A few weeks ago my Dad came up with an interesting way of describing how my brain works. He said it’s a bit like my brain has to be programmed to do certain things and it has to be practiced again and again for it to sink in, but once it does sink in I can do it. However, if part of the situation changes my brain has to be reprogrammed again. I also seem to say certain things in the same way every time, it’s as though my brain is reducing the amount it has to think about at once by having certain areas which have certain ways of thinking.
Seeing as this week (9th-15th October) is dyspraxia awareness week (apologies for this blog post being so late – I’ve been so busy with uni work!), I thought I would expand on what my Dad was saying to try to come up with a computer analogy of dyspraxia to explain some of the areas dyspraxia can affect. Hopefully, if there’s anyone reading this who wasn’t previously aware of what dyspraxia was, it’ll help you to understand dyspraxia a bit better. I’m also aware that other people have come up with explanations of aspects of dyspraxia before in relation to a computer, such as:
So if anyone has any other explanations that they would like to add then feel free to write them in the comments – the more ways we can think of explaining dyspraxia the better, as the more likely it is that people will understand it!
So most people’s brain is like a relatively new, fast computer – it does things quickly and uses the latest operating system. It also works well over wifi. My brain however, uses an entirely different operating system, let’s call it “DYSP”. There are many different versions of this operating system. For some reason, despite the fact that this operating system is fairly common, not many people seem to know about it. Many people get it muddled with the operating system: ‘DYSL’.
DYSP is an operating system that works in a very unique way in comparison to other operating systems. However, it tends to share quite a few similarities with the previously mentioned ‘DYSL’ and also “AUTI”. These operating systems are all a sub-type of operating systems that come under the name ‘ND’. It is important to note, however, that the computers themselves look like any other computer from the outside. That’s aside from the fact that computers that run DYSP are unable to work over wifi, they have to use an internet cable. We cannot simply perform tasks without that wired connection between our brain and body, unlike other people. For example, I cannot simply cook a meal like other people can. I need to be given the exact instructions step-by-step. Other people seem to have these algorithms already built into their computer system, whereas computers that run DYSP need this algorithm to be programmed in step by step, multiple times. It is very easy to make errors when programming in this algorithm, but once the algorithm has been programmed in it works, most of the time…
Sometimes one line of the algorithm will be deleted and the information will need inputting again, especially if the algorithm is a fairly long sequence of steps. Dyspraxics often have difficulty remembering a lot of instructions at once, so for example whilst cooking we may completely miss out a certain stage. To compensate for this we often have to have instructions written down.
There are also simply times when random errors occur in the algorithm. Continuing on from the cooking example, there are times when things will be dropped and spilt – things that are definitely not in the programming code!
If a line of the code is randomly changed without warning, this can often cause the operating system to crash and go into chaos – i.e. a complete panic when our routine suddenly changes! The DYSP operating system is simply unable to cope with this sudden change effectively, whilst other operating systems can. The taxi not turning up to take me to the train station for uni was an example of this. This happened a few times and made me completely panic! Rather than thinking “I need to phone the company to let them know”, I would end up messaging my Dad, stressing out that I was going to be late for uni and my Dad would end up taking me to the station (I would phone the company whilst in the car after stressing out even more over what I was going to say…) Other people may also find this situation stressful, but for me to more of an extent.
The wired connections I previously mentioned can often get tangled and muddled, meaning errors can occur when transmitting the messages. This results in difficulties with co-ordination – our brain is telling our body to do something but that message does not reach our body successfully!
DYSP can be a bit slower than other operating systems, although it does achieve the same end result for many things. For example school/uni work can take so much longer for us dyspraxics due to difficulties such as slower thought processing, but we often achieve the same results as others in the end.
Whilst there are some things that other operating systems perform efficiently, DYSP is unable to perform some of these tasks and often needs extra pieces of hardware to assist with this. Going back to the example of cooking, there are some tasks I am simply unable to do as I don’t have the motor skills or co-ordination to be able to do them – peeling and chopping vegetables is an example. The extra ‘hardware’ that can be used to assist with things involves items such as non-slip mats, or in terms of handwriting particular pen grips.
Computers will always find shortcuts to do things, and DYSP is no exception to this. Rather than using up extra processing time to do things in different ways each time, DYSP will always do things in the same way each time. For me, this even includes some conversations. One example my Dad pointed out was that when I ask if he would like a cup of tea, I always ask it in the same way each time – it’ll always be: “Would you like any tea or coffee?” whereas other people tend to vary things like this.
DYSP uses entirely different software to other operating systems, always doing things in a unique way, but it does have it’s strengths! These include efficient long-term data storage, a determination to carry on even when it keeps on crashing and simply the ability to do and perceive things differently! Remember, the hardware looks the same as everyone else’s so you never know who might be dyspraxic!
Memory, in particular short-term memory, is something that dyspraxia can affect. This is a particular area where dyspraxia and dyslexia are closely linked, along with organisation (which is also closely linked to memory).
Seeing as I’ve learnt a little bit about the processes of memory at university (I’m studying psychology), I thought I would use a little bit of what I’ve learnt (with the help of my textbooks) for this blog. It’ll probably be a useful refresher for me for my next year of university too!
So short term memory, as the name suggests, refers to being able to retain information over a short period of time – roughly 15 seconds. This video provides a really useful overview of what short term memory is and how it can affect dyslexics (the same applies to dyspraxics too):
I also recommend you have a read of this blog post too: https://stormclear.wordpress.com/2015/06/12/the-white-board-and-the-etch-a-sketch/. It gives a great anaology of how dyspraxia can affect short term memory.
Being given directions is a typical example of something that can be difficult when you struggle with short-term memory. I haven’t actually been in a situation on my own where I’ve had to ask for directions (yet!) but whenever I’ve been with someone else and we’ve asked someone I’ve never remembered them! I’m okay with the first couple, but then after that they all just seem to jump out of order and disappear…
At university one of the things we learnt about is the serial position effect, which states that it’s the items at the beginning of the list and at the end of the list that are most likely to be recalled – the items in the middle of the list are most likely to be forgotten. This is because the items at the beginning of the list have been rehearsed over and over, so they have had the time to be transferred into long term memory. Whereas the items at the end of the list are so recent that they are still in short term memory (although I’m not sure they’d still be in mine!) Although we didn’t learn specifically about dyspraxia and memory, I do wonder whether this effect is still found in people with dyspraxia due to our difficulties with short term memory. I think maybe we would be more likely to remember items at the beginning of the list due to the fact that they are in our long term memory which we can rely on a bit better than our short term memory (I’ll go into a bit more detail about that later on in this post)!
The same happened at school too with completely forgetting a list of instructions. In science lessons at GCSE we would do practicals and they would sometimes decide it was a good idea to give us the instructions verbally. I didn’t have a clue what I was doing and always had to ask the person I was working with – I’m so glad we worked in pairs and not on our own! Even though they often gave a demonstration so there was the visual information too, it was just attempting to remember it that was hard!
