Autistic or Broken?

Yesterday, I put up a post on my Finally Knowing Me page on Facebook (feel free to like/share – it’s all public) about my levels of confidence of receiving a formal autism diagnosis. Before the first assessment I was 80% confident of getting a diagnosis, but 20% doubtful, but, since the first assessment, my confidence has plummeted and now the percentages are reversed and I’d say it was more like 20% confident and 80% doubtful.

Then there was some stuff about expectations and evidence, and how CBT taught me to use the evidence available to disprove my negative thoughts, but actually that’s a really bad idea because the evidence doesn’t disprove them, it reinforces them (there’s a whole blog post to be written about all that stuff at some point).

Something in the post triggered one of my friends to make a comment to the effect that I should remember that I wasn’t broken, but had a different way of seeing the world.

And that comment then triggered my head into realising what it is that’s so frightening about the prospect of not getting a formal autism diagnosis and being officially classed as autistic.

And it runs thus:

If I DO receive an autism diagnosis, and I do fulfil the criteria for being classed as autistic, then that diagnosis will effectively tell me that I have a different way of seeing the world. It will say to me, and to anyone else who cares to take any notice of it, that my neurology is different, that I have a different way of understanding people and communicating with them, a different way of organizing my body, a different way of perceiving light and sound and feeling and so on, and also that this difference has been there all my life (so it explains why my life has gone wrong in so many ways in the past) and that it impairs my ability to function within the bounds of “normal” society. It will also mean that certain things that have been interpreted for years as me being naughty, or picky, or a bit forthright, or disorganised, or lazy, will all now be explained by me just having a different sort of brain.

Conclusion: I am autistic.

However, if I DON’T receive an autism diagnosis, and I don’t fulfil the criteria, the reverse is true. I will not have that protective label. I will not be classed as having a different way of seeing the world. I will be considered, as I have been all my life, as a bit quirky and eccentric. Maybe I’ll manage to get a diagnosis of Sensory Processing Disorder or similar so that my sensory issues are recognised, but that will not help me when I lose my words and am unable to use the telephone. Maybe they’ll say I’m traumatised now, but not recognise my struggles as a child and I will know that I was simply really really bad while trying not to be. Maybe it’ll be back to just bipolar disorder and “ordinary” mental illness, but that won’t explain why my inertia is so high and my executive functioning is so poor. And, when I compare myself to those people who do have an autism diagnosis yet are able to hold down jobs or run homes or whatever, I will know that I can’t do those things not because my brain is different, but because I really am just a mess.

Conclusion: I am broken.

OK, it’s not quite as simple as that, because you have to factor in the fact that I am, evidently, very broken even if I am autistic, partly because I also have bipolar disorder and severe anxiety and so on, and partly because going undiagnosed and unsupported and trying to live a “normal” life for 45 years and suppressing my autistic traits has led to two major burnouts and been very damaging, especially to my mental health, which is shot to pieces. Being autistic doesn’t preclude brokenness any more than being non-autistic protects from it. And equally, there is justification for my difficulties in life as far as having mental health issues alone – my bipolar disorder is sufficiently impairing that it would probably have impacted upon my ability to work and care for myself even if autism had never entered the picture. Furthermore, it might well be that I have enough autistic traits to impact on my life significantly, even if I don’t fit the clinical definition or cannot provide enough evidence.

Add to that the imperfections of the diagnostic system, the fact that in my case it is relying on memories from many decades ago to fill in gaps about my childhood, the 40+ years I’ve been learning and masking and covering up all my difficulties and giving an Oscar-winning performance on the outside while falling apart on the inside, and it really isn’t an exact science.

But, even so, this is at the nub of the situation: if they say I am autistic then I’m not broken, but if they say I’m not autistic then I am broken.

And if I judge myself by non-autistic standards then I’m a terrible failure and my life has been a pointless disaster (but with caveats about mental illness) and I see very little hope for the future because I simply can’t work any harder or be any better than this – I am basically a broken, failed, weak human being and I always will be.

But if I judge myself by autistic standards then I’ve achieved an amazing amount and been incredibly strong throughout my life (even at great cost to my health) and I see that there really might be hope that I could live a gentler, happier life and achieve goals that are more suitable for me – in a few years’ time I could possibly be a mended, successful and strong autistic person.

