This is my latest vlog, about hurt, meltdowns, acceptance and being kinder to one another…
I know it’s been a while. I’ve been busy with so many things, and my journey with my understanding and experience of Autism is ever evolving. There’s so much I have to write about, but today I want to talk about the thing I’ve been avoiding. Buckle up and strap in, we’re going to be here a while…
I want to talk about meltdowns. Except I don’t. Because talking about them – the actual reality of them – scares the life out of me. It scares me so much that for most of my adulthood I’ve kept the fact that I have them hidden, because I thought people would think I was crazy and lock me up or take my kids away. But I’m going to talk about them, because that fear is irrational, and I believe in facing those kinds of fears head on. And because maybe if I can explain them and more people can understand and then show compassion and support to Autists experiencing them (rather than confusion, avoidance or worse, judgement) then maybe life will become a bit easier not just for me but for the many other Autists like me for whom these are a day to day reality.
So… what’s a meltdown?
If you’re new to all this, then I guess the easiest way to explain meltdowns is to say that they are what happen when an Autist becomes overwhelmed by sensory, intellectual or emotional input. They look a lot like what you might call tantrums from the outside, or they can flip over into shutdowns, and then they may look a bit like sulking. So, when you experience them as a fully functioning adult you can imagine they are both embarrassing and frightening. Of course, in reality they are neither a tantrum nor a sulk. What they are is a loss of cognitive control because the brain is trying to process too much in one go and so something has to give. As Autists we experience everything in our environment fully, all of the time – there is little to no ‘backgrounding’, we notice and process everything presented to our brains and our senses. So when there’s a lot going on you can see how that could cause problems as there’s only so much the brain can take. Imagine a machine with all the cogs whirring so fast that the machine overheats, stops functioning and sparks fly out – it’s like that.
The fear I felt of people finding out about my meltdowns meant that when I used to go for regular counselling for a few years, I barely mentioned them at all. How could I explain this seemingly uncontrollable rage that boiled up inside me for no discernible reason I could fathom at the time – other than things just seemed to much? Or these sudden shut downs of ability to speak, move, think, function again, almost out of nowhere? One of the great reliefs of discovering I was autistic meant that these things now made sense, so I could start to talk about them – there was a word for them and a reason for them happening, and it wasn’t that I was a crazy person or a terrible mother.
Growing up melting down…
I’ve never not had meltdowns. When I was a kid my parents used to call it ‘having the dramatics’. Which incidentally I’ve always thought fuelled my childhood dreams of becoming a performer – so maybe my whole career is the unintended consequence of that regular put down! My parents just thought it was because I was clever and therefore ‘highly strung’ and told me in so many words that I should stop being a diva and ‘snap out of it.’ Looking back, it’s odd how many of the things I experienced as a child that now seem obviously autistic were dismissed in that way.
I remember in sixth form once ending up screaming and rocking under a table, presumably in response to the pressure of friendships, exams, relationships, work and whatever was going on sensorily. I have no idea where the teachers were. Once again this was treated by friends as me just being over dramatic. Similar things happened at University when there were big nights out with all the sensory input that entails and I was dealing with relationships breaking down – emotional overwhelm remains one of the key triggers for me. To me it seemed as if because I was so high achieving no one wanted to admit that there could be anything actually wrong that I might need help with. I guess it just didn’t fit with what they believed a high achieving person must be like.
In relationships I have been physically beaten because of my autism – either because of my meltdowns or my lack of understanding of social norms. Family members even suggested that that might have been what I needed to learn to control myself. I was once dragged across the floor at five months pregnant during a shut down because I ‘must be putting it on’. Clearly the people doing and saying these things to me were being particularly cruel, which there is no excuse for even if you don’t understand someone, but I think even people who are usually kind struggle to believe what I tell them I experience, because it’s so far removed from their own experience.
