Wasting Energy

I pressed my back into the corner of the cold wall behind me, as hard as I could, hard enough to distract me from the need to twirl or flick my fingers or flap my hands, hard enough to counterbalance the brightness of the light emanating from the interior of the van parked in front of me, next to my stricken car. I’d changed out of my sunglasses into a pair of ordinary specs, because I knew that wearing sunglasses on a December evening would attract questions I didn’t want to have to answer.

My internal dialogue was on a repetitive loop: “Mask like fuck, mask like fuck, normal, normal, normal, mask like fuck, mask like fuck, normal, normal, normal…”

“How long have you lived in your current place then?” said the breakdown man.

I felt my spouse, who was standing beside me, tense. I knew the thought process that would be going through his head: “Why does he want to know? He’s going to come and destroy our lives isn’t he? How does knowing when we last moved house help with mending the car?”

I knew that dealing with this sort of inane chatter was my job in these circumstances. My spouse, who had managed, half an hour earlier, to make the telephone call to the breakdown services while I sat on the floor in the dark rocking back and forth in a total panic, would simply be unable to manage such questions, so it was down to me.

“About 4 years,” I said, using one of the learnt scripts I keep in my head for such occasions. “It’s handy for the shops,” I added, hoping this was good small talk. It seemed to be OK.

Further questions followed. I reminded myself that the man was probably just trying to pass the time, and that he probably didn’t intend this to be some sort of cross-examination under torture. I did the best I could to smile and chat, my brain feeling like it was working so hard it might actually explode, my body tense and stressed from trying to keep still, my back pressed hard against the cold wall for a bit of relief.

The computer sitting on the car engine finished its diagnostic work. The man started to show me graphs, figures, numbers, and to talk about the state of the car battery (totally knackered). I relaxed a little. This was relevant, and seeing graphs was calming and made sense. There was now a purpose to the conversation.

The breakdown man said he had a battery on the van he could fit there and then. Since it was 2 days before Christmas, late in the evening, and we were quite a few miles away from home, this was a good outcome. Battery specifications and prices were discussed, the battery was fitted, and a further few “social” remarks were made. I didn’t challenge his (incorrect) assumption that we’d been Christmas shopping, although I did remember to thank him and to convey appropriate seasonal wishes I think.

By the time I got home my speech had failed and I was utterly exhausted.

***

Since I discovered and disclosed that I’m autistic I’ve attempted consciously to conceal it, and to mask my autistic traits, on only a handful of occasions, such as the one above. That night I was low on spoons (energy), having already been out in the world for a few hours. We didn’t know what sort of breakdown repair person might show up, or whether they’d know anything about autism. We didn’t know what prejudices they might have (over the years we’ve found motoring to be a problematic area of life at times – my spouse doesn’t drive and the car is mine but because he looks like a man and I look like a woman (we’re both nonbinary) frustrating assumptions have often been made), and we didn’t have energy to educate or to explain – we just wanted to get home with a fixed car.

So the decision was made to mask, to act as “normal” as possible. Changing my glasses, removing the wristband I wear that says “Autistic” on it, remembering to smile and make some sort of attempt at eye contact if necessary, putting my tired brain into overdrive in order to interact and maintain speech, frantically searching through my mental library for scripts, remembering not to tell my entire life story or talk too much, no jumping up and down, no pacing around, no swaying back and forth or pulling at my hair, and definitely no flapping hands.

I managed it. But only just. Since going into burnout a couple of years ago (I’ll discuss burnout elsewhere), my ability to act non-autistically has been pretty poor and I’ve only been able to do so for very short periods of time without getting ill or having some sort of meltdown or shutdown. The whole carefully constructed facade that has characterised most of my life in the outside world for the last 4 decades has simply crumbled and fallen to pieces as I’ve run out of energy to maintain it. Some skills I’d previously learnt have become patchy or disappeared completely, my sensory system has gone berserk, and the amount of care I need has increased significantly.

