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!

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!

The Preamble

I have become increasingly conscious over the last few weeks that there is a significant part of my “autistic journey” still absent from this blog. I’m also conscious that I have so far erred on the side of pointing out some of the inadequacies of services available, and that the only account of an autism assessment I have thus far published is a pretty scary and negative one.

It is true that I have encountered some difficult times during the diagnostic process and that there is much that could be improved. I still look back to the end of November 2016 with some horror and still hope to be able to feed back what happened at some point (one reason I try to type things up is so that they don’t vanish from my mind). And I also look back further to other “care” I have received, including the unhelpful GP who, two decades ago, told me to stop crying and sent me away with a packet of citalopram, and the counsellor I saw, a decade ago, who told me that it was my fault I didn’t fit in with the people at the office and I needed to try harder and learn to wear make-up and be able to discuss it and so on. These times were not good.

However, I can also look back into the history of my mental healthcare and pick out some people who were really good and really helpful. The locum GP who first referred me to a psychiatrist, realising how terribly ill I was, my current GP who has been totally supportive throughout, and a team of people who really did help with issues relating to my mental health and bipolar disorder in particular – an excellent CPN (community psychiatric nurse) and several charity workers who were brilliant. And I can look back into more recent history and see that the triage service (the stage between my GP appointment and my autism assessment) were also as helpful as they could be, and that I eventually ended up having a thorough, helpful, and successful autism assessment, carried out by people who really did know their stuff and really did help me to work out what was going on.

The only comparison I’ve thus far made between the two assessments I went through has been that in A Tale of Two Assessments, but now is the time to expand upon that post a little, and to try to write up, as best I can, five months on, what happened at that second assessment (or, indeed, third, if you count the assessment that was cancelled only hours before it was due to happen). Unlike the first assessment, which I didn’t write up for nearly a month because it was so triggering and upsetting, I’ve left the second assessment until now partly because external factors intervened (my father’s cancer diagnosis, various events to which I was committed, the need to sort out admin that had piled up prior to diagnosis, working on the report with my assessor) and partly because I have simply been exhausted and trying to process the whole thing. I knew, from reading what others had said on the topic, that getting a diagnosis would come with a whole load of conflicting emotions, and my assessors had also told me that alongside the relief would come a whole lot of other stuff, so I was prepared to go through another set of ups and downs like those described in Various Feelings.

What I had been less aware of is just how exhausted I would be, not only from relief because the fight to be recognized and validated was over and my life finally made sense and so on, but also from the energy used to gather the information over the preceding months. Looking back now, I can see that my life, from the end of August 2016 onwards, was almost totally taken up with researching autism. I read over 20 books, hundreds of blog posts, and spent hours and hours making lists, going through traits, going through my life, discussing with a few trusted friends, filling in quizzes and forms and questionnaires. The enormity of the discovery sent my mind into overdrive, and throughout September, October, and much of November I hardly slept or ate, was permanently on a sort of hypervigilant alert, and had a really intense time of discovery, of learning about my early childhood, of piecing things together, and of finally learning how to listen to my body and allowing myself to stim intensively, often for hours each day. Four decades of masking suddenly ended, the energy to pretend gone, completely burned out, and autistic me emerged somewhat powerfully.

Then came the first assessment and the crisis that followed it. My burnout finally reached the stage where I spent a lot of the time in shutdown, increasingly nonverbal, and retreating from the world, just trying to survive. However, the job of getting a diagnosis was still not done, so I kept pushing and pushing, started this blog, gathered more evidence, went through more stress, and my husband worked like crazy to get me the second referral to the team who eventually diagnosed me. Having been through the six months prior to February, it’s not really surprising that once the objective was achieved, I was utterly exhausted. And I still have to cope with being autistic, in my mid-40s and in perimenopause, working out where to go from here, and trying to maintain sufficient levels of self-care not to fall apart completely. I’ve also, tentatively, started to sort out the pieces of my life that were abandoned several months ago and have started to get back out into the world a bit more and begun the process of working out where I go from here, as I’m finally beginning to regain a bit of functionality again.

