Sensory Issues 5 – Proprioception and Balance

I had to do a little research for this final post on sensory issues, and as usual when I delve deeper into something new under the autism banner I discover explanations for aspects of my behaviour.

Proprioception is about awareness of where our bodies are in relation to the world around us, or parts of our bodies are in relation to each other. As a child I was not very good at sports or riding bikes or running. I can vividly remember the feeling of trying my hardest to run fast and nothing seeming to work properly. My arms and legs didn’t co-ordinate and no matter how much I willed greater speed, it was still like wading through treacle. I still have dreams about this.

Dance was different. For some reason I could always dance. Maybe it was the music? Maybe it was because the only thing I had to deal with was the inside of me? I didn’t have to manage a relationship between me, my body, and some external thing; a ball, a bike, a hula hoop, the finish line.

I quite often discover bruises with no recollection of having got them, bumping into things without realising it. I grip pens, pencils, brushes, knitting needles, cooking knives too tight. I press too hard when I write. I went through a time of snapping hard contact lenses whilst cleaning them because I couldn’t feel them properly. I wear single-use soft lenses now but can still have problems getting them out of their little cases.

I’ve recently discovered the joy of weighted blankets. It’s a re-discovery really. As a child I had to be tucked into bed really tightly. I used to make sure my blankets were as tightly tucked under as the stereotypical armed forces trainee being inspected by a sergeant. I would then wriggle my way in through the top to keep everything constricted. I remember sleeping over at my grandparents’ place. They had no heating upstairs and so our bed was piled high with blankets and bedspreads and I loved the weight of it. I’d forgotten all that.

A couple of years back I arrived in Marrakech, in April, at night, to discover it was COLD. I dived under the bedcovers in my hotel room to an unexpected weight of blankets, just like back in my grandparents’ house. Despite being away from home, in the middle of a noisy city (right beside the Jmaa el Fnaa square), and facing a long journey the next day, I slept like a log. I still didn’t register the connection though, until a couple of nights ago.

I’ve just replaced the duvet on our bed, added a new cover for it, and then put an extra throw over the top as a quick solution to the dog jumping up with muddy paws, or chewing a raw hide stick on the bed (he has slobbery tendencies). This new duvet is heavier and the extra throw adds to the pressure and I love it. I’m sleeping more soundly. I often sit in my bed when I work on my laptop. This new weight on my legs is soothing and calming.

Onto balance and the vestibular system.

As a child I loved swings, rocking horses (those huge ones that could seat eight children, at the local parks), the swinging umbrellas that went round and round, and from side to side. It was always a fine line between delight and nausea. I loved my grandma’s rocking chair.
I was also intensely travel sick. I have numerous memories of car journeys, coach trips, and bus rides and the smell of vomit.

As an adult I have to sit where I can look straight ahead in a car or bus. I had to close my eyes on one of the Harry Potter rides or risk throwing up over my trainers. I really shouldn’t have gone on it a second time. Take-off and landing when flying are horrific.

When I’m reading or writing, I rock. If I can’t sleep, or recently when I’ve been ill (with that horrible flu-ey, shivery, ache) I rock in bed. I’ve recently been given an old rocking chair. This has reminded me to get some comfortable cushions for it so I can rock to my heart’s content and not look odd.

We don’t choose to be clumsy, to need or hate weight and pressure on our bodies. We don’t choose to get dizzy or sick with minimal movement. Often there are simple adaptations to make our life more comfortable, no more different than say a short person using a step-stool to reach the top cupboard in their kitchen.



My Dream House

This post probably isn’t what you think it’s going to be.

I’m not going to wax-lyrical about that perfect house with a view on a woodland through a huge floor to ceiling window. Its interiors full of glowing wood, reading nooks, and a jaw-dropping library.

It is about autism and masking, if you’ll bear with it.

For many years I’ve had a recurring dream about a house (sometimes it’s a hotel). I know the house is mine and yet it looks nothing like my actual house. Mostly the dream houses were disturbing and unsettling. Very occasionally they were wondrous, discovering a hidden, fairytale gem of a room in this house of mine. Let me give you a guided tour.

