Category Archives: Consuming

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.

Fat patients should use fat doctors

This is the life lesson I have learned, today, and which I am generously sharing with you.

Fat doctors are much more likely to get it. They, like the rest of us, have agonised about the weight loss debate, worried about the damage to their health that their BMI might be doing, have lost weight only to pile it back on again, with a little more for good measure, have hated themselves for being fat, for being unhealthy, for being unable to exercise the required self-control to magically become a thin person. It’s not guaranteed, of course, because a fat doctor can always decide to project their self-loathing onto you, and if they try that, you should seek another doctor. However, if they’ve reached a certain age, and come to the conclusion that, rightly or wrongly, fat is what they are, and isn’t about to change, you stand a good chance of discussing your health with someone who sees your body shape as a parameter, not a problem to be fixed. And that clears the way for an intelligent, grown-up dialogue about what health options ARE available to you.

The other thing I learned, today, is that if you are generally against random health-screening that doesn’t relate to the reason you went to the doctor’s in the first place, you should say so, and loudly, at every interaction. Because if I had been consulted 6 weeks ago, I would never have agreed to the liver function screening, which bore no relation to the random white blotches that had appeared on my face, and I would not now be in the middle of an investigative process to find out what is wrong with my liver, the end result of which will be, us knowing what is wrong with my liver. There is no treatment. There are no symptoms. There is no problem that we are seeking to solve. We just randomly screened my liver function, and now we know it’s abnormal, we can’t possibly resist finding out why.

That annoys me intensely. I don’t believe in random screenings. I think the medical profession – particularly at the policy level, rather than the sitting-in-a-room-with-you level – is inclined to entirely disregard the emotional toll of false positives (generally more likely if testing decisions were not risk-based in the first place), of being presented with a health “problem” you didn’t know about and which doesn’t affect you, of needing to spend your perfectly good and limited time and energy on visits to blood clinics and ultrasound labs, and so on. These things are not nothing. These stresses can actually bring a health cost of their own, though they are rarely evaluated in that way. I believe, instead, in risk-based testing. So, if there is evidence to suggest a child MIGHT be being abused, we investigate – we don’t do spot checks on every family just in case. If there is evidence to suggest that there might be a problem with my liver function, we test it. If we think my complaint might be caused by lipid deposits relating to high cholesterol, we test for that – and nothing else!

Essentially, the uncomfortable conversation I had about dieting and following a fitness program, with the previous GP that I saw, and the subsequent five weeks of worrying that there might be something seriously wrong with my liver (there isn’t), and that if there was, I was going to have to face a major confrontation with the medics regarding my refusal to attempt to lose weight, were unnecessary stresses, brought about by the first GP I saw (different one again) who took it upon herself to measure things that had nothing to do with why I had gone to see her, .

She should have at least asked me. Because that’s five weeks of stress that I could have been spared.

Format Shifting & the future of your bookshelf

Most people don’t know but in the UK it is currently illegal to put a CD into your computer and copy the music to the hard drive, it’s just as illegal to copy it from that PC onto your iPod but everyone does it all the time.

The government have realised that this is a bit of an oddity and have indicated that “format shifting” (the act of changing the media the music/video etc is on) is going to be allowed when the new copyright laws are framed. Continue reading Format Shifting & the future of your bookshelf

Publishers still trying to hold back the sea

It’s another self inflicted nail in book publishers’ coffins although I doubt they think so. France has passed the law allowing the publishers to set the price of ebooks.

Apparently “Signs are, consumers expect e-books to be priced considerably lower than physical books”. Well yes, I expect that the copy of the book that just required you to a digital copy of the book you already have should be cheaper than the one you have to send to print, bind, deliver and stock.

However unlike the music industry, I don’t think digital piracy will be the problem, self publishing will. Already self-publishing in the kindle store is make some people serious money and successful authors are moving away from the publishing houses.

The reality is, most of what a publishing house does is rapidly being replaced by the web. The cost of publishing has gone, marketing is now also much easier and cheaper, the wisdom of crowds is filtering the good form the bad and you can get yourself a copyeditor online and there are companies like san diego marketing agencies that can make the job even easier for you.

A combination of self promotion and the fact that the author gets more of the book sale, means self-published books are often among the cheapest on eBook stores and end up at the top of the sales chart.

In the mean time, heads are still in the sand, and we are trying to protect the ‘independent bookshop’ by keeping the price of the digital copies artificially high.