Some more about Asperger’s and how it affects me

It’s very hard to have Asperger’s when you’re a highly-intelligent person who is able to mask it (though only through incredible, exhausting, constant effort). Especially when the mask falls, when you’re unable to keep it up anymore, and people get a glimpse of your reality and don’t know what to do about it.

I write about Asperger’s a lot. But there are still some things I don’t explain about it, and I think I should. Here is some more stuff about how Asperger’s affects me. (Note: this is not a comprehensive list. I could have written three times as much. But it would have got very boring.)

Please note: Do not tell me you understand, unless you have Asperger’s or autism too. The likelihood is that you may think you do, but you really don’t. Instead, please listen and learn. In return, I will listen and learn about your life, about the things that are relevant to you. I have a hard time when people say “I do that too, and it’s normal.” Usually that means they have not understood the extent of how difficult I find these things. Instead of ‘I understand’, consider saying ‘I hear you’ or ‘I’m listening’. Thanks.

– I get very tired from ‘pretending to be normal’. 

Trying to act like a neurotypical person is exceptionally hard work. I have to think about every single word I say, every gesture, every action, every aspect of social interaction, and more. I have to calculate things like when to speak in a conversation (every time, which in even a five-minute chat can be exhausting). I have to manage my emotions to a very careful degree – they make me do things that people respond negatively to, but I don’t know what those things are or how to avoid doing them, so I spend a lot of time sitting quietly and trying to work out if I’m showing any sign of emotion or response and whether it will upset people. I often go too far the other way and talk and talk and talk, sometimes inappropriately for the situation I’m in. I don’t understand sarcasm, although I have learnt about it by rote and through a lot of negative encounters with it, so now I can sometimes recognise it – but it’s always painful. I don’t understand most metaphors or analogies, and I have to pretend that I do, even when I’m deeply confused by something that someone has said (which could be something as simple as ‘I’m so tired that I’m about to drop’ – does the person mean it literally? – figuring this stuff out can take up all my mental and emotional resources in a conversation). My tone may be inappropriate, because I don’t understand about tone and what’s wrong with the words I’ve said, or what they may communicate in the mysterious word of the non-verbal. (If you think I’m being aggressive, please ask me what I mean, rather than assuming. I probably don’t intend to be!)

– I can’t easily follow (or understand) social rules and conventions.

One of the worst things here is when someone asks ‘How are you?’ First of all, I’ll tell them, whether they really want to know or not. Secondly, I always, always forget to ask about them. Social niceties are not easy for me. It’s not that I’m not interested. I’ll ask all sorts of things about the other person when it’s relevant to what we’re really talking about. I just can’t remember the rules. I won’t ask about your day or inquire about your children’s health. Remember: it doesn’t mean I don’t care. Tell me something real about you, and I’ll be fascinated and want to know more. I just really, really have trouble with small talk. Get to the point!

Earlier this week I had a great chat with an autistic person who is doing research that overlaps a bit with mine. We didn’t start with social niceties. We dove right into the details of our work, our lives, our research. Half way through the conversation I realised I hadn’t asked the other person anything about her life, so I asked a thing. But a thing that was relevant. I still don’t know anything small-talk-ish about her – where she lives, whether she has a family, what else she does other than her research. I know the important things, the things we were there to talk about. The rest I’ll pick up at some point, if I ever need to know. (Does it really matter anyway? If it’s important enough to her, she’ll tell me. If not, we’ll keep focusing on the big stuff.)

Relatedly, you may find I don’t make sense during a conversation. This is usually because I start talking about something that I think is relevant, but other people don’t understand my thought processes. Similarly, I very regularly misunderstand the meaning of others’ speech. Again, I spend a lot of my time trying to pretend I’ve understood. Like a deaf person pretending they’ve heard so that they don’t ruin the conversation, I may just nod and smile a lot, but not have a clue what you mean. I’m trying to learn to say “Could you please rephrase that?” – but it’s hard, especially when people get frustrated with me for not understanding.

– I have cognitive difficulties.

It can be very hard for me to get people to believe this one. I don’t *seem* cognitively impaired. But I am. I have some serious memory problems (please don’t be offended if I forget your name or something you’ve told me about yourself). I also find it very hard to recognise faces, which means that if I meet you for the second time, I may forget that we’ve met before. Please excuse my constant “Have we met before?” type questions. (I’ll soon remember, when we start talking.) I also have some theory of mind difficulties, which means I spend most of my time trying to work out other people’s intentions and getting it wrong. (It is exhausting.)