The first one I remember was a big old Victorian vicarage type house where the roof was collapsing, the garden path was overgrown, and inside, it had tardis-like dimensions with new rooms at every unexpected twist in a stairway or landing. I had acquired this house unexpectedly, inherited it. All the rooms were in poor repair. I was responsible for this; how on earth was I going to be able to afford all the things that needed doing? To add to the dilemma, some of the rooms had tenants. I woke in panic and overwhelm. I had no idea what the dream meant.

A later dream had a house like one of the big, beautiful, stone, terraced houses in Glasgow. Don’t ask me which era. I have no idea. I’m tempted to say Georgian but I’d just be making it up.
To enter this particular house I had to climb a set of steep external steps to the front door and then an even steeper set of internal stairs up to a central landing. The main feature of this landing, and the house, was a beautifully appointed, shining bar. Every bottle of every drink you could imagine was there. You couldn’t go anywhere in the house without first negotiating the bar.

One of the jewel-like dreams was where I wandered around my house and discovered a beautiful mother-of-pearl bathroom. I had never seen this room before. It was full of gorgeous colours, soft shapes, warmth, steaming water and something magical. I couldn’t believe it was mine and I’d never found it before. In hindsight it was like the magical prefects’ bathroom in Harry Potter and the Goblet of Fire. I was distraught to wake up and have to leave the room.

Another one was an Alpine A-shaped house with a woodland garden. I didn’t go inside the house. I spent all my time in the garden removing all the candles inside old jam jars spread everywhere by my parents. They had just left them behind, not bothering to take the jars with them when they left. I didn’t want these ugly things in my garden. I wanted my candles, in beautiful holders.

It was a while later that I read or was told that when we dream of houses, they often represent our selves.

The house with a bar was around the time I became aware that I was in danger of becoming dependant on alcohol to deal with the stress of my daily life. The turning point was the evening I got home from work, having picked up my two (at that time) sons from after-school club, and the youngest one, on seeing how stressed I was, told me, “You sit down Mummy and I’ll go get you a glass of wine”. Wake-up call. From that point on, my rule was no weekday drinking.

Yesterday I dreamt of my house again. It was back to the big, old, Victorian house. This time it was in good repair. My youngest son came in with me and we explored this fascinating building with lots of rooms, interesting twists and turns, and intriguing attics. All the rooms were empty and the walls needed a bit of cosmetic repair and certainly decorating but the whole place shone with potential; a blank canvas to do with whatever I choose. I suspect that starting this blog and publically stepping into my unmasking has led to this dream.

I’m autistic. I’m not broken. I don’t need fixing. There’s no need for massive, expensive repairs.

I have room after room after room to do with as I please. It is an opening up and out, not a closing down.


Sensory Issues Part 4 – smell/taste/texture

The process of writing this blog is making me see all the ways I’ve been not been seeing things, hearing them, tasting them. Only the ‘peak experiences’ had come to my attention.
If you had asked me, outside of the experience of pregnancy, I would have said that the olfactory channel had a small impact on me.

When I got pregnant with our first child, OMG it was horrific.

We had a gorgeous leather sofa and armchairs, so soft and squishy. I loved them. Until I didn’t.
I came home from work, already feeling a little pregnancy-queezy and there was this awful smell. At first I went in search of any dead birds or animals that one of the cats might have brought in and left in a sunny patch. Nothing. I paced the house trying to work out what it was. My husband came home. “Can you not smell it?” I demanded. He couldn’t. Long story short – it was the sofa, the leather. I would react physically, like a dog shaking its head and pawing at its muzzle to get rid of the smell.

“Can you not smell it?” is a frequent refrain of mine. It’s not enough to trigger a meltdown but it can have an accumulative effect if the other senses are overloaded. I have to walk out of a room if someone is wearing strong perfume or aftershave. My son and husband are banned from using spray deodorants anywhere where I might walk into a cloud of the stuff. In fact hubby now uses a roll-on instead. The current annoyance is our new carpets. I can smell them. I could smell the old ones, too, but I had labelled the smell an accumulation of ten years of dog-cats-teenageboys and was looking forward to a new odour-free home. The feckin’ smell is still here. It’s part of the carpets.