More every-day things that it can affect are asking people whether they would like a tea or coffee. In my house it’s only me and my dad that drink tea/coffee, as my brother doesn’t, but I think I’d find it difficult in a situation where there were more people to remember for! I do sometimes find myself having to ask my Dad, “Was it tea or coffee you wanted?” What does help, though, although it sounds quite random is the fact that my Dad uses different mugs for tea and coffee. This means I only need to remember what it is he wanted from the time I ask him until the time I get his mug out the cupboard – there, your method has it’s usefulness Dad! I have actually seen mugs that you can get that you can write on – that might be useful for someone who has lots of people who drink tea/coffee in their household!
I quite often even forget whether I have just done something or not. I’ll go upstairs and come back down and wonder if I did actually just turn the hot water on or not, or I’ll brush my teeth and a few seconds later wonder if I’ve actually brushed them or not. And then there’s the typical walking into a room and forgetting what you’ve walked in there for, or being midway through a conversation and forgetting what you were talking about. I know those last two things happen to everyone anyway, but they happen much more often when you’re dyspraxic!
As I briefly mentioned earlier, memory is closely linked to organisation. So although organisation is something itself that dyspraxics/dyslexics can struggle with, short term memory difficulties can impact on this even further. For example, I need to set reminders on my phone to remember to do things – but I’ll often say I’ll set a reminder, and then if I don’t do it instantly that second I’ll often forget to set it! I also have a tendency to, when the reminder does come up (if I’ve actually remembered to set it), turn off the reminder while I quickly do something else. Even if it’s just a few seconds that have been taken up I will usually completely forget about the reminder! For this reason I usually just use checklists on my phone – as they’re the first thing that come up when I unlock my phone and I’ve got into the routine of making sure I keep checking them.
Ironically, I literally have just thought of something else to write, but decided to finish the sentence I was writing first without writing the idea down and I have now forgotten it! Anyway, hopefully I’ll remember it at some point or I’ll come up with the same ‘idea’ again…
I also find that due to my difficulties with short-term memory I often end up missing out stages of tasks, either because I can’t remember what I’ve just done in the previous stage or just because it takes that little bit longer to register in my memory that I haven’t done a particular thing. For example there’s been times before where I’ve walked out of the bathroom or got into bed and suddenly realised that I haven’t brushed my teeth! I’ve even managed to make a sandwich and have forgotten to put the butter in! Or I’ve forgotten to actually put the tea bag in the tea or the coffee in the coffee – that usually happens when I do it in a different order to normal (change in routine has a big impact on memory for me!)
It seems as though one of the main things for me that affects my memory is distraction – I do get quite easily distracted too being dyspraxic! I learnt about an interesting study where participants who had slept after learning something (most likely a list of words) remembered more than participants who stayed awake. This was explained as being due to the fact that the participants who stayed awake had their memories displaced by other items so they have more difficulty remembering what they had previously learnt.
Despite the difficulties I have with short term memory, I bizarrely did well when tested on it! I took part in a study at university which studied participants with dyslexia or dyspraxia. There were all sorts of tests involved – a few of them were on memory. One of them was auditory memory, where a list of numbers would be read out loud and I would have to repeat them back in order. At another stage I had to repeat them backwards. The list of numbers was getting longer and longer and the person said to me that the reason it was going on for so long was because I was really good at it! I was surprised at that seeing as I struggle with my short term memory in other situations. I think, though, it was because I was in a test environment and all I had to think about was remembering those numbers. There was nothing else to distract me, all my attention was focused on remembering those numbers so I was able to rehearse them in my head over and over again. That test definitely wasn’t representative of my short term memory in other situations…
Long term memory, on the other hand, is often a strength of many dyspraxics! Again, as the name suggests, it refers to being able to maintain information over a long period of time – this could be hours, days, weeks or even longer. There are three types of long term memory: procedural memory, semantic memory and episodic memory.
Procedural memory stores ‘how-to’ information – for example how to play the piano, or ride a bike. It’s the information we retrieve automatically without even thinking about it. Semantic memory stores facts and concepts, our general knowledge of the world. Whilst we don’t retrieve this information automatically, it doesn’t take a lot of effort to retrieve it. Lastly, episodic memory stores events and experiences, our personal experiences. This information isn’t retrieved automatically and it takes a higher amount of effort to retrieve it in comparison to semantic memory.
From my personal experience, and from what I’ve heard from others with dyspraxia, it is our episodic memory that is our strength. It’ll often be the really random information I’ll remember, unimportant parts of conversations from years ago, including details such as exactly where the conversation took place too. One example I remember is when I was in year 7 one of my friends was telling me about an argument she had with another friend – I even remember where we were walking at the time. The funny thing is my friend doesn’t actually remember it herself!
Now obviously there are certain things from ages ago that we still forget, we don’t have some sort of superhuman brain that makes us remember everything. But, being dyspraxic means that our long term memory, our episodic memory in particular, does seem to be better than average.
I would love to know why this actually is, what specific part of our brain makes it better than average. Why does our long term memory make up for our short term memory? And how?
But as this is an area that doesn’t seem to have been researched (as far as I’m aware), the answer to these questions remains unknown. I do wonder though whether it is to do with the fact that episodic memory works on a subconscious level, it’s done automatically. Maybe because we’re often more sensitive to our surroundings (in terms of both sensory & emotional sensitivity) the information gets encoded in our brains in some sort of more detailed way than it does for neurotypical people. Although I mentioned earlier that it takes a higher amount of effort to retrieve episodic memories, maybe for dyspraxics this doesn’t make so much of a difference as our problems may lie less in the retrieval aspect and more in the encoding aspect (this is just me wondering by the way – no scientific evidence here!).
This could explain why our long term memory is strongest in the area of episodic memories. If we take an example of a procedural memory, such as riding a bike, this is a physical task so it takes us dyspraxics a lot more effort to be able to store this in our memories. Our brain may send the incorrect signals to our bodies more often, so it takes us a longer amount of time to get the right movements enough times for this to be encoded in our brains.
The other type of memory, semantic memory, contains facts and concepts – relating a lot to education. In order to remember this information we need to be able to store the information in our short term memory in the first place (models of memory suggest that we initially store information in our short term memory and it is transferred into our long term memory). If the particular challenge we have as dyspraxics is getting the information into our short term memory then this makes it harder to learn that information, hence the reason it takes us a lot longer to learn things as we have to spend a lot more time and effort to get it into our short term memories. However, I do believe that once we have that information stored in our long term memory, retrieving it isn’t so much of a problem (well, not until it comes to organising our ideas and getting it down on paper!) So just beause we may have a ‘good long term memory’ that doesn’t necessarily make exams easy, as we have to work a lot harder to get that information into our memory in the first place!
I would love it if there was research done in these areas into the future, it would be fascinating to find out more about how our dyspraxic brains actually work!
Something I’ve noticed over the years is that my dyspraxia affects me differently. It’s not the dyspraxia itself that changes – dyspraxia isn’t a condition that gets progressively worse or better – it’s the environment and the challenges that come with that environment.
