As stereotypical Brits we all hate the heat (then again we also hate the rain), however, when you have autism (ASD) and consequently sensory differences, a little bit of sun can be almost impossible to cope with.
As I will always emphasise, ASD effects each and every person differently, that’s part of the reason we call it a spectrum. I can only write based on my own personal experiences so what I say may not help everyone but I hope it can least help somebody.
As my sense touch is heightened one of my biggest issues is finding clothes that are comfortable yet cool enough to wear in intense heat. Admittedly finding any clothes that suit my sensory needs whilst remaining fashionable and flattering is a challenge, but that’s a whole other blog! Personally I can’t bear feeling any of my skin touching other bits of skin. This becomes even more uncomfortable if I’m sweaty so even a vest top can become irritating after a while as I begin to feel my armpits rubbing together. Shorts are an even bigger issue as to avoid my inner thighs rubbing they have to be tight around the crotch whilst also reasonably long. When sitting for a long period of time I often drape a thin blanket across my lap and dip it in between my legs. I also don’t like feeling my hair on the back of my neck so the neckline of my tops also needs to be quite high, I’ve found that collared shirts work really well for this and their often very thin too.
A second problem I have is that if one part of my body is more exposed and colder than the rest the whole of me feels cold. If I’m wearing shorts and a t-shirt but then put a jumper on when the sun goes in I may begin to shiver even if it’s still 20° or more outside. If I’m in a car and someone opens a window or puts on the AC I feel it far more significantly than other people, especially if it’s only coming from one direction or isn’t equal on both sides. So over the years I’ve found that I’m much more comfortable being too hot than even a little bit cold.
The one part of my body I cannot bear being hot is my feet but I struggle walking around bare foot as I feel every little crumb on the soles of feet. To put this in context, last night my extremely diligent mum thoroughly vacuumed and mopped the entire house, yet I still found myself walking around on tiptoes and wanting to flick small bits of dust off of my feet. I literally feel everything so I either wear sports socks which absorb sweat or walk around in my slides.
All my life my main stim has been fiddling with a blanket or a rag in my fingers, I particularly like it cold but this is hard to maintain when your palms are clamming up and holding anything just makes your hands hotter. An additional add-on to this problem is that I get very dry hands and have eczema due to me not liking the texture of towels and not drying them well, so when I’m constantly feeling sticky it’s not a great idea for me to frequently wash my hands as one normally would as this makes my eczema flare up and can cause pain and discomfort.
Over the years as I’ve matured and learnt to understand my condition better my tolerance has improved and I’ve found ways of coping but it’s not just touch that is an issue.
Bright sunlight can be very difficult to deal with for anyone who, like myself, has an increased sense of sight. As a kid I was obsessed with sunglasses and my parents would often tell me it was rude to wear them when having a conversation. It’s only now that I understand wearing them was a need not a want.
On a slightly different note, when the sun comes out the societal expectation is that one should socialise. Family barbecues and summer parties are a big thing but for anyone that has social difficulties and/or anxiety this can be very stressful, especially when trying to cope with sensory overload.
So here are my top 5 tips for dealing with heat:
Find clothes that you find comfortable, ignore the fashion of the season, shop for you!
Always make sure you have a pair of sunglasses or a hat with you.
Wear multiple layers and/or take spare clothes, that way you can regulate how hot or cold you are no matter what situation you are in.
Know your limits! Just because it’s hot you don’t have to go outside!
Stay hydrated and don’t forget to eat. It sounds obvious but when dealing with multiple discomforts one can often forget the basics and sometimes that may be all you need.
I hope this has been insightful and potentially helpful, if you have any questions feel free to leave a comment. And if you want to know more about sensory differences visit the National Autistic Society’s info page here.
I’ve now had my VNS implant for over nine months, that’s the same amount of time that it takes for a baby to grow in its mother’s womb. And as much I’d love to say VNS has created a whole new life for me, it’s not quite that simple.
