All posts by Ruth

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.

Guilt – the summing up

A very old friend of mine used to say, “Guilt is a wasted emotion.” I’m not sure I  can make a lot of sense out of the idea of any emotion being a waste, but she wasn’t entirely wrong. Guilt is certainly exhausting. It drives you to second guess yourself, and tie yourself in knots worrying about what other people think of you, and none of that does you a scrap of good.

Because the thing is, most of our guilt doesn’t come from within. It comes from the expectations we let other people lay upon us – sometimes the expectations that we project onto their entirely innocent selves. Guilt is heavily tied up with shame – the fear that other people will find out the terrible, secret truths about who we really are.

If your guilt is genuinely driven by the knowledge that you did a bad thing, then the best thing you can do for your own peace of mind is look for forgiveness – if you’re lucky, from the person you injured in the process. But really, whether that person exists, noticed, and is prepared to forgive you, or not, forgiving yourself is where the growth is going to be. To be able to say, “I did this thing. I should have done something else, or else done nothing at all, but I can’t go back and change it now. I choose to learn from my mistake, I choose to do my best to do better in future, and since I can do no more, I’m through beating myself up over it.” – that’s where freedom lies. Arguably, the entire theological idea of God’s forgiveness is a mechanism to allow people to forgive themselves. It’s a way of saying, “Look – God forgives you! And if it’s good enough for him, why not cut yourself some slack, too?”

But for most of the stuff we feel bad about, most of the pressures we put on ourselves, it’s really not as dramatic as that. It’s just about making your own choices about priorities – whether that’s prioritising how hard you will work, how thinly you’re prepared to spread yourself, what you want to eat at a given time, it’s your life. They are your choices. Only you can make them, and if someone is trying to make them for you, they’re wrong. Don’t let them. Your very freedom depends on it.

A guilt-free existence: Part 4: Guilt-free food

Between you and me, I don’t mind telling you that am a rather rotund person. Cuddly, maybe. What my doctor cheerfully described as “morbidly obese” a while ago. Not that she seemed to mind, except insofar as it minutely limited my contraceptive choices to the thing I would probably have chosen anyway.

I’ve always been fat, ever since I hit puberty, pretty much. I went on my first diet at the age of 13, which horrifies me a little, looking back. It, like every diet I’ve tried since, didn’t really work. I lost weight, I felt a huge sense of achievement, but diets never end, they just peter out, and when they do, the weight inevitably comes back on, usually with a few pounds more for good measure. So, I lost weight at 13, I lost it again at 22, I lost it again at 28, and then I stopped bothering. For a while I was distracted by all the small children running around my feet – the idea of organising a separate meal-plan for myself was more work than I could face. And during this time, a couple of revelations hit me, and robbed me of any motivation for dieting that I had left.

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One was that I look just like my mother. Nobody ever wants to admit that, but I do. I have her precise body shape, which makes my weight issues genetic, and much harder to fight. She, mind you, does still try to fight it. Me, not so much.

The other was that obesity is not the be all and end all. It is a symptom, not a cause, and that means that diets are really only addressing the symptom. And you cannot live your whole life on a diet – it’s depressing, and hard, and sooner or later it always goes wrong. It is a symptom that is associated with other problems, but if you are basically healthy, then being fat isn’t, by itself, a health problem. There’s certainly evidence to suggest that it’s less of a health problem than significant fluctuations in weight, and every diet I ever did resulted in a fluctuation, not a permanent change.

As a result, I resolved, some years ago, to stop torturing myself about food. I like food. I like bad food. I like food with sugar and butter and cream in it. I like pasta and bread. I like cheesecake. Actually, scratch that – I like cheese, in almost every form it comes in. I had had it with depriving myself, because successfully depriving myself was at best a temporary fix, and failing to deprive myself made me feel terrible.

I was through with feeling guilty about food. People do, after all, need to eat food, and the business of how much, and what it should be was just too nuanced for me to manage it coherently. I gave up.

If I’m going to feel guilty, I decreed, then I will choose to feel guilty about being unhealthy, rather than about being fat. I will just buy better clothes, so that fat doesn’t matter. Because by itself, fat doesn’t matter.

For a couple of years, I ate what I liked (started buying real butter for the first time in my life – and it’s so good!), didn’t put significant amounts of weight on (maybe I’m just designed to be roughly this size? I said it was genetic, didn’t I?), and focussed lots of energy on trying to feel guilty for being unhealthy, instead of feeling guilty for being fat.

That sounds kinda stupid, now.

Because, feeling bad about what you didn’t do, is pretty stupid. Celebrating achievement, that’s where it’s at. I went for a walk – Woman of Valour! I swam – Eshet Chayil!

In the last few months, I have been trying to consciously add exercise to my routine. The first time I got my dusty old Wii Fit out, and tried some jogging on the spot, I lasted about 90 seconds. But do you know what? That’s 90 seconds more than I did the day before. Eshet Chayil!

Now, having worked very hard, not out of guilt, but out of choosing a goal that mattered to me (to be physically fit, and therefore not die of heart failure at 55), there has been something distinctly galling about the fact that I have not lost a single pound. Because, I know I said I don’t care about being fat any more, but guess what? I was totally lying. I would love to suddenly and easily become a size 12, and stay that way. But we both know that it’s not going to happen, and I’m no longer interested in a short-term strategy. I am taking regular exercise for the first time in my whole life, because regular exercise has to be a part of your whole life, if you want to stay healthy. I’m not swearing off cheesecake for a fixed period, hoping to solve a problem. I am changing my routine, my expectations, my default, because I want to be healthy. I am eating cheesecake, because I want to be happy.

People have the audacity to disapprove of what others eat. It’s an extraordinary imposition, but they do it. They see the fat girl, and automatically pass judgement on the cream cake. Actually, they also see the thin girl, and pass judgement on the salad. Maybe she likes salad! Maybe she’s not eating salad because she wants to be even thinner, when you already think she’s too thin to be allowed. Maybe what other people eat is entirely none of your business!

So, I say, let’s reject other people’s disapproval. You get to be as fat or as thin as you are, and you get to eat whatever you fancy. It’s up to you. Feeling bad about what you ate totally sucks. Not least, because nothing makes you want cheesecake like feeling bad about the cheesecake. But you can never really win, that way, because no matter how many days in a row you resisted the cheesecake, the emphasis is always on the day you succumbed. We quite naturally focus on the things we do, not the things we consistently avoid doing. So diets are made of feeling bad for what you did, without much in the way of achievements to celebrate, in day-to-day terms. Weight Watchers will give you a pat on the back when you’ve lost so many pounds, but you have to have resisted a lot of cheesecake on a lot of days to get to that point.

On the other hand, feeling thrilled and delighted by the tiny bit of exercise that you did, is a great thing. It’s a way to celebrate the good. You do something, and you feel proud of it. And more inclined to do it again. It’s a positive cycle of happiness, instead of a negative cycle of sadness.

If you want to be healthier, you could try some exercise. You might like it. You might hate it, but decide it’s important to you. You might decide you’d rather take your chances – it’s totally your choice, and other people don’t get to dictate to you. But do you know what? Feeling good about something you did knocks into a cocked hat feeling bad about something you failed to resist.