The impact of disbelief
Not being fully believed is really one of the hardest things about meltdowns and shutdowns – and can in itself elongate them. In fact, not being believed is one of the hardest things about anything I might say about my experience of being an Autist. I do understand how it might be hard to see how the intelligent, articulate, fun (on a good day!) human being who seems sane, kind and sensible could also be someone was screaming blue murder at her children that morning, having been pushed over the edge by any one of myriad of overwhelming things that face a single mother of three autistic kids every day. I do understand how it can be hard to see how I can be chatting away to you one minute and then say or do something totally insensitive or socially inappropriate and not know I’ve done it. And some people just can’t get past that, they can’t understand how those things can all be equally true of the same person, and so if I do mention struggling with these things and they haven’t experienced them people can think I’m exaggerating at best and making it up entirely at worst. And I do get that because understanding Autism requires people to think way outside the box of their own human experience and believe things that don’t seem to make immediate sense – and that’s scary, because suddenly there are humans that don’t fit into your understanding of ‘how people are’. Welcome to our world. We struggle to predict human behaviour at all, ever, so that’s how challenging human interaction is for us, all the time.
If people do believe that these meltdowns or shutdowns happen to me, or get close enough to me to experience them, then it seems the thing they find hardest to believe is that these are not things I can help. Some people think they must be happening because I haven’t tried everything I could try. There is an assumption amongst many neurotypicals that if you’re clever, resourceful and articulate – and you want to enough – then you can control the way your brain functions. A friend once actually said to me ‘It’s your brain, you can control it’ and I thought ‘I’m happy for you that that’s your experience, but its not mine’ – god knows I have tried.
It’s hugely frustrating when well meaning people talk to you about how if you just thought about it differently, or just tried this great thing that worked for them then this wouldn’t happen. Without bothering to actually ask my experience, they assume everyone’s brain functions the way theirs does. They carry on as if I haven’t spent most of my adult life exploring every possible kind of personal development process going and I’ve just been drifting through life in a daze just letting all this shit happen to me and never trying to do anything about it. I feel like screaming at such people I’m not stupid, lazy, or naïve – I’m Autistic!! It’s a great irony that the denial of the reality of meltdowns can trigger one.
The illusion of control
The thing is, the more I understand about the neurodiverse experience – not just Autism but other neurodiversities – the more I see that we cannot control the parts of our brain that neurotypicals can, no matter how much we might want to. It’s like trying to tame a wild horse most of the time and you usually can’t hold it for long if at all. Insisting that we can is like someone saying to you that if you can hold your breath for a short time why can’t you hold it for ever? – and that you could if you really wanted to.
Don’t get me wrong, I’m not saying neurodiverse people are helpless – we are incredibly resourceful – we have to be! It’s just that what we have to do is alter the circumstances around us as best we can to reduce the triggers and input that lead to the situations where our wild, untameable brains can cause problems. However, some of us aren’t in such controllable circumstances – all the intelligence and resourcefulness in the world is not going to stop the life of a single working mother of three Autists with little support being regularly overwhelming sensorily, intellectually and emotionally, no matter how hard I try.
(As an aside, I believe there are probably things that neurotypicals can’t control in their brains that we can – but they aren’t things to do with inhibitory control or social understanding, so they don’t impact on how they interact with other people, so go unnoticed in most situations.)
Coping and the Cup of Overwhelm
People say to me all the time ‘I don’t know how you cope’ and the truth is I don’t. I don’t think this is what coping looks like. I don’t want to be screaming like a banshee one minute and crying in a heap the next, but the reality of my life is that it is virtually impossible to avoid the overwhelm that leads to meltdowns. All the advice out there to minimise meltdowns or deal with them when they occur is about taking a break from things, getting enough rest, doing things that nourish you – but how exactly are you supposed to do that when you’re solely responsible for three kids 24/7? How can you ‘step away’ in the middle of a school run and there’s no one to take over? How can you get enough rest when the little childfree time you can afford to pay for is only enough time to do the basics to keep you all fed and sheltered? The real complete rest and break that I need is just not an option for me. That would take a level of family support that I just don’t have, and while my awesome friends do their best when they can, they all have busy lives and their own families to take care of.
You see it’s like having a cup that gets filled up with a liquid made up of demands, emotions, sensory input etc. I don’t choose for those things to have that impact on me and my attitude towards them doesn’t change how much they fill the cup, it’s just how it is because of fully experiencing everything all the time as I mentioned earlier. And I’ll be fine, completely fine, until the cup gets to the top – and the lack of interoception (what’s going on inside me) that Autists experience means I may not even notice the cup is full.
