Done with Dieting

No, that’s it really.

Of course I’m not talking about the literal meaning of diet, which is just what you happen to eat. I mean the kind of diet where you limit the amount or types of food you eat, to achieve either weight loss or health gain (which usually implies weight loss anyway).

I was chubby as a child, and I first went to WeightWatchers when I was 11 (entirely my own choice, I must add). It worked well for a while, so when I was 16 I was a size 10. After that my weight gradually increased, and I tried lots of different diets, most of which worked – for a while – but as is often the way, my weight kept creeping (or bounding) upwards, to a level generally felt by society and the medical profession as undesirable.

I’m 50 now. I have therefore been on a diet of one sort or another for 39 years. 39 years of trying, with every ounce of willpower I have, to deny myself food, and when that willpower failed, of feeling guilty and self-critical for eating whatever food is considered ‘bad’. 39 years of trying different ways of eating, all backed up by research that looks reasonable at first glance, but is eventually debunked. And 39 years of thinking I’m lazy or greedy or lacking in self-discipline because I can’t cope with feeling hungry or depriving myself.

And I am done with dieting. I’ve decided to take my chances with weight gain because I cannot – CANNOT – face denying myself food anymore. I cannot continue to feel bad about how I look, how much I weigh, or what I eat. It’s just not worth it. I am not a conventionally beautiful woman – I never have been, regardless of what size I was at the time. So what? I will wear mad clothes and sparkly makeup and dye my hair blue if I feel like it. I honestly don’t think anyone will care. And if they do? So what?

Your mileage may vary, obviously. If you wish to diet, can diet, or are dieting with either success or failure, good for you. Whatever size, shape, or weight you are, whatever you choose to eat or not, I will support your right to make your own choices. It’s not my business to tell you what to do.

I will buy bigger clothes, and er, no, that’s about it. When it becomes necessary, I will buy bigger clothes. I will eat whatever the hell I want to eat, whenever the hell I want to eat it, and whatever happens to my weight or physical health (which might well be nothing bad at all), my mental health and love of life will improve immensely. I am done done done with dieting. And God help anyone who tries to tell me otherwise.

Yet Another Diagnosis (or two)

Two weeks ago, I was diagnosed with fibromyalgia.

There are many different symptoms of fibromyalgia, but the ones that sent me to the doctor in the first place are widespread chronic pain, and chronic fatigue. I gradually became more and more run down and exhausted until I had to take some time off work, and during that time I was sent to a specialist, who was able to diagnose me. It’s a diagnosis of exclusion, but I’d been going to the doctor for various other tests for several months, and everything else was ruled out by this time.

To summarise what the specialist said to me, this is a complicated disorder/disease, with no cure, and no effective medical treatment – at least not in the Aneurin Bevan Health Board area, where any medical interventions that are used elsewhere in the world are strongly discouraged. It can be managed, possibly, by living an incredibly healthy and moderate lifestyle, but sometimes even that doesn’t work.

Fibromyalgia is not a terminal or degenerative condition, so I’m very lucky in that respect. I also appear to have a very mild case – a lot of people who have fibromyalgia have serious mobility issues, and some are unable to work, certainly at a full time job. After two weeks of doing absolutely nothing except going to medical appointments, my energy levels have picked up, I’m working from home, and will be going back to work in the office next week.

No-one really knows what causes it, although there are as many theories as you’d expect. The most recent reputable theories I’ve found, which align with my experiences, are that the brain’s management of pain signals goes wrong, and that some people have a genetic predisposition to this which can be triggered by certain events, such as extreme stress or medical procedures.

And that’s it. I’m never going to fully recover from this. It’s likely that I will get better than I am now, but the constant aches and pains all over my body will never go away completely. The fatigue will never go away completely. I will always be at the very least a bit more tired than I feel I ‘should’ be, and in some amount of pain or discomfort. It’s also likely that I’ll have periods of time where I’m considerably worse than I am now. At my worst just recently, I could not keep awake for a whole day, I was so tired I was dizzy a lot of the time, I wasn’t fit to drive some of the time, I couldn’t lift my arms up above my shoulders because they hurt so much and felt so weak, and I had crashing headaches for hours several times a week, some of which did not respond to even the strongest over-the-counter painkillers.

I’m having a lot of trouble getting my head around this. I have some periods of time, sometimes whole days, sometimes a few hours, where I feel great – I’ve got my mojo back, I’m happy and content, I’m enjoying life as much as I’ve ever done. But I have other periods of time when I feel no motivation to do anything much, and sometimes I just want to lie down in a dark quiet room.

Experience tells me that at least part of this is the time of year, and that I’ll recover my mood to a large extent in the near future. And I am very aware of, and focussed on, the many, many wonderful things in my life. But I’m finding it much harder to bounce back from this than I would have expected.

