A While, Maybe?

I’m still a bit behind with quite a lot of things, including stuff that I’d like to write here. Technically, today should be another rest day after the busy two-day weekend I’ve just had, especially as it’s the first time I’ve been out of the house for most of the day for two consecutive days in a very very long time. I’m also conscious that the weekend was preceded by a busy week and that my head isn’t working quite well enough to say what I want to say yet. The thought to word translation mechanism isn’t running smoothly – it feels as though it needs a drop of oil on the machinery or something.

It was an interesting weekend. Saturday I managed fairly well, although forming words became more and more difficult as the day went on, and by the end of the evening I was finding trying to translate my thoughts really laborious and hard work. Sunday morning was difficult – even my comfiest and loosest clothes felt scratchy and constraining, and I spent most of the day feeling gently nauseous. I never even attempted to remove my darkest sunglasses – even through them it was as though the brightness had been turned up to somewhere beyond maximum, and when I got home it felt as though my entire system was in overdrive. I rocked hard and bashed myself on the back of the sofa for a bit then fell asleep under my weighted blanket, which helped.

But it was a successful weekend. I managed to do approximately fourteen hours of orchestral rehearsal and concert, and both my playing and physical robustness were pretty reasonable. Not as good as they were in the past, but better than I expected in the current circumstances.

There were friends and allies there, including an old friend I hadn’t seen for years, and with whom it was good to re-establish contact. I wasn’t as social as I’d have been in the past, and not as much as I’d really like to be able to be for both networking and just getting to know folks purposes, but since I’m now officially socially inept rather than merely empirically so, I feel rather less guilty about going off on my own to eat lunch, taking a proper break from people now and again, and sitting in a corridor wearing ear defenders, rocking back and forth on my own. This is all OK now, and a great relief too.

I could easily have sat and sobbed about half way through Sunday afternoon, but didn’t. Having an explanation for why I feel so suddenly emotional about apparently nothing some of the time really does make it easier to deal with. Makes it easier to rationalise in my brain. It’s actually OK just to feel wrong sometimes, especially when I’ve been out in the world surrounded by people and noise and lights for hours on end. There’s a reason for it.

And years of musical training help – focus in on the playing, which is what I do, which is why I was there in the first place. In the same way as I went to the autism conference because of the intense interest and need to learn and pursue that interest, I keep returning to the world of orchestral and chamber music playing because I am driven there by that interest and the need to keep doing it and keep learning. Music is probably the longest lived “interest” I have and has persisted throughout my life, only vanishing when I’ve been severely depressed or deep in burnout. Trouble is, orchestras inevitably involve people – so I have to do quite a lot of work (being with people) in order to get access to the playing!!!

The aftermath of the weekend is interesting. I’m very tired. My word translation is off. I can feel myself struggling to say what I want even interacting online. I’m more triggered than usual by things – someone on facebook extolling the virtues of “cooking from scratch” made me really angry (I didn’t comment, just ranted at my husband a bit – he’s used to it). I drank rather more than I should have done last night. I’m still finding sounds too loud and lights too bright. And my executive functioning (ability to get my act together and do stuff) has taken something of a battering, as has my task initiating and switching ability.

None of this is surprising, given that I’d had an evening rehearsal the week before, then the final meeting with the autism assessment service, then stayed up all night watching the results of the General Election as they were announced, and then spent a weekend out in the world. Those things between them have used up nearly all my energy in the past week.

However, what’s different from how things have been for a long long time is that allowing the language system and functioning system and sensory system to decline, and just going with it now I know what’s happening, means that I am not ill after such activity as I would have been in the past. Not making myself chat to people at lunch breaks, spending time stimming quietly on my own, only making eye contact when absolutely necessary, not forcing words in order to “be polite”, and so on, all mean that I’m not feeling that awful “sick” feeling that I’m so familiar with to anything like the extent I would have done in the past. I probably appear slightly “odder” from the outside, but on the inside I’m actually calmer, and also, currently, considerably less depressed.

And I’m tired yes, but not quite so bone-numbingly exhausted as I might have been. Partly, I suspect this is because I’m continuing to recover from burnout, but even though I’m going out into a world that won’t always understand me or the way I work, the fact that I understand myself already removes a whole load of pressure, so this huge internal pressure I’ve always felt to “succeed” is now off.

