One Month On

I have how had my official autism diagnosis for a month. In that month, life has continued to change almost as rapidly as it did before I was diagnosed. My father’s cancer diagnosis has obviously changed my priorities with regard to how I spend my limited energy over the coming months. My financial situation has once more become difficult and precarious and is causing me considerable amounts of anxiety. And I have, with huge regret, realised that I cannot, at this time, continue with the maths degree that I so badly wanted to finish, so it is time to let go, to stop pushing, and to admit that I have simply run out of time and energy.

Obviously, life is still a long way from where I’d like it to be. My sleep patterns are still poor, which is not great, but they’re better than they were a few months ago. I’m now managing to leave the flat around twice a week, which is a slight improvement. When I do go out I am slightly better able to cope because I am more aware of which strategies work for me and I’m learning to give myself more recovery time afterwards.

I have now started, very slowly, to eat just a little better than I have been doing, which is no bad thing, since I saw a full-length photo of myself recently and was slightly shocked at how thin I looked. I finally weighed myself a couple of days ago and discovered that I’ve lost a stone since last summer, simply because I have felt too sick and anxious to cope with food. This is not good – I was not trying to lose weight, particularly not in that way, and I am just lucky that I was in good enough physical condition to start with that my body could cope. I am also still drinking too much alcohol in order to cope, but am starting to try to cut down just a bit in order not to do too much more damage to my physical health.

However, despite all the difficulties mentioned above, the persistent insomnia, the struggles to go out, and the continuing dysfunctional relationship with both food and alcohol, there are signs that things are improving. My husband and several friends have remarked that they perceive my underlying mental state to be improved and, even though I’m still getting some extremely sad, angry, and regretful moments, I’m starting to accept things as they are in a way that I didn’t before my formal diagnosis.

There were several people who said, before my diagnosis, that since I knew I was autistic, they knew I was autistic, and my friends and family accepted that I was autistic, there really wasn’t any necessity for me to pursue a formal diagnosis in order to understand myself. What none of these people understood, however, was my need for validation, reassurance that I hadn’t simply imagined the whole thing, and the huge huge confidence that the formal diagnosis has given me. This might not be necessary for everyone, but for me it was essential. And it really has made a massive difference to my life.

The formal diagnosis also, for me, marked the end of the old life, and the beginning of the new one. The process of discovery in the preceding months was like a sort of introduction, perhaps an overture before the curtain was raised at the beginning of the first act, or maybe the preface before the start of chapter one. My old life has been demolished, and now the process of rebuilding can begin.

There is obviously a lot of relief that the process of seeking a diagnosis is now over, and I feel, even more than previously, that my life now makes sense in a way that it never previously did. As I predicted in the last few paragraphs of Why Bother, the diagnosis has finally given me full permission to stop regarding myself as a naughty, lazy, failure of a human being. I also feel liberated from the pressure to “succeed” that has pervaded my whole life so far. There is still a long way to go and I still, frequently, feel that I am not entitled to breathe the air and that the world would be a better place without me, but I am still only a month into the new life, and there’s nearly half a century of the old one to analyse, reevaluate, and reframe.

Furthermore, I have to go through the process of mourning the life I might have had if only it had been recognised that I was autistic before I got to my mid 40s. There are still difficult topics to tackle – the mental health professionals who failed for two decades to recognise it, my childhood, the incessant, triggering, references to small children when I try to research autistic traits, and where I fit, if at all, into the autistic community (I am used to being alone and to shying away from being part of any sort of group, and discovering that there are others who experience so many of the same things as I do is, for me, somewhat disconcerting).

But one month after diagnosis there is a calm, even more so than that I felt after discovery. I strongly believe that there is a very good chance that my mental health will, eventually, be better than it has been for decades, possibly even than ever before. I am already, after just four weeks, much more confident about describing myself as autistic, and feeling that I have a right to do so. I’m also treating myself much more gently than I did previously – because now I have official permission!

I’m certain there will be yet more phases to go through, and not all will be easy, but maybe, just maybe, I will eventually rebuild a life that works. And it will be a better life than the one that officially ended four weeks ago.

Recovery Time

I’m aware that I continue to be a bit absent from this blog at the moment. I’m finding getting the energy together to post is currently a bit more challenging than it has been, and the words aren’t flowing very easily.

I’d say there were probably several reasons for this.

