Another Step

Having admitted to myself that I was autistic, and having already approached the doctor to be referred for diagnosis, I knew there was something else important that I had to do. I had to let my family know what I’d discovered, and the obvious place to start with that was to call my mother.

I recorded my feelings about doing this:

Deep deep breaths. That was a biggie. Told my mother.

And then noted some of the things that she had immediately said when I’d told her that I would need information about my early childhood and please could she start thinking whether there were any incidents that occurred in my early life that she could remember, or any ways in which I differed from my brother (who is not autistic) when we were young, and could she possibly just start thinking back to the time of my early childhood and triggering memories because the assessment people would want to know.

And without even a pause for breath, my mother remembered being summoned to my primary school (as I’ve described in Circles) when I was 4 years old. She recalled me learning to read at age 3. She recalled my nursery teacher commenting on my behaviour at nursery. She recalled something about a hearing test at 7 months that went wrong because I didn’t behave like a 7 month old should and the person administering the test telling her off about it. She told me how I didn’t respond to spoken words as a baby, only to singing, and how I hardly slept and constantly fidgeted in my pram.

And all this was instantaneous recall, the moment I asked, with no pause for thought. Memories from over 40 years ago. Little things, none of which seemed significant at the time, and none of which was ever followed up (because it was the 1970s and I seemed healthy as far as anyone could tell and when my mother asked what babies were supposed to do (I was the first child and my parents were young and inexperienced) she was told that all babies develop in their own ways so not to worry about anything), all started to indicate that my development when I was very young was, in fact, rather a long way from what would be considered “normal” by most people.

This first conversation was, it turned out, only the “tip of the iceberg” as far as my childhood was concerned. There were further pieces of information to follow, and I’m still, really, in the process of absorbing them all and trying to go through the questionnaires that we did as part of the assessment process. Maybe I’ll manage to write about it all thoroughly at some point, but that point is not yet.

My instant reaction to these revelations was to make a bunch of hashtags:

#theplotthickens
#wouldseemivebeencausingtroubleforalongtime
#thiswholethingisratherextraordinary
#ialwaysknewiwasabitunusualbutbloominheck

I subsequently went through a phase of finding these discoveries about my early life really rather odd and weird, and in many ways, traumatic. It was strange to think that there were things I’d never have discovered about myself and my early life if I hadn’t been going for an autism diagnosis. My husband and I had started to document my own memories of childhood a couple of weeks earlier, but this phone call to my mother took things to a whole new level, because I started to discover things that weren’t part of my existing life narrative.

Furthermore, since I was never able to have any children, I didn’t know whether the things my mother was telling me about my early life had any resemblance to any sort of “normal” childhood development or not, and I ended up having to do a lot of really triggering research to find out, research that brought back horrible memories of infertility clinics and pain and heartbreak and failure, so it turned out to be a triggering and difficult experience from that point of view too.

And, of course, my own memories of childhood had to be activated. And many of them weren’t that much fun either – I was bullied consistently through school and even when teachers tried to find out why things weren’t as they should have been, they weren’t able to come up with any answers, despite sometimes trying, as I described in Head’s Office.

These things are things I still haven’t yet worked through, things that still upset me, things that I know would have been picked up if I was a child today. I can’t help feeling that had I known that I really was different when I was growing up, not just naughty, that I would have felt less bad, been less self-blaming, and not become the suicidal burnt out adult I now am. I’m still not really in a place where I can consider all the things I want to consider – I have to do it a bit at a time, because it is difficult.

My mother, somewhat comfortingly, said to me a few months after that first conversation, that she wishes she had a time machine. Of course, there are so many factors at play that it’s impossible to say that changing one thing would have produced this result or that result (I KNOW all the stuff about autistic kids being “written off” and told they’d never be able to get anywhere in life – I had exactly the OPPOSITE problem and was consistently told how bright I was and given massive expectations accordingly, expectations that I could never fulfill so I was doomed to failure). However, maybe I’d not have been chastised for meltdowns, not been forced to wear wool polo necks which hurt me and so on, and not have learnt, through my early years, to behave and to internalise everything because I was frightened of the consequences and the punishments.

Furthermore, because I learnt fast and turned out to be academically able, by the time I was at secondary school exam stage nobody worried about me. I was succeeding academically, top grades of my year, therefore I must be happy. What nobody knew is that I hardly bothered revising for my O-levels because I assumed I’d be dead by the time the results came out. I didn’t tell anyone because I’d learnt by then that you just didn’t talk about that sort of thing. You worked hard, you behaved, you churned out the exam results, and everyone was happy. It was all part of the act.

Except that the act had a massive cost for me – the thing that had eventually made me as well-behaved a child as I was able to be, turned me into a mentally ill twentysomething and a burnt out thirtysomething. And nobody really knew why until I was in my mid forties.

Getting an autism diagnosis late in life is a weird thing. It opens all sorts of cans of worms that have been sealed shut for decades. I had long since closed the door on my childhood, and on everything to do with children in general, sealed away in a place in my head marked “Do not open – just move on with life!” but I was forced to reopen the door, to take the cans off the shelves, and to let the worms loose all over the place. It was part of the assessment, and it is part of coming to terms with why my life has turned out as it has. It’s something that needs to be addressed as best I can in order to move on and try to build some sort of future with whatever life I have left. I’m not sure it was something I particularly wanted to be doing at this point in my life – having just moved away from all things child-related after my own failure to have any, the last thing I needed was to go back to my own early life – but it turned out to be necessary, and perhaps going through the painful stuff now means that there will be less of it buried and I’ll eventually be less mentally ill as a result, more at peace with it all, and maybe, possibly, more at peace with my own childlessness and consequent response to children, which is something I still struggle with terribly.

