The House of Autism

I was going to write a sign, print it out, get it laminated and stick it to the front door. It was going to say “Welcome to the House of Autism. If we’re all fully dressed and eating with cutlery”… and then I realised I couldn’t finished the sentence because this has NEVER HAPPENED.

Someone once called my children ‘feral’, and in some ways they might have been right. They sometimes do look that way. All of them, and also The Husband, prefer not to wear shoes or socks. Bare feet are best, although socks are more bearable than shoes. Shoes without socks can be an allowable compromise. The younger two sons often get too hot and take their tops off. They prefer not to wear coats unless it’s freezing cold out, and often not even then.

They rarely eat with cutlery unless they need to actually cut something up, or it’s very messy food, in which case they will grudgingly and rather clumsily use a spoon. Middle son eats non-food items – plastic, cardboard and metal, mostly. Youngest did that a few times, until he ended up in hospital with a pound coin lodged in his oesophagus. It didn’t just go through and come out the other end (what usually happens if it’s a marble or a penny, apparently). He had to have a procedure under a general anaesthetic to extract it, and a two night stay in hospital.

They make dens – endlessly, creatively, sometimes inappropriately (that is, outside of our home and using materials that belong to other people). They like to squeeze into small places, hide behind doors and in cardboard boxes. They barricade themselves into rooms and areas and disappear into the world of tablet or phone or computer. The younger two much prefer to sleep in sleeping bags than under a duvet.

They play outside, sometimes in the same places as other children, and sometimes they even look as if they’re making friends, but if someone gets into their space, they lash out. They have occasional violent tantrums for what look like trivial reasons, destroying bits of the house and sometimes self-harming too. All of the children have been sent to the school Heads on several occasions.

I worried about all of this for a long time.

I still worry about it.

But now, I have answers. We’re not bad parents. We’re not just failing to cope where others manage apparently effortlessly – or at least with far less stress than we can manage.

The boys don’t eat with cutlery if they can help it because they have problems with fine motor control, commonly associated with autism. It’s the same reason that all of them have dreadful handwriting. Holding pens or forks can actually hurt their fingers, because they only have the modes of grab hold very tightly, or hold so loosely they drop stuff.

They all show signs of sensory processing disorder. That’s why they don’t like wearing shoes, which reduce the feedback they get from their feet – they lack awareness of the positions of their bodies in space, and wearing shoes exacerbates that. They are extra sensitive to how their clothes feel (labels, buttons, zips, scratchy bits, just don’t like the way it feels for no reason they can articulate). They’re not good at either regulating their own temperatures, or identifying whether they’re too hot or too cold, so they will suddenly realise they’re too hot and shed clothes, or become miserable and not realise they’re too cold until we draw to their attention that it’s snowing and they’re in a t-shirt. They will resist wearing coats or fleeces, and if we do manage to get them to put them on, they’ll take them off the second they’re not freezing cold, meaning we leave a trail of coats, jackets and jumpers wherever we go. On the other hand, if they find a fleece or scarf they like the feel of (usually mine), they’ll cuddle up in them, even in the middle of summer.

SPD is also the reason the boys put non-food items in their mouths, and yet are difficult to feed. They run more on texture and mouth-feel than on taste, and if they are not in the mood for a particular food, they’ll go hungry rather than eat it. I read somewhere that for people with SPD, it can be like swallowing razor blades for them to eat food that’s unpleasant to them. They can tell the difference between Bird’s Eye and Sainsburys Own chicken nuggets, and whether the recipe for a particular food item has changed.

They make dens and sleep  in sleeping bags because that reduces the amount of sensory imput imposing on them, relaxes them and generally calms them. The tablet and phone, often with headphones, calms them for the same reason – the ‘real’ world is overwhelming, unpredictable and exhausting, and they need to reduce their interaction with it.

When that reduction is not possible, meltdowns happen – they’re the episodes that look like tantrums. The approach to reducing meltdowns is to catch the signs early on and teach the children to remove themselves from the stressful situations, from the overstimulation, as best they can. It’s a work in progress.

(As I’m writing this, I’m hearing bangs and crashes from upstairs. I shout ‘Is someone having a meltdown?’ and the reply is ‘No, we’re building a bookcase’. It’s genuinely impossible to tell.)

Between the five of us we have one formal diagnosis, one fast approaching, and three who are unlikely to ever get formal diagnoses (we (allegedly) cope too well) but are very definitely not neurotypical. We also have three cats, one with a pacemaker, one with no teeth who still manages to catch and kill birds very effectively, and one ex-stray who brings us home rats now and again.