I’m constantly making choices to try to control the level of that cup. I arrange Autistbro and Princess Aut’s childcare so I’m not doing pick up and drop offs at the same time as everyone else (you can just imagine the overwhelm on all fronts of standing in a playground full of people) which helps me function better the rest of the day. I put on ear defenders when I’m doing housework because not having to process all the minutiae of sound around the house means I’m less tired by the end of it. I’m often weighing up which is the lesser of two evils in terms of what will add to the cup – tidy and clear the house when I’m exhausted at the end of the day and risk overtiredness tipping me over, or wait until the morning when I may be more rested but morning routine stuff will be adding to the overwhelm? Do the washing up myself and risk that sensory input will send me over the edge and then not be able to deal with anything the kids need or ask Aspieboy to do it and risk that it might trigger his meltdown but I might be better able to support him with that because I’ll be rested?
The trouble is that no matter how hard I try, no matter how many good choices or decisions I make, the reality is that when you’re on your own with three kids – autistic or not – on top of all the usual stuff life can throw at you – you cannot control when the Cup of Overwhelm will suddenly go from three quarters full to overflowing. Like any parent, without warning I can suddenly have to deal with someone having lost something they need urgently, someone hurting themselves or someone else, someone doing something annoying, some work issue, a spillage, something breaking etc. etc. etc. Now with three kids multiply that by at least three, with being a single parent half the number of people dealing with it, and then you know, add a myriad of other possibilities because they’re Autist, and then add my Autism that means I’m fully experiencing and processing all of it. So, while each individual thing which might be tiny itself, its not hard to see how they can quickly fill up the cup to the point it’s overflowing when seconds before everything seemed fine. But once that liquid is over the edge I’m in meltdown, apparently out of nowhere, and I’m either screaming and shouting – my neighbours must hate me – or I go into shutdown and can barely move or talk if at all.
In the fire…
Once a meltdown or shutdown has started you just have to ride it out until it’s done – if I try to keep it in, or someone tries to reason with me that’s just extra input to the cup and so just makes the meltdown worse or longer. It can take anything from minutes to hours – if I can get away alone to a darkened room it’s more likely to be minutes. Inevitably though, meltdowns happen at times of greatest busy-ness because we’re in the middle of something – hence the overload – so invariably a quiet darkened room isn’t even close to being an option. The longer a meltdown goes on the more likely it is to switch into a shutdown where I can barely move or speak again for minutes or hours depending on how much gets added to the cup as I’m going through it. I guess that’s the body/brain’s way of protecting itself and trying to heal.
Afterwards, I just have to make my apologies and everyone has to help pick up the pieces practically and metaphorically and get back on with our lives. It is not, by any stretch of the imagination, an easy life for any of us. At least witnessing my meltdowns my children know that when they experience their own they have a parent who really understands and will forgive any hurt they cause and support them in trying to manage them. Experiencing my meltdowns has also taught them to be compassionate, forgiving, understanding, self-managing and resourceful. Obviously as a mum, I’d rather they didn’t have to have these experiences to learn these things, but this is the reality of living in our Autist household.
So what now…
So, there it is, the fear of talking about what for me is the most challenging facet of Autism I face. I hope that now you have a better sense of what life can really be like for those Autists you might know or come across who you might consider ‘high functioning’. I hope that if you ever experience an Autist – adult or child – having a meltdown you’ll be able to look around you and see the full picture of what they’re experiencing and not think are crazy. I hope that if you ever come across an Autist mum screaming and yelling in the middle of a meltdown then you’ll be compassionate and not think that they’re a bad mother or that they don’t really love and care for their kids. I hope that you’ll see those Autists are just trying to do their best in incredibly difficult circumstances. Maybe you’ll even find it in you to help them reduce that overwhelm. Because if you can, you could be helping that Autist achieve the amazing things that Autists are capable of when given that kind of support.
These wild, untameable brains are capable of marvellous things that can bring such huge benefits to the complex and challenging world we all live in if given the chance. If we just have the opportunity our unique brains are able to see things in such detail and from such a completely different perspective that we can sometimes solve the seemingly unsolvable. And sometimes the only support we need to do that is for someone to care enough to walk beside us through the very real challenges we face just existing in this complex world. If someone can just help us find the space and peace we need for these brains to function fully…. well then, the possibilities for everyone just might be spectacular. I wish for us all to have the courage and compassion to find out.
