1.
Some ate plants and some ate meat some ate fish and some ate beasts
Imagine someone who studies dinosaurs actually meeting a dinosaur- they would love checking out its tail, teeth and feather dusters (which they have been reading about for so long- although I don’t think they actually have dusters) but they would be utterly terrified too. They know exactly what the dinosaur is capable of.
I’m finding it hard to write this post because I am shy of saying the words out loud. It’s Autism Awareness Week and one way to make others aware is to not be self-conscious about telling your story. However, people like certainty- they need proof. The spectrum is so fluid that often this proves difficult. Pursuing a diagnosis has its own issues- it’s a double edged sword.
Some feel there is no need for labels, and I understand that too, we know so little about the brain. However, the older I get the more I can see how my experience has not been typical, and I do look for explanations- I’m human. Although I have had trouble accepting that fact, and although I still am wary about defining my behaviour in any particular way, I also need to find my place. As David Byrne says ‘I’m just an animal looking for a home’.
I’m finding it hard to write this post because I am shy of saying the words out loud. It’s Autism Awareness Week and one way to make others aware is to not be self-conscious about telling your story. However, people like certainty- they need proof. The spectrum is so fluid that often this proves difficult. Pursuing a diagnosis has its own issues- it’s a double edged sword.
Some feel there is no need for labels, and I understand that too, we know so little about the brain. However, the older I get the more I can see how my experience has not been typical, and I do look for explanations- I’m human. Although I have had trouble accepting that fact, and although I still am wary about defining my behaviour in any particular way, I also need to find my place. As David Byrne says ‘I’m just an animal looking for a home’.
2.
It's getting hard to be someone but it all works out
Once in primary school I put my hand up and asked if the teacher had watched last night’s episode of Dallas as I was genuinely interested (it was the day after the one where Pamela Ewing woke up from her ‘dream’ that basically negated an entire series) and she told me to get out of her classroom. I guess it seemed cheeky but I wanted to talk about how something could all be a dream like that, it was so strange to me.
By the time I went to secondary school I had become bolshy due to constantly being in trouble. At that age if you get named something you go with it. Autism in girls is only just beginning to be understood so my behaviour was painted as disobedience, always. The lines were blurred. As a teenager I had what I can only describe as meltdowns- huge emotional fallouts where I would cry and cry, especially if I was faced with change. I didn’t understand the rules of socialising, had no idea why people might lie or cover things up and couldn’t work out why some people- including teachers- were mean to me- it made no sense.
Meeting people, talking about myself, getting stranded at parties with no lift home, going to strange boys houses and regretting it- all of it was coloured by a loneliness that I couldn’t name. I didn’t exist in the same way that everyone else did, so none of it mattered. I had zero boundaries and constantly put myself at danger. Some of it was fun- it’s nihilism really. I’m not sure I’d be happy if my daughter did the same though.
By the time I went to secondary school I had become bolshy due to constantly being in trouble. At that age if you get named something you go with it. Autism in girls is only just beginning to be understood so my behaviour was painted as disobedience, always. The lines were blurred. As a teenager I had what I can only describe as meltdowns- huge emotional fallouts where I would cry and cry, especially if I was faced with change. I didn’t understand the rules of socialising, had no idea why people might lie or cover things up and couldn’t work out why some people- including teachers- were mean to me- it made no sense.
Meeting people, talking about myself, getting stranded at parties with no lift home, going to strange boys houses and regretting it- all of it was coloured by a loneliness that I couldn’t name. I didn’t exist in the same way that everyone else did, so none of it mattered. I had zero boundaries and constantly put myself at danger. Some of it was fun- it’s nihilism really. I’m not sure I’d be happy if my daughter did the same though.
3.
Out along the edges, always where I burn to be
I slip through the cracks constantly. I’ve learnt to live like this, I’m OK now- but imagine trying to do a job interview or speak seriously to another grown up. You’re very far away and make inappropriate jokes. I find talking to kids much easier, they instinctively understand where you’re coming from. Animals are fine too- they exist within time in a similar way to me, they understand ‘zones’. There are morning zones and excitement zones, but yes also danger zones. Sometimes you can find yourself walking straight into a sad zone, like a cold bit in the woods. Zones make more sense to me than time.
Family lore laughs at the fact that I couldn’t read a clock until I was 12. I have problems following rules in general, they make me physically uncomfortable. If someone gets a board game out I literally want to cry. Patterns have always been hard for me unless I’ve made the rules myself, then they are brilliant. (Some of the best art is made by people who make up their own rules [some of the worst too if we’re being honest]. You can take a rule and bend it to make it yours, then it’s not scary anymore and you are not owned by it. This is where I’m happiest).
Family lore laughs at the fact that I couldn’t read a clock until I was 12. I have problems following rules in general, they make me physically uncomfortable. If someone gets a board game out I literally want to cry. Patterns have always been hard for me unless I’ve made the rules myself, then they are brilliant. (Some of the best art is made by people who make up their own rules [some of the worst too if we’re being honest]. You can take a rule and bend it to make it yours, then it’s not scary anymore and you are not owned by it. This is where I’m happiest).
4.
And all the world is biscuit-shaped, it's just for me to feed my face
When I was a kid I jumped off a bridge into a river as I didn’t like the catsuit I was wearing. It had white piping on it and it made me really uncomfortable- I wrote a silly poem about it. I crave comfort. I love being at home with its deliberate zones. At the moment we are all social distancing because of coronavirus but my life really hasn’t changed all that much. I like people the way I like dinosaurs- I think they are really cool but they also take up a lot of space, the sheer scale of them can be overwhelming.
I’ve beaten myself up unnecessarily for feeling this way, but if you say it out loud then nobody actually cares. Most people are happy for others to do whatever they like but after a lifetime of being treated as if you are wrong in some way you become very adept at feeling as if you are wrong in some way. Perhaps a diagnosis would act as a magic key that would unlock all the secrets of the past, or give me some kind of sparkly pass that explains away my ‘wrongness’, I don’t know. I suspect there are positives I can’t even imagine. It’s probably just a matter of time.
I’ve beaten myself up unnecessarily for feeling this way, but if you say it out loud then nobody actually cares. Most people are happy for others to do whatever they like but after a lifetime of being treated as if you are wrong in some way you become very adept at feeling as if you are wrong in some way. Perhaps a diagnosis would act as a magic key that would unlock all the secrets of the past, or give me some kind of sparkly pass that explains away my ‘wrongness’, I don’t know. I suspect there are positives I can’t even imagine. It’s probably just a matter of time.