Today is world autism awareness day and I have spent all day staring at this screen wondering what to write. Should I write something positive? Negative? Weighed up neatly like a set of weighing scales? It is hard to know. I have noticed a trend in blogs and articles today though. The majority are either about how super amazing it is to have autism and the others about how badly it affects others, usually told through someone else’s voice (that’s not a problem, just an observation). Something I noticed is that there is very little from people like myself who are diagnosed with autism rather than Aspergers (again, not a problem if you or your loved one has Aspergers) that is honest. Like really honest.
If you saw me in the street, you might think “hey she seems pretty high functioning”. That’s when I am not skipping along flapping my hands and squealing uncontrollably (It makes me feel good in an otherwise chaotic environment) or having a very public meltdown which happens more often than I would like. I can talk, write, read and do many things that other autistic individuals are unable to do. Reading, writing and quoting (rather than conversing) come easily to me.
AH SO YOU’RE A SAVANT!? Everyone screams…
No. I really am not a savant. In reality only about 400 true savants have been discovered in the world. That is a very small amount of people, but obviously people are fascinated in savants and as a result they often get more exposure than us run of the mill middle autistics. In reality, savant syndrome is a seperate condition which, although sometimes linked with autistic spectrum disorder, is sometimes seen in people without a diagnosis of ASD like Kim Peek who actually had a brain condition which meant the two sides of his brain didn’t connect properly. I do have what is known as “splinter skills” which is why I am pretty good at reading, writing and learning foreign languages (talking them is rarely a thing). I like to find the patterns and similarities). I, like most middle autistic people have an incredibly spiky profile. Most people’s IQs are fairly straight. Mine looks like the line on a heart monitor!
So what do I struggle with? Basic conversational skills would be a good place to start. I know how to talk. Mum says if talking were an olympic sport, I would win gold. What I don’t know how to do is communicate. I will tell you about the latest episode of Family Guy, stuff about neuroscience, moan about politics (that’s a more recent addition) and just generally natter/rant on about anything that comes into my head. Literally anything as one of my support found out when I suddenly burst out with the question “How do you sex a tortoise?” (Answer at the bottom) Luckily my support workers are VERY good listeners! They have learnt that it is not wise to offer their own opinions on the things I talk about because in my head, things are fact. They either are or they are not. I think in black and white. With age and practice, learning to see the grey areas is starting to happen, but for the most part if you try and have a debate with me expect to see a humongous meltdown! This is not because I am a spoilt brat, but rather because it is a conversation that my brain was not prepared for. Scripting is easy when people just nod and agree, when they say something unexpected it can be terrifying because it resets the whole string of thought! Unfortunately, because I am “high functioning”, these meltdowns are often seen by others as me being stubborn, rude or defiant. They don’t appreciate the fear and anxiety behind the behaviour.
So a lot of autistic people and their families talk about meltdowns. Meltdowns are different for every autistic person so I won’t go into a generalised discussion on them but rather explain my own meltdowns. My meltdowns are 90% of the time triggered by anxiety. I have suffered from sensory overload and accompanying anxiety since I was about 6 years old when I had my first panic attack at school because the dull light outside was making the fluorescent tube lights in the school hall descend upon my head and try to crush me! Well that is how it felt, obviously as a semi-sane adult I know that is impossible but as a 6 year old with poor communication skills and living in a world that was trying to kill me in every way possible, it was quite plausable that the lights were trying to squish me. As a child my meltdowns could look similar to temper tantrums except giving in to what I wanted would not resolve the “tantrum”. I liken my meltdowns to the behaviour of old computers. When they were being slow, we always used to keep clicking in some vain attempt to wake the bugger up, however the reason the computer had locked up in the first place was information overload, so by clicking we were adding more “sensory” input to the computer and therefore prolonging it’s agony and occasionally causing a blue screen or shut down. My brain is the same. People need to leave me alone when I am overwhelmed but all too often they will keep clicking my buttons and I end up in full, violent meltdowns.
BUT AUTISTIC PEOPLE AREN’T VIOLENT!?
