Busy and Hot

When I woke for the first time today, at around four in the morning, I asked myself what I was going to do with the day. I had all sorts of plans in my head for things I might do, places I might go, what I might write. As it is, I eventually fell asleep again, and have now only just surfaced. It is nearly midday and I know that the plans I made in my head at four this morning are, on the whole, not going to happen.

And after a brief moment of beating myself up about it, I suddenly realised why I was so exhausted and why I haven’t written a blog post since Sunday and why I didn’t write the one I wanted to on Tuesday or the others that I still want to write (one in response to something) and why my admin is behind and I owe people messages and e-mails and so on – I have been busy!

The last two weekends I’ve been playing music. It’s been amazing and enjoyable, and brilliant to meet up with friends (old and new) and to play under a conductor who’s an absolute pleasure to work with. The concert was on Saturday night, so I was pretty wiped out on Sunday, but felt moved to write the rather rambling blog post on pride anyway. Monday I went for a short run, which, given my recent running activity, was a big deal. Tuesday I went to visit my best friend. Wednesday I went for a coffee then went to buy a few groceries.

And all this at temperatures above 30 degrees, which we’re really not used to round here, and which drain my energy rapidly. Furthermore, there is no airflow through our flat, so the only way to stop the hot air stagnating and to get any sort of breeze is to use fans. The noise of the fans is really not good for me and overloads me pretty much to the point of meltdown within a fairly short space of time.

Maybe, to most people, that level of activity and a bit of hot weather really wouldn’t be a big deal. When I think back to the “me” of the past, before two huge burnouts, before mental illness was even identified, that “me” would have looked at the “me” of now and thought myself utterly pathetic. I’d have been unable to comprehend why I couldn’t just get my act together and, with enough willpower, just get on with it.

Of course, the “me” of the past being like that, forcing myself to live that “normal” life for so long, doing what was expected of me and using vast amounts of energy and willpower to do so (largely because I assumed everyone else was doing the same), is a large part of what has caused me to have two major burnouts and to have arrived where I am now, with rather depleted functionality and very low energy levels.

Fortunately the “me” of now is starting to learn. And, a few minutes before writing this post, I realised not how LITTLE I’ve done over the last few days, but how MUCH I’ve actually done. And, I had, once again, to remind myself that my mind works a bit differently from most people’s and that I need more downtime, more space, and that things that come fairly easily to many folk, are actually rather challenging and energy consuming for me.

So the plans that I made at four this morning are now dropped, forgotten. Today I need to focus on self-care. I need to stay at home, even though the temperature in the flat is still 28.5 degrees and the place smells stagnant and nasty because neither of us has had the energy to do any serious cleaning and there’s no airflow because it’s so still. It’s not ideal, but it’s not a choice, because I need the solitude. I need not to go through the anxiety cycle of going out and working what to say to people and so on.

If, and only if, I have enough energy beyond that required for basic self care, I shall try to sort out the jobs lists and my diary, and sort out what I need to do, even if I don’t actually do it, but I expect it won’t get much further than that. As I’ve increased my levels of activity, and as I start to gain a bit of functionality as I emerge from burnout and from the whole “discovering I was autistic and getting diagnosed” thing and all the shock and relief and complete re-evaluation of my life, it’s tempting to think that I can just “go back to normal” without any consequences. But, of course, that isn’t the case.

And, interestingly, the blog post I wanted to write on Tuesday was the one outlining how I now am, four months after my diagnosis (it was the four month anniversary on Tuesday). And I’ve sort of gone and written it anyway – at my second follow up appointment it was noted that the increase in activity and my “recovery” carries a price, and that I need to remember that. This week that price has been that my head has become more and more muddled, I’ve struggled to hold conversations and to form words, I’ve struggled more with basic stuff at home, I’ve retreated once again into eating the same thing every day, and my decision-making capabilities have plummeted.

My level of satisfaction with life has also dropped – despite what might be perceived by someone from the outside (I’ve been seen playing music, going for a run, visiting a friend, and having a coffee) possibly indicating that I am happier with life and doing more “enjoyable” things, I’ve actually felt less happy, more frustrated, and generally more anxious. Yes, I’m really pleased that I got out to play in a superb concert and that I went for a run etc. because these are things I love doing, but they still drain my batteries, and a combination of the heat and trying to fit in other stuff has meant I haven’t been able to recharge properly.

