

In addition to being autistic, I also have bipolar disorder (bipolar II to be precise – which means that my manic episodes are actually called hypomanic episodes and are somewhat more moderate than the full mania of bipolar I, but that my depressive episodes are generally longer and more extreme than the depressive episodes usually associated with bipolar I (there are also other forms of bipolar disorder, including cyclothymia (often called rapid-cycling) and, I believe, something about mixed states or not specified – my knowledge on current bipolar disorder designations is a bit rusty as I’ve not done much work on it recently and I don’t have the time to do a research project on it today)).

I was formally diagnosed with bipolar disorder in 2010, although I had evidently been self-diagnosed for some time before that. I briefly wrote about my experiences back in July 2009, and I was clearly already comfortable with the self-attributed label at that time, so I suspect I had been self-diagnosed for some while before then – I really can’t remember. I have openly and comfortably spoken to anyone who cares to listen about bipolar disorder, depression, and anxiety for many years now, and I’m currently learning to do the same regarding autism. As it’s bipolar day today I had wondered whether simply to share my previous writing about my experiences with bipolar disorder, but when I looked up those writings my rough style and my evident lack of knowledge were just a bit too grating, so I decided to write this post instead.

And so we come to the notion of evolving understanding. It is clear from my 2009 writing that my own understanding of my mental health and neurology has evolved massively in the last 8 years. It is also clear that the understanding of autism in general has evolved massively over the last 8 years. And it is also clear that some of the issues in my life that I attributed to bipolar disorder back in 2009 were obviously related to my being autistic, as this quote, from 2009, shows:

“Every so often I get stressed, sometimes for no apparent reason. And sometimes, as happened when the treadmill broke recently (it was really just the last straw), I go over the edge. I cry uncontrollably, I am unable to focus on anything and incapable of making even simple decisions. Work becomes impossible. I feel terribly guilty. Eating normally becomes impossible. My senses go haywire. I shake uncontrollably. My legs HURT. And the world becomes a very frightening place, full of bright lights and loud noises, where even little old ladies with sticks seem to move at the speed of light. It is worse in the mornings. And, as I am now discovering, rather hard to write down in a way that makes any sense.”

Bipolar disorder, particularly bipolar II, and particularly in those who are AFAB (Assigned Female At Birth), has traditionally been a common misdiagnosis in the days when the understanding of autism was poorer than it is today. I did wonder, when I received my autism diagnosis, whether my bipolar disorder diagnosis would be removed, because so many of the ways the two conditions present and interact can be similar. However, bipolar disorder is also a common comorbid condition with autism, and the prevalence of bipolar disorder in the autistic population is far higher than in the population as a whole. During my assessment there was a long discussion about my mental health and about how bipolar disorder and autism interacted in my life, and I’ve also mentioned this interaction in the post about Different Language. The conclusion was reached that bipolar disorder is, for me, a comorbid condition alongside autism, and the two have to be considered together.

It’s also obvious now, from the quote above, just how many of the characteristics I ascribed entirely to bipolar disorder in 2009 were actually part of my being autistic (“My senses go haywire” and the subsequent descriptions of sensory problems associated with light and sound are obviously autistic characteristics, in hindsight). For the best part of a decade, bipolar disorder was blamed for pretty much everything that was “wrong” with me, and for a decade or so before that it was simply “anxiety and depression”. As life has progressed I’ve steadily acquired more diagnoses (and more “labels”), which might be seen as bad in some ways, but is actually providing me with much greater understanding of how my head works, and I hope, eventually, how to control it sufficiently to live a life of reasonable quality.

Perhaps, when I’m a bit more able to focus than I am currently, I’ll write a bit more about bipolar disorder and how it affects me and how it fits into my life. I’ve spent most of the last decade becoming reasonably competent at managing the condition, through a combination of medication, various talking therapies, mindfulness, and, possibly most important of all, keeping a daily mood diary (which I did for years until summer 2016 when the “autism hypothesis” was formed and things went completely crazy – once I am a bit more settled I shall set up a monitoring system that takes both bipolar disorder and anxiety and autism into account). Although some of these treatments were not totally suitable for me because they exacerbated issues caused by undiagnosed autism, they did, on the whole, work for management of my bipolar disorder – what I need to do now is to adapt them so that they’re working WITH my neurology to improve my mental health, not against it.

