The Magic Spot

You know those hanging sculptures?

The ones in spacious modern art galleries?

They’re made of all sorts of bits and pieces, hanging from the ceiling.

When you walk in to the gallery

All you see is a load of stuff,

Suspended on a bunch of wires.

Nothing makes any sense

And you wonder what crazy person decided to hang all their junk up from the ceiling and call it art.

But you walk around the room.

And you can see that the stuff is actually somewhat organised

And forms a picture.

Of sorts.

You stand and look at it for a while and you are about to move away and leave the room, because the picture really isn’t that good.

It’s all out of focus. Bits randomly appearing where they shouldn’t be. Gaps where you might expect to see continuity.

Then somebody says something to you,

Points to the outline of a pair of feet on the floor, previously unseen.

You place your feet over the outlines.

And you look at the junk, hanging from the ceiling…

Except that it is no longer just junk.

It is no longer a picture out of focus.

It is clear.

And beautiful.

And it makes sense.

Each individual thing, contributing to the whole. Each tiny piece of junk is supposed to be there. Nothing is out of place any more.

Because you are viewing it from the correct spot.

And it’s a beautiful piece of art.

Now imagine that you have spent forty-five years in that room, looking at the stuff that forms your life and trying to make sense of it.

And then you stand on that magic spot.

And you finally see the picture in focus.

And your entire life makes sense.

And you get a little bit of hope that it might even, one day, be a tiny bit beautiful…

You need time for your feet to recover from standing in the gallery for so long. You are exhausted.

You need to get used to seeing the picture clearly because the detail is overwhelming, and seeing it like this for the first time is new and unfamiliar.

And you need to show everybody else how they should look at the picture.

Because they won’t all understand what you mean straight away.

And maybe some never will.

But now you understand.

Your life makes sense.

Now you know where you need to stand, you can safely move around the room again, examining each individual piece, hanging from its wire.

You can analyse how each item fits, and you can see why it is there.

You move your feet away from the marks on the floor.

And you see that they are no longer outlines of feet. They are now words.

You bend down to take a closer look.

And you read the words that are written on the magic spot, the words that give you the information you need to make sense of your life.

They simply say:

You are autistic.

A Short One

I have just been out for a walk.

This might not seem like particularly startling news. Especially when I tell you that my walk was just 2 kilometres long and I was out for under 20 minutes (the 2km actually took 18 minutes, 24.7 seconds).

The fact that I know that much detail about my walk (at an average pace of 9:12 per kilometre) will tell those in the know that I didn’t just amble round the block randomly, but I took my Garmin (running watch) and measured time and pace and so on.

I also wore my running shoes. A pair that have done a couple of marathons with me.

All this might seem rather irrelevant, and a slightly strange blog post. Maybe so.

But it is important.

Because it is the start of returning, properly, to life. It is a tiny bit of something approaching “normal” in this huge sea of autism and mental health and newness and unfamiliarity.

Aside from one short run in January, I have not run since November. Granted, I didn’t run today, but I took the first few steps (2043, according to my Garmin) towards it. Back in January I was making a desperate last-ditch attempt to be well enough for my spring marathon (and ultra) season, but I really wasn’t well enough, and quickly gave up.

So now I have abandoned all races until at least the autumn. And I am starting over. And I am making it as easy as possible to start over.

Because at the moment I am still struggling with inertia, massively. I’ll write properly about autistic inertia sometime – it’s the feature that means our brains are very good at persisting with things, often for hours on end, but are terrible at starting and stopping or switching tasks. The effort needed to start something is huge, and takes a lot of energy.

Furthermore, I still have huge anxiety when leaving the flat. My senses are still in overdrive from the burnout. The world is still loud and bright and full of so much information that I feel like my head might explode. Previously I would have used energy to mask these feelings, consciously blocking out the input to my senses – doing so for years has both left me too exhausted to function and has been seriously detrimental to my mental health.

