Packing

To return to the place
Where my old life ended
And my old self
Disintegrated
Into a million tiny fragments.

I messaged a friend
A year ago
And said
“It seems like I might have
Some sort of autism”

I laugh now at the terminology
And ponder what “sort” it might be
I’d quite like it to be purple
With a side order of cheesy chips
And a glass of beer.
Maybe also a beard
And nice eyebrows!

I digress

A tweet set me thinking:
Do I have a love-hate relationship
With this place?
I’m not sure.
I’m not given to loving
Or hating
Anything much.
They always seem
A bit strong
And the words are loaded
With overwhelm.

But

I got it.

The paradox in my head
About this place
At this time of year
After the events of August 2016…

Two words
Describe it
Perfectly for me

Supportive
And
Traumatic

The support of good people
I know they are good
My brain tells me
But they are still people
And
As always
With a crowd of people
I get that sense of
Disbelonging
That I always have.
No matter how much I belong
I never do.
And if I feel I might start
To be part of something
I get uncomfortable
And withdraw.

The trauma of multiple meltdowns
My life falling apart
The eventual admission
Of just how disabled I really am
And that to return
I need adaptions
I can no longer be
“A normal customer”
And I know the truth
About my life.
The eventual comfort
Of knowing why I can’t
Do what most people can.

I have nearly cancelled this trip
So many times.
Decided I cannot go.
Too much.
The risk of meltdown.
The inevitability of speech loss
In a place where face to face interaction
Is valued.
At what point do I just give up?

Apparently not yet.
Because I have started packing.
To return to a place of

Unsettling support
And
Reassuring trauma.

Where all the feelings get intermingled.

And the routine
Is simultaneously
Comforting and constraining.

The discomfort of becoming
Part of a community
Of never quite knowing
What to do
Or how to be.

But I am drawn back

Simple to say it is the music that draws me
But it is more than that.
Observing people.
Intrigue.
Maybe even as close
As I come to being
Part of a community.
Skirting the edges,
Watching from the sidelines
Because throwing myself
Into the middle
Breaks me too badly.

I cannot keep up the acting
Or make so many conscious decisions
Or remember how to chat
Or cope with the noise
Or concentrate that hard
On doing the right thing
Or on explaining
Why I am not doing the right thing
For days on end.
It is too exhausting.

Adaptions are being arranged.
Separate eating.
People knowing I am autistic
And need time out
To recover.
Disclosure not optional
For me.
Essential.

It feels strange.
After so many years
Of “just work harder”
To realise that I can’t.
And the only way I can do anything
Is with adaptions
To enable me to cope.

I feel sad that I cannot join in
“Properly”
But I have tried this
For so many years
And always the result
Is disaster.

Prior to my mask disintegrating
I could do 3 days
Before meltdown or shutdown.
Now it is more like
24 hours
Before I need to be alone
To recover.

But I have still not cancelled.
I am still going.
Facing things that terrify me.
But going to a place
I want to be,
Even so.
I said, a couple of years ago,
That if I wasn’t ill,
It would be perfect.
(I only knew myself to be “ill”
Back then).

It’s a place where the old, “strong” me,
The heavily masked me of my early 20s,
Would have flourished
(Although collapsed upon return)
But the me of now can barely cope
Because I am so burned out and mentally ill
After so many years of masking.

And now the place is imbued
With heavy significance.

Had I never gone there
Would I still not know I was autistic?

The question hurts my brain.

I cannot cope with the notion
That something involving people
Is so significant.

That makes me too vulnerable.

Part of me wants to stay away,
Forget.
Part of me needs to go back,
Remember.

Because everything changed.
My entire perception
Of my whole life.

It is all too big.

So I shall focus only on practical survival.
Arrangements.
Food.
Packing.
Loading the car.

I shall count socks
And think about jumpers
And try to organise things
As best I can
Because I know
My executive dysfunctioning
Means I will struggle
With the most basic things
After a short time.

Even the packing is a challenge
Right now!

