Getting lost

This is another post that I hesitated to write, because I don’t have any answers! But perhaps the act of sharing my difficulties in this area is an answer of sorts, in that it might offer comfort and reassurance to those who might be asking themselves, ‘am I the only person who does this’? In fact, this would be a kinder question than the ones that I used to ask myself, which were along the lines of, ‘why are you so stupid?’ or, ‘why can’t you do something simple that everyone else can do?’

Let’s take a perfectly straightforward task – finding an address in London where I haven’t been before. I have got the address, I have got googlemaps on my phone (in fact I have got two versions just in case), I have got a paper map with the route highlighted. What could possibly go wrong? I am at a loss to explain it, but something always does! I can find the road but not the building; I can find the building but not its entrance; I can find the road and the building and the entrance but once inside I can’t find any sign of the seminar I’m supposed to be attending… It’s as if I have entered some sort of twilight zone.

On one memorable occasion, I was going on a training course, and the location was (let’s invent one) 13, Bishop Gardens. I managed to find the rough vicinity, but the roads were a confusing mass that didn’t look like the map (this happens a lot; I have no idea why). There was also a Bishop Road and a Bishop Court and a Bishop Avenue and there seemed to be no rhyme or reason to the numbering. Although I had arrived with plenty of time to spare, now I was in danger of being late, which I cannot bear, and was getting hot and flustered running about clutching my map.

Finally I found a no 13, and arrived just behind some people whom I assumed were fellow course attendees. They held the door for me, but I stopped at the empty reception desk while they swiped themselves into the corridor beyond. Not course attendees, then. I waited at the desk, and no-one came. I couldn’t see any signage for the course. No-one else entered the building. It was getting near to the course start time. Finally I worked out that I was in 13 Bishop Avenue instead of 13 Bishop Road. I would have to run out and have another go. Except that I couldn’t work out how to open the door. There was no door release button. I was stuck in the lobby of a building where I had no business being, late for a course, no-one had entered or left for 20 minutes, and it felt as if I might be trapped forever.

I can’t remember how I got out, only that I arrived at the course hot and dishevelled and distressed. This is just one of so many incidents; there have been thousands. Trying to get out of an unfamiliar station & following the ‘way out’ arrows until they petered out at the far end of a dark platform. Trying to find the car park having had my train journey disrupted and been forced to get out at a tiny rural station, being confused by the ‘way out’ arrows that contradicted each other and walking two miles in the dark (very frightened) before walking all the way back and finding the car park about 10 feet from where I’d got off the train. Running into work following googlemaps on my phone and ending up running over 10km (instead of 3 km) because I hadn’t realised that a glitch on the app was sending me hugely astray. Somehow getting onto the wrong floor at a previous job and thinking that the office move had gone ahead earlier than planned (it was an empty floor with everything packed up) and that I had been left behind, and ringing my boss at the time to ask where everyone was. (They were on the floor above.) Getting so lost out riding that (pre mobile phones) I had to stop and ask a householder to phone someone to come and get me, and once or twice had to let the horse find their own way home.

On one occasion, I was following signs for a bridleway I hadn’t found before. Predictably, they petered out on the headland of a field and I had forgotten which direction I’d come from. I blundered about for a bit getting more & more upset, then finally gave the reins to the horse. She set off purposefully down one side of the field, then turned a corner and continued up the next side. When we got to the next corner, I thought she was going to go down the third side, and I thought, stupid horse! You’ve got no more idea where we are than I have. You’re just going all the way around this field! But then she stopped, looked around and barged through a very thick hedge, and I’d have been scraped off if I hadn’t quickly lifted my knees above the saddle. And ten minutes later, she’d found the road and I knew where we were.

And I did the same thing out running, following footpath signs. The footpath had been ploughed up, but I orientated myself with two tall trees and headed across the field towards them. Once I’d got to the other side, unsurprisingly I couldn’t find any signs telling me where to go next. I was faced with a large ditch full of brambles. After running about trying to find a sign and failing, I decided to go back the way I’d come. I couldn’t see my footprints in the plough though and I must have run back at a different angle because then I couldn’t find the bridge I’d crossed to get onto the field. The field wasn’t flat, so I hadn’t been able to see right across it. So then I was running up and down beside a different ditch trying to find the little bridge. How can a bridge disappear when I’d crossed it 30 minutes ago? And this time I had no horse to help me.

