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.

 

 

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?

Sensory Issues Part 1 – Touch

One of the key elements of  autism is having sensory differences. This can mean that we are over sensitive or under sensitive to any one or a combination of the senses. It can mean that we either avoid or seek out sensations. Some things we are so sensitive to that we experience it as painful. This could be (and has been reported as such by some autistic people) what is behind some autistic melt downs, especially if the autistic person is non-verbal and does not have an alternative way of communicating their distress at sensory overload.

I’ll describe what goes on for me with the hope that if you are (or suspect you are) autistic then it might help you in your own journey of self-discovery. If you’re not autistic then maybe it will inform how you behave with any autistic people (child or adult) that you meet, perhaps treating them with greater kindness and understanding, maybe even helping them to resolve whatever is overloading them.

Let’s start with touch as that’s the one I’ve been most aware from an early age (although I had no idea it was autism-related). As a child (and still now, obvs) I couldn’t bear the feel of rough textures on my fingers, hands or feet. I couldn’t bear nylon socks (the new fangled, easy-to-wash fabric that everything was made of in the 60s and 70s) or crunchy nylon nightdresses, although I loved the smooth, silky feel of the care labels on the night dresses. I avoided rough fabrics or surfaces but sought out smooth and silky textures. I hated the itchy woollen blanket on my bed but loved the satin edging to it up around my face.

To accidently touch a rough or crunchy fabric is, for me, like fingernails down a chalkboard. It makes me shudder, sets my teeth on edge and makes me dance around, shaking my hands to try and get rid of the rough feeling. To touch something smooth is soothing and calming.
This ties into one of my avoidance strategies and a couple of my stims.
I once had a boyfriend (not a very nice one) who noticed that I habitually tucked my thumbs inside my curled up fingers. I had never noticed that I did that. He picked on it and told me not to do it (told you he wasn’t very nice).
Only once I self-identified did I twig that doing this protected my fingers from touching things, even the nice textures; you can have too much of a good thing you know. It is also about keeping my skin hydrated. I do not like having the skin on my hands or feet feeling dry and tight (or have anything ‘drying’ on them, for example flour or dust). This creates a physical tension inside me, like a coiled spring, until I can wet my hands or put on some handcream. As a child, the skin on my feet used to split right across the balls of my feet when I wore nylon socks in synthetic shoes.

My most frequent stim is that I constantly run my fingertips over my thumbnails and my thumbs over my fingernails. If I wear nail varnish the stim becomes all-encompassing to the extent that it begins to feel like a sore tooth or an exhausting nausea of over-indulgence and I have to stop. I also constantly touch the back of my teeth with my tongue, with the same over-stimulation impact, when I’m tense.

I can wear (natural fibre) socks so long as I have shoes on. I cannot stand to be in stocking feet.
I cannot walk on carpet in bare feet.
When I shop for clothes the second thing I do (after pre-selecting colour) is to touch the fabric. It’s a feather-light touch, just in case it’s an unbearable fabric. You can’t always tell just by looking what the fabric will feel like.
I can only wear loose-fitting clothes made from soft, draping fabrics.

Watching me you might not see any of this, other than perhaps my twiddling fingers, but it’s like a volcano inside.

Part 2 I’ll talk about Sound. Hope you come back to take a look.

 

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.

Snotty bitch or boring nerd?

There’s a thing that happens to some autistic people (maybe all? I don’t know since I’ve not met all of you). It’s called selective mutism. Now, to begin with it’s a misleading phrase. It makes it sound as if we choose to be mute when it suits us. We don’t. I have no control over the times when my brain and mouth don’t connect, nor when my mouth goes into overdrive.

Let’s take the ‘snotty bitch’ scenario first.
There are times when I cannot make any words come out of my mouth. I can be sitting at a table at a social event with a perfectly nice person beside me and be unable to speak. Inside my head there’s a voice saying “Just say something, anything. Pleeease”.
Insect, Grasshopper, Cricket, Green
Yeah, crickets.