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Doing My Best

So we have come to August. And to the month in which, last year, people started to suggest to me that I might be autistic.

Today is the first anniversary of me starting seriously to fall apart, to not cope. A year ago today I sat in the leader’s seat of a viola section and a remark made to me by the conductor was the last straw after three days of total overload and unknowingly masking furiously without a break and I sat, tears rolling down my face, hardly able to speak. I think I managed to say “I’m doing my best” and that was about it. I was broken. I’ve reviewed that incident in my mind hundreds of times, often berating myself for not being tougher or more grown-up, for not coping as I should have done, for not acting with sufficient professionalism, but eventually I’ve learnt that how I coped (well, didn’t cope) that day was completely out of my control and there was nothing I could have done differently.

At the time, of course, I didn’t know that this meltdown (owing to circumstances, I suspect, a quiet, inward-turned one) was the start of many more that would occur over the next few weeks, nor that it was the start of something that would change my life for ever. I just knew that I felt very very bad and that it was probably some sort of mental health issue. I assumed that I’d go off and have a little rest or something and then be back to “normal” and carry on with life as usual. So I put my viola away after the rehearsal was over and went to have lunch in the dining hall, shaking and terrified, and struggling still further with the sensory overload that I was so used to that I didn’t even know it was making me worse.

I got through the rest of the day, sort of, feeling wrong and dissociated, and trying to do what was expected of me, but the breakdown of my abilities had happened and was irreversible, and by the next morning I couldn’t work out how to dress myself, couldn’t get to breakfast, and I knew I was in big trouble of some sort. My ability to act “appropriately” had fallen apart, and all I knew was that I was a broken down mess.

Fortunately, those around me (and some with whom I was communicating online) were largely sympathetic, and some of them were also knowledgeable, much more knowledgeable than I was, about what being autistic actually looked (and in at least one case felt) like. A year ago today I was only days away from people starting to ask if I’d considered the possibility that I was autistic, having both witnessed my behaviour and listened to my accounts of how the dining room and the vast numbers of people made me feel. This, added to my long history of mental health problems was enough to convince them, and for me to have heard the suggestion from enough people to go away in investigate the possibility thoroughly and to find out what “being autistic” actually meant.

Life has never, of course, gone back to “normal” and I suspect this will be the first of several “it’s been a year since…” posts as the anniversaries keep coming throughout the next year. Had life gone back to normal, you wouldn’t be reading this blog, nor, indeed would many of you have ever encountered me. The meltdown of a year ago today set in motion a chain of events that led to the most life-changing year I’ve ever had.

A year on, I’ve learnt so much. And am still learning so much. I’m hoping that I’ll be able to go back to the same place in a few weeks’ time. I have already returned for a weekend (as I recounted in Going Back) and I’m hoping to be able to go for longer.

There are two ongoing jobs on my jobs list at the moment. One is to finish writing up my assessment for this blog (I’m doing my best with that too, and with responding to comments and so on – apologies that my brain is working on such extended timescales at the moment) and the other is to try to work out what adaptions I might need to get through a week of orchestral playing, living away from home, without completely falling apart. I went last year, as far as I knew, as a very broken neurotypical person (though I don’t think I even knew the word neurotypical at that stage so would never have described myself thus), but this year I’m going back as an autistic person still recovering from a massive burnout.

Which is a huge shift. After over two decades of progressively worsening mental health I’ve become used to the fact that I have “issues” and can’t function like most other people can, but it’s now evident just how disabled I am (and I am disabled, and by more than just society and expectations because my executive functioning is so poor and my ability to care for myself is sometimes almost non-existent – there’s another whole blog post to write about that sometime when I have the capability). And admitting that to myself sufficiently to ask for help is massive for me.

