My brain feels full of ping-pong balls at the moment. I’ve not blogged as much in the last few weeks as I had been doing and, as a consequence, I’m fizzing with all sorts of thoughts that are bouncing against one another and messing with my thinking, so I’m not entirely sure what will spew out as I write this.
Getting used to having an autistic spectrum condition – not just these last five months but also bringing the whole of the rest of the 44-year-old me to autism, getting her to come to terms with it and giving it to all of the mes of the past is like being thrown up in the air. I’ve been floating through life since February. Therefore, understandably, my thoughts have mainly been about autism and Aspergers, and how it affects me and my family, and the outside world’s perception – not just of me but also of what I say. I see how I am misunderstood a lot.
I’m a little worried people have recently lowered their expectations of me: that they may not trust my fury at injustice or others’ bad behaviour; that they may question my judgement; that they may think I am less capable of being a mother, of independence, of rationality, of empathy. I’m even wondering if they may be inventing unreasonable behaviour where it did not previously exist. That is, that something a neurotypical person may get away with, an autistic person may not get away with because of our “baggage”, if you like. To know someone is autistic automatically makes him/her seem more unreasonable. It happens. I see it. I’ve also read very very many social network posts by desperate “Aspies” crying out for the misunderstanding to stop. Unless you’ve been trawling through the groups yourself, you may struggle to believe what an enormous problem it is.
To be honest, I occasionally feel a little patronised. The unreasonable one must be the autistic, right? It’s almost like an escape route for non-autistics – a cheap way of winning perhaps. Am I being sideways glanced now, rather than being seen as a whole and an equal?
I feel a little as if I have been treated a little differently. Just a little mind you. I feel a little doubted when I raise concerns sometimes. And I feel people not trusting my sense of humour quite so much. Surely that can’t be sarcasm?! She’s autistic. Yet, yes, I am as sarcastic as ever! When I joke about my life, people are trying to fix me instead of joining in with the joke. If I said I tripped while out on my walk today I’m beginning to worry that people are now going to start saying ‘You shouldn’t be out walking alone,’ instead of ‘Whoops! You clumsy arse! I do that!’ (I haven’t tripped today. Yet…)
When I get cross about something and my husband rolls his eyes and says nothing, is he now processing my anger differently? Has he automatically put it down to autism and therefore not worthy of belief or debate or respect? Has he assumed I am being unreasonable?
Is he? I don’t know.
I guess, because I’ve been so open about my condition and my self-discovery, I’m going to have to learn to live with the paranoia of knowing people know now and I’ll always be wondering…
And Twitter has gone deadly quiet. I seem to have lost Twitter.
Is it the honesty?
I see how people see problems in my honesty, where I simply see honesty. Or is it the freakish fearful way society still views autism?
You, Dear Reader, are reading this through your eyes. You may have made some kind of conclusion about how I must be finding my autistic spectrum diagnosis to be a burden after all, or you may be nodding and thinking ‘See, I knew labels were a bad thing!’
The reality is that Asperger’s is a welcome diagnosis, a welcome label, and welcome identity for me.
My problem is how some, some, other people treat me, perceive me, read me and reposition me. What I want is not for people to decide what I am or am not capable of suddenly, what I must and must not be thinking, but to ask me – because I am in a better position than ever now to know what I am capable of and why some things seem daunting. When I didn’t have Asperger’s (that I or anyone else knew of) I was worried that people’s expectations of me were too high. Now I worry that they are too low. It’s like some assumption that I’m all autistic all over the place now and incapable of everything I’ve been doing for years, and all my days are filled with autistic awfulness. Yes, you can put my habit of screaming as if I’m being murdered when a door slams unexpectedly or the dog barks right next to me down to my autism. That is horrible and I shake for ages afterwards. I am easily terrified, easily startled, easily inconsolable if a noise breaks my safe noise level or breaks into my safe space. It’s all I can do to stop myself from putting my hands over my ears and crying. We can call that an unavoidable draw-back of my autism and my enormous fear and sensory processing problems and my problems dealing with the unexpected. And there are things that are an anxiety problem, such as going somewhere where I know I will have to deal with lots of people in lots of different ways. These are not new problems.
But my opinions, my abilities, my strengths, my rationality, my empathy, my sense of humour… all still stand too. And I am prouder than ever of my strengths. I see just how strong I have been, and just how capable – against all the badly-packaged stereotypes which cloud the individual variations. But I don’t feel others think I am strong or doing well and I’m trying to work out why.
It’s partly my fault because of my honesty and my blogging. I just don’t share enough of the good stuff, I guess. It’s difficult though. I’ve never been a bragger.
I write about a bad day and write nothing else this month, therefore I had one bad day in a month? Or were they all bad days? Well the truth is, most of them were pretty normal and average and I must have looked like a pretty ordinary person going about her pretty ordinary life to outsiders. The good thing is, that now I get through normal and ordinary and I think, ‘Well done, me.’
I’m not going to stop being honest. I actually don’t think I can. This will of course result in people thinking I am useless or not coping, but I feel duty-bound to share and reach out, and talk and talk and talk, and keep talking about autism and Asperger’s until everyone knows you can’t stereotype us and that the label is our label to do with as we choose. I want to support the autism community, and be another voice striving to be heard and understood.
I think what I’m trying to say is:
I’m autistic – don’t feel sorry for me!
I’ve got Asperger’s – don’t stereotype me!
I have autistic spectrum problems – don’t think I’m not capable!
I have Bad Aspie moments – don’t think I’m always like that!
I’m honest – and I’m going to try harder to be honest about the good stuff too!
When I say, ‘this is difficult’, ‘that was awful’, ‘this is painful’, ‘I didn’t want to do that’, ‘I struggled with this’, I often forget to say, ‘but I did it’, ‘I got through it’, ‘I made a conscious decision about the best way to cope with that’, ‘Holy crap – I’m amazing!’. And I often feel exhausted and torn, like I’ve climbed a mountain or wrestled a crocodile, but proud of myself, glad I survived, and the big kid in me wants others to say ‘I’m impressed. I know it’s tough for you sometimes. Go, you!’ Only they don’t because I’m an adult and they can see no mountain, no crocodile, no amazing feat.
Well done, me.
I don’t want to leave the comradeship and solidarity and common struggle I’ve seen in the last few months there where it is: hidden, desperate, misunderstood, outcast almost.
Please keep talking and sharing.