Ironically, a viewer from outside who observed how little I’ve stimmed over the last few days might decide that it’s some sort of “improvement” and some sort of “your autism’s getting better” thing. In fact, the reverse is true. I desperately want to rock hard on the sofa for a bit, to wrap myself in compression, and to hide under my fleece blanket – these are all good and lovely things and part of how I cope with having to deal with the outside world. But I can’t cope with doing them at the moment because it is TOO HOT. So not only am I dealing with bad sensory stuff (noise of fans, feeling sweaty and nasty, smells stronger) because of the heat, I can’t mitigate with the good stuff.

So, in an odd way, I’ve looked more “normal” over the last few days, but the effect from inside is that I’m feeling increasingly dysfunctional and anxious and edgy and irritable. This “how autistic people look vs how they feel” thing is something I’m increasingly thinking about and want to write about some day, because I’m beginning to get the impression that the two are much more likely to be inversely than directly correlated.

In the meantime, I do observe that four months have passed since diagnosis, and that life is continuing to change. The people who wrote Tiny Glimmers back in January and Eight Weeks On back in April would have been amazed by what I have just written above and by what I’ve done in the last few weeks, so even where I’m still failing and still not achieving what I want to achieve (that will probably always be the case for me as my natural inclination is to constantly aim for more and to push to achieve goals and so on), I’m actually achieving much more than I was, which is, of course, progress.

But today “progress” will be achieved by resting and gentle tasks and self care, not by pushing on through. That way, I hope that I’ll be able to start to recharge my batteries enough to be able to do more running and music and socialising and to be able to think clearly enough to deal with admin and communication and to write more of the blog posts that I’d like to write!

Still Very New

A year ago
Things had started
To go wrong.
Depression maybe?
Anxiety
Growing fast.
Things had not been right
For several months.
I didn’t know why.
Autism was not
Even considered.
I was just
An anxious eccentric.

Ten months ago
People started
To suggest that I might
Be autistic.
Which, I have to admit,
Was a bit on the weird side
Because as far as I knew
I was just me.

Nine months ago
After a bit of research
And discovery
And, well, if I’m honest,
Having my mind blown somewhat
By the whole concept
And
In the face of so much evidence
That to deny it
Would be a supreme act
Of illogicality
I accepted
And I wrote
“I am autistic”
For the first time.
And started to believe
That maybe
All my failures
Were not my fault
And I wasn’t lazy
After all.

Seven months ago
The first assessment.
Disaster, meltdown, damage.
Invalidation.
Despair
And serious thoughts
About whether I could even
Go on living.
My whole identity
Fallen to pieces
My whole life
A pointless waste.
Feeling guilty
Simply for
Breathing the air.

Six months ago
I had started to blog
And to engage
With other people.
Figuring that even
If everyone thought
I was a total idiot
Then maybe, just maybe,
That was better
Than being dead.
My logic being
That being a friendless idiot
Has potential for reversal
Whereas being dead
Does not.

Five months ago
A second referral,
Elsewhere.
We had to work for it
Quite hard,
Never giving up.

Four months ago
DIAGNOSIS!
Officially autistic.
Life changed
For ever.
Even though
It was already known.
I needed
Confirmation
Validation.
Big relief.
Mysteries solved.
A new confidence.
New hope.

Two months ago
Life gradually improving.
Slowly.
The first signs
That maybe
Burnout
Wouldn’t be for ever.
Acceptance
Learning
Gently starting
To rebuild
My shattered life.

And now
I continue to oscillate.
Part of me wants
To be an expert
An advocate,
And to learn
And educate
And debate the issues
And to be a confident
Articulate
(Most of the time)
Authentic
Autistic.
It’s not very difficult for me
To behave in ways
That are obviously autistic
All I have to do
Is stop trying not to!
But
Part of me still believes
That I don’t have the knowledge
Or abilities
For all of this
And that I’m out of my depth.
Because
I’m just a small person
Trying to figure all this out
And sometimes
I wish life
Would just
Get back to normal.
Though, to be honest,
I’m really not sure what “normal”
Even means any more.
Why is this all happening
To me?
I do not have
All the answers.
I just want to hide.
It all feels so uncertain.
I feel insecure.
Not confident.
Is the confident autistic
Yet another act?
My identity continues
To wobble
On its axis.
Trying to sort what is
Genuinely me
While maintaining
A person
Who can survive
In society.

