Still Very New

A year ago
Things had started
To go wrong.
Depression maybe?
Anxiety
Growing fast.
Things had not been right
For several months.
I didn’t know why.
Autism was not
Even considered.
I was just
An anxious eccentric.

Ten months ago
People started
To suggest that I might
Be autistic.
Which, I have to admit,
Was a bit on the weird side
Because as far as I knew
I was just me.

Nine months ago
After a bit of research
And discovery
And, well, if I’m honest,
Having my mind blown somewhat
By the whole concept
And
In the face of so much evidence
That to deny it
Would be a supreme act
Of illogicality
I accepted
And I wrote
“I am autistic”
For the first time.
And started to believe
That maybe
All my failures
Were not my fault
And I wasn’t lazy
After all.

Seven months ago
The first assessment.
Disaster, meltdown, damage.
Invalidation.
Despair
And serious thoughts
About whether I could even
Go on living.
My whole identity
Fallen to pieces
My whole life
A pointless waste.
Feeling guilty
Simply for
Breathing the air.

Six months ago
I had started to blog
And to engage
With other people.
Figuring that even
If everyone thought
I was a total idiot
Then maybe, just maybe,
That was better
Than being dead.
My logic being
That being a friendless idiot
Has potential for reversal
Whereas being dead
Does not.

Five months ago
A second referral,
Elsewhere.
We had to work for it
Quite hard,
Never giving up.

Four months ago
DIAGNOSIS!
Officially autistic.
Life changed
For ever.
Even though
It was already known.
I needed
Confirmation
Validation.
Big relief.
Mysteries solved.
A new confidence.
New hope.

Two months ago
Life gradually improving.
Slowly.
The first signs
That maybe
Burnout
Wouldn’t be for ever.
Acceptance
Learning
Gently starting
To rebuild
My shattered life.

And now
I continue to oscillate.
Part of me wants
To be an expert
An advocate,
And to learn
And educate
And debate the issues
And to be a confident
Articulate
(Most of the time)
Authentic
Autistic.
It’s not very difficult for me
To behave in ways
That are obviously autistic
All I have to do
Is stop trying not to!
But
Part of me still believes
That I don’t have the knowledge
Or abilities
For all of this
And that I’m out of my depth.
Because
I’m just a small person
Trying to figure all this out
And sometimes
I wish life
Would just
Get back to normal.
Though, to be honest,
I’m really not sure what “normal”
Even means any more.
Why is this all happening
To me?
I do not have
All the answers.
I just want to hide.
It all feels so uncertain.
I feel insecure.
Not confident.
Is the confident autistic
Yet another act?
My identity continues
To wobble
On its axis.
Trying to sort what is
Genuinely me
While maintaining
A person
Who can survive
In society.

Balance.

Difficult.

So I look back.
Two months
Four months
Five months
Six months
Seven months
Nine months
Ten months
A year

And I remind myself
That autistic brains like mine
Need time to cope
With change.

I have years of lived experience
I learn fast.
Yes.
But I also struggle.
And I need time
And space.

Looking back
At just how much has happened
In less than a year
Is a good reminder.
That I don’t have to have
All the answers
Yet
Because, for me,
All this
Is
Still
Very
New.

Hand Flapping

I wrote the words below (in italics) around eight months ago – before diagnosis, before forms, before I had any interaction with autistic communities online, right back in the early days of the “autism hypothesis” as I was then calling it. At that time I’d only just contacted my mother to start to ask about my early childhood, I’d heard the word “stimming” but didn’t really understand it, and I had no knowledge of autistic burnout or realization that I was experiencing it and had done so before.

I was yet even to receive the forms from the triage service or do any autism “tests” beyond the online one that I mentioned in The Discovery. I was still only just acknowledging that I even WAS autistic, and at that point I was only talking to a very small number of people about it and really only had Google and a couple of books to help me.

At the time I wrote the words I remember being really freaked out by them, even though I’d felt the need to write them. The whole concept of “just letting stuff happen” was so alien to me, having spent my entire life fighting to be “in control” and I was right at the start of the process of discovery. I had only just, a few days earlier, typed the words “I am autistic” for the first time and they still felt very foreign and strange and the whole notion of me being autistic seemed seriously wild – I didn’t spend a few years wondering or suspecting that I might be, as some people do – I’d gone from completely clueless to almost certainly autistic in the space of only a few weeks and my head was still reeling from the experience.

I didn’t even initially discuss them with either my husband or the friend with whom I was most closely corresponding about the possibility that I was autistic. I remember sending a rather coy facebook message to that friend saying I’d discovered something, but, initially it seemed too radical to say what – I’ve come a long way from then to now and my perceptions and levels of confidence have changed so much that I’m now publishing the words, which I couldn’t even send to my friend back then, openly on the internet!!!