Of course, everybody, whatever their neurology, masks to some extent. People “put on a brave face” when they have to deal with difficult situations, they dress up in uncomfortable clothes to go to formal occasions and job interviews, they walk into work on a Monday morning having had terrible weekends and sleepless nights and when asked “How are you?” respond with “Very well, thank you.” even if they feel absolutely awful and want to kick the cheery Monday morning questioner in a painful place. People with mental illnesses, chronic pain conditions, and even folk who are simply having a difficult time will experience an even greater need to put on some sort of a “public persona” at times.

So, what is so different about autistic masking? Well, I haven’t yet done enough study or research to give a definitive answer (something I’d ultimately like to do is really investigate such questions – since I discovered, nearly two years ago, that well over 90% of people on the planet experience the world differently from how I do, I’d really like to find out about their experiences, but I haven’t had the energy so far). All I can do at this point is speculate. I think, perhaps, that much of the difference is to do with a matter of extent and from the number of situations in which a person feels they need to mask in order to fit in, not to cause a fuss, or to function in the world.

Back when I was well enough to work, I “acted” at job interviews. I suspect everyone does that. But what I’d one day like to explore is the point at which most people cease to act, start to feel like they’re in some sort of “comfort zone” (a concept I’d also like to explore sometime), and when they are basically able to “let their hair down”, be themselves, and have little or no anxiety (obviously, for those who have an anxiety disorder, this will be different). From what I’ve observed of people’s behaviour (unless the whole world is performing an elaborate act and everything is fake), I suspect that many people feel free to be themselves when out having a few drinks with their friends, playing sport, at a concert, going to pick up a few bits of shopping at the supermarket, watching TV with their families, or at home with a partner. These things might be more or less enjoyable, but most folk seem to be reasonably relaxed when I’ve seen them in these situations. I am not, and, perversely, I’m probably no more likely to be stressed in a job interview than I am having a few drinks down the pub because my stress levels are so high for so much of the time that the differentials between different situations are rather small. If you’ve ever encountered me in any of these situations and I appeared relaxed, it’s because I was masking.

The situations when I can essentially be “me” occur only when there is a locked door between me and the rest of the world (and even then, there is a fear the safety might be breached). The only other person who has ever seen the full real me is my spouse, although my best friend of many decades has been close. At all other times, I am on high alert, I am stressed, I am anxious, I am acting, to a greater or lesser extent. Alcohol helps me with the act, although it’s obviously not an ideal strategy. Some autistic people, especially late diagnosed ones who have been masking to everybody for decades, cannot even be themselves with their spouses.

I find it difficult to explain this matter of extent to people – I often post things on my facebook and am greeted with a chorus of “Oh, don’t worry about that, it’s absolutely normal, everybody gets…” which I suspect is meant comfortingly, but just makes me feel very invalidated and disbelieved. Maybe my communication style is misunderstood? Maybe I’m not adequately able to explain that it’s not a question of, for example, liking or disliking supermarkets and shopping, but that the energy required to cope with the noise and the light and the people and so on is such that even a short trip out can sometimes mean I melt down at the checkout to such an extent that I have to bite my own arm and bruise it (see the picture at the top of this post, taken earlier today) in order to cope.

Of course, by the time I’m melting down at the checkout, the mask has broken. In the past I’ve been accused of being drunk, been threatened with arrest, and often simply run away from situations I couldn’t cope with. One of the reasons autistic people DO mask and hide their unconventional ways is precisely to avoid accusations of drunkenness or getting arrested or even worse. Masking can sometimes be useful and even essential. That’s something I hope to discuss in the future.

Nowadays with more knowledge and less masking I can usually manage to buy a small amount of shopping by using strategies such as wearing sunglasses and ear defenders and allowing myself to stim (more on that another time). I’m fortunate in that my circumstances generally allow me to be openly autistic and I have no problem with being so. The result is that I’m starting to learn to conserve energy where I can and to use the limited resources I do have to try to improve my quality of life, which has, over the last few decades, generally been declining rather rapidly.