I realise this is another rather erratic rambling blog post. And I’m still conscious that there are things that need sorting here. I’ve also been sporadic on the facebook page and not had much energy for twitter. I did manage to write one of the “poem things” after the first evening rehearsal though. At the time I didn’t manage to post it, so I’ll include it here.

The outside world,
Even when friendly
And something
I want to do,
Is sometimes
Utterly
Utterly
Exhausting.

Last night
I returned
To an evening rehearsal.
People
Noise
Lights
So. Much. Input.

This morning was spent
In bed.
Mostly asleep.

When I got up
And dressed
My clothes felt like
They were trying
To suffocate me.

It took many attempts
To write a Facebook status.
I have still failed to make
A cup of tea.
Even filling the kettle
Beyond me.

I don’t know how long
It will be before
I have enough energy
To post this
On the blog.

A while, maybe?

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!

My Conference Day

As usual, my curiosity got the better of me. I wanted to know, to find out more, to increase my knowledge of what was going on with autism research, and to see some of the people who had thus far been just names on book spines or people I’d encountered in internet discussions. And so, when I came across a link on facebook to a one-day conference, organized by the National Autistic Society, on Autism and Mental Health, I initially saved the link, then, in a moment of confident madness, signed up to attend.

It turned out to be a really really interesting day. For very many reasons. I learnt a lot!

I was expecting it to be supremely challenging and had already baulked slightly at the confirmation e-mail, which had stated that parking was limited and that those who couldn’t park would have to use a park and ride service (there seemed to be no thought for those of us who often find public transport almost impossible), and, despite my best attempts to be early, heavy traffic meant I arrived rather later than I wanted to. Fortunately the hotel staff directed us to a nearby place to park – which was great in that I didn’t need to walk a long way in lieu of taking a bus, but made me edgy because it didn’t tally with the instructions in the e-mail.

However, I wasn’t actually late, which was a huge relief, and I went in to register in a very busy foyer area – I found my own name badge and was then handed a scratchy lanyard and a spiral bound conference “pack” (more of a “book” than a “pack” really). I noticed many displays of books and so on, which I hoped to look at later, and managed, with considerable effort, to collect a drink and a pastry on my way in – I hadn’t been able to eat before leaving so figured some nourishment would be a good idea. I then headed into the hall, where around 400 people had gathered.

A woman in an NAS t-shirt was close by the entrance. I asked if it was possible to have a seat on the end of a row. She told me that “there might be some over there”. There weren’t, so I sat on the penultimate seat on the front – at least there was space in front of me that way. Someone else came and sat on my other side, making me feel crushed into the small chair which was crammed right up to the chairs next to it. This was going to be really hard work. Exhausting and difficult. The stress levels started to rise.

A voice came over a loudspeaker asking people to fill up rows from the middle. More squeezing in, more crushing up. This was in stark contrast to the poetry event I’d attended a couple of weeks earlier where it had been announced that people should feel free to move chairs off to the side, to sit on the floor, and to be comfortable. Today was not going to be comfortable at all, rather the reverse. I took my fleece off and the person next to me invaded my space with their prickly jumper and even more prickly hair, making my arm flinch – it was like being prickled by a cactus the whole way through. I wedged my fleece between us in an attempt to avoid further prickling. The person on my other side (evidently also autistic) tried to move as far away as possible but was not confident enough to move their chair at that stage.

There was a short introduction by two people: Lorraine MacAlister, who was wearing a fascinating blue top with sort of “open-plan” arms, and Rachel Townson, and then the first of the day’s plenary sessions, from Tony Attwood, began. I’ll discuss the content of all the conference sessions I attended in a separate post because I took 11 pages of notes in addition to the mini reproductions of the slides that were part of my conference pack, and even I know that there might be a sensible limit to the length of blog posts sometimes!

About half an hour into the first plenary I knew I wouldn’t be able to get through the whole thing sitting “properly” on my chair. I could feel the sweat starting to trickle down my back and knew that the nauseous feelings I get in such situations wouldn’t be far behind. I moved my chair forward ever so slightly in the desperate hope of getting some space, and eventually took one of my shoes off and folded my foot underneath me, which really helped. I also put my attenuating ear plugs in, because I was becoming aware that the amplified speech was already overloading me, and this was going to be a long day – if I didn’t want to become a practical demonstration of an autistic meltdown for the assembled company I was going to have to take some action to avoid it.

