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.

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!

Extreme FOMO

The post about saying farewell to the strong woman actually started off with the above title, but it grew into something else, so I’ll have another go at talking about extreme FOMO here.

Just in case there’s anyone reading who doesn’t already know and hasn’t already googled, FOMO stands for Fear Of Missing Out, and it’s defined on Wikipedia as “a pervasive apprehension that others might be having rewarding experiences from which one is absent” and goes on to mention the anxiety of missing out on opportunities for social interaction, fear of having made erroneous decisions, and regret.

Of course, everyone gets FOMO sometimes. I think it’s unlikely that anyone reading this hasn’t, at one time or another during their lives, either missed out on getting tickets for a concert, had to pull out of a race injured, been unable to attend a celebration owing to illness, or simply had to turn down an invitation because they had to be elsewhere at the time – such is the nature of a modern busy life. There are, basically, so many interesting things to do in this world that it would be impossible to do them all and difficult choices have to be made.

Like everybody else who has several interests, I’ve spent my life trying to juggle what I can do and how I will be able to live life as fully as possible. I’ve tried, where I can, to say yes to as many opportunities as possible, sometimes taking my viola to a maths class in order to go straight on to a rehearsal afterwards, or going to visit friends and taking running kit in order to participate in a race while I was at that location, or calling in on family with a carrier full of rats because I was attending a show somewhere nearby. I’ve also had days where I could have been occupied several times over and have simply had to decline invitations to play in concerts, run races, attend tutorials, go to dinner, be at a pet show, meet somebody, or whatever, because I’ve already been booked for something else and being in two places at the same time just isn’t possible.

Then there have been the other times – the times when the energy has run out. I’ve had these times all my life, and increasingly so as I’ve got older, where I pull out of something because I’m “ill”. And this “ill” has always been some sort of “mental illness”, or an indefinable malaise, bad enough to keep me away from whatever it was I wanted to do, but from which I seemed to recover after simply staying at home and doing nothing for a while. I know now, of course, that this “illness” was actually utter exhaustion and the feeling I often get before a shutdown, before I collapse, before my words vanish, and before my body simply makes me stop. I have no control over it, any more than I do over the violent meltdowns that occur if I keep overloading my system and continue “pushing through” and looking for more “inner strength” that just isn’t there.

In the past, I picked myself up after each episode of “illness” (shutdown, or in longer cases, burnout), and simply started building up my activities again. In the days when I worked I would return to work, gradually start taking on more challenges, and start to rebuild my career. By the time I had become so ill that working wasn’t an option I would resume studying, start to play more music, or do other things, because I’m interested in stuff, I’m interested in life, and I don’t actually dislike being out in the world doing things with people – I just find it really really difficult. But difficult is no excuse for not doing something – I’ve never shied away from the difficult!

And so we get to 2013, when I started to recover again after a particularly tough patch mentally. I started to do a few things, gradually stacking them up, with the idea that if I could build up my hobbies to an extent that I was leaving the flat every day and things were going well, then I might start to think about going back to work again. So I did more, and more, and more…

However, what you have to understand about this “more” is that it was “more” in my world. I knew plenty of people who were doing the same amount of music that I was, who also had full-time jobs, who also cooked dinner for their kids every evening, who were also studying for professional qualifications, who also went running in the mornings before work, and so on. I compared myself to them, and I knew that even with the amount I WAS doing, I was falling a long way short of a “normal life”. I wasn’t doing anything that wild by the standards of the people I was spending time with.

But I was getting tired. Really tired. Again. As soon as I got to any sort of level of activity that was approaching “interesting”, I started to suffer from this weird malaise once more. And, eventually, in August 2016, I fell to pieces.

And then I discovered I was autistic, and then I started to learn, and then it became obvious what was going on and why, every time I increased my activity levels, overtaxed my sensory system, or spent too much time with other people, I got ill.