And my understanding of mental health issues and neurology continues to evolve, as, I hope do the understandings of others. Part of the reason I write this blog is to try to understand things myself (it is well-known in teaching circles that explaining things to other people is a good way to test understanding) and also to try to help others understand the complicated world inside some of our heads!

I do, however, fear that I’ll look back on that last paragraph (and possibly most of the rest of this blog) in 8 years’ time and think that my “rough style and my evident lack of knowledge were just a bit too grating”, just as with the 2009 writing, so maybe it’s time to stop here.

Euthymic bipolar day to you all!

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!

Extreme FOMO

The post about saying farewell to the strong woman actually started off with the above title, but it grew into something else, so I’ll have another go at talking about extreme FOMO here.

Just in case there’s anyone reading who doesn’t already know and hasn’t already googled, FOMO stands for Fear Of Missing Out, and it’s defined on Wikipedia as “a pervasive apprehension that others might be having rewarding experiences from which one is absent” and goes on to mention the anxiety of missing out on opportunities for social interaction, fear of having made erroneous decisions, and regret.

Of course, everyone gets FOMO sometimes. I think it’s unlikely that anyone reading this hasn’t, at one time or another during their lives, either missed out on getting tickets for a concert, had to pull out of a race injured, been unable to attend a celebration owing to illness, or simply had to turn down an invitation because they had to be elsewhere at the time – such is the nature of a modern busy life. There are, basically, so many interesting things to do in this world that it would be impossible to do them all and difficult choices have to be made.

Like everybody else who has several interests, I’ve spent my life trying to juggle what I can do and how I will be able to live life as fully as possible. I’ve tried, where I can, to say yes to as many opportunities as possible, sometimes taking my viola to a maths class in order to go straight on to a rehearsal afterwards, or going to visit friends and taking running kit in order to participate in a race while I was at that location, or calling in on family with a carrier full of rats because I was attending a show somewhere nearby. I’ve also had days where I could have been occupied several times over and have simply had to decline invitations to play in concerts, run races, attend tutorials, go to dinner, be at a pet show, meet somebody, or whatever, because I’ve already been booked for something else and being in two places at the same time just isn’t possible.

Then there have been the other times – the times when the energy has run out. I’ve had these times all my life, and increasingly so as I’ve got older, where I pull out of something because I’m “ill”. And this “ill” has always been some sort of “mental illness”, or an indefinable malaise, bad enough to keep me away from whatever it was I wanted to do, but from which I seemed to recover after simply staying at home and doing nothing for a while. I know now, of course, that this “illness” was actually utter exhaustion and the feeling I often get before a shutdown, before I collapse, before my words vanish, and before my body simply makes me stop. I have no control over it, any more than I do over the violent meltdowns that occur if I keep overloading my system and continue “pushing through” and looking for more “inner strength” that just isn’t there.

In the past, I picked myself up after each episode of “illness” (shutdown, or in longer cases, burnout), and simply started building up my activities again. In the days when I worked I would return to work, gradually start taking on more challenges, and start to rebuild my career. By the time I had become so ill that working wasn’t an option I would resume studying, start to play more music, or do other things, because I’m interested in stuff, I’m interested in life, and I don’t actually dislike being out in the world doing things with people – I just find it really really difficult. But difficult is no excuse for not doing something – I’ve never shied away from the difficult!

And so we get to 2013, when I started to recover again after a particularly tough patch mentally. I started to do a few things, gradually stacking them up, with the idea that if I could build up my hobbies to an extent that I was leaving the flat every day and things were going well, then I might start to think about going back to work again. So I did more, and more, and more…

However, what you have to understand about this “more” is that it was “more” in my world. I knew plenty of people who were doing the same amount of music that I was, who also had full-time jobs, who also cooked dinner for their kids every evening, who were also studying for professional qualifications, who also went running in the mornings before work, and so on. I compared myself to them, and I knew that even with the amount I WAS doing, I was falling a long way short of a “normal life”. I wasn’t doing anything that wild by the standards of the people I was spending time with.

But I was getting tired. Really tired. Again. As soon as I got to any sort of level of activity that was approaching “interesting”, I started to suffer from this weird malaise once more. And, eventually, in August 2016, I fell to pieces.

