‘Anxiety’ is the Wrong Word

Something interesting happened to me this week – I had a 2-day long anxiety attack.

Which I guess is not something  one would normally write about in a blog, but in fact, once you remove the fear of judgement (and get over the self-absorbed ‘why me?’ thing), it’s actually quite a fascinating phenomenon. And I wanted to share because it made me realise how many misconceptions I had (and presumably lots of other people have) over the topic.

First off, I did not equate what was happening to me as ‘anxiety’ at all.

To me, anxiety is that feeling somewhere between worry and fear that precedes an event you are dreading. That kind of anxiety serves a useful purpose – it makes you just uncomfortable enough to knuckle down and do what you need to do (e.g. revise for that exam, practice for that interview, etc.). Or it makes you so uncomfortable that you realise you’d be better off avoiding the dreaded event altogether. I know that feeling.

This was something different. The way I would describe it is having a nervous system in hyperdrive. Everything was amped up to the max, like switching to a more powerful battery. My thoughts were faster, more repetitive, and loud enough to miss half of what people were saying to me.  Talking came easier than usual, though – faster and more impulsive. I had an intense need to keep moving (tapping my fingers, jiggling my knee, springing up and going for a walk), to release nervous energy. I felt myself starting to sweat. If someone had touched me from behind I would have jumped out of my skin. That first night I barely slept, but the next day I wasn’t drowsy – I was still wired.

It could almost have been fun, except that I was at work and I could have done without having my colleagues see me in that state, agitated and jittery. Would they think me a nervous wreck? And yes, when your thoughts are circulating, repeating, escalating, the smallest of negative thoughts can become a monster. A minor frustration expands until it truly feels like the end of the world. I didn’t get as far as a panic attack, but approached too close for comfort.

I wouldn’t have called the experience anxiety, though, because that’s putting things the wrong way round. It wasn’t anxiety causing physical symptoms, it was the physical symptoms – the hyperarousal of my nervous system – that was causing small anxieties to escalate.

Do you see the distinction? It’s important, if you’re thinking about treatment, because confusing the two types of anxiety might make you think, for example, that counselling sessions of the ‘talk about what’s worrying you’ kind are going to help prevent this kind of attack. They won’t.

So what was going on?

When I tried to explain to someone what was happening and they mentioned anxiety, my knee-jerk reaction was to deny it was any such thing. But then, being me, I googled it to check. Did what was happening to me match any type of anxiety disorder? Here they are:

Generalised Anxiety Disorder (GAD) – excessive, uncontrollable worry about a range of ordinary situations like health, work or finances? Nope, this was an acute attack not a chronic condition. That doesn’t fit.

Social Anxiety Disorder (SAD) – avoidance of social or performance situations for fear of being embarrassed or rejected? We-ell, I had considered this in the past to explain my difficulties with social interaction, but then I realised I had the letters the wrong way round; not SAD but ASD. So, no.

Panic disorder – associated with regular panic attacks, which are sudden, intense episodes of irrational fear, shortness of breath, dizziness and other physical symptoms? Not that acute, no.

Obsesssive Compulsive Disorder (OCD) – unwanted thoughts and impulses (obsessions), causing repetitive, routine behaviours (compulsions) as a way of coping with anxiety? No. Well, OK, I did mention repetitive thoughts but I’m pretty sure that’s the ASD again.

Post-Traumatic Stress Disorder (PTSD) – a group of stress reactions that can develop after witnessing a traumatic event. Symptoms include (1) Re-experiencing the trauma, (2) Avoiding reminders of the event, (3) Negative changes in thoughts and mood after the event, (4) Feeling ‘on edge’ and overly aroused? Well… yes. Number 4 would fit. Except that I haven’t been in a situation traumatic enough to produce PTSD.

One thing I was pretty sure of was that however one might label this attack, it was related to ASD. Certainly it had the usual hallmarks of being bizarre, nonsensical and inexplicable. Truth be told, it’s happened a few times before, though I was less aware at the time, and it seems to be a cyclical thing, with an acute incident every few weeks.

