Keep on stimming, keep on stimming…

I have ranted and talked a lot over the past few days about frustration and bad days, so to change pace a little, I want to talk about stimming, and what I find myself doing. For those who don’t know, stimming, or self-stimulatory behaviour is repetitive action that can occur when anxious, upset or even excited. It’s important to stress that stimming is not limited to people with autism, but it is often associated with autism. Stimming can be in many different forms. Some people will flail their arms, others may make the same sound repeatedly, and some may do things that could potentially cause injury. Whilst injury is not something anyone wants, it is important that stimming is not suppressed or made to be a bad thing. It is very much a coping mechanism to help with situations that could possibly overwhelm, and even potentially lead to meltdown. I thought it would be good to talk about my main stims to give a better understanding of them.

I am very much a tactile stimmer. You will often see me twisting my fingers over and over, or shaking my hand, or even doing an odd looking clap (this one I need to video to explain it as I have no clue how to describe it!) I tend to twist my fingers, or count/do math on one hand when I am thinking, and it is always my left hand. I will shake my right hand close to my chest when I am anxious or uncomfortable, and I will do my odd clap when I am happy/excited. I do some other things like biting my finger nails, stroking the cats, but there is one stim that I often get told off for. When I am frustrated, I will hit the back of my head. If you watch NCIS, think Gibbs and DiNozzo. Now most of of the time, it isn’t a hard hit, but occasionally I can really hit myself hard, and so I often have my wife tell me not to do it. I think that is my only bad stim though, and for the most part, I make do with the ones I have mentioned, and with using fidget toys (spinners, tanglers, clickers)

I have some vocal stims as well, and these are normally when I am not wanting to take part in a conversation. Banana is a very common one for me, and I think my wife is sick and tired of hearing banana throughout the day. One that is a little bit odd though is what I do when I am in a supermarket. Since I usually get overloaded very quickly when I am at the supermarket, I have picked up repeatedly saying items on shelves as we walk past them. We can be walking down an isle and I will literally list off everything I see. I will also put shelves in order and face them up (I used to work in a supermarket, so I think because I do it properly, our local supermarket just leave me to it.) There are a couple of other stims as well, but they just seem to happen and aren’t really related to specific things. I grind my teeth a lot, and I also have restless legs, which is usually a precursor to meltdown or anxiety attack. Other than that though, I don’t think there are any other stims that I use frequently.

Hopefully that will help to understand why autistic people stim, and why it is important not to suppress it. Prior to diagnosis I would hide my stims as much as possible as people would stare, or tell me to stop. Now I know what they are and understand them more, I no longer hide them, and use them to help me day to day with processing the world around me.

Until next time though, BANANA!

The frustration is real…as is the outside the box thinking!

I am going to apologize to begin with, I am going to rant again. Don’t run away yet though, because I think it gives an interesting insight to how I think.

Today started off much like yesterday. I had another amazing nights sleep (I did get up once, but drinking close to two litres of squash late in the evening would make anyone get up in the middle of the night!). I had planned today to do some fixing and up-cycling since my wife was going out to see a friend. It felt like it would be an awesome day, and then the frustration hit. See, I had planned on doing two things, the first was trying to make some antenna sleeves for a set of walkie talkies I have repaired. I managed to get hold of some cheap toy walkie talkies, and had planned to use their antenna sleeves to replace the missing ones on the repaired walkie talkies. This wasn’t going to work though, and so, I got frustrated, and then I got annoyed, and finally I started playing random games on Facebook (this tends to be what happens when I lose focus). This is why I try and plan, because I don’t like when things don’t happen when I think they should, but also, I hate when things don’t go to plan. When my wife got home, she managed to spark my brain into its usual out the box thinking though, and this is where the day picked up again.

