The Preamble

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

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

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

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

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

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

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

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

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

What A Year!

It’s my birthday tomorrow!

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

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

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

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

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

Really really big!

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

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

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

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

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

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

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

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

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

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

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

But, on balance, in a good way!

Understands What?

“Until everyone understands” proclaimed the slogan on the front of the conference pack for the National Autistic Society’s one-day conference on Autism and Mental Health.

I sat, during the afternoon tea break of this conference, which I’ve already described in some detail in My Conference Day and Content Report, and pondered exactly who “everyone” was, and, perhaps more crucially, exactly WHAT everyone would, ideally, understand about autism and autistic people. My experience, at a conference supposedly designed specifically to promote understanding about autism and autistic people had indicated that understanding was still distinctly lacking!

First off, there were the practical arrangements at the conference itself as far as autistic people attending were concerned. The worries caused by the initial e-mail about the parking were just the start of a really stressful and difficult conference that seemed to have almost ignored the access needs of the very people it was supposedly advocating for. Being forced to sit in really close proximity to strangers who were wearing non sensory-friendly clothing was absolutely horrible for me, and my request for an end seat was given hardly a thought. Furthermore, no allowance was made for those of us who struggle to sit “normally” on chairs and cope by rocking or pressure stimming with our legs folded under us. There was also no area available for those of us who might happily have spent the day sitting on the floor. Another autistic blogger who was at the conference and blogged about it afterwards observed that some delegates were strongly perfumed – although my own sensory sensitivity to perfume is relatively low, some autistic people find strong scents absolutely unbearable.

I had already compensated for lighting and sound issues by wearing sunglasses and earplugs (the onus was entirely on me to take care of myself this way) and the impossibility of even knowing where the quiet room was without any sort of map or plan in the conference pack meant that I never even located it. Someone online said there was a sign in the foyer, but getting into the foyer any time after the start of the conference was, for me, impossible, owing to the sheer number of people crammed into such a small space. Similarly, the instructions for splitting into streams were only given in spoken instructions, which I struggle to keep in my head – I never did work out where Stream B took place, and had I been hoping to attend that stream would have been really grateful for a map showing where that session was located.

And, of course, it was the issue with the foyer that prevented me from accessing food, drink, or toilet for the whole day. In order to have accessed any of these I’d have needed a carer, but there was no provision for one to attend with me unless they also paid the conference fee. As an autistic adult (and, indeed as a person on low income) I was entitled to a “reduced” fee for the day (including, presumably, the cost of the food and drink I was unable to access), but it was still sufficiently high compared to my income that I thought long and hard before signing away what was, for me, a large amount of money (you can maybe gather by now that I really am keen to learn and to get information, as I spent a very large slice of my monthly income to spend a day in quite significant discomfort and you might well ask why I would do such a thing – I hope I’ll answer that question later). Furthermore, the displays of books that I would have liked to have browsed were also in the foyer and therefore inaccessible – it’s little wonder that I do most of my book shopping on Amazon these days!

I was, to an extent, prepared for many of the difficulties I encountered throughout the day. Although I have not been to large conferences for a long time (I believe I last wrote a conference report around 20 years ago), I know that the logistics of organizing a large conference are not straightforward (and even less so when the space booked for the conference was quite so tight as it turned out to be). I also knew that I was, to an extent, entering a world that would be alien for me. It was obvious that the registration form had not been designed with autistic people in mind – not only was the pricing structure unclear as far as autistic adults were concerned, but the drop-down box forced me to use “person first language” and describe myself as a “person with autism”. I have been part of the autistic community for considerably less than a year and in that time it has become abundantly clear that, like me, the majority of autistic people prefer to refer to themselves as “autistic” and not “with autism” (which somehow implies that autism is an add-on). I’ve heard “professionals” say that “person with autism” emphasizes that autistic people are people and is therefore, somehow “better”. To be brutally honest, if someone needs reminding that we autistics are people, then the problem lies with them!