Well, although a lot of autistic people abhor violence (myself included), for many of us, violent or agressive behaviour is a part of our autism. This is not the same as malicious violence, rather it is kind of linked to the meltdowns and inability to communicate our feelings. Put yourself in my shoes for a moment (something I cannot do is put myself in other people’s shoes. Of course I can literally, but they yell at me to stop messing around…). Imagine that you are in a constant state of fear. You stick to routines that appear ‘rigid’ or ‘bizarre’ to the people around you in order to keep some sense that this world is not completely and utterly terrible. You flap your hands and bounce to try and calm down as you can hear a loud fire alarm going off in the background, plus there are a lot of people banging into you as it is busy. You can see the faces of the people, but they all look flat. You cannot see what the faces are trying to say. You can just about pick out happy, sad and angry, but anything else is a mystery. Some people just look super angry all the time to you because you can’t see the difference between someone who looks a bit annoyed or miserable or someone who is about to smack you in the face. You feel a bit sick with the anxiety and you are shaking a little bit. The colours are too loud. The noise is too loud. Someone walks past smoking something a little bit illegal. Another person bumps you. You are getting really frightened now. Everything feels like it is crushing you. You want to run but you can’t. The person with you, baffled by your behaviour suddenly grabs your arm and tells you to “STOP THAT BEHAVIOUR!” Without even thinking about it, your arm swings out and smacks the person in the face. It all happens so fast and the next part can be a bit of a blur as you are wrestled to the ground in a hold and being yelled at for being “bad” and “embarassing” the person holding you.
That is just one example of how a meltdown can become agressive. Please let me know if you would like to hear other examples (I don’t want this to turn into a 17 page essay…). Thankfully, the past few years I have only lashed out on about three or four occasions which is well down from the 20+ incidents I used to have. I attribute this in part to growing older and partly to learning how to recognise my anxiety and control it before it hits the anger point. Although most people know us autistic folk struggle to read other people’s emotions, they may not realise we also struggle to recognise our own. For many years, I didn’t have a name for my anxiety and it was called the “swirly feeling”. Because of this, for many years my anxiety was missed by professionals and instead I was labelled as “challenging” and having a severe “anger management problem”. Now that I have learnt to control the anxiety better, the anger rarely rears it’s super ugly head. It would be easy for me to just sweep my past agression under the carpet, but I feel it is important for people to realise that for some people on the spectrum, this is a real problem. A lot of parents, including my own Mum, blame themselves for their child’s behaviour as they cannot understand why their otherwise fairly happy and content child suddenly snaps. This is why I feel it is important to be honest.
We’ll finish this off on a less sucky subject, but one that can cause a lot of problems and confusion to neurotypicals (or Normies as I jokingly call them). Fixations and obsessions. For some people, a fixation can become a good thing. It can allow them to develop a career if they are able to work as an adult. It brings comfort through difficult times. This is why you will often find autistic people who, now adults, still happily watch programmes aimed at toddlers like Thomas the Tank Engine. Until my VCR broke, I used to watch Pingu obsessively even though I am 29. The video wouldn’t change. The same episode would happen again, in the same order with the same sounds (For this reason I am unable to watch the DVD version of Pingu as they redubbed it!). In such a chaotic world, having something to watch over and over can feel so comforting. I have Trapdoor on DVD. There is one episode where the main character Berk says “If you’ve got a problem, stuff a worm in it!” He stuffs a worm in a burst pipe, but the worm ends up shooting out after making a funny squeaking noise. It makes me laugh every single time. It never gets boring! This is where I can annoy other people though, as I will rewind the DVD and watch it again. Then again. Then a few more times… Generally I do this when I am alone now as I know it pees people off but as a kid my Mum was constantly telling me to stop pressing the buttons on the VCR! My copy of the little mermaid got so stretched that the colour completely faded for the first 10 minutes!
Please let me know in the comments or on my Facebook page if there is anything you would like to know more about. If I can answer it, I will.
In summary (you can tell I used to write real essays…), autism is not one single thing, nor is it two things; severe and savant. Autism for me, can be disabling. Others tell me to see it as the world disabling me, but while I do think to some extent this is true, the world will never be completely autism friendly (in part because what distresses one autistic person could be another’s way of calming down!). All we can do it keep raising awareness of autism, teaching people how to understand and accept the individuals living in our communities and just being a little kinder when we see a kid or an adult throwing a ‘fit’ in public (stop criticising the parents! A good smack doesn’t work!), when we see someone who looks anxious or scared.
Oh yes. You can usually sex a tortoise by looking at the shell shape. Males have a ‘concave’ shell in order to mate the female…