For example, the school environment had a lot of structure to it. There would be a timetable which I could go through to plan exactly what books I would need to take in that day. At that age there wasn’t very much outside of school that I needed to be organised about. This meant that I came across as being quite organised – this was something teachers would even point out in parents’ evenings etc. I would always remember the books I needed to take in that day. I think there were only one or two occasions where I forgot my planner or pencil case! Yet now organisation is something I really struggle with!
There’s so many more things to think about now that don’t have a structure to them, whether it’s making a phone call or replying to an email. I know I should make use of reminders on my phone more, but often I find I forget to set a reminder in the first place!
Whilst I was in primary school I would notice that I was the last one to finish the race on sports day, but I wouldn’t notice how I struggled socially. As you get older you tend to become more self-aware of how your dyspraxia affects you, I think that’s the same for any disability. It can seem as though you’re struggling with more – sometimes I think “I don’t remember finding this difficult when I was younger”, but in fact it’s that when I was younger I didn’t realise I did certain things differently to my peers. I didn’t really understand how dyspraxia affects me in social situations until I was in secondary school.
Perhaps this self-awareness could be part of the reason why many people aren’t diagnosed with dyspraxia until they are much older (although I still think one of the main reasons is due to lack of awareness). Another reason could be education. It’s been mentioned to me that lots of people don’t realise how their dyspraxia affects them until further up in education when it gets more challenging and they realise how it affects their working memory, thought processing etc. This could make sense as to why many people are diagnosed as being dyspraxic whilst studying at university. Personally, although I was diagnosed as dyspraxic at an early age I didn’t really fully understand how it affected me academically until I was doing my GCSE’s.
One example I remember was in school in year nine when I started using a laptop in lessons. Someone asked me why I used a laptop and I explained why and they were confused as I didn’t use one in year seven or eight. It wasn’t that my dyspraxia had suddenly got worse, it was because in the lower years we did less writing. So, yes, I still struggled with my hand-writing before, but as the volume of writing required got bigger it was something I struggled with even more, finding it harder to keep up.
Whilst the academic subjects get harder as the years go on, physical subjects like P.E. stop when you get to the end of year 11 (unless you take it as a further option). This means that you’re not compared to your peers so much in terms of your physical ability, so you’re not reminded of the fact that you find it difficult to catch a ball, for example. For this reason you may not notice the gross motor affects of dyspraxia so much anymore.
Dyspraxia is not something you ever grow out of – dyspraxic children grow up to become dyspraxic adults, but over time there may be certain coping strategies you develop to help with certain things. This might mean you don’t notice certain difficulties as much. An example is shoe laces. I used to struggle with my laces, but now I use laces with a magnetic closure. So although I know that I do find shoe laces difficult, I don’t necessarily experience that difficulty now.
However, as you get older there are different challenges that arise as you start to become more independent – things like making phone calls. Something else that I’ve noticed as I’ve got older is how a lot of things that are involved with being independent seem to come so much more easily to others. I’ll often find myself asking others how to do things that other people seem to know how to do straight away.
In addition to the long-term differences, there are also differences from day to day. Although earlier I said that dyspraxia itself never changes, there are some days that can be ‘typical dyspraxic days’ where everything seems to happen 10x more than normal – constantly tripping over, dropping things, getting words muddled up. This can be made worse by being tired or stressed.
Dyspraxia is never something that can be grown out of, it will always be there, but it comes with different challenges over time.
Oh and for those of you who might find it amusing, seeing as we’re talking about dyspraxia over time, here’s a video my dad made for my 18th birthday last year. Spot the dyspraxic moments!😉
The Dyspraxia Foundation need your help!
With funding being cut they are in urgent need of your donations to help continue the vital work they do. Today they have launched an appeal, “Call to Action” with a message from Jamie Lambert (from Collabro):
Please donate and share to help spread the word!
This last weekend was a very dyspraxic weekend! And no, I didn’t keep tripping over things or getting my words muddled up…that wasn’t quite what I meant! On Saturday I went to the Dyspraxia Foundation’s AGM/Conference in London and on Sunday I took part in the British Vitality 10k, again in London, to raise money for the Dyspraxia Foundation.
I had never really considered doing a 10k before, being dyspraxic means running a long distance isn’t really my sort of thing! However, a few months ago me and my Dad heard about an event in London in September called ‘Parallel London’. It’s a fully inclusive event, you can choose a variety of distances and you can either walk, run or push (for wheelchair users). Me and my Dad thought it sounded great and considering it would be around the Olympic Park too it would be a brilliant experience. So we decided we would walk 10k and do lots of walks over the summer in preparation. A few weeks later I then heard that Rosie was looking at entering the British Vitality 10k if anyone was willing to walk it with her. I looked on the website and saw that you get to go past some great sights in London and it would be a perfect opportunity to raise funds and awareness for the Dyspraxia Foundation, so I said I would do it with Rosie. I will also still be taking part in the Parallel London event, which I’m really looking forward to!
I then wasn’t sure what to do about the day before, when the Dyspraxia Foundation had their AGM/Conference. As it was being held in London, I really wanted to go to it (especially as I had never been able to make it to any of their events before) but I had the dilemma of making myself too tired for the 10k walk the next day. This year I became a member of the Dyspraxia Foundation’s Youth Focus Group, where young people with dyspraxia discuss ideas and plans for people aged 13-25 with dyspraxia. There would be a room booked at the event on Saturday for the Youth Focus Group along with other young dyspraxics who wanted to come along and discuss ideas. So I decided that I would stay for the morning on the Saturday so that I would be back during the afternoon, meaning that hopefully I wouldn’t be too tired for the next day.
My plan was to get the train tickets on the Friday before I went, so that it would be less to think about on Saturday morning. But guess what? Me being a typical dyspraxic meant I completely forgot! This was also my first time travelling to London on my own which when I first thought about seemed quite daunting. Me navigating the tube on my own…would I get lost? Would I have a clue what I was doing?! Me and my Dad went over the route on Google Maps beforehand and I knew what train line I needed to get etc. and luckily the route seemed quite straightforward with no changes. I definitely felt a bit more confident about it after having gone over the information I needed to know.
The weekend came around quite quickly actually! Saturday morning was an early start, although not ridiculously early, at 7:00. When I got to the train station I had to message my Dad to double check I was buying the right ticket. I thought it was but as the name of it was slightly different to what I thought, I wasn’t 100% sure.
It felt strange travelling into London on my own, but it actually turned out to be a lot easier than I had thought. The various times I had been into London before with my Dad and brother it had all seemed so complicated. I think because I knew exactly what line I had to get beforehand that made it simpler too. So I managed to get there without getting lost! All I had to do now was walk out the exit to meet Rosie, her Mum, Matt and Alice and we would walk down to the AGM/Conference. Except I couldn’t see them! I walked around, back out to the other side of the tube station but had no idea where they were. Eventually after messaging Matt we realised that they had been quite near the whole time, it was just that I hadn’t realised you had to go up the set of escalators outside! It wasn’t until I got home later and was talking to my Dad that we realised there were two exits out of the tube station, and the one I had come out of was actually the opposite side to the one I needed (which was why after going up the escalators we then had to walk around the corner and down some steps into a different bit!) It was a good job I did meet everyone there, otherwise I would have walked out of that exit, turned right down that road and wondered where on earth I was!