Oh the other diagnosis? Totally unrelated, severe arthritis in both feet. Makes it hard to walk sometimes. I’m taking glucosamine, which I think is helping, but the only other option is steroid injections, which I’m told work for 6-9 months and are extremely painful at the time.

So far though, in both cases, no-one has suggested that I lose weight or give up chocolate. So even in my lowest moments, there’s a touch of a silverfoil lining…

Mental Health

Over the last couple of weeks, I’ve been curating my blog, which basically means removing some random posts reviewing various diets, and restaurants in Salisbury, from when I worked there a good few years ago.

In the course of that process, I’ve been back to the start of my blog and read the posts from the beginning, in 2011. At the time, blogging was reasonably new (well new to me!), so I started with some random posts about whatever was going on in my life at the time. In October 2011 I hit a nasty bout of depression, and I found it impossible to talk to my loved ones about it face to face, so I decided to blog about my experiences instead. Since then, I’ve found writing blog posts about my mental health to be a useful tool, both for clarifying my thoughts and recording how I’m doing.

I’ve suffered from depression since I was 14. It hasn’t been constant but I have had many fairly serious bouts of depression, most of them requiring medication – I was prescribed my first set of antidepressants at the age of 16. I’ve had three children, and had post-natal depression after each of the births, and had several other, bouts? epsiodes? in between times, to the extent that I’ve actually lost count.

Reading back over my blog, I found that I started on antidepressants again in October 2011, tried and failed to stop taking them in 2013, and eventually came off them early in 2016. In 2015 we had begun to realise that our youngest son might possibly be autistic – and in 2016 it started to dawn on myself and The Husband that both of us and our other two children were also autistic.

Getting my formal diagnosis in October 2017 more or less coincided with a traumatic period of my life – my mother became very ill, and never really recovered fully from her first bout in hospital. During this time we were also dealing with getting diagnoses for our middlest and The Husband (eldest son is still on the waiting list), and getting appropriate measures in place for the two younger boys at school. The stress did take its toll, but rather than going back onto alopathic medication, I decided to try various St John’s Wort extracts.

St John’s Wort is the plant (actually it’s a weed also known as Rose of Sharon!) from which Prozac was originally extracted. In lower doses, it has a mild antidepressant effect with fewer and milder side-effects. I’m a great fan of the teabags, but sadly there appears to be a world shortage of them at the moment. I survived extremely well and quite happily on the teabags and low dose tablets for a while, and eventually, I came off them altogether.

So now, and probably since last August I think, I’ve been taking nothing for my depression, and it hasn’t come back. That’s six months, and despite being, at times, very unhappy about some of the stresses and strains in my life, and obviously, a close bereavement, I have not been depressed.

I believe that my diagnoses of autism, the process of coming to terms with it, learning more about who I am and why, accepting it, at times celebrating it, and taking my first tiny, tentative steps toward being an autistic advocate and activist, have mitigated my lifelong depression.

For now.

I am under no illusions – this might seem like a simple answer but I’m sure it’s not. It’s true that I’m happier, more content, more self-accepting, and more stable now than I can remember being ever before. But this is now. It may be that life throws a curve ball, and I become depressed again in future. And if that happens, I’ll try not to be stubborn about it. I’ll try all of my trusted coping mechanisms, and if necessary I will go back to the doctor.

And I’m by no means saying that this could or should be a solution to anyone else’s mental health problems – your mileage may vary. I know that autistic people suffer from disproportionate levels of mental health issues, and much higher levels of suicide rates than the general population. As far as I can see, for autistic people, getting a diagnosis can be the start of a mental shift in either direction.

Just – for me, right now, this feels different. I feel as if I finally know and accept who I am, for all my flaws and my triumphs. I’ve never felt that before. Today I am me – and that’s good enough.

Autie Hangover

My blog has been sporadic for a while. About eighteen months ago my mother became very ill, and she passed away last December. So my blog has not been top of my priority list.

But today The Husband told me about a new concept that he’s arrived at? Discovered? Created? And I was inspired to fire up the blog again. A brief look at Google shows me this probably isn’t entirely new, but I wonder if it will ring a bell with any other autistic people out there…

I’ve had a great week this week but it has been very intense. I did three yoga classes, one of them entirely new to me (Iyengar Yoga is apparently all about the hamstrings btw). I went out for dinner with family. I had some good news about my job, all around how my team is being reorganised. I had quite a few meetings, some with new people, some with people I didn’t know that well, and one of them involving, to my horror, a new and easy way to do videoconference meetings on our phones. Not being a great fan of audio conference calls, this is going to take a fair bit of getting used to. Or many claims that the camera on my phone mysteriously is no longer working…

I also did a short presentation to my immediate team about autism from my perspective. It seemed to go down well, and my team now understand why I complain so much about the air conditioning:-) Then I drove home – 150 miles including London traffic on Friday night.