And, as I have read in so many places and am experiencing for myself, getting an autism diagnosis late in life is not only about the future, and learning how to live from now on, but also about reframing past experiences, reviewing all of life that has gone before, looking back at so many times when things have gone wrong, or been inexplicable, and looking at them from an autistic perspective. It’s part of the process of making sense of life, and, of course, the later the diagnosis, the more of life there is to go through.

And in my case, it’s not just me who is reframing past events. Many of my friends have now made sense of experiences they’ve had with me over the years. My husband now understands things that have long been slight oddities in our marriage. And my family are trying to understand the whole thing.

I made the first phone call to my mother a year ago today. It had taken nearly 45 years for her to find out why her non-sleeping fidgety baby had messed up a hearing test at 7 months old. As soon as I asked the right questions and explained what I’d recently discovered, it became obvious.

I didn’t even know I’d had a hearing test at 7 months until I started gathering information for an autism assessment!

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Wild Idea?

A year ago today I posted the following status on my facebook wall:

What a day. Along with flu jab and asthma review, a very successful meeting with the doc who listened to a whole load of my waffling and has put in a referral to the sort of docs who will try to fathom what’s going on between my ears!*

Feels like a huge relief and real progress.

*good luck with that then folks!

Since, at the time, I wasn’t telling very many people about the “autism hypothesis”, I didn’t elaborate further on my visit to the doctor. It was easy just to talk vaguely about what might or might not have been going on between my ears and also to refer, as I did in another post, to “head stuff” because it had been well known for years that I had considerable mental health problems and I was already totally open about them, so, for most people that probably covered it.

What I didn’t mention at the time was that we’d purposely made a double appointment with my GP, and that I took my husband and about a dozen pages of notes with me. We’d made the notes while out on a walk a few days earlier (“Starting to examine my childhood”, from Still Here), taking 25 kilometres and six hours and several cups of coffee to persuade my brain to start thinking back to my childhood, and to pause every so often while my husband wrote my rambling thoughts down in a notebook he was carrying. I think very much better while on the move – in the car, walking, running – so it seemed like a good way to approach things. It had been a strange process, forcing myself to think back and to remember things I hadn’t thought about for decades – as far as I was concerned, the “real childhood memories” file had been closed long ago and I just remembered the sanitized version as part of my life narrative. I certainly hadn’t tried to remember the difficult bits, the painful bits, the bits that were needed for an autism diagnosis.

We’d already been at the surgery for some time before the appointment with my GP because it was also time for asthma reviews and flu jabs, so we’d seen the asthma nurse and discussed inhalers and so on first. By the time we were in the waiting area for the doctor I was ready to go home. I regretted that the only way of getting to the surgery was by car and so I couldn’t even have a drink to try to calm myself down. We sat and stimmed in the waiting room (although we still didn’t refer to it as stimming at that point as we’d only seen the word a few times and weren’t quite sure what it actually meant), and I was determined not to bottle it and give up.

I didn’t even know, back then, what “self-diagnosis” was. It didn’t occur to me that, having found something that might be “wrong” with me, my first course of action wouldn’t be to go and see a doctor, not because I had any notion of being “fixed” but because I believed that, as with bipolar disorder, with which I had considerable experience, autism was something the medical profession might help me manage (that turned out to be somewhat optimistic on my part)! I also, even at that early stage, needed official permission to “be autistic” and the thought of telling anybody that I was without an official piece of paper seemed far too wild to even consider. My thoughts on official diagnosis were developed further as time went on, and I examined some of them in Why Bother?

Once we’d been called in for the appointment, the conversation ran something like this:

Me: Hi Doc, this is going to sound well random and well weird and you’ll probably think I’ve gone even more bonkers than I usually am, but I had a bit of a strange summer and my head went a bit wrong and a bunch of folk said they thought I might be autistic or something so I read a couple of books and we made some notes about all sorts of stuff and, er, here we are, and, yes, I know it’s a bit barmy and a seriously wild idea and stuff and… but anyway… erm… well…

(all the time, jiggling my leg, flapping my fingers, and staring fixedly at a bit of badly done paintwork in the corner of the room)

I then looked hopefully at my husband because I’d run out of what to say next.

The doctor saved both of us having to say anything.

Doc: Oh of COURSE! It’s so absolutely obvious now you mention it. So sorry for not knowing earlier, but with only short appointments and so much to get through and so little time to spend with you…

(then, the doc paused, as if a thought had just come out of the blue)

Doc: Didn’t you have an incident at the swimming pool a few years ago? And they called us here and said you were violent and aggressive and you came in and said you weren’t violent at all but you were scared and distressed and they’d got it all wrong…

(there followed discussions of meltdowns, of how these episodes had been happening all my life, and of various other things, and by this time I was rocking hard in the chair and the pennies were dropping fast in the doc’s head, just as they had in mine a couple of weeks earlier)

The referral for formal assessment was being started before we were even out of the door. My GP had needed no convincing whatsoever. I didn’t know then that that had been the easy bit, and that finding somebody who could actually diagnose me as autistic would take a whole load more work, and that “letting the medics take it from here and look after me” wasn’t an option, and that I’d have to do my own research, fill in forms seemingly infinitely (that’s what it felt like at the time), and that I was only at the beginning of a very long journey, but that journey was underway.

I left the surgery and went round to my best mate’s house for tea. I told him that yes, the doc thought I was autistic too. He already knew what was going on and was totally cool with the whole idea and thought it made absolute sense. I then went off to a rehearsal that evening, and then away for the weekend to play music, still very fragile and broken after the summer, still reeling from the discovery, but starting, already, to accept myself as an autistic person, even at that stage. I still hadn’t actually said that I WAS autistic at that point – every time I mentioned it to anybody it was “it’s been suggested that I might be autistic” taking the label (or diagnosis, or whatever you want to call it) for myself without anyone giving me permission to seemed to be terribly presumptious at that stage, so I stuck to “might” and “a possibility” and so on.