And all this is swirling round my head at the moment, like some sort of primordial “soup”, out of which sentient life (or in my case, a moderately functional mind) might or might not eventually emerge. It’s almost exactly 6 months now since I had my first meltdown while away on a camping trip – 6 months ago I didn’t have even the vaguest notion that I would ever be thinking of myself as autistic, or that I’d even know a fraction of what I now know about autism, about myself, about my childhood, or about many people around me. At that point I just believed I was a bit tired and that life would carry on as normal once I got home.

So my head is trying to make sense of it all. I’m trying to work out the extent to which I’m autistic, broken, mentally ill, traumatised, and so on. I’m trying to find a health professional who will actually help me with all of these things. I’m trying to come to terms with the fact that I now identify as a non-binary autistic person. I’m trying to live through ordinary day to day life and remember to eat and so on. I’m trying not to let other aspects of my life (music, study, running and so on) fall completely by the wayside. And I’m still in the process of recovery from burnout and waiting to see exactly what level of functionality I will have once I’ve stabilised.

No wonder I get a bit wobbly from time to time.

The Other Realisation

In order to describe what the “other realisation” is like, I’ve been imagining my life as being represented by a house, with a couple of new visitors, who’ve never crossed the threshold before. I know it might seem a bit daft, but the analogy works so perfectly in my head that I’m sticking with it.

The house I’m imagining is set in its own land, one of those double-fronted places, with a driveway leading up to the front door. Round the back is a kitchen, and a rusting conservatory with a few plants that are not thriving and need a bit of attention. It’s not a mansion, but a place that at one point could have been a comfortable home, although it’s never really felt quite right and has progressively decayed over the years.

I’ve spent decades sitting in the slightly uncomfortable armchairs in the front room, staring at the wallpaper I didn’t like that much, but despite an extensive search I’ve never really found anything better or anything that actually worked with the way the light came into the room. The telly has always been at just the wrong angle for correct viewing, but I’ve never been able to get it quite right, and I’ve resigned myself to the fact that my interior design skills simply aren’t up to the mark.

Equally, round the back, I’ve never managed to stock the larder in the kitchen adequately, nor have I kept the plants in the conservatory in good order, and no matter how hard I’ve tried, and however nice I’ve made it, sitting in the conservatory has always felt a bit wrong, like I’m not really supposed to be there – like it’s not actually my conservatory. There’s a lovely view from the windows, but, like the telly in the front room, I can never quite see it properly, and I can’t quite work out what’s obscuring it.

The house had been this way for years. It provided shelter, and it could sometimes even be warm and a perfectly adequate home, despite its problems. But it never really felt like home. It was never quite “me”.

And then, in the summer of 2016, the first of the new visitors arrived. Somebody I’d never met before, but I knew, the instant I saw them, that we would be friends for life and that I was going to allow them to do anything they wanted to the house, despite the fact that I hate other people rearranging my furniture. This person, whose name is Autism, drove up the drive in a sports car, announcing their presence, and those who visited the house immediately noticed a huge difference there. The only reason the whole world didn’t know about this new visitor straight away was that I wanted to check they weren’t a figment of my imagination before I told the world that they’d showed up.

Autism took one look at the uncomfortable armchairs, the not-quite-right wallpaper and the angle of the telly and knew that I’d got the whole room wrong and that it would have to be completely redesigned and redecorated. They wondered how on Earth I’d spent so long sitting so awkwardly and told me that they weren’t surprised I had backache sitting on chairs like that, and eyestrain from not quite being able to see the telly, and sheer total frustration at not having ever found the only decent wallpaper shop in town.

So Autism set about redecorating the room. By October 2016 they had found the very best wallpaper and some chairs that, although not quite perfect, would do for the time being while the very best ones are being made. They had sorted the angle of the telly out, and the room, although it wasn’t finished yet, was *almost* perfect.

But only *almost* perfect.

And, once the room was so close to perfection, it was easy to spot the one thing there that was still out of place, that didn’t really fit, and didn’t really work. Only once the uncomfortable chairs had gone, did it become obvious that there was a small collection of ornaments in one corner that really shouldn’t be there. Not unpleasant ornaments, and ones that I’d had all my life, but not really right for this particular room. They just felt, in a vague sort of a way, a bit wrong.

And then the second visitor arrived.

But where the first visitor, Autism, was entirely new and I’d never met them before, the second visitor was somebody who, although I didn’t know their name, I’d known all my life. Had you shown me their picture 10 years ago I’d have recognised them easily, although I’d not have been able to tell you who they were. 20 years ago they’d have been familiar to me and I wouldn’t have known why. 40 years ago I’d have been rather surprised by them, but had they explained who they were in terms that a small child could understand I’d have known they were a friend.