The accompanying feeling is as if I’m pushing against a stretched-taut piece of cling film, or wading through treacle. There’s this tension of attempted forward motion against resistance and the resistance wins. It happens with strangers and close friends.

As a child I remember hovering at the top of the stairs at night, wanting to shout down to my mum, trying to make the shout come out and failing. It stuck at the back of my mouth. The ‘want’ versus the block in my throat is painful.

Another time, sitting around a campfire with friends playing word games, full of silliness and hilarity, unable to dredge up anything to add. It’s excruciating. There is nothing more lonely than being surrounded by people having fun and yet utterly on the outside, unable to connect to the fun. I’d rather be on my own than have to feel that.

Meeting online friends for the first time in-real-life and unable to summon any of my written eloquence. Unable to look at them, smile at them, or hug them. Locked behind my perspex screen that keeps all the terror and panic shut down. On the outside I appear serious, aloof, and unfriendly. On the inside I’m sobbing with the unmet need to connect.

So, what about the boring nerd?
If you happened to meet me on one of my more voluble days, you would tell me that I must be lying about my mutism.
I have no idea what the switch is that turns me into the boring (I’m assuming) nerd that you can’t shut up. For fifty two years I had the “Shit, I’ve done it again.” moments, with no idea what ‘it’ was. People’s eyes glazing over, or them simply walking away from me mid sentence or interrupting and starting a completely new conversation when I hadn’t even got to the point of what I was saying. Do I try and pick it back up again? Do I join in with theirs (and how the hell do I do that? I can’t read when I’m supposed to join in)? Or do I just shut up and go quiet? Usually the latter. The other two tend not to go very well.

Get me on a favourite topic and I will pin you to the wall with information. Information gathering, pattern recognition, and then synthesis of new perspectives are some of my skills, and I have a huge enthusiasm to share. The subject is fascinating, or thrilling, or shocking, depending upon the topic, and you really ought to know all about it. There are so many different angles and perspectives and to do it justice you have to consider them all. Don’t you see?

I’m beginning to learn that I don’t have to tell everything. I don’t have to give all the backstory. I’m not being dishonest if I omit all the detail (honesty is an unbreakable rule). I can tell myself to shut up. I can water myself down. And it hurts. I lose some essential part of me.
And I watch neurotypical people talking and think, “But they’re not listening to each other either. And how can they find all that small talk interesting? How can they talk for so long about nothing at all?”

I’m lucky in that I have a few jewels of friends who generally find my intense interests, well, interesting. Still, I’ve learned to ration myself (mostly). To remind myself to ask about their stuff, too. Some of the time it works.
There are also those dark times when I cannot imagine why they are my friends. I’m so serious, so nerdy, so heavy and, when the mutism kicks in, unable to join in with the fun stuff or maintain it for any length of time. Depression is a bitch.

There is some middle ground.

If the setting is ‘professional’, I drop into my role and perform. I can speak fluently and interact effectively. I know my stuff, I can draw parallels with the real world, and I can take that out beyond the current boundaries into something new that moves people on.

If the setting is social it’s so much harder, so my knack is to find a job or a role within that social setting. When I was a member of the PTFA I survived the twice-yearly fund-raisers by taking charge of the bar and serving behind it on the night. I could do that. I had the script off-pat, knew all the banter, and we made a fortune for the school.
The role could be as simple as we’re-here-to-support-Peter. I can do that; sometimes.

Another option is alcohol, which of course has its consequences.

When the stars allign and I’m with close friends or family that I can trust, and who find the same stuff as me interesting, I can drop into that sweet spot of chatting and laughing.

All of these come at a cost. Talking to people takes a lot of energy and I usually have to retreat later to somewhere quiet, with no people, and build up my reserves again. How long it takes depends upon the intensity of interaction, how much I’ve been able to drop into well-rehearsed scripts (teaching my yoga classes for example), and how well I know the people involved.
( A great analogy here is the spoons theory. Go Google it if you haven’t heard of it.)