However, there was a really bright moment in the day when Lorraine MacAlister was discussing the support programme Teen Life at the end of the lunch break. MacAlister explicitly stated that the language of the programme would refer to participants as autistic teens, having taken advice from autistic people themselves! That was the moment that made me say YES! to myself. Somebody in the NAS is listening. Somebody IS understanding and believing autistic people. This is progress! Yay!!!

It was also obvious from the list of delegates attached to the final conference instructions e-mail that as a mentally ill autistic adult I would be in the minority (at a conference about autism and mental health, yes, I know – the irony is not lost on me) and that most of the delegates had described themselves as teachers, carers, parents, and so on. I’d be interested to know how many autistic people attended (I knew there were several through my contacts on facebook, and I subsequently discovered on twitter that there others who’d been there), although I do absolutely recognize that educating those who are not autistic is a really important part of the NAS’s work – it’s just a shame this education cannot extend to showing non-autistic delegates how an autistic-friendly event could be run, and didn’t include education on, for example, not wearing strong perfumes!

And so we come to the speakers. Like with the logistics I was prepared to encounter tough material (if I’d been expecting fairy stories then I was in the wrong place), and I’d read and absorbed enough information about the keynote speaker to expect that there might be some challenging aspects to his presentation. However, I was here this time to see (and hear) for myself rather than to read the reports of others and I started out with as open a mind as I could.

From the outset it was obvious that Tony Attwood is supremely skilled in the art of rhetoric and is a slick and practised speaker. However, it also became obvious very early on that he was not addressing the entire audience. I very quickly realized that in this context I was a “they”, and there was no concession given to the fact that there were autistic delegates present. While the majority of the audience laughed at Attwood’s “jokes” (about robots, Oxford and Cambridge, the Antiques Roadshow, and whether or not autistic people were still virgins in their mid-20s), I started to become somewhat irritated by this “humour”, most of which seemed to be carefully calculated to get the non-autistic members of the audience on side. I also wondered, though, how funny the parents present would find the jokes about virginity when their own children reached their mid-20s and were struggling with relationships? The fact that autistic children grow up into autistic adults (rather quickly) seems to be perpetually forgotten or ignored by so many people who focus on children.

As someone who was a classroom teacher for 5 years, I’m absolutely aware that humour can be a great way to teach and to help an audience to remember points that are being made. BUT, and this is a really big BUT, when that humour is at the expense of a minority group, it crosses the line from being fun and educational to being downright offensive. Attwood’s references to having “learnt Aspergerese” as some sort of language came over as downright crass, and his pointing out of his own proof-reading mistake in one of his slides, followed up by the assertion that “some aspie would probably point it out to him” was horribly reinforcing of stereotypes that really should have been consigned to history by now. I wrote in my notes: “You do not need to be autistic to be able to proof-read a slide properly – I have loads of allistic friends who are superb proof readers!!!” Attwood also used the term “neurotypical” to refer to non-autistic people throughout, never explaining that he was doing so colloquially or addressing the fact that there exist non-autistic neurodivergent people, who he basically erased from the planet with his language. He is, sadly, not alone in this.

Throughout all of Attwood’s sessions I kept having to remind myself that the “they” and “them” he was talking about was actually me. It felt like, as far as he was concerned, I was not part of his audience but one of his “subjects”. The converse of the “humour” was the sad story – tales of family members and patients also elicited responses from the audience, although in this case, sympathetic muttering rather than polite laughter. Throughout the day I was determined to be my authentic autistic self and didn’t deliberately seek out other humans (I was overloaded by the sheer number of them in the room in any case), and nobody spoke to me or approached me. I wondered, when hearing these sympathetic mutterings what people were thinking about the obviously autistic person sitting in the corner gently rocking to myself and chewing on a necklace designed for the purpose (I’d already damaged my fingers by chewing the skin off – ironically during the session on self-harm)!!!

