Summer read: A little understanding – and awareness of a few simple, easy-to-follow rules – can make a huge difference to our lives, Autistic advocate Rory McCarthy writes.
First published on April 16, 2021
Autistic people have difficult lives: a lot of things that seem trivial or a sign of over-sensitivity to allistic (non-Autistic people) actually affect us quite significantly. There are a number of simple things everyone can do to improve the lives of Autistic people, though some of these might only be applicable to a subset of Autistic people – because while we share traits, no two Autistic people have had the same life experience. Here are about some things that would help us, taken from my own experience and that of other Autistic people. The theme running through all 10 of these suggestions is simple: listen to us.
Assume competence always
Autistic people, like every other person, have varied intelligence. One of my biggest grievances is when people assume I am being “stupid” because of my Autism. In class I used to ask a lot of “stupid questions”, and the response I got meant eventually I just stopped asking questions altogether, or I became the class clown because at least when people were laughing at me it was better than being mocked. I was always competent; my brain just works differently to decode information.
Give clear and specific instructions
When getting instructions at work, I often need to ask many questions as things are often not initially clear to me. I do not know how to do the work that is expected of me if I am not sure of what you actually need. If my questions are dismissed, I end up with massive anxiety as I’m left not knowing how to proceed. I am extremely efficient at working once I know what is expected of me.
If you do not know the answer to my question, just tell me “I don’t know”, because then I can make a suggestion.
If you have a specific thing you need done, don’t ask a question that can be logically answered with “yes”. An example of this:
“Can you help more please?” – Allistic person who needs the dishes done.
“Yes” – Autistic person with every intention of helping more.
Allistic person: “Why haven’t you done the dishes like I asked?”
There’s a disconnect here between what you asked, and what you meant. I think it would be better for everyone, not just Autistic people, if people tried to make their requests more explicitly clear.
Don’t shame us for using ‘big words’
A lot of Autistic people have a keen interest in books, words and definitions, and having an advanced reading level is commonplace. When we use words in conversation that are “too big” or seem like we are trying to exclude people or “sound smart”, often we are just using the word we know fits best for the specific thing we are trying to talk about. You can ask us what the word means, or to specify. But never assume we are doing this to sound smart – we are simply using the language we know.
Listen to us when we say something is affecting our senses
Autistic people tend to have high sensory processing abilities – we hear more acutely, see things more brightly, feel things with more sensitivity, smell things more significantly, and taste things that often others do not. These sensory issues we have can actually cause us pain in a lot of circumstances. When we tell people that things are upsetting us please do not tell us we are being “too sensitive”. We are too sensitive, it’s not something we can turn off. The accommodations we are asking for are usually minor in the scheme of things. The constant denial of these things can have serious consequences – I know, I’ve been left untreated for significant injuries as I was accused of being a “hypochondriac”. I broke my arm and was told to have a cup of soup and a bath. I broke my collarbone and it reset in the wrong place. I spent a year being denied care or disbelieved by my doctor when I had Crohn’s disease. Now I don’t feel pain when I should.
Know that we often do want to socialise
One of the most persistent myths is that Autistic people prefer to be alone. That’s not true in a lot of cases. While we do need some time to recharge, it’s also a fact that in respectful company and the right environment we can often socialise at length. Sometimes we are happy to observe others socialising but not want to talk much ourselves. Small talk isn’t very interesting to us, as we like to talk about keen areas of interest, but keep in mind we often have interest in a broad range of topics. If you don’t want to talk about the specific thing I am discussing, you can ask me what else I’ve been recently interested in.
Answer us honestly when we ask ‘Is something wrong?’
If we’ve done something wrong that you think should be obvious to us, a lot of the time we will not know what that is. Social rules for allistic people are not clear or explicit, and often change depending on the situation. If we don’t know what we did wrong there’s a high chance we will repeat doing it and hurt people. Those of us with hyper empathy (a common trait among Autistic people) can sense when others are in pain, hurt, aggrieved or otherwise upset with us. When you tell me ‘You should know’ or ‘I’m fine’ and you clearly are not, I get confused, and will not understand because your emotions that I am feeling also do not line up with what you are telling me. So instead I blame myself for being horrible and want to withdraw.
Be aware that interrupting us has a significant effect
Anytime you interrupt me when I am doing something that I am focused on, it can often take a long time to resume doing that task. I will always be frustrated due to this, and I have to suppress the anger or frustration because I don’t want to hurt other people. The problem is that task switching for me is incredibly difficult. I have to work in a consistent order, and when that process is interrupted, getting back to the chain of thought that led me to where I was is often like searching in the dark. Even if there are prompts, it can be hard or nearly impossible to resume the task quickly. Having been interrupted, I now want to do the task you interrupted me about – not the task I was doing before.
Understand a lot of us have rejection sensitivity from repeated trauma
Sometimes we appear to blow up over tiny negative things you say about us, or we can sometimes incorrectly infer that you meant to hurt us when you were giving us feedback. This can manifest as anger, or it can be internalised, leaving us extremely sad and sometimes even suicidal. It’s really important to let us know that you don’t hate us when we make a mistake. Because we’ve often been abandoned by friends, family, co-workers, and others, we don’t have great coping mechanisms for negative emotions. Always critique the action, not us as people.
Ban applied behaviour analysis (ABA) therapy or other therapies that try to make us neurotypical
Any specific training that tries to make us not Autistic ends up doing significant damage to us. It’s the same principle as conversion therapy for LGBTQIA+ people. A lot of people are now speaking up about the extreme trauma they have from being trained out of being Autistic. I never had ABA; I had ‘bullying behaviour analysis’ – and I ended up hating myself, even before I knew I was Autistic, as I tried and failed to be more allistic. It’s taken me 37 years to actually accept myself, and to like who I am. Because I was told not to trust myself and to just be someone else, I often discounted my own discomfort which led me to be trapped in some abusive situations for a long time.
Realise that if you are a ‘highly sensitive person’, you’re probably Autistic
Because of all the stigma around Autistic people, and the false science that says we can’t think as others do, or have empathy, a large number of people who are Autistic don’t realise it. If you feel like you feel other people’s emotions, find social situations draining but still like to participate in them, consider yourself highly introverted but with a deep interest in nature, books, art, or specific subject areas, you might be Autistic – but your ableist understanding and the bad science that exists about Autism makes you think you are not. You should know if you are Autistic; everyone should. I only found out because I had a “mental breakdown” which was actually Autistic burnout. It was a bad way to find out, and a result that for many people can come far too late.
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