Wednesday 1 April 2015

Autism awareness week

This week is Autism Awareness Week. We got a whole week! I'd guess that'd be something to do with the rising incidence of autism in the UK and across the world.

I am a girl who is autistic. This makes me a rare bunny according to current estimates - some of this it seems is to do with the 'missing diagnosis' of girls and women with autism, some of it is probably to do with the gendered diagnostic questions (do you collect things? Examples, insects or toy cars) and some of it is with the focus on the 'male brain' aspect of autism..

It also feels important to differentiate (or not) between classic autism and high functioning autism. For some autism comes with a learning disability element. For some it doesn't. For some it is physically disabling. For some it isn't. For some it affects vision. For some it doesn't. This is why autism has been reclassified as an Autism Spectrum Disorder. Ignore the disorder bit - that's not helpful. I am ridiculously ordered. But spectrum? Yes. I am at the high functioning end. It means my IQ is...a number greater than average. Lets leave it at that.

So what do I wish you knew about autism as an autistic person? What do I hope would make you think twice before saying or thinking something derogatory or harmful? What do I think would make you have more patience, to enable you to be kinder?

1. Social cues

Lets get this straight. Rudeness is intentional. There is intent on the side of the person who is not saying good morning, or who is interrupting you inappropriately when you're already having a conversation to be rude. They are aware they are being rude. They just don't care enough to follow your social rules.

Autistic people are not intentionally rude. It genuinely never crosses our mind to say good morning if there's something more important to say first. Why would we say good morning if there is a broken lift we've just been stuck in, or we're exhausted from the journey from hell? Oh wait, we'll get to that in a moment, the thing about interacting with people when we're in 'overload' already. Sometimes, take it from me, you'd be glad we hadn't started any conversation, you'd end up with a garbled and confusing run down of our journey or experience trying to obtain a coffee.

Interrupting inappropriately is a very similar thing. Generally, we're coming to you to talk to you for a reason. That reason is sometimes on a loop inside our head - either as a way of retaining the information so we can remember what it was we wanted to talk to you about, or because it's got stuck and is looping without us wanting it to. Nevertheless, we need to get it out. Now we can't read you at all - we'll get to body language in a second - so a lot of the time we don't realise we're interrupting inappropriately anyway. As far as we can work out, when there is a gap in the conversation it is okay to talk, because it seems to us that that is the point where you have chosen to stop talking. This might seem silly to you, but you don't realise how you process these cues and understand them instantly. You do this without even thinking about it. We can do it but we have to think about it. That takes processing power. 

So maybe, next time someone doesn't say good morning, notch it up to not being aware, not ignorance or rudeness?

2. Body language

Have you ever noticed that there are some men/women who haven't picked up on your clear signals you're interested in them? Been confused when you've got 'interested' signals back but never been asked out? Possibly that person was autistic. 

Dating is at the advanced level of human interaction - everyone struggles with it a bit. Oddly, it's not something I ever have. 'I like you, shall we go out for dinner' cuts straight through a lot of the...politics of dating, I've found. In fact in this respect, I believe autistic people are way ahead of those who are not. Pop that in the superpower pot. Unfortunately, there are things far more complex than dating for us. Like when to say good morning and when not. When someone does want company to lunch and when someone does not. Get these things wrong once or twice and people put it down to you having a bad day. Repeatedly get it wrong and it can lead to people getting very cross with you. Now that sounds like it might be out of proportion, and of course it is. Except a lot of the time, people don't actually want to be at work for whatever reason (children, hate their job, not getting paid enough, tired, hungover) and after a while, the person who's not reading body language can easily become a target for whispered comments and being avoided in lifts. It winds people up. 

Not as much as it winds me up though, I'd wager. Because time after time I have found friendship groups closing and work teams closing against me. I talk too much or I don't talk enough. I never get it just right. Adding it to the above and it's not a great combination.

So next time someone is doing something which is annoying you, maybe tackle it kindly? Take that person aside and gently explain to them what it is they're doing wrong? Similar to how you'd tackle someone on an issue of personal hygiene perhaps? 

3. Sensory overload

Everyone on the spectrum has different tolerances. Everyone has different triggers. Some of us know our triggers super well and will do anything and everything to avoid them, despite your best efforts to tell us 'we'll enjoy it once we get there' or my personal favourite 'you'll feel better when you've got it over and done with'.