Here was the problem, I have two walkie talkies that whilst they aren’t cheap, they are not expensive either. This basically meant that replacement parts are non-existent, and so I needed to come up with a solution if I wanted to sell these as working. The idea of the toy walkie talkies wasn’t too far fetched, I needed a stubby antenna sleeve, and a lot of the toy walkie talkies have some form of stubby sleeve. The problem with this plan was that the sleeves I had came in two parts, but were also slightly too short. I could have possibly got away with these, but I would not have been happy selling them knowing it was a real botch job. My wife asked me if the plastic tube attached to one of the cat toys would work, but unfortunately, it was too narrow. This did spark my imagination though. The original sleeves were flexible, and I just need to cover the coils, so I went to eBay and began searching. After 10 minutes, I had a solution, and I was happy once more. I ordered a meter length of pipe for pressure systems (water pumps, pneumatic pumps, that sort of thing) at the right diameter for the antenna, and I ordered a pack of pipe caps to seal the open end. This will give me the right length sleeve, and not look too dissimilar to what was there originally. With these bits ordered, I will have working walkie talkies I can sell that wont injure people if they try to use them!

I do like though that to celebrate this brilliant thought, I decided to strip down a Playstation 3 and clean the dust out which solved one of the issues it has, I just need to get some thermal paste and pads and resit a few components, and that will be good to go as well, so keep an eye out for some eBay listings if you are interested in either of these!

Well, I am going to finish unwinding for the night, and possibly have a hot chocolate before bed to wrap up the day.

May the odds be ever in your favor.

So there was a bad day, bad day, good day!

I have had a bad couple of days, and that led me to not want to human, and so, no blog posts. I kind of feel bad about not posting as I am actually enjoying writing these posts and being able to talk about what is going on. If I was to have a conversation face to face about all this, well, there would not be a conversation. That said, lets go over what has been happening since I last posted.

Well, to begin with I guess I should talk about what I mean by bad day, and what made the last two days bad. Like a lot of autistic people, I have my routines, and I plan pretty much everything. Recently I had ordered a tool set off of amazon so that I could do more restoration and dismantling of things. Amazon said it would arrive Friday before 8pm, but on Thursday I noticed a potential issue. I watch order tracking like a hawk, since I want to make sure I am able to take delivery without disrupting any other tasks I have planned. This order however seemed to not be dispatching, and I was starting to get anxious. Friday morning came around, and I knew I would need to be here for the order as it stated it needed proof of age (there is a craft knife in the tool kit, guessing that is why it needs proof of age). I checked the order tracking, at at 10.10am, it was showing at a royal mail distribution center…in North West London! Now this might not seem like a bad thing, apart from I live just outside Bristol, which is the opposite side of the country. I had planned based off of the normal delivery times, and was expecting the order in the morning like all the others from Amazon, and I had planned to go out in the afternoon to a few shops. By around 3pm, it was still showing as sat in London, so I contacted Amazon customer support to see if it was worth me staying home still, or was it more likely that it would arrive Saturday instead. This is where things went from bad to worse though.

One thing I have been very good at before I got my diagnosis was scripting conversations in my head prior to an actual conversation. This would help mask the fact I had no idea what I was doing, but occasionally, it would backfire. See, when you work from a script and the other person is just talking naturally, you can run into the problem of saying something out of place, or something that causes offense. This is why when possible, I type out things instead of actually saying them, because it removes the issue of articulating verbally what I want to say, and I just let my brain talk through my fingers. What has this got to do with Amazon customer support? Well, having grown up using scripted conversations, I can tend to spot when someone is using them on me, and this was the case with the service rep I was talking to via online messenger. I asked my question which was ‘Since my order is still in London, would it be best to say it wont be here today and to expect it tomorrow?’ Now to me this is pretty simple, and I would have thought for a company that sends orders all over the world, they would have some level of common sense to say ‘I can’t say 100% it wont come today, but seeing it is still the other side of the country, yeah, I would say its delayed til tomorrow.’ What I got instead was very much copy and paste scripted responses, which were not relevant to the question I had asked. I very quickly became annoyed with the person I was talking with, and after 20 minutes back and forth, I asked if I could speak to a supervisor, or someone else. I got some more pre-written statements, and then this person posted the straw that broke the camels back. What appeared in the chat window was a direct copy and paste from another service rep, with their name and a time stamp to boot. I was furious by this point, and stated I wanted to speak to a supervisor to complain. We were now 40 minutes into this, and finally I got transferred to someone from the management team. I explained why I was complaining, that I wasn’t overly concerned about my order being delayed, I just wanted to confirm that was probably the case. A couple of minutes later, the manager had reviewed the previous conversation with the rep, apologized for the fact that the rep had just been copy and pasting, and here came the real kicker, I asked the manager to answer my original question, and sure enough, they said pretty much what I posted above. Placing the complaint and getting the answer took just shy of 10 minutes. This had totally thrown my off for the day, and so I had two bad days, but there was a light at the end of the tunnel.