A related sense is taste. I’m a bit of a supertaster. I cannot bear bitter flavours. I’ve spent a couple of years trying to get used to tonic water in a G&T. I’ve finally given up experimenting with different types, flavours and garnishes. Why drink something so unpleasant in the name of being a grown up?
I hate bitter salad leaves. Give me the peppery ones any day – so it’s not about intensity of flavour. It’s about an aspect of flavour.
It isn’t just a dislike. I’m finding this one hard to describe. Thinking about it, it’s the same as the smell reaction, trying to physically shake out the taste.

A couple of days ago my neighbour gave me an exotic fruit (she’s from Hong Kong). I think it was a mango but it had an unusual shape and colour compared to the supermarket ones. I left it a while because often the things she gives us have unexpected qualities; different textures or flavours, like the apple-pears – they looked like apples but had the texture of pears. Many autistic people don’t like the unexpected in our food.
Eventually I decided to have the mango for my lunch. The flavour was very intense and had an edge to it. It reminded me that this ‘edge’ was a common experience from childhood. It opened up a door on memories. The edge is sharp and unpleasant; mango, broccoli, avocado, bitter leaves, marmalade, broth. It’s metallic.
In the same way I can only eat using certain cutlery. Our older knives and forks have the same effect as tinfoil on a tooth filling; it’s electric, metallic, painful. I’d noticed it for a while but never thought to decide to only eat using the cutlery that isn’t unpleasant. An aspect of masking – just putting up with something and getting on with it?

I wondered whether supermarket mangos have been bred to be sweeter these days and without that metallic edge? Or has my masking included flattening down not just emotional responses but also sensory responses. Does my perspex layer include everything in its controlling downward pressure? This masking, this layer, is helpful in navigating a world that can’t accept an adult having an expressive response to a taste or smell they don’t like. But how much have I missed in the opposite direction? Those wonderful flavours and smells blocked out?

This next section I wasn’t sure whether to include under taste or under a future post on rituals, rules, and routines; food separation. I don’t mind the different foods on my plate touching or even one covering another (unlike one of my sons who really doesn’t like foods on top of each other). I do however prefer to eat each thing on my plate separately. I like to taste my chicken or my broccoli (yes, I eat it now but only the young, less strong-tasting varieties) or my potatoes. If you mix them all up you can’t really taste anything. The exception is things that are supposed to be mixed up, like stew or spaghetti bolognaise that have their own mixed-up flavour. I might also mix up a couple of things if one of those foods is something I ‘ought’ to eat but I don’t really like the taste or texture of – mayonnaise to disguise the texture of a hard-boiled egg for example.

Which brings me to texture. I can’t eat slimy, slippery or rubbery things. Instant gag-reflex. My dad, when I was a child, insisted that the only way to eat boiled eggs was soft-boiled. Bleuch! I can only eat them hard-boiled or fried on both sides if we’re talking fried eggs. And again I often have to disguise the texture; a full English breakfast where the crispy bacon or well-done sausage hides the rubberiness of egg whites. I definitely have to be in the mood for eggs. I can’t bear fat on anything other than really crispy bacon.  Lightly cooked fish or overcooked fish; yuk. It’s a minefield.

I saw an angry tweet the other day from someone ranting about an adult only being able to eat chicken nuggets and french fries. You have to wonder what is going on in someone’s head that they can get so angry about another person’s food choices. What does it matter? It doesn’t affect your food choices. It’s not like you’re being forced to eat chicken nuggets. Get over it.
We don’t choose to have these sensitivities.

If you are or think you are autistic, you have a right to your own likes and dislikes. It’s time to pay attention to your own responses and choose those things that give you joy. Enjoy!

Sensory Issues Part 3 – Visual

When I first started to wonder about my own sensory issues, I kind of dismissed the visual channel because I wasn’t aware of the same degree of sensitivity as touch and sound. I wondered if there was much for me write under this heading. Then I began to remember things.

All the walls in my home are painted; plain colours, no wallpaper. Same with curtains and blinds. I have a problem with repeating patterns on wallpaper or fabrics. My brain has to follow the pattern repeatedly, tracing the shapes over and over with my eyes, looking for meaning in the shapes, relationships, connections. It becomes exhausting, irritating, and again leads to that inner nausea of overwhelm.