I focused on taking notes, something I’ve learnt over years of being a student and taking minutes in office meetings. The material was not unfamiliar to me, both from reading and, sometimes, from personal experience, and I was on a mission to learn, so taking notes and following the slides seemed like a good strategy in any case. While there is much about Attwood that is controversial (I’ll be writing about that later), I was still, at that stage of the day, observing and taking in information, and hadn’t reached the “analysis” stage.

The second speaker, Wenn Lawson, was instantly relatable in a way that Attwood hadn’t been. I was still desperately uncomfortable, squeezed into the tiny chair, without sufficient space to stim as I felt I needed to (a discreet fidget cube will only get me so far if my body is predominantly contorted into a “normal” sitting position), but the calmness of Lawson’s delivery helped to bring the anxiety down somewhat. I was still much disturbed by the noise of pages turning, and even more so by the feeling of the air on my arms from those close to me turning their pages, but I knew I’d manage to get through to the break time by this stage.

Break time meant relief from the chair. I knew everybody would be moving anyway after the break, because the conference was splitting into three “streams”, each focusing on different areas. I got up and went to the back of the hall and out to the foyer where refreshments were available. And that was as far as I got. I knew, from the way in that tea was going to be problematic for me – hot water, tea bags in wrappers, milk goodness knows where, complication complication complication. I’d just about managed it once, at the start, when the foyer was rapidly emptying. This time there was no chance. I even struggle to make a cup of tea in my own kitchen much of the time, and I knew that in these circumstances it was beyond me. I stood and looked at this sea of people and thought “Bollocks! This is the bit where I need a carer and I haven’t got one” and for a brief moment thought that attending at all might have been a mistake. I might even have gone home at this point if I’d been able to get to the exit, or if I hadn’t been determined to “complete”, in the way that I so often am!

So I went back into the hall, unrefreshed, and resigned myself to the fact that I probably wouldn’t be able to eat or drink or use the toilet all day (the toilets were also in the foyer place). They’d said there was a quiet room of some sort, but I had no idea where it was. They’d said to ask. I’m not sure I could have found words to ask anyone, even if I could have worked out WHO to ask from within the giant sea of humanity threatening to wash me away in a tidal wave.

But I have one or two strengths that meant I survived. First, I had, sensibly as it turned out, taken a couple of snacks and a bottle of water with me in my bag. Secondly, I might be very low on executive functioning skills and I might also be very mentally ill a lot of the time, but physically I’m pretty robust. My system can survive on snacks. I can go all day without a wee if needs be and if I budget fluid intake carefully. So I headed for the safest place I could find, which was the corner of the room where the next session was to take place. I moved a chair off the end of a row and put it next to the wall so I’d be able to rock without bashing into anyone else and pressure stim against the wall, and I got out my phone and retreated into my world, with my friends, where I knew I’d have loads of support.

I discovered online that there were other autistic people there having exactly the same problems that I was. The phrase “not autistic friendly” popped up, and I knew, at least, that I wasn’t the only one who was having difficulties. On my own facebook wall I updated my friends, and had a brief chat on messenger with one of them. Tension released somewhat. There were people there who could rescue me by talking me through it online if necessary.

My improved seating arrangements, with both shoes off now, sitting comfortably with my legs crossed up on the chair, back against the wall, made the next session much easier. The autistic person who’d been sitting next to me in the first session was nearby and had clearly had enough of chair sitting too and moved, sensibly, to the floor, which was quite a nice red stripy carpet that I’d be happy to have in my sitting room given the choice. Khalid Karim turned out to be an engaging speaker and the subject matter was actually more interesting than I’d anticipated.

Then was lunchtime. I stood up and wandered, again, to the back of the hall to see whether there was any possibility at all that I’d be able to access lunch. There wasn’t. Not a hope. I stood for a few minutes and assessed the situation then returned to my seat and to the internet on my phone. Some of the other autistic people online had managed to find the quiet room and said it was lovely. I looked in my conference pack to see if there was any information as to where it was, but there wasn’t, so I abandoned that idea. I ate the snacks I’d brought with me and sipped my water, just enough to prevent total dehydration, but not enough to need to access a toilet.