I’d seen them, over the years, hanging about in the village, occasionally saying hello, but never introducing themselves formally. They’d ventured as far as the garden at the back of the house, sometimes leaving a gift on the back doorstep, for which I’ve been grateful, because their gifts have made me feel right.

And, in October, they finally noticed I’d left the back door open for them, and took their first, tentative steps into the house. They just quietly made themselves a cup of tea in the kitchen, then, while Autism was busy demolishing the front of the house, they gently watered the plants in the conservatory and moved them around a bit so that the beautiful view became evident. Eventually they quietly took the ornaments from their location in the front room and put them into the garden shed, where they should have been all along. They didn’t start shouting to the world that they were there, neither did they start tearing the place apart. They just settled in, knowing that I’d be happy to see them and quietly accept their presence when I was ready.

The second visitor’s name is Non-Binary.

And here’s where I break off the analogy and return to reality.

As I discovered I was autistic, I was so desperate to learn more and to find out what on Earth was going on in my life that I started to join groups on facebook. And I discovered that there seemed to be this huge issue with women being underdiagnosed because of the way autism presents in women and because of male stereotypes and all sorts of things (forgive me here if I’m getting stuff muddled – this, like so much in my life at the moment, is somewhat beyond my knowledge and experience, and the whole “gender identity” world is one that I have even less terminology for than the autistic world – I am so out of my depth with a lot of it that I’m treading water furiously just to stay alive).

Anyway, I joined a couple of “women’s autism” groups on facebook back in October, and my instant reaction was “Shit! What have I done? This is so so wrong. I am not a woman and I never have been.”

Let me try to explain. My birth certificate says “female”. I am, apparently, conventionally married to someone who appears to be a man. I am attracted sexually only to people with deep voices and scratchy chins and *redacted for the sake of decency*. These things are clear.

But, that isn’t the whole story. Until October I had not, since childhood, joined, or gone anywhere near, anything that was for “women only”. I will not enter the running races that are for women only. I nearly joined a menopause group on facebook earlier in 2016 when it became obvious that my perimenopausal years had started, but it said women only so I immediately backed off. I broke my own rule, bigtime, to join the autism groups because my desire to learn about autism was so strong. I wonder now whether I’ll be thrown out of them. I’ll take that risk, because, like being autistic, 45 years is quite long enough to pretend and to live the life that society expects rather than the life that works for me. I’m privileged enough (and grateful for that privilege) that I live in a place and have friends who are accepting of all these things and I can be open about them. I know this is massively lucky.

And so, when I “came out” as autistic, I was bound to be amused because there were a few of my friends who had been speculating that I would actually come out as transgender. Not quite, but gender identity is certainly part of the package, so they were close. And the more that I discover about this, the more it seems that neurodiversity and gender fluidity are in some way correlated (again, this is, at the moment, just a feeling and I’m working right at the limits of my rather paltry knowledge – all this is going to take some time to figure out).

Those who know me well have not been even the slightest bit surprised. My mother explicitly told me that the only times she observed me behaving in any sort of “girly” manner as a child was when I was with, and copying, schoolfriends. My best friend, a 78 year old male, has always accepted that we are just small boys playing together. My husband (he is, legally, a husband, though when we use the words “husband” and “wife” at home they always have quotation marks around them, and it’s no accident that my online nickname for his is The WonderSPOUSE) has been ticking the “other” box for gender for years when there’s one available, and is actually much more knowledgeable about gender issues that I am and has helped me to identify the closest term to describe what I really am.

And this isn’t about “being girly” or otherwise. It’s not about cutting my hair short or not wearing pink (which I never did anyway) or throwing skirts away or anything like that. Even as a woman I was quite happy not to be particularly “womanly” – I’ve not worn either make up or bras for two decades because of the sensory issues they cause me. My hair happens to be shoulder length at the moment – I’ve cut quite a few inches off recently to make it easier to deal with, but one of my favourite, lifelong, stims is hair twirling, so I need to keep enough to play with. These things are all surface, and I don’t see them as anything other than coincidental to gender identification. None of that stuff is the point at all.