1. I’m trying to get out into the world a couple of times a week at the moment – every time I leave the flat it uses huge amounts of energy and I need a lot of time to recover. But sitting in the dark by myself in a very small, cramped, untidy flat for around 14 hours a day on average isn’t very exciting, so I’m doing what I can to make life a little more interesting.

2. I’m using additional energy to communicate with my family following my father’s cancer diagnosis. I’ve fixed up to meet with him in a couple of weeks and that has become a priority for me.

3. I’ve finally admitted that studying maths is not going to happen for the foreseeable future, so I’ve been spending a little energy adjusting to that too. It was evident that it had become too much for me, but it was, to an extent, keeping my adrenaline levels up.

4. After months of really terrible eating patterns I’m making more effort to eat a bit better. I’m lucky enough to have a body that is remarkably tolerant of the problems my mind causes it, but I’m also aware that looking after it a bit is important.

5. I’m trying to sort out administration and paperwork and financial type stuff at the moment. Just because I’m falling apart and autistic and so on doesn’t mean that the electricity bills and so on stop. My husband is doing an amazing job caring for me, but he is only one person and I’m trying to contribute a bit to the running of our lives when I can.

6. My autism diagnosis is starting to sink in. I still need to go through my draft report thoroughly and get my follow up appointment arranged and think about the sort of support I need and so on. But, like giving up on the maths, the immediate and urgent need to produce evidence and the stress and adrenaline of pursuing the diagnostic process is over.

So, partly I’m trying to direct some of my attention elsewhere, but partly I’ve really seriously crashed energy wise. I tried to get up at 9 this morning, got as far as having a drink, then fell asleep on the sofa until midday. The months last autumn where I didn’t sleep at all are catching up with me now, the stress of the diagnostic process has left me exhausted, and I’m still considerably burnt out and trying to recover from what has evidently been an episode of severe autistic burnout. I currently need a lot of sleep, and even more rest, and as I’m using energy and executive functioning skills to try to eat regularly I have fewer resources available for turning on the computer and making blog posts.

I’m certain this is just another phase in the process, and the exhaustion is just something I have to deal with for now. My energy levels are very variable, and at the moment there’s nothing much I can do other than go with how things are and take the time I need to do the things that are most necessary.

I suspect this is all part of it. Discovering, in my mid-40s, that I am autistic is proving to be exciting, a relief, stressful, anxiety making, completely mind blowing, and, at the moment, utterly exhausting.

I’ll leave you with a few words (below, in bold) that I typed into the iPad the other day, but which I was too tired to turn into a blog post. Just the process of turning my thoughts into words is often hard enough, but then getting the right bits of computer and so on coordinated sometimes makes things impossible. Someone once suggested I should get an app for the blog – the thought of something so difficult (that sort of thing really is difficult for me) reduced me to tears – I’m sure my way of doing things is not the best, but the energy for learning something new simply isn’t there right now – new apps and things will have to wait until I’m better. My husband will testify that new computers and phones and so on have all led to meltdowns and tears and I resist technological change really strongly – even when it’s for the better – because it causes me such huge anxiety. I usually only change anything when I’m absolutely forced to!

I should add, however, that, just over three weeks after my diagnosis, I am continuing to feel a certain sort of “better”. I can already feel that although life will always be a struggle, there is an underlying mental wellness that I haven’t known for decades, if at all. And I now feel more confident in telling people that I am autistic and feel that I believe it myself much more. The process was difficult and exhausting, but, ultimately, for me, is already proving to be worth it. Accepting that I have a lifelong condition that will always limit me is not the easiest thing that I’ve ever had to do, but refusing to accept and embrace it won’t make it go away, it’ll just make my everyday life more difficult than it already is. It will take a while to work out exactly how best to live my life and to work out how to adapt it to make it as good as it can be, but having the formal diagnosis is already making that easier for me.

Yesterday,
I was out in town.
Conversation and coffee,
Socialising and shopping.

Not very much of the above,
Admittedly,
And nothing bad or especially
Difficult.

But enough
That

Today
I am quiet at home.
Tiredness and television,
Resting and recuperating.

Need so much of the above,
Always,
Even when I have had a
Good time.

Not energy
Even
To post this
On the blog.