At the outset of the last plenary Attwood directly spoke to us (the audience) with the words “You, as the parent/carer…” which was an interesting experience for me since I am neither a parent nor a carer. Was I even supposed to be at this conference? Was this talk for me at all? I have heard the term “othering” used when describing Attwood’s style, and it seemed very much to apply in this case. He also used phrases such as “somebody must fall in love with an aspie or they’d have died out years ago”, implying that “falling in love with an aspie” was some sort of weird penance maybe? He also seemed to focus rather heavily on those autistic people who would, under the (now superseded) DSM-4 have received (and still do receive, in some places under the ICD-10) a diagnosis of Asperger’s Syndrome, and also used the terms “severe autism” and “classic autism”, neither of which is beloved of many autistic people. I didn’t get much of a sense that he respected the whole of the autistic community with all its richness and variety of experience.

There were other indicators that Attwood was not really up to date with current thinking in the neurodiverse community and had focused his work on the view from “outside” rather than listening to those of us who make up that community. I also believe I heard him misgender someone, though I’m not in a position to call him out on that without hearing from the person concerned and establishing what they are comfortable with. It was also an interesting conference to attend for me as my main experience at conferences thus far has been of academics presenting to academics and many of the questions are often challenges or additions to the work presented. The questions that were drawn from the floor in this case were predominantly of the “please can you tell me what to do about my child / children I teach” and so on. When asked about autistic children in school being bullied, Attwood suggested that some other kids could be “trained to speak Aspergerese” (that phrase again) and could then be issued with “jigsaw puzzle badges”. At the mention of puzzle pieces I nearly fell off my chair. Does Attwood really not know just how offensive the puzzle piece symbol is to many members of the autistic community? Should somebody tell him?

It was a really interesting experience actually hearing all this. And it was in contrast to Khalid Karim’s professionalism and Wenn Lawson’s inclusive friendliness. I’m not saying that Attwood’s work hasn’t been incredibly useful in many ways. His strategies for balancing energy and dealing with meltdowns and shutdowns are excellent, The Complete Guide to Asperger’s Syndrome is a mine of information, and I shall also willingly read the recent book on depression, and it was obvious from some of the questions that many of the people at the conference learnt a great deal from him – I totally appreciate that most of them probably don’t, as I do, have 45 years experience living as an autistic in a non-autistic world, many of them will not have self-harmed or attempted to take their own lives, nor will they have experienced meltdowns and shutdowns from the inside. Neither will most of them have spent the last 9 months intensively studying absolutely everything they possibly can about autism, as I have! In many ways that is my privilege. Although Attwood would probably just tell me I was being a “typical aspie” or some such!

I had read tales online of autistic people returning from Attwood’s talks upset and traumatized. Partly because I was prepared for it, and partly because I treated the whole experience as an academic exercise, that wasn’t the case for me (although my sensory system was so overloaded when I got home that I could barely run a bath because the noise of the water running was so painful to my ears). Half way down the penultimate page of my notes I wrote “I wonder whether I could organize a proper autistic friendly conference” and I remember thinking “Right, my goal is to be speaking at things like this in 5 years time and I’m going to remember this experience”. Going to the conference has, to an extent, started me thinking about what role I might have in the future – what place there might be for an autistic adult who has academic experience, teaching experience, a fierce desire to learn, and is happy to stand up and speak to an audience? Is there some small way in which I can improve the world for all autistic people? Can I facilitate understanding of all things autistic using both experience and knowledge? Only time will tell. I know that, for the time being I’m still learning and still recovering from a severe autistic burnout, but I am also starting to get ideas and little beginnings of things to think about for the future. I might have spent most of the day silent, stimming, unable to access food, and not putting on any sort “social mask” (simply not enough energy for such a course of action), but it didn’t mean my brain was switched off – in fact, allowing myself to stim and not to worry about pouring energy into trying to chat to people or behave “appropriately” was the exact strategy that allowed me to spend my energy absorbing the information and thinking about it in some depth!