So, in as far as I have any control over things, I am determined now, to be me, and not to use that energy unless I absolutely have to for survival. Furthermore, since the energy to mask ran out I can’t do it. I don’t have the resources to act any more, so I have to live as I am, now acutely aware of my heightened senses, but also no longer making myself be strong, no longer forcing myself to block them consciously, even though they are sometimes overwhelming.

Couple all that with the anxiety I’m still getting just leaving the flat, and you’ll begin to see why going out for a walk was such a big deal today.

And so my strategy was to make this first outing as easy as possible, so that all my energy could be focused on getting out of the flat, dealing with the overwhelming light, sound, smells and so on, and overcoming that initial hurdle of actually starting anything at all.

So no running clothes yet (there’s a sensory issue with fabrics touching my skin which I will have to deal with), and not yet backpacks or belts or other such kit. Daytime clothes, my familiar handbag for keys, phone, and inhaler, but just two relatively easy adjustments to my normal “leaving the flat” gear – my running shoes and my Garmin.

Tiny tiny adjustments. Minimising the “difference”. In order to get out at all soley for the purpose of exercise, without the pressure of an appointment or another person expecting something of me.

And a “workout” so easy that it didn’t tax me physically. I know I can easily walk 2 kilometres, so didn’t have to put that part of it into the pile of obstacles in my brain, didn’t have to factor in a tough training session when persuading myself just to go out at all.

And I took a regular route that I run often, a known 2 kilometres. In the early afternoon when most people would likely be at school or work, and I’d have as little chance of encountering people as possible.

And so it happened. Starting over. Picking up fragments of my old life, the life that fell to pieces when I discovered I was autistic. The life that almost ended in December. The life that I now have to rebuild, differently, readjusting now that I know better what will help me to stay well.

The absence of either job or offspring in my life, coupled with my extreme burnout and wildly fluctuating moods, has meant that there has been very little “normality” of any sort during the last six months. Learning about autism and my being autistic has been fascinating, but I am also worn out by it – my entire life has been consumed by it for months. I need to ease off – my head is full.

It’s time to reclaim just a few bits of “normal” life.

Slowly, gently, with space in between to recover.

A couple of kilometres at a time.

Talking and Listening

As a runner who has mental health issues it was, of course, a foregone conclusion that I would watch a television programme entitled “Mind over Marathon” – an account of how a group of people who have a variety of mental health conditions train to run the London Marathon in order to help improve their mental health. The programme is presented by a good and sensitive presenter with a team of “experts” to help, and also features a couple of young princes who are advocates for mental health awareness.

As a blogger who is currently trying to use the written word to explore my feelings about various things it was, of course, a foregone conclusion that my brain would be fizzing with thoughts that needed translating and my fingers would be itching to get to the keyboard in order to do that work. How successful I will be in trying to impart some of those thoughts, who knows, but I’ll give it a try.

But first, two really really big disclaimers, or “health warnings” or whatever you want to call them, about what I want to write later on.

ONE

I am in absolutely no doubt at all that it is massively massively good thing to talk about mental health. I think it’s great that young royals are getting involved in the whole business and raising awareness and making mental health part of the discourse of current life. Anything that can be done to “normalise” words such as “mental” (one of the participants on the television programme mentioned how uncomfortable he was using the word because of the derogatory connotations it sometimes has) and, indeed, “autistic” (which I’ve heard people say mustn’t be used because it’s an “insult” – er, no, if people are using it as an insult then they are misusing the word) is a good thing as far as I’m concerned. To take words such as “mental” and “autistic” and treat them in some ridiculous Voldemortesque way simply continues to ignore issues that need addressing in many people’s lives.