Changed Life

My life is an interesting mix at the moment. I say “interesting” because one of my ways of coping with things is to be “interested” by them and to learn. Feeling emotions is, on the whole, difficult and complicated, and I’ve never received any training in how to feel things, so it confuses me somewhat. However, the education system I went through did provide me with ample training on how to learn and analyse things, so I tend to retreat into learning and analysis whenever possible. My head is wired in such a way that I have wondered all my life why school spent so much time teaching me the easy stuff (for example, mathematics), but so little teaching the difficult stuff (for example, what to do in a tea break at work). I realise now that that might be because many people don’t naturally go off and learn mathematics for fun just because it’s interesting, and most people seem to have some innate knowledge of how to cope with tea breaks and haven’t had to spend years observing other people to learn what to do and how to handle such problematic situations.

Anyway, there are two conflicting strands intertwining in my head at the moment. The shock of my father’s diagnosis (see Reactions to Diagnoses) is still very present (although now, over a week in, I am starting, slowly, to process it), and I’m beginning to work out how to adjust my life in order to spend some time with him during the next few months. I’m trying to focus on sorting out the practicalities of visits and arrangements at the moment, and my priority is to use whatever energy I can to do what I need to do in a timely manner.

But I’m also acutely aware that I currently have very limited energy. Interestingly, other things in my life have suddenly become less important. I have, for the time being, abandoned any thoughts of participating in running races. I am still very burnt out, and while I recognise how wonderful running is for me and for my health in general, what I need right now is to learn how to stop pushing myself and to rest. Coping with the overstimulation out in the world is something I’m finding difficult at the moment, and pushing myself into massive physical exertion only overtaxes my system further. I’m also having huge sensory issues with running kit, which is a different sort of fabric from my usual soft cotton t-shirts, and I cannot reliably wear such clothes at the moment without sometimes encountering waves of nausea. Furthermore, getting dressed at all is often still really challenging for me, so getting changed and changed again uses up so much energy that it’s really not a valuable use of resources. And that’s before I start on the hours of build up needed even to leave the flat at the moment! I fully intend to return to running seriously again, especially the long distances that are so fabulous, but I can easily put it on hold for now, while I recover. I need to get my energy back, work out how to deal with the crowds at races so I don’t end up crashing out of them like I did last year, and maybe I’ll ease myself back in via halves and marathons first, then return to ultras in 2018.

I’m trying to keep a bit of music going, but, for now, only familiar and relatively low pressure stuff. This time last year I was preparing to play solo Hindemith as part of a gig, and to perform a concerto in the summer, but this year I am sticking to a bit of gentle orchestral stuff and maybe a bit of fun chamber music should the opportunity arise. Nothing that requires hours of intensive practice or any great pressure – even the pressure of finding concert clothes and getting out of the flat to the gig and being surrounded by people and the sensory demands of the outside world is quite enough to cope with.

The other really difficult decision I need to make might well be forced upon me anyway soon. For years now I’ve been studying maths with the Open University. It’s been brilliant, but it’s also been a really rocky ride because my health has failed so many times over the years. Things have also changed massively with the way that the courses and degrees are organised and funded over the years, and for the last couple of years I’ve been desperately trying to finish my degree before it vanishes completely. The University have been very good, and the tutors I’ve had have been nothing short of excellent in their support, but I fear that I have now reached the end of the line. I cannot see how I can continue to work at the level I need to for the time being. Unlike running and music, however, which can be picked up when I’m better, I fear this really is the end for the maths. Had this happened 10 years ago I would simply have taken a year or so out then carried on, but that is now impossible (very long boring story to do with government funding, modules, student loans, deferrals, degree programmes and so on).

My husband is going to try to contact the OU and see whether there is anything to be salvaged (if there is, then we’ll do it), but that, in itself, is a problem because they will only speak to me and I’m not up to having the discussion right now. The problem with needing help is that in order to get help you have to be well enough to ask for help and if you’re not well enough to ask then you just slip off the radar and vanish – the same happened to me with disability benefits – I just gave up. I can’t contemplate any of it at the moment – all my energy is needed just for survival. Furthermore, any hopes that I would eventually “get better properly” and be able to use a decent maths degree (during the times I *can* work my marks are often high and might, with good health, have led to an excellent degree) to establish a good career, are now gone. The problems I have with energy levels and executive functioning and coping out in the world when surrounded by other people are the result of me being autistic and that is permanent. Just finding enough strategies to COPE at all with life is going to be a big deal – I now know that the possibility of a “successful career” is gone and that if I ever manage to work again it will have to be a very different sort of work from that I had in mind when I hoped to “recover” from whatever it was that meant I kept breaking.