We still got there in good time though, we were there for about 10 minutes before the AGM started. It was typical that I couldn’t stop coughing during the AGM when it was quiet, and afterwards when it was a bit louder I was fine! We then went into a separate area booked for Dyspraxia Foundation Youth, where there were about 10 of us altogether. We were mainly discussing plans for creating an awareness video and arranging a meet up for young people with dyspraxia in October. When the glasses were brought in someone made the comment “I wonder which one of us will break them first!” Haha! I’ve only been to two meetings with the Youth Focus Group so far, one of them I couldn’t make due to travel, but it’s been great being part of it and being able to discuss ideas. It’s quite funny thinking back to when I was around 8 years old and my Dad was telling me about a really good website about dyspraxia he had just found (The Dyspraxia Foundation website), I wouldn’t have thought that 11 years later I’d be helping to think of ideas for it (well, the youth section of it)! If you haven’t already, take a look at the youth website and if you’re someone aged 13-25 with dyspraxia feel free to join the Facebook group. Also what’s great is being with people who “get it”. Although I was only there for the morning, so unfortunately didn’t get to chat people that much, it was lovely being surrounded by other dyspraxics and knowing you’re not the only one. I will definitely have to come to one of the Dyspraxia Foundation conferences for a full day at some point!
The timing worked out quite well actually, as the youth part of the day only went on for the morning so after lunch I made my way back home. I managed to navigate my way home successfully, I didn’t go out of the wrong exit this time or miss any escalators either! The only annoying thing was that when I got to King’s Cross station I must have just missed the train home because the next train wasn’t until another 45 minutes! I was then meant to buy my train tickets for the next day on the way out of the station before I walked home but I forgot, again! So after getting home and having a cup of tea, I went back out again to the train station again to get the tickets.
I was surprised how tired I was that evening. I didn’t expect to be so tired considering I only stayed for the morning, but I probably would have been even more tired if I had stayed for the whole day. Although according to my fitbit I had done a total of 14,328 steps that day – so that could have something to do with me being tired!
Seeing as I was so tired I got to bed quite early at 9:45 and read for about 15 minutes, imagining I would get to sleep quite quickly. For some reason, though, I still took over half an hour to get to sleep!
The next morning was an even earlier start at 6:15, as we had to catch the 7:56 train. The weather wasn’t looking too good while me and my Dad were walking to the train station, as it felt really humid. I met Rosie and Matt at St James’ Park and we walked over to the timing pens. It was amazing how many people were there taking part. I knew there would be a lot but I didn’t expect it to be that many! There were so many different charities too. Apparently as someone walked past me they pointed my t-shirt which said “Dyspraxia Foundation” on the back and said “Awesome!” We then saw someone else who was running for the Dyspraxia Foundation, so we chatted to her for a bit before going into the timing pens. My Dad brought his 360 degree camera with him. Holding it up high in the air with a selfie stick resulted in lots of people looking up and waving at it – brilliant! I wish I could upload the 360 photos/videos on here but unfortunately I can’t as WordPress doesn’t support that format yet.
We then heard the blue runners start (we had either blue or red numbers depending on speed) and after a while we started to make our way over to the start line. The crowd seemed to all merge into one at that point, so there didn’t seem to be much point in the timing pens! We were towards the back of the crowd which was good. Although I’ve never put it down to dyspraxia (not sure whether it actually could be due to the sensory aspects?) I feel really faint and dizzy when I’m in a hot and crowded place, and have to find somewhere to sit down (even if it is on the floor!) Luckily it wasn’t humid at all. It did rain during the 10k but that was actually quite nice and refreshing! As we were walking towards the start line someone came up to me and Rosie and asked what dyspraxia was, so at least we helped to make one more person aware!
We then heard one of the commentators reading out the names of the charities on people’s t-shirts, so me and Rosie decided we would wave and get their attention to get them to read out The Dyspraxia Foundation, and they did!
Eventually we got to the start line – I had done about 7,000 steps before I even got there! It wasn’t advertised as being a fully inclusive event unfortunately, but we did see someone in front of us walking with a prosthetic blade who unfortunately fell over at the start, but she got up and completed the race. Someone else in front of us was walking the 10k for the National Autistic Society, and you could tell it was very overwhelming sensory-wise for them as they were putting their fingers in their ears. I thought it was amazing that they did it though considering how much sensory information there was.
Most of the crowd were very supportive, but we did have someone (who I think was working there) say to us “Stop talking and start running!” I know he said it in a half-jokey way, but I bet he wouldn’t have said it if we had a disability that wasn’t hidden! We were talking a lot to keep each other going! It worked because when we got to the 2k mark we were both surprised as we hadn’t even realised we had passed the 1k mark yet!
The crowds weren’t too busy (they were probably a lot busier towards the start of the race) but there were always people clapping and cheering us along. It was nice (but strange) to be walking in the middle of the roads in London too and it was brilliant getting to see the sights as we went along.
At one point we were offered a lift (in a car there for the event) the rest of the way! Maybe they thought we were running and struggled so were walking or something! But we carried on walking till the end!
There were times when people cut in front of us, at one point someone cut across directly in front of us with suitcases. Not ideal for dyspraxics who struggle with spatial awareness!
Some of the team from the Dyspraxia Foundation came to support all of those who were taking part to fundraise for them (there were 11 of us altogether). As Rosie said to me, it was nice knowing they were there towards the end of the route motivating us to finish! Before we came up to Big Ben (where the supporters were) Rosie’s mum came up to us and suggested sprinting past the Dyspraxia Foundation. We didn’t quite sprint but we did do a bit of a jog!
My Dad took photos of me and Rosie throughout the route, he walked parts of the route and waited for us at certain points. It was quite funny because I wasn’t keeping track of where he was, he just kept appearing at random points! It’s great to have so many photos from the event – thanks Dad! But then again, when would my Dad ever go to an event and not take photos?😉
After going past the Dyspraxia Foundation supporters we didn’t have long to go. We were slightly confused when we came up to the 9k mark though about five minutes later, as we thought the supporters were at the 9k point!
We couldn’t quite see the finish until we were right near it. The last part seemed to go on for ages, we didn’t know when we were going to get there! The comment from the commentator made us laugh though, she said something like “Look at these girls having a proper gossip on the way round, they probably stopped off for a cup of tea” – the best part is it’s even on video!
Once we’d crossed the finish line we were given a medal, a goodie bag and a t-shirt – and a much needed lucozade! We then walked over to the pub, where the Dyspraxia Foundation had a room booked upstairs. After walking 10k the 10 minute walk to the pub felt like the longest walk ever!