I won't. What you see as at best a weakness of character and at worst wilful avoidance, is for me a case of avoiding a meltdown. Now meltdown brings to mind images of a child on the floor throwing a tantrum, screaming, crying and kicking. And yes, you know what, even as adults that's what a meltdown looks like for some of us. Judging? Smirking? 

Here's what's happening in our brains. A complete detonation of every sense we have. It usually starts, I think, with one sense overloading. It's like a circuit in your house. The kettle doesn't turn itself off. The kettle keeps boiling. Steam gets in the plug. The plug shorts. The fuse trips. That's my brain and the worst thing is? I can feel it happening and yet past a certain point, I can do nothing about it all. See also anxiety which we'll talk about in a moment. But my meltdown doesn't look like your stereotypical version of a meltdown. Perhaps it's because I'm a girl. There is growing murmurs that while a typical man will act out, a typical woman will internalise. I internalise. And as I do I shut down. As my senses become overloaded and short out, my brain slowly shuts down to protect itself. This can manifest as anything from a literal inability to speak, to a looping - either a physical one or a verbal one. The only thing that will make it better is being left alone, and ideally removing all sensory input completely - something I'm sure you will all be aware is becoming increasingly difficult in this world of ours.

So. I am now the expert in avoiding my own triggers. Next time I say 'no I can't do that' please trust in me there is a really good reason that I cannot do that. Perhaps not now, perhaps not with you. But not now.

4. Anxiety

'We all get anxious, what you making a big deal out of now?'

If anxiety were a scale from one to ten, most people would start at zero. Most of life would be a zero, with occasionally difficult things flicking the needle up higher, in direct proportion to the difficultness of the thing currently being encountered.

I start at 3 or 4. I never have no anxiety. I have learned to manage this. It started with accepting the anxiety, a mindful approach. Now it focuses and is intertwined directly with the above. Managing and avoiding my triggers has reduced my anxiety almost down to a constant 3. But the problem is, when you're starting at 3 and not 0, it can look very odd to someone who doesn't realise that when you suddenly become what appears to be massively anxious over something relatively simple like going on a shopping trip to a new place. You would rise maybe 1 or 2 points on the scale, to 1 or 2. I rise 1 or 2 points to 5 or 6, You see the problem? And when combined with the next thing on the list in can be mighty tricky to manage.

5. Early warning systems

I don't have any. In an MRI, if you looked at my Amygdala when a source of stress were introduced which would slowly escalate to become a major problem, my amygdala wouldn't fire. Yours would. That's because you can see a problem coming, your body tells you, then you avoid the problem. I don't get the early warning. So the first time I know I'm anxious is when I am at 5 or 6 on the 1-10 scale. Or at least I would if I only relied on my Amygdala. I do not, of course, now rely on my faulty Amygdala, I instead rely on my stomach. But until someone helped me identify my alternative early warning system, I was lost. And I spent a lot of time extremely anxious. To the point where I was having full on anxiety attacks 2-3 times a day every single day of the week for over a year. Sound tiring? Yep. It was. 

So when someone is freaking next to you and you don't know why, it's not that bad, really it's not, maybe share that? 

6. Superpowers

Tricky one this. I hate the word Savant. Quite a lot of us do, anecdotal observation tells me. It's an ugly word, harsh and angular. That probably doesn't make sense to you. But words have shapes, and sounds and a 'something' attached to them which I can't quite explain. Some words are nice and I use them a lot. Regular readers will know which ones. And some I dislike intensely and try to avoid using on pain of death. Savant. One step away from spitting. This, I suppose ironically, is perhaps one of my superpowers. Words aren't just words.

I also hear words. I read aloud in my head. On Twitter, I hear the tweets being spoken by the people who've tweeted them if I've met them. I am far less likely to misinterpret the tone of a tweet from someone I have met. 

This may be linked to the next superpower which is the ability to write the things I write for CIO and Forbes entirely in my head without writing a note or a draft. I don't do drafts. Things float through my head in the preceding week before writing an article and then I sit down and write it - usually in about an hour. How long did it take me to write the article? An hour. Except of course it didn't. It doesn't matter if the article is 300 words or 3,000. This is the way I work. 