All my internet searches were telling me was that autistics are at increased risk of anxiety. But what kind of anxiety and why? Googling was getting me nowhere; I couldn’t find a single site that could offer an explanation that fit.

And I really, really wanted to know, with all the existential angst triggered by thoughts such as: “Why is this happening to me now, when I never had a problem before?” And “Oh shit, is this going to get worse?”

And then I found something, in Temple Grandin’s book “Thinking in Pictures”, and I realised why the author is held in such high esteem; she has remarkable self-awareness and insight. Though my few attacks have been blessedly brief and mild in comparison to the levels of anxiety she’s dealt with her whole life, I recognise the same underlying mechanism at work:

“…I started living in a constant state of stage fright, the way you feel before your first big job interview or public speaking engagement. But in my case, the anxiety seized me for no good reason…”

“I now realise that because of the autism, my nervous system was in a state of hypervigilance. Any minor disturbance could cause an intense reaction. I was like a high-strung cow or horse that goes into instant anti-predator mode when it is surprised by an unexpected disturbance.”

“I figured out that my nerve attacks came in cycles… I also knew from past experience that the attacks would eventually subside. The first relapse occurred during a new equipment startup at a meat plant. Stress can trigger a relapse. I just toughed out the nerve attack, and it finally went away….”

“I realised that I often had periods of several months when my anxiety was quite low, and then suddenly a panic attack would flip a metabolic switch and my nerves would go from a tolerable 75 mph to a horrible 200 mph. It would then take several months for them to subside to 75 mph. It was like switching the speed on an industrial-strength fan by pushing a button. My nervous system instantly jumped from a brisk breeze to a roaring hurricane.”

“Dr Jack Gorman and his associates at Columbia University describe a process called kindling, which may explain such sudden increases in anxiety. In kindling, repeated stimulation of neurones in the limbic system of the brain, which controls the emotion centers, affects the neurones and makes them more sensitive. It’s like starting a fire in kindling wood under the big logs in the fireplace. Small kindling fires often fail to ignite the logs, but then suddenly the logs catch on fire.”

“Most of my problems were not caused by external stresses such as a final exam or getting fired from a job. I am one of those people who are born with a nervous system that operates at a perpetual state of fear and anxiety. Most people do not get into this state unless they go through extremely severe trauma, such as child abuse, an airplane crash, or wartime stress. I used to think it was normal to feel nervous all the time, and it was a revelation to find out that most people do not have constant anxiety attacks.”

Funny how much more insight one can get from reading the personal account of one sufferer than from any number of internet articles. Makes me think, you know, for all the scientists who are studying autism spectrum conditions, they seem no closer to getting the full picture than I am to producing the Unifying Theory of the Universe.

Oh, and if reading Ms Grandin’s words makes you concerned for me, don’t be. Unlike Ms Grandin, I wouldn’t say I feel nervous all the time or live in a perpetual state of anxiety. The occasional high-jinks of my nervous system have been little more than an inconvenience.

Anyhow, I do have two thoughts from all this.

The personal one is that, thanks to some stressful life events combined with my ASD, I seem to have developed an intermittent (and hopefully temporary) nervous condition with similarities to PTSD. Lucky me!

My other thought is that, if this kind of attack is what is meant by autistics being prone to anxiety, I think that ‘anxiety’ is the wrong word. Or at least, it is woefully inadequate to describe what’s going on. Wouldn’t it be better explained as autistics having a more sensitive nervous system, so that sometimes a seemingly minor trigger can lead to a prolonged state of hyperarousal, including heightened levels of anxiety?

If you have to reduce it to a label, call it autistic hyperdrive. That sounds so much cooler.

 

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Positivity as a Social Skill

Well, still no novel writing going on here. It’s been a difficult few weeks for me, bordering on traumatic if I’m honest, but I’m not ready to write about that yet, I’m still processing it all. Still, I wanted to write something here because… I dunno… it seems silly to have a blog and never write anything in it. So here I am.

This is my effort at a bit of pop psychology, another post related to Aspergers. Not really sure why I wanted to write it. Maybe just to understand myself better, or help you guys understand me, or in a roundabout way help you understand yourselves, from a neurodivergent point of view.

