It’s World Autism Awareness Week this week (27th March – 2nd April)! My little brother, Ramsey, has autism. We’ve known he’s had autism for a while now, but it wasn’t until this week that he was officially diagnosed with autism. Although the majority of people have heard of autism before, not enough people understand exactly what it is. I had an idea of some of the aspects of autism before finding out that my little brother had it, but I really have learnt so much more about it recently. So seeing as it is World Autism Awareness Week I thought I would share with you what I know about autism as well as talking about some common misconceptions. I’m determined to raise as much awareness as I can!
One thing I really do need to point out first though is the fact that everyone with autism is different (hence the name autistic spectrum disorder). In this blog post just because I talk about Ramsey it doesn’t mean that every single person with autism is going to be like Ramsey. Autism not only ranges in its severity, but also in terms of individual characteristics. While some people with autism may hate the feel of certain textures, others may not mind the same textures. While some people with autism are non-verbal, others are verbal. While some people with autism will absolutely hate being in crowds, others will not mind it as much. The list is endless.
Going back to a few years ago, I remember seeing an accident and emergency programme on TV where one of the patients was a two year old girl who had autism. At the time I was wondering how someone could be diagnosed with autism when they’re only two years old. It’s only now that I realise what a narrow view I had of autism, as I now completely understand how a two year old can be diagnosed with autism. For those of you who know my little brother, you will know that he has just turned three. So in case you’re asking the same question as I was a few years back, I’ll talk about how Ramsey has been diagnosed with autism at a young age.
The first thing we noticed that was ‘different’ about Ramsey was his speech. He says a couple of words, but even now he is mostly non-verbal. Ramsey had been attending hospital appointments due to his growth, as he was very big for his age in mainly his height but also his weight. This meant that it was through these appointments that concerns were raised about his speech, and although it was a long process he was eventually referred to the Child Development Centre which is where he was officially diagnosed with autism. During the time before Ramsey was referred there it became apparent that it was more than just his speech. Hand-flapping, head-banging, lining up toys, a dislike of crowds, not responding to his name are a few of the things we began to notice. I remember my mum saying to me, after Ramsey’s consultant had first mentioned autism, that she looked up autism online and the description fitted Ramsey exactly.
I thought that the diagram below was quite a useful one in explaining some of the characteristics commonly seen in people with autism, especially for those who might not know much about it. Again, it is important to remember that everyone with autism is different.
Almost every single one of these characteristics relates to Ramsey, and below I will talk about some of them in a bit more detail:
No real fear of dangers – Ramsey has no sense of danger meaning that you really do have to keep a constant eye on him. He’s so quick as well that you’ll have your back turned for one second and the next thing you know Ramsey is laying on the very top of the sofa very close to falling off with no fear at all. So when we’re out Ramsey will use a buggy. This isn’t because he can’t physically walk. His mobility itself is fine, he just doesn’t have that sense of danger.
Apparent insensitivity to pain – while most children would cry if they bump their head or fall over on a hard surface, Ramsey will just get up and carry on as if nothing ever happened. Although knowing that he is not in pain is a good thing, how we will we be able to tell if he really has hurt himself? Fingers crossed that will never happen.
Sustained unusual or repetitive play – when Ramsey is playing with his toys he’ll often line them up or spin the wheels of his cars again and again. This may seem unusual, but imagine what Ramsey must think of the way other children play with toys? “Why give toys voices when you can make a reallyyyyy long line out of them? (which Natalie can then trip over)”
Insistence on sameness – Ramsey very much likes his routine and gets upset when it changes. Although this is something that I can relate to with dyspraxia, Ramsey gets upset over the small differences that for me wouldn’t be something I’d be upset about. For example, the other day my mum moved his slide so that she could do the hoovering (no she wasn’t hoovering the grass, Ramsey got a slide for his birthday which is inside at the moment) and Ramsey got upset about the fact that it had been moved and tried to put it back to where it was before.
