Thursday, 23 March 2017

Disability, Spoons and Cats



Recently I realised that my elderly cat has gone completely blind. She’s probably been getting that way for some time, but for ages I mistook it for other things. When she meowed to be let in, then hesitated in the doorway, I would get impatient, thinking it was the usual cat-thing of “Oh! The door is open! Hmmm, do I want to go in or not…” Being a typical cat, in other words. But then I noticed she was blundering into furniture, and one day she fell off the deck. I’ve never seen such an expression of feline terror in my life. (She wasn’t hurt, just scared.)

Since, then, I’ve been watching her negotiating her environment, learning to feel her way to where she wants to go. It’s as if she’s saying to herself “okay, couch, couch, chair, couch, my food should be straight ahead, oops wall, okay fridge, the food should be here somewhere…” Her bowls are just a couple of feet further, but she will still deviate off course, blunder into the cupboards or stove or even the laundry, walking right past the food, and turn around a few times before finding it. Finding her way out is equally roundabout and laborious. (Yes, I do sometimes take pity on her, and take or guide her to her food, but it’s not always obvious what she wants, and I think she has to learn her own ways to where she wants to go, as I cannot be with her every minute.)

But in watching her, it’s struck me all over again just how labour-intensive it is, having a disability. Sometimes, she just gives up, and settles down for a nap, wherever she happens to be, in a corner or doorway or right in the middle of the floor. I know how that feels, when your spoons are all used up for now, and you just need to quit trying, and rest. She sleeps a lot, and so do I.

All of which reminds me of how exhausting life was when I broke my ankle and then my hand, and was in a wheelchair for several weeks. Even the smallest thing, like getting up from the couch, or fetching something from another room, took a lot of time and energy. I am fortunate, yes, as I can walk again now, but the ankle will probably never be what it was, and still gives me problems. Add in arthritis in my knees, Chronic Fatigue Syndrome and being autistic, and the simplest things can still consume a lot of my spoons. 

Take something like a simple walk round to my local shops – something most do without thinking twice about it. For me, it starts with estimating whether or not I have the energy to walk, and how sore is my ankle already, or should I drive. I’m photo-sensitive, so I have to make sure I have my cap and sunglasses. I literally watch every step I take, as any misstep will cause (added) pain. As there’s no footpath on my side of the street I have to be extra careful of some patches of rough, uneven ground. And I sometimes think – if it’s this difficult for me, how much more so is it for those permanently in a wheelchair? When I was in one, I found the most trivial things were an obstacle or a trial – kerbs that didn’t look that high, or those pretty-looking cobblestones in our town’s main street, which actually rattle the bones something dreadful.

And when I do get to, say, the supermarket, there are more challenges. Maybe it’s more crowded than I thought it would be, or I have to hold my breath walking past the seafood counter, as it’s particularly pungent today. Or I need something from up high – the strength and balance of my ankle is not what it used to be, and I have a very real fear of falling. Or they don’t have an item I need – inducing oh-God-what-do-I-do anxiety, even panic or near-meltdown. I have to negotiate all of these, all the while my ankle is hurting, my knees not wanting to take the pressure of pushing a trolley or carrying a basket, and I’m starting to wonder if I’ll have the energy to walk/drag myself home.

My life is full of daily negotiations like these. When I walk down my front steps, the ankle, knees and still-tight calf muscles and tendons mean I need to hang onto the railing. (Steps without railings now make me shudder.) Going up them is not much better. Arthritis doesn’t only cause pain, it makes the joints weaker, and so I must use extra energy to push myself up each step. My days of bounding up flights of stairs are gone. Even getting in and especially out of my car can be tricky, I have to manoeuvre so that both feet swivel through the door at the same time, pulling my bag or bags with me, all the while trying to prevent my elbow from accidentally beeping the horn! Getting in and out of bed is also a matter of calculating movements. Going anywhere is a matter of looking at what it will take, what I might face there, and so on.

Other disabled can no doubt supply their own lists of such daily negotiations, the things that consume their spoons. I have of course always been autistic, and sadly when I was younger I didn’t know why I struggled with so many things others found easy. I thought I was somehow inferior, a lesser breed of human being. 