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 fairy 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 a disability or 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, not a disability 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
Last night, over on the facebook page, I shared a meme that aimed to dispel the myth that ‘Everyone’s a little bit autistic’, something I talked about briefly in my first blog. There are various memes about this from various different Autist’s pages, and I always share them because, in my experience, as I’ve said before, people mostly mean well when they say that, and so are confused by the negative impact that it has. So, I thought it might help to try to give you a more in depth explanation of my take on this.
Here goes. In my experience, when neurotypicals who want to be helpful say ‘Everyone’s a bit autistic’ they tend to mean something like ‘Don’t worry, you’re not alone, it’s okay’. However, what an Autist hears is: ‘You’re no different to anyone else, why are you making such a fuss?’. Now if you’re an Autist – particularly one who manages to ‘pass’ as neurotypical most of the time – this ‘Why are you making such a fuss over nothing?’ is an all too familiar record. You’ve heard it in various ways over the years, about so many different things, because so many people just refuse to accept that you experience things differently. It doesn’t matter how many times and how many different ways you try to tell them. For those people, if you look ‘normal’, and most of the time you behave ‘normal’, then it is too much for their minds to cope with that you might not be ‘just like them’. They need you to fit into the box they have created in their minds that defines ‘person’, because that keeps things safe, ordered and understandable for them – the world remains the way they think it is.
If you look at it that way, you can perhaps understand why Autists are sometimes confused when we’re told that we’re the ones who lack empathy!
For an example of how we experience things differently, here’s how I experience going out in the snow.
First, there’s all the sensory input of all the layers that have to be put on before you even get out the door, the physical sensation of the clothes, the amount of movement that has to be done to get into everything, the difference in temperatures of shoes and coats, even things being damp from the last outing.
Then there’s the getting out of the door – the struggle with whatever I’m carrying, with gloves and hats affecting what I can physically do and see, and the sensations and feelings that this causes.
It’s important to understand that all of these things come into my awareness even if I don’t want them to. It’s not a choice.
Then there’s the stepping out into the snow, the concentration and physical control required not to fall, the sound of the snow underneath my feet, the blinding brightness of it, and the cold, the extreme cold that pierces my skin, my ears, my nose. And the wind, the noise, the sensation, the chill, the being buffeted and the sound of the things it’s moving. And all of that continuing all the time to wherever I’m going. I am aware and experiencing it all, all of the time. There is no shut out, no filtering out – it is like each of these individual sensations is a person shouting that sensation at me over and over and over.
Now add to that, that most of the times I go out I’m taking with me one, two or three other smaller autists. And they are all experiencing all of that too, and I’m having to manage not only my own experience but theirs as well, be that good or bad. And all the holding hands and carrying bags and making sure we’ve got everything and panicking we haven’t. Because the Autist brain doesn’t stop making connection after connection after connection, even when you want it to. It’s how we are. It’s not a choice. That’s why some people accuse us of ‘overthinking’. But that’s like me accusing you of overbreathing. You can’t help breathing as much as you do, it’s just what your body does and even if you try to hold your breath or control it, it will eventually default to it’s usual pattern. Same thing with the Autist brain and the connections it makes constantly. It’s how we function, even if that seems to create dysfunction.
Overall, as you can see, after three snow days it’s a miracle that I am still standing!! It’s also totally unsurprising that even short trips out into the snow lead to mini meltdowns all round. If we could, we would all sit in separate dark rooms for half an hour afterwards, but we can’t. Hence the meltdowns.
That’s the difference I think. That we genuinely need to block out all senses to decompress after the massive sensory onslaught that is snow, even for a few minutes. Neurotypicals might be knackered or cold or need to warm up or calm down a bit, but because of the ability to filter out, to not even notice certain things, there isn’t the processing of all that input that we have to do. It’s not a choice. It’s how we are.
Does that mean we didn’t go out in the snow? Does that mean we didn’t make snowmen or pull each other round on sledges? Hell no! We just accepted that shit was going to hit the fan afterwards and did it anyway. We just did it manageably, for a short amount of time, in the back garden, knowing there would be food and warmth nearby to re-regulate – so the level of shit hitting fans was lower than it might otherwise have been.