So, life feels like it is changing rapidly. Priorities are altering, and the upheaval continues. My life, which, a year ago, I had been hoping to build up, has shrunk back down to something much more modest. Doing 100 mile races, performing concertos, and getting a good maths degree all seem to be in a different universe right now. My relationship with my family is in the process of changing significantly, my ambitions for life are undergoing a time of readjustment, and my entire identity has altered. I’ve moved from simply “not being very female” to actively describing myself as non-binary and I’ve discovered a world I couldn’t even have imagined existed a few months ago. It’s also still only seven months since the chain of events started that would lead me to discover, a few weeks later, that what I’d regarded as “normal” for the last 45 years was in fact “autistic”, and eventually to be diagnosed with Autism Spectrum Disorder just 2 weeks ago today. It is all really really life-changing.

Interestingly though, two weeks after diagnosis, my husband has remarked that for all the current problems in life, he perceives an underlying wellness in me that he hasn’t seen for a very long time. For all the upheavals, and all the strife, and the current difficulties, it would seem that the process of accepting who I really am IS eventually going to lead to a better life. It has become obvious from the “facebook memories” feature that for all my external optimism about life a year ago I was already really struggling, and the signs of impending burnout were already there – the life that I was still rebuilding was unsustainable, but I just didn’t know it.

And, now I am finally emerging from the diagnostic procedure itself, then, following shortly afterwards, the news from my father, I am starting to accept my changed life in a way that I wouldn’t have done previously. The angst I felt before diagnosis (even when everyone round me was telling me that of course I was autistic and go gently on myself and so on) is starting to recede and I feel, oddly, like a “more confident autistic”. For the first time in my life I am learning to take pressure OFF myself. For the first time ever, I’m able to tell myself that my head DOES work differently from the heads of most other people and that it’s true, what I mean by “tired” is different from what many other people mean by it (not all – obviously there are those who have other chronic conditions and illnesses and so on – I’m not referring to them, but to the population as a whole, to the people who CAN go out to work every day and so on). I am learning that being autistic means that my system gets exhausted JUST BY EXISTING, and I therefore need more rest than most people do. I am allowing myself to rest more FOR THE FIRST TIME IN MY LIFE, and I’m no longer forcing myself to constantly push through the bad feelings.

I’m finally letting go of the notion that I need to be all things to all people – I scroll past questions on facebook that I know I could answer, but sometimes I let someone else take the question because I know that typing a lengthy answer will tire me. I look at some of the posts and “advice” in the self-help and fitness related groups and books and I know now that this advice might work really well for neurotypical people, but that it doesn’t work for me because it doesn’t take into account that my neurology is different. Autistic people need a different version of the “self-help” manual – one that takes our neurology into account, one that recognises our differences and the extra work we need to put in in order to exist in the world and the fact that being with other people is utterly exhausting for many of us (maybe I’ll write one sometime)! I am starting to recognise that in order to stay well I have to question much of the “received wisdom” about life, and much of what I’ve learnt through the years. I need to adapt the advice, rethink the strategies, and alter my life accordingly.

And although I’d been learning lots and lots of this on my own, had disclosed my autistic status on this blog (see The Discovery) to anyone who cared to read it, being validated by a professional has, for me, given me the permission to change my life and to feel justified in doing so, which is why what happened two weeks ago today was so important. It turns out that even if the rest of the world was absolutely convinced that I was autistic and did everything they could to help and reassure me, the person who really needed convincing was me.

Reactions to Diagnoses

79-2017-01-05-13-36-21“Diagnosis” is a word that has featured rather heavily in my life recently, and even more so during the last couple of weeks. It’s a word that is loaded with all sorts of associations, both good and bad. A diagnosis can provide relief or despair, enlightenment or desperation. It can be something wanted and welcomed, or something that is most definitely not welcome and not wanted. But I would suggest that a diagnosis of almost any description provides information, and therefore the ability to make choices based on that information.