I’m still, also, very much in the process of trying to work out what adaptions I actually need. It’s already been established that eating in the dining hall is beyond my capabilities because of the immense sensory overload, but even then there are still further issues to consider and I’m only just at the start of working out what they actually are. I’m working on them as hard as I can, trying to be as helpful as possible to the people who are trying to help me in order that I can keep playing orchestral music in that environment at all. There will, I’m sure, be times when things still go wrong, and this will be an iterative process as I discover ways to cope in the light of the new knowledge. I’m also feeling a little guilty about needing any adaptions at all, having spent so long just trying to work harder to deal with all the problems I’ve had, but I now find myself in a position where I simply cannot work any harder. I’ve spent my life doing my absolute best at everything I’ve ever done, working as hard as possible, with the result that my energies are spent. My perception of myself is rapidly changing. I have moved from the stage I was at when I wrote Farewell Strong Woman and Expectations Gone, but there is still a long way to go.

As I said to a friend recently, if I say I “can’t” do something, I really genuinely can’t and it’s not that I just don’t want to. But even so, it’s really hard to adjust to asking for help (which I was never very good at) and my social skills and understanding of how other people perceive me are not sufficiently good to know when people are happy to help, and when they’re thinking that I’m just a pain in the arse and it might be better if I gave up trying to do whatever it was because it’s really beyond my capabilities and the adaptions are just too much trouble for people. That’s something I’m still trying to work out too.

What I do know though, is that life has permanently changed as a result of the events of last August, and that returning to the same place, even with the same conductor (which is somewhat scary) and many of the same people, is going to be a very interesting experience if I can manage it. The expectations I had of my future life a year ago are so drastically different from the ones I have now that it still sometimes feels like I’ve stepped into some sort of parallel dream universe and that I’ll wake up one day and life will be back to normal again and I’ll think that was a jolly peculiar dream!

But it isn’t a dream (I don’t think)! It’s a whole new life, a whole new way of viewing my entire life, right back to when I was a very very small. The old life had been stretched and stretched right to its limit (and beyond on several occasions), but that moment, just before lunchtime a year ago today, was when it finally snapped, and people were there to witness it and to make the suggestion as to WHY it had snapped. And from that point it wasn’t about trying to fix the old life, it wasn’t about continuing to try to be “normal” or taking the “advice” that I’d been taking for so long about what would help (and often didn’t). Rather, it was about starting again, with a new set of parameters, building a new life with a different perspective on the world.

And that’s something I’m still doing. A year on from that moment I’m still trying to understand and to rebuild my life – it’s very much a work in progress!

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!

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.

Different Language

08-2016-12-09-18-36-23Some of these blog posts are difficult to write. Some are emotionally draining and massively triggering – I’m working on one at the moment that I’m going to have to do paragraph by paragraph because it’s so tough, but I’ll get there in the end, and it’s a post that needs to be written, so I shall persist. Some are about things I want to say and the thoughts are all in my head in concept form but my words aren’t always in a great place so it takes a lot of effort to translate them into readable format.

Some, like this one, are difficult because I’m working at the very limits of my knowledge about a subject that I only started studying a few months ago and I’m still trying to work out what everything means and to construct my own verbal definitions of concepts that I instantly recognised from internal experience as soon as I knew what they actually were. I’m also still reading other people’s blogs and working out which ones I’ll want to share and so on – even blogging is something of a new world to me as my last efforts, years ago, were random and short-lived and I never really got into it in a big way.

I said in the post “Time Stood Still” that I initially called what happened to me at the end of the summer “some sort of mental breakdown” because that was the language I had available to me. That language, familiar to me from years of mental health struggles, diagnosed as anxiety, depression, and eventually bipolar disorder (I still believe these were not misdiagnoses, but they were only part of the full picture, and they are common comorbids with autism), is only partially accurate in my new changed world. I am now learning new terms, terms to describe things that have happened to me throughout my life, which I have only discovered since investigating autism.

What actually happened to me during late summer 2016 was that I entered a spell of autistic burnout. This is, apparently, not recognised by the medical profession, but is seemingly well-known among the adult autistic community in general, and those who are undiagnosed or hiding their condition in particular. I’ll try to write about it more fully when I have the ability to do so, but, for now, the best way I can explain it is that burnout occurs when an autistic person’s energy is exhausted, they can no longer hide their condition, and they go into some sort of extended shutdown and their autistic characteristics become very pronounced.