The fact that my GP believed it made a huge amount of difference though, and something that had been “just an idea being pondered by me and a few mates” became something a little bit official. We’d told someone “proper”, who hadn’t dismissed the idea, and had, in fact, confirmed it.

I regained a little bit of confidence. Maybe I wasn’t totally crazy after all. Maybe this wasn’t some sort of “weird thing that happened over the summer but now we’re back to normal life everything just goes back to how it was and the “holiday romance” is over!”

It still felt really odd. Two months earlier I’d had absolutely no inkling that I might be autistic at all. I wasn’t one of those people who’d “suspected for a while” because I didn’t have enough knowledge of anything to suspect. I’d only started taking the idea seriously and investigating it properly myself about three weeks earlier. The whole of life felt so very peculiar and weird and like it had all gone a bit crazy somehow. My mental state was still fragile, and was, in fact, although I didn’t know it at the time, getting worse. Things felt wrong…

…but things also, suddenly, after over 4 decades of a different sort of wrong, felt right.

Lost Day

I woke early, feeling exhausted, and not a proper sort of sleepy exhausted, but an odd sort of depleted exhausted, like all the energy had drained out of me somehow and I could hardly move. I could hear birds, very very loud birds, wood pigeon calls burning the insides of my ears.

I knew I had to be somewhere today. I knew also that getting there would be difficult. I looked at the schedule for the rest of the week, which I had photographed and saved on my phone. I tried to work out what I might be able to skip without causing too much inconvenience or annoyance. My head wouldn’t think very well, so I started to try to type into my phone:

If this were real life and I’m at sensory levels of now and tiredness. Would be schedule looking.

This was how the language emerged from my finger. I knew it was wrong and that it needed editing. And I also know that when WRITTEN language becomes difficult and starts to go wrong in that way, that I’m heading into shutdown. This is something I’m starting to learn, now that I’m actually observing myself with some knowledge, rather than just declaring myself “ill” or declaring that “my head went wrong” as I have done in the past.

I attempted to speak. There was nothing. No surprise there. If the written words are starting to go wrong then the spoken ones are almost certainly non-existent.

It was still early. I still had to get a message to the outside world that I wasn’t going to be where I was expected to be. The best I could do was to message my husband a few words and hope he could interpret what I was trying to say in order to convey some sort of message to those who needed to know that I wouldn’t be appearing for rehearsals this morning. He received the following messages:

Fail now. Is. Words. Morning. Not.

Now. Schubert. Prob. Can’t.

Tell.

Write hard. Speak not. Food not. Later.

And because he has long experience of such communications, he was perfectly able to send a message saying that I wasn’t able to get to the Schubert rehearsal and had asked him to pass on the message and that I didn’t need food and wouldn’t be able to communicate for a while.

At some point during the morning someone brought me a cup of tea and left it outside my tent. I was unable to respond, unable to move from where I was curled up under the duvet, unable to do anything at all for a while. This is all absolutely normal for me at such times, which have been happening since my early childhood. My mother observed the behaviour, still remembers it well, going right back into my early childhood, and even had a word for it, zonking, which I mentioned in Losing The Words.

Having successfully conveyed a message of sorts to the outside world, my brain then simply closed off. I slept a bit. I lay there staring at the side of the tent, a bit of plain fabric being as much visual input as I could take. I didn’t move. I couldn’t move. I don’t usually remember much from these times, just a feeling of being utterly drained, no energy at all, and something like a deep depression, not being able to form thoughts properly, no ability to translate things into words, nothing. My head is simply closed for business and my body follows it. There is nothing to do at that point except wait – it’s like some sort of reset is required before my overstimulated and exhausted brain will function properly again. I don’t respond, I don’t communicate, I just lie there and breathe, nothing more.

After a few hours I regained the ability to type and to form words and typed some of the thoughts that had by then started to emerge from my head into the notes app on my phone. Having established that I could once again produce proper typed sentences, I was then able to contact the outside world by facebook without my husband having to make the sentence structure for me. It was lunchtime. I was aware that I hadn’t eaten or drunk anything all morning (and couldn’t have – something else my mother had observed about zonking was that food was an absolute no during those times, and when I have attempted to eat or to keep functioning I have simply ended up physically sick and it’s been assumed I had some sort of bug or similar).

Somebody brought food and left it outside my tent. I was unable to thank them except online, but was able to eat by mid-afternoon, and was, it seemed, by this stage, quite hungry – even though I didn’t feel any sort of hungry, once I started to eat it was obvious that I was.

It took another couple of hours for the shutdown to be properly over and a further hour for spoken words to fully return. Although I can’t always tell when I’m going IN to shutdown, or that that’s what it is (though I am getting better at recognizing it as I’m learning), it’s really obvious when I’m emerging because I start to stim again, I start to rock and to move and get back to what for me is “normal”, a state of dynamic equilibrium as I like to think of it. For me, being still either means I am masking furiously and working hard to stay still, or I am ill and in shutdown, or I am asleep, or, occasionally, that I am relaxed under a weighted blanket or completely immersed in something or similar. The rest of the time I move, and that movement restarting is always a good sign – it’s the feeling that you didn’t know something was wrong until it was solved, and the minute it’s solved it was obvious how wrong it was before!

My sensory system remained on high alert for the rest of the day – I managed to go and sit in the audience to hear some of my friends singing and playing music, but used earplugs against the applause and was deeply grateful to a friend who asked others to move away from me to give me some space during the performance.

By mid-evening I was able to drive home, where my husband had “the food” (whatever I’m currently eating we call “the food” – I have cyclic obsessions with food where I eat the same thing every day for months, and always have done) ready and waiting for me, and I spent the evening doing all the familiar routines and being with the animals and recharging properly ready for the next day.

But what should have been a day participating was basically lost to a massive shutdown, and there was nothing I could do about it. I would have liked to have been in the rehearsals that morning. I would have liked to go to tea that day. I would have liked to join in the celebratory feasting and dancing (although I knew that the feasting would have been a non-starter anyway and I’d have been eating alone somewhere quiet), but I couldn’t.