There are many non-disabled who still think this of anyone with a disability, they think that it’s a fate worse than death. Literally. When I was younger, I leapt up steps and blithely walked for miles. When my cat was younger, she would saunter in and go straight to her food or the couch. When you’re not disabled, you don’t give such things a second thought. And so people don’t really see how often we have to, how we not only start out with fewer spoons, but use more of them in everything we do.

But having to do this, to make these constant little, or not-so-little, calculations and negotiations, doesn’t mean we’re lesser beings, or to be pitied, or scorned, or shunted aside and ignored. We’re not ‘better off dead’. We’re human beings, even with our extra trials and tribulations. We need accommodations and support, yes, but most of all we need understanding and patience from others. I have this to say to them - if we say we can’t do something, take our word for it. If we say we need to leave, don’t scoff at us. If we struggle with something, don’t say ‘It’s not that hard’. Accept our truth – because who knows, you might live it someday too, or someone close to you might.

Wednesday, 1 March 2017

Before Choosing a Therapy For Your Autistic Child... Consider These Questions



Parents of autistic children are often besieged by people recommending therapies, with all sorts of dire predictions about how their child is ‘doomed’ to an unhappy life, or ‘will always be a burden’, without this or that usually hugely expensive and time-consuming therapy. Overwhelmed, confused and frightened, parents can end up making decisions based on vague, fear-based concepts like “well everyone says you have to do this”, or “the school/professionals/whoever are pressuring me to do it”.

I want to help parents cut through the confusion, and make decisions based on common sense, rationality and what their child actually needs.

So I’ve come up with the following questions parents of autistic kids need to ask themselves, before committing to a therapy programme.

1) What are you hoping to achieve with this therapy?
Many parents are scared into thinking that the only hope for their child is to ‘normalise’ them, ie make them over into copies of non-autistic children. I’ve made no secret that I am opposed to this normalisation, and for good reason. Autism is a neurological pattern, and therapies designed to ‘rid’ us of it actually only teach us to hide it – with great difficulty, and at high cost. There are now young adult autistics with PTSD, low self-esteem, depression and other mental health issues as a result of such un-therapeutic therapy.

It’s usually pretty easy to recognise such therapies – they use catchphrases such as “indistinguishable from their peers”, or “extinguishing all symptoms”. They may even talk of “curing” or “fighting” or “defeating” the autism. Please, for your child’s sake, think long and hard, and watch it in practise, before choosing any of these methods for your autistic child. Which brings me to my next question…

2) Would this therapy be abusive if done to a non-autistic child?
If yes, then it’s abusive to an autistic one too. Forty-plus hours of intensive ‘compliance training’ a week, bleach enemas, heavy regimes of dubious and unscientific ‘supplements’, forcible suppression of every natural movement, painful and distressing eye contact or social interaction insisted on - and this is only the tip of the iceberg – what other young children have to endure this?

Sometimes people get so caught up in fighting against the autism, they overlook that the child is still a young human being, with feelings and thoughts of their own, even if they can’t express them. Let your child BE a child, let them play and explore the world in their own way, even if it isn’t what you think is ‘normal’. Don’t let their life be all about being ‘treated’, or they will get the message that there is something ‘wrong’ with them.

3) Does my child actually need this therapy/treatment?
Stop listening to the scaremongers. Put your preconceptions and assumptions aside, and take a good long look at your child. Observe them for days, even weeks if necessary, without judging their behaviour, before deciding what they truly need. You may discard some ideas, and consider others.

Some parents are prompted to try gluten-free diets for example, because “they say it helps”, when really these should only be considered if your child has obvious health issues (eg constant diarrhoea, constipation, bulging stomach, ear infections, inflamed complexion, listlessness, etc). But if your child is physically healthy, special diets or supplements are not only expensive, but useless.

4) Is this therapy suited to my child’s needs?
This is an important point. Perhaps you’ve observed your child, and realised they are frustrated by their communication problems. So you think, “oh, they need speech therapy!” But oral speech may actually be too problematic for them. They might do better with something like sign language, PECS, or some form of AAC. NEVER assume that ‘normal is best’. We autistics are different, our cognitive styles are different, and any therapy needs to respect that.