Balance.

Difficult.

So I look back.
Two months
Four months
Five months
Six months
Seven months
Nine months
Ten months
A year

And I remind myself
That autistic brains like mine
Need time to cope
With change.

I have years of lived experience
I learn fast.
Yes.
But I also struggle.
And I need time
And space.

Looking back
At just how much has happened
In less than a year
Is a good reminder.
That I don’t have to have
All the answers
Yet
Because, for me,
All this
Is
Still
Very
New.

Six Months Public

I don’t have time to write a long blog post right now as today I’m going out into the world to play music, to continue the process of discovering just how much I can push myself to do things and what adaptions I might need in order to be able to live the best life I can, and to keep rebuilding my life, which fell apart so spectacularly in the latter part of 2016.

However, I wanted to post something, to mark the six month anniversary of publishing The Discovery, which was the post in which I disclosed my autistic identity to anyone who cared to read the post. Only two posts preceded it, an introduction, and a bit of background, and I could never have imagined, six months later, just how much I would have learnt and written and connected with other bloggers and people in the autistic community. On that day, back in December, I was, to put it mildly, extremely nervous about what might ensue, and I still, at that stage, had no idea that the responses from most people I know would mainly be of the form “Well, of course you’re autistic, you mean you didn’t know” or “Well that makes total sense”!!!

I wrote about Disclosing Identities back in January, and I stand by what I wrote then. For me, full disclosure has been relatively smooth, although I am still getting back out into the world (like today) and I am still working on getting a smooth and brief script together to talk about being autistic in ways that are most likely to be understood and appropriate when discussing with people out in the world. I’m also still very much at the start of the process of working out what adaptions I might need in order to successfully participate in various activities and not end up having a meltdown or ending up too ill to function.

But, six months on from what was the real start of this blog (and might, at the time, also have been the end of it), things are OK. I am yet to be told that I “can’t be autistic” (or any similar phrase) and I’m still wondering whether that’s because I do, in some ways, fulfil autistic stereotypes (I do rock back and forth quite a lot, I am fairly random with eye contact, I do sometimes have full-blown meltdowns in supermarkets, and, yes, I do like mathematics and find it calming), or whether I’ve just been monstrously lucky to be surrounded by such supportive people!

Whichever way, six months from the nervous day on which I posted that first post, life now feels very very different. Still very much a work in progress, but a long way from how it was back in December.

Energy Budgeting

I have a fairly busy week coming up. There are things in my diary that I’ve agreed to do that involve other people and are therefore “fixed” and would cause stress to me and others to cancel or change. There are also jobs that I really do need to do this week because not doing them would cause consequences (paying bills, dealing with various messages, making decisions about what to commit to over the next few months so other folk can plan, and that sort of thing). So I’m a bit stressed, and a bit anxious about how I’m going to cope with it all.

Part of what has happened over the last few weeks is that my state of “wellness” has shifted slightly. I’m far from “well” or able to live anything approaching what might be thought of as a “normal” life, but I’m no longer so ill that it’s obvious my life can only consist of getting out of bed, staring at the telly for a few hours, and then going back to bed again, which was how it was a few months ago. I can now manage to leave the flat on my own from time to time, even though it exhausts me, and, consequently, I’m doing rather more than I have been for many months.

But this increase in activity comes at a price. Each time I increase what I’m doing, a bit of functionality drops off somewhere else or I end up, on the days I’m not out in the world, back to being so ill that I can barely get out of bed. I managed to get to the conference the other week, and then to write it up as fully as I could, but the result was that I then spent two full days barely able to do anything and retreated back under my blanket on the sofa, stimming almost constantly, and not really managing to eat properly. You might have noticed that, as I’ve been doing more I’ve been blogging less. I only have so much energy and cannot use it everywhere at once.

And so I need to budget my energy. If I’m going to have enough energy to do the things I want to do in life (or, at least, as many of them as possible – I’d really have liked a full-time job and a family and to have been able to have a hobby or so on top of that, but I’m realistic to know that, for me, those things simply aren’t possible), then I’m going to have to save my energy rather carefully and work out what things drain my energy and what things give me energy, and how I can balance the two.

