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Well done, me!

shutterstock_103132238My 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.
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.

15 Comments Post a comment
  1. I have to confess that I struggle with this post – not because I don’t ‘get’ it, oh boy, do I ‘get’ it ten times over, but I cannot see why anyone would think differently of you because you have been told officially that there is a name for how you are. Would people doubt your humour if you’d dyed your hair green?
    I guess I’m not making sense, sorry, today is a nonsense day I think.
    Oh, and the twitterspheredom has gone quiet on me as well!


    • To be honest, I seriously considered deleting this post* because I wasn’t sure I’d accurately turned my feelings into words. I felt the longer I spent writing it the less sense I was making. And I felt it didn’t read back the way it felt when I wrote it. It looked like it was too much about me when I wanted to highlight general concerns. I suppose the difficulty there is presuming I can speak for others, so often I stick to “I” and “me”.
      I think, as I write at the beginning, I had too many thoughts stored up and they were fighting to get out. People shouldn’t think differently of you as a result of a label and some will think they won’t but I expect there is some deep-seated tweak as to how one behaves around someone once they know they are autistic.

      And, as we all know, deep-seated tweaks are an imposition 😉

      *I didn’t delete it because I went away and when I came back there were loads of comments 🙂


  2. Lin #

    Rachel, I’m so grateful for you, what you shared I felt it I understood because I am in it too and recently discovery too. Your writings your honesty your feelings and thoughts here help me a lot and for me able to share n explain to others better. I had tears ran down while I read your latest blog. Thank you dear Rachel for being there for me and other Aspies. you are amazing and beautiful.


    • Thank you so much for your comment. It means a lot and is really helpful when I’m full of self-doubt. You are so kind. And you made me cry too


  3. Sending space-invading-appropriate hugs.
    I will admit I read your posts now through a different filter (since you “came out”), but I don’t think any the less of you. Whereas before I might have felt “that was a bit blunt :-¦ ” now I don’t get the possibly slightly irritated feeling about the blunt? Now I just feel the directness is you, and I understand where it comes from, and to be honest, the feeling off-put by it was my issue, not yours.
    I don’t want you to stop bloging, because I learn so much when you do. I also don’t want to pressure you to blog because I know how horrible I feel when I have an expectation hanging over me and my head isn’t in the right place to perform. Let me leave it in the middle ground, I will happily read what you post, and vacuum it up, whenever you feel comfortable posting. As for the worrying that we feel you’re having all shit days if you only post about the one shit day, honest answer is, we don’t think about it / you that much, but I mean that in a nice way. If I was asked, I would assume you were doing OK, posting random birdies, and generally getting on with you life, and feel sorry for the shitty day when they happen.


    • Thanks, Laura. As I said above, I did consider deleting this post. I was worried that it came across as too self-indulgent and too self-interested. It also made me see how things written as the thoughts tumble out of our heads are so much more permanent than words used in conversation. In conversation people move on and don’t have time to pick up on everything said. And yet I still prefer to write in a conversational way and risk this problem arising again and again! I notice how my writing can give priority to conversational snippets used along the way over the stronger feelings and the conclusion. One way to deal with this would be to spend a lot longer editing and rewriting and turn it into something more professional but I think I would never end up posting anything if I stopped to worry about every wrong impression I might give! Please believe me that I am not thinking each and every individual I am in contact with on the Internet is giving me more time than I deserve and thinking about me and reading everything I write.( I can see from my blog stats that this is not the case! 🙂 ) but I am glad and grateful that you see me as someone getting on with my life and you are not spending too long worrying about me! 😀 Thanks for the hugs. Have some in return xxx


  4. I can imagine the people around you at home struggling. You are the Rachel you’ve always been and yet now there’s this new knowledge. If people treat you differently then they did pre-A it will be wrong if they ignore it that would be wrong as well. No-one knows what it’s like to be anyone else no matter how empathic we are. I must confess that I (usually fearless about stuff) have been hesitant to comment and hope this doesn’t sound shite in any way. Bottom line is you are loved.


    • Thank you, Gilly! You don’t have to worry about commenting. I look at your beautiful blog regularly and love your photos and don’t get round to commenting. I don’t want to leave the first thing that comes into my head on people’s blogs, I want to think about it and that takes me AGES! 😀 so I often don’t. You’re on the list of people who I know care. You don’t need to keep proving it. xxx


  5. Oh and WELL DONE YOU 🙂


  6. I think honesty terrifies so many people because it is such an alien concept to them. It may bring with it constant fear, doubt and all the other problems you describe so eloquently but personally I would far rather be around people who try to connect by being truthful about their experience of the world than the ones who stay locked in the superficial. Keep being authentically you and putting your truth out into the world because it helps people like me so much xx


    • You’re right – honesty does terrify a lot of people. I’ve had plenty of evidence of that in the last few years. After my father died, people would often ask my mother how she was, so she would tell them – honestly, but they didn’t like that. It turns out they didn’t really want to know. She would keep saying to me ‘Why do they ask if they don’t want to know?’ Was she supposed to lie and say she was doing fine when she was falling apart and wanted to die?
      Thanks, again for your kind words, Carolyn. I hope you are doing okay? – and you know you can be honest! 🙂 xxx


      • So nice to know that when you ask me if I’m ok you’re really asking me if I’m ok!! I’m really not on more days than I admit to most people in my life. Honesty is so hard isn’t it because i always think people will get tired of the depressed, anxious me but I will say that every time I read something authentic that you’ve blogged it gives me just a bit more courage to speak and write the truth xx


  7. But you’re still Rachel, right? I finish my contract at the end of July so I’ll try to liven up Twitter (at least for Aug and Sep)


  8. Going to send hugs and cackles, it’s the school hols so I’ve barely given this the attention is deserves (will come back) but just wanted to say hi. For what my humble opinion’s worth, if anyone misjudges you due to a prejudice, it’s their job to self-correct, not your job to worry about it. Anyway prejudice is impossible to cater for: it could be because you have autism, or because you’re female, or because you wore lipstick (or didn’t), etc etc. Most people will just accept you as you are. You’re you, “ideal” as they say down here. (Except you’re not Cornish, so you’d still get some dodgy looks, you know.)



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