Chaos and meltdowns abound, clothes litter every surface, as do books and technology. There’s a potential den in every corner, and real dens in about 25% of them. There are Heath Robinson-style creations everywhere – not so much with sellotape and string as with insulation tape and bits of hacked Ikea. Who said autistic people have no imagination?

Welcome to the House of Autism.

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The Aliens Among You

We live among you like aliens. We look like you – superficially. Some of us can pass, some of us simply can’t, some of us are bone-weary after years of trying look normal and can’t be bothered any more. We are not aliens, though, because we evolved from you. We are just different. And no matter how hard we try to be like you, you can sense the difference, somehow.

Most of us are missing some or all of the social genes. The world has a set of rules that were not given to us at birth, and we have spent vast amounts of time and energy deducing what these rules must be from watching you, learning by rote what comes to you instinctively. And so very often we get it wrong.

We are subject to a constant barrage of overwhelming information. Some of us are blessed and cursed with the ability to synthesise this data and draw immense, creative conclusions from what we experience. Some of us can’t cope at all, and are cursed and blessed with the ability to disappear entirely into worlds of our own making. The majority of us are somewhere in between, retreating at the end of every day to the safety of our own familiar spaces, exhausted by the effort of dealing with constant sensory overload, and having to live by rules we don’t understand.

Some of us have greatly increased sensitivity, feeling emotional and physical pain with an intensity that you find baffling. Some of us are so disconnected from our bodies or our feelings that we have trouble identifying when we are in pain at all.

Some of us are geniuses, some of us are very bright, some of us are of average intellect, some of us don’t display anything like conventional intelligence. Most of us have the ability to focus on what interests us to the point of obsession. Some of us can make good use of that in the wider world, and some of us just enjoy it.

We are the weirdos on the bus, waving our hands around and having conversations with ourselves out loud. We are the children melting down in a café because they don’t serve the only food we can tolerate, or the lights are so bright they’re like knives, or the sound is so cripplingly loud we can’t function. We are the socially awkward, well-meaning members of your committees or groups or organisations. We are nerds and geeks.

We are introverts and extroverts, we are self-conscious, we are totally uncaring of what others think of us. We are hugely creative and imaginative, we are completely literal. Some of us can be all of these at the same time.

Some of us will be incredibly successful in our chosen fields, some of us will never be able to live independently. Some of us will find love, some of us will not find happiness in a conventional relationship. Some of us don’t want to.

We are intricate, many-dimensional, multi-faceted beings being hammered flat and squashed into round holes.

We are autistic. More accurately, we are people who are on the Autism Spectrum. We live among you, we are all around you, and there are more and more of us every day. Soon we will reach critical mass, and autism, Asperger’s syndrome, and all of the comorbidities will be as common, as unremarkable, as easily accommodated as red hair or a love of football.

Look around you. Look at yourself. And understand that whichever group you fall into, wherever you land on or off the spectrum, your way is not the right way. It’s just your right way.

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Spirals and Safety Nets – So Far So Good

I’ve stopped taking my antidepressants again. It took me about six months to come off them completely, and I stopped taking any about four months ago.

Despite thinking I would never be able to come off them, I’d found some worrying articles on the internet about antidepressants. I’m not convinced of the truth of them all, but I decided to reduce the dose after having been on my new plan of nutrition for quite some time, and feeling very stable. And that was ok, so I decided to try stopping them altogether. I did this without telling the doctor – which is absolutely NOT something I recommend.

So far so good.I was rather bad tempered and irritable for a while, although I believe that’s easing off now.I had one vague thought of ‘it’s all too much, I can’t live like this’ which led me as far as the cupboard with the chocolate in it, and then went away. I’m less resilient and more emotional, although with time, I’m becoming more resilient.

I also find myself being harsher than I’m used to, and sometimes rather bitchy. I honestly don’t know how I feel about that. I am finding though, in my new role at a higher managerial level than I’ve ever been before, the harsh side of me is coming in useful:-)

I do feel as if I need some extra support, from non-medicinal, more holistic methods. I’ve started some counselling again – I find it helps me to organise my thoughts, even when nothing exceptional is going on in my life. I’m doing a lot of walking, and some meditation, and I’ve discovered the joys of adult colouring, of which my favourites are Moorish designs:-)

I also found a new eating and lifestyle plan. Like religion and politics, all plans which address what food you eat and what movement you do, evoke evangelical responses. So all I will do is say, this works for me, it’s called AltShift, and can be found here:

http://30kview.com/

And in a similar light to my I Am Fat blogpost, a very enlightening blog post explaining why so many of us are fat, can be found here:

http://30kview.com/live-the-way-you-want-to-look-part-1/

So after all of the times I was told, and believed, I would never be able to live a functional life without antidepressants, I have learned a lesson: Never say never.