I believe that this is the second time in my life that I have been in autistic burnout. The first was in 2001, when I was 30. However, this burnout is different from the last, because during the last one I was additionally in a state of nervous breakdown and severe depression as a result of bipolar disorder, so that will have hidden the autistic traits somewhat. I also lived alone at that time so there was nobody around to observe much of my behaviour. And, of course, nobody knew about autism, still less burnout, and at that stage I wasn’t even diagnosed with bipolar disorder – I was just given a packet of citalopram and signed off work for a while, as had happened during a previous breakdown a few years earlier. I eventually saw a psychiatrist who sent me for group CBT for anxiety, and I gradually learnt how to live in the world again, though that was the point at which the high-achieving, high-powered me disappeared from the world. I got back to work, but never to the level I had before, and I never lasted very long in any job – it’s now obvious why.

Looking back, I can now very obviously see the similarities and differences between burnout and breakdown, and can even separate out the parts of the two that occurred simultaneously in 2001, when whichever state was the stronger at the time took over. In both states: I find life very difficult and struggle to function; there is a desire to hide away from the world; I have to cancel things, put my life on hold, and need lots of support. In both, there is strong suicidal ideation (and there have been attempts), and I struggle with basic self care such as keeping up with admin and maintaining a reasonable living environment. I also have dysfunctional relationships with both food and alcohol and any semblance of normal sleep pattern usually goes completely haywire. There are probably more things, but this gives an indication of what I experience during both breakdown and burnout.

However, there are also differences. In breakdown I am still and I oversleep massively. In burnout I hardly sleep at all and I move almost constantly. In breakdown it helps to get out into the world and to be around people. In burnout I need to be alone for most of the time. In breakdown light can elevate my mood. In burnout I’m so hypersensitive to light I sit in the dark wearing sunglasses. In breakdown I generally overeat and crave sweet foods and chocolate. In burnout I struggle to eat at all and want plain white savoury foods above all. In breakdown I can cope with ordinary levels of background noise as well as usual. In burnout I’m really sensitive to sounds and crave silence – even having to watch the TV with the sound turned off and reading the subtitles. In breakdown I have a consistently low mood and am chronically depressed without let up. In burnout my mood fluctuates wildly and periods of depression alternate with much more positive phases.

I’m sure there are more differences too, but those are the ones that I have thus far observed, along with the fact that most of my breakdowns have followed a period of hypomania (my bipolar disorder is classified as Bipolar II), and the two episodes of burnout have followed an extended spell out in the world building a life involving lots of social contact and lots of sensory stimulation. Whether there will be future episodes of either breakdown or burnout I don’t know. The knowledge that I am autistic will now enable me to change my life and possibly to avoid, or at least soften, any future burnout, just as all the work I’ve done over the years has helped me to recognise early signs of both mania and depression and to act on them early enough to reduce the severity of more recent breakdowns.

Everything is starting to make so much more sense now that I’m reviewing my life with the added knowledge of autism. Things that have puzzled me for years are finally becoming clear. Some of the snippets of memories I have from the 2001 breakdown that have never quite made sense with my other breakdowns – my reactions to sound and light, my desire to bang my head repeatedly against something, my lack of sleep, my inability to eat – now make sense when regarded as autistic burnout, and when I compare that time to the present day, it’s very easy to see.

This is one of the reasons that an autism discovery later in life is so big. It’s not just about the present and the future and a change in life from the point of discovery onwards, it’s also about redefining many many past experiences and, to an extent, rewriting the history of my life from a different perspective. It’s a life-changing discovery that changes all of life, from birth to death. The facts of the history don’t change, obviously, since this isn’t time travel, but the perception of past events and the sense now made of previously puzzling experiences by having a whole new language to work with is like a constant stream of new discoveries and realisations that really are mind-blowing!

