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Sensory Issues Part 3 – Visual

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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

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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

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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.

 

Why should you listen?

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For so long the actual lived experience of autistic people has been either ignored or translated through the eyes, ears and other senses, not to mention the brains, of largely neurotypical people.

The consequence of this is increased distress and decreased well-being for many if not all people on the spectrum (in my world ‘the spectrum’ is a three dimensional thing, not a straightline), no matter how ‘their autism’* looks on the outside.
What you see on the outside may bear no resemblance to what is happening inside us, either because we are masking so well or because we do not have a way of communicating it to you in a way that you will hear.

This means that a whole section of society is unable to contribute to their fullest for lack of adjustments and shifts in mindset. Even more, this lack of understanding and accommodation contributes to some of us needing more support than might otherwise be the case.

And that’s just the economics perspective.

More important is the human cost. I want to contribute. I want to make a difference, however small, to the society I am part of. And I want to do it in a way that doesn’t harm me and send me into burnout or suicide.

The recent #TaketheMaskOff campaign has challenged me to come out about being autistic (more on that later, trying very hard not to sidetrack, not to pin you to the wall with information). Baby steps. I’ll start with this blog, albeit incognito for now. Not out of shame, but because I don’t have the energy to deal with the ‘but you don’t look autistic’ and the ‘aren’t we all a little bit autistic?’ responses without resorting to STFU.

So, welcome to this exploration of the inside of autism as experienced by this particular autistic woman.

*There’s a whole thing around use of language. Sometimes I get bolshy about it, sometimes I go with mainstream language or with economy of words.
To avoid any confusion, I am autistic. It is the way my brain is wired. It is not a side order or a handbag I carry around. It is not an illness.

(meme courtesy of indentityfirstautistic.org )