I have seen many posts online indicating that “It’s all very well for wealthy figureheads to talk about mental health, but what about the ordinary folk?” I have heard those messages and, to an extent, agree, and in no way do I believe that “Prince Harry says talk about mental health” means that the job is done and that “awareness has been raised” and we can all now comfortably go back to ignoring the real, everyday, practical problems that people are facing. BUT, out of my bubble of friends and online pages and groups, most of whom are pretty savvy about mental health issues (“mental” is a commonly used word in my life and I’ve been open about mental health issues for decades), there are still those out in the wider world who are not taking these things on board (some of the comments on mainstream media facebook pages alone are enough to indicate this is the case), and if a high-profile person talking openly helps, then yes yes yes, all to the good. Yes, a young privileged man who has suffered exogenous mental health issues as a result of going through the process of grieving the death of his mother in the public eye is not one with which most of us can relate, but it is valid personal experience and he has used the advantage of his position in the public eye to open the discourse.

TWO

I am also in absolutely no doubt that exercise has a huge and important role to play where mental (and indeed physical) health is concerned. I absolutely don’t need to be convinced about the wonder of running – I’m an ultrarunner and in the ultrarunning community it’s well-known that people have overcome depression, addiction, and all manner of other difficulties through the power of running. I don’t need to be convinced to enter a marathon – I do that just because I like doing it. I enter the ballot to run London every year but am yet to be successful. Running is awesome and cool and fabulous. I’m currently frustrated because my own difficulties currently mean I’m struggling to run and I’m really really keen to get back to it and gently pushing myself in that direction whenever I have the energy. I do not need anyone to tell me about the excellence of running – the sheer wonder that comes from being out on the trails alone in the middle of the night, with the moths fluttering in my head torch, is more than ample to persuade me.

I am, however, aware that running per se (and particularly yomping around the countryside alone at night) might not suit everybody and that other forms of exercise are available. Some people prefer to have a team around them, some have physical impairments that mean swimming is gentler on joints, and there are many barriers to some people exercising at all – it’s by no means easy, and it’s no panacea, rather, part of a toolkit that can really help improve mental health in some circumstances. I am also aware of the dangers of exercise addiction and its link to eating disorders and that not every journey to run a marathon ends in a triumphant finish line smile – for some, the stress of training or the frustration of injury can make mental health worse, not better. But, with these provisos, and other similar ones, I absolutely see how wonderful exercise can be, and it can play a really important part in achieving and maintaining good mental health.

***

Having said all of the above, what do I now want to add? What actually prompted me to write this post? And how can I address the issues to which I have alluded above?

The moment that triggered it for me was the point in the programme where they were interviewing a young woman who was clearly struggling with coming to terms with a massively traumatic experience in her life several years ago. Her child died suddenly, and her husband, overcome by grief, killed himself shortly afterwards. And this young woman sat on the telly and recounted what support had been available to her at the time – or, more accurately, recounted that there had been NO support available to her at the time. Nothing.

I don’t know what has occurred with her in the intervening years, and neither do I have the energy to do a research project on it, but it strikes me as shocking that her issues are only really being dealt with FIVE YEARS LATER! Five years is a very long time to be in mental anguish before you are eventually picked up by a TV programme. And, even now, it seems that in order to get the level of support that the TV people are providing, in terms of “experts” and so on, the woman has to run a bloody marathon – literally! (Please see disclaimer TWO above – and, of course, the marathon is the point of the programme).

And, watching the programme I was struck, not by the rigors of marathon training (that’s all familiar stuff to me – I went, as an obese fortysomething, from couch to marathon in seven months a couple of years back, and the training, exercises, foam rollering, so on are all part of the deal), but by the level of support that these people were given. Admittedly, the support came with a rather large side order of “we’re going to film this so you’ll be exposing your emotional vulnerability on national telly”, which I didn’t have to contend with, but neither did I have a cuddly TV presenter or an “expert” come and look after me when I was shaking because of the stress of leaving the flat before going out on training sessions – I had to do that bit on my own. The TV marathon training programme is therefore not looking at the effect of exercise alone on mental health, because it is providing these people with someone to talk to, someone who will listen to their issues (both the people on the show who can give feedback, and those of us sitting on our sofas at home), and that listening is really important.