I remember buying some lovely-looking jungle-leaf pattern wallpaper that, on the roll, seemed to have a gloriously random pattern. Can you imagine my horror as with each new strip of paper on the wall, more and more of a huge diamond-shaped monstrosity revealed itself. It was unbearable. Whoever heard of a diamond shape regulated jungle? But I had to live with it because we had no money to buy new wallpaper. I spent the next several years trying not to look at the wallpaper in my living room.

I also cannot but help reading text of any kind. It is what my eyes are drawn to. Text on packaging, car registration plates, signs, labels, subtitles when I don’t need them. Car regs and labels are worst as my mind tries to make words out of random collections of letters. I find myself having to drag my gaze away time and again, with overload leading to that sick, exhausted feeling again.

There are colours that I can’t bear. Mustard. I hate mustard-yellow. I hate many shades of yellow and orange. I hate most shades of brown. Beige – bleuch! I dislike most colours that are at the yellow end of their spectrum; blue-toned red, fantastic, yellow-toned red, get it away from me.
I do love colour, though. Bright, electric colours. Bright walls. Flashy flowers in the garden. All the shades of green in a woodland. Jazzy colours for my clothes, or all black. Extremes, not dull in-betweens.

My sensitivites are mild, leading to general irritation rather than being unable to function but that’s not the case for many autistic people. For some, any of the above and levels of lighting or types of lighting can be excruciating, as an example. It means they cannot go to shops, or struggle in official buildings such as schools and hospitals. There are probably many more aspects of visual sensitivity that I don’t know of.

Having said that, if my other sensory channels are on overload then patterns, text, and colour-overload can be the final straw that leads to a shutdown and abandoning whatever I was trying to do.

If you suspect you are autistic and notice you find some environments exhausting or repeatedly get irritated in certain settings, take a look around you. Is there a common visual theme? Are there ways you can reduce the impact? Sunglasses can help some people in some situations. In your own home you may have more control.

If you know someone who is autistic, watch their reactions to visual input, especially if they are non-verbal. Pay attention. What can you do to help lighten their sensory burden?

Taking The Mask Off Is Complicated

You may or may not be aware of the recent, thought-provoking Twitter and blog campaign called #TakeTheMaskOff
It’s what has led me to start blogging again, both as an unmasking process for myself (with all the introspection that requires), and as a possible way to contribute to this world without damaging my own well-being.

What is the mask? you may be asking.
The mask is the sum total of all the ways in which autistic people (to greater or lesser degrees) change their behaviours – either unconsciously (especially if late or un-diagnosed*) or consciously (especially if you’ve been unlucky enough to suffer the trauma of ABA and similar ‘therapies’). Some of us are so adept at masking that we are chameleon-like, able to change and adapt to suit the people and situations in front of us. (And the stereotype of autistic people says we are all rigid and unable to be flexible?)
I was a chameleon. It was the perfect skill set (along with my analytical and pattern recognition skills) for the work I did as both an SME (small to medium enterprise) business consultant and as head of personal and organisational development in a sizeable NHS trust.

My technique (well-suited to the consultancy role) was to ask questions, ask for a tour of the place, listen, watch and then adapt my voice, my persona, my language, everything to match that organisation, its leaders, and its staff. It let me fit in and from there get to the bottom of whatever the business or organisational issues were and work with the owner or manager to solve problems.
I was good at it.
No surprise really as I’d been doing it all my life to survive everyday interactions. In a non-professional setting I sit back, watch the interactions, listen to conversations, work out the patterns and then behave accordingly. I’m the quiet one on the sidelines who slowly joins in once I’ve got the measure of what’s required to belong.
Sometimes (increasingly since self-identification) I leave before that point if the mismatch between who I can be and what the situation requires is too great.

That all sounds great, no? A successful career. Making important contributions to local businesses and the healthcare sector. The status and money that go with that.

Yeah, until the point where the accumulation of the costs of pretending grew so great that I burnt out.
On a Friday night in 1998 I finished a massive project putting in place bespoke processes to cover 3,500 staff (I won’t bore you with the details) and culminating in an organisation-wide external assessment. I must have picked the kids up from nursery.
I don’t remember. I crashed.
I spent two weeks in a catatonic state lying on my youngest child’s bunk-bed ‘watching’ video after video of Star Trek, Star Wars, etc. movies.
The next two weeks we were on holiday with in-laws.
That gave me a month in total to come back from the brink.
When I went back to work, I handed in my notice and have not worked full-time since leaving that employment, and mostly not at that level either.
Twenty years.