But right from the off I knew I wanted to investigate the whole thing thoroughly. I wanted to experiment, to find out just what was going on. It was already obvious that the jiggly leg and the constant sitting with my legs folded under me and the gentle rocking and so on were likely autistic things and so I deliberately set out to learn to listen to my body and to what it wanted to do and to allow myself to experiment to see what happened.

Had I grown up knowing I was autistic and been part of any autistic community, this stuff might have been so commonplace in my life that it wouldn’t even have featured as a “thing to discover” but to me it felt new and big and important. I remember, much later, reading an account from another late diagnosed person saying it took them 6 months from diagnosis to reach that particular point. It took me only a few days from the point that I started to accept that I was autistic!

But I was deliberately experimenting. I am also pretty lucky in that I’m not the sort of person who feels shame about lots of stuff – I don’t have a deeply ingrained sense of “this is wrong” because I’ve always lived a somewhat random life, rather a long way from the middle of the “bell curve”! I knew by my teens that I was never going to be one of the popular “normal” ones and there’s no doubt that as I’ve got older I’ve increasingly adopted an attitude of “if they don’t like me as I am then I’ll just move on and not bother about it”. I have plenty of folk who do seem to be amused or entertained by me enough to stick around and whom I find interesting to be with so it’s not a big problem.

But, internally, this was for me, a big milestone, a big thing for me consciously to rediscover. And I remember, having typed the words “my autistic body” (perhaps an odd thing to type but it was what it was) looking at them with a mix of utter “this is so freaky and odd and new and scary and but ME?” and total “this is so comforting and reassuring and exciting and wow can this really be true” all at the same time.

September 2016

So, I’m staying overnight at my friend’s. I wake. It is 4 in the morning. When I wake I am overwhelmed with anxiety. Understandable. I’m away from home. I had orchestra. People. I talked a lot about autism to my friend yesterday afternoon and evening. My life is in such a period of upheaval and learning and turmoil. The revelations about my 4 year old self are still shocking me and rebounding inside my head.

I feel sick. Really really sick. I have felt this way here before. I have usually put it down to a large meal in college or too much alcohol. Neither of those is true for last night. A fairly small supper (I have learnt to eat small when things are unfamiliar because I know being out of normal routine is often stressful and makes me feel anxious and sick, so less food offsets the feeling).

Usually at this point I would try to keep calm and lie still. Breathing exercises. Mindfulness. Sometimes it works. But often I cannot get calm. The sick feeling rises. As I am emetophobic I get into a feedback loop. Sometimes I manage to fend it off but spend the next hour or so lying there feeling shaky and drained. Sometimes the worst happens. I end up in the bathroom and return, tearful and traumatised, to bed, where I might then drift into a troubled sleep, but the experience stays with me unless I spend the next few days working on blocking it from my mind.

Since it became apparent that I am autistic (there, I said it again) I have been experimenting. I have never known why I sit on the sofa at home and gently rock, but I do. It is calming. Maybe there is more in me. Something else. More long-repressed behaviours. I know I always fiddle with things. My hair. Pens. Cords. But maybe there are other things that are part of me that I am yet to discover.

I lie in the bed and decide to try something. To stop trying any sort of control over my body and mind and see what happens. My body starts to move. Rhythmically rocking backwards and forwards. It feels right. Then the strangest thing happens. I want to flap my hands. Really really want to. My arms emerge from under the covers. My hands begin to flap, fast, furious. I don’t know for how long, but the nausea and sick feeling subsides. I calm. Tears run down my face. I know I am going to be OK now. I flap a bit more, just to check. But I am calmer. The anxiety is reduced. I finally lie still.

I have heard mention of hand flapping. Has that found its way into my mind. Am I “trying” to be autistic, to prove something to myself? Au contraire, I was actually not trying to do anything except what my body felt it wanted to do. It felt natural. Normal. Although massively at odds with everything I have learnt from society over the last 45 years.

I wonder if my particular flapping is an autistic thing. So I grab my phone and Google autism hand flapping. My phone knows how to spell autism these days. I find a video of a man demonstrating flapping behaviour. It looks right. I read on a website that autistic children flap their hands and adults may go back to the behaviour as a way of relieving stress and anxiety. I don’t know if I am going back because I don’t know if I ever did as a child. Maybe so, but if that was the case I was almost certainly told to stop. Suppress. Do not exhibit abnormal behaviour. Nobody would have known back then what it meant.

I am slightly creeped out by the experience. The sense of calm the flapping induced was profound and remarkably quick. It clearly stimulated something that stopped the sick feeling, stopped the acute anxiety and stress. I feel very strange about this. I know it is an odd behaviour. Not something I have done in this way before. It was what my body wanted to do. And it worked.