And then I discovered I was autistic, and then I started to learn, and then it became obvious what was going on and why, every time I increased my activity levels, overtaxed my sensory system, or spent too much time with other people, I got ill.

So now I have to make a complete reevaluation of my life. I have to forget trying to “be like everybody else”, something that I’ve always found so incredibly difficult anyway. I have to try to kick the habit of turning up to a maths tutorial in running kit with my viola and a carrier full of rats, because far from being able to do a degree assignment and run a marathon and play in a concert and attend a show in the same weekend (which is probably more than most people would consider doing in any case), I am actually LESS capable than most people of doing all those things at once. Looking back, I’m not quite sure how I managed to do so much of so many of them for so long – sheer bloody-mindedness I think, and, of course, I’m now paying the price with a severe episode of burnout and rather dramatic loss of functionality. Maybe I can excuse “past me” for breaking “present me” so badly because “past me” didn’t know about autism, but there is now no excuse for “present me” to act so recklessly and break “future me” because I now have the knowledge and the responsibility to my future self to act on it!

So the life I rebuild from now will have to be different. If I thought juggling my diary was difficult before, it is now much more so, because I need to leave rest days between social events. I need to limit the number of concerts I can play in. I need to ask people for adaptions in some cases (which I absolutely hate doing, but the only alternative is to give up doing stuff completely). I have to decline invitations. I’ve already had to pull out of races, miss concerts I wanted to play in, miss meeting up with people I’d like to see, abandon my degree. I keep ignoring e-mails in my inbox that advertise things I want to go to, gigs, concerts, both listening and playing, festivals, events. I delete them and try to forget that I really want to be there but I just can’t go because I don’t have the spoons. I have to decline opportunities because they occur in the same week as something else I want to do, even though they don’t actually clash. During the next fortnight I have three things in my calendar and I know that I’ll need to sleep for a week afterwards just to get over the exhaustion.

And this makes me sad. This, for me, is one of the saddest parts of discovering I am autistic, of knowing, finally, what has made me so ill all these years, that my senses simply won’t cope with that much time out in the world, that every time I go to a party and chat to people I’m running my battery down, that if I want to go and stay away from home I’ll have to have special arrangements, separate eating if the dining hall is too noisy, not be able to contribute properly, fully, be “doing it right”.

I don’t much care if people laugh at me if I flap my hands in public. I don’t much care if folk think I’m “weird” (what the hell, I’ve been “weird” all my life and I’m used to it). I don’t mind if people have to correct me because I haven’t quite “got it” or if I don’t have very many friends (despite a glorious online presence, I see very few people in real life, because of the aforementioned energy problems). I don’t even care that much if I have the odd meltdown from time to time – they’re not much fun, but they finish eventually. I’ll find ways of compensating sufficiently for my poor executive functioning so I can survive, and I’ll eventually work through the anger and sadness at how my life was pre-diagnosis. And I certainly don’t care about nonverbal episodes or the absolute compulsion to eat nothing but white food for months on end – no big deal, speaking is hard work and white food is the best! Those things don’t worry me.

BUT THE FOMO DOES!

Yes, the FOMO bothers me very badly. The fact that I want to go and do stuff, but I have to limit myself if I’m to stay anything approaching “well”, and that I have to do that for the rest of my life, really does bother me. I have to turn down interesting stuff I really want to do – in order to spend the day on the sofa, bored out of my mind, scrolling through facebook and watching the telly because it’s all my stupid head is capable of doing. I have to regulate my life, I have to leave things I’m enjoying because I can feel my senses getting overloaded. I have to budget my spoons really really carefully or I’ll be able to do even LESS. That bothers me BIGTIME! I have lots I’m interested in, lots I want to do, and yes, even lots of people I want to see. I was already having to turn down opportunities when I was at my very best, and now I’m having to turn down even more.

Furthermore, I’m going to have to miss out on things such as drinks receptions, tea breaks, trips to the pub after concerts and so on. And these are the places where the networking happens. These are the places where someone comes up to me and asks if I’d like to play in a string quartet next month, and I won’t be there to be asked. I also fear that, having spent the last 3 years building up as a musician again, I’m now replying (eventually, in some cases) to say that I’m really sorry I can’t play in the next concert, and eventually people are going to stop asking me.