Most of those twenty years, the mask stayed firmly in place. Of course it did. I had no idea that I’m autistic. Maybe five or six years ago a friend pointed me in the direction of an online questionnaire. It said I was very likely autistic. I dismissed the result as evidence of me being a chameleon. I couldn’t be autistic as I was female (and that’s despite – or because of – a psychology background). Fast-forward two or three years and I came across a blog about female Aspies. Holy shit.
Down the rabbit hole of research I went. I read blog after blog. I completed a number of  questionnaires (several reliable sources required for any theory). I joined various online groups, learned more and more, and understood so much about myself for the first time in my life.  There was no doubting. I didn’t need a diagnosis (more on this on a future post).

It was as if a weight had lifted from me. I wasn’t broken. I didn’t need to be fixed. I could just be me. I cannot describe the relief.

The first tentative steps of unmasking involved sharing this new understanding with others. But who? My nuclear family – husband and offspring. Four of my closest friends – two in real-life and two online.
Over time the number grew to include my parents and in-laws, a couple of people who I guessed were also on the spectrum, and finally a tiny number of people who needed to know because of my own unmasking; “No, I’m sorry I can’t come out at short notice. I’m autistic. I need plenty of warning and it needs to be somewhere quiet and not too busy”.

To begin with this level of unmasking was fine, in fact it was more than fine. It was miraculous. I could let go of the ever-present anxiety of being found out as a fraud. I could stop dreaming-up acceptable reasons for not going out (illness, another meeting, something in my diary). I promised myself that from that point on I would be honest with those who knew (it’s too short notice, I can’t face people today, I haven’t got any words today).
I already had a pretty small group of friends. That group got smaller; some by my choice, some by their choice.
The other area of rationalisation was online. For a while there I’d lived a pseudo social-life, with a fair number of Facebook ‘friends’, Twitter followers, membership of active forums, and some semblance of being a ‘normal’ person who could interact with others. Online is great. It gives me time to think and process before I reply. As time went on though I had less and less energy to give and less and less patience with the this-doesn’t-change-anything nature of shouting into the bucket that can be social media, so I let go there, too.

For a while the anxiety lifted; the depression lifted. I loved my unmasking. I could just be me.

Now I’m into the next layer of taking the mask off and it’s way tougher. It requires looking at the real me. A me I don’t really know because of all the layers of the mask.
I recently went camping with girlfriends. Usually when we do this, it’s part of a festival of some sort, with opportunities to go do other things than just hang with friends. On each of those other occasions I’ve been mute by the last day and needing time alone afterwards to recover.
This year we were camping only, with no festival and all its distractions. I had all my strategies thought out and in fact I was still able to speak now and then on the way home. But only just. Still, I congratulated myself.

That first night back home, however, I dropped back into the catatonic state of exhaustion and re-lived the trip over and over. Without the festival distractions, I had to face myself fully. Down in the dip of depression, I saw myself as serious, nerdy, heavy, and why on earth would my friends want to be friends with me? Why should they have to accommodate my need for isolation, deep conversation, seriousness, and silence when they, to coin a phrase, just wanna have fun?
My usual response to this situation would have been to isolate myself from those friends. Convince myself that they hate me and then gradually lose touch with them. I’ve done it before. It’s a pattern.

This time I reached out to one of those friends. She came back with a list of reasons of why we’re friends. Reasons that I can see are valid and not just lip service. She’s one of the jewels in my life.
I probably need to contact the other two, ask why they are my friend. It’s a very vulnerable thing to do, to take my mask off even further. It feels so very self-indulgent, so childish, so much like I’m fishing for compliments.

I’m not. I’m trying to understand…

and be understood.

*Diagnosis – this is one of those instances where I’m using a word even though I disagree with it for myself. Diagnosis comes from the medical model and assumes that autism is an illness or a disorder. I prefer the word ‘identified’ and that autism is a naturally occurring difference. That what makes autism a problem is society’s inability and unwillingness to make room for those differences.
I also accept your right to use the word you choose, if you are autistic.
I also hold it lightly. In the context of children and adults who are profoundly affected by being autistic within our culture, I don’t have enough knowledge or experience to make any kind of rigid stand here.