The five months since I last wrote an update have been pretty crazy. At the end of April until the middle of May I went 4 weeks and 6 days without a single seizure. It’s the longest I have been seizure free in probably almost ten years and for the first time in my life the idea of not having seizures didn’t petrify me. During that time something seemed to click, I felt like I had come to terms with my condition and was ready to face whichever direction it took me in next. Unfortunately, a couple of weeks ago things begun to get worse again.
I had a cluster of three seizures and after the third experienced really bad Todd’s Paralysis, barely able to talk for over an hour. Due to the fact that we’d been experiencing stress in our family, on top of the pandemic that’s currently running havoc across the world, I assumed this was just a blip but my mum contacted my epilepsy nurse nonetheless.
I was supposed to see my nurse back in May but due to COVID the appointment was initially postponed until the end of August. Luckily we were able to get an appointment to see her last week. The thing with VNS is, it cannot be monitored or altered by anyone other than the epilepsy nurse (and her magic wand). For me, not being able to obtain any data reduces that sense of control that VNS should be giving me, so having to cancel that original appointment really stressed me out and left me feeling frustrated.
I explained the three different modes of VNS in my previous update, so if you’re not aware of what they are go check it out here before reading on.
At my previous appointment the auto-stim was triggering on an average of 20 times a day, one of the changes we made then was increasing it’s sensitivity during the day and it is now triggering on an average of 42 times a day. This is good as it means it’s doing a lot of work, unfortunately a lot of the time it’s picking up false negatives and I’ve been finding that the device goes a bit wild if I’m out walking and talking, causing my throat to dry up and making me feel like I can’t breathe.
The auto-stim activity generally seems to peak at about midday and 9pm. It makes sense that it’ll perk up in the early afternoon as that’s when I tend to do so too but I’m rarely doing anything other than sitting in bed on my laptop at 9pm. I also noticed that it seemed to almost go to sleep at 3am, the time when I most frequently begin to have seizures, so weighing up all the data we decided to increase the night-time settings from 12am-9am to 9pm-10am, as well as increasing the strength of normal mode during the night and equalling out the auto-stim sensitivity levels.
It took a few days for me to get used to these changes, any increase in power is always painful at first but I definitely seemed to tolerate it a lot quicker than the original increase at the start of the year.
Since then I have had one more nasty seizure, my parents are assuming it’s due to my body readjusting to the device as I experienced a small increase the last time we altered things too.
As my last seizure was only one and not a cluster I got up much quicker and could feel that the Todd’s Paralysis was also messing with my left leg, I couldn’t put any weight on it and actually ended up falling, making a very loud bang, in the evening. My left leg is already a bit dodgy, as due to hyper-mobility I have a slightly twisted hip, so this resurge in Todd’s Paralysis is concerning.
One of the other things I missed out on due to COVID was my blood test that I’m meant to get done every three months. My main AED is called Phenytoin, it’s one of the oldest and most efficient anti-epileptic drugs out there but if the levels get too high in your blood in can cause severe toxicity and make you very ill, so I get a blood test frequently. My GP refused to give me a blood test form, due to the fact that there seems to be unofficial rule to only hire rude people as receptionists and also COVID, but my consultant booked me in for one at her hospital. The plan is that if my levels are not elevated, we can discuss increasing my phenytoin dose to battle the recent increase in seizures.
I do find this sudden increase frustrating as I was hoping to reduce and even wean myself off of my second AED by the end of the year, I hope that if we increase the phenytoin dose I’ll be able to get my seizures under control and at least partially combat the Todd’s Paralysis too. Right now that is my priority and I just hope my amazing consultant has some ideas (I’m due to see her at the start of next month).
I know that this has been a very long blog, discussing a lot that is on my mind right now but I’ve received several comments on my previous VNS updates so feel it is important to keep writing about everything, not just for myself but others as well. Despite all the ups and downs and the general chaos currently wreaking through the world, I’m still maintaining a reasonably positive outlook. The simple fact is that I going nearly five weeks without a seizure, outweighs the negativity of my recent increase, it seems what ever clicked back in April has remained in place.