I chatted to my friends on facebook again – one of them even offered to ring the hotel and try to get some food sent to me (I have some superb friends), and found myself accidentally listening to something about autistic teenagers, presented by Lorraine MacAlister, which had a moment that made me say “YES!” to myself, and gave me hope that somebody somewhere is actually listening to autistic people.

And then it was back to Tony Attwood for the rest of the afternoon. It was rather an Attwood-heavy day all in all! I was, however, reasonably comfortable in what I now regarded as MY seat (by that point I’d have happily wrestled anyone who tried to move me). Even though people were still eating and still trying to access lunch, Attwood refused to delay the session, basically saying that people “should have been faster”. I’d be interested to know HOW they could have been faster, since 400 people trying to eat from a buffet in a crowded foyer in 50 minutes is such a tall order!

It was somewhere during this session that Attwood’s “humour” really started to grate on me. I wrote something in my notes about the quantity of wine I would need this evening in order to recover from some of what I was hearing, then, having vented slightly in ink, returned calmly to taking notes about schizophrenia. I have an academic training. I use it when I need to. I had got to the point where I was starting to critique this man. And I was still gathering information. Information is my currency.

After a final tea break (during which I didn’t even attempt to leave my seat) there was a final plenary. I watched them undivide the room back into its full format and those who were still there (which, creditably, was most people – though not so many as earlier) returned to the room. I was pretty tired by this stage, but continued to listen, while starting to reflect on the day. I was also getting desperate for some solitude and some respite from the loudness of the amplification and the constantness of so many people, but I stayed until the end.

I’d vaguely hoped to see the book displays on the way out when it was quieter, but all was packed away when I returned to the foyer, so I was never able to access them, so I just left. Fortunately the car was close by, and as I got in and locked the doors behind me I felt a certain sense of achievement that I’d done it. I’d just sat and listened to a session about how kids store up all their tension throughout the school day then go home and could release in by smashing up the recycling (a strategy of sorts I suppose), I felt like this was the end of my school day, but instead of smashing up the recycling I contented myself with the calming effect of beautiful gear changes, slotting into gaps in the traffic when changing lanes, getting out of town from memory, going back via the motorway, and feeling the freedom of being back in my own space.

I finally got to eat that day when my husband returned home from work via the chip shop! And I did have several glasses of what might be termed “maladaptive strategy” to go with my chips!

Out Walking

It is bright
Even through my darkest sunglasses.
Blossom scattered on the ground.
Curtains in windows uneven.
The chipped edges of the paving.
And leaves, each one defined.

It is loud
Even in the quiet part of the day.
Birds screaming a constant barrage of noise.
My handbag strap squeaking.
Construction site out of view but loud.
Car engines approach from either side.

It is strong
Even though I’m used to smells and feels.
Something flowering, overpowering scent.
Tobacco smoke from someone unseen.
Trouser seams rubbing on my legs.
The wind, assaulting my skin all over.

It is scary
Even though I am not in danger.
My heart pounds, but not from exercise.
A man with a dog, I’m instantly nervous.
I focus on walking, moving forward.
Until I reach the safety of home again.

A Short One

I have just been out for a walk.

This might not seem like particularly startling news. Especially when I tell you that my walk was just 2 kilometres long and I was out for under 20 minutes (the 2km actually took 18 minutes, 24.7 seconds).

The fact that I know that much detail about my walk (at an average pace of 9:12 per kilometre) will tell those in the know that I didn’t just amble round the block randomly, but I took my Garmin (running watch) and measured time and pace and so on.

I also wore my running shoes. A pair that have done a couple of marathons with me.

All this might seem rather irrelevant, and a slightly strange blog post. Maybe so.

But it is important.

Because it is the start of returning, properly, to life. It is a tiny bit of something approaching “normal” in this huge sea of autism and mental health and newness and unfamiliarity.

Aside from one short run in January, I have not run since November. Granted, I didn’t run today, but I took the first few steps (2043, according to my Garmin) towards it. Back in January I was making a desperate last-ditch attempt to be well enough for my spring marathon (and ultra) season, but I really wasn’t well enough, and quickly gave up.

So now I have abandoned all races until at least the autumn. And I am starting over. And I am making it as easy as possible to start over.

Because at the moment I am still struggling with inertia, massively. I’ll write properly about autistic inertia sometime – it’s the feature that means our brains are very good at persisting with things, often for hours on end, but are terrible at starting and stopping or switching tasks. The effort needed to start something is huge, and takes a lot of energy.