But at least I know what causes these times now, and I have a word for them, shutdown, which makes sense to me and enables me to understand what’s going on. At least I have people who are willing to understand it too and to bring me food and so on and to help me out when it happens. And I know that I’m not getting some sort of illness (as has been suspected on many occasions in the past) and that I will feel better in a few hours’ time – I just need to wait, to be on my own, and to have as little input into my system as possible.

Last year, when the same thing happened, all I knew was that I felt inexplicably awful and couldn’t even tell anyone how or why. I spent a night silently crying in my tent in the dark, without food or help, with nobody even knowing where I was because I’d lost all ability to communicate and wasn’t even able to type a message to my husband. And short of “something mental health related or maybe a virus”, I had no idea why I was like that.

This year wasn’t ideal. It’s not really how I want to live my life, missing out on good times, having to skip rehearsals, having to sit on my own because my system can’t cope with much social interaction or noise, and so on. But it is better than the distress of previous years, than the anguish of desperately trying to function, trying to make things work, having to call in with some “unknown illness”, making myself worse by continuing to try to speak or function as I “should”.

I don’t like having to live this “half life”, which is what it feels like. But knowing why these things happen means I’m much less self-blaming, much kinder to myself, gentler to myself. And simply allowing the inevitable shutdown to run its course and not trying to push myself out of it means that I actually recover more quickly and am generally healthier as a result. Maybe once I’m more fully recovered from the recent burnout I’ll be able to do a bit more – I do hope so.

It does still all feel very much like a work in progress still. I have my answer as to why these things happen to me, but I now have to work out the best way to live, which I haven’t quite managed yet.

The Preparation

Right from the start things were very different with the second referral. I think the triage service had given some explanation as to what had happened at the first place and had instructed the second place to see me as soon as possible, and we were also much better prepared and aware of what I might need in order to get through an autism assessment without having a giant meltdown part way through.

There was still, certainly, a lot of tension involved. The second place to which I had been referred was in the midst of a reorganisation period – it had, officially, closed and was being reopened under a different name and we had no real idea of timescale as far as when I’d be seen once the reopening had occurred. We also still had the first referral open, and had they been able to find someone to assess me at the first place there was a chance I’d have to go back there anyway. And, of course, there was the whole build-up to go through again, the nagging doubts that I wouldn’t be diagnosed autistic, that I would come home feeling broken and suicidal once more, and that there still wouldn’t be any formal answers as to why my life had been going so badly wrong for so many years.

I went through Formageddon all over again, once more trying to answer everything as best I could and to explain why I’d answered the more ambiguous questions as I had. We were also sent another (different) list of questions to ask my mother, so there were a couple more sessions of phone interviewing and learning even more things about my early life and how I was when I was very small. Everything was, as before, written down, duly answered, copied, printed, scanned, and so on, and sent to the assessment people.

We started to feel a bit happier when good e-mail contact was established between the assessment people and my husband. They acknowledged receipt of the forms and a few other bits of information we’d sent to them, and the appointment for my assessment was made. The third attempt to get a formal autism diagnosis was, it seemed, going ahead.

My husband then received an absolutely superb e-mail that felt very reassuring. It described the building where the assessment would be held, the lighting, the furnishing, and outlined that once we arrived we could organise the layout of the room to be as comfortable as possible. It was made explicitly clear that I was welcome to take cushions, blankets, fidget toys and so on with me, and that we’d agree on a schedule of breaks throughout the assessment time, which was given as around three and a half hours. An outline of the format of the assessment was also sent, and parking at the venue was also mentioned. It felt very encouraging and we started to believe that these might be people who actually knew how to communicate with us, who understood that we needed clear information and practical help.

They also made it clear that we were welcome to send information in advance and that that would be helpful to them and would also mean that if there were things I was unable to explain in spoken words on the day they would already have the information so that wouldn’t be a problem. We’d sent around 60 pages of notes and information to the first centre although there was very little evidence that they’d really looked at it and I felt a bit jaded about the possibility of sending things that I was working hard to produce that might likely never be looked at. However, we determinedly made ourselves take a “clean slate” approach and I set about providing as much information as I possibly could, including sending the original files of some of the early posts on this blog.

Then came an even more reassuring document – a more detailed outline of what we were going to discuss on the day, along with explicit statement that there were no “right” or “wrong” answers. It was made very clear that the assessment was not going to be about “passing” or “failing” some sort of test and that the criteria on which I would be assessed were not some sort of “cut-off” on a quiz, but on a whole lot of different things regarding the way I communicated, interacted, behaved, and so on. This was not a “box-ticking-getting-a-score” thing, but an exercise in observing me and finding out how I thought and felt and communicated.

I set about going through the outline, answering everything as best I could, and saving it to yet another document in the growing “Autism” folder on my computer – another document full of evidence and thoughts, another 10 pages to add. By the time I arrived at the assessment itself, I had sent over 120 pages of 11-point Calibri for the assessors to read, some of which we’d printed and posted, and some of which we’d sent by e-mail, the last batch just days before the assessment itself. The feedback we’d been receiving by e-mail suggested that the assessor was actually reading it too, and I was absolutely desperate not to miss anything out, to tell the full story, to supply as much information as possible. After all, they’d said on the appointment letter that the more information I could supply, the better, so I took them at their word!

The final bit of pre-arrival preparation was an e-mail to tell me exactly who would be at the assessment (two people, one of whom would be asking the questions while the other mainly observed so I wouldn’t have to cope with talking to two people at once), and to inform us that a parking space had been booked and would be signposted and to give us a mobile phone number to contact if we got into any difficulties on the day.

I think we were about as prepared as it was possible to be!

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!