I have been on about getting a weighted blanket for a while now, even before I started on the diagnostic pathway for ASC. I have never slept properly, to the extent that I have heard tales of my parents putting the stair gate across my bedroom door, and leaving me to play until I went to sleep myself. Now some might say that they weren’t strict enough with bed time routines, and that I have poor sleep hygiene (yes, I have had several GP’s lecture me on how with better sleep hygiene, I would be much better.) Well, getting my diagnosis actually gave me the answer to my sleep problems as well. I couldn’t find the studies I was told about, but simply put, it is not uncommon for someone with ASC to produce less melatonin, and so there are issues with regulating sleep. My biggest issue is actually falling asleep, closely followed by waking up near enough every 3-4 hours, and then repeating the process. I had already learnt about deep pressure therapy for anxiety, but I had also learnt it could help with sleep. Considering I had tried pretty much everything else, I thought what the hell, lets see if this works. My parents decided to buy me one, and it arrived on Friday morning. Needless to say I was eager to see if it would work, so roll around 2am, I head up to bed, pull the weighted blanket over me, and in about five minutes, I was out for the count. This wasn’t the end of the greatness of this blanket though, oh far from it. See, I said about how I would wake up every 3-4 hours, but last night, I slept right through until about 9am. This was amazing for me, I don’t recall ever sleeping right through like that, and to make things even better, I didn’t have the usual cramp/pain in my legs (I usually have restless leg during the night), I had more energy, I was focused, and I felt fantastic for a change. I have to say that I can not stress how much this blanket has changed things for me, but I will say that if you are interested, I have the Highams Weighted Blanket 8kg, and you can find them on Amazon, and they are worth every penny!

I know this is turning into a long post, but there was one last thing I wanted to talk about. I went to the shops today with my wife. Now for most people this isn’t a big thing, but for me, going to shops is hell. There are so many things that can overload my senses that I tend to avoid shops altogether. Today though, I had planned the shops I wanted to go to, I had my bag with my fidgits, my noise cancelling headphones, and my sunflower lanyard, and I went for it. I got some bits that I needed for some projects (my wife still had to pay for them, can’t be at the checkout, and also, no concept of money!) I got overloaded several times from background chatter, cleaning product smell, and lots of people being around, but I did it. Admittedly, I got home and spent an hour stripping two walkie talkies down and cleaning corrosion off of the circuit boards to chill out, but I did it, and so today ended up being a great day.

Anyhow, I think I have bored everyone enough for now, take care and I will post again tomorrow!

*EDIT* I have made a couple of changes on the site, including adding my Facebook and Twitter feeds. Drop me a link and a follow as I post little bits on my social media that you wont always see here!

I’m the sensitive sort, or am I?

A bit late in the day, but still posting (now at 4 days straight posting without a break, go me!)

So today I thought I would talk about hypersensitivity and hyposensitivity. Now this is not something that is just limited to people with autism, but it is certainly something that can have a significant impact on someone with autism. To start off, I need to explain these two terms and what they mean to me. Hypersensitivity, or sensory over-responsivity, basically refers to a stimulus that is so overpowering, it can cause pain, distress, and the urge to escape the stimulus. Now this can be anything, from sound, touch, smell, taste, pretty much anything that triggers the senses. You can probably guess that hyposensitivity, or sensory under-responsitivity is the opposite to hypersensitivity. Simply put, it is where there is a decreased sensitivity to a stimulus. Now we have the brief explanation out of the way, lets talk about what I have to contend with day to day.