5) What approach does the therapist take?
This is another important point. Even if you’ve decided that a particular therapy would be both good for and needed by your child, the therapist/practitioner may not have the same goals you do. For example, you’ve decided that speech therapy is the right thing for your child. But while you simply want them to be able to express their needs, you find the speech therapist is more concerned with “making them sound normal”. Be very careful about not only which therapy, but which therapist you choose!

6) Does the therapist allow you to be present?
Be very wary of anyone who won’t let you watch, even through a one-way window. What are they trying to hide? What do they tell you about it? What does your child communicate about it? (And I don’t mean only verbally. A child that is obviously unhappy or stressed out after a therapy is a Big Clue.)

Make sure YOU stay in control of what is done to your child. Their welfare is at stake. A therapy that doesn’t suit them, or that has goals you’re not comfortable with or that you can see aren’t helping your child, is one to exit as soon as possible.

I hope this helps.

Friday, 3 February 2017

Autistic Hyper-Empathy and Emotional Volatility



From time to time, I’ve seen posts or links about hyper-empathy in autistics. These discuss how, far from being totally cold and unempathetic as some ‘experts’ still confidently proclaim, many of us are in fact in possession of too much empathy, and, not knowing what to do with it or how to express it, end up freezing or fleeing. Not all of us are like this of course, but from anecdotal evidence it seems a good number are.

I believe I am one of those hyper-empathetic auties. And before anyone goes “wow, she thinks she’s something special”, I want to explain that it’s far being from all lovely and roses and indigo children spiritual and so on. What in fact happens is that I’m dragged in, and often down, by others’ feelings. I’m an ‘all or nothing’ sort of person anyway, I get over-involved, and it can, and has, many a time, simply been too much to cope with or sort out, at least on the spot.

Sometimes it’s not even what they feel, but what I would feel if I were in their place. Many other times though, it is what they are obviously feeling, I take it on board as if it were my own response, and then I’m overcome by it, not able to detach myself from the situation, often still processing it long after the other person has moved on.

Also add in a measure of alexithymia, whereby I often don’t know what my own REAL feelings are, and that when I do know, they can be, and often in the past were, all over the place anyway, but frequently didn’t ‘show’ on the outside, and people would judge me for that, and then I’d get more upset… The result was, well, I would (and sometimes still can) end up something of a mess, to put it mildly.

I realised a long time ago that I needed to do something about this ‘over-reacting’ (as others called it), that my emotions were out of control, and I’ve worked long and hard over the past 15-20 years to master them. Meditation, together with a quieter lifestyle, has been key to doing this. But it’s still a fragile thing, I can still be dragged off balance all too easily.

What this means in practise is that I am still vulnerable to emotionally volatile people. I can be caught up in their dramas or crises, and lose that balance. In the worst instances, I can even take on not just their emotions but their thoughts and opinions as well. And it can take me ages to disentangle myself and rediscover my true feelings/thoughts/etc afterwards. My last relationship was a prime example of that, but it can and has happened with non-romantic connections too.

Which, as someone with Chronic Fatigue Syndrome, I really can’t afford to have happen. The stress of sleepless nights, digestive disturbances (I’m being polite here!) and the resulting exhaustion and debilitation is simply too much of a risk. Many years ago, I reached the stage of being almost bedridden with the CFS and it took me years to recover. There is NO WAY I’m risking going back to that state again. No way. EVER.

And once I realise what’s happening, the only real solution is to back away from such people as fast and as far as I can, even if I lose a lot else in doing so. I have broken ties and left behind friends. I have up and left groups, or moved house or localities even, if need be. I have undoubtedly come across as ‘cold’ or ‘uncaring’ or ‘snobbish’ or who knows what, to others who don’t understand. But I really don’t have a choice - not if I value my sanity or my health.

Please note that I am not putting down or being judgemental here of people like this. I don’t doubt others are able to keep their own calm, and deal with them just fine. I’m just not one of them. And my first responsibility must be to myself. That’s what CFS does for you – it makes you have to be ‘selfish’.

So if you see me seemingly being ‘cold’, or ‘standoffish’, or ‘unemotional’, or any of those things, know that this is not the case. I’m simply a hyper-empath with major physical health issues, trying my damnedest to stay emotionally and physically healthy. And I’m sure there are other autistics out there like me. So please, don’t make assumptions about what we’re feeling or thinking. You don’t know what’s going on underneath our ‘cold’ exteriors – or our ‘hysterical’ ones.