How I Stopped Caring (and started asking “obvious” questions)

One of the situations that causes me a lot of upset, and I believe I’m not alone in the neurodiverse world in this, is when I don’t know what to do – when it’s not obvious what my next action should be.

For instance, in cafes and restaurants. And canteens. And pubs. It’s going to be blindingly obvious to the people who own and run such establishments how they work. You come in to the establishment in question, sit down, and a waitress or waiter comes over and takes your order. But wait – sometimes, you have to order at the bar. These two types of establishment usually look quite similar, and it can be difficult to know what you’re supposed to do.

Sometimes, you take a tray and walk along toward the till with food on display, and you choose some of what you want to eat, like sandwiches or dessert, but other items of what you want to eat, like a hot main course, you have to order. Then if you do that, sometimes they dish up the hot food on a plate for you to take immediately, but sometimes they give you a number and you sit down and wait for the serving staff to come over with the food you ordered. Quite often, you don’t know what’s available until you get to the right area of the cafe (they’re usually cafes), and you have to read the menu and make a decision while the serving staff are looking at you, impatiently waiting for you to order, and there’s a queue building up behind you.

All of this becomes especially difficult to cope with if you have children with you. There have been many occasions where I’ve become too stressed out to choose anything at all, and the boys have ended up with food they don’t like because they, and I, could not make a rational decision in the face of all of this pressure.

It’s not just eating establishments that have this problem. Doctors’ surgeries and clinics are another example. They all have a different system, and they all expect you to know what that system is without being told. And cinemas – sometimes you buy your tickets from the place that says ‘Tickets’, but also quite often you buy them from the sweet and popcorn counter.

When I first got on a bus in London, I swiped my Oyster card with no problem. But I didn’t know whether you also had to swipe it when you got off (turns out, you don’t). The Tube is different – you swipe in and swipe out. And the trams are different again – I’m not sure I ever figured them out properly.

A genuine question for my neurotypical readers – does this stuff really come naturally to you? Or do you just not feel the stress that neurodiverse people feel when you realise you don’t know what to do?

Recently, I decided to stop caring and just ask. No matter how idiotic it makes me appear, I’ve started saying ‘I’m sorry, I don’t understand – what am I supposed to do here?’ Or in the case of cafes where it’s difficult to find out what’s on offer, with the queues and the lack of menus, I’ll often go somewhere else.

Asking the obvious question worked at the cinema the other weekend, where the counters that said ‘Tickets’ were closed, and there was no-one there. There was one person at the popcorn counter and two people waiting to take tickets. So I said to the two people taking tickets ‘I don’t understand, where do I buy the tickets?’ And they were very nice, and pointed me to the popcorn counter.

It worked at the physio clinic, where the lady behind the desk gave me a string of verbal instructions quite rapidly. I filled in the form as she asked, and then said ‘I’m sorry, what am I supposed to do next?’ And she told me, quite pleasantly, and it was no problem.

It worked when I asked the driver on the London bus whether I had to swipe back out again, although he did look at me a bit strangely.

Problems do happen when you get a, frankly, nasty person behind whatever ‘counter’ you’re having to deal with. There is a receptionist at a particular establishment that I used to frequent, who is really unpleasant. She is deliberately unhelpful, and really quite rude when you don’t know exactly what you’re supposed to be doing without being told.

I don’t go there any more.

Perhaps I’m becoming harsh in my old age, but I’m definitely learning how to hold a grudge, and vote with my debit card. I guess being what I now call ‘somewhere on the ASD spectrum’ and used to call ‘socially inept’ makes me quite vulnerable in some ways. It’s actually a really easy way to weed out the kind from the unkind, and I value kindness above most other qualities in any person. So from now on I’ll be asking questions when I don’t know what I’m supposed to be doing, and making a judgement on what response I get back. Anyone who belittles me, acts as if I’m stupid, or is in any way unkind or impatient with me because I had to ask, might just get told exactly what I think of their response. As bluntly and socially ineptly as I can.