Then theres music and colour. Sensory overloads also come with one level down, which is sensory intensity which is the right side of not good. So sometimes I can go to a gig and it's horrific and we end up leaving after an hour. It'll be a combination of heat, noise, sound levels and balances, lighting, the venue and the people within it. But sometimes, just sometimes, gigs are the best places on earth. A perfect storm of lighting, singing, dancing, people, atmosphere, the right level of happy drunkenness, perfect sound levels and a band who are happy to be there. Those are the moments when I forget I must fit into everyone elses idea of what normal is and I just switch off. I close my eyes and I dance and dance and sometimes I open my eyes and find I have gathered fellow inhibitin losers beside me and we look at each other, grin our faces off and disappear off again. And not a drop drunk or a substance imbibed. It is by turns the most beautiful, but also the most intense place to be and they are the moments which fuel me.

Unfortunately...well lets talk about that next...but if you ever see a girl with her eyes closed dancing badly under the lasers with the silliest grin on her face you've ever seen, it's me. Unless my eyes are open, don't interact. Don't touch. Just let me be.

I also have almost perfect visual recall. I have to concentrate, I have to mentally take snapshots. But I'm the girl who knows where everything is in her suitcase two weeks after she's packed it. Lost something? I'll tell you where it is, even in your house. Changed something since I last visited? I'll notice. I can read a page of a book, close my eyes and reread the page. I can recognise a lot of songs from the 1st bar. But I can't remember any of the script of my favourite shows which is a good party trick to have. I used to be able to remember conversations months later word for word but my memory isn't as good as it once was. 

I can learn anything. Well almost anything. Medical stuff confuses me a little bit but I understand the basics of neurology despite never studying it, see also quantum mechanics, art, Tudor history and a few other things I never even studied at GCSE. 

Just don't use the word superpower in my hearing. I get to call them superpowers, they're my bodies compensation for the utter fails in other areas. You call them superpowers and I'm going to offer to put my knickers on over my jeans. Just. Don't.

7. Concurrency

We come with other stuff more often than not. Some people just get blessed with autism. Others with autism and anxiety and depression. Yup, hands up (all under control now). But there is a whole long list of 'and x' that people with autism seem to be more likely to need to deal with. Dyspraxia and dyslexia are quite well publicised (I'm clumsy but for different reasons). 

Hypermobility unfortunately seems to be quite common, especially in women. And it seems in me. My knees dislocate and 'slip' out of joint. The bones in my feet occasionally get confused what order they're supposed to lie in. My little fingers stick out at funny angles and I've currently got a sprained elbow. I've literally sprained my ankle in socks on our kitchen floor. Fish oil might help your joints. Last I looked it doesn't stop joins dislocating. My joints dislocate probably because the collagen is faulty. Fish oil doesn't help with collagen. Neither do collagen pills. Please don't say something ridiculously stupid in an effort to be helpful. I don't want you to be helpful. I'm not telling you I projectile vomit when I come around after fainting to ask for your help - I'm telling you so you don't get covered in vomit. I've mostly got the not fainting in the first place covered....mostly.

So there you go. 7 things I wish everyone knew about autism so that they didn't say stupid, insulting, judgemental things to me. I reckon I spend the other 51 weeks of the year trying to fit into your crazy world with its invisible rules, faces that all look the same, noise that's often intolerable and in way way too close proximity. I reckon this week I get to tell you ways you can make being in your world, under your rules, a little bit easier for me.

Let me know if it helped.


  1. Of course it helps! Anything first hand helps. The problem is that not many with autism get to blog it. Well done lass.

  2. "Autistic people are not intentionally rude. It genuinely never crosses our mind to say good morning if there's something more important to say first. Why would we say good morning if there is a broken lift we've just been stuck in, or we're exhausted from the journey from hell? Oh wait, we'll get to that in a moment, the thing about interacting with people when we're in 'overload' already. Sometimes, take it from me, you'd be glad we hadn't started any conversation, you'd end up with a garbled and confusing run down of our journey or experience trying to obtain a coffee."

    Love it. :D And that last paragraph too. Thanks so much for sharing.

  3. Fascinating post. My daughter has Sensory Processing Disorder and is also possibly high functioning autistic, I am on the lower end of the spectrum, so a lot of what you say has me nodding in agreement. It would be so nice if the rest of the world got it, just a little bit!