Furthermore, I still have huge anxiety when leaving the flat. My senses are still in overdrive from the burnout. The world is still loud and bright and full of so much information that I feel like my head might explode. Previously I would have used energy to mask these feelings, consciously blocking out the input to my senses – doing so for years has both left me too exhausted to function and has been seriously detrimental to my mental health.

So, in as far as I have any control over things, I am determined now, to be me, and not to use that energy unless I absolutely have to for survival. Furthermore, since the energy to mask ran out I can’t do it. I don’t have the resources to act any more, so I have to live as I am, now acutely aware of my heightened senses, but also no longer making myself be strong, no longer forcing myself to block them consciously, even though they are sometimes overwhelming.

Couple all that with the anxiety I’m still getting just leaving the flat, and you’ll begin to see why going out for a walk was such a big deal today.

And so my strategy was to make this first outing as easy as possible, so that all my energy could be focused on getting out of the flat, dealing with the overwhelming light, sound, smells and so on, and overcoming that initial hurdle of actually starting anything at all.

So no running clothes yet (there’s a sensory issue with fabrics touching my skin which I will have to deal with), and not yet backpacks or belts or other such kit. Daytime clothes, my familiar handbag for keys, phone, and inhaler, but just two relatively easy adjustments to my normal “leaving the flat” gear – my running shoes and my Garmin.

Tiny tiny adjustments. Minimising the “difference”. In order to get out at all soley for the purpose of exercise, without the pressure of an appointment or another person expecting something of me.

And a “workout” so easy that it didn’t tax me physically. I know I can easily walk 2 kilometres, so didn’t have to put that part of it into the pile of obstacles in my brain, didn’t have to factor in a tough training session when persuading myself just to go out at all.

And I took a regular route that I run often, a known 2 kilometres. In the early afternoon when most people would likely be at school or work, and I’d have as little chance of encountering people as possible.

And so it happened. Starting over. Picking up fragments of my old life, the life that fell to pieces when I discovered I was autistic. The life that almost ended in December. The life that I now have to rebuild, differently, readjusting now that I know better what will help me to stay well.

The absence of either job or offspring in my life, coupled with my extreme burnout and wildly fluctuating moods, has meant that there has been very little “normality” of any sort during the last six months. Learning about autism and my being autistic has been fascinating, but I am also worn out by it – my entire life has been consumed by it for months. I need to ease off – my head is full.

It’s time to reclaim just a few bits of “normal” life.

Slowly, gently, with space in between to recover.

A couple of kilometres at a time.

Disparate Facts

I’m going to tell you a few facts about me. These things have always been true. They are, on the whole, things that I have always known about myself. For the last 45 years they have been steadily accumulating, and just regarded as my “quirks” by everyone who has known me and known about some or all of these things.

1. I never go to the cinema. Although I went a few times as a child it was never at my initiation and as an adult I’ve hardly ever been. The last time was over a decade ago and we left after the first 20 minutes.

2. I was really naughty at primary school, constantly on headmaster’s report, constantly in trouble for various things, and not really getting any significant work done.

3. I do not know the name of any other person (apart from my husband) in the town where I live. I do not know my neighbours’ names and have never spoken to any of them.

4. I am deeply unfashionable, never wear make-up or a bra, and am utterly unable to comprehend why, say, wearing socks with sandals could be wrong since it’s comfortable and easy.

5. I really like even numbers and most particularly numbers with lots of factors. I like square numbers, and I believe numbers have a sort of hierarchy where some are more relaxing than others.

6. I scratch my head a lot and pick the skin off my scalp. In my 20s I did so very very badly and had open wounds on the back of my head. I didn’t know why I did this, it was just a thing I did.

7. If I spent 20 minutes or so in our storage unit I start to feel very very exhausted and sick. I have to sit down and I then deteriorate to the point where I have to go outside.

8. Sometimes I go really really quiet and just stop talking. It usually happens when I’m really exhausted or really stressed or I’ve just become really angry about something.

9. I cannot tell the time easily from a traditional clock face. Neither am I very good at telling left from right without thinking about it really hard and making writing movements with my fingers.

10. I was bullied all the way through school, even at secondary school where I wasn’t regarded as naughty any more, but as a bit of a geeky strange kid.