We got to the pub, had some sandwiches and had a photo taken of all of those who took part for the Dyspraxia Foundation, after which the certificates were handed out. Whilst I was there I had a look online to see what my time was for the 10k, and it said “DNF”! I was quite worried about that, as I knew for a fact that I did finish! It must have just been like that before the time was processed though, as it soon updated and I finished in a time of 1 hour 56 minutes (and one second)!
This time, unlike the day before, was perfect timing with getting the train home as we got to King’s Cross 5 minutes before the train departed! I didn’t have any tickets to remember to buy this time either. I sorted my stuff out as soon as I got home as I knew that as soon as I sat down I wouldn’t want to do anything!
After that I sat down, had a much-needed cup of tea and looked through photos! My legs were hurting/aching so much (I did a total of 27,124 steps yesterday) but it was a great day which I really enjoyed!
Me and Rosie even had a tweet from Mollie King from The Saturdays to congratulate us!
Thank you to: Rosie (we kept each other going with our chats throughout the 10k!); the Dyspraxia Foundation and everyone else who came down and supported us; and my Dad who walked 75% of the route himself to get photos of us! And of course, a huge thank you to everyone who generously donated! Although if you would like to, there is still time to make a donation.
Alice and Janet, who also had “a very dyspraxic weekend”, have also written some really interesting blogs about their weekend, which can be found at the following links: https://alittlemoreunderstanding.wordpress.com/2016/07/11/general-life-reflections/ and http://dyspraxicadult.blogspot.co.uk/2016/07/dyspraxia-foundation-adult-advisor-im.html. Since writing this blog, Rosie has also blogged about the weekend, which can be found at the following link: http://thinkoutsideofthecardboardbox.blogspot.co.uk/2016/07/looking-deeper-to-understand-dyspraxia.html.
Here’s my personalised video from Sunday (featuring the amusing comment at the end!):
A question that I’ve seen a lot recently on social media, such as facebook groups for dyspraxia, is: “Is dyspraxia on the autism spectrum?” This seems to cause a lot of confusion, while some people say “No, it isn’t” others say “Yes, it is”. So I thought I would blog about it for those of you who may have been asking this question.
So, what is the answer to this question? No, dyspraxia technically isn’t on the autism spectrum. I know I’ve talked about how much overlap there is in my previous blogs, but the reason it isn’t actually ‘on’ the autism spectrum is due to the diagnostic criteria.
An autism spectrum disorder is diagnosed primarily on the basis that you have difficulties with social communication & interaction and you engage in restricted or repetitive patterns of behaviour, interests and activities (I know this sounds very medical, but this is going off the diagnostic criteria!). Whilst I mentioned in my previous blog on autism that lots of autistic people also have difficulties with spatial awareness and motor skills etc., these are not the primary criteria used for diagnosing autism.
Dyspraxia, on the other hand, is diagnosed primarily on the basis that you have difficulties with motor skills. Again, as I have mentioned before, many dyspraxics also experience difficulties in social situations, change of routine etc., but these are not the primary criteria used for diagnosing dyspraxia.
Whilst there is so much more to autism, and also dyspraxia, than the primary diagnostic criteria it can help to understand why dyspraxia isn’t officially on the autism spectrum. I use the word “officially” because I don’t think it’s right to deny the fact that there is definitely a link between autism and dyspraxia, given how much overlap there is. I’ve gone into more detail about this in a previous blog post (https://theblogwithonepost.wordpress.com/2015/08/19/dyspraxia-autism-the-overlap/) but a few examples are that dyspraxics can struggle in social situations, find changes in routine difficult, have difficulty with eye contact and be very literal thinkers, which are all things that are most commonly associated with autism.
I’ve been told before that dyspraxia is classed as a Specific Learning Difficulty, whereas autism comes under Autism Spectrum Disorder. Whilst that’s true and dyspraxia and autism are two different diagnoses, I don’t personally view them as being completely separate from each other – I tend to view dyspraxia as being close to the autism spectrum.
I’ve also seen online that some people believe that what may further add to the confusion is that dyspraxia itself is a disability on a ‘spectrum’ – literally just meaning that it’s severity ranges. Some people may get this confused as meaning the autism spectrum, especially as when talking about autism people sometimes shorten the sentence to say that someone is “on the spectrum” (meaning that they are autistic).
In addition to the overlap, some people are also diagnosed with both dyspraxia and autism! According to the National Autistic Society’s website, people with autism quite often have difficulties with motor co-ordination and they may be formally diagnosed with dyspraxia (in addition to their autism) if this significantly affects them. On the other hand, people who have an initial diagnosis of dyspraxia may also be additionally diagnosed with autism. Although I don’t know a lot about this, I imagine that most people with dyspraxia who do have overlaps with autism don’t experience these “symptoms” to the same extent that people with autism do (myself included), whereas when they do experience these overlaps to a more significant extent (so that they meet the autism diagnostic criteria) they are given an additional diagnosis of autism.
I seem to remember seeing that there has been quite a bit of research into the percentage of autistic people who also have symptoms of dyspraxia, yet there hasn’t been any research (as far as I know) into the percentage of dyspraxic people with symptoms of autism. It would be interesting if there was research carried out which looked into this, as well as the percentage of dyspraxic people who have an additional diagnosis of autism.
It is not just autism and dyspraxia that overlap though, there is a lot of overlap between many different types of neurodiversity. For example, dyspraxia also shares quite a bit in common with dyslexia (such as difficulty with short-term memory) and ADHD (such as difficulty with concentration). Many people have a range of different diagnoses and some people believe that there should be a single spectrum for neurodiversity in general and that we should take a more individual approach, rather than separate diagnoses. The following link provides quite an interesting view on this, particularly towards the end: http://suehyland.co.uk/ond/neuro-developmental-delay-ndd/?doing_wp_cron=1442032150.5499830245971679687500. I’ve heard that it is actually more common for someone to have dyspraxia along with co-morbid diagnoses than just a single diagnosis of dyspraxia!
However, with dyspraxia being a very individual thing it is important not to make assumptions. There may be dyspraxics reading this who don’t experience any similarities to autism at all. It’s a case of getting to know the person as an individual and finding out how their dyspraxia affects them. So for that reason, yes it is important that dyspraxia isn’t just seen as “something that’s sort of similar to autism”. It does need to be recognised as just “dyspraxia”, but at the same time it needs to be remembered that quite often there is a link. …the world of neurodiversity can be a very complicated place at times!
I thought that whilst on the topic of dyspraxia and autism I would share some tweets I saw recently. The National Autistic Society recently held an event which they live-tweeted from and one of the topics they were talking about was autism in girls. Some of their tweets I found, interestingly, I could relate to a lot as someone with dyspraxia, for me it was the first three in particular. Many dyspraxics will probably be able to relate to the anxiety related ones too, as that’s another link, between dyspraxia and anxiety.