So now I have to make a complete reevaluation of my life. I have to forget trying to “be like everybody else”, something that I’ve always found so incredibly difficult anyway. I have to try to kick the habit of turning up to a maths tutorial in running kit with my viola and a carrier full of rats, because far from being able to do a degree assignment and run a marathon and play in a concert and attend a show in the same weekend (which is probably more than most people would consider doing in any case), I am actually LESS capable than most people of doing all those things at once. Looking back, I’m not quite sure how I managed to do so much of so many of them for so long – sheer bloody-mindedness I think, and, of course, I’m now paying the price with a severe episode of burnout and rather dramatic loss of functionality. Maybe I can excuse “past me” for breaking “present me” so badly because “past me” didn’t know about autism, but there is now no excuse for “present me” to act so recklessly and break “future me” because I now have the knowledge and the responsibility to my future self to act on it!

So the life I rebuild from now will have to be different. If I thought juggling my diary was difficult before, it is now much more so, because I need to leave rest days between social events. I need to limit the number of concerts I can play in. I need to ask people for adaptions in some cases (which I absolutely hate doing, but the only alternative is to give up doing stuff completely). I have to decline invitations. I’ve already had to pull out of races, miss concerts I wanted to play in, miss meeting up with people I’d like to see, abandon my degree. I keep ignoring e-mails in my inbox that advertise things I want to go to, gigs, concerts, both listening and playing, festivals, events. I delete them and try to forget that I really want to be there but I just can’t go because I don’t have the spoons. I have to decline opportunities because they occur in the same week as something else I want to do, even though they don’t actually clash. During the next fortnight I have three things in my calendar and I know that I’ll need to sleep for a week afterwards just to get over the exhaustion.

And this makes me sad. This, for me, is one of the saddest parts of discovering I am autistic, of knowing, finally, what has made me so ill all these years, that my senses simply won’t cope with that much time out in the world, that every time I go to a party and chat to people I’m running my battery down, that if I want to go and stay away from home I’ll have to have special arrangements, separate eating if the dining hall is too noisy, not be able to contribute properly, fully, be “doing it right”.

I don’t much care if people laugh at me if I flap my hands in public. I don’t much care if folk think I’m “weird” (what the hell, I’ve been “weird” all my life and I’m used to it). I don’t mind if people have to correct me because I haven’t quite “got it” or if I don’t have very many friends (despite a glorious online presence, I see very few people in real life, because of the aforementioned energy problems). I don’t even care that much if I have the odd meltdown from time to time – they’re not much fun, but they finish eventually. I’ll find ways of compensating sufficiently for my poor executive functioning so I can survive, and I’ll eventually work through the anger and sadness at how my life was pre-diagnosis. And I certainly don’t care about nonverbal episodes or the absolute compulsion to eat nothing but white food for months on end – no big deal, speaking is hard work and white food is the best! Those things don’t worry me.


Yes, the FOMO bothers me very badly. The fact that I want to go and do stuff, but I have to limit myself if I’m to stay anything approaching “well”, and that I have to do that for the rest of my life, really does bother me. I have to turn down interesting stuff I really want to do – in order to spend the day on the sofa, bored out of my mind, scrolling through facebook and watching the telly because it’s all my stupid head is capable of doing. I have to regulate my life, I have to leave things I’m enjoying because I can feel my senses getting overloaded. I have to budget my spoons really really carefully or I’ll be able to do even LESS. That bothers me BIGTIME! I have lots I’m interested in, lots I want to do, and yes, even lots of people I want to see. I was already having to turn down opportunities when I was at my very best, and now I’m having to turn down even more.

Furthermore, I’m going to have to miss out on things such as drinks receptions, tea breaks, trips to the pub after concerts and so on. And these are the places where the networking happens. These are the places where someone comes up to me and asks if I’d like to play in a string quartet next month, and I won’t be there to be asked. I also fear that, having spent the last 3 years building up as a musician again, I’m now replying (eventually, in some cases) to say that I’m really sorry I can’t play in the next concert, and eventually people are going to stop asking me.

And the memes keep coming, telling me that autistic people shouldn’t be limited, and that great things can be achieved – but they don’t really work for me. I’ve had “no limits set” all my life and being autistic (and mentally ill, yes) has limited me anyway. When I’ve ignored the limits my own system has placed on me the effect has been catastrophic. This was not from some external agent, it was simply my own system breaking.