One of the first (and simplest) diagnoses I received was that of asthma. It was clear, once the doctor had assessed my lung function and made the diagnosis, what I needed to do. I was prescribed inhalers (and later pills), given advice about using them, and sent off to enjoy my new breathing capabilities (and new found ability to exercise). Once flu jabs were introduced I also started having one each year to reduce the likelihood of getting the sort of infection that might aggravate my already sensitive lungs. Although having asthma isn’t the greatest thing in the world, the fact that I received a diagnosis and can therefore get appropriate treatment is, in general, a really positive thing. Discovering that the reason I still had a persistent cough after many many months (I was drinking 2 bottles of cough syrup every day and not improving) was the result of my being asthmatic rather than having some more sinister problem was actually a great relief.

And so, a week and a half ago, I received my autism diagnosis. It’s not been quite as simple as getting a diagnosis of asthma, and the way I “use” (for want of a better word) the diagnosis will be very very different. It’s going to take quite a long time to work out how I live my life from now on and I’m going to have to continue to learn about autism, how it affects me and my life, and how I can best utilise my skills and compensate for my impairments to maximise my quality of life and productivity in the future. I’m already starting to adapt strategies that I’ve used for many years while coping with anxiety, depression, and bipolar disorder. I’m refining my notion of spoons (do read about Spoon Theory if you’re not sure what I’m talking about) and have already started to think in terms of “sensory spoons” and “social spoons” (thinking this way makes it easier for me to work out how much energy I have available for different sorts of activities). I’m considering how I can adapt the mood diary, which I’ve kept since my diagnosis of bipolar disorder, to include things relevant to autism – maybe how my various sensory systems are behaving, how good my executive functioning is, how exhausted I’ve been, what the state of my speech has been, how much my stimming has differed from whatever my “normal” turns out to be, and that sort of thing. I’m already certain that receiving this diagnosis is a positive thing and, although things are very difficult at the moment, I’m confident that they will eventually be easier as I adapt to my changed circumstances.

However, I was not the only member of my family who received a diagnosis last week. And I now have permission to say what it was that threw me into such a state of shock when I was told about it just six days after my autism diagnosis. I’ve been very much keeping quiet about it until I had explicit permission to mention it because we very much subscribe to Silk Ring Theory in our household, so as far as my autism diagnosis is concerned, I’m at the centre of the ring and I get to decide how to handle it and what I disclose. But somebody else’s diagnosis is entirely a different matter. However, this other diagnosis has affected me very significantly, and I hope that those who read this blog who are closer to it than I am will understand my need to mention it here.

A few weeks ago my father went for a routine health check with his doctor. Nothing very exciting – as far as anybody knew at that point he was a reasonably fit and healthy man in his 60s. Some blood was taken for a blood test, and when the results came back they were rather alarming. He saw a consultant just a few days after I received my autism diagnosis and received his own diagnosis – of advanced prostate cancer, which his consultant believes in his case will “see him off”. He then spent the next few days breaking the news as gently as he could to those of us who are close family members – my stepmother who was at the appointment with him, my mother, my brother, and me, followed by a few others. The prognosis is not fully known at this stage. There will be scans and histology and maybe biopsies (I’m not really very knowledgeable about all this stuff – though much more so than I was a few days ago). Current estimates vary between 12 months and (a “very slim chance”) 5 years (although there is always the tale of the outlier who survives much longer against the odds – it would seem that absolutely exact predictions are not possible). There will, obviously be treatment options discussed and weighed up, but the news that my father, who we’d sort of assumed would follow my grandfather into his late 90s, might well not reach 70, is a huge thing to absorb. My whole family is in shock, and my stepmother is in for a particularly hard time, for reasons it is not my place to write about here.

So, my life has been turned upside down yet again. My priorities are changing rapidly. I had hoped that after my diagnosis had sunk in, one of the effects it would have would be to go through some of the difficulties I had as a child, and also, particularly, some of the problems I’ve had with my father through my adulthood – many now obviously caused by undiagnosed autism and communication difficulties. For every event I’ve had with a boyfriend (such as that described in Mysterious Argument) there have been a dozen similar incidents with my father. I recall one from my late teens where we’d had “a fight” about something and I couldn’t explain any of it and I kept opening my mouth to speak to try to say something and couldn’t (I realise now that it was a nonverbal episode following a meltdown). There have been times throughout adulthood where communication has failed and not knowing I was autistic has meant that we have been unable to understand why things kept going so badly wrong. I was hoping to have years to go through all of this stuff and to be able to get back to the times when I was a younger child and my Dad was basically my hero, the one who was like me, and got me, and we could settle into a more comfortable relationship than has been the case through some of the more difficult years of my life.