Difficulty in expressing needs; may use gestures – up until a few months ago Ramsey didn’t use gestures to communicate, making it very difficult to work out what he wanted. It must have been even more difficult for him. Imagine knowing exactly what you want but not being able to tell the person what it is that you want despite trying your absolute hardest. I think this picture really helps to put yourself in the position of what that must feel like:
Ramsey has recently started using gestures to communicate, taking your hand to where he wants you to go. He’s even taken my mum’s hand and led her to the stairs quite a few times when he wants to go to bed (the only three year old I know who voluntarily chooses to go to bed!) Yes, it must still be frustrating for Ramsey not being able to communicate what he wants verbally, but he’s come so far recently. Something that Ramsey does say is ‘Taaaaaaa’. This will either be said while passing you his cup (he wants more juice!) or passing you the remote (he wants you to put Thomas the Tank Engine on! Yes, Thomas specifically. I’ll talk more about that later.) He always uses it to express when he would like you to do something, however the other day he did something which put a big smile on my face. Well, I wasn’t even there. My mum was telling me that she made Ramsey a drink and when she passed him his cup he said ‘Ta’ as a thank you. It may seem like such a simple thing but he’s never done that before so it was such an achievement. Ramsey also sings ‘Twinkle Twinkle Little Star’. He knows all of the words and it’s so cute when he sings it. I’ll have to try and get him singing it on video at some point. Although Ramsey doesn’t talk, that certainly doesn’t mean he’s quiet. Whether it’s “Gagagagaga!” or “Mamamamama!” you’ll always know when Ramsey’s around!
Something else to bear in mind is that just because Ramsey doesn’t really talk, that doesn’t mean he has nothing to say!
As the picture says, it’s really important not to underestimate people with autism. Ramsey is so quick to work things out. He’s brilliant with technology, he knows how to unlock an iPod, set an alarm and turn off alarms. Okay, he may not understand the meaning of the alarms but there’s not many three year olds who can grasp the hang of technology as quickly as Ramsey does.
As I mentioned before, Thomas the Tank Engine. Many people with autism have obsessions, and Ramsey’s obsession is Thomas. He absolutely loves both the programme, his Thomas toys and his Thomas books. Other books of his he’ll rip but when it comes to his Thomas books not a single page of them has been ripped. I found out that apparently Thomas is a popular obsession for lots of people with autism. I remember reading on the internet that some of the reasons for this are because it has a clear and predictable storyline along with a calm narration. It was really interesting to read about it as Ramsey would often be laughing his head off at Thomas on TV and me and my mum were sat there wondering what he loved so much about it. Now we know!
Another characteristic that people with autism might have is difficulty with fine and gross motor skills and spatial awareness. This is something that I only very recently found out and it makes so much sense as Ramsey is always tripping over things that are right in front of him. So there’s more similarities between autism and dyspraxia than I thought!
Some of you may have heard that people with autism have difficulty in understanding and expressing emotions. This does not mean that people with autism don’t care about you, they might just express their emotions in a different way. Ramsey may push you away when you go to sit next to him while he’s playing with his toys, but he’ll often come up to you and give you a big hug. Just because Ramsey might find it more difficult to read your facial expressions it doesn’t mean he won’t smile back at you when you smile. In fact, he’ll often have the biggest grin on his face when he sees you. To me, that’s much more meaningful than a ‘hello’ or a wave. Sometimes I’ll start laughing at something and then Ramsey will start laughing and then I’ll be laughing at him laughing and so on. We’ll both end up laughing about absolutely nothing, but it’s good to laugh isn’t it?
Something ignorant I’ve often heard which really frustrates me is when people say that someone ‘looks autistic’. Unfortunately people often say this in a negative way when talking about someone who looks what they would classify as ‘weird’. People with autism look no different from anyone else and this ignorance really needs to stop. The same goes for the other way round when people are surprised that someone is autistic because they ‘don’t look it’. This picture sums up my feelings towards that:
Another major area of ignorance regarding autism is meltdowns. Meltdowns are NOT the same as tantrums. These two pictures sum the difference up well:
While tantrums involve looking for attention and can be calmed down once the situation is resolved, meltdowns are the opposite. Meltdowns involve head-banging and hand-biting, in Ramsey’s case, as well as hitting anyone or anything nearby. As you can probably tell, it’s horrible to see someone in that much distress without being able to do anything about it. It must be even more distressing for the person who is experiencing the meltdown themselves.
However, that’s not to say that people with autism don’t have tantrums as well. Yes, Ramsey will sometimes have tantrums like any other three year old, but when it comes to meltdowns there is a big difference. So if you’re ever out shopping and see a child screaming please don’t automatically jump to conclusions and think that the child is spoilt. They may be experiencing sensory overload which is distressing enough for them and their parents as it is without people’s ignorant comments.
While some days Ramsey will have a meltdown along with a couple of tantrums, other days will be calm. It really is a mixture of both good and bad days.
Although in this blog I’ve mainly focused on how autism affects children, it is important to remember that you do not ‘grow out’ of autism. Yes, with the right support in place someone with autism might be able to make huge improvements in their communication, but it certainly does not just ‘disappear’.
Here’s some important things to remember about autism:
And here’s what you can do to make a difference:
Thank you so much for reading this! Hopefully you’ve learnt something about autism that you didn’t know before and I really hope that lots of much needed awareness is raised during World Autism Awareness Week!