And then this morning, I went to the hairdresser. I love my hairdressers’ salon. I have my favourite, but even when she’s not available, I have never had a bad cut from that place (Tangles in Usk, for any readers in the South Wales area!) They deal with haircuts for all five of us, and although they knew nothing about autism when we started going there, they deal beautifully with all of our disparate and bizarre needs. But they are a hairdresser, and there is a lot of social interaction involved, plus all of the noise of the dryers, the smells, the bright lights, hot water, cold water, hot and cold air, and this morning, a radio that was badly tuned on in the background.

All of this is good stuff – I had a great time, a very enjoyable week. But this afternoon, I crashed. I totally ran out of energy, fell asleep for a while and even now, generally feel quite ill. I said as much to The Husband, and he said that he does that too, feels as if he’s come down with a bug after a period with a lot of social interaction or organisation, and that he’s realised that actually, it’s an Autie Hangover.

We’ve discussed how this feels to both of us, and it’s pretty similar. An Autie Hangover feels like you’re about to come down with a bug – it has mild physical symptoms, headache, sore throat, aches and pains, and also extreme tiredness or exhaustion. It never does emerge into a full blown cold or infection though. Cold remedies and painkillers help, having lots of quiet, non-social time helps, and eating a lot helps. It can take a few days to recover, although if we catch it and realise what it is, we can make sure we recover a bit quicker.

And actually, we are assuming that this is linked to our autism – but perhaps it isn’t. Perhaps this happens to everyone…

So I’m asking all of my readers, autistic or not, is this at all familiar to you? Do you experience physical symptoms that feel like a mild illness or exhaustion after periods of intense social activity, or where you’ve needed to be super organised? Is this something new and exciting, or are we reinventing the wheel here?

#TakeTheMaskOff

This summer, there is a campaign on Twitter, Facebook and Instagram (and possibly elsewhere) called #TakeTheMaskOff. It started on 23rd July and as far as I can tell, within my Autistic bubble, it’s taken social media by storm.

Autistic people often mask. To me that means we try to pass as neurotypical. We mimic and approximate and follow what we see as neurotypical behaviour, so that we can fit in to the society that we live in without being criticised or mocked. As far as I can tell, many of us do it without understanding why we’re doing the things we do – we just copy what our neurotypical family, teachers, friends and colleagues do – or do what they tell us is appropriate, and stifle behaviour that they don’t think is appropriate.

This masking comes at a huge cost to mental and physical health. So the campaign to encourage autistic people to take their masks off, is one of encouraging better health in autistic people and more acceptance from the non-autistic people around us. If you want to know more about this campaign and the background to it, check out this post by The Autistic Advocate – #TakeTheMaskOff, or have a look at the posts under this hashtag on twitter.

(And now for the disclaimer – this is my story, and mine alone. All autistic people are different – if you’ve met one autistic person, you’ve met one autistic person).

I felt very enthusiastic about this campaign when I heard about it. And I still do – but I immediately hit a snag. I have obviously been autistic for all of my life, but I had absolutely no idea of this until I was 45, and I was only diagnosed nearly a year ago at the age of 47. I’m older, I’m female, I’m of higher than average intellect in some ways in which such things are measured (way below in others, as you’d know if you’ve ever seen me try to cook), and I have a late diagnosis. So that means that I have been masking for all of my life. I started adjusting my behaviour following disapproval, with no clear idea of why, probably before I could talk. Certainly before my own personality was even half-way developed. I continued to do that for all of my life, with greater and greater efficiency and success. So now, at 48 years old, I don’t really know where my mask ends and I begin.

For most of my life I’ve not known who I really am, what I really want from life, what I want to do, who I want to become, what my true dreams and aspirations are.  It’s a horrific, terrifying sensation to feel that you don’t exist, that you have no core. To feel invisible. Now at least I know why – all of that energy I’ve had to put into masking has taken me away from myself.

I tweeted a tweet about exactly this a few days ago, saying that I don’t know how to take the mask off, and by my tiny standards, it went viral. 92 likes and 19 replies to date, and some of the replies have sparked entire threads, and people have followed me and I’ve followed many of them back. Given that I have only 105 followers, I think that’s pretty good going.

Quite a few of the replies were people saying, ‘Yes, that applies to me as well, I know what you mean’. And I feel I may have tapped into something here. There are many autistic people I’m sure, who know exactly what their autistic traits are, and what they would like to do but feel they have to hide to be accepted. Those people have their own struggles, and being able to identify the mask and take it off certainly comes with risks and probably unintended consequences. I really hope that some of those consequences are positive ones.

