Blog posts, musings, and thoughts on life in general

I thought I couldn't be autistic because I didn't have any sensory issues.

Then I remembered how much I hate stickers. Thin, shiny bit of paper that stick to your skin. Urgh. And then they peel up at the edges and when you brush up against them they make a flicking noise... it makes me cringe. I hate going on training courses where they make you wear name stickers. I have learned to tolerate it, but I will take them off as soon as I can. The trouble is, taking them off involves touching them, and then when you try to throw them away they get stuck to your fingers...

While I'm on the subject on thin, shiny bits of paper, I also can't stand receipts. When I was younger I literally couldn't touch them without feeling a bit sick. Now I have desensitised myself enough that I can hold one with a thumb and finger until I can find a bin to put it in. Or I stuff them into a particular pocket of my handbag (which I can then steel myself to empty all in one go). If I'm shopping with my husband or daughter I will just get them to take the receipt. My husband is always telling me off for not keeping them, but, urgh, WHY WOULD I DO THAT???? I can't think of many things worse than a draw full of receipts. Actually, I can. Finding one in the bottom of a shopping bag.

After acknowledging that my dislike of thin, shiny bit of paper could potentially be described as a sensory issue, the realisations came thick and fast.

Toothpaste makes me gag. I have given up completely on cleaning my teeth in the mornings because I've been sick so many times. I can usually manage ok in the evenings but I need to do an awful lot of rinsing and spitting, and if I'm stressed or feeling down, teeth cleaning is the first thing to fall by the wayside.

I'm not even sure I will be able to write this next one because even thinking about it can make me gag... I am taking a break every few words to stare fixedly at other things in the room to try and anchor myself in reality and not get too drawn in. I hate, absolutely hate... oh god I can't even write the words. Let me try another way. I love to paint my nails. It's when they get too long that I struggle. I am lucky to have a very loving and tolerant husband who cuts them for me while I read a book or scroll through Twitter or *anything* to keep my mind off what is happening, because otherwise I will start to retch. I have been physically sick more than once when trying to do it myself. (I had to take a little break just then because I actually did retch a couple of times just thinking about it. I'm now under a duvet with a rainbow blanket next to my face because I really want to finish explaining this.) I will move on in a minute because I don't think I'll be able to fully explain quite how much this affects me without actually making myself sick, but I really want to get across just how distressing this is. Once I start to think about 'it' it gets stuck in my head and it's like it might as well be right in front of me. On a couple of occasions I have been at a friends house and found a discarded (deep breath, deep breath, deep breath) clipping on the floor or sofa and I can still remember those times in vivid detail even though one of them was more than 20 years ago. It is taking every ounce of self control I have not to start heaving again just thinking about them. The only way I can get over it is to force my mind on to something else, like the feeling of my blanket against my face, and the different colours of wool.

Ok, back in the room, even if I've been so traumatised by what I've just written about that I can't remember what I was going to write next.

(Breathe.)

Smell. I have a really sensitive sense of smell. I remember as a kid being convinced that I could smell the difference between hot and cold. When I was a teenager I was really self-conscious about being on my period, as to me I smelled totally different to normal.

I am really sensitive to bright light. I have to have photochromic lenses in my glasses because it's too bright for me outside without a bit of a tint. I've recently started trying out contact lenses, but yesterday I was wearing them in a room with very bright strip lighting and it was glaring so much I had to switch back to glasses! It's like driving in the dark and the rain, when the headlights of oncoming cars dazzle you. It was like that, indoors, with those lights. I could hardly see for trying to blink away the flashes around the edge of my vision.

I've always had an issue with the word 'cribbage'. I'm better with it now, as I'm pretty much desensitised to it, but when I was younger I used to hate it. It felt like it should be made of sticks. (No I don't understand either.)

I have a ridiculous pain threshold. I was always the kid in the playground at school who could stand and take a Chinese burn without even flinching. Once I fractured a bone in my foot and didn't realise I'd done it. By the time I noticed that my foot had been really hurting for quite a while and got it X-rayed the fracture had nearly healed. I still don't know for sure how I did it.

I really struggle to tell when I've had enough to eat, and often don't stop until I feel a bit sick. I find it hard to tell where my body is, generally, and often thought that overeating was for me, a way to really feel my body. I've recently given up sugar completely (including carbs like pasta and bread) and since then I can't always tell when I'm hungry. I am wondering if the fact that my blood sugar is (hopefully!) now more stable rather than up and down like a yo-yo means the feeling I always thought was hunger was more of a blood sugar crash than genuine hunger. I can sometimes tell that I'm hungry these days, but at other times I just start shouting at everyone and get a headache and all shaky, and then realise I haven't eaten!