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So, it happens sometimes that I’m talking to someone and their manner towards me changes and I have to think back to what I’ve said and try and work out how I’ve offended them, or what it is about my words or my manner that’s turned them off. Actually – scratch that – it doesn’t just happen sometimes, it happens a lot.

I can often work out what I did wrong, given the time and space to think about it. Too late, of course, to change that person’s perception of me; and without much hope that my no-longer-particularly-plastic brain will adjust enough to avoid repeating the mistake next time, all I can do is get frustrated with myself.

One of the mistakes I make is to be overly negative. Yeah, just like that ^^

From what I’ve read, negativity is a pretty common problem among those on the spectrum. Together with literal thinking and too much honesty, negativity and a pessimistic attitude are probably what cause us so many problems in job interviews and the like. These are behind our (perhaps justified) criticisms of previous companies/ bosses, our cautious assessment of our own abilities and ready admission of our faults.

So I’ve been mulling over why. That is to say, I’ve been thinking about why I tend towards negativity and how that ties in with my own personality, on the assumption that it might be similar for others. Let’s explore a few hypotheses:

  1. We’re a bunch of miserable depressives

Maybe this is how it seems to others, but no, I’m not buying it. It can’t be the whole truth because when people call me out for negativity, it usually comes as a surprise to me. Generally speaking, when I made the negative statement I wasn’t feeling particularly miserable or blue, nor was I intending to be that kill-joy who ruins the mood and gets everybody down. It’s actually rather upsetting to realise that’s the way I’ve unintentionally come across, when I was just trying to make conversation.

Admittedly, they do say depression is a common co-morbid, but not all of us are sufferers. People just mis-read us when it comes to mood, as they mis-read us in so many ways. There has to be more to it than this.

  1. We deal in truth and logic

For reasons that I won’t go into here, many of us keep our emotions dialled down to zero. (Incidentally, this is why we can have trouble making decisions – because we’re trying to work through all the variables using only facts and logic, without the moderation of feelings). It also means that when we talk to you, we’re likely to favour statements of fact.

In that millisecond before an utterance passes my lips, my mind runs through a checklist, something like this: Is this statement true? Or does it fit with the available facts? Is it justifiable? Can it be logically implied? What others take as a pessimistic comment may be, for me, a simple statement of the facts as I see them.

  1. We can’t foresee people’s reactions

Running through that mental checklist takes time, and people don’t want to wait forever for me to speak, so I might not finish the list. Sometimes you just have to say something, anything, before they decide you’re cognitively impaired or mute. So I might not get as far as asking myself “Is this statement appropriate in the circumstances?”

And because my emotions are dialled down to zero, I might not think to make another important check: “How is this statement going to make people feel?”

Hence you get James Damore pointing out to Google that women are less able than men to work in tech. The poor guy had the double Asperger whammy of taking Google’s freedom of speech policy literally, and no understanding that such comments, however logically justifiable, are bound to offend.

And you get me, just trying to make friendly conversation, saying something which fits my idea of truth but is implicitly (or even explicitly) critical, of others or myself.

The trouble is, people don’t want to hear uncomfortable truths; they want to feel good about themselves and about what they’re doing. They’re not going to continue a conversation that makes them feel awkward. If we want a favourable reaction, we have to make our interactions positive and uplifting.

So how to people do it? This whole positivity thing?

My argument is that I’m just as positive as anyone else on the inside. Maybe even more so. The issue is one of communication, of displaying that positivity externally by communicating in a socially acceptable way. Hence my argument is that positivity is not only a mindset but also a social skill. And social skills can be learnt, in theory.

I say “in theory” because I’m a little cautious, nowadays, in assessing my ability to improve my social skills. I guess years of trying and failing have taken a toll. It’s tempting to just give up.