None of this is intended to be whiny – my apologies if that’s how it comes across.
I want to be honest; authentic.
I want neurotypical people to catch a glimpse of what’s going on behind the mask; give us some space, don’t write us off, even be honest about what we’ve done to spoil the vibe.
I want other autistic people to not feel quite so alone or maybe have a moment of “Shit, that’s what’s going on!” if they’ve puzzled for years over what the hell goes on in that whole social thing.

About

I’m a recently diagnosed, less recently self-identified autistic woman of fifty five years of age. Fifty two of those years I had no effing clue what was going on other than I didn’t fit in, never had. I spent thirty seven of those years looking for answers, starting with studying psychology at uni and running the whole gammut of weird and not so weird courses, workshops, and counselling trying to fix myself.

I have a brain. A pretty good one, with some interesting extra features when compared with the standard model. I want to use it. I want to contribute.

This blog is the beginning of the process of working out how I might do that without detriment to my well-being. My starting point is to explore what goes on inside my head when others see something they label weird on the outside. And perhaps maybe we can come to a better understanding.

Mismatched Communication

It’s funny how the most mundane of conversations can lead to an opening of awareness.

I went for lunch with two friends and whilst I tackled my masala dhosa, I recounted a conversation with my youngest son. He had accused me of thinking he was stupid. That he had already told me that (the thing that I had just said to him). Why did I keep taking his ideas and presenting them back to him as if they were mine?

Cue beam of light brightening the dark corner of “I’ve done it again? What did I do wrong?” that has plagued my social interactions for as long as I can remember. Little bits of information coming together to make sense of this mystery.

“No, no,” I said to him. “In my head, I’m not telling you to do something. When I repeat what you say, what’s in my head is affirmation. When I repeat what you say, I’m either confirming that I agree with you or I’m repeating it as a means of processing what you just said.” (Little bit of back story; I have problems with auditory processing, which until I read more about autism and sensory overwhelm, I had labelled as a-bit-deaf-when-there’s-background-noise-of-any-kind.)

Penny-drop. Echolalia. My kind of echolalia. It doesn’t sound like the classic autistic echolalia that we read in text books, but that’s what it amounts to. And why I think I do it; either an attempt at reciprocity or to take in and understand what’s being said. That’s what’s inside my head. This may or may not be true for other autistic people.

Back to my masala dhosa lunch…

Mysore Masala Dosa. Recipe, How to make Mysore Masala Dosa ...
These two friends are part of a small handful of people who I’ve told I’m autistic since I self-identified three years ago or got a formal diagnosis a few months back. (Late diagnosis; I’m fifty five and spent fifty two of those years thinking I’m broken.)
They’ve listened to me as I’ve tried to work out WTF is going on. It’s a big ask, as the saying goes.

Earlier in the conversation I told them that I was appreciating more and more just how often I am off-the-mark in everyday conversations. How much I hadn’t realised it and blithely carried on, thinking I was good at this communication lark.
I asked them to let me know when something I said was off because the last thing I wanted to do was hurt them.
One of these friends confirmed that she had been getting more and more annoyed with me. She hadn’t told me. We were in the territory of losing another friend and not knowing why. She couldn’t remember any specific examples, or was wanting to be kind. Probably the latter; she’s a kind person.

At the telling of my son’s I’m-not-stupid.-That’s-what-I-just-said! story, she sat up straight, looked at me and seemed to come to a decision. “That’s what I’ve been feeling,” she said. “That you think I’m stupid or something”. Nothing could be further from the truth.

My attempts at social bonding come across as insufferable-know-it-all-ness, whether it’s down to echolalia or my pin-you-to-the-wall enthusiasm for my latest favourite subject. It’s not my intention, but that’s kind of irrelevant. It’s how I’m perceived.

So, I make a plea to all neurotypical people reading this. If something seems off, tell us, with specific examples. Be courageous. Be honest. Or just be plain, bloody, mad at us, but tell us. We can’t read your minds. You can’t read ours.