The 'not knowing where my body is' also means I bump in to things all the time. I am forever covered in bruises from catching myself on door handles. And sometimes I just fall over for no reason. Then of course all the usual stuff - itchy labels in clothes, not liking slippery textures of foods like mushrooms or onions. As a kid I was completely freaked out by manikins and waxworks, but I'm not really sure what that was about. So, all in all it would appear that I do have one or two sensory issues..!!

Writing this has been really quite traumatic in places, so I'm going to spend some quality time with my blanket now.

I've chosen noise as my next topic to explore as it's one that fascinates me, and I haven't quite got my head around it fully yet.

I have a very mixed relationship with noise. I'm a musician by trade, and a music teacher. I LOVE noise. When I was teaching secondary music I could quite happily sit at my desk surrounded by a class of thirty kids playing keyboard while I marked my A level essays, and still be able to pick out the ones who were hitting the demo button instead of doing their work. My classroom was noisy and chaotic, and I loved it.

On the flip side, sitting in a restaurant trying to have a meal I can literally lose the ability to speak, because I can't process the level of noise around me. Or maybe it's the type of noise - people speaking, glasses clinking, plates and cutlery, waiters walking around... I remember feeling a complete failure because every time I would go out for a nice meal with my ex-husband we would sit in silence. I found it really hard to hear what he was saying, even though he was only just across the table, and it was such a gargantuan effort to me to get my thoughts in order to think of anything to say.

I LOVE loud music. I realise I'm using capitals every time I talk about music, but for me it feels necessary in order to emphasise Just How Much I Like It. It's excitement, anticipation, happiness, comfort, and good music often feels like it's filling up my whole body. There are certain pieces or types of music that make me want to climb inside the speaker and curl up with my eyes closed. (There are other types of music that make me want to vomit.) I write and arrange a lot of music for my choirs, and when I've got the basics of the harmonies together I like to turn it up really loud so I can get inside it and feel where it works and where it doesn't. When I used to use a laptop for this my husband would often walk in to the room and find me lying on the sofa with the laptop over my face, music blasting out.

I sometimes find it difficult to process things I've only heard, rather than read or written about. My daughter loves to write stories, and is forever wanting to read out bits to me, but my brain can't catch hold of what she's saying in the same way as if I read the words from the page. I can follow stuff I watch on TV, although I don't watch anything particularly taxing or complicated - but I am much more comfortable if the subtitles are on.

I have an awful lot of music in my head, and it all co-exists quite nicely together. When I'm leading my choirs I can sing along with any of the parts, and often switch between parts multiple times during a song. I have a complex relationship with rhythm, which seems very straightforward to me, but seems to baffle other people who just can't seem to understand how it all fits together. But there's no 'give' in my system - if I'm trying to learn something new and am following someone who's rhythm is just slightly off from where I think it should be I fall apart completely.

I'm not very good at tuning my fiddle. This often makes me feel like I'm a sub-standard musician, but there are days when I just can't hear what the right note is, no matter how hard I try. Other days it's not so bad. If I'm trying to do it somewhere noisy I have no chance whatsoever. Once, I was so frustrated by my inability to hear things properly that I asked for a referral to ENT. This was following a cold, and I was convinced that I had problems with my ears, as things were sounding stuffy and mixed up, and I couldn't focus on things. After undergoing quite a lot of tests, I was told that my hearing was exceptionally good, and much better than most people's. It's only now that I'm realising it probably wasn't anything to do with what I could *hear* but my ability to process it.

I'm not totally sure where I'm going with this post, so I'm going to leave it there. I still don't quite know what makes the difference between a noise I am going to love, one that is going to quietly irritate me, or render me unable to speak, or one that is going to make me feel physically sick. I would love to talk to anyone who has similar experiences with sound - please leave me a comment or tweet me @mummywriter.n

So here goes, the start of a self-exploration of what autism means to me. In this first blog I'm going to talk about stimming.

The term 'stimming' refers to self-stimulating behaviours that are often used by people with autism or other developmental disorders. The most common one you're likely to think of is flapping your hands - my son does this a lot when he's excited! Some people rock, some people jiggle, hum, bang their head, make noises; there's really no end to the variety of stims possible.

My stim is not a very healthy one - I pick at my skin. I've been doing it since my teens, I think, but it has taken me the best part of twenty years to realise why. It's not the easiest thing to write about, as I've always been quite self conscious about it, and how it makes my skin look. I have a skin condition that means I get a lot of little bumps and miniature cysts on my skin and I find them completely irresistible to pick at.