Other dyspraxic bloggers who have written great blog posts on the similarities between dyspraxia and autism include Rosie and Anna, whose blogs can be found at the following links: http://thinkoutsideofthecardboardbox.blogspot.co.uk/2015/08/the-social-side-of-dyspraxia.html and https://freeingthedragon.wordpress.com/2016/04/07/autism-from-the-dyspraxic-side/.
Although dyspraxia is a hidden difference, there are certain aspects of it that can be seen. For example, you may notice that a dyspraxic holds their cutlery differently, or grips their pen in a different way. Tiredness, however, you can’t see. It’s a hidden aspect of a hidden difference.
Being dyspraxic means our brains are wired in a different way and it takes us 10x the amount of effort to do things than it does for other people. We have to think more about the way we carry out certain tasks, including the things which come naturally to others. It takes us so much longer than others to do things too. Whether it’s processing a conversation, trying to navigate our way through a crowd without bumping into anyone, or trying to concentrate on a lecture or lesson, our brain always has to work so much harder. This means that we may get tired much more easily than other people would, without necessarily having had what people would consider to be a ‘busy day’ (it’s busy for our brains though!) A lot of dyspraxics also have hypermobility. I don’t know a lot about it, but I can imagine that this would further contribute to tiredness due to the effect that it has on your joints.
When I was younger I used to get tired very quickly when walking. I used a buggy up until the age of six/seven if we were going somewhere where there was a lot of walking involved. During my first year of secondary school I started taking part in disability athletics. Although no amount of sport can magically make dyspraxia disappear, doing athletics did help in terms of getting used to doing more exercise. So added to the fact that you get used to doing more walking as you get older anyway, this meant that I didn’t get as tired as I used to when walking.
Something I’ve always struggled with due to tiredness is carrying things. At school I’d have quite a lot to carry: my laptop in my rucksack, my books, my P.E. kit. Sixth form was the worst for that though, with all of those folders full of paper. For this reason my dad would give me a lift to and from school. My school also put arrangements in place too. I didn’t have a locker so I had permission to leave my P.E. kit in the Pastoral Office during the day when I didn’t need it. In sixth form luckily I had a locker though – I needed it with all those folders! The teachers provided me with an extra copy of the textbooks so I could leave one set in my locker and one set at home to save carrying them around so much. At uni I have a taxi provided through DSA between home and the train station and the train station and uni. It’s not so much due to the tiredness itself, it’s more to do with the impact of it. Tiredness makes it extremely difficult for me to concentrate, which would mean if I was to walk I’d be making concentrating in lectures even more difficult than it already is (due to my dyspraxia affecting concentration).
If I had nothing to take with me to uni though, I’d probably be fine. I seem to find that when I’m carrying things it makes me so much more tired than I would be if I was walking the same distance without having anything to carry. It’s weird because I wouldn’t have thought it would make that much of a difference, but that’s dyspraxia for you! Or is that more a CP thing? I can never tell…
Something I’ve noticed more as I’ve got older is not only the physical side of tiredness but also mental tiredness, particularly during sixth form. The increased workload meant that I was getting extremely tired and this impacted on my concentration too. I remember at one point hearing someone at school say “I’m so tired!” and then they turned around and carried on typing their essay. Yes, they probably were tired. I’m sure I wasn’t the only one who got tired from sixth form, even if to a bigger extent than others. But I was sat there thinking: “How on earth are they able to concentrate when they’re tired? I wish I could do that!” It’s not something I would just say to procrastinate either, I genuinely cannot concentrate at all when I’m tired. I remember coming home from school attempting to complete the pile of homework or revision and there were often days where I just had to leave it as I couldn’t concentrate. The frustrating thing was that I couldn’t just reduce the amount of revision I did, because due to my dyspraxia it would take me so much longer to do it. But then due to that increased amount of time spent doing it, I’d become tired – you can’t win! I then started to get really early nights because I was just shattered. For a couple of months I was going to bed between 8:30 and 9:00!
I also had a similar thing again more recently during uni. Suddenly over the Easter holidays I was getting extremely tired. The most frustrating thing was that I had assignments and so much revision to do too. I had planned on getting so much revision done during the Easter Holidays, and during the first week I got barely anything done at all. I tried all sorts of things: taking more breaks, listening to music, but nothing seemed to work. I then realised that maybe I’d have to start getting to bed early again. So I was getting to bed around 9:00 and then reading for a bit, which meant that I got 10 hours sleep. That seemed to work, as if I got any less sleep than that I wouldn’t be able to concentrate the next day. It was really annoying to have to keep getting to bed early, but it was the only way I was going to be able to get revision done. By this point I was very far behind on my revision timetable! Luckily when I was back at uni after Easter I was able to concentrate okay without getting to bed ridiculously early…well, most of the time! So I eventually managed to catch up with my revision timetable…somehow!
I think one of the things that can be frustrating about getting tired easily is that unlike other aspects of dyspraxia you can’t just do it differently. For example, if you spill drinks easily you can just use a lid and a straw. Although saying that, you can to some extent plan things around it. For example, for two out of three days I was in uni I would finish at 2:00. I knew that this meant technically I should go home and get on with revision. But I knew that by the time I’d got home I’d be tired and revision wasn’t going to happen. So I decided to stay at uni in the library for a couple of hours and do revision. I preferred it that way too because it meant that when I got home I could just relax.
Another example is a weekend in July. There’s the Dyspraxia Foundation AGM and conference on the Saturday and I’m taking part in a 10k walk on the Sunday. Yes, I’m blogging about how I get tired easily and then telling you I’m walking 10k… It will certainly be a challenge! But I’m looking forward to the opportunity to raise funds and awareness for the Dyspraxia Foundation (if you would like to donate, here is the link to my Just Giving page: https://www.justgiving.com/fundraising/Natalie-Williams24) Anyway, back to what I was explaining. So I’d already signed up to do the 10k on the Sunday but I really wanted to go to the conference on the Saturday, but at the same time I didn’t want to get too tired from the Saturday before I’d even done the 10k on the Sunday! I haven’t completely made my mind up yet but what I think I’m going to do is go on the Saturday for the morning so I’ll be back by early afternoon. That way I shouldn’t be as tired as I would be if I was to get back later on.
From speaking to others with dyspraxia, one effect that tiredness can have is making our dyspraxia seem ‘worse’. We can be more clumsy than usual (yes, that’s possible!), forget things more etc.
Another difficulty we can have being dyspraxic is getting to sleep. There was one time (I think this was also during the Easter holidays at one point) where I was really tired but then took ages to get to sleep. Not the best combination! I have absolutely no idea why it’s made such a big difference, but the only thing that worked is switching to decaf tea. Now the majority of nights I get to sleep quite quickly. I do always read in bed first though as I find that helps me sleep too.
Although I don’t personally take naps, I was told that lots of dyspraxic and dyslexic people find that naps are helpful. So if any of you are struggling with tiredness, that’s something you might find helpful.
Tiredness is experienced by lots of us with dyspraxia but I don’t think it’s the first thing people would think of to associate with dyspraxia. Interestingly, though, last year I saw something about a study that was being carried out to compare fatigue in people with dyspraxia and people with chronic fatigue syndrome. It would be interesting to find out what the results of that study were.