I have wasted a huge amount of energy over the decades trying to live my life in order to fulfil societal expectations. Sitting still, making eye contact, sitting in a chair with my feet on the floor, wearing various sorts of clothing, speaking when it is making me feel sick, dealing with pain from lights and sounds and textures, consciously trying to work out when to talk and practising what to say, trying to maintain employment in overloading environments, smiling when it is really difficult, trying to pick out one conversation when others are happening, forcing myself to go to social events, and so on. Even the simple experiment I did when I was first investigating the “autism hypothesis” as I called it, gave an indication of just how MUCH energy masking can use.

Masking is exhausting. Utterly utterly draining. I’ve had people say to me many times over the years “But WHY are you so tired? What have you been doing?” and I’ve been unable to work it out. Even in my 20s I used to collapse with exhaustion on a regular basis. The brutal truth is that for an autistic person simply EXISTING in the world is knackering – never mind trying to hold down a job or have any sort of social life. And many of the standard recommendations for “improving mental health” (such as seeing more people in real life, spending less time on the internet, sitting still and being “calm”) simply make matters worse – solitude, rest, and stimming are much more useful tools. We need a LOT of downtime in order to recover from what, for most folk, are the ordinary things of life.

And this is at the core of the problem of masking. The perpetual acting, the perpetual stress levels on a par with what most folk would feel when at a job interview, the huge physical effort of sitting still and coping with sensory overload, and the conscious process of trying to work out how to interact with other human beings eventually takes its toll. In the short term it can lead to a meltdown (as it did with me in the supermarket the other day). In the long term it can destroy mental health and lead to autistic burnout.

Many autistics mask for years, putting in huge amounts of work to try to fit in to the world. Those of us who were diagnosed very late avoided some of the therapies that essentially force autistics to mask by using punishment when they exhibit autistic behaviours, although we were often taught to “behave properly” and the cane in the corner of the headmaster’s study was a constant threat throughout our childhoods. Some autistics become so good at masking that when they present for diagnosis they are turned away or misdiagnosed and when they tell people they are autistic they are met with disbelief and invalidation.

I’m probably one of very few late diagnosed autistics who hasn’t been told “But you don’t look autistic!” or disbelieved (in fact, when I published The Discovery most people simply said “Well, of course you’re autistic – you really didn’t know?”). My mask was evidently somewhat transparent as far as visible traits were concerned and it turned out that even with the huge effort I was making I didn’t actually succeed in fooling many people and those who knew me and knew anything much about autism (which I didn’t) weren’t surprised at all. I’d also long since accepted that I was one of society’s weirdos and grown comfortable with that (in fact, I still feel very strongly that I used to be rather special and interesting but now I’ve actually discovered I’m nothing more than a common or garden autistic)!

I’m also now beginning to realise that a huge part of MY masking was not just trying to “appear normal” but was actually trying to lead a life that was way beyond my capabilities. “Taking off the mask” for me is not just about openly stimming, wearing dark glasses and ear defenders, and allowing myself to look noticeably different from other people (I’ve actually found that bit pretty easy). It’s much more significantly for me about learning to rest, learning to pace myself, working out new ambitions, new goals, ones that might, once I’ve recovered from this burnout as far as I’m ever going to, actually be possible and within my capabilities. In short, working out how to spend my remaining time on the planet living a life that isn’t going to damage my mental health still further or cause any more huge burnouts.

That’s still very much a work in progress!

A Big Kid!

A few days after the appointment outlined in Still Complicated my spouse received an e-mail to say that somebody had been found who was willing to see me. An appointment was made. I wasn’t sure whether it would lead anywhere, and I wasn’t quite sure how to respond to the situation, so I went for messaging a few of my friends, in what I guessed might be a gently humorous way, explaining what the next stage was:

In a twist to the “autistic adults don’t exist” scenario, instead of pretending I don’t exist (since I evidently do), or that I’m not autistic (since I evidently am), they’re now pretending I’m not an adult instead (which is probably closer to the truth anyway) and I’m going to see a child psychiatrist!

