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Thanks to recent events, this is a question that I know is going to come up a lot. Curiously, if I reverse it and ask what do you think autism is, I get the same answer every time. It usually sums up as this:

It’s an inability to communicate properly and recognise what other people are thinking.

And maybe I’m a bit slow on the uptake, because it’s only in the last few days that I’ve realised that the majority of neurotypicals define autism as the impact it has on them. When I finally admitted my diagnosis to my mother the email that came back blamed me because ‘I don’t communicate properly’ and therefore the difficulties I have are my own fault. (Which on one level is true, but I did wonder if a paraplegic would be blamed in the same way for their inability to get up a flight of stairs.)

When I think about the day-to-day realities of living autistic, communication issues are not top of the list. And even if they were, they should be the easiest to solve, simply by NTs allowing me the space and time I need to understand or get my point across. And yet this is constantly held up as an autistic’s biggest problem, their major failing.

So I’d like to list a few things that NTs don’t seem to ever comprehend.

Being autistic is…

– sitting at work trying to calculate when the next person will grab my arm or pat me on the back, so I can control the resulting nausea and distress and not lash out. Wanting the comfort of physical contact, just like any NT, and knowing when it happens it will be deeply unpleasant and that no one will understand it, in fact, most people will deny that I experience it this way.

– standing in line at the cinema surrounded by dozens of people all yelling and shoving past me, trying to block out the multiple advertising screens that are flashing different trailers with associated soundtracks, (despite which there is also background music playing) and hoping I don’t see anyone I know because carrying on a conversation in this will bring me to meltdown. (repeat for cafes, bars, airports, train stations where mass proliferation of flatscreens ramps up the sensory overload to an intolerable level.

– waking up each morning to the disappointing discovery that I’m not dead, as I seem to be one of the 30% of adult autistics with near-constant suicidal ideation. Knowing that the rest of my life will be simply putting one foot in front of the other while consistently falling short of other people’s expectations.

– wondering every time I change jobs or someone new starts at work if they will see my awkwardness as an opportunity for bullying, and knowing if they do then it will be written off as a ‘personality clash’, if not outright blamed on me.

– being unable to address serious health issues because my anxiety and overload can peak for months, and there is no way I can let someone touch or examine me.

– constantly losing money because of executive dysfunction issues

– sleeping for 24 hours after a major meltdown

– being labelled as self-harming because I use scratching my arm as an alternative to banging my head against the wall when in meltdown.

– having to sit silent as people who know I am autistic use the word to refer to anyone who is getting in their way and annoying them. Having to sit silent as people who don’t know I’m autistic use the word as a generic insult.

– reading that people in the US think people like me should be locked up as we are all potential mass-murderers. Reading that scientists think research on people like me should be excluded from ethical oversight because we are not fully human and any experiment that might make us human is therefore justified.

– having to spend a lot of time indoors because the constant rush of sound, light and movement outside is hard to process.

– losing my autonomy thanks to people who rush to tell me that there are things I can’t possibly understand so why bother making the effort to explain it.

– being told that counselling/therapy is pointless because I don’t actually have feelings, I just have a computer brain with faulty subroutines and so the only thing worth doing is CBT, because that will ‘correct me’.

– constantly second-guessing my every action and analysing how autistic it is. Constantly trying to hold back from talking to people outside of work because I’m more likely to say something wrong.

– worrying that my interests are actually obsessions and therefore invalid from a normal person’s perspective

– dividing the world into ‘normal’ and ‘me’