I struggle a lot with hypersensitivity to sound, light, smell, touch and taste. This doesn’t mean that all sound, or touch overwhelm me, but there are certain things I will avoid like the plague. The biggest issue is background noise, and more specifically, people talking. The issue comes from not being able to screen out background noise around me, I literally hear everything, whether I want to or not. It’s not too bad if I am in a 1 on 1 situation, or maybe two or three people, but that is really the limit. I try to explain to people what its like by getting them to imagine trying to watch 50 televisions, all set to different channels, set them to full volume, and then listen to each television at once. If the thought of that gives you a headache just thinking about it, welcome to my world whenever I go to a shop. I also struggle with alarms, sirens and beeps (I can’t go near checkouts in a busy store at all). I think part of it is the sudden start to the sound, but also the pitch. You will usually see me cover my ears if I don’t have my noise cancelling headphones on.

The next one is smell, and this in a way could be a blessing in disguise. I can not be around cleaning products. Anything like bleach, multi purpose cleaner, even washing up liquid, I get overload, and tend to feel physically sick from it. The other big issue for me is perfumed products. I have been known to run through the make up sections in department stores because it is just too much to deal with. As I said though, it is a bit of a blessing in disguise as it means I can’t do much cleaning around the house, and I even end up having to go to my parents when my wife cleans so I don’t get sick. The biggest downside though is that I have to use light scented, or scentless toiletries otherwise even washing and shaving becomes a living hell, and that leads nicely to the next hypersensitivity.

Touch is an interesting one, mostly because I wonder how I am married with this sensitivity! I really don’t like people touching me, so things like shaking hands, hugging, having someone tap me on the shoulder, it is actually painful. It is often the case you will see me shuffling from side to side when meeting people or saying goodbye as I am anxious someone is going to touch me. This is not to say I wont do these things, but it is very much on my terms. Linking in with this is texture, there are several materials I cannot stand the feel of, and I look like I have been given an electric shock if I end up touching these materials. Paired in with taste, I also have issue with food texture. There are certain foods I wont eat because of the texture. Pretty much anything that is likely to coat the inside of my mouth and hang around, I wont eat. The texture of most fruit also causes me issues, and so my 5 a day has to come primarily from vegetables (thank god I like pretty much all vegetables!)

Keeping on the topic of taste though, this one is an odd one. It’s not so much the case that I don’t like the taste of something, its more I will know if you give me something different to what I normally have. I will pick up that the taste of oven chips is different to usual, and that is enough to stop me from eating them. This can lead to issues when what I normally have isn’t available and my wife will try and sneak a substitute in. So far it hasn’t worked. It has led to an interesting quirk though. I like a variety of different sauces, but I am picky that the ketchup is one brand, the BBQ sauce is one brand, and so on. I have actually managed to get to the point that if I am given a different ketchup, I can tell you which one it is without seeing the bottle. Taste runs into my hyposensitivity as well though, and also some of my favorite foods.

I love spicy food, and I like sour food. I think a big part of that comes down to I don’t tend to notice spice or sour unless its knock your socks off level. This is great though, because I love curry and sour sweets, and I tend to like ordering something hot and spicy when I eat out if given half the chance as my wife really doesn’t do spicy food.

There is one more hyposensitivity that I have, and it is of a personal nature, but I am going to be open and honest with this blog. I am hyposensitive to the feeling of needing the toilet. I literally get a warning that I need to go…NOW! and this can lead to embarrassment, but is part of who I am. I am learning now (because I know why it happens) that I have to almost plan making sure I go to the toilet regularly to avoid accidents, but its a work in progress, and yes it is embarrassing to say, but it is what it is, and apparently something that several people with autism contend with.

I think on that bombshell of a conversation killer I am going to wrap this post up for today. I wonder though, do you have any hyper or hypo sensitivities? Leave a comment if you do, it would be interesting to find out what others deal with, and how they deal with it.

Just in case I don’t see you, good afternoon, good evening and good night!