As my conclusion I want to say that I feel part of that perspective change is down to Young Epilepsy. I’ve worked with multiple charities in the past but no other organisation has ever seemed so certain of what it is that they need to do. Joining the Young Reps group has given me a new focus, an outlet and a group of other young people riding in the same rocky boat as me, always there if I need some empathetic (and not just sympathetic) support. I really admire all the members of staff I have worked with so far and can’t wait to keep helping them move forward and up.
Going through some old files recently I found some letters and notes written by child Susanna. Letters and notes that are distressing and need to be seen as they highlight the full effect that Autism has on a child. Today is World Autism Awareness Day, so I figured what better time to share them than now….
This is the earliest, I believe I was about seven or eight at the time I wrote it as I wasn’t yet using pen and that was when I first became interested in films (something I mentioned wanting to get involved in on the opposite side):
As a child I never intended to misbehave. As this note so clearly states I was simply unable to vocalise the frustrations I was feeling which meant the anger just continued to build inside of me and the only way I had to release it was to lash out at others.
Despite me being aware that this wasn’t in my control, from the moment I entered formal education I was labelled as naughty. I spent more time standing outside the Headteacher’s office, on display to the school, than I did in actual classes and as you can see this had a profound effect on my mental wellbeing. No child should even be aware that killing one’s self is a thing let alone feel like they want to do it.
In these hard times I am struggling and with the whole family locked up in one house tensions are running high at the moment. Even today, every single time I lose my cool I’m filled with these same emotions. I just want to be good but when things get too much, ‘my mind sort of stops’ and I just can’t control what I feel or do.
The next two letters are written directly to my mum. Over the years I’ve written many apologies and explanations to my mum. I’ve always struggled (as mentioned above) to discuss my feelings so I write instead, that’s why I begun blogging, as a coping mechanism. These letters come as a pair but deliver two very different messages:
I find this first letter rather humorous. I mean what kind of 10 year old can use the word ‘privileges’ in the correct context? But as innocent as the message seems there’s more to it. I didn’t receive my own room for another eight years and even now I still crave that sense of ‘space’. Because of my autism I have heightened hearing so even when in my own room it’s hard to totally separate myself from stressful situations.
In regards to the privileges I requested, it was round about this time that, maybe because of this letter, maybe not, I was allowed to stay up one hour later than my sister once a week to watch Bleak House with my mum and ever since then period drama has kind of been our thing.
This second letter is actually the one that I find (out of all of them) registers deepest with me:
As some of this is written in yellow which is hard to read I’ll translate:
I have realized that I’m useless at everything. I’ll never ever get my level five or be good at netball or ever grade in karate.
When I found these two letters I was feeling low and ‘useless’. It was hard to accept the idea that I’d been feeling the exact same stuff for over 14 years and nothing had changed. But then I read that list, the list of things 10 year old Susanna would never do and I realised I’ve done them all.
The most significant was ‘my level five’ which refers to my Year 6 Maths SATs exam. I was only predicted a Level 4 and was being privately tutored by the school Maths teacher in order to improve my chances. However, both her and my class teacher were pretty certain that Level 5 was out of the picture.
But on results day as the teacher, rather insensitively, read all the results out to the class she took a little gasp before announcing that I had in fact got the passmark for Level 5. My mum was helping my sister’s class with an event so I ecstatically asked if I could go and tell her. As I pelted down the corridor filled with pride and joy I ran into my tutor before bursting through the doors to the main hall and leaping into my mum’s arms.
I’ve been trying to cling on to that feeling of achievement recently, reminding myself that I may be on an extended hiatus but I’ve achieved a lot. I may not match up to societal expectations but despite everything I’ve got a bloody Masters!!!