The appointment was set for the beginning of November, and since we were, by now, starting to figure that the only way to convince the medics of the “ADHD hypothesis” (although, unlike with autism, which had been a sudden thing, awareness of my ADHD traits had developed over many months and it was more of a self-diagnosis than a hypothesis by this stage) was to do the research and present the evidence, we set about doing just that. By the time we got to the appointment we were even more convinced, though, as usual, trying to translate this knowledge into spoken words to people who need more than “Well, y’know…” (because they can’t see the pictures in my mind, which I often forget) was going to be something of a challenge.

I liked the child shrink from the off. She didn’t treat me as though I was five years old, which was a relief – I’m not the most mature fortysomething, but being spoken to like I’m a kid drives me bonkers. She asked if it was OK for her to sit where she hoped to sit. She was wearing a calming black outfit that didn’t distract my eyes, she spoke calmly and clearly. And the stuff she asked was clear and generally stuck to things that made sense and were in a logical order. When she sensed I was getting overheated on something she changed direction and diffused it, and the result was that I managed to stay in the room for the whole appointment. She’d also clearly read a lot of what we’d sent, so had quite a lot of background information to start with. And she asked before shaking my hand!

As in the previous post, I’m not going to go into details right now because my head is still processing, and I’m trying to make the best use of the available energy I currently have. Those of you who read October will know that I’m still recovering from the energy running out, and that the fact that I’ve now returned to being able to blog again is a significant shift from how things have been for some while. I AM recovering, and we seem to have stopped my mental health taking a significant downward slide again, but I’m trying to take things gently and getting used to things being different, yet again, from how they were until recently.

I’d been massively stressed when we arrived at the appointment and although the appointment eventually went well, my stress levels remained high. My regular psychiatrist was also present, and the interactions with four people in the room (two psychiatrists, my spouse, me) were sometimes complicated and tiring. Fortunately my spouse was there to pick up on the bits I missed or the bits I couldn’t manage, and at some point towards the end of the appointment (although I almost missed the details because I was having to concentrate so hard), the child psychiatrist confirmed that had I been younger I’d have been diagnosed with ADHD as a child. The flippant suggestion in my earlier blog post had turned out not to be so flippant after all!!! And, on top of that, having discussed how my ADHD traits impact on my life NOW, I was given an adult diagnosis too.

Then things felt like they started to move rather fast. Health questions happened, medication was discussed, and my regular psychiatrist left the room and returned with a prescription! There was talk about it being something I might like to think about for a bit, and it being a big decision and so on. My spouse and I had done the research and had the appropriate discussions and considerations weeks before. We already knew what the answer would be.

And so, on 1st November 2017, at around 10am, I was diagnosed with ADHD, another diagnosis that I would have received decades ago had circumstances been different. The time and date get added to 20th February 2017, at around 1.30pm (when I received my autism diagnosis) as a significant point in my life.

It felt a bit odd. And several days later I said to my husband how strange it was that I was quite comfortable going round telling the world that I’m autistic and that felt pretty much normal to me, but that it felt a bit odd saying that I had ADHD! However, a week and a half later (probably almost two weeks by the time I manage to publish this post) it’s starting to feel right and OK and fine and much less odd. I already knew I did have ADHD, but the official confirmation, like with autism, made a big difference to me.

And I now have some medication that might help to make a bit of my life a bit easier. There’ll be a blog post to write about medication at some point I imagine and it’s still really early days on “the stuff” as I’ve been calling it, but so far signs are very promising. I’ve only been taking it just over a week and we’re still analyzing effects and there will be discussions in the future of dosages and so on – yet more things for my mind to process, yet more things to learn and observe and so on.

And it’s another beginning of another thing, a new thing. In true autistic style I’ve become “interested” in ADHD (“interested” in the sense of “when I get interested in something I get VERY interested” interested) and you might notice this blog wandering into areas of neurodivergence that are not exclusively autism-based from time to time.

Still so much to learn. Still so much to discover. Still so much to try and interpret and explain.