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Step Sideways

When did I become less? When did it start to matter that I am fat, don’t wear makeup, don’t have natural style, don’t look feminine? When did it become important that I fill in endless forms, keep the house tidy, have the right car? When did I begin to feel uneasy that I don’t know the right people, don’t fit in with the crowd, don’t have the same interests and priorities as most of the rest of the world?

When? Forever. I’ve always regretted not living up to – everyone else’s standards. In most areas of my life.

I’ve known for a long time that I’m measuring myself against false standards. I’ve fought against those standards for nearly as long. But that’s a pointless exercise. The world is not going to change – well it will, but not enough in my lifetime. I can, and should, fight against prejudice, narrow-mindedness, bigotry, sexism… fight not for tolerance, but for acceptance. Fight for an environment, whether microcosm or macrocosm, where I can feel accepted and loved and able to be myself, whatever that self turns out to be.

I do not much like this society we live in. There are some parts of it I love, but some elements that subject me and my loved ones to unbearable pressure. Fighting against it while trying to live in it is not going to work. So I need to disengage. I need to walk away. I need to step sideways out of the battle, and live a life I’m happy with.

I don’t know yet what form this disengagement will take in practical terms, although giving everything up in favour of a camper van and the travelling life is becoming an increasingly attractive idea. But I do know that whatever changes happen will start with my emotional disengagement and refusal to deal with unnecessary judgement and pointless demands.

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Unfinished Stories

Recently I realised I haven’t written for either of my blogs for quite some time. I’ve been so very busy, my health has been up and down, my healing journey has been taking up a lot of my energy, and somehow at the same time, I’ve managed to hold down a full time job and help to look after three children. And two cats. And for some of the time, a foster cat and seven foster kittens.

By its very nature, a blog should be along the lines of 1001 Nights – never finished, leaving you wanting to know the next instalment. Rereading my previous post reminded me of what had just started happening in my life, and inspired me to post an update on the various topics I blog about

Food

Firstly, the Paleo diet. I stuck to it for some time and my health started to improve very slowly. Not fast enough for impatient me though, and various stresses of family life and work led to a nose-dive. So after a particularly bad week, I decided to try the AutoImmune Protocol, a much more restricted version of the Paleo diet, designed to eliminate anything that could possibly be bad for someone with autoimmune diseases, and then once healing has begun, to introduce them back into the diet to see which ones cause problems.

I managed three weeks, and then couldn’t cope with the restrictions and more importantly, the lack of chocolate. And some of my symptoms improved, but some got worse. Eventually I settled into a mostly grain-free, low sugar, mostly nut-free, milk free diet, which allows for organic yoghurt and cheese in moderation, and small amounts of nightshades some of the time (that’s potatoes, bell peppers and tomatoes). And chocolate, as long as it’s 85% Green and Black’s organic fairtrade chocolate.

I tracked my weight and my food for a bit, and weirdly found that as long as I stuck to a high-fat, medium protein, low carb diet of the type described above, I would very slowly lose weight on around 3000 calories a day. If I restricted my calories or added in any of the foods that cause me problems, I put weight on. It’s counter-intuitive – and I’m doing absolutely no exercise at all because I’m recovering from a long period of exhaustion, so it’s not that I’m compensating by using up more calories. However, in trying to address my other health issues, I found out why this is happening.

Physical Health

By the start of this year, the exhaustion, fluctuating appetite, nausea and arthritis were getting far worse than the standard colitis symptoms, which although still present, just weren’t that bad. Conventional medicine wasn’t that interested in these symptoms because they can’t be cured with a pill, so I looked around some Paleo sites and found a nutritional therapist. I’ve had several appointments now, and done some comprehensive tests, and found that despite being regarded as obese by anyone’s standards (or cuddly if you are a cat or a six-year-old:-) I’m malnourished. At least I was. Short on most of the B-vitamins, pancreatic enzyme, stomach acid, vitamin D, too many others to mention. And all of this prevented my body from digesting food, and when it was digested, prevented my cells from using the energy properly. Result – nutrition got laid down as fat, while my cells were starved of energy. I was constantly exhausted, and constantly hungry.

