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.

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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…)