I wonder what will happen over the coming weeks. As I come to terms with my autism what else will be revealed? I find the term “stimming” strange and unfamiliar. It was not a term I knew until very recently. Again, I worry that I am making myself autistic to fit the model. But every time I return to the fact that I have been autistic all along. It is not that I fit the model. It is that the model fits me. That I have found myself. Discovered needs in myself that were hitherto hidden. Years of lying in unfamiliar beds at night feeling sick. And I didn’t have a way of dealing with it. Now I do. That was what my body wanted. So that’s what I did. My autistic body. My differently wired head. My new life. My new start.

I am 45 years old and I am at the very beginning of my journey of learning to live like me. I have had fleeting moments, over the past week, where I have thought “when will life return to normal”. I know that old normal will never return. Yes, there is a part of me that is deeply unnerved by this whole autistic world. It’s so new. It has all happened so fast. Where is my old familiar life?

The old life is gone. I would not want it back.

***

Two Days Later

I have become a hand flapper. It has become important to me. I also like to rock, and to do things with my fingers, waggle my feet, bash my legs against the sofa back, and, of course, allow my leg to jiggle, rather than making the effort to stop what is often involuntary movement.

I was flapping tonight. Not because I was feeling particularly bad, but just to keep myself calm and to explore further the effect it has on me. I flapped for slightly longer than before. I felt a feeling in my fingers that was familiar, and pleasurable, and special. And it triggered a memory from long ago, very long ago, of the same feeling and I realised:

I. Have. Done. This. Before.

The realisation hits me. I did this as a child. I wonder why I stopped. Did someone tell me to stop waving my arms around? Did I gain awareness that other people didn’t flap their hands and as I was learning how to live by copying and observing I stopped? Did some kid at school bully me for it?

I wonder when it was. But I know now that I flapped my hands as a child.

Mind continues to be blown by all this stuff.

Breathe for goodness sake, breathe!

It turned out that I hadn’t just been flapping my hands when I was younger. As soon as I started to relax about it and consciously allow myself flap in front of my husband he said “Oh, you’ve always done that – though not quite as obviously as now”. Things I’ve always done with fingers and wrists when trying to make decisions or when stressed turn out all to be part of the same thing, but just on a smaller scale. I’ve since discovered that there are all sorts of times when I flap my hands, and these days I often hardly notice. Sometimes it’s when I’m happy about something, sometimes it’s for anxiety relief. These days I generally just go with it!

And, like so many autistic things, it possibly looks a little unusual from the outside. My husband (who also flaps his hands from time to time) frequently tells me I look like a T-Rex (I’m totally cool with that – I was a mad dinosaur fan as a kid and am still somewhat interested in them), and I suspect that some folk might find it a bit odd, but from the inside it’s just a natural form of expression and something that’s now very much part of my life.

The only thing I do have to make myself consciously remember from time to time is not to flap my hands while I’m holding a drink – that doesn’t work out well!!!

Storm Clouds

It feels as though storm clouds are gathering in my head these last few days. I’m not sure why, and I can’t work out if there’s anything I can do about it, but I have that feeling that I’m building the sort of tension that will eventually lead to meltdown or shutdown. But not yet. Somehow the energy is yet to be released. Things are too controlled. Maybe, knowing I have a weekend of things to do out in the world means that I’m keeping control somehow. I have that feeling of wanting to cry, but not being able to.

It’s an unsettling feeling, though not totally bad. I don’t even think the overload in my head and the build up of emotions (many of which I’m struggling to identify for alexythmic reasons) is entirely negative. It’s just that I can feel a gradual build up. Of something. I’m trying to analyse what that something is. I’m trying to judge whether some sort of big stimming session would help. I don’t know. It’s a very edgy feeling.

This is the fifth attempt I’ve had at writing about it. What has emerged as a common theme in the first four attempts is that this state is a mixture of two lots of emotion. One lot could probably be called negative, and the other, positive. They are existing inside my head simultaneously, and both pouring these strong, but not totally identifiable, feelings into my system. I get emotions like this. I always have, except when too depressed, or taking large quantities of medication, which seems to blank many of my feelings out anyway. One reason I hesitate to take medication is that much of it takes away things that I value – my appreciation of music, my excitement in the world, and so on.

And so, these huge waves of emotion keep washing over me, and I’m trying to untangle them in order to deal with them. Maybe a therapist would help with this, but I don’t have one, so I’m trying to do it on my own. Although it’s becoming obvious from trying to write it down as best I can that the same things are recurring over and over and my mind is still trying to deal with them. I’ve almost certainly written about them here before, and I apologise for what is probably terrible repetition (my husband says that he is used to me saying everything 98 times) but it seems that this need for repetition, for reassurance, for rehearsing the same argument over and over is probably one of my autistic traits too – something I need to do to get things clear in my mind.

