Straddling the borders

A friend of mine has started a new blog on the subject of autism, and her relationship with it. She doesn’t have a diagnosis for autism – she’s in the process of trying to get one, having reached her forties, and concluded that such a diagnosis would help her to understand herself properly, and manage her life better. She has suffered from all of the hurdles that people talk about in these situations – it took two attempts to get a GP to take her seriously enough to refer her to the fledgling adult autism unit in her area, and what sounds like a very assertive presentation of opinions on the telephone to the said unit, to persuade them that if their telephone assessment returned a borderline result, then that is a case for pursuing diagnosis, not a case for dropping the process.

I don’t really know this person in real life – we met, briefly, once – but my understanding of her, based on how she presents herself online, leads me to think that she probably does have a case for diagnosis. I’m no expert, but knowing that autistic women present differently from autistic men, that they learn at an early age how to ‘fake it’ in many social situations, but live with high levels of stress from the effort of doing so, and that being a “high-functioning” autistic person doesn’t make you any less autistic, I think that if she, an intelligent person who has struggled for years, and who can search the internet at least as well as you can, thinks she might be autistic, she should at least be able to get someone to listen to her.

My dad thinks he’s autistic. He usually uses the term Asperger’s Syndrome, which, as I understand it, is just a particular type of “high-functioning” autism. I’ve known my dad for nearly forty years, and I strongly suspect that he’s probably right. He doesn’t seem to have a particular need for a formal diagnosis. He’s fairly content with the book he read on the subject, and the epiphany that came with it. Again, he suddenly understood the ways in which he had struggled for so many years. The knowledge hasn’t changed who he is, but it has given him a sense of understanding, and of accepting himself, in the face of being told he just wasn’t good enough, for so much of the time.

As well as believing himself to have Asperger’s Syndrome, he has also concluded that I have it. I was distinctly ambivalent about this idea when he first presented it to me, since I (like you, probably) like to think of myself as basically normal. But, do you know what? I’m not normal.

I’m not far from normal. I don’t necessarily think that, if I went down the diagnosis route, I would get a diagnosis. That’s how borderline I think I am. But I do have certain traits. I have difficulty in interacting in large groups, and a preference for talking to people in ones and twos as a result. I have a history of engaging rather obsessively with fiction (must collect all 62 Chalet School books, must read reams of Harry Potter fan-fiction to comfort me over having finished the actual books, must watch a TV series to the very end, long after everyone else jumped the shark because it became so bad). I can be equally obsessed with non-fiction-based hobbies – computer games which I can’t drag myself away from for weeks on end using a gaming mouse from Armchair Empire, and visiting gaming sites like mycsgoboosting.com to improve my gaming, knitting and crochet projects that are all I’m interested in for periods of time. I spent a big period of my adolescence, basically depressed by my inability to understand other people, and I have difficulties in coping with loud, shrill, or just plain busy noises. Even typing this, I find I’m in a room full of people, someone is playing music, and my senses are overloading to the point that I’m having difficulty getting my thoughts onto paper. And yet, the thoughts are filling my head too much for me to ignore them. So here I am, trying to blog in a completely inappropriate situation, and feeling overwhelmed as a result.

So, I might be slightly autistic. I certainly have some autistic traits. They come out when I’m stressed. The things that cause me stress are, often, related to the autistic traits, and the things that I consequently find difficult. The effect can be circular – things that are stressful, but generally within my capabilities, suddenly become insurmountable if my general stress levels are high. If I’m suffering from a sense of not understanding the rules, or of not being able to meet the expectations of other people, then the odds are that my ability to make a business phone call will evaporate.

The thing is, (and this is what I really came to say), I don’t believe in a mystical line. I don’t believe that all the people on THAT side of the line are autistic, require help and support, and can benefit from the self-knowledge that diagnosis offers, while all the people on THIS side of the line are perfectly normal, and need to just pull themselves together. I don’t believe it.

There are people in my life who think that talking in terms of autism, as a strategy for self-understanding, is a cop-out. They think it’s an excuse for being selfish, for being badly behaved, for not trying to put myself out for them, for just not trying hard enough. I disagree.

I don’t need a diagnosis. I don’t need someone else to tell me that the things I need to cope are valid. I already know that they are. I have learned, from life experience, and from reading, what those things are, or could be. All I really need, is to understand myself, and to be allowed, by the people around me, to make judgements for myself about what I can and cannot do. I am the person who understands me best, and nobody else has the right to tell me that my coping mechanisms aren’t good enough for them.

If you think you might be autistic (or ADHD, or anything else, really), and you think that a formal diagnosis would benefit you, then I encourage you to pursue that. Depending on whom you ask, and what you’re after, you may have to push quite hard – if it’s necessary to you, then push as hard as you need to. If you think there are tangible supports that you could access with a diagnosis, or even if you just think it would help you to understand – if, in short, it’s worth it to you, then push for it. You deserve those benefits, and I would hate for you to see me, stating that I don’t need that, as somehow dismissing you.

But much more important to me is knowing why I struggle. Which side of the mythical line I happen to fall is much less important to me, than seeing that everyone struggles with the how the world is – everyone. It’s just that the ways in which I struggle lean more toward the autism spectrum, than in any other direction. And knowing and understanding that, gives me somewhere to start in looking for strategies that will help me cope – things that have worked for other people, and might just help me to find my way through day-to-day life more easily.

Since my dad first suggested to me that I might have Asperger’s (or at least, since I first came to terms with the possibility that he might be right), I can honestly say that it has helped. I believe I understand myself better, now, than I ever have. I can see precisely why certain things cause me intolerable stress, and I can give myself permission to refuse to be in that situation. It has been a benefit to me. It has put me in control. And that is much, much more important than the process by which I got there.

3 thoughts on “Straddling the borders

  1. Thanks for posting and sharing, Ruth. I much prefer the newer way of talking about autistic spectrum disorders, because I do believe it is a spectrum. But I don’t think it starts with severe autism and end with Asperger’s, I think it continues right up into what we think of as normal. Perhaps we’re all on the spectrum somewhere, without wanting to trivialise what you’ve written. And stress definitely makes difficult situations harder to cope with. Thanks for your honesty, I think we could all do with a bit more self-awareness, like yours. x

    1. Not feeling trivialised at all. 🙂 You’re absolutely right – I often prefer to use ASD, and I’m not sure why I didn’t here. I think some people like to talk about Asperger’s because it sounds less drastic than “autism”, which covers such a broad spectrum, that people can assume it refers to quite severe disabilities, and look mystified when apparently normal people apply it to themselves.

      Some days, I enjoy the shock factor of that, though, which is probably just a bit naughty!

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