“Human presence is a creative and turbulent sacrament, a visible sign of invisible grace”. John O'Donohue

Friday, 1 April 2016

Seven things I would like to tell you about being autistic

Image from autismacceptancemonth.com
The image shows a cloud or pattern of words in different colours
 that relate to autism acceptance
The month of April is Autism Awareness Month. Some of us are amping it up a little bit and promoting Autism Acceptance rather than Awareness, which to me seems a little more like doing something.   Either way, it seemed appropriate to add my voice to the many other voices that you might encounter this month. 

I have written before about my own autistic experience. If you want to read a bit more about how being autistic manifests for me have a look at  Coming out for Christmas and Getting out of my own way 


I wanted to begin by talking about something that I have noticed. Something that might feel a bit uncomfortable. I'm reasonably "out" about being autistic, and quite active on Facebook and often share or post autism related content. But, in contrast to the flurries of likes when I post photographs of cats, when I talk about autism, I hardly ever get any likes. Fair enough, my Mum likes everything I post, and my autistic friends and naturally going to like it anyway. But really, genuinely, nobody else seems interested. 


Which, in my autistic fashion, makes me very interested. 


I get that autism isn't very sexy, or cute (although lots of autistic people are!) Believe me, I would probably much rather look at videos of singing Huskies too. But the thing is, I am blessed (or stuck depending on your viewpoint) with this neurology, and as much as people might like us all to shut up and get on with it, we autists are actually a bit fed up with that to be honest. And it's 2016 and we reckon that it's about time the world realised that being autistic is a. not going to go away and b. actually quite a cool thing. 


So I have tried to feel between the lines - or lack of them - and try and figure out what people might be feeling when I share articles or information about autism. Is it annoyance? Awkwardness? Embarrassment? Is it just that nobody's interested? Are they thinking "Gawd, is she still banging on about being autistic?"   Or is it just that people don't know enough about it? I am reluctant as ever to start doing the 4 things that, and 8 reasons why type blog posts. I hate them. And for that reason, that is exactly what I am going to do!


So here, for the first time, and probably the last time - my list.


These are things that I would particularly like people to know about my experience of being autistic. Other autists would say and add different things and I encourage you to listen to their experiences too. 


Seven things I would like to tell you about being autistic


1. Autism is not a disease. 

Autistic people don't have "symptoms." Symptoms are associated with diseases. When someone has a different neurology, then there are lots of other ways to describe how that neurology manifests. But we don't have symptoms. Sometimes it is called a disorder, sometimes it is called a condition. These are the clinical ways of referring to it. I prefer to describe myself and other people with autism and being on the autistic spectrum or neurodivergent. 

2. I am autistic. I don't "have" autism. 

Some people prefer to call themselves Autistic, as opposed to the "PC" terminology of "person with autism". I am one of those people who prefers to call themselves autistic. The main reason for this is that I cannot separate my neurology from who I am. I don't HAVE autism. I AM autistic. But some people do prefer to be a person with autism, and that is OK too. 

The other thing I would like to say is that although I have an "official" diagnosis of Asperger's, I much prefer to call myself autistic. Asperger's is on the autistic spectrum, it isn't separate as some people may think. I sometimes say I have Asperger's because, sometimes it just makes it easier for me, and because it seems to make people feel more comfortable. But then I feel ashamed about trying to make my autism easier for people. Generally, for me, saying I AM autistic, rather than I HAVE Asperger's feels much more authentic. 


3. Autism doesn't look like anything. 

Nobody looks autistic. That is because autism doesn't look like anything. Sometimes a person will exhibit behaviours that are perhaps stereotypically autistic, like rocking or flapping or doing repetitive things. But apart from that, it is generally very difficult to tell if a person is autistic just by looking at them. So, when someone says to me "But you don't look autistic" I am genuinely baffled. What is it that I am supposed to look like? Perhaps I should buy a T-shirt?

4. Acting "normal" is exhausting

Autistic people get used to acting in order to "pass" in the neurotypical world. Some of us find that easier than others, but in particular, women and girls on the autistic spectrum are very good at masking their autism. There are many reasons for this, but one is that generally, girls are encouraged to be more social, and have more opportunities to watch and copy neurotypical behaviours. Essentially, we you think that I "seem so normal" it is because I am acting. Please don't misunderstand this as not being honest or authentic. I am definitely those things too. Sometimes painfully so. But  a lifetime of acting "normal" is a hard habit to get over.  Nowadays (now that I actually KNOW I am autistic) then I don't tend to force myself to do things that require a lot of acting, because it is utterly exhausting. And, at the age of 47 I no longer care if anybody thinks I am weird or not. Hurrah for middle age. 

5. Autism IS a disability

Autistic people find lots of things quite difficult, and because it is on a spectrum the range of what people find hard or easy is hugely varied. Neither is it consistent. People can be surprised my my competence in some things, and my real difficulty with other things. And even my competences can vary from day to day, and even one moment to the next, depending on what else is going on. Most autistic people have a level of difficulty with communication, social interaction, sensory processing, and processing information. And our ability to cope on one level might be seriously hindered by too much input coming in on another. For example, I might be having a nice conversation with a friend, and then some  loud music comes on. I might no longer be able to process the verbal communication or interaction, because the music has taken over in my brain. So whilst we might not "look" autistic (see no.3 again) being autistic can and does have an impact on our ability to do "normal" things. 

6. The world is NOT autism friendly

What I, and lots of autistic people sometimes find quite difficult is self-advocacy. When we are going to a new place, or into a new situation, what would be really nice is to be able to say in advance that we are autistic so that certain provisions can be made. The reality of this is that rarely, if ever, are provisions made for autistic people. A lot of this stems from the fact that autism doesn't look like anything (again, see no.3) It isn't like being in a wheelchair, where it is more or less obvious that a building with lots of stairs up to it is inaccessible. (Please note I am absolutely NOT saying that people in wheelchairs have it easy - I KNOW this is not the case) Whilst we might not be hindered from entering a building as autistic people, we might find that it has fluorescent lights, or loud music (or even not loud music), or a plug -in air freshener, or that there is nowhere to sit quietly, or the fact that we are required to speak to people, or any number of things that could easily lead to overload. 

7. Being autistic is a gift, not a tragedy

When autistic people read or hear or see things about how challenging autism is to live with, about trying to "cure" autism, or trying to identify a gene that might actually stop autistic children being born, it hurts. It hurts a lot. It also hurts when non-autistic people try to speak for autistic people, and get it wrong. It hurts when they don't listen to us. I get that for non-autistic people looking at it from the outside, it might seem like being autistic is a bad thing. It might seem that we live in our own world, and that the outer world is a very distressing thing that we don't understand. But that's not quite how it is. Some autistic people can't talk, for example. But this does not mean that they don't have things to say, or that they can't communicate. Talking isn't the only way of expressing.  Being autistic gives a person access to a hugely rich inner experience and a perception of the world which, if understood and allowed to express, has the potential for utter amazingness. I believe it has the potential to change the world. 

My own experience is that the biggest difficulties I faced stemmed from not actually knowing that I was autistic. When my autism was identified (at the age of 45) everything fell into place. I'm not saying that suddenly the world made sense, or became easy to be in, because it is the same old world as before. But I made sense. Being autistic makes sense to autistic people. Which is why we wish, more than anything, that if you want to understand autism, you just ask us. 

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