I have been talking about mental health online for around a decade now. I’m pretty cool with it. I very quickly became totally public about being autistic. I talk about both mental health and autism. A LOT (probably too much, truth be told). When I have been in mental health crisis I have posted on my facebook wall and the overwhelming advice has been “seek help”, “go to see your doctor”, “get referred to a specialist”, and so on. So I have tried, on many occasions, to do just that. But it is a fight, and if you are already struggling, already finding life difficult, and already reluctant to ask for help because you feel, somehow, that it is your fault you are feeling this way (there’s an awful lot of guilt comes with many mental health conditions), then fighting through the system to get the help you need can be a seriously tough process. And if you have nobody who can advocate for you then it’s even worse. Persuading someone to listen to you can be very very difficult.

The problems I had trying to get an autism diagnosis in a psychological services department and my analysis of the situation are documented earlier on this blog (the only “treatment” available to me at that time was to “go to A&E” if I actually tried to kill myself). I was struck at the time by how little cohesion there was between the different services available and how there seems to be nobody available who can deal with all of my issues, as well as the fact that those with really low self esteem are seen in a building so dilapidated that the plants are growing through the wall! Even the superb autism service elsewhere that eventually diagnosed me as autistic, cannot, for example, suggest any medications that might help with the anxiety I get, and neither can they help me establish whether I also have comorbid ADHD (all the online tests and so on and research I’ve done suggest that I do), because that’s somebody else’s department (if I can ever find “somebody else” and can face the exhausting process of telling my life story, yet again, to another stranger).

So “seeking help” is not as easy as it might seem. In fact, for most of us, it’s really jolly difficult. I have heard tales of people who are totally broken being offered “telephone CBT” (when you’re vulnerable, you get rung up by a total stranger, who gives you your allotted time on the phone then hangs up, leaving you in a worse state), people who are unable to communicate with services they need because communication is only by post (not so good if you are frightened of opening the mail because of what it might say), and, people asking for help with fear of the telephone and who struggle to speak on the phone being given a leaflet and, yes, you’ve guessed it – told to call a telephone number!!!

Equally, “taking up exercise” is not as easy as it seems, especially when you’re mentally unwell. If you feel insecure and frightened walking down the street (many of us do) then you’re unlikely to find going out to walk or run very easy. Furthermore, if you want to swim, or join a gym, or get any sort of personal trainer, then it is expensive, even at reduced rate, and many mentally ill people are out of work and struggling financially – if you have to choose between paying your rent or joining a gym then you’d be pretty daft not to pay the rent. When I started running I was lucky – I had enough confidence to get out of the door and a husband who supported me all the way. I had enough money to get a pair of trainers and a sports bra to get started with (this wouldn’t always have been the case in my life), and I live in a place where many people run, and it isn’t a big deal. I also have serious hardcore willpower and a level of “persistence” that gobsmacks most people (possibly one of my autistic traits), but many do not. Though I know many people who are trying, some even apparently inspired by my own accounts of running and so on.

I fear I’ve raised more questions than answers here, and maybe that’s actually what’s needed. My experience in both the mental illness and autistic communities has been that so much of the support comes from within, from people also struggling. I am trying to work out what might have enabled me to continue in employment in order to help those might follow me and be able to maintain jobs where I couldn’t. I have developed strategies to support myself based on the writings of others whose blogs I read. There are groups and people everywhere trying to piece things together and help each other.

Equally, and, sometimes surprisingly, the running groups and fitness groups have also provided a source of support for me and, I observe, for others. Those who do not have the support of a TV programme have to look after each other, encourage each other, either to get out there for a run or whatever, to cope with the frustrations of injury, or to discuss the fates of toenails and so on. The online responses to people who are struggling with whatever aspect of their lives or training can sometimes be amazing.