Which is, of course, why, stupidly, I’m up and out of bed before 10 in the morning this morning, too much in my head to go back to sleep, and now sitting at the computer writing a blog post about it!!!

The irony is not lost on me that I’ve woken up this morning feeling not too bad and am struggling to rest in the way that I know I should be doing if I’m to get through the rest of the week without falling apart. I’m just hoping that I can get the important jobs like bill paying done today so that at least I can allow myself to crash out later in the week if I need to, and I can spend all available energy dealing with the inevitable anxiety that seeing people (some of them new) and going to places (at least one of them unfamiliar) later in the week will inevitably cause.

It’s also particularly difficult to budget my energy at the moment because I don’t actually know how much energy I have to start with. In terms of spoon theory, I’m currently being given a number of spoons at the start of each day but I don’t know how many there are (I’m sure others with variable conditions will relate strongly to this feeling). In terms of monetary budgeting, it’s like working with a bank account without a balance available – I might have enough in there to go on a spending spree and buy whatever I like today, or I might go out and try to buy essential food and not have enough to pay for it. I simply don’t know, so it all feels like a bit of a guessing game right now and all I can do is keep trying to find out where my limits are.

What I do now know is that the only way to manage these energy levels is to let them settle as I stabilise after burnout, to work out just how much functionality I have in what areas, and then to start to look at how I can optimise life in general to be as good as it can be. I’m still accepting that it’s never going to be the sort of life I anticipated it would be when I was in my late teens and early twenties, nor the life that many other people expected me to have at that time. I’m still trying to figure out what I can do and get to a point where there is some sort of stability in my life. Currently, it all feels rather unknown and rather challenging and rather uncertain.

I could, of course, decline the offers to meet people, to play music, and to go out to dinner. I could give up the idea of ever running in big races. I could abandon plans to continue studying and learning. And I could decide to spend the rest of my life watching daytime TV, scrolling through social media, and playing with the animals. It became evident years ago that I can’t hold down a life-sustaining job for any length of time and I am not able to live independently. It also became apparent some years ago that having a family wasn’t going to be in my list of options either.

However, I’m interested enough in things that I don’t want to abandon all my goals and I do want to get back out into the world as much as I can. But, unlike in the past, I now have knowledge that makes me experience almost everything in life very very differently. I feel like I almost went into hibernation back in September 2016, and I’ve spent months, mainly hidden away in the flat, exploring my real identity, finding autistic communities online, learning the language of the autistic world, discovering things about my past, learning to listen to my body, having hundreds of “lightbulb moments” where I suddenly realise that there’s something ELSE I have always done because I’m autistic, and also allowing myself time and space to come to terms with what has happened and to recover from the huge burnout that had been building for some time.

But getting back out into the world uses energy. It uses energy in unexpected ways. Every time somebody asks me the question “What do you do?” it saps my energy levels massively because I have no simple answer and have not yet developed a reliable script. Every time people expect me to have “normal” social skills, or to chat in a group, or to be able to process the sheer amount of speech in the world, I get exhausted. Every time I have to explain because I’m meeting people who don’t know me online and don’t read my blog, it’s knackering. Every time I hear someone using person first language or functioning labels and so on I want to scream at them, I want to make them understand, but that all uses energy – things that are taken for granted in autistic communities online are totally foreign to most people in the outside world and, as is so often the case, the only way to deal with it is self-advocacy (ironically, I have a communication disability but in order to get my needs met in the outside world I have to be able to communicate effectively in a way that is exhausting and difficult to me)!!!

None of this surprises me, of course. Some of it I’ve known for years, and some of it is very easy to deduce when I think back to a year ago when I’d never heard of “burnout”, “stimming”, “inertia” and so on (I promise I’ll write proper blog posts explaining terminology at some point – it’s something I really want to do, but I can only process all these things at a certain pace and I can’t do everything at once). I know that there’s no reason why most people would have the faintest clue of what it’s like to experience the world as I do (and, of course, it turns out that I don’t know what it’s like to experience the world as they do either) and I’m now having to work out the interface between me, now unmasked, totally public and “out” and determined to be as authentically autistic as possible, and the world outside that won’t always totally understand me.