And so the negative thoughts:

The constant nagging knowledge that my life will be limited because I simply don’t have the productive energy that most people do because I’m using so much of my energy to cope with my environment and to process language. I don’t like being limited, but decades of experience have shown me that the consequences of not consciously limiting my life and of trying to “be like everybody else” are poor mental health and catastrophic burnout. I am furious about this. I do not want to have to limit my life, but I must, and I know I must. I have to learn to be gentler, and allow recovery time.

I’m still not fully able to explain to people what being autistic really means. I’m still encountering “yes, but we all get tired…” types of comments, and I’m not yet able to articulate in words that what I mean is something different and that I’m not on about it being the end of a long week and I just fancy a bit of a lie-in. I need to write a blog post about this, I know I do. It is nibbling at my insides (yes, it feels like that) and I need to deal with it. Ditto the current controversies about stim-toys and spinners. I have so many and various thoughts about the whole thing, but I can’t make them into words currently, and that is frustrating me.

And talk of schools and classrooms and so on keeps pulling me back to my own childhood, the door onto which I had closed, I thought for good, until last year, when it had to be forced open. And once it was open, it was really useful for getting my diagnosis, but it hasn’t brought back floods of joyful memories, but of a time when my main objectives were to stave off bullying, to learn to behave, and to achieve good results academically. I had no chew toys or spinners – so I chewed my tie and my jumper and I played with bits from my pencil case and got into trouble for doodling during lessons (among other things).

The late diagnosis thing still irks me. The fact that I had to get THIS broken before anybody noticed that I was autistic. The fact that I was born at a time in history when the world didn’t know about people like me. I’m still sad and angry and regretful at so much of the first 45 years of my life. I’m still furious with the mental health specialists who didn’t know. Today we talk about acceptance being preferable to awareness – even the most basic awareness 20 years ago of autism in those of us who were AFAB might have saved me so much heartbreak.

And here I am, a 45-year-old burnt out non-binary autistic, going through the menopause, learning who I am, trying to rebuild my life, and doing it, currently, without help from anyone except a husband and friends. And I often feel like I am breaking, like I just want to vanish off the face of the Earth, because my youth has gone, and I want to cry for all these things, because they’re still bothering me.

But the positive thoughts are also strong:

The relief at no longer feeling the pressure to be a high flyer. The knowledge that I have a disability (and yes, for me, it is disabling – there is much to be investigated regarding models of disability, but that is not for now) and therefore I can stop beating myself up when I don’t achieve what I thought I should be able to is reassuring. The knowledge that the levels of self-care that I need are now “permitted” is such a huge relief, so liberating, and even joyful. I don’t have to be some kind of superhero any more – I can built this new life and stop pretending to be someone I’m not.

Most people I know are being massively supportive. I’m hugely lucky to have most of them in my life. Far from being deserted by old friends, I’m still, even, making new ones, people who care enough to be interested, people who read this blog and who are helped, people who understand the difficulties, and some who do not but are investing their time and energy and are willing to learn and be caring and understanding. This makes what I could call “big feels” – I don’t have a better expression than that currently. Like so often these days, I just hope people know what I mean.

And though I cannot change the past or do anything about my childhood or its difficulties, I’m now massively enjoying allowing myself to explore the world that has now opened up of toys and things to fiddle with and things that I can buy for myself without anybody to tell me not to. I can sit and stare at my glow in the dark spinner until it runs out of glow, I can roll the ball around on my fidget cube for hours at a time, I can have all the toys now that I never had as a child, and because I am old and spend the majority of my time at home alone nobody will tell me off for doing these things. I am making up for lost time in a big way, finally releasing all the bits of me that have been hidden all these years.

And the fact that the diagnosis has come at all, even this late, is still enough on its own to make me cry with happiness. The relief, the liberation, the knowledge of who I am and why I am and how I am. The permission to be something other, the explanation of why I’ve felt as I have all my life, and the solving of hundreds and thousands of mysteries from the last 45 years. The letting go of the old expectations, the shift to a neurological identity and a gender identity that feels properly comfortable to me, rather than one I was taught was the case. The hope that I will eventually recover from this burnout and will eventually get through this phase and that life will be better than it ever has been, and that I’ll eventually build a life that will be right for me.

And part of what is causing these emotions feels like some sort of huge “sigh of relief” from my entire being. I read about labels and words and why do I need the descriptor “autistic” if I know who I am. For me, I needed that descriptor to SHOW me who I am. Learning about what it means to be autistic is teaching me how to be who I am – because after 4 decades of acting roles, my real self has become somewhat obscured and needs a little help to emerge. I’ve had a lot of training to be someone else. I have a lot to discover. The minute I knew, and I allowed myself, and I learnt for the first time in my life to follow my instincts, things felt very very different.

And each time I’ve tried to write about this, these simultaneous bunches of feelings keep emerging, over and over again. Not even oscillating, like the states described in my earlier post, but together. Sadness and anger and regret alongside relief and liberation and happiness.

