This is why…

Sorry, no images (it’s late and I can’t be bothered). But I hadn’t posted in a while and I wanted to keep up the blog.

First off, I just wanted to reassure those who were worried about my health (hi mum!): I’m still tapering off the antidepressant (down to ⅓ dose), but as far as I can tell, I’m all recovered from the anxiety/stress disorder. My nervous system has settled down and I’m not getting hyper for days or getting upset over small things like I was before, so I’m thinking my amygdala has reset back to normal, which is great !

This has freed up a bit of energy to start working with my son on some of his issues. I should have done this before, but better late than never. I won’t talk about this too much because I try not to infringe my kids’ privacy by writing about them on my blog. (The basics of it is that a perfectionism-anxiety thing related to his Aspergers has become a roadblock in the transition from school to adult life, and might take a bit of work to overcome. But better not go into that here).

So what else to write about, I was wondering? If I follow what’s been on my mind, I’m still working through a few Asperger-ish issues of my own (yes, I know you’re tired of this topic, but I can’t help it. Obsessive interests come with the territory).

So at the weekend I read “House Rules” by Jodi Picoult. This was essential reading really, on account of it being about a single mum with 18- and 15-year old kids, the elder of whom was on the spectrum. See? What choice did I have? I’m still mulling over what I thought of that book, and might come up with a review later once I’ve decided whether or not I liked it… please stand by…

Other than that, I thought I might try and give people a better explanation of where I’m at – and in particular, why I’m still a little hung up on the autism thing. Because it occurs to me that I’ve never really explained. Or not very well. So here it is…

The thing is (apart from it being my latest obsessive interest), Aspergers has been causing me trouble. It’s been causing me trouble for years, which was why I found out I had it, because I got to the point of desperately wanting to know just what the heck was wrong with me. It caused difficulties at work leading to a period of unemployment, and it seriously hampered my ability to be the mother to my kids that I felt they deserved. And now, even though I know the reason why, Aspergers is still causing me trouble because having a diagnosis doesn’t change the condition and it’s not like there’s a cure. So even after diagnosis, Aspergers has been a factor in the breakdown of my marriage, has led to me turning down lucrative job offers, and caused me to reduce my working hours at a job I love. To get where I want to be in life, I need to develop strategies to manage it effectively. It’s an on-going process.

I know this probably seems strange, because I really am right on the edge of the spectrum, and to meet me you might not notice anything too wrong. I’m just a little awkward sometimes, a little thoughtless on occasion. It looks like a minor personality thing. What you’re seeing, though, is the result of decades of coping mechanisms.

Did you know that autism actually changes one’s personality? Adjustment to an autistic brain creates particular personality traits – not exactly the same in everyone but with common features. And they change over time. Though I can only tell you how it’s worked in me…

Unlike classic autism which can be diagnosed at age 2 or 3, the Aspergers type is more commonly diagnosed at age 9 or 10. Essentially, this is because there’s no language delay (in fact aspies can have advanced vocabulary and reading ability), so it only gets noticed when social skill deficits become obvious.

Some of us manage to muddle along socially and don’t get diagnosed in childhood. For me, around the age of 9 or 10, I started working out a few things. Such as the idea that one is supposed to share things with friends. The discovery that people didn’t react well when I voiced my thoughts. I learnt to watch what others were doing and saying and copy them to fit in. At heart I’m an extrovert, you see – I enjoy the company of others and I want to have friends, I want to connect.

Probably around the same age, I also became an obsessive reader, getting lost in books for extended periods. This was the autism. It was a combination of the tendency to hyperfocus and the need to escape from a social world that was getting hard to handle. Books were also a safe way to experience and learn about emotions, acting as a primer in how to deal with them in an acceptable way. This is how autism superimposes introversion over an otherwise extroverted personality.

Another personality trait common to autistics is neuroticism. Unlike in neurotypical folk however, for whom neuroticism generally has a negative impact, in autistics neurotic traits correspond to better social functioning. I’m not making that up, there’s been a study on it. I think neuroticism is also something the autism pushes on us. We learn to go inside ourselves, to practice metacognition – much as I’m doing here – to explore why we think what we think and feel what we feel. It’s necessary to work out how to adapt and survive.

We tend to become conscientious workers, too. Some of the positive traits often quoted of those on the spectrum are reliability, loyalty and honesty. Although we can be cautious in assessing our abilities, if you can pin us down to saying we’ll do something then we’ll do it. (Well, as long as we don’t get focused on something else and forget).

I wasn’t always as conscientious as I am now, though. Again, it’s a coping mechanism I’ve learnt, because when you can’t connect with people, how else can you demonstrate your good intentions but by doing what they tell you? And when the correct responses to others’ emotional states is elusive, at least you can follow their explicit instructions. In contrast to our social lives, work becomes an important area in which we are capable of functioning at a decent standard.

So this is where I’m at. I’ve become a conscientious worker, somewhat neurotic, and am getting a reputation for being anti-social. It’s not that I want to be a recluse, but in a vicious circle, the more I drop out of society the more I forget how to be social. I’m nearly 50 and I’ve never learnt (or have forgotten) how to initiate or maintain a conversation. I’m not kidding. And the trouble is, inside, I’m still the extroverted kid who wants to have friends and to connect meaningfully with others.

This is the reason I struggle. It’s hard to break down an insularity developed over decades and allow myself to open up to people and show my true self. I even struggle to work out who my true self is. If I were to stop myself from aping others, pretending to be normal, who would I be? And if I’ve spent decades covering up my true self because of others’ reactions, dare I probe any deeper and reveal what’s underneath, or is it best left hidden? Should I accept the necessity of what I’ve done to myself, together with the cost in lost opportunities for connectedness and friendship?

I’m not finding it easy, to be honest, working through this. But whatever. It is what it is.

And that’s my explanation why.

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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.