– I have overloads and meltdowns.

This is one of the most difficult things about Asperger’s. Out of nowhere I can get sensory overload or emotional overload that can lead to a meltdown. (For more info about what sensory overload is, see here and here.) At which point I start looking and sounding like a child having a tantrum. I find this so embarassing, as a professional and an adult and so on, that I usually do my best to disappear and have these on my own. I never want anyone to see – it will affect my self-image and your view of me. But at the same time, I often secretly wish someone would help… :(

– Wishing I wasn’t like this affects my mental health.

I experience obsessive thoughts, especially over ‘getting things wrong’ socially or otherwise. (Spending 24 or 48 hours being able to think about only one thing, literally, is not fun. It happens a lot.) I have high anxiety, which often comes out in more obsession – I may only be able to talk about one thing for a few days, and that can seriously piss others off. (SJ knows this one well.) It can look like I’m only thinking about myself, when in fact, I just want to put my mind at rest about a thing that’s worrying me (which can be anything from that cable on the floor that someone may trip over, to a thing I need to fix but can’t yet, to the health of another person and whether they might die…) I experience a lot of depression. I sometimes self-injure. I sometimes wish I were dead.

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I share these things on my blog, not because I want attention (in fact I spend my life trying to avoid drawing attention to myself and trying to avoid people noticing I’m different), but to avoid misunderstandings. It’s the worst thing in the world when I get it wrong – when I get anything wrong – and offend, upset, frighten, confuse, irritate or frustrate someone. I don’t want to do any of things.

But at the same time, I wouldn’t want to be ‘normal’ either. I am different, and that’s good. The problem isn’t with me. It’s with the society that expects me to behave in a certain way, to fit in, and demands things from me that I can’t give – not without exhausting myself and spending my life pretending to normal. As you can imagine, the result is often intense anxiety, depression, and worse. But it shouldn’t be. I shouldn’t have learnt to hate myself for being different. I should be able to love and appreciate the beautiful variety that I contribute to in the world.

Cross-posted to my disability blog.

6 thoughts on “Some more about Asperger’s and how it affects me

  1. Thank you for sharing this, it has given me a lot to think about.
    I use metaphors a lot, almost unthinkingly, and reading about how that might affect people with Asperger’s has made me wonder whether I always need to. The effort you describe sounds tremendous, and I am grateful to you for making it here on your blog, because I have learned so much from reading your ideas. I wonder: does your experience of living with Asperger’s affect the way you understand honourable communication, from the perspective of your druidry? Because it seems to me that the amount of effort you make really shows in how well thought-through and insightful your ideas are.

    As for self-injuring and sometimes wishing you were dead – I have no idea whether or not this will help at all, but I am trying to be more open because the openness of others has helped me so much – you are not alone in this, although the intersection of autism and Asperger’s with depression and self-harm is something I know very little about and would like to learn more. I will look for your disability blog to educate myself a little more. I am trying to learn as much as I can about the invisible(ish) problems people face, because I have finally realized at the ripe old age of 31 that being high-functioning, and appearing ok to most of the people most of the time, is no substitute for being able to understand my own and others’ problems . You do contribute beautiful variety to the world, and it is very much appreciated by me.

    As a footnote: “ask me rather than assuming” should be the motto of anyone communicating on the internet!

  2. Thank you so much for sharing this. It must have taken tremendous strength and courage. I always learn something new when I read your blog and I am grateful for the time and energy you put into posting here.

  3. I will be the first to say that I do not understand what it is like to go through that much work just to get through the day with the rest of us. But I do know that it is a struggle, and I thank you so much for sharing it. Stories like yours are immensely helpful to me as a parent, in gaining some insight to my child. My son has ADHD, OCD and a number of sensory issues…its not Asperger’s or autism, but many of his behaviors and challenges are very similar. It is very frustrating and oh-so-heartbreaking as a parent to see your child struggle with something so hard, and be unable to help (and unable to really communicate about what would be helpful, since he’s only 6. I just wanted to say thank you…and I am listening.

  4. Thank you for writing this, and for sharing your point of view.
    It helped me understand some things that I was confused about and/or did not understand

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