Do you believe in Autism?

I wont lie – because I can’t – it’s been a tough few weeks. In the last  two weeks alone I’ve been accused of being unkind, a liar and someone who doesn’t take responsibility for their decisions. Those things don’t describe me in the slightest and in these precise instances are also completely untrue, and so they hurt. A lack of truth is painful to an Autist. What hurts more though, is that I’ve been accused of those things by people who, while not my closest friends, are people I’ve known for some years, who know I’m an Autist. And despite knowing that, they are still choosing to judge my actions by neurotypical standards. Now maybe they don’t have as full an understanding of Autism as I think they do. Maybe they don’t realise that if I don’t do something in a timescale that’s socially acceptable to them I’m not being unkind, I just sometimes only have the capacity to keep the family fed and functioning and nothing else. Maybe they don’t realise that if I say something it’s not going to be a lie, because that’s not something I can do easily, if at all, and that if I make a decision I’m incapable of not taking responsibility for it – because that’s just another kind of lie, and I can’t do that.

Or maybe, they just don’t really believe in Autism. Maybe they think I’m just making it up to ‘get away’ with ‘bad’ behaviour – because I’m too lazy or selfish to do anything else and I don’t care about anyone but myself. Maybe

You see, while as an Autist I can’t accurately predict what people are thinking or what people feel, I do often get the sense from overheard conversations, from discussions with other Autists, from the ‘who does she think she is?’ attitude I occasionally come across, that many people don’t really believe in Autism.

Sometimes people even get annoyed that I won’t accept their definition of me. They tell me I need to own the fact that I’m outspoken and ‘don’t suffer fools gladly’ and don’t really care what anyone else thinks. That it’s okay to be like that. And if those things were true, I would own them, I would accept that it was okay to be like that. But they’re not true. I care deeply about people and I go out of my way to be as kind and sensitive as I can. Those definitions are assumptions made by neurotypicals judging my actions on their terms i.e. judging me as if I had an awareness of the social niceties I was transgressing and didn’t care and did it anyway.

Don’t get me wrong, there are some Autists who have embraced that neurotypical description and are happy to own those things – which is fortunate because they don’t have a choice over them – but I’ve yet to meet an Autist who didn’t feel deeply, so even then I wonder if they’ve done that simply to have a definition of themselves that makes sense, in a world that doesn’t. Either way, for those of us whose personalities don’t match the neurotypical interpretation of our actions, every day is uniquely painful. Our only relief is spending time with other autists, or those glorious and rare neurotypicals who have somehow ditched all the ‘shoulds’, who really listen and accept people as they are. I’m lucky to have many of those in my life right now and I cherish them.

However, the negative attitudes I’ve described seem fairly widespread throughout the neurotypical population (from my own experience and that of many autists I’ve spoken to) and so that leads me to question how many people – even people who know Autists well – really believe in Autism. How many actually believe in the day to day reality of being an Autist in a world where it’s estimated that 99% of people aren’t. How many people actually believe that every day is a struggle to fit into a neurotypical world that makes little logical sense to us, that every day is exhausting, that the sensory input of just existing can leave us unable to function in any useful way.

I believe that if the attitudes of those who don’t really believe in Autism are ever to change, then we have to start questioning them and challenging them. We have to start by asking other Autists and Autist allies in the hope that doing so will bring us to a deeper understanding, so we can reach those who don’t yet understand. So for my part, I have to start by asking you, and asking you to ask others this…

Do you believe in Autism?

Do you think when I do something that comes across as arrogant or rude that that’s just what I’m being? Or do you stop and consider that to me what I’m saying or doing is neither of those things, so I’m totally unaware of that impact on you until you tell me? Do you accept that Autists are not consciously insensitive in the way it might seem to you, that our brains are connected differently – and that because of that we are better at some things than you, but the cost is we are worse at social nuance? Do you accept that we come across that way not because we don’t care about your feelings but because we are physically incapable of knowing your feelings unless you tell us? Will you take responsibility for that?

Do you believe in Autism?

If something you say or do upsets me, do you reconsider what you’ve said or done when I talk to you about it? Or do you think I’m just being highly strung or oversensitive? Do you accept that my reaction may be because I’m an Autist and I perceive the world differently to you and make accommodation for that? Or do you expect me to just live with it and that your perception of the world is the ‘correct’ one because that perception is the majority one? Do you think that if you do something that upsets an Autist it’s their problem, at the same time believing that if they do something that upsets you it’s also their problem – just because there are less of us? Do you still think Autism is an illness (that could or should be ‘cured’ by making our brains function the way neurotypical ones do) rather than a difference that should be accepted and even celebrated?