Time Stood Still

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So, within the space of six weeks I had gone from total cluelessness to certain knowledge.

The “autism hypothesis”, as I was calling it at the time, had started to form, tentatively, some time around the middle of August. As the meltdowns became more frequent and severe, and my sensory system started to go into overdrive, it became impossible to ignore the idea that autism might, indeed, be an explanation for what was happening to me and for my inability to cope with the world, particularly when surrounded by people. It also appeared to explain at least 90% of the problems I’ve had throughout my life and I knew I absolutely had to investigate it – very thoroughly and in great detail.

My Amazon account records show that I ordered the book with the list of traits on 23rd August, having read the sample on my Kindle app. That was the day that I started to take the idea really seriously – I was home from the camping trips, back in my normal environment, and now had time to research the whole subject of autism and how it might (or, indeed, might not) apply to me.

Interestingly, 23rd August is also the date still shown on my tear off calendar for 2016. It’s as though time stopped that day. And, as I lie here in the middle of a chilly December night, typing this into my phone, it feels as though time is still stopped. Apparently it is cold outside and will soon be Christmas – I have hardly noticed. I felt slightly surprised when I saw the autumn leaves on the ground a month ago – then realised it was November. Since August my mind has barely acknowledged the passing of the seasons or the world around me. I might as well still be lying in a tent, unable to speak or move, listening to distant dance band music, tears rolling down my face. Much of the past four months still feels like some kind of surreal dream, but however hard I pinch myself, I never seem to wake up.

Part of the reason for this state is that I had some sort of mental breakdown at the end of the summer – at least that was what I initially called it, until I had enough information to realise it was actually something else. Much of my mind has gone into hibernation, unable to deal with everything at once, so entering some sort of unreal stasis. A bit like when someone dies – you just think you’ve started to move on and the grieving process has ended, then it hits you over and over again. Similarly my mind has been processing all this in bits at a time and it is still doing so, which is why many of these early blog posts might seem a little random or uneven at times. Sometimes there might be fluent informative writing, sometimes accounts from my past as my memory tries to process old experiences in the light of new information, sometimes diary-style posts, sometimes poetry-style writing, and who knows what else. Some of it might well be contented and happy, some is likely to be triggering and difficult. I don’t yet know. I don’t have the energy to plan in detail, but I do know that writing will be part of the process of sorting all this out in my head, and I hope that, just maybe, it might help someone else – even if just one person, it will be worth it. My mood is still so erratic that it can plummet or soar within a space of hours or even minutes, and although I’m trying to write each post over a day or so in order that they make some sort of sense and I can balance them out a little, raw emotion might spill out from time to time and I don’t expect I shall be able to sustain a regular and consistent writing style or pattern of posting – maybe there will be days with nothing, maybe multiple posts in a day. Who knows? It will be what it will be, as I try to work through the chaos that currently exists inside my mind. All I can do is try to tell it like it is, in the best way I can, which is what I’ve always done throughout my life.

And while all this is echoing round my head, just like during bereavement, the outside world continues to exist. Bills need paying, clothes need washing, food still has to be bought. And I have had to use every ounce of energy to keep up and to try to maintain as much of the life I have built over the last few years as I can, to decide what to keep, what to drop, how I can function. My husband has been and is still being, utterly extraordinary, propping me up wherever he can, communicating on my behalf, and still going out to work and earning the money that keeps us off the streets since I’ve been unable to work for most of my life. I have said many times over the years that I would not be alive today if it were not for him. Most people think this is some sort of flippant statement. It is not. It is completely serious.

I am operating in some sort of “safe mode” at the moment. Just doing the absolute basics. While the world around me continues its daily routines and its seasonal changes, I feel as though I am held in some sort of suspended animation, while my autistic brain, which was never very good at coping with change (now we know why), tries to come to terms with the biggest change I’ve ever experienced in my life.

The Discovery

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am autistic.