So when I read this paper on the value of learning to reframe negative statements more positively, my first thoughts were cynical. It’s hard to believe such a simple technique, learnt over a few 10-minute sessions, could have long-term beneficial effects.

https://www.researchgate.net/publication/281761886_Using_Reframing_to_Reduce_Negative_Statements_in_Social_Conversation_for_Adults_With_Autism_Spectrum_Disorder

But perhaps I should re-phrase that:

Experience has made me cautious about the benefit of social skills interventions, but what do I have to lose? This reframing may be worth a try.

 

Always a Reason

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What the hell am I even doing?

That was my thought as I sent an email to work, requesting a special consideration for my ASD.

Just WTHAIED?

Considering I only just got the permanent job and am still on probation, it felt stupidly impulsive. And I can be impulsive, I’ll be first to admit that, but I’m pretty sure I’m not stupid. Yes, okay, I now accept that I have a developmental disorder, that I might not be quite up where I should be on a social and emotional level, but I’m not stupid. There’s always a reason.

This one dates back 5 years. Being a ‘live-in-the-present’ sort of person, I rarely think back to the past and have a terrible memory (probably atrophied from lack of use 😀 ), so I can’t recall exactly what happened. All I know is I took time off work because I’d lost the ability to cope, I was burnt out. And what I do remember was not understanding how that could have happened, because I actually enjoyed my job, I liked my colleagues, and I wasn’t under a particularly heavy workload – it just made no sense whatsoever.

Now, after reading about others’ experiences with autistic burn-out, the picture is clear. This is what happens to those of us who remain undiagnosed by mid-life, the ones with mild traits, who’ve learnt to mask their difficulties and live a normal life. Normal activities for others can be uncomfortable for us, they create a little extra stress. Over time, it builds up. Maybe I’d just been juggling too many projects, going to a few too many client meetings, maybe I’d lost my head altogether and attempted to engage in verbal negotiations. Repressed autism demands payback.

Well, now I have another job, and I’m enjoying it even more than the last. The work is right up my street and my colleagues are great. I felt comfortable enough to disclose my ASD to my line manager and his reaction was just like my parents, a non-plussed: ‘but there’s nothing really wrong with you, is there?’ Which is good, because that’s where I want to be at, and how I want to be perceived.

Except…

Sitting there at the back of my mind is fear. Not fear of how I might be perceived, it’s greater than that. It’s fear of losing it all – the job, the colleagues, my self-esteem, everything, through another burn-out. I’m willing to do just about anything to avoid that.

So what can I do? I figured the only way is to increase self-awareness of my limitations and do my best to stay within them. I need to recognise the situations that cause me stress and instead of just “sucking it up” as I would have in the past, I need to learn how to avoid them. I have to stop pretending I can do the same as everyone else without consequences. Basically, I have to loosen up my self-control and allow myself to be more autistic.

So that’s why, when something at work was bothering me, when I was put in a situation which I felt I should have been able to handle – which anybody else would have been able to handle – but which was actually stressing me out, I gave in. Well, I tried making it a suggestion. Then I tried outright asking for what I wanted. And when nobody was getting it – because how could they? It wasn’t a problem for anyone else – I sent an email essentially saying, ‘I’m on the spectrum, this is an issue for me, and I need your support’.

It felt bad, having to do that. ‘Uncomfortable’ doesn’t even begin to describe the feeling, the uncertainty and vulnerability. The trouble is, I know how bizarre this must seem to others, that someone who seems to be normal and capable might suddenly start claiming to be autistic and in need of special treatment. Too weird, right? It wouldn’t surprise me if they start thinking me to be – I don’t know –  self-serving? Attention-seeking? Mentally unstable?

But this is what it is to have ASD, isn’t it? Being Asperger is to be chronically misunderstood. We do things that are perceived as odd and defy expectations. What people don’t understand is that, just because we have trouble expressing why we do what we do, just because it makes no sense in their eyes, doesn’t mean there’s no reason.

There’s always a reason.

ASD and Acceptance

So, it’s been a while. I’ve been a bit distracted over the last 3 months or so, getting my head around the concept of being on the autism spectrum. Not because that’s changed anything about who I am, but because it’s forced me to confront a few uncomfortable truths about myself, which had never before been at the forefront of my mind.