My post diagnosis rambling

It has been just over a month now since I got my autism diagnosis, and it has been an interesting month to say the least. Now anyone who has gone through the diagnostic process as an adult will know, it very much focuses on the negative, the problems you have faced throughout life. In all honesty, it is pretty brutal to have to revisit what are often painful memories, and also finding out there are just some things that were so bad you blocked them out completely (I only found out I was bullied a lot in secondary school from what my mum had said in her interview, I have no memory of it at all!) That said, the one thing I remember from the day I got my diagnosis was that it was the end of the negatives, and the beginning of understanding how I think, and the strengths I have because I am autistic. This is the main reason I do not view it as a disability (although there are things that are difficult for me, but that will be another post all together). I have found myself getting really angry and frustrated that being diagnosed didn’t happen earlier in my life, and the what ifs that come up from that. Would I have had a different experience at school, would I have had the support that I have now, would I have dealt with a lot of bad situations differently. This questioning led me to talk to some people and what follows are some of the conversations, all be it with names etc removed.

So the first conversation that sprang to mind when I thought about this post was when someone asked me ‘How does it feel now you are autistic?’ I’m not sure if it was just my literal thought process on this, or they actually thought that up until now I wasn’t autistic, and this somehow just happened, like a new job, or another illness you contract. I really didn’t know how to answer this other than honestly, ‘I feel like I always do, since I have been autistic since birth.’ Truth is, I have always been autistic, only difference now is I have a piece of paper that says I am, and that has led to a lot more support in making life a lot easier to process and yes, I say process, because that is how I think, I process and break everything down around me, and if it is slightly off, then the world is ending, at least until it gets back to what I know. I think the easiest way to explain this is how I explain computers to new people. A computer can do amazing things, but when you break it down to the bare bones, a computer only understands two things, 0 and 1, and its when users try to throw anything other than 0 or 1 into the mix that computers go wrong, and that is very much how I see my autism.

The second conversation that came to mind was when someone said to me ‘Oh but we are all a little autistic, you managed to get this far without a diagnosis.’ This one really annoyed me, mostly because of what it infers to me. The start of this statement to me is like saying, we all came from Africa, so we’re all a little black. If that was the logic, it was flawed, because why would there be racism, and the whole issue of segregation etc. I can’t help but think would that person have made that statement if they knew what used to happen to autistic people? People who were committed for being different, others who were thought to be possessed by demons. What about media and their portrayal of autism and autistic people, I can’t help but think of Dustin Hoffman in Rain Man, but there are others too, and its the servant, non-verbal, meltdown constantly appearance, which is not how a lot of people with autism are. It is a spectrum condition for that very reason. I could rant on about this for a while, but I will stop as there is still the second part of the statement that really got me. Yes, I have managed to get this far without a diagnosis, but at what cost? I had to study and learn about body language so I could try and interpret what people were saying. I would see what people were interested in around me, and go and learn about it in an attempt to fit in with them. I constantly had to bite my lip and suffer around busy shops and crowded events because I could hear every single conversation around me and had no way to block it out. I hated things like washing etc because the smell of things like shower gels is too much for me, but I needed to use what other people used to fit in. This only scratches the surface of what I have gone through up until now, so excuse me if I take offense to what you say when you make statements like this. Yes I will mask, I will mirror and I try to minimize stimming in public, but why should I? I am not Neurotypical, and I tried to be, and it ended up causing a lot of harm along the way, to both me, and my family.

The third and final conversation for this post at least is one that I had to laugh at. It went something along these lines…

Person: ‘Its great you got your diagnosis, although I kind of thought you were anyway.’

Me: laughs ‘Yeah, it’s becoming a trend with people saying that!’

Person: smiles ‘Well, you always were an odd one, I am curious though, do you have any special abilities?’