I mostly do it when I'm stressed, and when I've got a lot on my mind. For a while I wondered whether it might be a form of self harm, but that didn't sit quite right as pain was never the object of it, plus I also do it when I'm happy. It's not quite accurate to say it helps me to think things through, because my thoughts don't really follow a coherent narrative while I'm doing it - it's more like the process of focusing on my skin allows my brain to rest for a minute. It's sort of like a car where the engine is running but it's in neutral and just idling - not quite switched off, but not going anywhere, and no particular forces are being exerted on it as it just turns over quietly to itself. I find it really calming.

I know it's not a sensible thing to do, and I know that I ought to stop. I've read a lot about trying to replace harmful stims with safer ones, but in truth I'm unlikely to do that because it makes me feel good. It feels a bit strange to be owning it so publicly after so many years of being embarrassed about it, but I have gradually come to accept it as part of who I am.

I would love to hear from you if you have a similar sim - leave me a comment below! And if you're thinking 'I can't be autistic because I don't flap' - yes, I have had similar thoughts myself.

I have been thinking a lot lately about identifying as autistic, and why - especially as a person who thought I knew quite a bit about autism - it took me so long to realise that I have it myself.

There are still a lot of misconceptions about what autism is and how it displays, particularly in females. When I was learning about autism in the late 90s, the lack of theory of mind was an essential part of diagnosis, and we were taught that autism is much less common in women, but much more severe. As I've been doing more recent research, I've found I don't really identify with a lot of the prominent autistic female narratives that I've found in books or blogs. For this reason I've decided to explore this in a series of short blogs as I get a chance to put my thoughts down, partly as a way of making sense of it myself, and partly for any other women who feel different but don't quite know why.

My life as it is now has been shaped by my autism, of course, but also by the unique set of circumstances that have presented themselves to me, the decisions I've made, and the people I've met. Autism is woven through the fabric of my being but that's not *all* that I am, so it's natural that it will come out in a slightly different way with me than it may do in others. I think it's really important to get a wide spectrum of voices speaking out on this, as each one will add to our understanding of what it can mean to be autistic. If you are reading this and would like to share your own experiences I'd be very happy to post a guest blog.

I recently conducted a small survey to find out how school teachers felt about the issues that looked after and care-experienced children experience in school. I am working on developing some resources to help schools be better equipped to deal with the issues, so first I wanted to hear what the teachers themselves had to say.

The summary of results is below:

What teachers are worrying about:

The top three worries from the teachers who responded were behaviour, the difficulties that the children were experiencing, and the lack of support for staff to effectively deal with these.

Behaviour could be broken down in to three categories:

  • avoidant/withdrawn behaviour, including hiding, running away, refusing to engage with tasks, distraction
  • oppositional/challenging behaviour, including rudeness, refusal to follow instructions
  • unsafe/risky behaviour including physical violence and sexual behaviour

Difficulties that the children faced included:

  • academic difficulties; not reaching potential, low ability, lack of organisation/focus
  • social difficulties; friendship issues, or being overly clingy or interested in other people
  • problems in their wider family, including lack of support from family members
  • mental or physical health issues; not eating, lack of hygiene, self care, mental health problems

Issues around support for staff included:

  • need for support from senior management
  • all staff need to be on the same page with addressing the behaviours
  • getting enough information when the child arrives in school/class
  • availability of support from outside agencies
  • the need to keep the other children in the class safe and able to learn whilst giving time and care to the student who needs it

What teachers find frustrating:

The issue that came up the most was the impact of the behaviour on the rest of the class. Teachers felt they had a lack of space and time to deal properly with issues - class sizes were mentioned a lot, and lack of time was the number one frustration when teachers were asked to list their top three. Support for staff came up second, including support from outside agencies and senior management, and the ability to access training.

Interestingly, although the behaviour and the impact it has on the other children came up a lot in the general question on frustration, when teachers were asked to list their top three daily frustrations, lack of time and support both came ahead of the actual behaviour, which was third.

This suggests to me that teachers are largely accepting of the behaviours of their ‘difficult’ children, as although they are obviously frustrated by them they are more frustrated by the lack of resources/support to help them as effectively as they would like to.

Difficulties the students are facing:

When discussing the difficulties the students face nearly 80% of the respondents said their children had issues with low self confidence and/or self belief. Change in staff members came second at just under 70% of respondents. The other biggest issues were concentrating for the span of an activity, and settling down at the start of a lesson.

Interestingly, none of the respondents said their children had problems with active subjects like PE and music (though it must be noted that this was a very small sample) and fewer people than I had expected said that the end of a lesson was a problem.

If you’ve got anything you’d like to add please do comment below!

If you’ve got an adopted child, or if you are adopted or care-experienced yourself, what would you like to say to your teachers? What is the one thing you would like them to understand about you? Let me know in the comments below!

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