11. I’m a really rubbish cook. Before I was married I lived mainly on takeaways and toast, and I often forget to eat and have very little idea of how hungry I might be.

12. I sometimes get really really stressed and angry at everything in a really really short space of time and need to run away or hurt myself and I have absolutely no control over it.

13. I have never been able to keep a job for a sustained period of time and most of the jobs I’ve had I’ve left with some sort of mysterious mental illness, usually given as depression.

14. Left to my own devices I take my shoes off and sit with my legs crossed like in primary school assembly, or sometimes with them folded underneath me.

15. I get really stressed when I’m near the fridges in supermarkets. I usually leave my husband to do all the fresh food shopping and spend my time sniffing every single sort of fabric conditioner.

16. I have never had, or wanted, a satnav machine. I love looking at maps and if I have to go somewhere I don’t know then I look it up in advance and memorise the map.

17. If I am going to do an exam and I agree to meet up with people in the pub afterwards I will be much much more nervous about the pub than I am about doing the exam.

18. When I start a new hobby (or resume an old one) I take it very very seriously. I buy loads of books and research it online and often work on it late into the night.

19. My legs jiggle almost constantly if I don’t consciously try to stop them. I cannot sit still and have been known as a fidgety person all my life.

20. I will automatically assume, once I’ve finished writing this blog post, that you’ve already read it, even though I haven’t posted it yet! I will have to keep reminding myself that this isn’t the case!

If I had listed these facts a year ago I would have seen no connection between them whatsoever – they would just have seemed like a list of random unrelated facts. In fact, I would never have even contemplated making such a list – why on Earth would I have connected my inability to cook, with my avoidance of the cinema? or my behaviour at primary school, with the fact that I have never owned a satnav? or getting exhausted at the storage unit, with resisting fashion trends and not wearing make up? Thinking about these these things there seems to be very little connection, if any at all, between many of them.

Until you start playing “autism bingo”!!! I should imagine that, if I gave this list to a group of autistic people, many of them would look at it and say “Yes, me too, me too” or something similar. Obviously, not every single thing would apply to every single person (everybody’s different after all), but the minute I started researching autistic traits and examining my life, the above list of apparently disparate facts suddenly links up and makes perfect sense. It seems that I wasn’t really “quirky” in the way that I thought – these are all just standard manifestations of autistic characteristics!

I’m fairly certain that I will discover many more things that could be added to the list above as I continue to examine my life from an autistic perspective.

It really is about understanding.

Strategy Deployment

Yesterday I went out again, to something social, where I met quite a lot of people, and where I was out of the house for quite a lot of hours. I went to an afternoon symposium, a series of lectures, then to dinner, once again in my old college.

I employed similar planning strategies to those described in Out to Dinner: a couple of days’ rest beforehand, comfortable clothes, stim toys, dark glasses, and plans for an easy couple of days afterwards so I knew that I could take my energy levels into the red zone if necessary because once I was home I didn’t have to do anything at all except breathe (and that’s something that usually happens without my having to think about it).

Additionally I took some attenuating ear plugs (originally bought for potential use in noisy orchestras and recently discovered in a pile of stuff) and my recently acquired ear defenders, just in case I found a way that I could usefully use them.

It was an interesting afternoon and evening in many ways. It was interesting in the ordinary way in that I learnt some stuff from each of the lectures. I also saw several people I hadn’t seen for a few years, and some others I’ve seen more recently, and it was good to catch up with them. And, of course, it provided me with an opportunity to continue analyzing what I can cope with when I’m out in the world, and what I can’t.

Apart from the dark glasses and slightly more casual clothes than was the norm, the first thing that might have been described as slightly out of the ordinary behaviour was the way I sat during the lectures. I took my boots off and sat with my feet tucked under me, my legs up close to my body, in various formations throughout the afternoon. I nearly always sit, by choice, in some variant of this position.

Very interestingly, I went to a similar symposium in that very same lecture theatre a couple of years ago. I remembered sitting in exactly the same way. I wasn’t wearing dark glasses, but my clothes were still slightly more casual and I sat with my feet tucked up under me in the same way. And that was years before I knew anything about autism, about the beneficial effects of “pressure stimming” (I still have a whole blog post to write about that stuff sometime), and before I realized that I was doing something, perhaps a bit socially out of the ordinary, because that was something that my body needed to do in order to feel OK.