Content Report

During my conference day I attended five presentations in all, three plenaries, and two from Stream A, which I had selected as the one I’d deemed most likely to have the least “child specific” content when the initial programme was published. I was, however, pleased to see that the slides for all streams had been included in the conference pack so I’d be able to look through them later.

At this point, I’d like to add a content warning. The titles of the talks I attended were: Exploring depression, Coping strategies for anxiety, Deliberate self-harm in children and adults with autism, Autism and psychosis, and, Catastrophising – why do we do it and how can we deal with it? As you can probably guess from those titles, this wasn’t exactly light-hearted subject matter, and suicide, suicidal ideation, and self-injury were discussed on several occasions. This whole blog carries, on the home page, a warning about such things, but this post might be a bit heavier on such content than usual, so might be one to save for later if you’re currently vulnerable. I should also say that I’m using language I wouldn’t usually use (for example “people with ASD”, and referring to autistic people as “they”) to reflect the way some of the speakers presented more accurately, even though such language is not preferable to most autistic people, and definitely not to me.

This blog post might also be one of the longest I’ve ever written, but I wanted to include the whole conference in one post rather than splitting it. I’m also aware that I’m simply reporting on the material presented and where I’ve commented on that material it has been entirely from personal experience. I have not, at this stage, made attempt to verify or refute any of the material from a scholarly or research perspective.

***

Tony Attwood began with his talk on depression, which linked in with his recent book “Exploring Depression and Beating the Blues”. He outlined the proportions of those with ASD who had depression as being approximately one third each of continual depression, cyclic depression, and no depression. He discussed “depression attacks” as something that “they” go through, and described how, at those times suicide was possible simply because the person suffering the “depression attack” would be desperate for the pain to end. Certainly, my own experience when severely depressed has been that my primary motivation for the suicide attempts I’ve made, or the ones I have planned but not executed, has been a strong desire for the pain to stop.

Attwood went on to discuss the overt pessimism of people with ASD, their diminished vocabulary to describe their worries, difficulties with friends, sensitivities to sadness in others, how sadness and anxiety seems to “stick” in the brain more than happiness, and how they accept “I’m stupid” messages more readily than others. Intellectual performance anxiety was also discussed, as many people with ASD struggled with sport and socialising they relied heavily upon intellect for self esteem (this was certainly the case during my own teenage years).

“Special interests” and their role in combating depression were discussed. The old clichés were wheeled out – dinosaurs received a mention, and the description of a child who had stated they “wished to be a robot” raised a titter of laughter from the assembled delegates. It was asserted that people with ASD liked to describe themselves by “what they do”, and there was a brief discussion of teenage girls with ASD and how they were not bitchy, and were likely to be interested in opera at age 15, so might come across more like a 25 year old while being emotionally less mature. While I’d have challenged Attwood on the emotional maturity thing, I recognised myself as a teenager who wasn’t much interested in other teenagers – although in my case I was into string quartets, symphonies, piano concertos, tone poems, and oratorios – my love of opera didn’t really blossom until I was at College in my early 20s!

There was some slightly uncomfortable discussion of how “Britishness” corresponded to “Asperger’s Syndrome”, with mention of Oxford and Cambridge, and the Antiques Roadshow, which Attwood subtitled “Spot the Aspie”! Train spotting and people who were still virgins into their 20s were also mentioned, and the assembled audience once again laughed obligingly, succumbing to Attwood’s skilful rhetoric.

Attwood’s slides provided an interesting checklist (presumably taken from the book – I don’t yet have a copy of it) of signs of depression, and he also discussed strategies that might be deployed to help. I very much liked his concept of an “Energy Bank Account” (pretty much the same thing as I use when I talk about “spoons”, and which I’m currently working on for my own monitoring of my own energy/spoon levels). He discussed the need to treat depression before an ASD assessment can accurately be made, he discussed exhaustion, and also mentioned that if enthusiasm for a usual, big, special interest was gone then depression might have taken root very deeply. He talked about animals often being better than psychologists in some circumstances – that very strongly resonates with my own experience!!! Medication was also briefly mentioned, as were unhelpful tools (such as alcohol – my own “self medication” of choice), and possible strategies for staying safe during a “depression attack”.

***

The second plenary was given by Wenn Lawson, who I’d been very keen to hear as I’m very much enjoying The Nine Degrees of Autism, which he co-wrote with Philip Wylie and Luke Beardon. Lawson, who, unlike Attwood, is actually autistic, was instantly relatable. He outlined how applause was painful, which is absolutely the case, and was keen to voice concerns that there might become an “us and them” situation with autistic and non-autistic people. He also mentioned the need to build resilience in autistic people.

Much of the first part of his talk was focused on the notion of object permanence, and how much the lack of object permanence in autistic people can generate anxiety. Object permanence is that knowledge that something is still there, even when you can’t see it. Lawson mentioned his need for a photograph, a visual reminder, of his partner. Lack of object permanence on my part is the reason that we don’t put food away in a cupboard in our flat – if it’s out of sight it simply isn’t there, so my husband leaves it as visible as possible to maximise the chances that I’ll eat!

Lawson also discussed how autistic people rely on being interested and how special interests can be something other than traditional “hobbies” – they could be connected to something to wear, something to eat, or similar. Of course, developing a rather strong interest in autism was the whole reason I was at the conference in the first place – so this made absolute sense to me!

Lawson also discussed how to develop resilience by giving options on plans, to make things less concrete to avoid anxiety when plans were forced to change. He used the example of a school timetable that was prone to change and suggested that actually writing extra options onto the timetable would, to an extent, prepare for possible change in advance, and also gave the example of a girl going to a restaurant who might have to cope with a different table or waitress, and how preparation in advance might be a useful strategy to help the girl cope with issues that might arise. This sort of resilience is a necessary life skill for an autistic person to learn and to practice on a regular basis. Getting outdoors and getting exercise was also discussed as a way of building resilience, and how doing so might usefully be linked to interests connected to technology, such as geocaching, bikes with computer chips (I thought of my own love of looking at the stats on my Garmin after I’ve been for a run), or, in other cases having an animal such as a dog.