Do you believe in Autism?

If you’ve ever seen or heard me in meltdown, when it seems like I’m ranting or swearing too much and I don’t seem in control, do you think I’m just throwing a ‘diva strop’? Or do you accept that when there is too much sensory, emotional or informational input for me, that this is simply what happens to me? Do you accommodate and stop giving me anything extra to deal with and let me get through it? Or do you fuel the fire with judgement, blame or ridicule. When I flip into shutdown because of that overload, when I can’t speak at all, or only very labouredly and sometimes can’t move, are you patient? Do you let me rest? Or do you fuel that cold fire with disapproving looks, tutting, making it about you, telling me to pull myself together or that I’m being unreasonable? If you’ve never seen my meltdowns or shutdowns and I talk about them do you think I’m just making it up? Do you listen and try to understand, or do you think I’m just saying it to get attention and it’s not really as bad as I say, because I ‘seem normal’ to you?

Do you believe in Autism?

Do you understand that what is polite and kind to you may be rude to us and vice versa? Do you understand that if you say ‘how are you?’ not answering that honestly is painful to me – even though I know the response ‘should’ be ‘I’m fine how are you?’? Do you understand that when you expect me to engage in small talk before getting to the point of what we’re talking about, I find that almost intolerable, but I try, for you? Do you understand that while a neurotypical brain likes facts to be cushioned an Autist brain needs clarity and directness? Do you understand that while your natural inclination is to show care for another person by social niceties like ‘hello’ and ‘how are you’, our natural inclination is to show care by not taking up their time with things that are irrelevant so they can get on with everything else they want to do? Do you expect us to change the way we behave to your natural inclinations, but refuse to change for ours? And if so why? Just because there are less of us?

Do you believe in Autism?

Do you only believe in the non-verbal autists, the ones with the more ‘extreme’ behaviours the more obvious stims? Do you consider that presentation ‘real’ autism and everyone else is just ‘making a fuss’? Do you consider those Autists ‘more’ autistic? Do you understand they are only ‘more’ autistic in that more of their differences present themselves to you? Do you accept that all Autists struggle in a way that you may never understand or see? Do you fully grasp that the autistic spectrum is not a line with high functioning at one end and low functioning at the other, it genuinely is a ‘Royal Circle’, a two dimensional flat shape, or maybe even a sphere, that we are all at different points on? Do you understand that non-verbal does not mean non-thinking – or non-hearing? Do you understand how hurtful it can be to call someone low functioning or high functioning? Do you understand that maybe the reason some autists are non-verbal is the same as when verbal Autists become non-verbal in shut down – i.e. the sensory input is so massive, the connections being made are so great that other functions shut down? Can you see that if that’s the case they are not low functioning, but vibrating at a whole different level of awareness and what marvels we might discover if only we could communicate?

Do you believe in Autism?

Do you see that so much of the ‘support’ for Autists is about making it our responsibility? That it is our responsibility when we don’t follow the social rules that neurotypicals innately know, and also our responsibility that some things neurotypicals do really upset us? Do you ever question why? If you accept that Autism is a difference, not an illness, then why should we be the ones who have to make all the accommodations? Why do we have to change and no one else does? Is it simply because there are less of us? Does that sound right to you? What would that sound like if it were it applied to a different kind of minority?

Do you believe in Autism?

 

Thank you for taking the time to read all of this. Below is a link to a song I wrote about my experience of being an Autist. If you can take its message to heart, or you can share it or this blog with someone else who then does, you will have made the life of this Autist and many others an easier place to be. So please do. Thank you.

The song is called Oblivious

 

Footnote: In a previous version of this post, before I’d started the work on rooting out my internalised ableism, I had claimed that autism wasn’t a disability.  I apologise for that and for anyone that was upset by it. Since then, I’ve listened to disability advocates, learnt better and have now taken those references out. Autism IS a disability in itself, we are dis-abled by living in a world that doesn’t work for the way we are, where neurotypicals are en-abled by it – and many autists are also disabled by the co-occurring conditions that many of us have. Disability is not a bad thing, its not a dirty word, it doesn’t make us lesser, it’s just a fact of many humans existence, and all those humans are just as valid as the non-disabled. 

Author: royalcircleofautism

Single mum of three kids blogging about our life as autists on the glorious spectrum that the middle kid renamed The Royal Circle of Autism

One thought on “Do you believe in Autism?”

  1. As always, lucid, thoughtful, thought-provoking and educational to a caring and sensitive (I hope) neurotypical like me. Thank you Justine x

    Like

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