Right now, I really want to stop thinking about it, to ‘get over it’ and get back to more productive pursuits (like writing, yay! – Thanks, Alison, for reminding me how much I enjoy even talking about writing). But I’m feeling like I need one more post on the topic of ASD. Maybe just to set down some of what I’ve learnt, and to get things clear in my head, so I can move on. So here are my thoughts. Oh, and this is going to be a long one, I’m afraid… and mightily self-absorbed. More like an essay than a blog post (you have been warned).

So, first off, how did this happen? How can someone go their whole life without realising they’re on the autism spectrum?

I think it’s because, in the past, I had little self-awareness of the sort that lets you see yourself as others see you. In my teens, I was pretty much oblivious to my own social ineptitude, chalking my mistakes up to immaturity. In my twenties, I read about the concept of emotional intelligence, EQ, and realised I had a deficit, but still thought I was capable of change. In my thirties I was having babies and emigrating and was too busy to think about anything much.

It took me forty-odd years to get to the point of realising that, not only was I failing to behave towards others the way I thought I ought, the way everyone else did, but there were limits to how much I could change that, however much effort I put in or however many years’ experience I gained. Maybe I needed those decades of trying to be like everyone else and not quite succeeding to recognise that if I hadn’t outgrown my limitations by then, I probably never would.

So that’s how I came to the realisation that there was a hard-wired difference in my brain. When Aspergers ticked a lot of boxes, that led me to seek a diagnosis. But to have it confirmed, well, the effect on my psyche was unexpected. And, well, kind of brutal.

I guess I thought it would be a relief to know – and yes, it was. For a while. Until I started reading about ASD and consciously noticing my own behaviour. Like noticing how truly inept I am at explaining myself verbally (or, horror of horrors, over the phone). Like at the Spec Fic group, when we’re given a writing prompt, noticing how others can write a story off the top of their heads and I… well, I just can’t. And realising that the reason I clash with my Director at work is because he has a top-down thinking style (decide on a solution and design towards it), whereas mine is an autistic bottom-up (gather data, analyse, and see which solution pops up). And however much I ought to know the importance of not disrespecting one’s boss, I can’t bring myself to see his way as right. And, worst of all, I can’t stop myself from telling him so.

Is there anything I can do about any of the above? No, not really. This is what makes it autism and not just learned character traits – these behaviours are basically out of my control.

So… yeah. I think I’ve discovered autistic frustration, too.

On the other hand, the more I learn about ASD, the luckier I feel. It’s such a wide spectrum in terms of the severity of traits, whether mind-blindness or executive dysfunction or hypersensitivity, and factoring in co-morbidities, in all respects I’ve been incredibly fortunate. Aspergers is so much easier to deal with than classic autism, and with a decent IQ and no learning difficulties or sensory sensitivities to speak of, I’ve had it remarkably easy.

Even amongst those at the mild end, it’s sobering how much a minor brain difference can potentially affect their lives. There are some shocking statistics out there about levels of anxiety and depression amongst those on the spectrum. And long-term unemployment rates are horrendous. They’re so really, truly, awful, that I’m furious at the injustice of it, with a passion I haven’t felt about anything since I was an undergrad.

Seeing how much easier my life has been compared to others on the spectrum, sometimes I wonder if I haven’t got it all wrong, that maybe what I’ve got is not the same thing at all. But then I start interacting with the people in my life and I start noticing my own thought-patterns and behaviours (because once you start it’s hard to stop), and, yep, it’s clearly the same thing. How it affects people, though, is… well, it’s complicated.

I’ve been reading a bit about ASD and there’s a particular book that really made an impact on me. It’s called “Autism and Asperger Syndrome in Adults” by Dr Luke Beardon, and in it is presented a simple principle:

Autism + Environment = Outcome

In other words, the inherent severity of autistic traits is only part of the picture.

Summarising the concept in my own words, if one accepts that autistic people think and experience the world differently to neurotypicals, and that most social environments have been set up by and for neurotypicals, it’s hardly surprising that an autistic person might feel out of their element and suffer stress and anxiety.