So now I have to learn to live a gentler life, to ask for help (which I hate), to decline invitations to things that I really want to do, and to limit myself because I know now that I can’t function like most people can, and that trying to make myself do so is really damaging to my health. Thus far, the FOMO is possibly one of the things that bothers me most about discovering I’m autistic, the knowledge that I will have to limit my life and as a consequence I will miss out on things I really wanted to do, whether they be concerts, races, studies, camping trips, rat shows, lunch with friends, dinners out, or whatever. I know I’ll be able to do SOME of these things and I will learn strategies to cope with many of them, but the need for rest in between is not something that sits easily with me. I’m not good at resting, I don’t like it, but I’m going to have to learn to do more of it.


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.

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

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

But enough

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

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

Not energy
To post this
On the blog.

Career Snake!

63-2017-01-02-18-20-57The statistics are, it seems, pretty grim. I haven’t verified the numbers, neither can I give you any details about how many of those considered are formally diagnosed or anything, but I continually see figures indicating that only around 16% of autistic adults are in full-time employment and 32% in any form of employment at all. Even if we allow for quite a lot of error in those figures and consider that there might be people who are unfindable by official statistics compilers, it would still turn out that the proportion of autistic adults sustaining employment is pretty low, and that many of those who do have jobs are working well below their capabilities skillswise owing to the social, sensory, and organisational demands of most jobs.

I have been sliding down the career snake all my life. Despite my issues at primary school and continual bullying through secondary school, I did manage to get quite a good bunch of qualifications, as I mentioned in Expectations Gone. Admittedly, I dropped out of my first degree course, having entirely failed to do what was expected of me or to settle into any sort of proper work routine, but I did manage to succeed second time round and graduated with a good degree. Had you known me in my late teens and early 20s and looked at my qualifications you’d have predicted a bright future for me as far as employment was concerned. The Strong Woman mask also projected an air of confidence that would have added to this impression and it looked, back then, as though I was headed for great things – all I needed to do was put in the work and everything would be fabulous!

However, it was not to be. I did put in the work, lots and lots and lots of it. I based my ambitions on trying to find a career I loved that was compatible with the qualifications I had, and I worked and worked and worked at it. When obstacles were put in my way (I didn’t receive funding to do my master’s degree) I did everything I could to overcome them (got a job to fund myself through and took out a loan to pay the fees). I went without food and heating to save money in order to carry on studying to become an academic because that was the career I really wanted, and I worked until I could work no more.

I had fallen into the trap of believing the idea, still perpetuated today by some of these awful “life improvement” memes, that if you wanted something badly enough and you worked hard enough for it, you would get it.

That is, of course, a fallacy. You are unlikely to achieve your goals if you DON’T work for them, true, but you can’t reverse that statement and say that working for them means you WILL achieve them. It’s simply wrong.

But back then I believed that working hard was the solution. So I did. And by the time my ill-fated DPhil degree studies started to fail I was almost at snapping point with anxiety, financially in trouble, drinking heavily, and dissociating regularly. I didn’t know then that what I was experiencing was dissociation, but I do now. It was with considerable sadness and regret that I abandoned my studies, and with them my dreams, and decided that I simply couldn’t manage to achieve what I’d so badly wanted.

At that point I had no idea that I was even mentally ill, although I evidently was, very. I had no way of asking for help because I didn’t know what sort of help I might need. I had no concept that I had impaired executive functioning and organizing my life and trying to take care of myself while studying almost unsupported and while chronically short of money was simply beyond my abilities. I had the exam results and I believed, therefore, that the only reason I was failing was that I wasn’t putting in the work. It was the only reason I could think of.

A year later, armed with my original degree, I enrolled on a PGCE course. If I wasn’t going to be able to do research and teach undergraduates then I would modify the plan and teach schoolchildren instead. I turned out to be a pretty good teacher. I did well on the PGCE course and got my first job easily (my qualifications were somewhat over the minimum requirements, and my ability to teach “shortage” subjects proved useful). I started my new career, confident that this time all would be well.

Less than three months into the job, all was not well. There was definitely something very wrong with me. I was struggling. I went to my head of department and told him that things weren’t right. He told me that people as clever as me didn’t have problems and I’d be fine. I upped my work level to try to compensate for the things that were going wrong. It didn’t help. I went back to school after the Christmas holiday period and by February I went in search of a doctor because I felt so ill. I got to the surgery and collapsed onto the floor, hardly able to speak. The doctor picked me up and let me recover and I was then signed off work with “debility”. Nobody could really work out what was wrong with me, but I was clearly very unwell. The “debility” label was changed to “anxiety and depression” shortly afterwards and I entered the world of the mentally ill.