Why do I get lost so much, despite my earnest, careful preparations? I have a few vague theories. One is that some people with autism can’t see in pictures (some of us are the other way & are very, very good at it – I’m not!) so that it’s hard to visualise from a map where we’re going. Another is that when I’m anxious, I am hovering on the edge of shutdown, and when that happens, my brain switches to ‘off’ so I am deserted by logic. There might be some interaction with the literal mindedness – if an arrow says, ‘this way’, then I will follow it and be completely bewildered when it doesn’t take me where I wanted to go. If driving, I think it’s partly the shutdown thing and also the pressure of having to make a split second decision. Do I turn off here or not? As I have said before, all possibilities look equally likely to me, and when driving it isn’t usually possible to stop and have a think!

What can be done about it? As with so many things, even if it can’t be ‘cured’, it is possible to nibble away at the edges to lessen the impact. For me, what helps is to make good preparations. I examine the route on googlemaps. I get a picture of the building, if possible, so I know what I’m looking for. I have a paper copy of the route. On my paper copy, I highlight the route to make it clearer. On the same piece of paper, I write down the address, the name of whoever I am meeting and at least one phone number. The act of having done this much preparation clears some bandwidth so that I move a step away from shutdown. If I get lost – I have the address and (if I really have to!) I can call someone. I don’t have to worry so much about the what-ifs which makes a shutdown less likely. I am unembarrassed to get someone to go with me. I am unembarrassed to ask someone to be on standby so that if the worst comes to the worst, I can share my location on whatsapp and they can text me where to go and what to do.

I always leave plenty of time. Getting stressed about being late will only add to the likelihood of shutdown, and the last thing I want is my brain going offline. And finally, and most importantly – I have stopped giving myself a hard time about it! I have already written about my spiky profile. I have given myself full permission to be good at some things and hopeless at others. I already know that I am very prone to getting lost, so when it happens I just think of it as creating yet another funny story rather than being the end of the world. Getting lost doesn’t make me stupid – it’s how I’m wired.

So – while getting lost isn’t much fun, we may be able to lessen the possibility by good preparation, it all adds to life’s rich tapestry and we should congratulate ourselves for being unafraid to keep trying.

Imaginary friends

This is a bit of a strange one, and I have been in two minds about whether to write it, but I was personally hugely relieved to discover that having imaginary friends can be a part of the autistic condition, so I have decided to go ahead in the hope that I might be able to provide reassurance to someone else.

I have had imaginary friends for as long as I can remember. My first was a Red Indian – I have no idea what inspired me to create him. He was a companion, someone to ‘talk’ to, someone who always took my side. After that initial friend, they tended to be characters from literature or films. One was a lady who appeared on a news feature for scarcely a few minutes. Not all of them are the same in my imagination as depicted in the book or film. I have a whole multitude of them now; every so often, a new one is added.

What purpose do they serve? For me, they really do fill a gap. I don’t have real-life friends; I am socially awkward and the whole ‘friend’ thing is simply beyond me. It wouldn’t occur to me to phone someone ‘for a chat’ or to meet someone for a coffee or to go shopping. If I tried to do any of those things, it would be an embarrassing ordeal of not knowing what to say. With imaginary friends, it’s so much easier. They are always available, I can grab whichever one suits my purpose at any given moment and there are never any awkward silences.

I might be driving somewhere unfamiliar and need some reassurance (I am extremely good at getting lost) and it’s comforting to have someone confident and friendly in the passenger seat giving me support and encouragement. If something upsetting has happened and I need to talk it through, an imaginary friend is always to hand. If I am lonely and want some companionship, I can get it in an instant. Although they are entirely imaginary, these people really do have their own characters and bring their own perspectives to any situation. And the relationship is reciprocal – sometimes they need my support and encouragement. Perhaps it is that I like to support and encourage and they provide me with an outlet?

Despite the hugely beneficial role that imaginary friends played in my life, I still felt guilty about them. What if it was a form of mental illness? What if I really should have grown out of it by now? But then two things happened. Firstly, I attended a support group and the chair looked around the (very large) boardroom and said, ‘Good. There is plenty of room for our imaginary friends’. This was the first time that I had ever heard another adult admitting to having imaginary friends – and not only admitting it but not being embarrassed to do so. The second thing was that I read in Tony Attwood’s book that autistic people do tend to have imaginary friends, and provided that they KNOW that they’re imaginary, this is totally fine and not any sort of problem.