For myself, I’m following a different path. I feel that trying to identify what bits of me are masking, copying, imitating, and what bits are the real me underneath, is a part of self-development, and just like any other learning curve, it’s taking work and investigation and experimentation. Some things I know already, some are new to me, some are baffling, some feel unlikely and possibly unconnected with autism altogether. And some are unexpected sources of happiness.

Some of what I have learned:

I have autistic obsessions, or areas of extreme and focused interest and enthusiasm. The two that I have had for longest are Komodo Dragons and oil rigs (specifically, looking at real oil rigs in real life either from the shore or once, from a ferry. It’s so exciting! No I have no idea why). I mean I like Star Trek (binge watching all of DS9 right now), and obviously I try to watch every Marvel Cinematic Universe film as it comes out – I’m sure they’d take my Autistic membership card away if I didn’t:-) But if I feel upset or in need of comfort and have a little free time, I’ll google Komodo Dragons just to cheer myself up.

I have learned how to stim more than I ever did. I always did do the thing with tracing patterns with my eyes – I didn’t know until very recently that this was a form of stimming (thanks Alis!) but apparently it is. But I’ve also realised that certain types of flapping, or waving my arms and hands around, in time to music especially but not always, look absolutely ridiculous to me but fill me with energy and happiness. Doing that just lifts my heart. I now look at the more obvious stimming that my children do in a totally different light.

I love being social and sociable, but it uses up loads of energy. After a successful social evening (sometimes during one), I start to flag, and I feel as if I’ve run a marathon. It’s great – it’s good for me – it increases my feel good hormones probably, and I really enjoy it – but it’s exhausting. And like physical exercise, the more I do, the more I can cope with, as long as I don’t totally overdo it.

I can do eye contact or I can concentrate – I can’t do both at the same time:-) At least, not reliably. I do stare off into space sometimes, but equally often I stare fixedly at the person I’m talking to. I try to be careful about the staring because I think it can be disconcerting to the person on the other end of it. Some people have lovely, warm, comfortable eye contact like a hug (quite rare) and others have eye contact that feels to me like an electric shock. And there is no relation between how I feel about that person and how their eye contact feels – I can be extremely fond of and trusting of the people whose eye contact feels fairly unpleasant.

The same is true of physical touch. Sometimes it feels like I’ve been hit quite hard, even when the touch is quite gentle. I put up with it because I know it’s usually a gesture of affection, and I appreciate the sentiment, but it does use up some of my teaspoons (or possibly just spoons – in our house we’ve always said teaspoons but I think the original blog post about internal resource and invisible disabilities referred to spoons. My children name their favourite teaspoons so that’s probably why – yeah, never mind:-)

How exactly am I supposed to find out which bits are me and which are masks? A couple of people on Twitter suggested I get drunk to find out, on the basis that in vino veritas. Obviously not roaring drunk, but relaxed and mellow perhaps. I have a very low tolerance to alcohol, but I know from experience that after a couple of drinks I get joyful and affectionate and positive. I see the good in everyone and want everyone to know that they are wonderful and special. So I’ll happily claim that as part of my authentic self.

But I can’t spend all of my life drunk:-) I guess that catching myself when I feel uncomfortable, learning to identify when I feel inauthentic and trying to track the root cause, and continual observation of myself and my feelings, that has to be the way forward.

This time last year I was midway through accepting that I was probably autistic, and it revolutionised my life and my view of myself.  I don’t think the core of myself has changed since then, but my new sense of self-acceptance and of identity have stripped away so much guilt and confusion that my life is completely different now. I have a feeling that examining my mask, and finding out what is really underneath is going to be just as much of a sea change in my life, and I’m quite sure that this time next year my life will be unimaginably different again.

I am interested to know if anyone reading this blog has similar experiences with many years of masking starting very young, and trouble knowing how to take the mask off. If you do, please do tell me about it in the comments.

 

The Look and Feel of Autism

How Autism Looks from the Outside

My diagnostic assessment has now come through. Here are some interesting observations from the ladies who examined me:

• She interacted appropriately with the examiner, however the quality of these exchanges was more stilted than would be expected from a woman of Mrs Miller’s ability
• Her reciprocity was less than would be expected, and she used some descriptive gestures but only in a limited way
• Her intonation was somewhat flat and monotone
• She used limited facial expressions and eye contact during this  assessment, noticeably less than would be expected
• The examiner had to work harder than expected to maintain the conversation
• She was able to answer questions but found it difficult to maintain the two-way flow of the conversation
• She sometimes did not notice non-verbal cues of the examiner that she had spoken for long enough. This reduced the overall quality of the exchange between Mrs Miller and the examiner
• She appeared somewhat socially awkward
• She found it difficult to demonstrate creativity and imagination

How Autism Feels from the Inside

Here is what you can see:

• I have been happily married for 27 years to the love of my life
• I have three interesting, engaging, beautiful children who make my heart swell with love at the very thought of them
• I have a fantastic network of loving and supportive friends
• I have an amazingly fulfilling, enjoyable, challenging, and yes, well paid, job, that I just plain love
• I can dress myself, run a household, sustain a relationship, raise children, hold down a job, speak, type, communicate with strangers, to all intents and purposes, function

Here is what you can’t see:

• Years of constant, usually severe depression
• The inexplicable (until now) sense of alienation – the sure and certain knowledge that I am not like everyone else, less than everyone else, unable to do the simple day to day things that everyone else does, with absolutely no idea of why
• The years of bullying, of being the outsider, of struggling to make friends, struggling to keep friends, being weird and offputting with no intention of being so, being taken advantage of, being scammed and conned and lied to, being mocked almost constantly, because I just am different – with no idea of why, or how I can change
• The multitude of times that I caused offence, without meaning to, struggled to communicate, was told I should know better, was told that I should know what I did wrong, was ignored, passed over, insulted, rejected. Over and over and over
• The struggle I have to get out of bed in the morning because the list of things that I need to do in order to just leave the house is so long – and it never becomes automatic. I have to check every day that I have remembered to wash, put on deodorant, brush teeth, brush hair, get keys, get purse, get phone
• The struggle I have to feed myself and my children a varied yet healthy diet because the opinions on what healthy means are so strong and so disparate, and mean making endless, constant choices. We’ve more or less settled as a family for a diet which is monotonous, and healthy on our terms
• The dread I have of hearing the phone ringing because I’ve spoken to too many people today and I’ve run out of social
• Me looking shifty at work because I’m tired and I’ve run out of eye-contact
• Me dreading the phrases ‘could you just knock up a one-pager’, ‘let’s just have a five minute call’, ‘could you just note down the actions here’, ‘it’ll have to be an audio’
• My constant worry about what I should wear for work, and that I have no real idea if I’m dressing appropriately
• The fear I feel when I have to walk into a room full of, not even strangers, but people I don’t know very well, or don’t trust. There are a lot of those about
• My discomfort at having a one on one conversation in a closed room with anyone except for my immediate family and very closest friends. I will always feel more comfortable if there are three of us – possibly four. But more than four is a crowd
• You probably don’t see me walk into walls, doors, tables, chairs, people. I’m usually covered in small faint bruises. You may not notice me drop things, freeze when I have more than one thing to pick up at a time because I can’t work out what my hands should be doing, take a minute talking under my breath before I’m organised to leave my desk. (Not the house, my desk). Take notebook. Take pen. Lock pc. Do I need my purse? Do I need my coat? Shall I take my phone? About half the time I forget something and have to go back
• You’re not with me every evening when I go through my day, assessing all of the interactions I’ve had for whether I ‘passed’, whether people noticed anything weird, whether I walked through someone’s boundary, whether I pissed someone off, whether I just plain got it wrong. With every single day comes a lessons learned assessment
• You’re not with me when I remember, sometimes unprompted, all the times in the past I got it wrong, feeling the rejection and humiliation all over again, wondering if I’ve solved those issues through experience or whether they’ll happen again
• You don’t feel the utter, abject exhaustion that means I sometimes cannot stand up. That sometimes leads me to fall asleep during the day as soon as the adrenaline ebbs

I can’t speak for any other autistic person – we’re all different, so that’s why they call us neurodiverse. But this, to me, is the difference between observation and experience. Unless you are autistic, you’re going to find it very difficult to understand what it feels like.

 

Bar Mitzvah

Yesterday my thirteen year old son had his Bar Mitzvah celebration. Many relatives and friends came to celebrate with him at our Synagogue, and later at Llanyrafon Manor (which I can thoroughly recommend as a venue if anyone needs one in the Cwmbran area!)

Even at our Synagogue, which is a Reform synagogue, the Shabbat service takes at least an hour and a half. When there is also a celebration, such as a Bar or Bat Mitzvah, the service can take much longer – yesterday’s was almost exactly two hours long. I’m used to this and I love the service, but I am astonished that our non-Jewish friends and family sat through a two hour religious service in a foreign language with such good grace. If they did get extremely bored, none of them said so:-)

Regular readers of my blog will know by now that my immediate family are all autistic. Myself and my youngest son now have official diagnoses; The Husband has started on the process of getting his own diagnosis; and Middlest, at 13, is right in the middle of being assessed by ISCAN – a new single point of access, fast-track service involving all the disciplinary specialists (such as paediatricians, psychologists, speech and language therapists). There is very little doubt in the minds of anyone who has met him and has professional knowledge of autism that he will qualify for the diagnosis.

So it is a mighty big deal that Middlest got up on the Bimah (equivalent of a pulpit I think), in front of about 100 people, many of whom he didn’t know, led the congregation in prayer – in Hebrew – and then read from the Torah scroll, in Hebrew, where the Hebrew is unpointed (has no vowels), written in columns, and is perfectly justified – which means some of the letters are stretched sideways.