I’m now taking so many supplements I rattle, and after two months, it’s working. I have good days and bad days, but overall, I’m on the up. I’m looking at rattling for a long time until I’m truly on top form, but I’m much better than I have been for a long long time. And with a combination of the right eating plan for me, and all of the supplements, I’m not hungry any more.

Mental Health

The strangest result, and I’m not sure what it’s a result of, is that I’m not depressed anymore. I was coping really well on my lowest dose of antidepressant, but there was still a muted quality to my emotions, kind of muffled. And there was always an awareness that there was the possibility that I would go downhill again.

That’s gone. And it’s been a few months now. I still get stressed, annoyed, unhappy about the usual things in life that get people down, but I bounce back really quickly for the smallest reasons. It’s the exact opposite of a depressive episode, where the slightest incident, or nothing, can drag me down, even when life is good and there’s a temporary uplift in my emotions.

It could be the supplements, the change in diet, a new contract that I’m enjoying immensely, or the improvement in the weather… I don’t care. I’m feeling good for now.

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Paleo Plan

Sitting here in the middle of the night eating bread and butter to calm my stomach down, the idea of starting a totally Paleo way of eating feels ridiculous and unachievable. But from Monday, that’s exactly what I’ll be doing. I’ve signed up for six months of meal plans, shopping lists and suggested workouts on a site called paleoplan.com.

I first read a book called Protein Power in early 2000, and I was swayed by the authors’ argument that the human body is not set up for a diet in refined carbohydrates. This is no longer lunatic fringe theory, of course, but back then, it really was not regarded highly by the medical profession. Over the years, I’ve come to believe that adjusting my diet to include the kind of nutritional breakdown that the hunter gatherers had (minus the insects!) and eating more in the way of organic, unrefined and unprocessed food would be extremely good for my health, but until now I’ve just not had the time, energy, impetus, need, to go for it wholeheartedly.

But there is no doubt about it, I need to do something about my health and my lifestyle. I’ve taken the alopathic medical route, and I’m diligently taking the drugs, talking to the specialists, striving as hard as I can to do the right thing about my colitis. I’m doing some of the complementary stuff as well, as much yoga as I can dredge up the energy for, eating live yoghurt, trying to reduce stress (hah!) – and although in some ways I’m better than I was, I’m still nowhere near top form. I have three children and a demanding job – I need to be on top form. The Paleo diet makes no claim to cure my colitis – but through experience and common sense, I’m hoping that it will have an overall positive effect on my health.

It may not be realistic to assume I will ever be superwoman, given that I have a non-curable lifelong debilitating condition. I never really was superwoman to start with! But I am convinced there has to be a way for me to regain my energy levels. I’ve attempted to eat in a more ‘paleo’ way before, but it involves such a radical change to my lifestyle that I’ve not been able to stick to it. Paleoplan though, makes all my choices for me. Every meal and snack is pre-chosen for me and there’s a shopping list weekly, so that I’ll always have the right food in the house. I decided to give it a go when I realised that it costs about the same per month as my subscription to Netflix…

Hopefully, I’ll end up losing some weight as well as experiencing some other health benefits. The Cambridge Diet worked. I stuck to it for eight weeks, and lost two stone. I’m glad I did it, even though I put some of the weight back on, because otherwise I’d now be two stone more, and I think that would be very uncomfortable. But for someone like me, for whom food is directly linked in to my happiness and satisfaction with life, in my situation, with three children, and living in a culture (Jewish) where food, community meals, feeding people is so utterly ingrained, it was not sustainable. And, frankly, it was miserable. And because it was not sustainable, it suffered from the same problem that most diets do – when I stopped, I gained weight again.

I would recommend the Cambridge Diet for anyone who needs to lose significant weight in a short space of time. The shakes and soups and bars are actually rather nice, there is a lot of support available from your consultant, and I believe it’s said by the NHS to be nutritionally sound with regard to essential nutrients. But long term, it’s just not for me.

So Paleo, here we come. I’ve bought the first week’s food thanks to the joy of online shopping, and the cost was eyewatering. However, I (hopefully) won’t be buying snacks, or in fact, any other food – so maybe it will even out in time. Even if it doesn’t, if I can find some way of not feeling nauseous most of the time, losing my almost constant headaches, reducing the effects of the arthritis and managing to drag my leadbum up off the sofa, it’ll be worth the extra cost.

 

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Five Stages of Grief

Apparently, people being told they have a chronic illness often go through the five stages of grief which are more commonly spoken of in relation to bereavement. I was talking to The Husband today about my attitudes to my colitis, and as he does, he opened his mouth and said something completely relevant without meaning to, about how I had progressed through the phases of grief. I wasn’t sure this would apply to chronic illnesses, so I looked it up on that fount of all wisdom – the interweb. I found it on a website, so it must be true. Actually I found it on many websites, and some of them were quite helpful.