Finally, I had ‘permission’ not to feel guilty about my imaginary friends! There is no doubt in my mind that they are purely imaginary and not real, and that means that I can enjoy their company without the guilt of thinking that maybe the behaviour isn’t healthy.

I do not know how many autistic people have imaginary friends. I can only speak for myself. I have a lot of them, I really enjoy having them in my life and now that it has been validated by Tony Attwood, I feel fully entitled to make the most of them. I am not sure whether having imaginary friends stops me making real life friends – but I am so bad at real life friends that I don’t think it’s relevant. With imaginary friends, I have the luxury of always having someone to talk to, any time of day or night, no matter where I am. I can vent, I can talk things through, I can have quiet companionship without any awkwardness. I really do enjoy it – and now it’s ‘allowed’.

So if you have imaginary friends and feel bad about it – don’t! It’s fine! And if you don’t have any – why not get some? You’ll always have someone to talk to, and you don’t even have to remember their birthday! Win-win!

Meetings!

I promised that I would write about this topic, so here we go. As ever, I can only write from my own perspective, but it might help others to read my ramblings about why meetings can be problematic for some of us with autism. It seems to me that a lot of things converge that might be do-able singly but which simply gobble up too much bandwidth taken together.

Some of us, myself included, have auditory processing issues. For me, this means that there is a very definite lag between my hearing the sounds of the spoken word and being able to convert it into meaning. It’s almost as if I am having to translate from a foreign language as step 1, then tease out the meaning as step 2. This lag increases the more people are present in the meeting, until it almost becomes white noise where the words are making a sound but I can’t really decipher it.

Extracting the meaning is a task in itself – and it is more than just making sense of the words. It also involves setting the words into context. So if someone makes a statement, even a relatively straightforward one such as ‘the project is running two weeks behind’, that immediately opens up a whole tsunami of questions in my head. What are the implications of the delay? Who will be affected? What are the knock on effects on other projects, if any? What’s its priority relative to all the other projects? What’s the financial impact? How worried should we be? Should extra resource be diverted to it? Is this something I should know more about? Is it even relevant to me? And every one of those points would spawn another load of questions.

This isn’t because I am brilliant at ‘challenge’ or ‘thinking outside the box’ – it’s because to me, all these points have equal weight. I cannot tell the relevant from the irrelevant, as there simply don’t seem to be enough parameters on any of the information. And every time anyone says anything, it gives rise to another set of internalised questions, like a signpost with pointers in all directions – including up and down. A sphere of pointers, all of which are exactly the same length. Hence the perpetual feeling of vagueness and that I am never totally sure about how to locate anything into the wider context. Everything feels fluid and relative; nothing feels fixed.

And then there’s the issue of joining in. In a small meeting where I know all the people and am familiar with the subject matter, I might occasionally have a valid point to make, but then the struggle is to work out how to join in. One person seems to start talking as soon as another has stopped. I don’t like to interrupt, and I am not sure whether what I want to say warrants an interruption. Or if I go for it, usually the other person just keeps talking. I haven’t got the knack. Joining a conversation is like trying to jump onto a moving train – I invariably mis-time my jump, bounce off the train and land with a bump back on the platform.

On the odd occasion when there is the perfect spot to join in – sometimes I can’t get any words out, thanks to situational mutism. I used to think that it was shyness, but it’s a proper barrier; my words are blocked from coming out. Then the conversation moves on and I have missed my turn.

Taking notes is interesting as it adds another stage on top of the delay in translating noise to speech and then extracting meaning. This extra stage is the picking out of the wheat from the chaff and only writing down the important bits. I do not have a prayer of processing everything quickly enough to do this, so all I can do is to write down what people say, verbatim, and then make sense of it afterwards. If I try only to write down the important stuff, while I am trying to decide if something is important or not, the conversation has moved on without me listening to it, so I will have missed a chunk! A colleague has had some success with recording meetings on Teams (with everyone’s permission) and then producing a transcript, but it isn’t always appropriate to record or comfortable to ask.