And the word at the end of every piece is still “autistic”, as if I’m still trying to make my head accept it fully, embrace it fully, and be able to go out into the world and live it fully. I want to do that, so very much. I know that it will not always be easy – but I do not shy away from difficulty and I never have.

Even writing it all down like this has actually changed how I feel, released some of the energy that I had when I started typing around half an hour ago. I’m calmer. The storm clouds have rolled on past for now. They will be back. The next meltdown and next shutdown will happen at some point, but typing everything up like this has had a healing effect for now, sorted things out a little. If anyone’s still reading, then thank you for indulging me. It has helped.

Losing The Words

I have known two things all my life (or, at least, as long as I’ve been old enough to know anything at all, which is probably somewhere around 40 years or so). The first is that when I get really really angry (as opposed to just very angry), I stop the shouting and the noise, and I show my anger by being completely silent. The second is that when I’m really really really tired (as opposed to just rather worn out and wanting to go to bed), I am also totally silent and I need to get away from everyone and just curl up in a corner and go to sleep.

These two extremes, the furious anger leading to silence, and the utter exhaustion leading to silence have always been part of my life. The first situation, the extreme anger, has always been put down to stubbornness, stroppiness, and a general wilfulness and unwillingness to compromise or to say sorry. I remember numerous occasions where I was utterly steaming mad and my reaction was to scream and scream and then to just run away and go and be completely silent by myself. I recall an argument with my father, sometime in my teens – at the time I kept a diary, and I remember writing up the experience afterwards and being frustrated that “this was my Dad, who usually understood me and was so like me and I opened my mouth to try to talk to him and no words would come out”. I can picture the scene now, me lying on my bed in my parents’ house, following some furious argument, the subject of which I cannot remember. I just remember feeling really really bad and that I couldn’t make any words come at all, about anything, not to apologise, nor to continue the argument, nor anything.

Equally, there have been times throughout my life when I have collapsed with total utter exhaustion. My mother and I were discussing these times recently, which have been known since my early childhood as “zonking”. She cannot remember exactly when “zonking” started, but she thinks that it was sometime after we moved house when I was 5 years old. I remember “zonking” as a child. I remember the absolute feeling of exhaustion, of being unable to move, of, sometimes, literally, lying down wherever I happened to be at the time. If I tried to keep going I would be sick, and would feel like I was terribly ill and had something terribly bad happening to me. A couple of months ago when I was discussing these episodes with my mother, she said that she remembers how my eyes would glaze over and I would go completely silent and unresponsive and I absolutely refused anything at all to eat. She said that the first few times it happened they were rather worried about it because it seemed so strange, but that they observed that if they simply put me to bed and left me with a glass of water in case I got thirsty then I seemed absolutely fine again the next morning. So nothing was done (and, to be honest, nothing really could have been done – if they’d taken me to a doctor in the 1970s and described these episodes then the doctor would almost certainly have been as mystified as they were).

And “zonking” was just part of my life and it always has been. I had these phases where I needed to go to bed and be silent and alone and I couldn’t interact with the world and I couldn’t do anything about it. It often occurred at times when I’d been out a lot and very busy, or when I’d been to parties or was away from home. It happened throughout my early adulthood and I simply went home from wherever I was and put myself to bed. It happened after I was married and I simply told my husband that there was this thing I did called zonking and that there was nothing to be done but to leave me to sleep it off and I didn’t know why it happened or why I was always silent, but I just accepted that it was a thing I did.

And for over 40 years I was a silent angry person who zonked from time to time!

Until I started to investigate autism. Until I ran away to hide in a shed in the summer of 2016 and didn’t let anyone know where I was for a while because I knew I couldn’t interact with them. Until I told someone by facebook message not to send any food over to my tent yet because I knew I wouldn’t be able to thank them for bringing the food. Until I realised that the times when I had this severe exhaustion were times not when I WOULDN’T talk, but when I actually COULDN’T talk. Because I started to try, even though I didn’t feel like it, and I found that the words were gone. I hadn’t previously attempted to talk at these times (a few “arguments” aside, when I just assumed that being cross rendered people “speechless” and that was what was happening to me) because I’d just run away or gone to sleep or cried or whatever. But as I started to experiment and to see what was possible, I realised that there was a reason I’d been running away or taking myself to bed or whatever all my life.

My. Words. Were. Gone.

Since I discovered this I have been doing experiments, such as described in Can I Sing? I have tried to talk to see what happens – I can make sounds perfectly well, but I cannot make words. The revelation, after over 40 years that I have been having nonverbal (or, probably more accurately, nonspeech, though I believe nonverbal is the usual term) episodes all my life, is quite startling.

