About insideoutsideautism

Recently identified (not 'diagnosed' - it's not an illness) autistic adult dipping a toe into writing about the lived experience from my perspective.

Neurodiversity and Access to the Arts – Part 1

Reposted from an article first appearing on the site Me:Decoded

Here I am again, trying to decide how much detail to go into, autism for the win! I’ll just start writing and then trust to the process and edit later if it’s too hyper-verbal. If you didn’t see my introductory post you can find it here. Tl;dr? I’m a recently, late-diagnosed, now fifty six year old autistic woman trying to find a way to contribute to the world in a way that doesn’t damage me and is authentic. I’ve been writing for many years but always had this niggling sense of not being true to myself; of writing to suit a market, which often denied my voice. The outcome was that I dipped in and out of writing, losing momentum and motivation.

In mid-November last year, a Twitter acquaintance re-tweeted details of a competition to win a place on a play writing course for neurodivergent writers. Organised by Mainspring Arts, it was aimed at existing playwrights and the deadline for entry was looming (midnight that night if my memory serves me well). It appeared at a time when I was wondering about writing as a means of contributing and I had a growing anger at so much that is wrong with the ‘autism sector’.

I contacted the organisers to query if it had to be part of a play submitted for entry or if it could be any writing, since I had no play writing experience but was interested to learn. They said, sure, go ahead and submit another piece of writing. So, at the eleventh hour, and fairly certain it was a lost cause anyway, I sent in the application form and two short scenes from the beginning of a partly-written novel of mine.

A week later I was told I’d won a place on the programme – three x two-day workshops (all expenses paid), two x one-to-one mentoring, via Skype, from an existing playwright, and a read-through performance of the resulting ten minute plays at the Autism Arts Festival.

We’ve completed the first part – the workshops – and I’m waiting (at the time of writing) with baited breath for the mentoring.

The whole process so far, from application to sitting in a seminar room learning about many aspects of play writing, was tailored to the needs of neurodivergent people. We were asked about any specific sensory or support needs we had.

I described how I would need either handouts to read or the opportunity to make notes; my auditory processing issues mean that unless I can see the words written down, I won’t hear them very well. Related to this I would need quiet surroundings to not have auditory overwhelm.

I told them how I would need to sit at the back of the room so that there was no-one behind me. I would also need somewhere to go at breaks and lunchtime in case I needed to be alone or not feel pressured into trying to be sociable.

I also suggested a signal so that if I went into hyper-verbal mode then I would get a visual to tell me to shut up J Another important aspect was scope to ask questions if my literal interpretation of what was said didn’t make sense in the context. We were also asked if we were happy to have a dog present – I was delighted at the idea. Animals are very soothing to me.

All of these needs were met other than some kind of agreed signal for my hyper-verbal tendencies but I’m not aware that I did my pin-them-to-the-wall routine. That’s no guarantee I didn’t!

Additional things they provided included laminated cards to indicate – without needing to speak – either the need for support or to show that we did or didn’t want to work in pairs. I loved this last one because I really don’t like paired work in this kind of setting; it’s too reminiscent of being picked last in school for P.E. teams or class work. Also, the organisers scattered Tangle Toys on the desks in the seminar room and down in the social area.

They also arranged overnight accommodation for those of us from outside London – a bog-standard Travelodge, which was great because you know exactly what you’re getting. All we had to do was turn up. Ahead of the first weekend they sent us photographs of the workshop venue rooms and maps of how to get there from our accommodation. All these things helped me to be less anxious as I could prepare ahead of time.

The workshops content was wide ranging, with a different playwright for each day. Themes included, perspective and conflict, structure of plays, point of view, use of monologue, place as a stimulus of ideas, and forms that plays might take. The one that spoke most loudly to me was the one by the playwright Isley Lynn where she emphasised finding the untold or mis-told stories.

So far so good. One thing, however, that became obvious as a barrier to increased participation in play writing for me as an autistic person was seeing that play writing – assuming a play is performed – involves much more face to face contact than I’ve ever experienced in writing and publishing novels or short stories. To put on the play, the playwright needs, at the very least, to work with directors and actors. We’ve yet to get to this stage on the programme so we’ll see how that goes, probably March or April time. If nothing else, it will inform any future programmes aimed at increasing involvement in the arts for autistic people.

Next step is my mentoring. Expect to hear some more from me about that process in a few months.

Autistic Joy and Other Good Things

I started to write this months ago and then blocked because I couldn’t capture enough moments to fill a blog post even though I knew there are many instances of Autistic Joy in my days. This morning I had coffee-moment and so I decided to post this regardless and just add to it as the Autistic Joy happens.