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Autie Birthday

It’s Youngest’s birthday this week. Because I won’t be there on the day (work commitments), we had his birthday treat day today. This is the story of that day.

This year, we all went out to the cinema, with Youngest’s best friend, to see Guardians of the Galaxy 2. Two of our local cinemas, Vue Cwmbran and Cineworld Newport, both do Autism Friendly showings once a month on a Sunday morning (different Sundays luckily!) They turn the sound down, turn the air con off, don’t show any adverts or trailers, and advertise it as Autism Friendly, so that anyone who attends knows that children (and some adults) with special needs will be attending, and may disrupt the screening somewhat.

Youngest is, admittedly, not 12 yet. But the film is a 12A, and he loved it. Actually, all of us loved it:-) I actually did laugh out loud on many occasions, which I don’t often do in the cinema. (I will now have to go back and watch Guardians of the Galaxy 1. I didn’t like it at the time I watched it, but looking back, that might have been on Netflix while being constantly disturbed by children and cats. So I’ll try to make some space to watch it – not undisturbed, obviously, but with less disturbance).

This is not the first Autism Friendly showing I’ve been to, but I’d forgotten how relaxing it is. The sound is not so loud it’s overwhelming – in fact, at the start of GotG II the sound was so quiet we were having a bit of trouble hearing it, but they turned it up pretty fast, until it was just the right volume. And the lack of adverts and trailers was very helpful, especially because this was such a long film.

But what was so absolutely great was that all of the other people there were parties where one or more of them had special needs. So if the boys went out to the loo several times, fidgeted around on the chairs, moved chairs to see better, ate loud rustley popcorn, and didn’t moderate their voices to a whisper when they wanted something, or wanted to comment on the film, it didn’t matter – because many of the other people in there were doing exactly the same. Including me.

I didn’t realise fully until today how much energy it takes to take my boys out in public. Not because there’s anything wrong with them, but because they are different. Noticeably, flappingly, shoelessly, different. And sometimes their differences do cause a disturbance. In a non Autism Friendly showing at the pictures, we have to shush and manage so that the rest of the audience aren’t disturbed. If someone is disapproving, we have to defend our children – and by implication, our parenting. All of this is usually done non-verbally, with body language and looks. So sometimes we don’t notice it at all until it’s already escalated in the heads of the people doing the disapproving.

All of this is exhausting. But we will continue to take the boys to ‘ordinary’ screenings, if they want to go, because they enjoy it even if we are shushing and managing all the way through.

And we will continue to take them to Harvester restaurants, where the waiters and waitresses are infallibly polite, friendly, and accommodating to our children and their eating needs. Today, despite the exacting instructions from the boys (and parents, and Grandma) about the food and what it can and mustn’t contain, I took the herb butter off the steak (and had to wipe the steak off with a clean napkin), and removed all of the cabbage and green beans from mixed steamed vegetables… but no-one’s dinner had to be taken back or replaced with something else, and everyone had a great time and enjoyed their meals.

All in all, this was a very good day – another unexpected bonus:-)

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Unexpected Bonuses

Recently I read an article on the BBC News website about how parents of autistic children are expected to be relentlessly positive about their children, and celebrate their differences and triumphs. The article centred around one parent who was discussing how difficult that can be, and how she wishes her children don’t have autism – she says “I often feel there’s not really space in the autism world for a mother to say ‘I really wish this wasn’t happening, I don’t feel blessed, I don’t feel strong, I don’t feel like it’s all happening for a reason'”.

I do think that any time anyone tries to impose a one-size-fits-all attitude to any subject, that’s going to be unacceptable for some people. I’ve done a lot of thinking around the subject since I read this article, and the opinion I’ve landed on is, if you can take pleasure and pride in your autistic children’s achievements, that’s fantastic. And if your life, and theirs, is difficult and challenging and demanding and exhausting because they are autistic, and if sometimes that just plain brings you down and makes you unhappy, and you wish it weren’t so, that’s just as valid an experience.