Even typing that out, I am sat here smirking to myself. I still don’t know what it is that makes people think that because you are autistic, you have some sort of super power, although I am guessing its the medias fault on this one (Damn you Dustin Hoffman and your card counting) I find it entertaining to sit and think about if I do have any special abilities, and in fairness, the only thing is my brain itself. See, I don’t think about things, they kind of just go through my head. I absorb information constantly, and it is something that bugs some people, but also seems to cause envy in others. I am one of these people who can be doing one thing, be told something, and then get asked ‘what did I just say to you?’ and then repeat back was was said. I can hear people going ‘well I can do that as well.’ but here is the kicker, can you walk around a museum exhibit in a few minutes and then tell someone everything that was in that exhibit? How about can you name a film from a couple of notes of a song in that film (and I mean at most four notes). How about remembering an entire films dialog and then annoying your family every time that film is on by saying the lines just before the actors say them? Or annoying your brother who refuses to play Star Wars Trivial Pursuit now because you can remember obscure things from the films like the number of rank insignia on an imperial admirals uniform, or the number of legs on a probe droid. I love that I can do these things, and I love that I always want to learn more, but it is also very much a curse. I spend my day with my mind racing constantly. It will jump from one thing to the next to the next…well, actually, it does this with about 20 to 30 things at once, and it is constant. It is rare that I get mentally drained as my brain just doesn’t stop. This means I have issues with sleeping, which means I am always tired physically, and that then leads to burnouts, which are never fun. I have to have set routines to get anything done because if I don’t, my mind runs away from me, and then I have no focus at all. This leads to issues over a lot of things, and my wife is dealing with a steep learning curve to adapt to how I really am (and she is doing an amazing job of it, and is very much my access to the world)

All said and done though, this first month has really been a roller coaster, and this is only the beginning of this new chapter in my life. There will probably be more posts like this in the future, so if you made it to the end, unlucky, you know more is coming! That said, time to end this post and do something else.

Live long and prosper \\//

The Obligatory first post

So lets get this one out of the way. I did think about rambling about my life to date, but that just gets boring and definitely a tl;dr moment. Since I know some people out there will want to know, here is the summary. I was born, always an awkward child, no friends, way ahead of the curve at primary school, bullied, no challenge at secondary school, didn’t work, bullied, went from job to job, couldn’t walk, in wheelchair, went to university, learnt to walk again, left university, went from job to job, met wife, moved in together, got married, life crap, got diagnosed with ASC. (That was still pretty long, but hey, you get the idea!)

Well, now that is out of the way, lets get on with the fun stuff. So I am writing again, which is always fun as I tend to just let my fingers fly over the keys as things are going through my head. You are going to find spelling mistakes, bad grammar, and stuff that really doesn’t make a lot of sense in my posts, but that’s what makes it fun to read! What have I been up to today I hear you ask (probably not actually, but screw it, my blog, my rules!) Well, I got up, checked my emails, had my toast and caffeine dose for the day. I then played around on the computer, I am finding I really enjoy playing card games like Magic, Yu-Gi-Oh and several others it seems. It’s a lot easier to play them on the computer, saves having to go to the shops to buy cards, and then find people to play against, which is complicated by the fact I have little to no social skill and end up getting worked up about being in the same room as other people. I can still interact with people and talk, but at least online I can proof read what I type to avoid too many social faux pars. Still, back to what I did today, Oh yeah, that’s right, I decided to start this blog up. It was kind of late in the day by the time I decided to get this up and running though. I managed to set up the site though, set up Twitter and a Facebook page, do some graphics for everything, set up a new email, get information on the site for the about and contact page, link all the social media to the site, write this post, and plan out the next few days posts as well. Phew, that was a long sentence, but all that kept me busy for an hour so yeah.

I have some things planned out to post on here over the coming days, weeks, months, maybe even years. I have a lot of restoration projects I want to talk about, including one I am really looking forward to, restoring a 1949 Pilot Blue Peter Radio. I also want to talk about how I have been following getting my diagnosis as it is something that is difficult to verbalize to people, and writing it down makes it a lot easier for me to explain since I type without thinking about it too much. I am also thinking that I might post my Amazon wish list on the site as well, not because I want free stuff (although I will never say no!) but more so that people can see what I like doing, and I can just say look at my site to friends and family when they don’t know what to get me for Christmas/Birthday/Randomly. Still, that said, I really should think about trying to wind down for the day since it has just gone 10.30pm and I really need to get back into my routine (bloody pandemic screwing up my beautifully laid out routine and plans!) so time to load up YouTube and watch some restoration videos to unwind me thinks.

Until tomorrow, peace out peeps!