It’s always nice to get more than one perspective on a particular topic so here’s a couple of other posts on dyspraxia and tiredness: https://thinkoutsideofthecardboardbox.blogspot.co.uk/2015/05/fatigue-overthinking-and-sleep.html and http://starsbythedoor.tumblr.com/post/60453187123/dyspraxic-problem-122-the-great-tiredness.
In just 40 days (10th July) I will be walking the Vitality British 10k in London to help raise funds and awareness for the Dyspraxia Foundation. My Just Giving page can be found here: https://www.justgiving.com/fundraising/Natalie-Williams24.
As those of you who read my blog will know, I have dyspraxia and mild cerebral palsy. Whilst cerebral palsy is something that the majority of people have heard of before, dyspraxia isn’t – despite the fact that dyspraxia is more than twice as common! Dyspraxia is estimated to affect between 1 in 10 to 1 in 20 people.
I was diagnosed with dyspraxia at the age of three and in those 15 years I have come across a lot of misunderstandings about dyspraxia! 9 times out of 10 when I tell someone I have dyspraxia they look at me with a blank look on their face. It wouldn’t be so bad if it was something relatively simple to explain, but attempting to explain dyspraxia to someone who has never heard of it before isn’t easy!
That’s because it affects such a variety of aspects of day to day life: having difficulty getting the right grip on the pen when you’re writing; having trouble judging the distance of the cars when crossing the road (I’m the one who’s stood there for ages, having missed 10 opportunities to cross!); trying to drink without spilling it down yourself (I’ve resorted to using a straw, much easier – although I still find a way to spill it!); forgetting things (I was literally just about to write something else, but forgot – it’s safe to say short term memory isn’t a strength of mine!); literal thinking (for people who know me it’s not so bad, but it can make situations awkward sometimes especially with unfamiliar people); trying to keep up with a conversation amongst a group of people (this is made difficult by having difficulty with thought processing, often by the time I’ve thought of something to say they’ve all moved on to the next point!) That’s just a few of the ways dyspraxia affects me. Not everyone is the same though, some dyspraxics will be over-sensitive to certain noises, whereas I’m not. On the other hand, some people won’t have the same difficulties in social situations that I do. As you can see, it affects people in so many different ways. I’ve gone into more detail in my other blog posts if you would like to find out more.
I’m not saying all this to make you feel bad. Being dyspraxic also means there’s plenty to laugh about and one advantage is that our long term memory often makes up for the fact that our short term memory is awful! But having this view on dyspraxia doesn’t just happen on it’s own. It comes from the support of the Dyspraxia Foundation – getting to know others with dyspraxia on their Facebook group for people aged 13-25 with dyspraxia, looking through the factsheets they’ve created for tips to make things that little bit easier and knowing that their helpline is there to answer any dyspraxia related queries. It’s the same for so many others too. The Dyspraxia Foundation are the only charity in the UK who are dedicated to raising awareness of dyspraxia (and coincidentally they’re local to me too!) They do a huge amount in helping to raise awareness of dyspraxia – distributing leaflets and books about dyspraxia to local schools. They hold conferences for parents, teachers or adults with dyspraxia – full of information and the opportunity to get to know others with dyspraxia. They have a vital helpline service, supporting adults and parents of children with dyspraxia. They run local support groups, making sure no one with dyspraxia feels like they’re alone. Despite the fact that there still isn’t enough awareness, it really has come a long way so far with the help of the Dyspraxia Foundation and they’re constantly doing what they can to raise awareness even further through talks and through their social media accounts.
The Dyspraxia Foundation do not receive any government funding, and consist of a large number of volunteers with just a few members of paid staff. They cannot continue their work without vital funds, so that is why I am walking 10k in London to raise money for them. One way in which dyspraxia affects me is getting tired more easily. When I was younger I would use a buggy for longer distances, even up until the age of six/seven. So walking 10k will be a challenge, but I’m looking forward to raising money and much needed awareness for dyspraxia!
Please donate – it really would mean a lot if you could! As little or as much as you like, it all makes a difference!
I will be walking the 10k with Rosie, who is also dyspraxic, and her boyfriend Matt will be running the 10k. It would be great if you could take a look at their Just Giving page too.
You can either donate via my Just Giving page or there is also the option to donate by text if you would prefer. Just text “NWDF90” followed by the amount you wish to donate to “70070”.
Thank you so much for taking the time to read this. Please donate if you can!
“If you’ve met one person with autism, you’ve met one person with autism” is a phrase I’ve heard so many times, yet a phrase that couldn’t be more accurate! There are traits that everyone with autism will have to some extent or another, such as difficulty in social communication. However, there is a reason autistic spectrum disorder is called autistic spectrum disorder….
Everyone with autism is different! Some people with autism will be non-verbal, others will be verbal. Some people with autism will hate being touched, others won’t mind it. Some people with autism will hate certain noises, others will love those noises. The list is endless. Autism really does affect people in a whole range of different ways.
If someone tells you that they, or someone else, is autistic, I personally don’t think there’s anything wrong with saying that you know someone else with autism. As long as you make it clear that you understand that everyone with autism is different. And don’t make assumptions about the person based on what you know about someone else with autism.
You may have heard lots of different terms about autism: ‘Asperger’s’, ‘High-Functioning Autism’, ‘Low-Functioning Autism’. What do they all mean? So autism can range from ‘mild’ to ‘severe’, with mild autism also referred to as ‘high-functioning autism’ and severe autism referred to as ‘low-functioning autism’.
Asperger’s Syndrome is a form of autism that is generally considered to be on the ‘high-functioning’ end of the autism spectrum. People with Asperger’s Syndrome often have fewer problems with language, in terms of speaking, than people with autism (not that people with Asperger’s Syndrome don’t have autism…because Asperger’s Syndrome is a type of autism).
Autism and Asperger’s Syndrome tend to be the most commonly known Autistic Spectrum Disorders, but they are not the only ones. PDD-NOS (Pervasive developmental disorder not otherwise specified) is an ASD (autistic spectrum disorder) where the person has some, but not all of the characteristics of autism.
PDA (pathological demand avoidance) has only recently been considered to be part of the autism spectrum, as they share many of the difficulties of people with autism but people with PDA tend to have a better social understanding and communication than other people with autism. The main difficulty people with PDA have is that they have a high level of anxiety when demands are placed on them. The National Autistic Society website has some useful information about PDA: http://www.autism.org.uk/about/what-is/pda.aspx
You may have noticed that I have used quotation marks when referring to ‘High-Functioning Autism’ and ‘Low-Functioning Autism’. There is a lot of debate surrounding these labels. Firstly, where is the ‘cut-off point’? How can you say that one person on the spectrum is ‘High-Functioning’ and the next person along the spectrum is ‘Low-Functioning’? And what about the people who are ‘High-Functioning’ is some situations but ‘Low-Functioning’ in other situations? A brilliant discussion about this and other labels can be found on Chris Bonello’s website ‘Autistic Not Weird’: http://autisticnotweird.com/labels/. In addition to the debates about who is categorised as ‘Low’ or ‘High’ Functioning, there is also the issue that calling someone ‘Low-Functioning’ isn’t the nicest of things to say is it?