And the medication? Is methylphenidate. Yes, the stuff that’s in Ritalin!!! I’m not actually on Ritalin itself, but a slow release version called Concerta. However, the throwaway remark from last year now sounds rather different because I HAVE (almost) “ended up as one of those ‘Ritalin kids’”!!!

I’m somewhat large and I’ve had rather a lot of birthdays, admittedly, but I was diagnosed by a child psychiatrist!

Maybe I’m just a big kid after all!

Still Complicated

After my autism diagnosis I was fortunate enough to be given two follow up appointments with the assessor, mainly, I think, to discuss how I felt about being diagnosed autistic once I’d had a little time to process it, and also to discuss the report and finalise paperwork and so on.

The first of those appointments was in April 2017, and I know that by that stage I’d already learnt quite a lot more than I’d known in February. Having a formal diagnosis finally gave me the confidence I needed to start interacting with other autistic people, and I was starting to discover that some of these people were more like me and some less like me. I slowly started to try to work out where I fitted into the autistic community and what role, if any, I might play in it in the future.

There were things that were obvious from the off. I’m not a computers sort of autistic, nor a gamer, nor do I seek particular solace in nature. Neither am I a hyperempath, nor particularly introverted, nor what most people would regard as shy! I can sometimes be quite extroverted, I have to work hard to try to interpret the feelings of others so as to try not to cause offence, I like engines and machines and cars and trucks and planes (and yes, trains too), but even syncing my phone to the computer or trying to do anything new with this blog can reduce me to tears.

But there were other things too. And, as we started to unpick all the features of me that were clearly related to me being autistic, we started to notice that there were quite a few things that weren’t explained by autism. And as I read more about neurodiversity in general and started to interact with people who were neurodivergent in many different ways and not necessarily autistic, something else started to emerge as a possible contender for consideration.

It was as though somebody had laid a whole load of objects on a table, each object representing a trait (this trait might be a “skill” or it might be a “difficulty”). As I’ve steadily been diagnosed with different conditions over the decades, these objects have been removed from the table and put into a bag labelled with the name of that diagnosis. When I was diagnosed with anxiety and depression a couple of decades back a few objects were removed from the table, put into a bag, and taken off to be given an antidepressant pill and some CBT. But there were still rather a lot of things there. The bipolar disorder diagnosis nearly a decade ago removed quite a lot more objects from the table and quite a lot more of my life was explained, but again there were still an awful lot of my “eccentric” traits left behind.

Then autism arrived. And a HUGE number of objects were put into a brand new bag with “autism” written on it. I took the bag and started to work through the contents and to try to deal with them as appropriate (e.g. there was an object that told me fluorescent lights made me ill, so I wore sunglasses and I now ask people to turn off lights when I can). Learning to understand all these traits, sticking them all together in the “autism bag” was revelatory and changed my life massively.

However, there were still things on the table. And once the autism traits had all been removed, it was clear that there was another outstanding diagnosis that would explain quite a lot more of my behaviour as both a child and during adulthood. It seemed unlikely that I really was a highly spontaneous autistic who just randomly did things out of routine sometimes or that the times when I missed details and struggled with mundane repetitive tasks were down to autism – and these traits were having a significant and often detrimental effect on my life. Chatting to other autistics online it became obvious that the mixture of traits I had were the same as those who were identified or diagnosed as being autistic but ALSO having ADHD.

I mentioned this to the autism assessor at my first follow up in April. She said that she was unable to diagnose ADHD because it fell outside her remit. She was absolutely totally certain that ADHD was not an alternative to the autism diagnosis because she was so totally certain that I was autistic, but she didn’t rule out ADHD as an additional condition that would be worth exploring elsewhere.

So we made an appointment with my GP, which, owing to terribly long waiting lists and difficulty booking appointments, entailed a 6-week wait. We used the precious GP appointment to briefly outline the results of the autism assessment and to broach the idea of ADHD. My GP referred us back to the mental health services, who were the people who were the ones to do ADHD assessments. And we settled down to wait, again.