The stages vary, depending on who is writing about them, but the list I found which resonated with me is:

Denial
Anger
Bargaining (or guilt)
Depression/Anxiety
Acceptance

I wish I had known about this, not only when I was diagnosed with ulcerative colitis, but also when I realised that I suffer from depression, probably always will, and will never be able to live a functional life long-term without medication.

I’ve got to the acceptance stage with the depression, fairly recently, although I’m still trying to recover from some of the trauma and disruption that I experienced when I tried to come off the antidepressants last summer. But the acceptance stage with the colitis has just started to be possible.

My colitis is not getting better. In fact it’s getting slowly but steadily worse, regardless of anything I do. I have to caveat that by saying, so far. There are many more medical solutions that can be tried. There are many people with ulcerative colitis who go into remission for years on end. But as a result of this downward trend, over the last year or so, after the numbness and relief at being diagnosed wore off, I’ve gone through all of these phases.

Denial. It’s just a bit of blood. I feel a bit sick now and again, but doesn’t everyone? It doesn’t stop me from working, I get a bit tired now and then, but I have three children and a full time job – doesn’t everyone get tired? And I suffer from depression, of course I get tired. I’m just panicking over nothing. I’m making a big fuss about nothing.

But I wasn’t. The reactions of the specialists and the IBD nurses (bless them, btw, they are totally wonderful) clearly show that.

Anger. This manifests as anger with myself. It’s my lifestyle, my diet, my weight, my lack of fitness, I’m just too lazy to do the things I’m supposed to do, so I’ve got colitis. Sometimes it’s anger with the NHS – if they could only get hold of the right treatment, get me seen more often by the specialists, explain things better, somehow the colitis wouldn’t be so bad. And sometimes it’s just anger with life – I’m only 44 for God’s sake. This should not be happening to me. It’s not fair.

No – it isn’t fair. But it’s not my fault, it’s not the fault of the NHS, and far worse things happen to other people for no apparent reason.

Guilt. I’ll do away with the bargaining, because my Jewish Mother side does guilt so very well that everything else fades into the background:-) I do feel guilty – that comes after the anger with myself, or before it, or just with it sometimes. I feel guilty that I’m being a burden to my family, who have to put up with my exhaustion and my bad moods. I feel guilty that I don’t have the energy to do more exercise and more housework. I feel guilty that I don’t have the willpower to stick to the right kind of diet to help (even though there’s no evidence that weight or diet affects the disease at all). I even feel guilty because I’m not responding to the meds, despite using all of them meticulously.

But I can’t magic up energy out of nowhere, and I can’t do any more than I currently do in sticking with the medication and letting the NHS know when the meds aren’t working. And it’s very hard to stick to a low carb diet when the only thing (and I mean truly the only thing) that lessens the feelings of nausea, is bread.

Depression/Anxiety. Yep, I feel both of those. I’m used to them both though, so I can tell when the depression I’m feeling is actually an extended low mood because of the knowledge that the colitis will be with me for the rest of my life. It has a cause, and therefore can be more easily dealt with. I have been extremely anxious on and off lately, and not really understood why – I just didn’t make the connection. Now that I have, it’ll be interesting to see whether my anxiety attacks can be more easily dealt with as well. The kind of person I am means that understanding can take me a long way down the healing process.

Acceptance. I’m struggling with this one at the moment – but I’ve made the conscious decision to strive for it. What tends to happen is that I have a period when I feel all of the above in a more or less random order, and generally give myself a hard time. When I remember that it’s not my fault, I’m doing all I can to address it, and the effects are real and significant (I’m not just ‘making a fuss’), then my mood lifts immensely. Then, I have the energy to deal with my actual symptoms, treat myself gently, and generally improve the quality of life of everyone around me.

I guess the morals of this blog post are, firstly, whatever your health or emotional problem happens to be, whether it’s chronic illness, chronic pain, bereavement, divorce, all of the guilt, anger, anxiety and denial is perfectly normal – and acceptance will come. Secondly, knowing that these stages are normal, may help – it certainly is helping me right now. And thirdly – be gentle with yourself. Not only is that the right thing to do, but it’s a pragmatic way to utilize your energy most efficiently at a time when your energy reserves might well be depleted. So if you can’t be gentle with yourself for yourself, because you truly belief you deserve it (which you do), do it because it makes sense, do it for the people around you.

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