He also wrote (with the help of our Rabbi) and read out, a D’var Torah, which is an  English commentary on the portion of the Torah that he read in Hebrew, containing his own observations and conclusions on the portion.

He has been practising for over a year. There were times when we thought he wasn’t going to be able to manage to get through the whole of his portion, which was 15 verses long, in addition to the prayers and the D’var Torah. In fact, there are other Bar or Bat Mitzvah candidates who perform more of the ceremony than Middlest did – but there are some who do less.

He stood at the door before the service, greeting guests and handing out kippot. He read with confidence, and didn’t get flustered or upset the very few times he stumbled over a word or lost his place. He coped perfectly with a couple of unexpected additions to the service. He spoke to friends and relatives afterwards, thanking them for compliments and being very social.

I am beyond proud. Kvell doesn’t begin to describe how I feel. I am extremely grateful to the many people who have supported Middlest during this process, and especially to The Husband, who is not Jewish, but has been there with Middlest every step of the way, including coming up onto the Bimah with the family for the Bar Mitzvah blessing, and the understanding and acceptance of the Reform Jewish community who allowed him to do so.

Middlest is exhausted today, and also still overexcited. We know from experience that he won’t be back to his usual self for at least a week – these types of excitements and efforts take a great deal of recovery time.

But he did it. He achieved something absolutely outstanding. And from now on he will always know that no matter how hard he finds the tasks, activities and achievements that neurotypical people find easy, this makes him different, not less.

Meltdown

I had a meltdown. At least, I’m fairly sure that’s what it was. I’ve had many in my life, but not that recently – not since I realised I was autistic.

I’d had a very difficult week at work, and there was a work social arranged for the Thursday evening at a local pub. I arrived later than my colleagues, on my own. I was already so stressed that walking out of the office, and round the corner to the pub in the rush hour, through crowds of people, felt difficult and exhausting.

I arrived at the pub, which was also crowded. There was loud music playing, and louder conversations. The pub wasn’t very bright, but there were flashing lights, I think from slot machines, and dazzling lights visible behind the bar. By the time I got there, I’m guessing a lot of the people had had a few drinks and people sometimes behave unpredictably when they’ve been drinking. I could see and feel that in the way they were randomly shouting and laughing, so I felt threatened and even more on edge.

I couldn’t find my friends from work at first, so I walked round the pub a few times. The noises and flashing lights started to feel like physical blows, and some of the people were pushing past each other, and me, getting into my personal space. Someone turned awkwardly away from the bar and banged into me – not hard enough to hurt, not even hard enough for them to really notice, but it shook me up and I started to feel upset.

I found the people I was looking for, and made my way to the table, but as I got there I realised that I wouldn’t be able to maintain any kind of normal conversation at the same time as protecting myself from the sensory overload. And I shut down.

I remember saying something along the lines of ‘I’m out of here, see you later’, turning around and bumping into a few people trying to get out of the pub. Then I was outside, on the pavement, walking but feeling disorientated – I was expecting to see the Tube station on my right but it wasn’t there. I carried on walking in the same direction. A couple of times I stumbled, as if I’d missed a shallow step, or the pavement was slippery (I hadn’t and it wasn’t). But I didn’t stop and ended up walking round a corner and seeing the Tube, and then I knew where I was, and was able to get back to my bedsit ( where I stay when I work away from home during the week).

From the point at which I reached the table and knew I had to leave, I didn’t feel much emotion. I phoned my husband as soon I felt stable and was on my way back. I was slightly worried about what my work colleagues would think; I wondered what I should tell them, and when I should try to speak to them; I felt a bit embarrassed, and when one of my colleagues rang, I felt unable to speak to him on the phone but chose to communicate by text instead.

But that was all.

I’ve had meltdowns before, or rather, since I didn’t know what they were at the time, I’ve had episodes where felt a desperate need to get out of a situation, and immense amounts of pressure. At most of those times in the past, I felt overwhelming emotion – usually extreme distress which could transform into rage. This time I did not feel that.

I’m working on figuring this out. I think my acceptance of my autism, and of some of the darker aspects of how it affects me, has made a major difference to me. I think that in the past, I felt that my reactions were unacceptable; that I was somehow wrong or inadequate to react or feel in those ways in the first place; that I should have been able to control myself, and therefore felt even worse about myself when I was unable to. And that I felt judged by everyone else when I failed.

I don’t feel like that any more.

I seem to have become hardened in some way. Uncompromising. Maybe I’ve spent a lifetime compromising and I’m not prepared to do that any more. I’ll do a certain amount of adjusting myself and my attitude to fit in, but not to the extent that it causes me damage.