Forms arrived a month or so later. I was away at the time so we didn’t manage to complete them straight away, however, eventually, in September, we completed Formageddon Round 3 – another set of questionnaires for me, a set for my spouse, and a set for my mother. I might write the process up in more detail at some point, but not today.

And so, at the start of October, I was given an appointment at the mental health services for what we believed would be a relatively straightforward ADHD assessment.

It turned out a bit differently from what we expected. I’m not going to go into details right now, because my head is still doing a lot of processing, but suffice to say, things changed from what we were expecting (the time and personnel of the appointment were both changed just beforehand). It turned out that I was seeing my old psychiatrist from many years back, and, of course (though I already knew this) it was in the mental health centre I’d left many years ago and had been to rather a lot at a not very happy time of my life.

The triggering effect of being back in the place, with the person, coupled with the fact that I was, on this occasion, again deemed “too complicated” (warning for picture of self-injury if you click the link), was nearly disastrous. This time, however, unlike the occasion in November 2016, my spouse spotted the signs and suggested I take a break. I spent most of the appointment outside, rocking on the pavement and communing with a pot plant with a small white flower.

When I went back in for the last few minutes of the appointment my spouse had clearly explained a lot, and my autism report, which my GP had sent with the referral, had finally been read. It had also become obvious that there was something of a vacuum as far as finding anybody who understood both neurodiversity and mental health issues, and the ways in which they interacted, well enough to give me (an autistic person with bipolar disorder) an ADHD assessment. My psychiatrist, however, did think that there was someone who could be asked to help and that it was worth a try.

I’m not sure I was wildly optimistic at this stage. It seemed like the process of finding people who could actually work out what was going on in my head and help me put the objects from the table into bags and then deal with the contents of those bags, was just an uphill struggle. I pondered whether to just give up and go home and drink stronger drink, but in the end I was curious enough to wait to see what happened next.

Flippant Suggestion

Very early on in the process of discovering I was autistic, sometime in the autumn of 2016, my husband and I had a brief and frivolous discussion. We spent a short while pondering what explanations would have been proposed for my behaviour as a child if I’d grown up in a different decade?

My behaviour at primary school was clearly somewhat different from that of most kids. I spent a lot of time on report, I got into trouble a lot, and I found most of the experience of going to school as a young child incredibly difficult. I evidently had some academic ability and I was a prolific reader, and I sang and played recorders and clarinet in school concerts, but I fell a long way short when it came to actually completing written work, even maths, which I struggled at until my mid-teens (this will surprise people who know me today), and my behaviour was way off what was expected.

At the time, the school did what they could, as I described in Head’s Office, and tried to find out why I wasn’t behaving “correctly” or achieving what I should have been in my written work. However, because it was the 1970s and they were primary school teachers in an ordinary primary school, no conclusion was ever reached, and I just eventually muddled through somehow, using my learning ability to adapt as best I could and to try to work out what I should actually do.

So, we knew what had happened in my real life, in the life where I was a primary school student in the 1970s. And, as it became obvious that I was autistic and that I had shown a large number of autistic traits right from being a baby, and as we discovered that my nursery teacher had remarked on my behaviour when I was 3, and my primary teacher had done likewise when I was 4, we concluded that it was likely I would have been given an autism diagnosis as a young child had I been 40 years younger. This was eventually confirmed by the person who did my autism assessment – she was clear that there was enough information about the early part of my life that I would, in the present day, have been diagnosed at around 4 years old, as I described in Circles.

However, that left quite a large gap. 40 years is a long time. Was there any sort of intermediate stage? What would have been the analysis of my school behaviour if I’d been, say 20 years younger? A halfway point between the 1970s and the 2010s? What would have happened to me if I’d been a child in the 1990s? Obviously, things would have moved on somewhat from the 1970s. I would still have been very unlikely to be identified as autistic, but we speculated, very briefly and slightly flippantly, what MIGHT have happened if I’d shown the same behavioural traits that I did in the 1970s but viewed through the eyes of 1990s adults.