Leading meetings is a tricky one. I am actually capable of leading a meeting, especially where there is an agenda, I know the people and there aren’t too many of them. The trouble is that I am trying so hard to make sure that all the items are discussed for the appropriate length of time and that I am making the correct amount of eye contact and speaking for the right amount of time that I am not really ‘present’ and might not remember much of it afterwards. I can only spin one plate at a time

So, how to cope with meetings? There are several tactics that can help. Firstly, I take the pressure off myself by acknowledging that there is a valid reason why I find them challenging. I also prepare very well, so before going into a meeting I will have a list of questions that need to be answered. I know that the bigger the meeting, the more I struggle, so I might hold several smaller meetings rather than one big one, or even see if some points can be dealt with by email. If I am leading the meeting, I have someone else to take notes, relieving some pressure. If I am worried about situational mutism, long pauses while I gather my thoughts or not being able to answer questions if put on the spot, I might tell people beforehand that I am autistic.

And I wasn’t too embarrassed to accept coaching when it was offered. While I am reasonably efficient at trundling through an agenda, I struggled with the polite preliminaries and valedictions – how to start and end a meeting gracefully. We developed a mini script so that I had a framework to follow, and that helped me to feel a lot less awkward.

While there are some things that I simply cannot change, such as the auditory processing issue, there are a lot of things that I CAN change. I can deal with some issues by email, I can speak to people individually rather than in a group, I can have a note taker, I can make sure that I am very well prepared, I can accept that my own notes are going to be verbatim without blaming myself, I can have my meeting script in front of me, I can share that I am autistic. All these things take off some pressure, which in turn reduces the amount of bandwidth taken up – which means that I have more free brain space. I have set myself up to do my best when out of my comfort zone, which is good enough!

Shutdowns

I have always suffered from these, but until I started doing a lot of reading post diagnosis, I didn’t have a word for it or understand what they were. I thought that they were ‘just’ panic attacks and thought that I should be able to control them.

So what is a shutdown? They affect different people in different ways, so I can only really describe how I experience them. It’s as if I have a certain available bandwidth to deal with life, and once that bandwidth has been exceeded, I can no longer cope and all my systems start to freeze up. Sometimes it’s an accumulation of things; sometimes it can be one big thing. I find noise very stressful, so if there is a lot of noise and I am trying to work, I might be using up 80% of my available bandwidth just dealing with that, so if another stressor arrives, such as an email requiring urgent action or a sudden decision needing to be made, that could be the final trigger.

A busy (pre Covid) office environment will have me hovering constantly on the very edge of shutdown. It is usually bright, there are lots of people talking, there are people on the phone not keeping their voices down, there is the sound of the printer/photocopier and there is also the distraction of people moving about. No one ever sits still for long, and the constant getting up and down and movement is on a par with noise.

When I start to shut down, my brain is literally closing my world in, so that all I can do is look down at my own laptop. I can’t move, I can’t talk, I can’t think, it’s almost as if I can’t breathe. There is also absolutely nothing I can do about it except to sit quietly and hope that it will lift. The bad ones are white outs, where everything goes white as if I am in a snow storm. I had to get off the tube once as it was busy (big stressor), I wasn’t sure whether I was on the right train (we will have a blog on getting lost at some stage) and I was worried about being late. I had a shut down, so in fact forgot where I was going and couldn’t even locate where I was on the tube map diagram, even though it was just one single line.

I got off the tube, sat on a bench and had a full white out. I couldn’t remember where I was going, how to get there or what line I was on. I sat quietly but badly frightened as I couldn’t really do anything else, and little by little it lifted and everything started to come back. I could remember my destination. I worked out what line I was on. I worked out what I needed to do to complete my journey. I let another few tubes go until I was feeling settled, and then I got on the next one and all was well. This was pre diagnosis so I thought it was a bad panic attack.

Unfortunately, meetings are a particular trigger – I will explain why in another blog. At one stage in my career (pre diagnosis), I had to go to quarterly board meetings run by someone who was somewhat despotic, and I had a white out in most of them. A white out means that I cannot hear what is being said, let alone interpret it, and all the coping techniques in the world are of no use. My system recognises that I am in a situation which is simply unbearable, and the shutting down is a form of protection. Those meetings were horribly stressful as anyone could get picked on and torn apart at any time, so my stem was trying to get me ‘out of’ that toxic environment.