However, online support can only go so far. And there is a danger that those of us in the mental health “world” exist in something of a bubble and that people outside of that world don’t realise just how tough it is to get help or to get out there and run a marathon when your mind is telling you to sit in your chair and wait to die or even to hasten the process by your own actions. What is really needed is concrete, joined-up support, and both mental health services and physical activities that are easy to access. That is a much much bigger ask, and I’m only one very ordinary person sitting alone typing into a computer, a person who is still struggling day to day, and trying to translate the thoughts whizzing round my head into comprehensible words, so I don’t really know what more I can do, other than keep talking and keep raising the issues.

And so I come to at least one conclusion, which is that programmes like “Mind over Marathon” and statements by young princes, are important. And they’re important because they raise issues that those of us who are just individuals with no resources and no power are unable to raise, because we cannot reach the people that TV programmes or princes can. They can persuade people who will never encounter somebody like me (for whom mental health is a normal part of daily discourse) to talk about their mental health issues, and they can encourage far more people to take up running or physical exercise than I ever will.

However, the worry with such high-profile campaigns is that people will feel that they have “done” mental illness. They’ve all watched the programme, they all know what it’s about, and, like with autism “awareness” there will be a general feeling of “yes yes, mental health, blah blah blah”, but mentally struggling people will still be showing up at their GP surgeries after weeks of angst about whether to attend the appointment because it’s all so scary, and will be given a telephone number, or a web address, or, at best, put on a waiting list that might be months, or even years, long. There are lots of small, quiet, voices out there, trying to talk about their mental health issues and begging for help.

There are also people like me, who are slightly noisier and more forthright and link to blog posts and so on and share mental illness stuff whenever we can, even though, sometimes, writing a post such as this one uses up all available energy for the day. Interestingly (and I’m not alone in this observation), when I share mental health stuff or posts from this blog (I know that this is, technically, an autism blog and that autism is not a mental illness etc etc) on my facebook wall, these days I get a small handful of “likes”, maybe 3 or 4 on average, if that. If I share a status about doing the laundry then I often get 30 or 40 responses! This suggests to me that people are ten times more interested in laundry than they are in autism or mental health issues!!! (Of course, it’s not quite as simple as that because facebook algorithms magnify posts that have already been liked and try to force people who share blog links to pay money for extra publicity and so on, but whatever the cause, the result is still the same).

On one level, it’s great to talk and to raise the profile of mental health issues, and it’s totally fabulous to run marathons if you can do it. If more people are encouraged to talk and run then that’s brilliant!

But on another level, there are many of us who are already talking about mental health issues (and in my case, now, also autistic issues), have been talking for years, and will continue to talk while we still have breath.

But is anybody listening?

Uncomfortable

Like a pendulum
Swinging wildly,
Undamped.
My mind has still
Not settled.

Where I fit
Into this new identity
Is still unclear.

I talk to people
And many of them
Expect answers,
Where I still have
Only questions.

Some days
There is despair
And a feeling
Of life being limited
Permanently.

Some days
There is hope
And a feeling
That life will improve
Substantially.

But where I fit
Into this new identity
Is still unclear.

I am suddenly forced
To confront issues
I had discarded
Years ago.

Things very very uncomfortable.
Offspring. Female identity.
Neither of which I possess.
Autism forces these things
Into my consciousness.

Not to mention
My own childhood,
A door I had long since closed
Forced open for diagnosis.

Can open.
Worms everywhere.
Wriggling around,
Demanding attention.

The past
Begging to be analysed

But where I fit
Into this new identity
Is still unclear.

There is no stable backdrop
To my life.
Everything wobbles.
Precariously.

And my mind
Is trying to alter its perceptions
Of who I am
But progress is slow,
Like an ocean liner
Doing a three-point turn.

As I try to plan
For a changed future
I desperately search
For familiarity
And stability.