And the memes keep coming, telling me that autistic people shouldn’t be limited, and that great things can be achieved – but they don’t really work for me. I’ve had “no limits set” all my life and being autistic (and mentally ill, yes) has limited me anyway. When I’ve ignored the limits my own system has placed on me the effect has been catastrophic. This was not from some external agent, it was simply my own system breaking.

So now I have to learn to live a gentler life, to ask for help (which I hate), to decline invitations to things that I really want to do, and to limit myself because I know now that I can’t function like most people can, and that trying to make myself do so is really damaging to my health. Thus far, the FOMO is possibly one of the things that bothers me most about discovering I’m autistic, the knowledge that I will have to limit my life and as a consequence I will miss out on things I really wanted to do, whether they be concerts, races, studies, camping trips, rat shows, lunch with friends, dinners out, or whatever. I know I’ll be able to do SOME of these things and I will learn strategies to cope with many of them, but the need for rest in between is not something that sits easily with me. I’m not good at resting, I don’t like it, but I’m going to have to learn to do more of it.

Grrrrr!

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.

Career Snake!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Phased Process

62-2017-01-12-19-01-27I hope you will forgive a somewhat long and indulgent post today. Eventually I’d really like to produce material that will be helpful and instructive and so on, and I might even, once I have things straight in my own head, produce a book, or maybe even another, more “generally informative” blog. There are so many issues that are so important to investigate and to consider – everything from how best to nurture autistic children, through to how to support those even older than I am who make the discovery that they are autistic; a whole range of traits including communication issues and sensory sensitivity and executive functioning and so on; and a huge amount of discussion to be had on all manner of other issues that are only just finding their way into my head and I can’t even quite find the words for yet.

For the time being though, I’m still in the process of trying to get my own life sorted out, and some of these writings form part of the process. I currently have no support from the official services at all, no counsellor, no therapist, nothing, and so I’m aware that I sometimes use this space in lieu of such support. So some of what I write might just be pure waffle that I needed to write somewhere and here was as good a place as any. Some of the time I’m just trying to get things straight in my own head.

In the last week or so I’ve noticed things have changed again. Since the appointment date was fixed for the next assessment (my third try at getting a formal autism diagnosis after the first assessment was stopped by the assessor and the second one was cancelled) I’ve become noticeably more anxious again. My appetite has plummeted, having recovered somewhat, and I’m finding sleep less and less easy again.

However it does feel different from the last time I was waiting for my appointment, for several reasons, and I’ve been trying to understand why. I’ve also been looking back over the last six months, which seem to have comprised a series of “phases”, all of which have felt slightly different, and, I suspect, are part of the balancing process as my autistic neurology comes to terms with discovering, er, my autistic neurology!

The irony of discovering that my head isn’t very good at coping with change by discovering that I have the sort of head that isn’t very good at coping with change and having to cope with the change that ensues from that discovery is not lost on me!

So, we go back to July 2016. Back to the days of “normality”. Back to the days when everything felt ordinary, much as it had done for most of my life. A knowledge that I wasn’t well again and was possibly heading for another breakdown. A confusion as to why I couldn’t get my act together. And a general constant low level depressive mood and anxiety that I was so used to that I didn’t even notice it. I had a figure “zero” on my mood chart, meant to indicate my “norm”, what I regarded as a euthymic mood, but, in retrospect, it was far from “normal”, just what I was used to, as I eventually realised a couple of months later. During those times I would wake each morning feeling the usual struggle, the usual wonder what the point of it was, and the usual knowledge that everything was difficult and hard work, but that was just the way it was and things had to be done. That was normality.

And then we get to August, and going away from home. And my mental health (as I assumed at the time) starting to disintegrate. And, despite the few rumblings earlier in the year and a general “bit eccentric” sort of idea in my head, the “polite disbelief” at the initial concept of being autistic, exacerbated, I suspect, by me not really knowing what being autistic actually meant. I had no more knowledge than most of the rest of society at the time, possibly even less, owing to not having any children and being so uninvolved with the world. But by this stage I felt so absolutely dreadful that I was prepared to listen to almost anything to try to work out why my life kept going so very very wrong, and when you find yourself, as a 45 year old, behaving in a way that would be more naturally associated with a stroppy child and you have no way of controlling it or stopping it, then maybe it’s time to try to find out why.