The conference has also inspired me to return to serious study of autism. Since my diagnosis in February I’ve eased off a bit and lost the impetus slightly, but it’s now back and I have new things to think about. I sat at the end of the conference wondering how this phase of “understanding autism” will be viewed in the future. I pondered the connection between adult autistics and allistic autism researchers, and how the two might work together and respect each other. I thought about the organization of events, about what might be researched and written, about the lack of focus on adults, and about how the current “understanding” seems to be very much based on models created by non-autistic people.

I got the feeling that this whole area is still very new, and that genuine understanding of autism is still very much under construction. But I also wondered whether Attwood’s approach was beginning to become part of “the past” now and whether greater consultation with autistic adults might be the way of the future. I came away with a sense that if the National Autistic Society really are going to keep going “Until everyone understands” then they have a long job ahead of them, and even their conference organizers still have a lot of understanding to gain – I didn’t return the feedback form at the end of the day because I simply didn’t have the energy, but I shall tweet this blog post to the NAS, and maybe, just maybe, somebody there will read it.

And as for me, was it worth going? Absolutely it was. It took me two full days afterwards to stop feeling really quite ill (there’s a reason these blog posts are being published a week after the event), but the knowledge I gained (about many things) was huge. I’ve also made new contacts online, started generating ideas in my mind, added to my reading list, and gained insight about many things.

Perhaps even more than that though, I proved I could do it. It wasn’t easy, and it was the first time I’d been out of the flat all day, without a known ally to look after me, in over 9 months. It took an awful lot of energy. But I managed it, survived, didn’t fall to pieces, and even learnt quite a lot. It really did feel like something of an achievement!

Storm Clouds

It feels as though storm clouds are gathering in my head these last few days. I’m not sure why, and I can’t work out if there’s anything I can do about it, but I have that feeling that I’m building the sort of tension that will eventually lead to meltdown or shutdown. But not yet. Somehow the energy is yet to be released. Things are too controlled. Maybe, knowing I have a weekend of things to do out in the world means that I’m keeping control somehow. I have that feeling of wanting to cry, but not being able to.

It’s an unsettling feeling, though not totally bad. I don’t even think the overload in my head and the build up of emotions (many of which I’m struggling to identify for alexythmic reasons) is entirely negative. It’s just that I can feel a gradual build up. Of something. I’m trying to analyse what that something is. I’m trying to judge whether some sort of big stimming session would help. I don’t know. It’s a very edgy feeling.

This is the fifth attempt I’ve had at writing about it. What has emerged as a common theme in the first four attempts is that this state is a mixture of two lots of emotion. One lot could probably be called negative, and the other, positive. They are existing inside my head simultaneously, and both pouring these strong, but not totally identifiable, feelings into my system. I get emotions like this. I always have, except when too depressed, or taking large quantities of medication, which seems to blank many of my feelings out anyway. One reason I hesitate to take medication is that much of it takes away things that I value – my appreciation of music, my excitement in the world, and so on.

And so, these huge waves of emotion keep washing over me, and I’m trying to untangle them in order to deal with them. Maybe a therapist would help with this, but I don’t have one, so I’m trying to do it on my own. Although it’s becoming obvious from trying to write it down as best I can that the same things are recurring over and over and my mind is still trying to deal with them. I’ve almost certainly written about them here before, and I apologise for what is probably terrible repetition (my husband says that he is used to me saying everything 98 times) but it seems that this need for repetition, for reassurance, for rehearsing the same argument over and over is probably one of my autistic traits too – something I need to do to get things clear in my mind.

And so the negative thoughts:

The constant nagging knowledge that my life will be limited because I simply don’t have the productive energy that most people do because I’m using so much of my energy to cope with my environment and to process language. I don’t like being limited, but decades of experience have shown me that the consequences of not consciously limiting my life and of trying to “be like everybody else” are poor mental health and catastrophic burnout. I am furious about this. I do not want to have to limit my life, but I must, and I know I must. I have to learn to be gentler, and allow recovery time.