Autism is exciting,
Enticing, shiny, new.
But this very newness
Makes it also feel
Alien and unfamiliar.

I have never fitted
Into a community
I am not used to being
“Part of things”
As soon as I become so,
I feel uncomfortable
And withdraw…

Where I fit
Into this new identity
Is still unclear.

My past needs
Reframing.

My future needs
Replanning.

There is uncertainty ahead
How functional will I be?
What can I try to do?
What do I want to do?

Preserve the old
Familiar interests
(accepting my limitations)?

Embrace the new
And shiny interests
(accepting intimidations)?

I ask myself
And many times
I search for answers,
Where I still have
Only questions.

Where I fit
Into this new identity
Is still unclear.

My mind has still
Not settled.
It swings wildly,
Like a pendulum,
Undamped…

Where I fit
Still
Unclear

Unknown

Uncertain

Uncomfortable

Eight Weeks On

So, eight weeks on from my diagnosis, I’m once again pausing to observe the passage of that time, and, understandably, reflecting on how life has progressed since I sat in the room at the end of a five-hour interview and testing session and was told that I clearly fulfilled the criteria for a diagnosis of autism spectrum disorder.

Eight weeks ago today I was relieved and exhausted in almost equal measure, having been officially told the news that explained why my life had been so incredibly difficult and I had failed, consistently, to live up to the expectations and demands that that so many people (including myself) had for me. I had reached the end of the process of assessment, and the end of the “old life” and had, finally, got to a point where I could start to rebuild something new, gentler and more forgiving.

Because I’d already read so many other accounts of how things had been for other people, and because I’ve been around long enough to have experienced a lot of ups and downs, I was under no illusion that receiving my diagnosis would magically transform my life into some fairyland, or that I would miraculously be able to access beautiful support or that all the ghosts from my past would reappear and apologise for all the years they’d told me to work harder, do better, or whatever, or that they’d explain that they really didn’t know how difficult life had been and they wished they had. I was, of course, right to hang on to a healthy skepticism that things would miraculously “get better” – one advantage of being a bit old and a bit logical is that a belief in magic and sparkles and fairy dust is not on the agenda. This process of readjustment to my new knowledge and rebuilding my new life is not going to happen overnight, and nor is it going to happen at all without considerable effort from me.

There is also the burnout to consider, and my mental health in general. At my follow up appointment I was advised to book an appointment with my GP to discuss my mental health in general and where to go from here. I wonder whether there will be more referrals, more discussions, and to what extent maintaining any semblance of mental wellness is, for me, going to be a lifelong task. I suspect only time will tell, as I adjust to the knowledge that I am autistic, as I learn what works, and as I start to try to work out what I’m going to do with the rest of my life – that is currently a very big question on my mind, both in terms of what I am able to do, and what I might actually want to do.

But, at this juncture, I am trying to identify how things now are, eight weeks on. It’s almost in the spirit of keeping some sort of journal, perhaps to refer to later, to measure progress. I look back now to what I wrote in Tiny Glimmers, just over three months ago, and, although it might not feel like it sometimes, and although my life still appears to be rather poor quality in many ways, and terribly terribly limited, I can see that things are generally better, and that I’m achieving a little more. I also have the confidence of my diagnosis, the feelings of validation that it gave me, and just that tiny bit of support I’ve had (help with forms, a follow up appointment, reassurance that I’m correct on many things and not going crazy, and suggestions for what I might do next), which have made a massive difference.

Interestingly, when I wrote Tiny Glimmers, I’d been trying to organize my paperwork and sort out my jobs lists and just get things a little more organized. I did the same yesterday, so maybe this is part of the process of taking stock, moving on, and trying to consciously plan and be proactive in life rather than just reacting to crisis after crisis and just “coping” whatever way seems most possible at the time. I did mindfulness meditation for several years (and have not ruled out returning to it when I’m in a more suitable place for it – now is not the right time) and one exercise that I found useful and adapted was to “check in” with feelings and to notice how they were. I adopted a method, during silent practice sessions, of using some of the time to analyse how things were, both physically and mentally (I know the two are not entirely separate systems, but I found it useful to examine each separately because my physical and mental health are so wildly different in their presentation – my physical health and fitness is probably on the “better” side for someone my age in my circumstances, and my mental health is certainly substantially worse).