How has diagnosis helped? It really has helped a lot to be able to recognise shutdowns for what they are – a completely involuntary and very powerful response to having exceeded my bandwidth. I exceed bandwidth – I have a shutdown. Cause and effect. No shame. Unpleasant but no longer to be particularly feared as they will lift if I sit quietly. Or if I have to stay in the stressful environment, the shutdown will continue, but when I have removed myself, I know it will go away when it’s ready. I am not going mad. There is nothing wrong with my mental health. It’s how I am wired.

And of course, I can plan. If I know that there is going to be a lot of noise, for example, building work at home when I am trying to work, I can wear my noise cancelling head phones. I can start work early so I get some quiet hours in. I will learn what I can do to avoid triggering them and although they are very unpleasant, I won’t be frightened. I can think, oh dear, here we go, and know that it is just cause and effect. And the best thing is that I no longer have to feel awful about myself for having them. I am not being a precious little snowflake; shutdowns happen of their own accord and I will not berate myself any more.

It’s all part of the gradual process of mapping out my autistic landscape, and accepting how I am. That’s not to say that I have to throw my hands up and feel that I am powerless; it’s working out how to do the best I can with what I’ve got and develop work-arounds around my triggers while at the same time not being embarrassed to be me.

Autism and phone calls

I will start by saying that not all autistic people have difficulty with phone calls. An autistic friend of mine has no difficulty at all. They have a very strong pragmatic streak, and if faced with a task, will happily make a phone call if it’s the most efficient means to achieve an end. I, on the other hand, really hate using the phone. It wouldn’t occur to me to ring anyone for a chat, and if I really, really have to make a phone call, it can take me several days or even weeks to work up to it. And if something goes wrong, for example the other person not picking up or the call dropping, the clock is reset and and it can take several more days for me to work up to it again.

Why do I hate phone calls so much? They do definitely fill me with dread. I will always email or webchat or message instead if at all possible. I think a significant part of the issue is that phone calls are in real time. If emailing, I can have a good think about what I want to say, write a first draft, read it through, make any amendments, and if I’m still not sure, I can save it and go back to it later on. When I get a reply, I can open it when I’m ready (I’m not always ready, and do sometimes find it impossible to open emails or read messages), I have plenty of time to digest the reply and think about how I want to respond, I can even forward it to someone else if I need a second opinion.

Phone calls are very much in the present. Many autistic people process the spoken word very slowly…for me, there is a lag between ‘hearing’ and translating the sounds into intelligible words. Then I have to derive meaning from these words, then think of how to respond. I simply cannot process fast enough to be able to keep up; it’s as if my brain is buffering. Phone calls also generally require some sort of decision to be made…what time, when, what location, should one course of action be taken over another? I cannot think fast enough! And there is the worry of coming across as either hopelessly dithery or rude. I am invariably very stressed on the phone and as a result will be curt, and then embarrassed afterwards. And of course, there is the concern when making a phone call that I may have called at a bad time, or that the person might be unfriendly.

I don’t like receiving phone calls either. I am not sure what they want, and again I cannot process fast enough to be able to think through all the options of anything they might be asking. I once had to transcribe a lot of interviews and could pause the speech whenever I wanted, hop back a bit and replay it, listen over and over until I was satisfied that I had correctly interpreted the meaning – this is what I could do with on phone calls. A ‘pause’ button to give me time to stop and think, gather my thoughts and not get flustered.

The diagnosis of autism has given me an understanding of why I hate phone calls. I am not just being wet or precious. I am not making a mountain out of a molehill. My dislike has a cause – it is not my fault that I cannot process fast enough. No-one would like being thrust into a situation where everything was happening at too high a speed and they were reduced to feeling bewildered. The diagnosis has also removed a layer of worry – I no longer have to berate myself for hating the phone. I know why I feel that way, and I don’t feel guilty for taking evasive action whenever I can.

And with so many companies now having a webchat facility – the need to make phone calls is reducing all the time, and I am very grateful for it.

Executive function

This is a large and complex topic, and hard to cover adequately, but I will try to explain how I understand it and what strategies I employ to make up for my difficulties in this area. There are lots of definitions of executive function, and as good a definition as any is that it is a group of skills which we need to employ at the same time in order to achieve a goal. Therein lies the tricky bit – ‘at the same time’. I like to do one thing at a time, and in fact I can only do one thing at a time. It’s a bit like viewing the world through the cardboard tube on the inside of a kitchen roll. I can see the thing that I’m looking at very clearly indeed, but the rest is completely invisible. I can change focus and look at something else, but that involves tearing myself away from Thing A and then slowly working my way into Thing B. It gets interesting if I have to switch back to Thing A as it’s as if it’s been erased from my memory and I have to start familiarising myself all over again.