And, although being unable to speak might, at first, seem odd from the outside, and, in some ways, can be frustrating because the world is so geared up towards speech, it DOESN’T FEEL BAD. In fact, what makes me feel ill, and sick, and distressed, is the effort of trying to keep talking when my words have gone. When I try to continue to be social and to act “appropriately” I start to get ill, as I described in Sudden Illness. When I let go of the speech, and just abandon spoken words, the nausea, the bad feelings, and all the illness feelings go away, and I can feel my system start to recover, either from the meltdown (in the case of the “angry silence”) or the shutdown (in the case of the “extreme exhaustion”).

I can also often feel the slide down into wordlessness. My sentences start to jumble and my speech starts to become unorthodox and to fragment (I’ll do another post about speech, and my different levels of speech sometime). After a while I become monosyllabic, and then, gently, the words just go, sometimes for several hours at a time, and even overnight. Although my written words can often be quite a big effort during this time and don’t always flow fluently, I am often able to communicate by typing written words when I am completely unable to produce speech, as I have described in Silence.

I can also feel the return. Initially the speech that returns isn’t totally fluent, and is a bit disjointed, with one syllable at a time. Then it gradually builds up until it is fluent again.

I am still exploring this. I am still discovering. I am still analysing my speech patterns and still experimenting. I know the feeling of being unable to speak rather well – I have been experiencing that particular feeling all my life – but I am only just starting to understand it.

Double Regret

The original title of this post, which I devised when my mood was somewhat lower than it is today, was “Double Mourning”, but I ditched it as being too strong, and, in fact, not really factually accurate. It also reminded me of those terrible articles, which I’m certain are supposed to induce some sort of emotion, where parents write of their “grief” at discovering their child is autistic. An autistic diagnosis might be a shock, yes, and it certainly makes one think rather hard about rather a lot of things, but it is not really about grieving, especially when the diagnosis is so early that the child in question can be supported to be their full autistic self and get the best possible out of their life with the knowledge of who they are. The child is still there and has not changed – leave the “grief” for those who are genuinely bereaved, whose children have died, been stillborn or miscarried, or were never conceived despite much effort.

However, I can understand that any autism diagnosis is a huge shift in perspective, and can alter expectations and so on. And when that diagnosis comes late in life, although it is, in many ways, liberating and validating and a huge relief, it can also come with a lot of regret that it wasn’t spotted earlier, particularly for those of us who have been disabled by our autistic characteristics and whose quality of life has been generally poor. I have spent much of my life fighting against my neurology, trying to be a person I wasn’t, because I didn’t know who I was, and the effort that has taken has been huge.

And, to add insult to injury, I have spent my life working at absolute maximum capacity the whole time, trying my very best to live up to the high expectations that others had of me (because all they saw was a decent set of exam results so I really was told I could do anything, which turned out not to be true) and which, as a consequence, I eventually had of myself. I lived in a world where a grade B was a failure, where I was expected to be the best, to rise to the top, to be successful and to settle down and have a happy and fulfilled life. It didn’t turn out that way – as I discussed in Expectations Gone.

So while I am not mourning, I am having to look back and deal with two lots of what I shall call “regret” and this is where my situation differs from that of the small child – had I been diagnosed at 4, my parents would have had to replan my future, but there would be very little past to look back on, analyse, and very little to regret about how my life had thus far been conducted. At 45 I now face having to replan my future, whatever there will be of it, but I’m also having to come to terms with the events of the past and how both my being autistic and my not knowing about it has impacted my life.

I cannot help asking myself the question “What if I’d been diagnosed at n?” where n is a number between 0 and 45. Maybe one day I’ll try to do a post that conveys some of my thoughts on this, although, obviously, the whole thing is a hypothetical exercise. It is, obviously, of no practical use, but it’s a way of me working through my past and analysing the effect that being an undiagnosed autistic for 45 years has had on my life. And, because of the sort of person I am, I’m given to such experiments because they interest me. And since I have nobody to talk to about them apart from my long-suffering husband, they might well end up here at some point.

So while I’m playing “autism bingo” (see Disparate Facts) and scrapping my old plans and making new (hopefully exciting) ones, on my more introspective days I am dealing with two lots of regret, and I am sometimes getting really really sad, and sometimes really really angry, and sometimes wishing that I had a time machine and I could go back and have another try at life, with proper knowledge of my neurology and permission to be myself rather than having to act the Strong Woman for so long. There is a part of me that feels that 45 is too late and that my disastered life is beyond rescue now – the lack of any family, the failure of all the jobs, the huge debts, the chaotic living conditions, the shocking mental health, and my current poor quality of life make me wonder if it’s even worth the effort. But there is also a part of me that is interested to see what happens next, and to discover where things go from here, and to find out whether I can build a life that gives me some degree of either success or pleasure, or if I’m really really lucky, a bit of both – I have a husband, an insatiably curious mind, pretty good physical health in many ways, and maybe a few decades ahead to do some interesting stuff.