But what is the point is that it is about feeling more right and more me. The sort of “gifts” that my second visitor would leave on the back doorstep would be such things as arriving at a coffee shop and finding that the toilets are unisex and not divided into men’s and women’s. Always, when this has happened, I know that I can simply go to a toilet that is the right place for me, rather than somewhere that is familiar but a bit wrong. On New Year’s Day 2017 I changed my gender and pronouns on my facebook account – it felt so very right and so very good, a real lovely moment in the midst of all the problems that we’re encountering with the medical profession while trying to get a formal autism diagnosis. It’s really hard to describe why this feels so good and exactly what I mean, and maybe, like autism, it’s going to take me a while to figure it out and the only people who will really understand in the meantime are those who have had similar experiences.

And, just as Non-Binary, my second, quiet, familiar visitor just tentatively made their way in through the back door of the house, I’m not, at this point, making a huge deal out of having finally realised the truth about my gender identity. There will be people in my life, I suspect, who will never come to terms with using they/their pronouns and will continue to use she/her, whatever I do because it is so far from their world view. At the moment I simply don’t have any more energy to fight any more battles – I have to stay alive, reasonably sane, and come to terms with so much other stuff that, for now, both sets of pronouns will sit side by side. My husband continues to use him/his pronouns for similar reasons.

Which is why I used the house analogy at the beginning. Discovering I was autistic has been a massive upheaval and the whole of the front of the house has indeed been totally redesigned – I’m almost shouting “autistic” from the rooftops to anyone who will listen and altering my life to fit round my autistic traits as fast as I possibly can. If you’d told me 6 months ago that I was autistic I’d have thought you’d have taken leave of your senses.

But if you’d told me 6 months, 6 years, or even 36 years ago that I was non-binary (or described what that meant) then I’d just have quietly agreed with you. It’s something I’ve always known, just like the view from the conservatory in my house analogy was always a lovely one – I just needed to move the pot plant in order to be able to see it.

So, in the space of less than six months I’ve redefined myself from whatever I was before to “autistic” and “non-binary” and as far as “coming out” is concerned, that really is now it.

Unless I discover that I’m actually an alien from the planet Zog and life gets any stranger than it already is, in which case I’ll have to write yet another blog post!!!

Different Language

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

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

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

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

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

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

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

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

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

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

Various Feelings

Relieved. So relieved it wasn’t my fault.
How different I was.
The times I failed.
The things I couldn’t do.
I’m just wired differently.
I always was.

Angry. So angry that it took so long to find out.
That nobody knew.
Expectations so high
I could never fulfil them.
Naughty and lazy.
That’s what I thought.

Contented. So contented to have discovered.
Found the real me.
At long long last.
Finally allowing myself
A more gentle life.
Recovery time.

Sad. So sad for the lost years of my youth.
Pretending, wasting energy.
Having to start over
Middle aged and tired.
Rebuilding
A shattered life.

Hopeful. So full of hope for a new life.
New strategies and plans.
Learning what works.
Better for me.
Being myself.
Finally relaxing.

Broken. So very very broken.
Always was.
Always will be.
Ambitions shattered.
Permanent.
Impaired.

Excited. So excited by the information.
Others are like me.
A new interest.
Obsessive learning.
Books and articles.
My life explained.

Scared. So scared by the newness of it all.
Going to get it wrong at first.
So much information.
New words and sensitivities.
Needing to explain
But I hardly understand.

Stimmy. So stimmy as soon as I allowed it.
The release as I give up on stillness.
Allowed to fidget.
Fiddle, chew, flap, rock.
Bash, jump, rub, sway.
Instinctive. Natural. Beautiful.

Frustrated. So frustrated with waiting.
For official recognition.
For any help at all.
For someone to see
What is obviously true
And to believe me.

Grateful. So grateful for a wonderful spouse.
Supportive through dark times.
Caring, and loving the new me.
Equally fascinated and obviously
Also wired like I am.
Our marriage explained.

Shocked. So shocked that this is the reality of my life.
Totally unexpected.
Just how many things.
Mind blown
By the massive revelations
About myself.

Calm. So calm for the first time ever.
I hadn’t realised
The world was so tough for me.
But now I do I can retreat
When I need
Into my own safe place.

Damaged. So damaged by the difficulties.
But nobody knew, not even me.
Trauma internalised.
Mental illness.
Will take time
To sort it all out.

Optimistic. So optimistic for the future.
Recovery and adapting.
Learning and strategies.
New ambitions and goals
Suitable for autistic me.
Making it work.

The Discovery

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am autistic.