So the skills that have to be juggled at the same time include organising tasks and prioritising them, thinking what likely outcomes might be, being ready to shift course if necessary, using working memory to keep track of everything… There might be meetings to organise, phone calls to make (phone calls will be dealt with in a later post), lots of information to sift and assign relevance to and integrate… It is simply too much stuff for the average autistic person (me!) to be able to keep on top of. It really is like spinning plates, and I can only watch one plate at once. And if there is too much going on, for me a shutdown will soon follow where I can’t do anything at all.

How to manage? Firstly, I had to accept that this is not my fault. It’s how I’m wired. Secondly, I made the decision to do the best I can with what I’ve got. Autistic people can be meticulously organised, and I can use this to create as much order as possible from the chaos. To get around my goldfish memory, I have one document in an easy to find location, with a page for each project, and every time I’ve done anything, I update it. All I do is insert a line at the top and put the date and what I’ve done, then if I’ve forgotten where I am, one quick glance will show me all my milestones. I also add deadlines and highlight them so I can’t miss them.

I swallow my pride and ask colleagues for help. If I have an overwhelmingly big task and I can’t see where to start, I will say to a colleague, I need to do x and I need some help to plan it. I did this recently, and the colleague replied, with ‘yes, that’s fine’, and I thought it was agreement to help me at a future date, but in fact they had already mapped out the whole task, as I saw when scrolling down on their email! And they had done something in minutes that I would have agonised over for hours! We had a quick chat about it, and then I had a roadmap which I could use over and over again because it’s a recurring task.

I love my to-do lists and at a coaching session I was shown how to write them as mind maps with spikes radiating out from the words ‘things to do’ or ‘T2D’ as I have now shortened it to. Tasks in a circle don’t feel as overwhelming as tasks in a list. I also love my coloured pens and pink paper – I find it easier to focus on things written in colour, and it looks cheery too.

Where possible, I do one thing at once. I know that I am bad at flitting from task to task, so I think, right, I am going to concentrate on this until it’s finished, and not be distracted until then. If something pops into my head and I am worried that I might forget it, I put it onto my calendar straight away, then I don’t have to use any mental bandwidth in trying to remember it – and it doesn’t get missed as it’s on my calendar.

There are some things that elude me – for example, taking initiative. I read that autistic people may not take initiative because they don’t know what else needs to be done. That is very true of me, but how can I know what I don’t know? I can have a checklist of what I have done before in a similar situation, but beyond that, I am lost, I try to make up for it by being super organised, and doing what I CAN do. This is where it’s really helpful to read more and more about autism, to reflect, to understand strengths and weaknesses as they affect us personally (it’s different for everyone) so that we can spend our time wisely in making strategies that play to our strengths and work around our weaknesses. And so that we can stop blaming ourselves for our blind spots when they’re not our fault.

Selective/situational mutism

I am covering topics in no particular order, just as they occur to me, and this one was quite a discovery for me. I have spoken previously about how I did a lot of reading and tried to put together my psychological landscape after diagnosis. Selective (situational) mutism was a large piece of the puzzle that I came across almost by accident, and I will explain what happened in case it is of any help to anyone else.

I had to do a viva for my doctorate, which involved doing a half hour presentation on my research. The mock viva had gone okay, but the real thing (even though being done via Zoom due to Covid) was looming larger and larger. A friend agreed to help me by pretending to be the examiner and doing an introduction to make a practise session as realistic as possible. They did the introduction, but when I needed to say the first word of my presentation…I simply couldn’t do it. The words wouldn’t come out. I had a script in front of me and the first word was ‘thank you’ to thank the examiner for the introduction, and I couldn’t even say that.

It was very frightening and also extremely bad news as without the presentation, I couldn’t do the viva and six years’ work would be wasted. It got worse, not better, the more we tried. There was a lot of manoeuvring with the university and I was allowed to record my presentation and play the recording on the day, but it was a truly shocking experience to discover that my voice wouldn’t come out, and I wondered if I was having some sort of breakdown.