But now I am as ready as I’ll ever be to fill in the gap in the story of my diagnosis, the tale of the time between Weekend Journal and An Announcement, and of the five hours of my life that gave me the validation and permission to be myself and confirmed that what I’d learned over the preceding six months was true, confirmed by somebody who clearly knew what they were talking about and was willing to give me as much time as I needed to explain, to talk, to work things out, and who made the experience as smooth as it possibly could have been. I can’t yet predict how many blog posts telling this story will take, nor how long it will take me to write them all, nor what other posts I might feel moved to write in between times, before I complete the whole “diagnosis” story, but once I’ve documented the whole process I’ll try to find some way of linking everything up so anyone who’s interested can follow everything sequentially. I’m in the process of trying to organize the whole blog a bit better anyway.

It’s strange now to think, just over five months later, about those five hours on that day. It was a day that had been long awaited in several senses – the time after the first assessment had felt like an eternity, the months following the discovery had been intense and focused almost entirely on getting a diagnosis, and the four decades of a life that didn’t quite work had finally got to the stage where all those little things that weren’t quite “right” would be explained and validated by one sentence on one rather surreal day.

It was certainly one of the most significant days of my entire life!

What A Year!

It’s my birthday tomorrow!

Don’t panic – this isn’t some sort of crisis of ageing, or plea for cake (though I’m not averse to cake), or any other similar thing. I have no issues with birthdays – been having them all my life and am generally pretty chilled about them.

I do always have a little moment of thinking about the actual number though, and usually, when I move from an odd to an even number it’s really satisfying – especially if it’s a really good even number with loads of factors, or some nice symmetry or something. 46 could be worse – a year of life for every chromosome is quite satisfying, and the fact that its prime factorisation is 2×23 echoes the chromosomal connection, since chromosomes come in pairs, enhances that satisfaction (even though 23 is a much larger prime factor than I’d ideally end up with for maximum numerical pleasure). That it’s made up of two adjacent even numbers pleases me, as does the fact that the digits add up to 10. I’m sure I’ll be thinking of many more advantages and disadvantages of 46 as a number over the coming year!

So today is the last day that my age will be 45. Unusually for an odd number, I find it really pleasurable. Prime factorisation of 3x3x5 is good, the fact that it is the sum of the digits is even better, and, of course, it is a multiple of 5. Multiples of 5 are the most preferable of all the odd numbers to me, so being a “5” is always good. Furthermore, the digits add up to 9, which is a square number (nice) and it is, itself, a triangular number! All this is good!

However, aside from an excuse to enjoy a bit of prime factorisation and so on, and maybe eat some cake or have slightly nicer wine for the evening, birthdays do make me pause, just briefly, to remember birthdays gone by and to reflect on the past year.

And this year I’m looking back at the last 12 months and basically thinking “Crikey! Did all that really happen?” in a really really big way.

Really really big!

Because 45 is always going to be the age I was when I discovered I was autistic and when I received my diagnosis.

I’m still struggling to explain just why such a discovery and diagnosis is such a big thing (though talking to others who have been through the same has revealed that I’m not the only one who regards this as such a big thing, as life-changing, and probably even life-saving (or, perhaps, life-prolonging, because I have to die sometime, just a case of whether that sometime is sooner or later)). I am, of course, still trying to get my head round the whole thing in any case – the discovery was only 11 months ago and the diagnosis less than 5 months ago, and on my last birthday I was still totally clueless about my neurology and about many of the things that have occupied my mind for most of the last year.

I wasn’t someone who’d “suspected for a while” (though I always knew I was a tad on the eccentric side and generally did things my own way, and I’d been aware all my life that the world was generally confusing and often difficult, and so on – but I assumed that was just the way life was for most folk and they just had more energy than I did), so I really have gone from “completely oblivious” to “diagnosed autistic” in a rather short space of time.