So, I’d sit and take note of all the various bits of my body, usually picking up on various niggles caused by 50K training runs and the like, trying to work out whether the hip-strengthening work I was doing was easing the ITB (iliotibial band) issues I had for a brief spell, establishing whether my breathing was getting better with the new inhaler, that sort of thing. Mental wellness was, of course, more complex and involved trying to work out exactly where I was on the mania-depression scale, whether I was sleeping, eating properly, levels of anxiety and suicidal ideation and so on. But the exercise was helpful, because it enabled me to decide either to alter my training schedule or do more targeted exercises (physical) or to turn down or cancel things to remove pressure (mental). I had, without knowing it, developed a very basic knowledge that I needed to conserve social and sensory spoons. The “checking in” process really helped with that, and was one of the positives that I drew from the mindfulness I learnt in an attempt to prevent me relapsing, once again, into severe depression.

And now I’m using the “checking in” technique over a longer timescale, and I observe that although my mood and functional abilities are still very wobbly, and still varying wildly from day to day, the good days are better than they were, and the number of really really bad days has lessened. Like the tiny glimmers I observed back in January, there are little fragments of a new life that are now starting to show themselves occasionally, little moments where I am interested in SOMETHING again, and feel that one day I might have the energy to rebuild life and actually make it a bit better, rather than just surviving day to day, and, sometimes, hour to hour. The person who wrote Tiny Glimmers would have looked at the person typing this now and seen a veritable superhero – out of the flat now twice a week on average, starting to think about the future because I’m starting to think that I might actually HAVE a future, and making very tentative plans for the new life.

I know that everybody’s circumstances are different, and that there are many external complicating factors (burnout, family circumstances, comorbid conditions, reactions from others, and so on) during the period following an autism diagnosis. And I know that what I write here also varies wildly as my mood fluctuates and as I try to come to terms with the past and plan for the future. I’ve read accounts and heard from other people that it will be a year or so before things are likely to improve significantly, as my autistic brain is using a massive amount of processing power just to adjust to my new identity and therefore I have less energy for other things. However, using the best powers of logical analysis that I can summon, and viewing the evidence in my own life and in past posts of this blog, I can say that things are a little better now than they were a few months ago. It’s not dramatic – it isn’t “Hey, here’s an autism diagnosis – problems all solved” (and, to be honest, if it was like that then I’d be a little concerned because it’s so unrealistic), but it has made a noticeable difference to my life in a generally positive way. It’s slight, and it’s an upward trend rather than a continuous ascent (there are still a lot of sad and angry bits to work through), but it is, nonetheless, an improvement.

Liberation!

Sometimes,
It is hard, tough, stressful.

Sometimes,
It is difficult
And I wonder
If life will ever
Feel OK.

But…

Sometimes,
It is beautiful.

Sometimes,
The utter delight
At having found myself
And having discovered
Who I really am
And how my life
Is meant to be

Feels like it wants
To make bubbles
And light
And magic
And colours
And sparkles
And joyousness.

I rock back and forth
And it feels GOOD
And RIGHT!

I play with my toys
And sit on my feet
And flap my hands
And rub nice things
All over my face…

And don’t worry about
Speech
Or eyes
Or “doing it right”
Or what is
“Expected” of me.

Because

I finally have freedom
And permission
To be who I am.

It has been
A long time
Coming,

But I am very glad
That this
LIBERATION
Eventually arrived!

Allowing myself
Just
To be
Autistic me
Is sometimes
A very
Very
Beautiful
Thing.

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!