So why am I regretting TWO alternative pasts? And what are they?

The first is the past that I would have had had I not BEEN autistic. Of course, it’s impossible to tell what a non-autistic version of me might have been like, because autism doesn’t work like that and I’d have been a completely different person, but, if I look around at those who had similar backgrounds to me, then many of them went on to lead very different lives from me. The smiling group photos of friends I see on facebook, the people who enjoy going off on trips together, the people who meet up socially in their spare time and so on. And, of course, there are the families and jobs and houses that many have because they’ve been able to work and make money and use their qualifications to build a life in a way that I haven’t. I know, by the way, that this is not the case for everyone, and also that there are autistic people who have succeeded with families, jobs, houses and the like, but I’m trying to work out the things that didn’t work for me, for which I believe being autistic might have been responsible.

The non-autistic life was also the one that, until 8 months ago, I believed I had. It didn’t even occur to me to wonder whether I was autistic or not, because nobody had ever raised the possibility with me. I believed that I had failed very badly at life, and I was fairly certain that with the amount of work I put in and the skills that I had, that it was rather unfair that things kept going so badly wrong. Of course, the paradox here is that, had I been a different person, a non-autistic version of myself, there might have been areas where I HAVE succeeded that I wouldn’t even have considered because they’re part of my autistic self. Had I been a good socialite at college, I might have got a less good degree because I’d have been in the bar chatting rather than in the library reading every single reference to every single journal article. Had I been good at team sport at school, I might never have spent so much time learning music and it would not have become such an important part of my life. Had I been able to hold down a job properly, I might never had the time to care for so many animals, and so on and so on and so on.

So a big part of this autistic discovery is, to a certain extent, to “regret” that I wasn’t “normal” (both words in inverted commas, because they’re the closest I can get to what I’m trying to say, and I know all the “yes but what is normal anyway” stuff and I’m trying to convey that I’m using the words because they’re the best I can come up with at this point). There is a huge regret that I didn’t find life easier and that I worked so damn hard and because my neurology is different, I didn’t get the same results for the same amount of work that other people did. But I’m not sure the concept of actually BEING neurotypical has much meaning for me, since I haven’t the faintest clue what it might be like. I’ve discussed with neurotypical people and heard about how they only hear the conversation they’re actually having when they’re in a room full of people, and how they can talk about things they haven’t rehearsed, and how they don’t feel sick when they go shopping, and how they feel happier running in groups and chatting, and how they think that a night out at the pub is more relaxing than staying at home doing advanced mathematics, but these things are so far from my experience that I really have no clue what it might be like. One of the things I’d really like to do is to find more neurotypical friends and really discover what life feels like for them, because it’s utterly fascinating.

The second alternative past that I’m “regretting” (again, I use the word advisedly), is the one in which I KNEW I was autistic. There is probably more to say about this, and about the consequences of having known, in a future blog post (the exercise described in the 5th paragraph above). I am certain that had I known what my neurology was earlier in my life it would have helped me no end, although I’m also conscious that it’s much more complicated than that because we have also to take into account the way that the world has changed in the last 45 years, so there are really too many variables to consider. A diagnosis of autism in 1975 would almost certainly have resulted in my future being limited by the perceptions of others, for example, whereas such a diagnosis for a 4-year-old now would produce a very different outcome. I also avoided any efforts to “cure” me with horrific therapies, though I was sometimes harshly disciplined when I had meltdowns, which were taken to be bad behaviour, my sensory needs weren’t recognised so I went through a lot of pain, which I learnt to normalise, and I stored up a lot of inner trauma and anxiety as a result of being bullied, struggling with friends, and trying to be “normal”. But I was able to use the skills I did have. The very things that meant that nobody was able to tell that I was autistic in the 1970s and 80s meant that I was allowed just to proceed with life and as I grew up people just got used to the idea that I was who I was, quirks and all, and, to an extent, I just learnt what was expected of me and did it the best I could.

I’d have liked to grow up with a diagnosis. I’d have liked my parents to have been able to access groups on facebook, to learn that I wasn’t being awkward, that I wasn’t actually trying to be headstrong, or picky with my food, and that I wasn’t trying to be bad, although I always felt I came across as bad. I’d have liked my schools to recognise that I was putting in lots of work, even though it wasn’t the sort of work that they were expecting, and I’d like to be able to look back on my childhood now and see it as a happy fun-filled time, but no matter how hard I try, I can’t do that. I see it as a constant learning process that required behaving well and doing well at schoolwork. I’ve heard people describe childhood as some sort of “carefree” time, but I’m struggling to think of anything like that in my own past.

But it was the 1970s. Nobody knew. And I forgive those who didn’t see how much I was struggling because they didn’t know what to look for and because I didn’t know either. It was just the way it was back then.