And I find myself in the slightly odd position of being rather knowledgeable about being autistic, simply because that has been my lived experience of the world all my life, which is rather strange. And, of course, because when I then get interested in something (such as autism) I get VERY interested, I’ve learnt a whole load of stuff that I’d never even have imagined existed this time last year! And most of it basically describes me, and my life – and I turn out to be rather less unique and different than I’ve always assumed! This is also odd – I was a quirky, crazy, eccentric, and rather batty neurotypical person who had basically failed at loads of stuff and was seriously mentally ill (all of this so I thought, though I’d never have used the term neurotypical because it wasn’t part of my vocabulary), and then suddenly I wasn’t – I was a really rather ordinary and quite stereotypical autistic person who’d been trying to be something I wasn’t for decades and had broken myself in the process (quite a revelation)!

And I’ve spent much of the last year thinking about all this, and learning, and realising that I AM, in fact, very stereotypically autistic. And as soon as I put autism into the equation, my life makes sense in a way that it never has done previously. And as soon as I realised what had been happening all these years and ran out of energy to mask, it all seemed so very very obvious!

And all this happened when I was 45. From first suggestions, formation of hypothesis, through self discovery and the diagnostic process, discovering other autistic people, taking my first tentative steps into becoming part of the autistic community, becoming a blogger, and starting the process of reframing my past and pondering what might make a more suitable future than the one that I’d been working towards all my life (and failing to achieve).

There’s loads more to do and loads more to learn. I’m still reading and watching and working out how to respond to people’s questions. I’m still trying to work out how to respond to my OWN questions – this is not something that happens overnight, and my views on things are still constantly changing and evolving in the light of new information. This is a process that will probably continue, to a greater or lesser extent, for the rest of my life.

But one thing is fixed. For the rest of my life, the year during which my age was 45 will forever be one of the most important years of my life (maybe even THE most important). The twelve months that have just happened have undoubtedly changed my entire identity (yes, it really IS that big – I am of course “still me” in many ways, but the knowledge I have gained in the past year means that my life will never be the same again – my past looks completely different now, and the way I live my life and feel about myself and my place in the world has changed forever – this is not a bad thing, rather a great relief and liberation from years of pretending to be someone I wasn’t)!

Tomorrow will be my first birthday as a known autistic (obviously, I’ve been autistic on all my other birthdays, but just didn’t know). I’m not sure how I feel about it (thanks alexithymia), but I sort of think it should be significant somehow. Perhaps I’ll work it out at some point. I think maybe there is a sense of moving on and continuing to rebuild my life and continuing to experiment and to work out what I’m actually going to DO with however many years I have left on this planet (that isn’t yet obvious to me, having had to ditch many of my previous expectations), but also a year of “this time last year”s ahead, as I continue to process everything that has happened and to review each milestone in my autistic journey with the benefit of a year’s hindsight.

But whatever happens in the future, what happened when I was 45 will stay with me for ever. 45 will never be “just another age” for me. Not only did I get my diagnosis at 45, but the whole process happened within that year. I can’t imagine I’ll ever have another year like it again.

My mind’s still a bit blown by it all really!

But, on balance, in a good way!

Going Back

I returned
To the place
Where life
Fell apart
Last year.

To the scene
Of so many
Meltdowns
And tears
And disasters.

To the memories
Of fear
And difficulty
And wondering
Why
I couldn’t
Just get on with life
Like most others
Could.

A whole day
To pack.
The journey there
Dissociated.

Focusing on
The practical.
Doing the most
Essential bits.
Taking as much
Time out
Alone
As possible.

Starting to learn
To accept
Help
Even though
It is counter
To everything
I have ever
Worked for.
Having to change
My mindset.

Struggling sometimes
Someone talking
To me
When I wasn’t able
To process speech.
Conflicting instructions.
Near meltdown
But not quite.
Speech gone
For just over
Five hours.

