The fine line between positive autistic activism and abuse enablement
There is an internal war raging inside my head.
Over the last five days I’ve received a much larger amount of feedback about my autism related writing than I normally would and among the emails, comment threads and conversations, there is one common theme.
Why don’t you write something positive about your autism?
And it’s tearing me apart.
This is coming from strangers, friends, colleagues, family and professional contacts whom I respect. Non-autistics and autistics. It’s coming from a wide variety of sources and it’s coming in loud and clear.
On one hand I agree with them but on the other I feel quite angry because I feel like it isn’t completely fair. It’s twisting me up inside and pushing me to the edge and then pulling me back at the last second.
This piece is not designed to defend or retaliate. This is me working something out on a page. The feedback that I have received is valuable and has mostly come from people I care about. The strangers that have taken the time to contact me also clearly care otherwise why did they bother giving me their time?
I used to write positive articles. I used to be the friendly-faced autistic handing out an abundance of carrots and smiling politely when I was publicly mocked or torn to shreds by people who told me I wasn’t worth listening to because I’m not one of the more ‘famous’ autistic speakers and writers out there. It didn’t matter how positive my articles and talks were.
I’ve been bullied and abused for as long as I can remember — it started long before I was diagnosed. Throughout my entire life, I’ve never been enough. I’ve never been good enough. I’ve never been worthy of respect. My social and sensory differences have always been a problem. I’ve always been a problem. I spent 30 years thinking I was a monster and when I found out that I just had a different brain, I felt like a massive weight had been lifted. That maybe, just maybe, it would be OK for me to just be. To just be myself and finally at the very least — to have my choices and needs respected. Not necessarily agreed with — but respected.
That didn’t happen. The abuse continued. It just pivoted.
While I was no longer viewed as an anti-social monster, I became someone with an invisible disability that people laugh at and complain about. People expected me to ‘fix’ my differences and stop being so annoying. I was still a problem. Just a different kind of problem. The context had shifted, but I was still being abused and bullied for still not fitting into the social norm.
It turned out that being an autistic person who wanted the freedom to just be herself was just as bad as being an undiagnosed autistic mistaken for a ‘bad person’.
Nothing has changed in my world. If anything my life has gotten a lot harder. Life was easier when everyone just thought I was ‘mean’, ‘rude’ and ‘difficult’.
For those who don’t know, me being given the freedom to just be myself isn’t something that would cause harm to other people.
It’s about me being safe to leave an event after the main activities have concluded without harassment or judgement because I’m exhausted from the mental effort required to survive that much social interaction.
It’s about me being given some extra mental space and not being required to respond immediately. Me needing a moment to pause shouldn’t be taken as hesitation or a sign that I’m ‘buying time’ to come up with a good excuse to say no. I’m just processing. My brain just needs a moment to figure out how all the pieces will slot together if something were to move.
It’s about me being free to say ‘no’. No, I’m not comfortable in this environment. No, I don’t agree with you because of XYZ. No, I don’t want to eat that particular type of food for lunch because I don’t like it.
It’s about me being safe to ask clarifying questions when I need to and not be expected to instantly be able to ‘read between the lines’. I can’t. I think in a very literal way and while I do have excellent analysis skills, there’s never enough to go on and there’s far too many possibilities to zero in on just one. I’m very precise and I don’t make assumptions that would potentially exclude other possibilities. I make decisions based on evidence and I need direct communication. I understand that doesn’t come naturally to neurotypical people who view directness as synonymous with rudeness but when you soften and pad out your communication, you introduce ambiguity that I can’t get my head around in the time that you need me to.
It’s about me and my actions being taken at face value and not viewed through a neurotypical lens. Something that is completely ‘normal’ for me to be doing might be considered highly unusual when compared to the actions of a person who is not autistic. I’ve found that non-autistic people often have trouble understanding me and my actions because they try to relate through their neurotypical perspective. You have to look outside it and recognise that my brain is running on a completely different operating system. If you’re not sure what’s going on, it’s OK to just ask me.