In the sphere of work, for example, there might be a role that would be perfectly suited to an autistic person’s talents. But with recruitment practices relying on networking and multiple interviews, with HR staff acting as corporate gatekeepers, and with the modern emphasis on communication skills, flexibility, and teamwork, that person is unlikely even to get through the door.

But I’m digressing. As angry as I feel at the employment situation for those on the spectrum, what I was trying to say is more general, related to the environmental factor.  The reason I’ve had things so easy, I believe, is not only the mildness of my traits but also having been brought up in a favourable environment.

My parents had a lot to do with that. Looking back, they were amazingly tolerant – I never, ever, felt that they were disappointed in me, or they might have wished for a daughter with a more conventional personality. As a child, I felt loved unconditionally. With all the self-esteem issues that go along with ASD, that has to be the greatest of gifts. Somehow, the way my parents brought me up has given me a deep sense of security and a belief in the inherent goodness of other people.

Later, when I started out at work, my colleagues were also remarkably tolerant. In hindsight, engineering was a good choice. I was working with smart, well-educated people, who were secure enough in their own worth not to engage in bullying or passive-aggressive behaviours. If you can forgive a (slightly sexist) over-generalisation, the fact that most of my colleagues were male may have contributed to an environment that was less attuned to social mis-steps. These were guys who understood the value of cutting out the gossip and getting on with the job.

Because of my parents’ acceptance of a quirky daughter, I survived to adulthood without major issues. Because of colleagues’ acceptance, I’ve maintained employment for most of my life. And because of my husband’s (somewhat begrudging) acceptance, I get a certain amount of leniency with my behaviour at home.

I like to think this goes both ways, and an accepting environment for me has benefits for others. It gives me space to do what I do, to use my talents. At work, apparently my ability to focus exclusively on a task for hours on end is an autistic trait, too, but of the good variety. There are odd little things I seem to find easier than others, like looking at a roadside slope and sketching it more-or-less to scale, like picking out landslide hazards faster. And in writing groups, does ASD have something to do with my ‘feel’ for stories – my quick grasp of plot patterns, and keen eye for errors? Probably.

So, when it comes down to it, I’m not complaining.

I guess what I’m saying is all about the importance of acceptance. While I know I’ve been incredibly fortunate in having ASD in its mildest form, and having the intelligence to adapt to it, that’s not the whole story behind my relative success in life. And while I know life is incredibly tough for those facing the challenge of the more severe forms of autism, I’m inclined to believe this principle holds for them, too. That is, that everyone has the potential to develop skills that are useful to society. To give those skills space to grow means creating environments that in which the person’s worth is recognised and respected, they are loved unconditionally, and above all, accepted.

Yeah. That’s all I wanted to say.

The Square Peg

This post is going to branch off a bit from my usual topics of writing, book reviews and so on, and into a personal concern. This is more to get things off my chest than anything else, so basically I’m writing it entirely for my own benefit, but I guess it might be somewhat enlightening for people who know me.

Diving straight in at the deep end, what’s been on my mind a lot recently is that I’ve come to believe (or very strongly suspect) I’m on the autism spectrum. Or more specifically, that I have what used to be known as Asperger’s Syndrome.

Obviously if I do, it’s pretty mild, considering I’ve got to this stage in my life before realising what the issue was. And when I mention this suspicion to people, and my desire to get a formal diagnosis, the general consensus is: “it’s just your personality, Kay” and “does a diagnosis matter”?

I can see their point, and yet I feel that a diagnosis does matter, it matters a lot. The difficulty I’ve been having is in explaining why, even to myself.

So I’m going to have a crack at it. Let me put it like this:

Imagine, hypothetically, that you’ve always had difficulty getting up in the morning.

It’s a common problem, right?

So what do you do? You might be careful about what time you go to bed and how much sleep you get. You might set alarms on your watch and your phone and your clock/radio. Thanks to these, you manage to drag yourself out of bed and get to work on time.

The trouble is, every day you feel tired, so very tired. You wonder how on earth everyone else manages to look so bright-eyed and alert. You wonder why it is that you collapse in exhaustion when you get home and other people still have the energy to go out. It doesn’t make sense.