I’m still not fully able to explain to people what being autistic really means. I’m still encountering “yes, but we all get tired…” types of comments, and I’m not yet able to articulate in words that what I mean is something different and that I’m not on about it being the end of a long week and I just fancy a bit of a lie-in. I need to write a blog post about this, I know I do. It is nibbling at my insides (yes, it feels like that) and I need to deal with it. Ditto the current controversies about stim-toys and spinners. I have so many and various thoughts about the whole thing, but I can’t make them into words currently, and that is frustrating me.

And talk of schools and classrooms and so on keeps pulling me back to my own childhood, the door onto which I had closed, I thought for good, until last year, when it had to be forced open. And once it was open, it was really useful for getting my diagnosis, but it hasn’t brought back floods of joyful memories, but of a time when my main objectives were to stave off bullying, to learn to behave, and to achieve good results academically. I had no chew toys or spinners – so I chewed my tie and my jumper and I played with bits from my pencil case and got into trouble for doodling during lessons (among other things).

The late diagnosis thing still irks me. The fact that I had to get THIS broken before anybody noticed that I was autistic. The fact that I was born at a time in history when the world didn’t know about people like me. I’m still sad and angry and regretful at so much of the first 45 years of my life. I’m still furious with the mental health specialists who didn’t know. Today we talk about acceptance being preferable to awareness – even the most basic awareness 20 years ago of autism in those of us who were AFAB might have saved me so much heartbreak.

And here I am, a 45-year-old burnt out non-binary autistic, going through the menopause, learning who I am, trying to rebuild my life, and doing it, currently, without help from anyone except a husband and friends. And I often feel like I am breaking, like I just want to vanish off the face of the Earth, because my youth has gone, and I want to cry for all these things, because they’re still bothering me.

But the positive thoughts are also strong:

The relief at no longer feeling the pressure to be a high flyer. The knowledge that I have a disability (and yes, for me, it is disabling – there is much to be investigated regarding models of disability, but that is not for now) and therefore I can stop beating myself up when I don’t achieve what I thought I should be able to is reassuring. The knowledge that the levels of self-care that I need are now “permitted” is such a huge relief, so liberating, and even joyful. I don’t have to be some kind of superhero any more – I can built this new life and stop pretending to be someone I’m not.

Most people I know are being massively supportive. I’m hugely lucky to have most of them in my life. Far from being deserted by old friends, I’m still, even, making new ones, people who care enough to be interested, people who read this blog and who are helped, people who understand the difficulties, and some who do not but are investing their time and energy and are willing to learn and be caring and understanding. This makes what I could call “big feels” – I don’t have a better expression than that currently. Like so often these days, I just hope people know what I mean.

And though I cannot change the past or do anything about my childhood or its difficulties, I’m now massively enjoying allowing myself to explore the world that has now opened up of toys and things to fiddle with and things that I can buy for myself without anybody to tell me not to. I can sit and stare at my glow in the dark spinner until it runs out of glow, I can roll the ball around on my fidget cube for hours at a time, I can have all the toys now that I never had as a child, and because I am old and spend the majority of my time at home alone nobody will tell me off for doing these things. I am making up for lost time in a big way, finally releasing all the bits of me that have been hidden all these years.

And the fact that the diagnosis has come at all, even this late, is still enough on its own to make me cry with happiness. The relief, the liberation, the knowledge of who I am and why I am and how I am. The permission to be something other, the explanation of why I’ve felt as I have all my life, and the solving of hundreds and thousands of mysteries from the last 45 years. The letting go of the old expectations, the shift to a neurological identity and a gender identity that feels properly comfortable to me, rather than one I was taught was the case. The hope that I will eventually recover from this burnout and will eventually get through this phase and that life will be better than it ever has been, and that I’ll eventually build a life that will be right for me.