It’s about me being forgiven and given a little bit of rope during social interactions. I really struggle to follow the flow of a conversation and I don’t always know when it’s my turn to talk. This is further compounded by issues I have with short term memory. If I think of something to say and too much time passes before I get a chance to verbalise it, I will forget it. I hold onto it for as long as I can while I try to decipher the next break in the conversation but sometimes I get it wrong. Sometimes I blurt my thoughts out too quickly because I’m afraid I will lose track of them. When this happens, I come across as a rude person who talks over other people but that’s just not true. The people who know me, know that they can just say ‘Hey, I’d like to come back to what I was saying about X’ and it’s fine. Given enough time and exposure, I can learn a person’s conversation patterns but I need forgiveness and support while I do that.
It’s about me not being judged for experiencing anxiety or sensory overload. It shouldn’t be OK for people to snap at me to ‘calm down’. I should be believed when I tell someone that the lights are too bright or that I need a little break from all the noise and not just be told to put up with it ‘like everyone else’ does.
If I write a positive or friendly article, I am absolutely terrified that you’ll think it’s OK to keep on abusing me.
To keep on harassing and bullying me. To keep on making the unrealistic demand that I ‘fix’ my neurological disability because you can’t see it or because of a mild inconvenience that you’ve experienced while interacting with me.
That you’ll continue to marginalise me and tell me that my experiences are ‘nothing’ and that ‘everyone’ has to put up with things like that. That you’ll continue to view my differences as an indicator of low intelligence, poor performance or immaturity. That you’ll continue to take advantage of me and see these carrots as an opportunity to get more carrots while giving nothing in return.
All I want is equality. I just want to be met halfway.
I want to live in a world where it’s safe for everyone to be who they are — and that world needs to include me. The real me. Not the me that’s desperately masking her differences and trying to say and do the right thing so you won’t hurt me.
The me who is good at solving challenging puzzles and naturally thinks twenty moves ahead. The me who has a knack for stringing random scraps of information together to form accurate conclusions whether it’s through my work as a user researcher, when observing changes in those around me or when I’m unpacking the plot of my favourite TV series. The me who has this neat trick that allows me to solve other people’s challenges and dilemmas without thinking directly about them. No joke, my subconscious processing game is powerful. Within hours or even minutes, I’ve got an idea that can help someone else get unstuck without having consciously given it thought. The me who loves learning new languages, can play six different musical instruments and is very good at rendering by hand with coloured pencils.
I can’t do any of these things when my brain is preoccupied processing the latest bout of abuse, bullying and harassment. I can’t be the best version of me when I’m trying to figure out what you mean or why you’re talking to me the way you are. Or when I’m trying to understand what I’ve done wrong this time or when I’m being beaten down for failing at small talk — again. Or when I’m too quiet or not quiet enough.
I hear you when you say you want more positivity from me. But hear me when I tell you that my life is complicated. I live in a world where being socially unacceptable is one of the worst things a person can be. There’s a whole lot more shade than light and I firmly believe in authenticity. I won’t gloss over the darkness and I won’t stop calling out the bullshit. I won’t stop fighting for equality.
But maybe I can show you a little bit more of the sunshine. It won’t be sugar-coated — it will definitely be in my usual authentic style because I won’t pretend to be someone else anymore. I did that for 30 years and it nearly killed me — three times.
Maybe we can find that fine line together. The one that sits perfectly between selling the benefits and selling out. The one that says ‘I’m awesome just the way I am and I really wish you could see it’.
People don’t respond or change their behaviour when you feed them carrots all the time but maybe I’ve been giving out too many sticks lately. There needs to be a genuine balance between carrots and effective sticks. I’m not here to tear you down or lecture you, but I do want you to listen, learn and stop hurting me.
Instead of viewing autistic people as a problem to be fixed or a stray hair needing to be smoothed down to join the rest, I’d like you to consider viewing autistics as another example of acceptable difference and meet me in the middle. Maybe this way we can affect some real change and build that world that is genuinely inclusive of all differences.