So there was this initial feeling of disbelief. And also of the notion that I probably wasn’t actually really genuinely “autistic”, but just had one or two traits. I was one of those folk who was just a bit sensitive to life and because I was so mentally ill I just didn’t cope very well. I didn’t think, initially, that I would ever actually define myself as autistic, but saw the suggestions as merely an extension of eccentricity. Again, I still didn’t really understand the nature of the autistic spectrum, and neither did I have the first clue how many of my “eccentricities” would actually start to be revealed as autistic traits as I started to research.

And then I read the book with the list of traits mentioned in The Discovery. And started to take things somewhat more seriously. And went from “this is a side issue that might be useful to be aware of but things will get back to normal soon” to “mind blown, this is my entire life turned upside down”!

And the “polite disbelief” turned to “polite belief” turned to “******************” (there is no word that adequately describes suddenly discovering, after 45 years, that your entire life has been governed by your having a different neurology from the majority of the population, that you’ve been fighting all your life, and that you’ve discovered all this in a matter of weeks and your entire world has completely changed)! And there was huge huge huge shock. And even more huge shock as I started to research just how MANY autistic traits I had, and started to discover about all sorts of things that I thought were just me, weren’t. The whole “autism nicked my schizzle” phase!

And I went from waking up each morning wearily wondering how much more of this difficult life I could take, to waking up (when I managed to go to sleep at all) with my heart pounding so hard I thought it would actually jump out of my chest and this word “autistic” just swimming, almost meaninglessly, round my head. The whole sense of shock and disbelief and whatonearthisthisaboutthen still raging through my system. A bit like when someone dies and you get those few seconds each morning before you remember and then you suddenly remember it all over again and your system goes into shock once more.

And by this time it was early September. And I was struggling to cling on to anything normal at all or to think about anything other than autism, and my Amazon basket was full of autism books and I couldn’t eat or sleep or do anything because my whole system was so utterly overloaded. I went through lists of traits over and over and over. Read blogs, books, anything I could get my hands on. My entire world became about autism, almost to the exclusion of everything else.

And hardly anybody knew what was going on. My husband. A handful of friends. The whole thing seeming so utterly implausible that I couldn’t possibly mention it. I was trying, even, to work out how to even comprehend that I could ever even imagine that I really was autistic. It was surreal, like I was on some sort of weird drug that made the world feel like a total dream. Shock shock shock. Huge shock. What? Me? Really? Over and over. This shock. So obvious. So so obvious. But such a huge shock. Why did this take so long? What now? What even is it all about? My world collapsing.

Then I went to see my doctor, my GP. And the minute we mentioned the word she said “Of course!” and it was totally obvious to her too. And then I entered this time of huge relief, and we started to go back over my life, over 4 decades of memories of stuff happening that had never been explained, and suddenly it was all explained. And I started to chat to a very tiny group of people, and started to unpick my life and started to work through it all. And the feelings kept coming, and I tried to describe them in Various Feelings, and we started to wait impatiently for the formal diagnosis to arrive.

And for most of September and October I hardly slept. And hardly ate. I spent the night times, slightly bizarrely, googling pictures of goats and posting them on my facebook wall. My husband brought me food each day and I nibbled at what I could, which wasn’t very much. My system was in such shock that I could barely function. I cancelled almost everything in my diary as my system just started to close down. I realise now that this was going into burnout and all my energy had just gone. My life seemed so totally crazy and totally different. And I kept wondering if anything would ever feel even vaguely “normal” ever again. And to top it all, the hot water broke in our flat and our living conditions descended from “chaotic” to “borderline disastrous”!

Oddly though, around September time, something else did happen which showed just how much of a toll the masking had been taking. Although I was in a really really strange state, the general level of depression lifted massively. Simply knowing, and understanding, took a whole level of depression away. This, I suspect, was the depression caused by acting, by suppressing who I really was, and had been with me for so long that I didn’t actually notice it was there until it lifted. There was also this sudden feeling that I could be gentle with myself and could stop the frenetic pushing to do everything and to be everything to everyone and to achieve achieve achieve, which had been the cornerstone of my life.