(As an aside, I made no other adaptions on that occasion a few years ago – and I remember it being one of the nights that I woke up in the small hours afterwards feeling sick, shaky and very very wrong – that was always the norm for me after such events. Now things are changing.)

My first real break with “doing what everyone else was doing” was at the tea break between sessions. I used the strategy that I’m now getting used to during the breaks of orchestral rehearsals – get myself a cup of tea then get out of the room with the voices and the noise and the crowds of people as quickly as possible. I went to stand outside in the quadrangle. I was joined by a friend (the one mentioned in the first sentence of Out to Dinner), who gave me a biscuit (a good idea, since I hadn’t yet managed to eat) and asked whether I was OK with him being there or whether I needed to be alone. Since I’m comfortable with him and he knows what’s going on in my life I was happy for him to stay. It wasn’t difficult out in the cool air away from the artificial lights and the noise of too many voices.

When we went back for the second session I knew that my senses were already beginning to tire as the sounds of the voices of those speaking seemed much much louder than they had done during the first session. I decided to try the earplugs. They helped. And not only did they help with reducing the volume of the speaker’s voice to a manageable level, but they really really helped with one of the most painful noises of all – applause. I’m now trying to work out whether there’s any way I can use them in concerts, because applause is a sound that I’ve always found, at best, unpleasant, and at worst, really very painful.

I also felt perfectly justified in wearing something in my ears to alter my hearing perception because there were several in the audience also wearing things in their ears – though they were trying to enhance their hearing and I was trying to reduce mine!

Interestingly, I also looked round to see what other people were doing in terms of stimming. I noticed someone rubbing their hands, someone playing with a pen, and someone jiggling their legs and playing with the hem of their trousers! I’m noticing all these things much more nowadays (again, there’s a whole blog post to be written about this – I have so many things I want to write about, but I can’t make all the words at once)!

After the second session there was a drinks reception in a very reverberant space. I stayed for only a few minutes because I knew it was seriously overtaxing my system. I left everyone else to it and went outside and sat on a step, rocking, in the twilight (and the freezing cold – really should have taken a coat) and put my ear defenders on. I was there for maybe half an hour until the cold got the better of me and I ventured back inside, still wearing my ear defenders, and eventually found a couple of friends and we headed off to dinner.

That time alone, cutting the world out, making everything as silent as possible (not completely silent, but significantly better), and stopping all interaction or worrying about sitting still, really really helped. I would have liked to be at the reception. I would have liked to have been drinking wine instead of elderflower fizzy stuff, I would have liked to be networking, chatting to friends, catching up with everyone, looking at the exhibits and so on, but I am learning that this is the sort of thing that I need to ration very very heavily in order to be able to stay well. This is one of the ways in which I am, perhaps, most disabled – I cannot take part in events such as noisy drinks receptions for any length of time unless I accept that it will have a seriously negative impact upon my health. I have long known that parties and so on tire me beyond belief and cause me to become seriously unwell afterwards – I do at least now know why and I can start to control things a bit.

Refreshed from my “time out”, I was then able to go into dinner, chat to people around me with some confidence, and to spend an evening in the Common Room, which actually turned out even to be enjoyable. My best friend ensured I was sitting in a reasonably advantageous position at dinner (as close to a corner as possible to avoid sensory input from all directions), I took care not to over eat, as before, and later, when I started to feel slightly dizzy and unable to comprehend words while standing and increasingly failing to take part in a group conversation, I went to sit down. I’ve also discovered that I find conversation much easier when I’m seated – If I’m not using energy to stand then I have more available to be able to convert thoughts to words!

So this week’s “event” went well. It was also easier than previous times doing similar things have been. I suspect this is partly because I’m starting to see a bit of recovery from burnout, partly because I have a new-found confidence following my diagnosis (more on that in a future post), and partly because I’m learning what strategies work to help me get through such an event without ending up sick for days afterwards.

Admittedly, I had to adapt my behaviour quite considerably yesterday, I didn’t get out of bed until after 2pm today, and I wouldn’t have been able to hold much of a conversation this morning (I tried a little speech earlier but it was really hard work and since I’m here alone I didn’t even bother using that amount of energy for anything more than experimental purposes), but it’s progress. It’s working out how I can best function in the world and get the most possible out of life without destroying myself in the process!