I turned to my Tony Attwood book to get some answers, and came across something called selective mutism. At first I discounted it as the ‘selective’ part of it made it sound as if I was CHOOSING to do it, and this absolutely wasn’t the case. However, I learned from further sources that it was just a slightly unfortunate name, and that there is a movement to rename it ‘situational mutism’ which I feel is a more helpful description. Situational mutism means that in certain situations, a person finds that they cannot speak. It isn’t a voluntary thing; it feels (to me) like a physical block.

I thought that it had been brought on by the stress of the viva, but then I reflected further and began to realise that it was of far longer standing than I’d imagined. For example, in work meetings I struggle to contribute as I can’t process fast enough or work out how to interrupt (I will cover meetings in another post), but even when a perfect opportunity presents itself, I often cannot speak. I cannot make my voice work. I thought further back to school, to lessons when I couldn’t ask if I was stuck. I’d thought at the time that I was shy, but no – it was the same thing. And further back again…I think that I was 5 or 6 when I first experienced the struggle of wanting to say something and being unable.

What to do with this information? I always try on the one hand to be kind to myself and appreciate that it’s how my brain is wired and that there’s no blame, yet on the other hand not to victimise myself and think, poor me. I am missing some wiring, and so I make the best of it by setting myself up to succeed. Where I can, I send information in written form so that it doesn’t matter if I can’t speak. I also tell people in advance that I might experience mutism in a meeting. The very act of telling someone depressurises the situation as I know that, if it happens, people will realise what’s going on. And the less pressure there is – the less likely it is to happen. And if it does happen…I don’t make a big deal of it. I accept that it’s not very nice, but it’s how I’m wired and that it’s fine to be me.

And it means that I’ve learned a little bit more about my landscape, getting a clearer sense of who I am. Perhaps the ‘shy’ label doesn’t fit so well after all?

The joy of the spiky profile

Pre-diagnosis, I had often felt very bad about myself because there were so many basic things that I felt I failed at. I was hopeless in meetings (we will go onto that in another blog), learned certain things such as piano very, very slowly, got lost all the time, couldn’t deal with simple life events like making phone calls or coping with crowds… So every time I ‘failed’ at something, I took the average…what I mean by that is that I lumped it in with the things I COULD do, and thought, well, I must be overestimating my performance at all these other things as it’s not likely that I am brilliant at some things and hopeless at others. So really, I am probably underperforming at everything.

Then I came across another autistic person who was equally good at some things and equally hopeless at others. This person had been diagnosed five years beforehand, so had longer to come to terms with it all. In some ways, our weaknesses coincided – neither of us can cope with noise, both of us get lost all the time and we are both perturbed if schedules are not adhered to exactly. In other ways, we are different – this person can make phone calls without too much difficulty, whereas I am slightly less bad at recognising faces (while not actually being good).

We also share brilliance in our own areas. My friend is an expert in their field; I am an expert in mine, which is technical pensions. My friend is also an expert and pioneer in a hobby; I have completed a professional doctorate, written 7 novels and run a writers’ group. For the first time, I felt that I had permission to be good at some things and a non starter at others. I imagine myself as a ball with spikes sticking out of it, sort of like Sputnik. Instead of thinking that the spikes should all be the same length, meeting this other person allowed me to become acclimatised to the idea that some of my spikes are very long as I am very good at some things, while others are very short. I am allowed to be good at some things and not others. Just because I can’t assimilate what people are saying in meetings, it doesn’t mean that I can’t write an original and successful dissertation.

This revelation has helped me to be far kinder to myself. If (pre-covid) I had a shutdown outside a shop and had to go back home again, instead of thinking, ‘you’re hopeless! You are a complete failure!’ I now think, ‘well, never mind, you find shopping difficult, it’s fine, don’t worry, you can try again tomorrow’. It is okay, and not contradictory, for there to be brilliance and bewilderment in the same person. They can co-exist rather than cancelling each other out. Not being able to go into a fast food shop does not cancel out my doctorate!

It might seem obvious to a lot of people, but to me it was a revelation and an immense relief to realise that every aptitude existed in its own silo. I no longer had to be afraid of getting stuck on certain things as they did not have any bearing on other things. The pressure to perform in areas that were my blind spots simply fell away. That’s not to say that I completely give up on areas of difficulty; the difference is if I need to make a phone call and it takes me a week to work up to it, it still takes me a week to work up to it, but instead of labelling myself as bad and hopeless, and thinking that I must be hopeless really in all other areas of my life, I can now think, ‘you find this difficult, but that’s fine. It’s how you are’. It doesn’t count as ‘evidence’ that I can’t be good at anything!

