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, 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, 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.

MPs pay: get the facts right, please

If you like it would appear most MPs don’t have the time / inclination to read the Independent Parliamentary Standards Authority (IPSA) report into MPs pay, you should at least get an idea of what it (not the press) says.

It’s not 11% pay rise it’s 9.26% yes it’s high but lets get the number right – the pay rise happens in 2015 – and between now and then MPs are getting a 1% pay rise a year anyway – so in 2015 values they go from £67,731 to £74,000

The recommendations are cost neutral to the taxpayer (so overall they are not getting more money) – while the headline pay is going up, MPs will lose out on the payments they get when they leave parliament, what they can claim (they won’t be able to claim evening meals for example) and their pensions is being downgraded significantly to be more normal.

Once it’s implemented MPs pay will be linked to average earnings - So this shouldn’t happen again.

IPSA were asked to fix a problem and they have – they have looked at where MPs wages should sit in relation to other jobs, removed some of the rouge payments around the edge and have set out a way for this to remain fixed into the future.

You can agree or disagree with the levels and how but you should probably understand how they reached the numbers they did.

The biggest argument I can see for not paying MPs this money – most of them blatantly haven’t read or understood these reports and that in my opinion raises competency issues.

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.