But that now has to happen soon. I am already making plans to go to visit (he lives some distance away) and my brother is trying to work out how to organise things so that I can manage them. Considering I’m only managing to leave the flat around once or twice a week at the moment, it’s going to use a very great deal of energy. My father is, predictably, handling the whole thing by learning, and researching, and finding out all that he can. He’s taking a very practical and philosophical approach to it all. Exactly as I would have expected. One of the other reasons I’ve been silent on this blog for much of the week is that all my communication energy has been taken up communicating with my family. I spoke to my mother on the phone (she’s the only person I usually speak to at all on the phone, so that was reasonably smooth), and also to my brother (my words started to fragment somewhat, so we’ve now returned to e-mail), and my father and I have exchanged e-mails with things we hope to do together over the next few months. I hope I can find enough of the right words to say the things I want to say and to make some good memories for after he’s gone, because through all the difficulties and so on, he’s still my Dad and…

My reactions this week have been, maybe, predictable for someone six days out from an autism diagnosis. I described in Sensory Reaction how my system initially responded to the overload in my head. My husband worked only part of Monday in order to keep an eye on me, and to try to make sure I ate. Monday I basically felt completely numb. Tuesday I spent almost entirely dissociated, with no hope of any sort of functioning at all. By Wednesday my words were fragmenting and disappearing. Only yesterday afternoon did I regain any semblance of functionality, and it’s still very very brittle.

In a perfect world I would still be processing my autism diagnosis at this point, but the world is very much not a perfect one. I am, however, trying to use my father’s diagnosis as information to guide my actions (just as I take inhalers for asthma and just as I am learning to adapt my life to living a way that works for me as an autistic). I am rethinking the things I need to do in my life over the next few months and will be trying to find some sort of a balance that gives me time with my Dad, time to keep myself as well as possible, and maybe works out a way to leave some other parts of my life available to me in some form in the future. There are things I can simply drop for now and pick up later (they’re the nice easy ones), but there are some things that might not make it through because I simply can’t manage them and the option to continue in the future isn’t there. That’s just the way it has to be. Life happens and priorities change.

Diagnoses really do change lives – in all sorts of different ways.

Cataclysm

77-2017-02-25-21-38-12It is now just over a week since I received my autism diagnosis. I had been hoping to “celebrate” that mini-anniversary today, but, as happens, life throws things in the way when you’re least expecting them, so I am having to devote a lot of brain space to dealing with something else currently. The week that has passed since my diagnosis is therefore, today, being “quietly noted” and little more.

If I am quiet here for a few days, then please forgive me. I might need a few days. My organization of my blog posts is also a bit lacking, and I need to do a bit of catching up with filing and sorting (when you find yourself using the search feature on your own blog to try to find out whether you’ve already posted that bit of writing you know you need to do a bit of sorting). Now that I have my diagnosis I’d like to make some sort of reference guide here (better than the Blog Guide) so people can follow the diagnostic procedure. I’m aware that new people have now started reading this blog and following it and might feel like they’re arriving part way through something. I’d really like to categorise and get the tags and so on a bit more useful, particularly for other autistic people and those who are keen to learn. I’ll try, but for now I need a little space. I’d also really like to write up last week’s assessment, but have not yet been able to find enough words and my head is still processing everything.

There is much to be done. I am trying to do what I can as well as I can as fast as I can, but my capabilities are currently not very good, so it might be slow progress. But I am very grateful for so much feedback and so on here, and for the people who have liked the facebook page and people I don’t even know who have said how much what I write resonates with them.

I wrote the words below a few days ago, with the title above. That title describes the state of my head right now, for several reasons. Things change. Autistic brains need lots of time to process change. In the meantime, they don’t necessarily work very well. I am doing my best. Please don’t ask any further – I’m not currently able to answer questions, and my capacity to produce words, even typed ones, has reduced again recently. I need a few days on the sofa, curled up under a blanket, rocking gently, staring at junk telly. My husband is, as usual, being magnificent, and caring for me brilliantly.

It still feels like a dream.
Like I will wake up at some point
And I will be in a tent in a field.

It will be summer 2016,
The point at which something was spotted
And mentioned, by several people.

After 45 years of a life that didn’t fit,
Full of difficulties and mental illness,
The truth started to reveal itself.