However, when it comes to adulthood, I have very different feelings. By the time I was in my mid-20s I was already very mentally ill. The masking that I’d learnt through childhood was already taking a heavy toll on me, and if I’d known in my mid-20s that I was autistic and had had the opportunity to learn what I know now then I believe my life would have been very very different and I’d be in a much better position with a much better quality of life than I have now. I’ll try and work out why that is at some point, and exactly what I would have done differently, partly because it might inform my own future and I can, I hope, stop making the same mistakes I’ve been making for the last 20 years, and partly because it might be useful for others, who are in their 20s and recently diagnosed.

What I do know is that I’m reading a lot of articles online about “late diagnosis”, and I read and read and read and it sounds exactly like me, and then the punchline comes: “and it was like this for the first 25 years of my life”!!!! And I sit there and think “25? That’s TWO DECADES AGO for me!!!” I feel old. I’m middle-aged. I’m in the middle of the menopause. My hair is grey (it is grey at the moment because I can’t dye it because I’ve destroyed my scalp too badly). Some of my contemporaries are grandparents. How is 25 LATE for anything? At 25 you have almost your whole life ahead of you. You have a maximum of around 20 years’ masking to undo, you can be YOU for almost all your adult life!!!

Now, of course, I realise that this is my perspective as a 45-year-old. And I am encountering people who are newly diagnosed autistic in their 50s, 60s, and even older. I’m sure a newly-diagnosed 70-year-old would look at me and think how young I am, how much opportunity I still have (especially with my relative physical fitness), and would ask me what on Earth I was complaining about. And, of course, they’d be right, that my lot in life is considerably better than theirs was in very many ways (though also worse in others – I believe there are ways in which some aspects of the past were more advantageous to autistic people than some aspects of the modern world – that’s yet another blog post for the future).

However, when I look back on my life and wish, desperately, that I had known I was autistic, the point that I really wish it had been discovered was somewhere in my mid-20s. This was the point at which my mental health took a huge nosedive, the point at which life started to become seriously seriously tough for me and moved from anxiety into severe depression and when the suicidal ideation became suicide attempts and I didn’t understand why things were so very bad. Had I had the knowledge about my neurology back then that I have today, I could have, instead of going through months of hard CBT to try to cope with supermarkets, realised that they did indeed make me sick and I wasn’t being pathetic and the answer was to spend less time in them and wear dark glasses. Instead of reading the guides to good mental health that told me to spend lots of time with friends because that would be good for me and forcing myself to go to the pub after rehearsals and so on, I could have gone home and saved that energy. I’ve spent a lot of the last 20 years PUSHING through, fighting through, being strong, making myself do the tough stuff because I looked around and everyone else could do it so I knew that I should be able to as well. But the cycle of push, get sick, fail went round and round, and in 20 years of mental health service use, nobody suggested autism. That, I really do regret.

I survived my childhood. I even did reasonably well academically. It wasn’t amazing, but it wasn’t the spectacular disaster that the last 20 years have been. I’m also now questioning how anxious I really am, and wondering whether the high levels of anxiety contributed to our being unable to have children, and if I’d allowed myself enough downtime and been aware of just how anxious I was, whether it would have helped. That, of course, I can only speculate, because it’s impossible to know. I am just coming to realise how high my anxiety levels have been all my life, but because they’ve always been that way, I’d never really noticed them. With my diagnosis has come a relief, a liberation, and a permission to relax and be myself that I’ve never felt before in my life. I don’t have to try to “achieve” any more, because I work on a different system and I have to operate by different rules in order to compensate for the way I perceive the world. Now that I do know, I can start to figure out what works and implement it. I can start to work on reducing anxiety, on planning a future that’s not based totally on striving to be the best or work the hardest, because those things aren’t suitable for me.

And I really do wish I’d known all this 20 years ago. The biggest regret I have is not that I am autistic (I’m not sure, in many ways, that that’s even a regret at all, because the notion of a non-autistic me simply doesn’t make any sense), nor in some ways, is that it wasn’t spotted in childhood (and getting the 2017 “diagnosis” for my 4-year-old self has, in many ways made peace with that anyway), but that I have spent a quarter of a century of my adult life not knowing I was autistic. THAT is the big regret.

And that’s the bit I’m most still struggling to come to terms with, the bit that needs the most work. I still need to do the thought experiments for “What if I’d been diagnosed at 40, 35, 30, 25, 20…?” I still need to work out how my own history intersects with my experiences in the mental health services, the knowledge of autism (particularly among those of us assigned female at birth), and I still need to work out where to go from here.

There’s not much I can do apart from keep going with it all. Reports from those who’ve been through similar experiences suggest it will take a year or so. I’m still less than 8 months post-discovery and less than 8 weeks post-diagnosis, so it’s not surprising I’m not there yet!

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!

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!