I stole the idea for this blog from a Tweep. Erin Ekins suggested that alongside the difficulties of being autistic in a neurotypical world, that we also consider autistic joy – our ability to find huge joy in the smallest of things. I love it. I decided to extend the idea and include the things I love about being autistic.

Huge joy in the smallest of things.
I remember the moment, as a child, when I discovered the answer to ‘what’s inside cuckoo spit?’. I used a strand of grass to push aside the bubbles in the little glob of ‘spit’ suspended on another blade of grass. I was in my secret den, AKA a little patch of hay meadow, that I’d rolled flat with my body, creating a secluded space away from people, and up-close-and-personal with nature. I loved (and still do) the small things, the hidden things that no-one else notices. So inside the spit was a tiny insect; a froghopper nymph. It was joy and revelation to know what was in there.

Joy in the clasp of my husband’s hand when we go to sleep holding each other’s hands. It’s not every night I remember to appreciate it. More often than not it’s habit.

The beautiful and perfectly formed stream of coffee from the new cafetiere my husband bought me for Christmas. No splashes or splutterings or non-existent pourings of my old faithful supermarket-standard glass-and-plastic coffee press. Now a beautifully crafted thermal jug with a perfect spout.

And the positives of being autistic. Here’s a starter – infographic included with permission from Harriet Cannon.

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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?

Sensory Issues Part 2 – Sound

The second most sensitive sense for me is sound.

For a time there in my early thirties I thought I was going deaf. I had always had hearing and ENT problems as a child (or maybe I was just autistic?) and so thought this was a continuation of some sort. I saw a consultant who, after tests, told me that my hearing was perfect. So, why could I not hear what was being said if there was any kind of background noise, I asked. He told me it was because I was born prematurely and my inner ear hadn’t developed fully and so it or my brain coudn’t process or distinguish sounds when there was a lot of auditory input. Hearing aids wouldn’t help and the only solution was to learn to lip-read. At that time I had two young children, worked full-time and so had no spare time to take lip-reading classes. Besides, I kind of already did lip-read, and still do. If I can’t see your mouth when you’re talking, I can’t hear you. I can’t process your words.

Roll forward to self-identification and my rabbit-hole autism research and I read about something called auditory processing disorder (there are similar processing disorders for the other senses, too). Aha!
When there are multiple auditory sources, I cannot process them. I cannot pick out the one relevant source – your speaking voice –  and cancel out all the others – background music, the television, other people in the pub, traffic noise, the fan on my computer… you get the idea.
My hearing is actually very sensitive. When we first moved into this house, at night I could hear the pump of the underground reservoir some distance to the back of our house. At least that’s what I think the noise is. It drove me nuts. Last night I could hear it through my mattress – until I put my ear plugs in.

I cannot process information if you simply tell me. I need to see it in writing – whether pre-printed or written down myself as you talk. Alternatively I need to see something done and actively do it myself to either take it in or to learn something new. I cannot easily process the spoken word. I struggle with tv programmes if the speech isn’t clear and have to rewind and watch key bits of dialogue to follow the plot. I can’t tell you if I like a movie unless I’ve seen it a couple of times to let me process it fully.

If you want to tell me something important, you need to be absolutely certain you actually have my attention otherwise it might not go in. I will not hear anything you say if I am focusing on something else – hyper focusing. It’s what many autistics do. If I’m reading, all of my attention is on what I’m reading and no auditory input is going through. I’m not being ignorant. I can’t hear you.

I hate using the telephone. I can’t process the words fast enough to answer in a way that I can be certain is the right response. I have to ask people to repeat themselves. I have to write it down as I listen to be able to take it in. I much prefer email or text.

This doesn’t necessarily mean I don’t like any sound. I love sound. I love loud music – but only my music – I cannot abide Jazz. Remember that fingers-down-a-chalkboard feeling I talked about in the last post? That’s me and Jazz. I cannot bear it. For a while I kept asking why do I  love Blues so much but hate Jazz. What is it musically that makes that happen. Now I can let go of that and assume it’s part of my processing issues.

I will use music as a barrier to all other sounds if I want to concentrate on reading or writing. Sometimes with lyrics (the words just wash over me anyway) sometimes without.

For some autistic people sound is excruciating. I saw a man in a T.V. programme who reported that he can hear electricity humming through the wires in the walls. Some people wear noise cancelling headphones to simply negotiate the everyday world without being overwhelmed. For me, when I reach overload, I get a kind of nausea deep inside and I have to retreat to silence.

So, again, a request. If you know someone who seems to zone out and not hear you, they might not be being rude. If someone wears headphones, they might not be being anti-social. If a child is covering their ears in distress they might be overloaded.
Give us space. Look at what you could do to help. Want to meet up for a chat? Suggest somewhere quiet without canned music and bouncing hard surfaces everywhere. And don’t make a big show of it.

We’ll love you for it.

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.