The way that more able adults often worry about things more was mentioned and how insight doesn’t actually change the anxiety problems associated with change, but can make it worse, not better. However, it seems that autistic brains gain more plasticity with age (unlike neurotypical ones). Lawson then discussed the processing of information and mentioned his own synaesthesia, which associates colours with moods. He stated that the mood of the audience was predominantly yellow, although I can’t remember what mood yellow represented, partly because the person with the sharp jumper was asking their friend what synaesthesia meant and the friend was googling it on an ipad, and partly because for me, yellow is E major, so everything in my head instantly went into four sharps!!!

The need for different sorts of cues (visual, auditory, kinaesthetic) for different people was discussed, as was motivation. Clubs and social motivations are unlikely to appeal to AS people, so movement and response has to be initiated in other ways. Lawson, like me, fails to see the problem with using ipads and technology in the classroom or in other situations. He suggested that the sort of anxiety triggered by demands placed on the autistic brain might be ameliorated by, for example, sending a text message to an AS person rather than asking them with spoken words. He cited one of his own family members saying that strategies that make the AS person believe that they’ve thought of what to do themselves are often the most successful.

Learning to be independent is often possible, but learning to be interdependent can be difficult with high levels of anxiety. Lawson also discussed the difficulties that AS adults might have when unable to communicate effectively with neighbours and so on because answering the door or telephone provokes too much anxiety. Information that isn’t conveyed by e-mail / text will often be missed. He concluded by mentioning mindfulness and asserting that it is very underrated as a tool for coping with some of the difficulties caused by being autistic.

***

Khalid Karim and his colleague Sarah Baines wisely started with a caution about the material in their presentation, which was focused on self-harm. Karim was an engaging speaker, and started by explaining some of the terminology often used to describe self-harm, including self-injury, suicidal ideation and so on. The question of what suicidal ideation actually means was discussed, and whether suicide attempts were part of the same thing. It was also noted that in the research the material available is predominantly concerned with genetics and statistics, but that there is almost nothing written about what can be done about self-harm in people with ASD.

After a brief discussion of how self-injurious behaviour (SIB) can become stereotyped in ASD (as opposed to “impulsive” in psychiatric illness), Karim went on to say how critical it was to ask not WHAT a patient was doing to self-harm, but WHY they were doing it. He also mentioned the recently increasing incidence of suicide in the general population, but that ASD data were very difficult to find and that suicide attempts are very much underreported. Autistic people are, apparently, more likely in general to have suicidal ideation, but with co-occurring depression the likelihood increases dramatically. Many ASD adults have suicidal ideation and have made suicide attempts.

The importance of discovering, in a clinical setting, what a SIB was trying to communicate was emphasised – language skills are often reduced when anxiety is high. SIBs can also be used, consciously, as a coping mechanism, and it’s important to try to understand whether the stressor is internal or external. SIBs can also be comforting and a relief from anxiety, even though they are difficult for an outsider to watch. An outside observer might instinctively try to stop such behaviour, but that might, in fact, have the reverse effect or cause the “patient” to redirect their behaviour to something even more harmful.

Various types of SIB were discussed, some of which were familiar to me from personal experience, and possible causes of SIB in autistic people were listed – for example repetitive, sensory, self stimulatory, poor sleep, communicative, anxiety, and so on. The management and impact of SIBs was also discussed.

Attention then turned to suicidal ideation, which is, apparently, really common in people with ASD – this is also borne out by my personal experience. Suicidal ideation doesn’t, however, always translate into suicide attempts, and, obviously, not every suicide attempt will translate into a completed suicide. It would seem that suicidal ideation peaks in the 20s, and precipitating factors for actual attempts vary. For those still in the school system there seems to be a reduction in suicidal ideation during school vacations. Depression, severe anxiety, and psychosis exacerbate the risks, as can feelings of exclusion – an autistic child in a mainstream school can often be “included, but excluded” so although they are physically present, they sometimes don’t make the same friendship connections with other children, even if they’re not actively bullied.

Karim also noted that the media has a role to play in self-harm. He observed that every time there is a programme on self-harm on the television the incidence of self-harm increases. He also noted that conventional “anger management” is a waste of time in these situations, and that poverty has a really significant role in increasing self-harm. Dangerous behaviours can also increase if they produce a desired response – the example was given of a kid climbing up a high building in order to get the fire brigade called because they liked fire engines. It was noted that understanding autism and mental health issues is complex and really hard work. A further example was given of a neurotypical carer assuming that a child’s self-harm was the result of the child’s mother having recently died, when, in fact, the issue was not the death of the mother but simply that the child was being bullied at school.

The issue of whether the “patient” even WANTED to be treated for their SIB was also addressed, and whether they even thought it was a problem. Maybe someone hitting themselves is a valid coping strategy, however distressing it might seem to an outsider. The need for flexibility in dealing with patients was discussed – an example was given where Karim had interviewed a child who was happy to be interviewed while upside down. It was also noted that sometimes the best strategy was to treat, say, sleep problems first, and that suicidal ideation in kids under the age of around 10 was often a way of expressing distress rather than really showing an understanding of death.

***

For the second session in Stream A, on psychosis, Tony Attwood was back at the microphone. He started by exploring the connection between ASD, schizophrenia, and psychosis, and went on to observe that schizophrenia was a common misdiagnosis in teenagers and adults with an ASD as the psychiatrists were often uncertain of the interpretation of phrases such as “hearing voices” and that imaginary friends and catatonia were often confused with signs of schizophrenia. Attwood also asserted that people with ASD were great at logic but less good at emotions.