Consciously being
With other people
When I couldn’t speak.
Instead of texting in
“Sick”
And staying away
As I would have done
Previously.

Senses on overload
Lights too bright
Music distorted
I knew it sounded
Wrong
As if being played
Through a
Faulty
Amplifier.
Not what Mahler
Intended!

Knowing
Some things
Would help
But lacking
The ability
To do them.
Inertia.
Energy.

Living away from home
Minus usual care
And routines.
A few meals
Missed,
Some medication
Missed.
Executive functioning
Declining
Sensory spoons
Depleted
Social spoons
Deficit.

Feeling guilty
Because
I wasn’t able
To contribute fully
To everything.

But

People helped.
No rehearsals missed.
Near constant
Low level stimming
Was fine.

And mostly
The music
Was wonderful,
Not distorted,
And I can
Still
Play
The viola.

Learnt so much.
Started to understand
Just WHY
So much of
This stuff
Has always been
So hard.
Now I understand.

Beginning to adapt
To the new life
With the new knowledge.
Starting to accept
That I need
To do things
A bit
Differently.
Consciously
Saving energy
Where possible
Now I know
What uses it.

There is more needed.
It isn’t all solved
Yet.
I still find
Asking
For adaptions
Really hard.
Partly because
It is so new
And partly
Because
I don’t yet know
What is possible
Or what I need.

But I am starting
To realise
Why some things
Feel bad.
And always have.
And even though
They still do
Understanding WHY
Helps.
And I can start
To notice
How things
Drain my energy.
And why being
Near to other people
Is tiring
And why “washing”
With vile slimy wipes
Makes me feel
Even worse
Than I already did
Without my bath.
Sensory hell.

It is still
Very much
A work in progress
This new life.

And I need
So much
Recovery time.

But it is possible
To enjoy
Something
I had thought
Might
Be beyond me
And so
Lost for ever.

There are
So many
Good things
I don’t want
To lose.

Maybe
I can keep
This one.

I went back.

I survived.

Pride

Today is, the internet informs me, Autistic Pride Day!

This is another of those things that, until this year, I wasn’t aware existed. Just like autism awareness day / week / month or whatever, I was pretty much oblivious to all of this stuff, just as I was oblivious to the fact that I was, it turned out, autistic!

I really should pay more attention!

I’m really not sure I can claim to be proud to be autistic, since being autistic was an entirely effortless process on my part – all I had to do was be born! The processes that meant I have an autistic brain went on all by themselves without me having to do anything at all – I just existed in the only way I knew how!

I’m not quite sure even that I can be proud of surviving this far while working to survive in a world that turns out to be a bit more challenging for me than it is for many others. I’ve had several times of trying not to survive and my survival through them has been entirely down to luck. I suspect I only coped with such high anxiety levels because, to me, they were just normal!

Neither do I feel that I have yet done anything much else to be proud of, although I’m at least sufficiently aware to know that some of my friends will tell me off and say “Yes, but you do xyz and it’s amazing…” and so on! I’m still working on this bit, and it’s probably the area where I have the most internalised ableism towards myself – I know I haven’t fully dealt with the issues discussed in Expectations Gone and Career Snake!, and that that’s still very much work in progress.

Furthermore, the society in which I live generally measures value in terms of financial success – it’s all very well being told “well, you write a nice blog” or “that was lovely that you played some music”, but if I show up at the checkout in the supermarket and tell them that I’d like to pay for my food with “nice comments”, then I’ll go hungry. The part of me that was brought up to believe that I would earn my own money and be “successful” in that way is still fighting with the part of me that knows just how little I contribute and how I am entirely dependent upon handouts from others to survive. I can’t even claim to be pulling my weight domestically – I don’t raise kids because I couldn’t have them, and my husband does about 90% of the domestic work in the flat!