I decided that maybe that school had been too unsupportive for me and got another job in a very different school. I did slightly better for a while, but while there my mood started to become chaotic and elevated, and I went into a hypomanic phase (again, not known at the time, but obvious with hindsight). I was also still unable to survive financially – my starting salary was insufficient to cover the rent on my London flat and to service the massive debts I’d incurred while studying. So I applied for a promotion to Head of Department in another school, and got it!

Only a few weeks into the new job I had the breakdown that is now known as “the big one”. It is now evident that I was also in a period of huge autistic burnout. I made my first serious suicide attempts that autumn. My health was destroyed. I never fully recovered from that time, and the slide down the career snake accelerated massively. My days as a high flyer were over and it became a matter of “damage limitation”.

After I’d recovered sufficiently to rejoin the world, helped by my newly acquired husband, I did a bit of supply teaching, and got a part-time job for a while, but I wasn’t really up to it any more. I then had a succession of office jobs – administrator, data entry clerk, personal assistant, and eventually part-time administrative assistant in a small office. All of these jobs I found hugely exhausting and very very difficult. I would be struggling to drive home after a few hours at a part-time job, my eyes almost closing at the wheel. It didn’t matter how early I went to bed or how much exercise I took or how well I ate. I was just knackered. All the time. I finally went off sick from the last job, having, by this time, received a diagnosis of bipolar II disorder, and at the last meeting I had with my boss, the person from occupational health, and the personnel officer for the job, I was almost completely unable to speak. I had come to the end of my office work abilities.

Having failed as an academic, a schoolteacher, and an administrator, I had one last attempt at earning money for myself before succumbing to another cycle of hypomania and depression and breakdown. I answered an advertisement in the local newsagent from a woman who needed a cleaner one day a week. In some ways it was quite a good job. Although the pay was poor and I worked 5 hours without a break, I was often on my own, and I was quite good at it. It was hard physical work as I was expected to do the whole house, change beds, completely clean several bathrooms, and leave everything pretty much immaculate, often after the family had evidently spent a weekend partying. Eventually, however, 5 stone overweight from the quetiapine I was taking, my back and hip gave out under the pressure, sacroiliac pain radiating throughout my body, leaving me unable to walk, let alone clean an entire house in 5 hours. The woman also gave up work temporarily to have another child and I found myself having to cope with people around me and the new baby while I was working and it really wasn’t worth the pain and the triggering effect of the children in order to earn somewhere around what was minimum wage at the time.

By then I had a psychiatrist and a community psychiatric nurse. Both helped me back to some semblance of a life, and I gave up the idea of working completely because it was obvious by then that I wasn’t well enough. I recovered enough to do a part-time language teaching course, but the experience of the course left me needing months to recover. I started studying mathematics with the Open University in order to try to do something with my brain and, rather ambitiously, against all medical advice, did some supply maths teaching in a local secondary school. On the morning of my third day in the job I sat in the school car park in tears of utter exhaustion, knowing that it wasn’t going to work. I loved the job, I wanted to do it. I wanted to be out in the world, teaching, being part of something. But I just couldn’t. Every time I tried I just fell apart and felt so horribly horribly ill the whole time.

I have not worked since I left that job 6 years ago. For nearly a quarter of a century, while many of my peers were climbing some pretty impressive career ladders and becoming academics, businesspeople, scientists, professional musicians, headteachers, top administrators, and so on, I was sliding down my career snake. And no matter how hard I tried to climb back up the snake, the gravity was too strong. And every time I grabbed at a rung of an adjacent ladder, the rung broke and I slid yet further down the snake, before eventually falling off the bottom of its tail, onto the floor.

And it didn’t ever quite make sense why this kept happening, why I couldn’t keep the jobs. It didn’t add up that someone with my qualifications and evident abilities and absolute fierce ambition and desire to work and preparedness to graft and to put the effort in, couldn’t keep even the simplest of jobs. There seemed to be no reason why things just kept going wrong, time after time after time.