The autism spectrum is very broad, and it so happens that our children are articulate and intelligent. So for us in the House of Autism, we have good times and bad times. Even if we could, we wouldn’t take away the boys’ autism, but we do wish they didn’t have some of the associated problems. We wish they were happier. We wish they found it easier to deal with unexpected changes, to have more friends, to not explode in anger at what seem like trivial triggers. On the other hand, if all of these were true, would they be autistic? More importantly, would they still be themselves?

There are days when we are exhausted, and fail to cope. There are days when they’ve had a bad day, for whatever reason, when life does seem dark and the future seems very uncertain. So I do understand that an insistence on relentless positivity is not balanced, or helpful.

But it so happens we’ve had some good times this weekend. And I wanted to share them – partly just to emphasise that it’s not all always a dark time, but mostly because I could bang on about my children and how wonderful and marvellous they are for hours on end. And that’s nothing to do with their autism, their struggles or their capabilities – it’s because I’m a mother:-)

This weekend The Husband is having a well-earned break from his role as primary carer, and is at a writing retreat concentrating on his other job as an about-to-be-published author. So I am looking after all three boys by myself.

Since I work away for part of the week, this is something that The Husband does most of the time, and I’m well aware that this is a full time job and a half. When he has a break, which we try to arrange for once or twice a year, I look after the boys, and apart from last year (when we had a crisis with the cat with the pacemaker at the same time he was away and I was also trying to work from home and it all got a bit stressful), I cope pretty well.

Times like these do give me more one to one time with the boys though, which is great, and fun, and full of unexpected bonuses. Yesterday, I had to pick up a parcel from the post office, which is somewhere on an industrial estate in Pontypool. I looked up the postcode but it’s not obvious where exactly it is, and the card does not give the full address. So off I went with Youngest, who is nine next week. He had the card, and instructions to tell me if he saw a sign with ‘Industrial Estate’ on it. He saw the sign – I did not. Off we went down an incredibly long narrow road, which continually looked as if it was about to go up the side of a mountain. Youngest had instructions to look for a building with the same logo as the one on the card, while I concentrated on not driving into other cars or lampposts. He spotted the Post Office building – I did not. Without Youngest in the car, I would have been driving around Pontypool for hours.

Then Middlest, who is 12, was playing in the back garden on the trampoline, when he decided to mend the washing line. He found various of those strange shaped pieces of metal that will come in useful later, and astonishingly, they came in useful. He also knows the workings of the washing line gadget and how to make it longer and shorter, whereas I have no idea – and now we have twice as much washing line as we did, and high enough up off the ground so that the towels don’t drag in the mud. I hadn’t even been aware there was a problem – but he saw an opportunity to make things better, and so he did.

Meanwhile we’ve been struggling to feed Eldest a decent diet. He’s 15, and ravenously hungry most of the time (when he’s not sleeping), but his food preferences are limited. So he decided to make an Obama list. Apparently when Barack Obama was in office, in order to reduce decision fatigue, he supplied his chef with a list of all foods that he liked, and the chef would just pick something from the list and serve it up. So yesterday, The Husband and I received a list by email of all the foods Eldest will eat – with a lovely picture of Mr Obama at the top. Eldest was so impressed at how that cleared his head and reduced his stress, that he’s decided to do the same with his clothes. In order to do that of course, he’ll have to tidy his bedroom and excavate all of his clothes, many of which have erroneously been declared missing.

Ok so Youngest made a hole in the wall after a row with Middlest, Middlest keeps forgetting his homework and has immense trouble with focus, and Eldest is a typical antisocial grumpy teenager with a bedroom that looks as if someone shook it up like a snow globe, but there are moments of pure joy when I’m so proud of them. It may be that we’re very lucky – or it may be that even those parents in the worst of situations have the occasional moment of pure joy. I really do hope it’s the latter.

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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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