The more I learnt,
The more I discovered
That my “normal” was “different”.

I started to investigate my past
And found out
Just how many things tallied.

I started to adapt to my changed reality,
But needed a firm answer,
A piece of paper.

So I asked, and I filled in forms,
And I wrote down information.
120 pages of it!

I waited, and I endured an appointment
That nearly finished me.
And did not help.

But now I have the formal answer.
I know why my life has gone
So badly wrong so many times.

The process of discovery is over
And the rebuilding of my shattered life
Can now begin.

It feels surreal, like a dream.
It’s good. I know it’s good.
The relief at all now making sense.

But it will take time for everything
To feel “normal” again and for my head
To recover from the cataclysm.

Still Processing

75-2017-02-24-13-42-19I’m in one of those slightly frustrated phases right now. One where my brain really wants to get on and do things and to try to sort out my life, but my mind is still very very busy processing recent events. It’s now just after midday on Friday and I feel as though I should be able to “just get on with it” now, although I’ve just calculated that it’s nearly 96 hours since I received my diagnosis, and, when I put it like that, it’s no wonder I’m still trying to take things in and trying to work everything out. And when I then remember that I’ve never been very good at processing feelings, it’s even less surprising.

My week so far has run thus:

Monday: Five hour autism assessment in an unfamiliar town, concluding with clear diagnosis that I am autistic. Drive home and sit, almost unable to move. Sleep a little. Eat a little. Drink wine.

Tuesday: Utterly exhausted. Hardly able to process. Wrapped in compression bashing myself against the sofa. Short blog post written but unable to post. Good feelings, but not ones I can articulate well. Relief. Shock. It’s real.

Wednesday: A bit more functional. Able to post on the blog and write a couple more posts in draft. Sort the house a bit. However, start to feel ill in the afternoon and completely lose speech early evening. Speech never returns all night.

Thursday: Attempt to get up at reasonable time but fail. Head won’t work properly at all. Publish one of the draft posts. Afternoon lose functionality and retreat under weighted blanket. Attempts to sort out jobs lists fail. Plan to do stuff tomorrow.

Friday: Finally make it out of bed around midday after frustrating morning in bed. Realisation that things I wanted to do today are beyond me. Just getting this far is an achievement. I also had a spell trying to establish whether I was lonely or bored – I’m not sure I can distinguish between the two.

If I stop beating myself up (not literally – though the impulse to tear chunks out of my skin is very very strong this morning and is taking a lot of energy to resist), then looking at this objectively, I see that 96 hours out from receiving an autism diagnosis at age 45, it’s actually not that surprising. I know from what I’ve read on forums and groups and in books that getting a formal diagnosis is an amazing thing, but I also know that it takes some processing, and moods can be erratic for some time afterwards until the system settles down. My brain and my learning and my reading knows all this stuff. And, I have to keep reminding myself, AUTISTIC BRAINS DO NOT LIKE CHANGE!!!!

I keep forgetting this last piece of information, and I always believed myself to be quite flexible, but when I actually started looking at the evidence it turned out not to be the case. I need a new handbag – my old one is too small (since the advent of multiple pairs of spectacles and lots of stim toys). I have a new handbag. It is very nice. I like it. It will be a very good handbag. But the notion of changing to a different sort of handbag is freaking me out. Bigtime. The new handbag has been waiting for a month so far. I am too frightened to take the stuff out of the old handbag and put it into the new one, because I know it will feel wrong for quite a long time until I get used to it. Autistic brains. Change. Don’t like.

And, of course, this is why we get so tired. Conscious brain has to be employed constantly to compensate for the strong messages coming from the autistic bit. There is the neverending internal fight between what I have always termed “brain” and “mind”. In my head, always, I have had to employ vast amounts of willpower from brain in order to overcome the evident illness (some of which now relabeled anxiety caused by autistic brain) of my mind. The terminology is a bit muddled here I know – I didn’t script this and am trying to write improvisatorily, which is rapidly turning into nonsense.

Back to the script.