And part of what is causing these emotions feels like some sort of huge “sigh of relief” from my entire being. I read about labels and words and why do I need the descriptor “autistic” if I know who I am. For me, I needed that descriptor to SHOW me who I am. Learning about what it means to be autistic is teaching me how to be who I am – because after 4 decades of acting roles, my real self has become somewhat obscured and needs a little help to emerge. I’ve had a lot of training to be someone else. I have a lot to discover. The minute I knew, and I allowed myself, and I learnt for the first time in my life to follow my instincts, things felt very very different.

And each time I’ve tried to write about this, these simultaneous bunches of feelings keep emerging, over and over again. Not even oscillating, like the states described in my earlier post, but together. Sadness and anger and regret alongside relief and liberation and happiness.

And the word at the end of every piece is still “autistic”, as if I’m still trying to make my head accept it fully, embrace it fully, and be able to go out into the world and live it fully. I want to do that, so very much. I know that it will not always be easy – but I do not shy away from difficulty and I never have.

Even writing it all down like this has actually changed how I feel, released some of the energy that I had when I started typing around half an hour ago. I’m calmer. The storm clouds have rolled on past for now. They will be back. The next meltdown and next shutdown will happen at some point, but typing everything up like this has had a healing effect for now, sorted things out a little. If anyone’s still reading, then thank you for indulging me. It has helped.


I had the first of two follow up sessions with my autism assessor. It had been a tough week, one that had tested my resolve to stay alive somewhat significantly. So much doubt, so many thoughts planted in my mind about whether I really knew what I was on about. Was I as wrong about things, as I had been told? Confidence so very low.

I parked. My husband met me, with coffee, which we drank while sitting on a low wall in the sunshine. We walked the 15 minutes or so to the arranged venue (different from where I went for the assessment, closer to home).

And there she was, the assessor. Same dress as before. Familiar. Room set up so I could escape if needed. Lights off, just the sunlight from the window. She made me a cup of tea and fetched my husband a glass of water. I took off my boots and folded my legs under me on the chair, gently rocking back and forth, chewing my fingers a bit.

We discussed the report. We went through the list of questions I’d sent her, one of which was particularly important to me. We discussed what had happened in the weeks since my diagnosis. We discussed the reactions of various people I’d told about my diagnosis – both the positive and the more challenging.

This is not the post for coherent detail – it is written on the evening of the follow up. I am feeling, for the first time this week, that it is worth staying on the planet, and that there might actually be a point to all this. I am relaxed, positive, and maybe even happy. I am not writing an academic essay right now, with proper structure or detail, just a brief account. Nearly one of those “maybe poems”, but not quite.

And, with a professional in front of me, I asked the other questions. Not the ones on the paper, the answers to which were so important to me in any case and really clarified things in my mind. But the other ones, the ones that have been swirling round my mind all week.

Because I had been told that I was wrong. I was told that my analysis of the situation was incorrect, and the implication was that I should listen to someone else, who believed they knew better than me, who believed that I didn’t know what I was talking about.

So I asked the professional. The person who has massive experience, and knows what the answers are to the questions. And she said I was right. My analysis of the situation and my needs was correct. I was not going crazy, and if anyone told me that I was wrong about these things then I should ignore them, because I did know, and I was right.

The sense of validation was huge. Maybe even more so than the day of my diagnosis.

We emerged from the appointment after an hour or so, having arranged to be in e-mail contact. Back into the sunshine and what had just become a considerably more lovely day. My husband bought me some cheese. We chatted for a while, about the positive experience and maybe some hopes for the future.

And he stayed in town to work, the work he has to do to sustain us. I drove home.

And didn’t consciously have to stay alive.

Because I am right, and I am validated.

In many many ways.

One Day After…

72-2017-02-22-12-26-06Head closed
Like a shop

Body wants pressure
Tight, reassuring
And movement

It is like a dream
But real.

So much
Life finally
Makes sense.

Trying to work out
The feelings.

Many of them.


Lots of things
I can’t yet identify.

Still seems

But they examined
And tested
And said
It is true.

Very very grateful
For validation

None of this
Even heard of
A year ago.

But now
A new future