I have mostly given up on socialising for the moment. I might try to find a way of spending social time with my colleagues in a different setting, but it’s hard to find even a coffee shop these days without loud music playing in the background, and I doubt anyone would take kindly to taking coffees out to sit in the courtyard in November. And then the effort of trying to explain why I can’t cope, to people who don’t experience sensory overwhelm and therefore, with the best will in the world, can’t quite understand what’s going on – I don’t have the energy spare for that. Not right now.

I do like being social. I enjoy spending time with people I like, talking to them, listening to them, finding out about them, engaging in conversation about work, families, current affairs, films, music (I can even manage conversation about some sports, although not many and not football and not for long). I think this is probably far more common than the wider world understands – not all autistic people are introverts. And even if we are (I think I am), some of us get lonely without a certain amount of social contact.

But I clearly cannot do that in the only environments that seem to be available in a neurotypical world. Given a jackpot win on the Euromillions, I would start a chain of autistic-friendly venues. Or even just one. The Family have in fact started planning how this would look – a cafe with different rooms for different tolerances of noise levels, maybe even some self service points for those of us who can’t talk, or can’t face talking to people some of the time. Menus that are modular, with very plain and simple food, and the ability to produce and price any combination of ingredients. No special offers. No freezing noisy aircon.

In fact if there is anyone out there who wants to start up a new, autie-friendly business, please get in touch…

When I Got It Wrong

I haven’t blogged for a while. Life is pretty good overall. My husband and children have had many fantastic achievements to their names over the past few months, and I started a great new job earlier in the year, which is taking up a lot of my time.

I’m lucky in my new workplace. I love the work I’m doing, and I feel as if I fit in. I work in an IT based environment, and cliche though it is, I think my colleagues are more used to, or at least more tolerant of, people who sometimes get it wrong. There are people around me who to my eye, appear to have some autistic traits, even if they would never think of using the A word about themselves. And most of the time, I’m very happy and comfortable in my work, and with almost everyone around me.

But sometimes I still get it wrong. I have a tendency to categorise everyone into those who are ‘easy’, and those who are ‘difficult’. This doesn’t reflect what kind of people they are at all – it’s about how I react to them. Those in the ‘easy’ group are easy to talk to. They’re easy to start a conversation with. They seem more forgiving of my weirdnesses. I don’t have to watch every word or force myself to make eye contact when I’m interacting with them. And most importantly, they tend not to react in ways I don’t understand.

I’ve learned how to talk to people in a polite, friendly and helpful way over the years. It’s not false at all – I am a polite, friendly and helpful person. This is essentially my true inner self, minus some of the more bizarre quirks that come with my autism, and minus the paranoia and depression that have, in the past, come with it as well. I guess the last two stem in part from the constant feeling of not fitting in, and not understanding why. It makes sense that as I realised that I’m not neurotypical, that there are other people a lot like me out there, my depression would lift and my life would become easier.

So easy people are those who respond well to my translation of who I really am, through a kind of filter which adds some of the social niceties I’ve learned over the years. Easy people react, to some extent, predictably to what I say and how I behave – or if they don’t, it’s obvious to me that it’s them and not me. Or, they just plain tell me – other people also have bad days.

Difficult people are those who can become hostile or dismissive. They respond with rejection to overtures of, not friendship, but a friendly and informal relationship. They are those who are rude. They are those who try to undermine me or cause arguments with me, or to agree with me one minute and disagree the next. A very wise friend of mine describes it as ‘someone standing on your head to make themselves six inches taller.’ They cause instability in my mental processes, and eventually in my mental health. I don’t know if they do it deliberately or subconsciously, and I don’t care. I’ve learned to avoid such people in my social life – they drain my energy and cause me to become exhausted very quickly.

This isn’t always possible in all kinds of non-social situations. I’ve moved dentists because I couldn’t cope with a receptionist who was constantly rude and dismissive. I’ve changed jobs because I was having to work with a majority of people who were inconsistent and blamed me for the problems that those inconsistencies created. They may have had a valid point – rigid thinking is an autistic trait, and maybe NT people just adapt to inconsistency without any problems.

I’ve had to think hard how to work with such people when I have to, and I now have a plan of action, which I work my way through systematically. Some people respond well to it – some don’t. The ones that don’t, those who fall out of the end of the process with no resolution, probably wouldn’t notice. I remain helpful and friendly toward them – but I avoid them as much as possible.

There is a term – Social Story – which is a trademark originated and owned by Carol Gray. It has a very specific meaning, and a social story has to adhere to many criteria, so the things inside my head helping me cope with the world are probably not, strictly speaking, social stories. But they are something similar – they’re processes that I can select in any situation which let me know what I should be doing, and what some likely outcomes will be.