Attwood discussed the connection between imaginary friends, people with ASD talking out loud while thinking in order to clarify thoughts (this reminded me of my own “scripting” behaviour), and the late development of internal dialogue in people with ASD. He also returned to the concept (mentioned earlier in the day) of AS people assuming what he termed “god mode”, in other words, compensating for lack of sporting and social abilities by developing an intellectual arrogance, especially if they were smart. He called this “Sherlock syndrome”.

Misdiagnosis of schizophrenia was further discussed. Many patients on chronic mental health wards were given a diagnosis of schizophrenia and then locked up for decades, when, in fact, they had ASD and had then suffered a breakdown.

The psychological reactions that many people with ASD experience as a result of being different were also listed, and it was noted that depression often starts young in people with ASD, who can seriously question the value of life (this latter tallies absolutely with my own experience). There was also an assertion that effusively social places such as Italy might be worse places for people with ASD than places such as Japan. The mimicry, acting, and chameleon-like behaviour of women and girls with ASD was mentioned as was the fact that such behaviour can lead to dissociative personality disorders and, in adulthood, substance abuse. Furthermore, those who hide in their houses in adulthood and become reclusive can apparently suffer from psychotic issues owing to sensory deprivation. It was also noted that people with ASD have high levels of paranoia and jump to conclusions, leading to diagnosis of prodromal signs of schizophrenia.

Catatonia was then discussed at length, as was isolation, and the withdrawal of many ASD people from the world because life was simply too difficult. The slowness of movement and difficulty initiating actions in catatonia was noted, as was the dopamine hypothesis and possible link with Parkinsonism. Attwood also asserted that catatonia was regressive.

***

The final plenary was also given by Tony Attwood, who was talking about catastrophising, particularly in regard to meltdowns in people with ASD. He started by outlining the rapid acceleration in intensity of emotions in people with ASD, describing the autistic brain as having an “on/off” switch rather than a neurotypical “dimmer” switch. He gave a brief introduction to the neurology of an ASD brain, positing that ASD amygdalae are larger and more overactive than those of neurotypicals. He suggested that this might be an adaption to aversive sensory experiences. The role of the frontal lobe in controlling “fight or flight” behaviour was also discussed as was the fact that in people with ASD the frontal lobe doesn’t receive information before a meltdown, so conscious control of emotions is not possible at that point. A meltdown might have been building for a while before it actually happens.

Attwood went on to discuss the potential use of fitbits (and presumably any other device that measures heart rate) as a good external indicator of a person’s anxiety levels. He also noted that saying “just relax” to a person in a heightened state of anxiety does not work, but that focusing on breathing or similar might.

He went on to discuss the mind of a filing cabinet, full of cognitive and social skills and proposed that one of the problems with intense emotions was that they effectively “locked” the filing cabinet, cutting off those skills and strategies and that even with instruction, many coping tools would not be available and that the best strategy was to remove triggers and to aim for calmness. He suggested that those dealing with meltdowns should behave “like a satnav” calmly redirecting and avoiding all analysis of what happened. He also suggested that getting rid of all need for sociability would be a good idea, and, if possible to engage the mind in some sort of special interest related activity – he gave the example of a child who was keen on numbers being encouraged to focus on some sort of counting activity. As a person who has huge meltdowns myself I did find much of this advice sensible and I might draw on it when I’m putting together the “how to” guide I’m eventually hoping to produce for those who might encounter me at such times.

As had been the case during the first session of the day, “depression attacks” were discussed. The advice for dealing with these “depression attacks”, which I thought sounded rather like what I’d call some sort of shutdown, was basically good.

Other tools and strategies were also discussed, particularly physical activity and the notion of using physical activity specifically for emotional release, although stimming, one of the most powerful tools for regulating emotions, was not mentioned. I’m very familiar with such strategies, although I’d not previously thought of “smashing up the recycling after school” as a tool for controlling emotions. Special interests and the value of animals were also discussed, with examples being given of parents being advised to get pet snakes and horses for their children! The role of medication and examples of maladaptive and adaptive strategies were also discussed as the session concluded.

***

The four sessions I didn’t attend because they were in different streams were on jealousy, speech and language therapy, self-esteem, and mindfulness. I’ve glanced briefly through the slides for the first three of these and read the article on mindfulness that was given in the conference pack. I have used mindfulness to deal with my own mental health issues over the last few years, with considerable success and I was pleased to note that the author of the article emphasised the circumstances under which it was not advisable to begin a mindfulness training programme – namely when there is upheaval in life or suffering from acute psychiatric conditions. I’d have been interested to attend any of these sessions, particularly the ones on self-esteem and mindfulness.

Compression

As I mentioned in Too Feely, my taste in clothes is driven largely by comfort and not by style. Those who know me will probably, if they try to imagine me standing in front of them in my normal attire, picture someone who nearly always wears loose elasticated jogging style trousers (shorts in summer), t-shirts (vest tops in summer), and a fleece and maybe a scarf when it’s cold. All of these clothes are usually selected for their loose comfort, their lack of restriction, and, often, their softness. I do occasionally dress up for dinners, concerts and parties, but only usually for short spells of time, and not on a daily basis.

So why am I sitting at my computer, typing this, wearing tight compression sportswear that’s several sizes too small, with an elasticated waist support fastened tightly around me on top of the already compressive clothing? And, more to the point, why am I not feeling sick or in pain or desperate to rip all my clothes off? Why did I CHOOSE to put these things on this morning?

The short answer is “I don’t know”. I haven’t a clue why, sometimes, I am desperate for the feeling of pressure against my body and I crave it and it calms me. Sometimes, when bashing myself against the sofa for half an hour doesn’t work, and drinking several glasses of wine doesn’t work, and thinking mindfully doesn’t work, and everything else I can think of doesn’t work, being compressed DOES work, and it works beautifully well. As I’m sitting here, wearing clothes that I usually wouldn’t go near on an ordinary day, I feel grounded and reassured by them. I feel the anxiety receding. I feel that the deep even pressure from my chest to my ankles is something beautiful, and, truth be told, if I could make it even firmer, even stronger, then I would (I’m limited as to just HOW tight the clothes can be by the need to be able to take them on and off)!