Even bipolar disorder didn’t explain it. My bipolar disorder is cyclic. I have hypomanic episodes every few years which lead to crashes into depression. Between those times I am usually stable, moodwise. I have also taken effective medication and developed strategies to help with managing my mood. The treatments and therapies I received for bipolar disorder did, in general, work for bipolar disorder.

But even in the stable times I was still getting sick, and sick in a different way, not a mood way, but an utter exhaustion and unable to cope and having to go off and be silent on my own sort of a way. In a way that has been a mystery for years.

Until I discovered I was autistic. And suddenly those things make sense. And all the failed careers and the lost jobs and eventual unemployment have an obvious cause. Throwing myself constantly into such busy overstimulating environments for years and years has, quite literally, broken me, over and over again. I never had a hope of doing most of those jobs – not because I’m lacking qualifications or not making the effort, but because I am simply unable to cope for extended periods of time in environments that are so hostile to me.

Phased Process

62-2017-01-12-19-01-27I hope you will forgive a somewhat long and indulgent post today. Eventually I’d really like to produce material that will be helpful and instructive and so on, and I might even, once I have things straight in my own head, produce a book, or maybe even another, more “generally informative” blog. There are so many issues that are so important to investigate and to consider – everything from how best to nurture autistic children, through to how to support those even older than I am who make the discovery that they are autistic; a whole range of traits including communication issues and sensory sensitivity and executive functioning and so on; and a huge amount of discussion to be had on all manner of other issues that are only just finding their way into my head and I can’t even quite find the words for yet.

For the time being though, I’m still in the process of trying to get my own life sorted out, and some of these writings form part of the process. I currently have no support from the official services at all, no counsellor, no therapist, nothing, and so I’m aware that I sometimes use this space in lieu of such support. So some of what I write might just be pure waffle that I needed to write somewhere and here was as good a place as any. Some of the time I’m just trying to get things straight in my own head.

In the last week or so I’ve noticed things have changed again. Since the appointment date was fixed for the next assessment (my third try at getting a formal autism diagnosis after the first assessment was stopped by the assessor and the second one was cancelled) I’ve become noticeably more anxious again. My appetite has plummeted, having recovered somewhat, and I’m finding sleep less and less easy again.

However it does feel different from the last time I was waiting for my appointment, for several reasons, and I’ve been trying to understand why. I’ve also been looking back over the last six months, which seem to have comprised a series of “phases”, all of which have felt slightly different, and, I suspect, are part of the balancing process as my autistic neurology comes to terms with discovering, er, my autistic neurology!

The irony of discovering that my head isn’t very good at coping with change by discovering that I have the sort of head that isn’t very good at coping with change and having to cope with the change that ensues from that discovery is not lost on me!

So, we go back to July 2016. Back to the days of “normality”. Back to the days when everything felt ordinary, much as it had done for most of my life. A knowledge that I wasn’t well again and was possibly heading for another breakdown. A confusion as to why I couldn’t get my act together. And a general constant low level depressive mood and anxiety that I was so used to that I didn’t even notice it. I had a figure “zero” on my mood chart, meant to indicate my “norm”, what I regarded as a euthymic mood, but, in retrospect, it was far from “normal”, just what I was used to, as I eventually realised a couple of months later. During those times I would wake each morning feeling the usual struggle, the usual wonder what the point of it was, and the usual knowledge that everything was difficult and hard work, but that was just the way it was and things had to be done. That was normality.

And then we get to August, and going away from home. And my mental health (as I assumed at the time) starting to disintegrate. And, despite the few rumblings earlier in the year and a general “bit eccentric” sort of idea in my head, the “polite disbelief” at the initial concept of being autistic, exacerbated, I suspect, by me not really knowing what being autistic actually meant. I had no more knowledge than most of the rest of society at the time, possibly even less, owing to not having any children and being so uninvolved with the world. But by this stage I felt so absolutely dreadful that I was prepared to listen to almost anything to try to work out why my life kept going so very very wrong, and when you find yourself, as a 45 year old, behaving in a way that would be more naturally associated with a stroppy child and you have no way of controlling it or stopping it, then maybe it’s time to try to find out why.