We were, of course, adults ourselves in the 1990s, though mainly students and with no dealings with small children of any description. I eventually became a schoolteacher, but that was towards the end of the decade and I was a secondary teacher – I only gained limited experience (from occasional supply work) of primary age children and how people reacted to them in the early 2000s. But we did watch the news. We did follow current affairs. And, having the sort of memory that we both have, we both clearly remember stories about the behaviour of small children and the rise of a particular diagnosis during the 1990s.

“I might have ended up as one of those ‘Ritalin kids,’” I quipped to my husband! We both laughed! “Yes, me too!” he responded. We laughed again. The throwaway remark didn’t spark any further discussion. We were only bantering, wondering, throwing ideas around, and eventually we carried on with the serious business of gathering information for an autism assessment.

I didn’t think about that conversation again for a long time. The question of what would have happened to me as a child in the 1990s was just a little game of “What If?” and since we knew what HAD happened in the 1970s and we were now certain that we had found that my being autistic was the reason for my behaviour as a child, we had no reason to pursue anything else further. We had the answer – I was autistic and we were absolutely focused on getting me the formal autism diagnosis that I so much needed, and, at the time I spent most of my life buried in autism books and blogs – like a true autistic with a new shiny interest I really didn’t care much to think about anything else in life except autism!

I was also going through that really “heady” early phase of discovery, where, after decades, I was suddenly discovering so many reasons for so many things that had always been part of my life. I was reading whole books in one sitting, taking in vast amounts of information, and learning as much as I could about autism and being autistic and the ways in which being autistic influenced my life. I was still in that initial state of shock, excitement, relief, and so on and my mind was going at a million miles an hour.

It wasn’t until I finally received my autism diagnosis at the end of February 2017 that we finally stopped gathering information about my autistic traits and I started to relax a bit and gained the confidence to engage properly with the online autistic community and to start to learn about the whole area of neurodiversity and how it impacted on my life. Getting my diagnosis freed me to start looking outwards, and forwards, rather than backwards and inwards. I also started trying to rebuild my life and to try to find solutions for some of the difficulties that I was still experiencing.

And, in the usual way, I did so by research and by reading and by learning.

There was still a lot to learn!

Sheet Problems

Many of our sheets are
Still missing after the move
Many are old
And wearing out…

So I bought a new one.

I washed it
As I do with all new things
Because new things
Never feel right
Or smell right
Unless they have been
Washed in the usual stuff

(My mother once washed
My bedding
In a different sort
Of powder
When I was a child
And I couldn’t sleep
Because it smelled
So wrong).

I put the new sheet
Onto our bed
Yesterday.
I knew it was wrong
The instant I got into bed…

Scratch scratch scratch.

Scratch scratch scratch.

Scratch scratch scratch.

I feel now
As though I have spent the night
Sleeping on sandpaper.
I feel as though my skin
Must be red raw
From the experience.

I know it isn’t,
Logically.
And, as always,
Any outside observer
Would simply tell me
They couldn’t see anything
And not understand
The problem.

(My spouse has had
Years of me complaining
About wrinkles
In the sheets
And things not feeling
“Right”
While he is unable
To feel what is wrong).

So I am about to get up
Much earlier than usual
Because I cannot lie
On this sandpaper bed
Any longer.

And I will be changing the sheet
Again.
More energy used.
More washing.
Another failed thing
To add to the detritus
In our flat
Another waste of money
I don’t have.
Something else
I will struggle to throw away
Because I will feel sorry for it
And guilty that I didn’t love it.

Maybe the animals will enjoy it as bedding?

But, as my spouse said to me
At least we now know
There’s a reason that I
Complain about the sheets.

So that’s something.

But I still need a new sheet.

Which means shopping
In shops
Which is hard.
And the sheets are all in packets
So I can’t feel them first.

Or buying online
Where I also have to guess
Whether the sheet
Will be a good one.

(And, of course,
The good ones are more likely
To be the expensive ones
Which I can’t afford).

You’d think
That buying a new sheet
Would be something
Quite simple to do.

Not in my world it isn’t!

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!

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!