I suppose that the takeaway point is to ensure that you come into contact with other people with autism by whatever means is congenial – an employer support group, a facebook group or whatever other means. It is truly comforting to find other people who are wired divergently, and to feel that there is nothing wrong with being exactly as you are.

The aftermath of diagnosis

Following my diagnosis of autism with a side helping of ADHD, I had a turbulent few weeks. To start with, I felt the elation expressed by other late diagnosed people of finally having a name for what was ‘wrong’ with me. However, I hadn’t really thought of how the next stage might play out. Once the excitement of the diagnosis was over, I found myself feeling very lost. I am not a dramatic person, but it felt as if I didn’t know who I was any more, or how I fit into the world. I felt completely adrift.

My employer had a counselling service and I tried a counselling session, but we both agreed that it wasn’t really the right thing to do. I didn’t have a problem as such that could be fixed by talking about it. The counsellor said one thing that helped – that I was still the same person inside. Instead of trying to sort out everything all at once, I started from that core point – that I was still me. I still liked horses, I still had long hair, I still ran a writers’ group. The kernel of ‘me’ was intact.

I started doing a lot of reading online about autism, downloaded various books from Amazon, joined some Facebook groups, and little by little I began to assemble a few pieces of the puzzle. (Something to bear in mind and that I will keep repeating – we are all neurodiverse, which means that we are different in different ways, so don’t worry or feel that you don’t fit in just because your experience of autism doesn’t accord exactly with someone else’s. Take the bits that work for you and leave the rest. I did read somewhere that if scans of neurotypical brains are compared, there are very strong levels of similarity, but with autistic people – we’re all different! So we are going to be good at different things and struggle with different things – in any combination or permutation!)

I read about executive function, which I’d never heard of before, and downloaded a few very helpful articles on autism in the workplace. This is the most useful guide that I found. Finally I could see why successive jobs had been so very difficult for me! The jobs had all had key components which my brain simply wasn’t wired to do. The guide listed strengths and weaknesses that nearly exactly accorded with mine, and it was good to see them written down so clearly by an expert rather than feeling that I was making excuses for myself.

It was a journey of discovery, reading, thinking, beginning to map out my boundaries, and finding Tony Attwood’s book A Complete Guide to Aspergers was an almighty relief. Here was a book written by a proper scientist in a very knowledgeable and kind way, which explained my entire life. I went through it with my sticky page markers and a pencil, marking passages that really resonated with me. It explained my childhood! It explained why my difficulties accelerated when I started growing up! Most of all, it gave me permission to be me.

So if you’re recently diagnosed and feeling bewildered – don’t worry. You are still you. Your world is like a snowstorm that has been given a good shake. It will settle, and when it does, you will be in a far better place because you will understand a great deal more about how you’re wired and how you can make the most about what you have.

The road to diagnosis

I have always changed jobs every few years because I would invariably get to the point where everything felt muddled and wasn’t getting any clearer, and I found myself in exactly the same position once again. It was a fast-moving role which required lots of subjective judgements, lots of multi tasking, lots of meetings with different people, and I felt the all too familiar sensation of sinking. However, this time I was working for a company that I really didn’t want to leave, and this time I decided to stay and get to the bottom of the issue for once and for all, rather than running again.

I started with a google search no more sophisticated than, ‘why do I always feel muddled?’ or, ‘why doesn’t anything make sense to me?’ I am not sure exactly what I was expecting to find…maybe a system for organising work so that I could stay on top of everything? Instead, I stumbled onto the stories of one or two people who had been diagnosed with autism late in life. These people said that finally, on diagnosis, their lives made sense.

I didn’t get the fundamental click at this stage, but it generated enough curiosity for me to do a few online tests for autism, and the more I looked into it, the more I saw that I fit the pattern. The idea began to take hold that perhaps my struggles weren’t all my fault. I went to see my GP who did a basic screening tests, which came out positive enough to warrant referral on for the full test; however the waiting list was two years. My employer stepped in and paid for a private test, and finally I had my answer. I was autistic – and towards the higher/worst affected end of the scale.

Tomorrow I will discuss the early adjustment period – it really is a journey and not a sudden flick of a switch from thinking of oneself as ‘normal but rubbish at certain things’ to neurodiverse.