This vast set of processes serves me well in most of my life. But sometimes, I still get it wrong. Recently there have been a couple of occasions where someone I had previously categorised as easy, suddenly reacted in a way I did not understand. I’ve felt that I’ve annoyed people, and I almost understand why, but I don’t quite see how I could have reacted differently. A few days ago I was at a social event with many people that I feel comfortable with – and suddenly I couldn’t read the situation, couldn’t read the people around me, didn’t know how to start a conversation, who to talk to, what to do. I felt I was pushing in where I wasn’t wanted. And along came that all too familiar feeling of being the weirdo on the bus. It didn’t last long, because a couple of kind people saw my ‘rabbit in the headlights’ look, and invited me into their conversations – and overall I had a great time. But I don’t know why it happened.

I’ve been looking back over my life, and looking at some of the many many times I got it wrong. When I copied people because I didn’t know what to do, not realising how creepy and annoying that can be for the people on the receiving end. When I pushed myself into situations where I wasn’t wanted, because I missed the signs until much much later – sometimes decades later. When I became needy and demanding because I needed reassurance that I was actually just like everyone else – and of course, even when it was forthcoming, it was never enough, because I’m not like everyone else (in the NT world at least).

It’s humiliating. It never stops being humiliating. It is not the fault of the people who rejected me – they can’t help how they react any more than I can. If they try to be kind, I miss the signs. If they try to be harsh, I’m devastated. It’s a lose lose situation.

I think I’m doing it less often now – I’m learning the signs (I’m sure I only get things wrong about half of the time!) I’m happy enough with myself to carve my own way without that desperate need for the approval of others, so I think I copy a lot less often. But I still have times when I feel absolutely lost. When I’m living in a foreign country, where I think I understand the language, but in fact, the words don’t mean what I think they mean.

I’m lucky. I’m about as certain as I can be that my family and a few true friends love me and accept me for who I am. So I will rely on them on my lost days, and try to be the best I can be without compromising who I really am. I guess that’s my overall, lifelong, social story(TM).

Imagine

Last night there was a terrorist attack in the centre of London. So far seven innocent people have died, and three attackers were shot dead. This follows a suicide bomb at a concert in Manchester less than two weeks ago, and a similar attack involving a car and a knife on Westminster bridge in March. And there have been a myriad of such attacks and bombs in other countries over the last few months.

These are unexpected, traumatic incidents that cause appalling damage to everyone involved, and horrify the vast majority of people who witness them, either on the scene or from the wider distance. But even when such events are not taking place, on a more personal level, and a lesser scale, people do damage to each other. All of us have will been hurt by people we love and trust to some degree, at some time in our lives, with varying effects.

It’s easy to become, and remain, hurt, angry, bitter, about all of these kinds of things. There is a saying ‘Fool me once, shame on you, fool me twice, shame on me’. But after years of hanging on to past pain and rage, eventually I found I don’t agree. In the times we live in, with evil and trauma all round, I believe I have to make a choice. There is a benefit in being careful, wary even, taking sensible precautions – listening to our intuition, learning from the past. But there comes a point where that tips over into rage, and hatred, bitterness and cynicism. Where, if I go down that path, I lose my belief in love, and my joy in life and my ability to trust, and see the best in people. Where I start wanting to hurt other people who have hurt me or my loved ones or even, as last night, murder people I don’t know. And then I’m just perpetuating the cycle.

I wish with all my heart that no-one ever felt the need to cause needless pain and damage to others. (Needless because dentists and surgeons and doctors sometimes cause pain – and sometimes emotional healing is painful. I don’t regard that kind of pain as unnecessary). But even though they sometimes do, I will try with every part of me not to want revenge. To accept the hurt and anger that comes immediately after incidents like this, but to let it ebb away. To do what I can to stop other such incidents happening, if I can in any way, but somehow to prevent myself from becoming bitter and cynical and angry. To hold onto my belief in love, and loving kindness.

I know sometimes I will fail – but that’s what I aspire to. And if my naivety and trusting nature means that sometimes the evil in the world hurts me, I think that’s a price I have to pay. Because if I go down the path of anger and revenge, I lose my ability to help, and heal, and maybe to make the world just the tiniest bit of a better place. And in the end, if I can boil all of my spiritual beliefs down to one single tenet, that’s why I think I’m here, to do what I can to make the world a better place.

By the way, this post has the title Imagine for two reasons. Firstly, Imagine, by John Lennon, has a vision of a world where there is peace and love, where ‘the world will live as one’, a dream worth holding onto in times like these. Imagine is also a song associated with a yearly event that I and some of my friends observe, called the Celebration of Love. We have been celebrating this day for over twenty years, and gradually more and more people have started joining in. In hard times I find it helps to hold on to the thought of this day. Anyone who holds similar beliefs about love and the importance of love in the world is welcome to join in – you can find out more about the Celebration of Love here.