What I HAD been hoping to do today was: sort out the jobs list, order a repeat prescription, send a few of the more urgent e-mails (I really need to sort my study situation with the OU because time is getting short, and if I’m to dine in College after a meeting booked for next week then I have to sign in), maybe visit my best friend (haven’t seen him for a couple of weeks and also need to catch up on meetings and assessments and collect my scarf, which I left there), call my mother (again, update on assessment, especially since she provided so much info about me age 0-4 and some beyond that too), hoover the flat (it’s at the point where if we had a visitor we’d have to provide overshoes for them to protect their shoes, but the loudness of the hoover and my sensory system’s state today probably mean that’s out), maybe do some maths (concentration nowhere near sufficient – I’m managing less than a paragraph at a time of my book on my current special interest (Chariots of Fire) at the moment), and what I really wanted to do was to go out and get a coffee and cheesecake (way too late now because the early morning quiet spell will be long finished, but I haven’t had coffee for so long), get a few jobs done (I need to go to the bank and buy one or two things), and maybe go and look at some food and see if I can get inspired to eat anything (I’m currently still on only about 1.5 meals a day, which really isn’t enough).

Of course, lined up like this, it’s obvious that someone who has had the week I’ve just had wouldn’t have a hope of doing all of that. Maybe just being able to list it here will be a start on sorting out the jobs list and trying to work out what really DOES need doing and what can wait for a while.

It’s also been on my mind all morning that I’ve still not managed to get back to proper running. This is not surprising, since I’m still very much in burnout, and the diagnostic process has taken a huge amount out of me, but it’s now looking less and less likely that I will be able to do any of the spring races I still have booked. One of my favourite marathons is unlikely to happen, and with it will go the expensive hotel room I booked last year. I don’t have the energy to do anything about it. Maybe we’ll go and stay there anyway, although at the moment the thought of going to a crowded city to watch a marathon I should have been running in just feels scary. I’d rather be on a deserted beach staring at the sea by myself. I’ve known for ages that my first hundred miler, booked for May, just isn’t possible in my current state, but saying goodbye to it is hard, and to the other marathon I had booked. Again – although I have to do this, it’s change, and again, change doesn’t sit easily with me.

So add all that to the inevitable exhaustion from Monday and it’s no wonder things are a bit rocky right now. I’m also almost climbing the walls waiting for the report from the assessment people, even though they told me clearly and straightforwardly, that it could take up to a fortnight because there was a lot of material to go through and times and so on and don’t panic. But still. I’m impatient.

And, my head is, predictably, making words in a very erratic manner. There are either too many of them (see above) or too few (see below). Writing the words below was probably my biggest achievement of yesterday! Who knows what my biggest achievement of today will be – I’ll have to see what I can manage. But I also need to keep reminding myself that the biggest thing of my life has occurred over the last 6 months and that 96 hours ago it was officially confirmed, and my head will still be processing it all for a while yet and I do need a fair bit of time just staring at a pea factory, curled up under my blanket, and rocking back and forth and so on.

I
Am
Autistic.

Three words.
Define my life.

I knew that
Before the assessment.

But

Now

It is
Real.

Knowledge.
Relief.
Validation.

But also change.

My head
Still
Processing.

I am autistic.
I am autistic.
I am autistic.

Dear head,
Got that now?

I am autistic.
I am autistic.
I am autistic.

Yes, really.

What’s odd is:

Nothing is different
And
Everything is different.

The feelings
(Various)
Strong strong strong.

Huge waves
Of emotion
Alternate rapidly
With
Numbness.

I still need
To let go
And relax

But
Too soon.

Although
Yesterday
My words gone
All evening.

Let the news
Sink in.

Absorb it.

It is big.

Take
Everything

One

Step

At

A

Time.

A Tale of Two Assessments

74-2017-02-22-12-26-06Last time: less than an hour.
This time: nearly five hours.

Last time: fluorescent lights.
This time: natural light.

Last time: just show up.
This time: information given.

Last time: sent materials.
This time: they read them.

Last time: alterations, cancellations.
This time: arranged, confirmed.

Last time: deserted, abandoned.
This time: explanation, care.

Last time: distraught, tearful.
This time: relieved, contented.

Last time: traumatised, scared.
This time: reassured, helped.

Last time: confused, alone.
This time: enlightened, supported.

Last time: injured, devastated.
This time: safe, grateful.

Last time: violent bad feelings.
This time: calm gentle feelings.

Last time: caused more problems.
This time: solved many problems.

Last time: maybe brain injury.
This time: clearly autistic.

Last time: uncertainty and pain.
This time: acceptance and comfort.

Last time: seriously suicidal.
This time: tired but resting.

Last time: no point to life.
This time: a new start.