So there was this initial feeling of disbelief. And also of the notion that I probably wasn’t actually really genuinely “autistic”, but just had one or two traits. I was one of those folk who was just a bit sensitive to life and because I was so mentally ill I just didn’t cope very well. I didn’t think, initially, that I would ever actually define myself as autistic, but saw the suggestions as merely an extension of eccentricity. Again, I still didn’t really understand the nature of the autistic spectrum, and neither did I have the first clue how many of my “eccentricities” would actually start to be revealed as autistic traits as I started to research.

And then I read the book with the list of traits mentioned in The Discovery. And started to take things somewhat more seriously. And went from “this is a side issue that might be useful to be aware of but things will get back to normal soon” to “mind blown, this is my entire life turned upside down”!

And the “polite disbelief” turned to “polite belief” turned to “******************” (there is no word that adequately describes suddenly discovering, after 45 years, that your entire life has been governed by your having a different neurology from the majority of the population, that you’ve been fighting all your life, and that you’ve discovered all this in a matter of weeks and your entire world has completely changed)! And there was huge huge huge shock. And even more huge shock as I started to research just how MANY autistic traits I had, and started to discover about all sorts of things that I thought were just me, weren’t. The whole “autism nicked my schizzle” phase!

And I went from waking up each morning wearily wondering how much more of this difficult life I could take, to waking up (when I managed to go to sleep at all) with my heart pounding so hard I thought it would actually jump out of my chest and this word “autistic” just swimming, almost meaninglessly, round my head. The whole sense of shock and disbelief and whatonearthisthisaboutthen still raging through my system. A bit like when someone dies and you get those few seconds each morning before you remember and then you suddenly remember it all over again and your system goes into shock once more.

And by this time it was early September. And I was struggling to cling on to anything normal at all or to think about anything other than autism, and my Amazon basket was full of autism books and I couldn’t eat or sleep or do anything because my whole system was so utterly overloaded. I went through lists of traits over and over and over. Read blogs, books, anything I could get my hands on. My entire world became about autism, almost to the exclusion of everything else.

And hardly anybody knew what was going on. My husband. A handful of friends. The whole thing seeming so utterly implausible that I couldn’t possibly mention it. I was trying, even, to work out how to even comprehend that I could ever even imagine that I really was autistic. It was surreal, like I was on some sort of weird drug that made the world feel like a total dream. Shock shock shock. Huge shock. What? Me? Really? Over and over. This shock. So obvious. So so obvious. But such a huge shock. Why did this take so long? What now? What even is it all about? My world collapsing.

Then I went to see my doctor, my GP. And the minute we mentioned the word she said “Of course!” and it was totally obvious to her too. And then I entered this time of huge relief, and we started to go back over my life, over 4 decades of memories of stuff happening that had never been explained, and suddenly it was all explained. And I started to chat to a very tiny group of people, and started to unpick my life and started to work through it all. And the feelings kept coming, and I tried to describe them in Various Feelings, and we started to wait impatiently for the formal diagnosis to arrive.

And for most of September and October I hardly slept. And hardly ate. I spent the night times, slightly bizarrely, googling pictures of goats and posting them on my facebook wall. My husband brought me food each day and I nibbled at what I could, which wasn’t very much. My system was in such shock that I could barely function. I cancelled almost everything in my diary as my system just started to close down. I realise now that this was going into burnout and all my energy had just gone. My life seemed so totally crazy and totally different. And I kept wondering if anything would ever feel even vaguely “normal” ever again. And to top it all, the hot water broke in our flat and our living conditions descended from “chaotic” to “borderline disastrous”!

Oddly though, around September time, something else did happen which showed just how much of a toll the masking had been taking. Although I was in a really really strange state, the general level of depression lifted massively. Simply knowing, and understanding, took a whole level of depression away. This, I suspect, was the depression caused by acting, by suppressing who I really was, and had been with me for so long that I didn’t actually notice it was there until it lifted. There was also this sudden feeling that I could be gentle with myself and could stop the frenetic pushing to do everything and to be everything to everyone and to achieve achieve achieve, which had been the cornerstone of my life.