I’ve written before, in poem form, about the weighted blanket I bought in January and how much the pressure from that helps me and calms me. My use of compressive clothing as a calming mechanism since discovering I’m autistic predates my use of weighted items by several months. I wrote the following back in October 2016, in what essentially became a journal that was the predecessor to this blog:

29 October 2016

Weird probably autistic thing number whateverwe’reuptonow.

Mainly noting here for collating evidence / stuff to write about on future blog / in future book etc. And just because this is becoming a chronicle of experiences.

I always wear loose clothes. I know I do. I hate my clothes being tight. So I wear loose soft ones with all the labels cut out.

This afternoon I’ve been pretty weird. On my own in the flat (he is working) and also had a fairly tense week (water getting repaired), out yesterday, loads of stuff on the form (which is getting there – I hope to have it in the post on Monday), and a moderately stressful time.

So this afternoon was letting go time. I knew I felt very very anxious. Very not calm. Rocking and bashing myself on the sofa and stuff in the dark helped quite a lot. But not quite enough. It didn’t quite do what I needed.

I suddenly realised that what I really really wanted was pressure. To be wearing something tight. That was the signal every bit of my brain was getting from my body. I want pressure. Really really want pressure. The message was clear.

So it is Saturday evening and I am home alone wearing my tightest most compressive running trousers and a pair of compression calf sleeves. I don’t own any normal tight clothes, but I do have kit. So I am wearing the tightest kit I own.

And it feels beautiful and wonderful and I feel calm. And right. Sitting here in compression kit.

This is all really really odd.

But it is what is happening. And my promise to myself when this whole thing started was to do it properly. To listen to the signals I was getting from my body and my head. To work out what is needed. What helps. What is all this about.

If the strategies sometimes include wearing compression kit, then so be it. The calming effect is magical.

Back then I just used the smallest running kit I had lying around (and because I’d put on a bit of weight over the preceding year it was slightly too small and therefore helpful). Very soon afterwards, after a few more occasions where I’d hunted around in drawers and things to find other clothes that were fitted and even and a bit too small and decided that wearing compressive clothing from time to time really was going to help me, I deliberately went to my local sports store (as a runner I’m massively familiar with the place as I’m always obsessing about new kit and so on) and selected several items of clothing and various weightlifting things and so on and they’ve become part of my life now.

I did a bit of hunting around on the internet and found that liking compression from time to time is, indeed, not unknown among autistic people. I found tales of people going out with compressive sportswear under their clothes, mentions of corsetry being worn by autistic people, accounts of autistic kids wedging themselves under mattresses, and, of course, information about Temple Grandin’s squeeze machine which it seems she invented to get the sensory feeling of being hugged but without the need for human contact which some autistics are uncomfortable with.

I’m not uncomfortable being hugged by other humans – far from it, although I do have occasional times when I prefer not to be hugged (they’re quite rare), and I’m absolutely not a great fan of being tickled or very lightly touched or being breathed on or similar. But other humans are not always available, and sometimes I do need to be both alone and have that reassuring feeling of EVEN pressure against me (the evenness is very important – I absolutely don’t like straps or inconsistent pressure or anything that feels like it’s digging into my skin).

The research I’ve managed to do so far suggests that, just like bashing myself against things or hitting parts of my body with my fists or lying under a weighted blanket, that this need for firm consistent pressure is to do with balancing the proprioceptive system – the sense that feeds back to the brain precisely where the body is in space, that tells you where your legs are under a desk even when you can’t actually see them. It seems that, like all the other sensory systems (see Too Bright and Too Loud) autistic people’s proprioceptive systems can be a bit skewed and that seeking pressure (or indeed, being unable to tolerate it) is not uncommon.

And so, wearing compressive clothing when I feel the need has become part of my normal life over the last six months. And, as I hunted around last October for those few items of “too small” clothing I found there were a few. And all my life I’ve had occasional times when I’ve worn them, for, it seems no reason at all. I’ve just got up from time to time and thought I’d wear the tight things today.

Then, a couple of days later, sitting wearing the newly acquired sportswear and a waist support belt, I was suddenly hit with a really strong memory – a memory triggered not by conscious remembering, but by feeling, in the same way that starting to flap my hands had triggered this sort of “feeling memory”. I wrote it up in the journal:

31 October 2016

As I calmed down and felt the pressure from the belt I remembered having a big wide belt when I was a teenager. It was the 1980s so belts were big and wide.

And I remembered sitting at my desk in my bedroom as a teenager wearing some too small shorts and the big wide belt done up very very tight and pushing my chair right up to my desk.

A memory completely forgotten until today.

That was one of the ways I coped back then. 30 years ago. And I wouldn’t have had the first clue why.

This continues to be an extraordinary and revealing time.

I know this memory must have come from some time in my early teens because I can remember the position of my desk and the décor in my bedroom. I also know that I’d had no instruction to wear a wide belt done up tightly for any reason (probably, had anyone known I was doing it they’d have tried to discourage rather than encourage it anyway, so I expect I concealed it, probably afraid I’d get into trouble), and I had no access to anything like the internet or any other influence. But the memory that was triggered last October has reminded me of similar times that go right through my life, through student days, through most of my adult life, right up to the present moment.

And so I shall continue to wear what I am wearing right now until either I need to go out or until I receive the signal from my body (which can often be sudden and dramatic) that says NO MORE! Interestingly, the feeling of needing pressure of this intensity can vanish almost instantly, and when it does, I listen. I’m working out ways of making the system as flexible as possible and of doing what is most needed when it’s most needed, and I’m starting to observe how it all works and still trying to understand what it’s all about!