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!