And then I discovered that if I stopped trying to push in that way that I could let myself relax in a way that I hadn’t done before and that if I stopped trying to sit still then my body moved in ways that society had told me for years were strange but from the inside felt totally right. And I spent up to two hours a day rocking and bashing myself on the sofa and all sorts of things emerged from me (I’ll do a post about it sometime) that had been there all along, hidden, just waiting under the surface to be allowed out. I discovered that even after 4 decades of learning and suppression, all my autistic behaviours were there and that all that had happened by me not flapping my hands or by making myself cope with sensory overload to appear “normal” was that I’d been getting progressively more damaged and ill and had sometimes used maladaptive strategies such as alcohol to try to deal with the anxiety.

And all through the autumn I gathered evidence for the assessment, which was set for the end of November. I called my mother and learnt things about my early childhood that I hadn’t previously know and which provided yet more evidence for the “autism hypothesis”. I read book after book, all of which confirmed it over and over and over. And anxiety was heaped on top of anxiety. And the only way I could settle at all was to drink and stim (note: do not inadvertently flap hands while holding a glass of wine – it doesn’t end well for the carpet or the wine)! And there were so many other things going through my head – sadness and anger and relief and excitement and things I’ve written about before and still can’t quite explain properly.

And then the first assessment came and the ensuing disaster plummeted me into crippling depression at the start of December (the full story is in part B of the Blog Guide). I had a series of long shutdowns and episodes without speech, and eventually the spell was broken and I went from no sleep to oversleeping and gradually starting to eat again as my body started to try to repair itself. That phase is the one that has recently ended. And then I made the decision to go public about being autistic and started this blog.

At the start of December I wrote about how Time Stood Still, and I was still in a state of disbelief and still felt that I would, at some point, wake up and it would be August again and I would just have had a really strange dream. I’d gone from disbelief, to tentative belief, to huge shock, and massive relief, and lifting of long-normalised depression, and enormous anxiety, to crushing devastation and invalidation, to starting to fight back, and still my head wasn’t really there, wasn’t really prepared to believe I was autistic without a diagnosis.

But things are different again now. Partly because it is a different year and we have been through the annual time of the short days and I am now, just occasionally, starting to notice the outside world again. Partly because I survived the very very bleak times following the first assessment. Partly because I am now publicly autistic and the reaction to my disclosure has been so overwhelmingly positive and accepted that it has gone a long way to help with the damage done at the first assessment. Partly because I have now learnt so much about autism and am finding strategies to find my way through and have started to engage with the autistic community and to discover how many of my own issues are common to other autistics. Partly because I am not now viewing the forthcoming assessment as a definitive point – I’m aware that getting a formal diagnosis might actually be a long and arduous process and from what I have read, this is not unusual in older people, particularly those assigned female at birth. Partly because there are indications that I might be emerging to some extent from burnout and I do have slightly more functionality than I did a few months ago. Partly because I am starting to learn what my autistic traits are and am learning to work with them rather than fighting against them.

But possibly mainly because I am now writing about being autistic and producing my own narrative to help with the process of discovery (and occasionally writing long indulgent posts like this one). I am learning to talk about it in a way that I would have found unthinkable back in September when even typing the word “autism” into a search seemed so alien and scary that I’d have to go for a little lie down afterwards to recover. I am finding out that going through this huge range of emotions from ecstatic jubilation to suicidal depression is “absolutely normal for the newly-discovered middle-aged autistic” (and probably newly diagnosed autistics of all ages and, to an extent, their carers too) by continuing to read. And, I’m starting to think about a way forward and very very gently getting back to one or two things that, to me, signify “normal life”. It’s slow, and the path is very wobbly and up and down, but it is going, gently, in the right direction.

None of it is particularly easy. And my autistic brain is still fighting furiously with my knowledge brain as they try to reach some sort of equilibrium in my head and sort out what on Earth to do about everything. But I sometimes think that they might, eventually, find some sort of way of working together.

And in the meantime the only thing to do is to accept this latest phase of anxiety regarding the assessment and to cope with it as best I can. I don’t know how many more phases there will be to go through before life achieves some sort of “new normal” and neither do I know when or what that will be. Maybe I will need to write more “head sorting” material in the future in order to make sense of it all and I’ll have a whole new analysis of the process in a few months’ time!

This blog is an interesting beast. No matter how much I want to write about some things and no matter how much I plan, sometimes my head just needs to write what it needs to write.

And letting it is part of the process of discovery!

Autistic or Broken?

58-2017-01-21-22-05-52Yesterday, 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.