The date of this final letter is a guess made by my dad and it’s only now that I’ve realised just what it may be about…
If my dad’s prediction is correct, I believe this was written shortly after I started secondary school, potentially when I got suspended for 24 hours for losing control and lashing out.
I found it really hard transitioning from primary school to secondary school. I went from a familiar environment with people I’d known forever to a place where I knew no one. I was an outsider and struggled to make friends, I also couldn’t cope with the increase in workload and need for organisation. I was bullied from the moment I stepped foot in that school until the moment I left and for six whole years received barely any support. I was simply punished, made to feel like everything I did was wrong even when it wasn’t in my control.
The sense of guilt and responsibility mentioned in this letter still runs through my blood and dictates so much of how I feel about myself.
The reason I’ve chosen to share these personal letters is to emphasise that, none of the negative emotions mentioned in these letters have ever left me. Autism doesn’t just go away. Yes I’ve learnt to understand myself better, I’ve taught myself ways of coping and I’ve overcome specific issues but my brain will always be wired differently to that of a Neurotypical person.
I genuinely believe that if I’d been diagnosed earlier, received support throughout my education and generally just been better understood, my life would be different. I could show you many more files that prove just how much I was let down by the education system but that’s not the point of this blog.
To summarise it all here is one last picture, one last note written by child Susanna. It says it all and I think the only thing that’s really changed is that about 14 years on from writing this I now know the answer to number four, the answer is Autism:
At the start of this year the one commitment I made was becoming a member of my local gaming club. Every Thursday night I spend four hours playing role-playing games (RPGs) with a bunch of awesome people (the club also hosts boardgames). Campaigns are run in four week blocks, giving everyone a chance to host and/or participate in a wide variety of different systems.
So far this year I’ve been part of three very different games. The first was a Nemesis campaign in which the player characters were members of a catholic cult fighting satan in 1961 Durham. Character creation in this system is done mainly randomly via dice roles and it just so happens that my character’s main skill and passion was driving. As someone who will never drive in reality, being THE driver of our team felt amazing. The past few weeks I’ve been developing a new character for our current Dungeon Fantasy campaign, essentially she is a half-orc which means she has witnessed prejudice her whole life and consequently has anger issues and a need for approval from others. Anyone who knows me will agree that sounds pretty familiar. You see, the possibilities within RPGs really are infinite. You can be whoever, wherever, whenever you want to be and simply forget all of your real-life deficits and struggles. Or you can embrace them, use them to your advantage, witness first-hand what it is like to beat the odds and destroy an entire cave of goblins and ogres despite your issues. RPGing really is pure escapism!
However, it’s not just actual playing that I find enjoyable and calming. Being the creative that I am, I really enjoy character creation. In more complex systems like DnD or Pathfinder (which was my second campaign), coming up with a character build that’ll actually be useful during gameplay and also has a decent backstory takes a lot of thought and focus. Last year whilst hangrily waiting for my surgery, I retained a small amount of sanity by turning one of my favourite illustration characters, Froggo, into a DnD Druid and then the next day whilst recovering and waiting to be taken home, I drew him in his new fantastical form.
Post-surgery whilst I was really struggling mentally I found solace in creating more DnD characters, some of which I really hope I get to play in the near future. Now that I’ve learnt the basics of Pathfinder too I’m hoping to build loads more awesome characters within that system. Not only does character creation help me escape, it is also beneficial to my art work. Character design is unlimited, so working within a system gives me a chance to create fully developed characters that I can then illustrate and maybe even animate.
For me every aspect of the RPG world acts as a form of escapism. It is by no means a hobby for all but it’s definitely one I’m glad I chose to pursue. Right now it gives me a reason to leave the house at least once a week (though due to this virus we are currently meeting-up digitally) and something to focus on when my thoughts become dark. I’m hoping to run my own campaign in the next month or so and really see this as tool for personal development in multiple ways.
So if you’d be interested in hearing about my characters and adventures in more detail let me know!