And then I discovered that if I stopped trying to push in that way that I could let myself relax in a way that I hadn’t done before and that if I stopped trying to sit still then my body moved in ways that society had told me for years were strange but from the inside felt totally right. And I spent up to two hours a day rocking and bashing myself on the sofa and all sorts of things emerged from me (I’ll do a post about it sometime) that had been there all along, hidden, just waiting under the surface to be allowed out. I discovered that even after 4 decades of learning and suppression, all my autistic behaviours were there and that all that had happened by me not flapping my hands or by making myself cope with sensory overload to appear “normal” was that I’d been getting progressively more damaged and ill and had sometimes used maladaptive strategies such as alcohol to try to deal with the anxiety.

And all through the autumn I gathered evidence for the assessment, which was set for the end of November. I called my mother and learnt things about my early childhood that I hadn’t previously know and which provided yet more evidence for the “autism hypothesis”. I read book after book, all of which confirmed it over and over and over. And anxiety was heaped on top of anxiety. And the only way I could settle at all was to drink and stim (note: do not inadvertently flap hands while holding a glass of wine – it doesn’t end well for the carpet or the wine)! And there were so many other things going through my head – sadness and anger and relief and excitement and things I’ve written about before and still can’t quite explain properly.

And then the first assessment came and the ensuing disaster plummeted me into crippling depression at the start of December (the full story is in part B of the Blog Guide). I had a series of long shutdowns and episodes without speech, and eventually the spell was broken and I went from no sleep to oversleeping and gradually starting to eat again as my body started to try to repair itself. That phase is the one that has recently ended. And then I made the decision to go public about being autistic and started this blog.

At the start of December I wrote about how Time Stood Still, and I was still in a state of disbelief and still felt that I would, at some point, wake up and it would be August again and I would just have had a really strange dream. I’d gone from disbelief, to tentative belief, to huge shock, and massive relief, and lifting of long-normalised depression, and enormous anxiety, to crushing devastation and invalidation, to starting to fight back, and still my head wasn’t really there, wasn’t really prepared to believe I was autistic without a diagnosis.

But things are different again now. Partly because it is a different year and we have been through the annual time of the short days and I am now, just occasionally, starting to notice the outside world again. Partly because I survived the very very bleak times following the first assessment. Partly because I am now publicly autistic and the reaction to my disclosure has been so overwhelmingly positive and accepted that it has gone a long way to help with the damage done at the first assessment. Partly because I have now learnt so much about autism and am finding strategies to find my way through and have started to engage with the autistic community and to discover how many of my own issues are common to other autistics. Partly because I am not now viewing the forthcoming assessment as a definitive point – I’m aware that getting a formal diagnosis might actually be a long and arduous process and from what I have read, this is not unusual in older people, particularly those assigned female at birth. Partly because there are indications that I might be emerging to some extent from burnout and I do have slightly more functionality than I did a few months ago. Partly because I am starting to learn what my autistic traits are and am learning to work with them rather than fighting against them.

But possibly mainly because I am now writing about being autistic and producing my own narrative to help with the process of discovery (and occasionally writing long indulgent posts like this one). I am learning to talk about it in a way that I would have found unthinkable back in September when even typing the word “autism” into a search seemed so alien and scary that I’d have to go for a little lie down afterwards to recover. I am finding out that going through this huge range of emotions from ecstatic jubilation to suicidal depression is “absolutely normal for the newly-discovered middle-aged autistic” (and probably newly diagnosed autistics of all ages and, to an extent, their carers too) by continuing to read. And, I’m starting to think about a way forward and very very gently getting back to one or two things that, to me, signify “normal life”. It’s slow, and the path is very wobbly and up and down, but it is going, gently, in the right direction.

None of it is particularly easy. And my autistic brain is still fighting furiously with my knowledge brain as they try to reach some sort of equilibrium in my head and sort out what on Earth to do about everything. But I sometimes think that they might, eventually, find some sort of way of working together.

And in the meantime the only thing to do is to accept this latest phase of anxiety regarding the assessment and to cope with it as best I can. I don’t know how many more phases there will be to go through before life achieves some sort of “new normal” and neither do I know when or what that will be. Maybe I will need to write more “head sorting” material in the future in order to make sense of it all and I’ll have a whole new analysis of the process in a few months’ time!

This blog is an interesting beast. No matter how much I want to write about some things and no matter how much I plan, sometimes my head just needs to write what it needs to write.

And letting it is part of the process of discovery!