Now, we come onto the discussion of ‘mild’, ‘moderate’ and ‘severe’ autism. Some people disagree with these labels to the same extent as they disagree with the labels ‘high’ and ‘low’ functioning. I personally think that saying someone has ‘mild’ ‘moderate’ or ‘severe’ autism is necessary though – and it’s true, some people do have more severe autism than others do. For example, one person might have autism but their difficulties don’t stop them from living independently, while another person with autism may need lots of extra support and be unable to live independently.
We do need to know more about the person as an individual, as saying whether they have mild or severe autism doesn’t tell us everything we need to know about the person. I don’t believe they’re distinct categories either, as I mentioned before autism affects people in a whole range of different ways and everyone with autism is unique. But nonetheless, it gives us an idea as to how much the person’s autism affects them.
A common stereotype of autism is that people with autism are all savants, which means that they have an exceptional ability in a certain area. In reality, only 10% of people with autism have savant abilities. I think a large reason for this stereotype was due to the film ‘Rainman’ – again, remember that is just one person with autism! Something that lots of people with autism do have though, are ‘obsessions’. But even if someone with autism has an obsession with a particular topic, that doesn’t necessarily mean that they have a savant ability in that area.
Also, many people with autism may have additional learning disabilities, specific learning difficulties, or medical conditions, while other people may just have an autistic spectrum disorder.
One particular example of where someone has assumed that every autistic person is the same with my little brother, Ramsey, is when my mum was looking to get a dog. My mum was told by the animal shelter that someone else who had a child with autism had to return the dog because their child kept hitting the dog, and that it wouldn’t be a good idea for my mum to get a dog because of that. That’s one person with autism! That doesn’t mean just because Ramsey has autism too that he would do the same. And also, any child may hit a dog anyway whether they’ve got autism or not! Such an ignorant comment to make!
So please remember, autism is called a ‘spectrum’ disorder for a reason – don’t just assume that everyone on the spectrum is the same!
This week (2nd-8th April) is World Autism Awareness Week! My little brother, Ramsey, was diagnosed with autism just over a year ago. If you would like to read the blog post I wrote for last year’s autism awareness week, here is the link: https://theblogwithonepost.wordpress.com/2015/03/28/world-autism-awareness-week/
I used to hear people emphasise how much more important autism acceptance is than awareness, and if I’m being honest, this used to confuse me. I would think “But surely if people are aware of autism then they will be understanding?” It’s not until you have a family member with autism, or are autistic yourself, that you really gain an insight into the difference. Whilst I still believe awareness is very important, so is acceptance.
According to a survey carried out by the National Autistic Society, 99.5% of people have heard of autism before. Yet that doesn’t mean that those people understand or are accepting of people with autism.
I can think of so many times when I’ve been out with my mum and Ramsey and people have acted ignorantly towards Ramsey. These are just a few of them… At Ramsey’s playgroup Christmas party, a comment came from a parent about how ‘naughty’ Ramsey was being (he wasn’t sitting with the other children and he was running around and jumping up and down with excitement). It wasn’t Ramsey’s fault that he didn’t understand, he’d done really well that day actually as it was a complete change of routine for him. On holiday last year, whilst we were on the train Ramsey was screaming due to sensory overload and people were staring and sighing as though they thought he was having a tantrum. Do they realise how distressing train stations are for him with being in a different setting, all the sensory information – the tannoys, the trains, the people? And even medical professionals can be ignorant! When mum was at the doctor’s Ramsey’s GP commented on how she thought Ramsey was getting ‘a bit big for his buggy now’ – unbelievable! Firstly, his buggy is a disability buggy designed to go up to an older age, so he’s not too big for it at all. Secondly, he uses it for his own safety. GPs of all people should know that!
And the problem is, the majority of these people will have heard of autism before. They just don’t use that knowledge to think “There might be a reason why they’re doing that, maybe that person has autism.” People then need to simply accept the fact that everyone is different, not everyone behaves in the same way. Autistic people need patience and understanding, not ignorant comments and stares.
A new drama on BBC called ‘The A Word’ (a brilliant series by the way, I definitely recommend watching it) is about a boy with autism, Joe, and his family, and so far it has covered a lot about acceptance. The mother in the programme finds it hard to accept the fact that her son is autistic, whilst something Joe’s sister says sums up acceptance perfectly: “He’s Joe, he’s always been Joe, why wouldn’t we want him to be Joe?”
Autism awareness is being aware of the fact that people with autism may stim, which may involve hand-flapping. Autism acceptance is accepting the fact that there’s nothing wrong with stimming, and not staring or making judgemental comments.
Autism awareness is being aware of the fact that some people with autism may experience sensory overload and dislike new situations. Autism acceptance is accepting this, but not excluding the person and still inviting them to yours/your child’s birthday party, and asking if there’s anything you could do that might make it easier.
Autism awareness is being aware of the fact that someone with autism might make a certain noise when they’re upset or excited. Autism acceptance is accepting the fact that there’s nothing ‘wrong’ or ‘weird’ in doing this, it’s just another way of expressing emotions.
Autism awareness is being aware of the fact that someone with autism may struggle with communication. Autism acceptance is accepting the fact that not everyone communicates in the same way, and trying wherever possible to use the person’s preferred method – whether it’s just a bit more time they need, less literal use of language, or visual aids such as objects or symbols to refer to.
Autism awareness is being aware of the fact that 1 in 100 people are on the autistic spectrum. Autism acceptance is accepting the fact that 1 in 100 people may think in a different way, and may struggle with some of the things you find easy. But most of all acceptance is: embracing these differences, not just assuming someone with autism is being ‘naughty’ or ‘lazy’, treating them with understanding and patience just like you would with any other person, not seeing autism as something that needs to be ‘cured’ but as a different way of seeing the world.
Whilst sharing things about autism to raise awareness and acceptance is great, please think about where that information is coming from. Autism Speaks, for example, are an autism charity in the USA, but they are not accepting of autism at all! They see autism as something that needs to be ‘cured’, they see autistic people as a burden, only a small percentage of the money goes towards directly helping people with autism and their families, those are just a few problems. This article talks about some of the problems with Autism Speaks: https://thecaffeinatedautistic.wordpress.com/2013/03/05/why-i-am-against-autism-speaks-and-you-should-be-too-2/. Some of the things they have done are absolutely awful, so please don’t ‘light it up blue for autism speaks’!
If you do one thing this week during autism awareness week, please watch this video by the National Autistic Society:
And use what you have found out from the video to be accepting of anyone who may look like they are having a difficult time in public. Consider the fact that they may not be naughty, they may have autism which means that they don’t need judgemental comments or stares, they need acceptance.