And it all uses energy. Lots of energy. And I don’t know whether I even have that much energy much of the time. But, ten months after discovering it was very likely I was autistic, six months after the low point of the aftermath of the first assessment going so badly wrong, and nearly four months after diagnosis, I’m starting to gather just enough energy together to do a few “normal” things out in the world. And since I’m no longer masking, or pretending, I’m hoping that I’ll gain quite a lot of energy from that – enough to compensate for the energy I’ll use doing all the necessary explaining.

So energy budgeting is very much something I’m thinking about at the moment. I’m starting to gather resources, starting to think about how I could make a system that will work for me (much like my old “mood diary” did so effectively in managing my bipolar disorder) in monitoring things, and what some of my goals for the future are going to be. Since I now know I have quite substantial limitations on what I can do because my neurodivergent brain needs so much energy to process “ordinary” things, I’m going to have to choose my goals and activities quite carefully!

This still feels like very very early days. There is still a long way to go. But it’s a start!

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!

Works In Progress

I’m aware that blog posts have been a little erratic of late, and it might seem that I’m doing less writing or losing interest. In fact, that’s not the case at all, and what’s actually happening at the moment is that I’m trying to work on a couple of projects, both of which will probably extend to multiple blog posts, and both of which I really want to get right and be as accurate and clear as possible, since both are important for different reasons.

One is the story of my final autism assessment, the one where I received my diagnosis. I’ve started work on this, but remembering back and trying to write exactly what I want about it is taking quite a lot of energy and is quite hard work, so it’s not happening overnight. It’s more of an “end of term assignment” than “this week’s homework”. It might take another week or so for me to complete this project.

The other is a write up of what happened on Tuesday of this week when I attended the National Autistic Society’s conference on Autism and Mental Health. I’m trying to write up the experience and what I learnt (I took 11 pages of notes), and my thoughts on the day as a whole. There are many of these thoughts and sorting them all out into presentable form will take a while. I’m currently working on them as fast as I can.

Furthermore, as is obvious from the preceding paragraph, I’ve actually been out in the world again doing things quite a lot recently. I’ve been to the conference, met up with a new friend, played quite a lot of music, and am also meeting up with old friends over the coming weekend. Furthermore, I’m starting to organize my life and plan for the future a bit too and have started thinking about goals and plans for the next few years in a way that I haven’t done for a very long time. Most of these things are taking a massive amount of social, sensory, and executive functioning energy and I’m needing to undertake a certain amount of self care (downtime in between, remembering to eat, etc) in order to cope with my increased activity levels while still continuing to recover from burnout. It’s a tricky balance to achieve.

So I’m still here, still working on these things, and still trying to do a good job of giving information and my viewpoint and doing so as clearly as possible. I’m still also working on tidying up this blog and making a complete list of posts and so on, but all this will take a little time, even though I’m very very determined. I’m doing, as I always do, my absolute best with it all.

But I’m only one human with a rather erratic mind, and I’m acutely aware that I need to protect my mental health so I don’t relapse, so it might take a few days for me to catch up on everything I’d like to say.

I’ll get there!

Low Confidence

Today is one of those low confidence days.

One of the days where I’m not sure if I’m getting it right, or wrong.

When I keep opening blank boxes on Facebook and Twitter and closing them again.

Where I can’t quite make my thoughts into words properly.

And I’m really uncertain that people will understand what I mean.

Because I am full of big feelings that I can’t translate.

When I look at the jobs list it seems long and complex and insurmountable.

I’m still trying to work out this new identity. Still trying to explain.

Still trying to write the posts I really want to for this blog.

My head is screaming at me that I need to do EVERYTHING. NOW!

Surely with enough willpower all is possible?

Wanting to be strong. Wanting to be efficient.

Wanting to sort my life out and achieve and succeed.

But the inertia is high and the functioning is low today.

I am still recovering after a busy time and a shutdown.

I am still having to remind myself that I am autistic and my mind needs a more forgiving approach than I have previously given it.

Now that my act is gone. Now that I’m working out who I really am.

These days I do not have the protection of a mask, nor the ability to recreate one.

Remembering what I have been through these past few months.

It’s perhaps inevitable that I struggle a bit.

I need to take things gently.