Eventually, you start getting the picture. You’ve tried everything you can think of to stick to the same schedule as everyone else, to fit in with other people’s timetables, and still you struggle. So maybe this is just the way you are, the way you’ll always be. You just have to work around it.

So you ask your boss to let you start later in the day, making up some excuse about needing to take your kids to school. Because how can you tell him that you simply can’t get out of bed in the morning?

You ask your husband to take over evening chores, so that you can concentrate on your supposed “health routine”. Because how can you tell him you’re just too tired, even though he works longer hours than you?

And all the time you feel guilty and inadequate that you struggle to cope with such a simple thing as getting up in the morning, which everyone else takes in their stride. And you worry over how many allowances your boss and your husband are willing to make.

Then you discover there’s a recognised disorder called “sleeping-late syndrome”, which fits your situation perfectly, which explains everything.

Would you seek a diagnosis?

Okay, so obviously, autism spectrum has nothing to do with sleeping late (I just enjoy thinking in metaphor). But the fact is that the issues that affect people with mild autism are, to a certain extent, issues that everyone has to deal with. So an autistic person has difficulties with social interactions, but doesn’t everybody, sometimes? So we’re bad at remembering names and faces. That’s not so unusual. So we might get overwhelmed in noisy, crowded places, but why not just avoid them? On the face of it, these issues don’t seem like a big deal. And therein lies so much misunderstanding.

Unfortunately, these seemingly minor issues can actually have major consequences. Because what you don’t see is the amount of effort even a mildly autistic person is putting in, every day, to function in society at a level which would be considered ‘normal’. There’s constant pressure to perform in a way that goes against their nature, just to fit in.

And what you may not be aware of is that every day a person with Aspergers walks the edge of a precipice. It only takes one inappropriate comment in an important meeting to lose that job. It might only take one ill-judged remark to wreck a friendship, or one serious meltdown to destroy a marriage. It’s all too easy for an autistic person to find themselves both jobless and socially isolated.

A presentation I saw on youtube by Michelle Vines (author of ‘Asperger’s on the inside’) made a lot of sense. She said that autism is a classic case of the square peg in the round hole. This rang a bell with me, because I feel as though I’ve spent much of my adult life being that square peg and trying to hammer myself into that round hole.

A few years ago, after coming way too close to a breakdown, I finally recognised how much stress being ‘normal’ was causing me. I threw away the hammer. No more forcing myself into situations that made me uncomfortable.

Unfortunately, that didn’t work well at all, because when you’re married with kids, you have responsibilities which mean that retreating into one’s autistic comfort zone is simply not an option.

Basically, I was stuck, halfway in and halfway out of that stupid hole, unable to hammer myself further without breaking, and unable to retreat.

Realising I’m (probably) on the autism spectrum has been a relief. Now I understand that however hard I try, my autistic brain is never going to be completely compatible with ‘normal’ expectations, I’m in a better position to accept my hard-wired limitations.

While I have no intention of using ASD as an excuse for the worst of my behaviour (and I hope people will give me a kick up the backside if I try), maybe I can ease up on the feelings of guilt and inadequacy when I do get things wrong.

Which is not to say this awkward peg can never get through that hole. Here’s how I imagine having a diagnosis would help:

  • It would allow me access to the Asperger community. Already, from reading about the way others on the spectrum deal with the same issues I have, I can see positive changes I can make in my life – and this time they’re changes that work with autistic traits and ways of thinking, rather than against them.
  • It’s belatedly occurred to me that sometimes I ought to ask for help. When I do so, if I have a diagnosis, I’ll finally have a way to explain the true nature of the issue, without being met with a dismissive “doesn’t everybody feel like that sometimes?”
  • Hopefully, I might get help that works for me, rather than being presented with solutions based on neurotypical expectations. And if that means sometimes asking society to adjust to my needs, instead of the other way around, so be it.

Maybe, by getting a formal diagnosis, I’ll be able to swap that hammer for a chisel, and start reshaping that round hole into a square.

 

(Of course, I might not get a diagnosis at all, but that’s another topic for another day…)