Failing the Acceptance Test

Yeah, I haven’t been blogging. To tell the truth my mental health hasn’t been the best recently. Which makes it hard to be interested in anything much, except trying to work out why, and what to do about it. I resent how introspective that makes me, how self-absorbed, but that seems to be the nature of the beast. Besides, how else do you battle an invisible monster but by throwing a bucket of paint over it? So everything (and everybody) gets shoved off to the side, just to find enough headspace to function at a basic level, and work out what else I can try.

One thing that’s become apparent (and I think it’s worth exploring enough to write it down) is that for all I’ve said about autism acceptance, I haven’t truly accepted my own. And therein lies the problem. Let me explain…

It was a field course for work that finally opened my eyes to the connection between AS and my mental health issues – stretching myself too far to overcome the one plainly and directly resulted in the other. It was a painful sort of Eureka moment. So here was the answer, the reason for my struggles: the strategy of pushing through autism issues and striving to do the same as everyone else, which might have worked OK when I was younger, is simply not working for me anymore. It’s making me ill. I can’t keep doing that to myself.

But. But. But.

You see, now I have a problem.

If I’m correct, the only way to maintain good mental health is going to be acceptance of some very uncomfortable truths. Not truths I want to take on board at all. When you read the below, humour me and try putting yourself in my shoes. How would you feel if you were forced to…?

  • Accept that, however late you came to the realisation of your AS, and however great the differences you see between yourself and others with the same diagnosis, however ‘normal’ you consider yourself, there was no mistake. Let’s face it, you would never have sought a diagnosis if AS hadn’t been causing you a whole heap of trouble. It’s impossible to ignore something that has fucked up affected your life so comprehensively.
  • Accept that, while AS might not get worse over time, your ability to deal with it (work around it, compensate for it, and generally pretend it does not exist) has been heading downhill for years. Will probably continue on this trajectory. Pleasant thought, right? In trying to live your life the way you want, regardless of your AS, you’ve bargained away your mental health – and it’s not worth it.
  • Accept your limitations. Which is so much easier said than done when your limitations seem so elastic, and you remember stretching them in the past. This means deliberately not doing things you want to do, know how to do, have successfully done in the past, because there’s going to be a backlash. It means accepting you have a disability. Because however much you want to get out there and live your life entirely on your own terms, you know what’s going to happen when you try and it’s not worth it.
  • Accept that you’re going to have to get smarter about managing the condition. This means planning ahead and forecasting which situations might be difficult. It means accepting the need to tell people enough to get their help in overcoming hurdles, or taking them down. Because (have you accepted it yet?) you have a disability. The alternative is to avoid difficult activities entirely, and be seen as lazy, irresponsible, antisocial, self-absorbed, incapable, unreliable.
  • Accept that other people are not going to understand (however much you try to explain). It’s impossible for them to comprehend how something so basic and obvious (for them) can be so confusing or overwhelming or traumatic (for you). And when you push beyond your limits and they want to know why you’re ill, you’ll have to keep on calling it depression, or an anxiety disorder, or a stress disorder, or whatever seems to fit in the moment. Officially, autistic burn-out does not exist.

I never know quite how my posts come across, but if you’re getting an angry vibe from this, you’re spot on. Being forced to face up to the above points is seriously pissing me off; it’s not something I ever thought I’d have to do, and I resent being pushed to this point. In modern parlance, it sucks big time.

So yes, I’m all for autism acceptance in general, and I’d surely accept the condition well enough in others. It’s just when things get personal that I fail the acceptance test.

 

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.