Anyway, I digress. This is supposed to be about pride. And, perhaps, pride in a rather different sense, but because of the way my mind works it’s going through all sorts of “pride” things and I now have a video clip going through my head that shows a large group of rather handsome lions roaming around a grassland somewhere in what is probably Africa! But I’m not supposed to be blogging about lions!

So, returning to what the day is supposed to mean, it seems that it’s meant to be some sort of celebration of neurodiversity. There are probably marches and things and parties or whatever, that I’m unlikely ever to go to because I’m not really a marching sort of a person – more of a blogging sort apparently!

It also seems that one of the basic tenets of the movement is that neurodiversity in general (and presumably autism in particular) is part of a natural variation in human existence, rather than some deviation from the norm that requires a “cure” (I’m still at a loss as to what people who discuss “curing” autism can possibly mean – it just makes no sense, given that it isn’t an illness or a disease).

It also seems to emphasise the notion of autism as a “difference” rather than a “disability”. I’m still forming my ideas about difference and disability, and still getting to grips with the whole “medical model” and “societal model” thing. I class myself as disabled (and have done for years, ever since it became apparent how my mental health issues affected my functioning), but I’m still trying to figure out to what extent the disabling effects of me being autistic and mentally ill are a result of my inability to function in certain ways and to what extent they are a result of the society in which I live. I haven’t even managed to sort out what bits of my “disability” are down to me being autistic and what bits are the result of mental illness. There’s a lot of work still to do.

The more I think about all this, the more I realise I don’t know, and the more I feel like I’m only just scratching the surface of issues about minority groups, privilege or lack of it, models of disability and so on. I’m a musician and scientist, not a sociologist, and I’m a bit out of my depth at the moment. There is a lot of observation and learning and thinking still to be done before I can really start to analyse it all.

The other basic tenet of the autistic pride / neurodiversity movement seems to be that it is led by autistic people themselves and is not a day for organisations led by non-autistics! This, I really hope, is something that will prosper. It’s so true that so much autism research and so on is still led by non-autistics and that there is still such a long way to go in really understanding (as I discovered at the recent conference) what it’s like to live as an autistic person in a world that is, for want of a better expression, distinctly sub-optimal for our neurology!

Of course, given the situation I’m now in, I’m actually rather fascinated to discover what it might be like NOT to be autistic – I feel, to a large extent, that I’m just me and always have been, and what I actually discovered when I found out I was autistic was not that I was different, but that 90+% of the rest of the world was different! From my perspective my autism diagnosis was effectively the same thing as most of the rest of the world receiving a diagnosis of allism!

I’d really like to spend a day living with a neurotypical head to see what it was like because it would be fascinating to compare with my own experience. Are there really people who sit still on chairs and don’t find it deeply exhausting and uncomfortable? Is it actually true that there are folk who can chat in small groups without trying consciously to compute every single thing they say and work out when they should contribute to the conversation? I’d be fascinated to discover – though I wouldn’t want to commit to more than a day because I’ve been used to my own head for quite a long time and there might be all sorts of things about my neurology that I’d suddenly miss – I don’t even know at this stage what they might be because I’m so used to my normal being my normal and so unaware of how other types of brains might work! Perhaps the fact that I worry little about things that seem to vex many people is part of my being autistic and I’d really miss that freedom of thought? Who knows? But I do know that I’ve discovered a contentment since getting my autism diagnosis that’s rather nice and that I’m not in a hurry to mess with it!

Anyway, I digress again. And now return to the tenet of autistic people themselves having a voice and being part of the discussion of neurodiversity. That is, of course, part of something that I do manage to do a bit (being a blogger, not a marcher), and, as I discussed in my final conference blog post, maybe an area to explore for the future. Who knows what I’ll be able to do, or what impact it might or might not have, but it’s a possible direction for the future and if I can ultimately be helpful to other members of the autistic community, which I have suddenly, and rather unexpectedly, become part of, then maybe that really will be something to be proud of!

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.