I should say that I’m not intending to imply that a neurotypical person isn’t going to experience sensory overload sometimes, or social awkwardness, or any number of other things which one might associate with Autism. However, I hope my example goes some way to helping neurotypicals understand that just because you experience some similar things, doesn’t mean that you are neurologically diverse. It doesn’t mean that your brain and your ways of understanding and processing are fundamentally differently structured to those of most people in society. As the meme I shared last night says, just because you have backache and feel a bit sick doesn’t mean you’re pregnant – some of the same symptoms, whole different ball game.
The fact that you experience those things, just means that like us, you’re human. We are all living in the same world and if you can open your mind to the fact that some people are experiencing it very differently to you, then maybe we can find a more genuine understanding of one another and a more helpful way to support one another. And if we can do that, then maybe the great and complementary talents that our differently functioning brains give us – autist and non-autist alike – could be used to help us all be the most amazing human beings that we can be.
If you’re interested enough to be reading an autism blog, then you probably already know that Autists often struggle with relating to other people. In our family that manifests itself in variety of ways. The nearly three-year-old communicates her needs and wants through her actions and sounds – but you have to be pretty observant to interpret them and even then sometimes you don’t know. The seven-year-old has no off button, no awareness of social boundaries, of other people, what they’re doing, why this might not be the time to discuss what the largest river in the world is, and, most worryingly, no awareness of stranger danger whatsoever. The now twelve-year-old finds the world of high school friendships bewildering and his attempts to get information across – when others just can’t understand what seems obvious to him – can seem abrupt and even rude.
And me? Well over forty-five years of life I’ve learnt to pass as neuro-typical – up to a point – as many women with Asperger’s do, hence the frequency of late diagnosis. The thing is, I’m at a point in my life, with the recent ending of a relationship, that I find myself deciding to make a fresh start – and while that is a wonderful opportunity, it’s also a potential minefield for an Autist like me who can ‘pass’. And it’s that minefield that I want to talk about in this blog post.
You see, this new start has meant, by accident or design, developing friendships with people who were maybe just acquaintances up until now – and acquaintance-ship is something most female Aspies, in my experience, can manage. However, negotiating those transitions from acquaintance to friend has thrown my awareness of where my social capabilities end into sharp focus. Some, glorious people, made that transition with me (both now and in the past) with no issues whatsoever. They are those awesome friends I now have who not only tolerate, but have a laugh with me about, my clumsy social skills, occasional vagueness, frequent oversharing and inappropriate directness. You know who you are and I love you.
However, I totally understand that it’s much harder for some other people. For example, I had a friend round the other night and I was trying to explain that as an Aspie (someone with Asperger’s) I don’t really ‘get’ social nuance, and he looked at me and said “I don’t really know what you mean by that”. And that’s not the first time that’s been said to me, because I guess if you do ‘get’ social nuance, you’ve never had to think about it – it’s instinctive for neuro-typicals and a mystery to Autists, so it’s a challenge for either side to articulate it. I know I didn’t explain it very well at the time, but if I had a chance to again, I think my best attempt would be to say:
“It’s the understanding of the unsaid meanings in conversations, the hints, the suggestions, the sarcasm, the flirting etc.– the things that make connections with the other person without them being directly said”
You see, unless it’s really, blatantly obvious – and I do mean neon sign obvious – at least 50% of that stuff will go right past me. As much as I love sarcasm and word play and all that, I really don’t get subtle and I don’t do subtle.
The problem with that, is not just that I can misinterpret other people, it can also mean that how I behave can be totally misinterpreted.
With the opposite sex for example, I have so often been told I was flirting with someone when I genuinely wasn’t intending to – even though everyone around me thought it was obvious. I now realise that that’s because people fascinate me. You know all those movies and cartoons about aliens discovering the human race for the first time and how intriguing they find them and want to know everything about them? That’s basically me. So, a person I haven’t met before or don’t know that well, is fascinating to find out about. So, from the outside what you see is: I take a real interest in what they’re saying, I focus on them, I ask questions, I smile, I joke, I laugh, my body language is probably quite open – how could that possibly be interpreted as flirting??!!
Yes, of course, in retrospect, I get it – but at the time, not at all! And while that is mostly just funny, it can often be frustrating that men think my level of interest is much greater than it is, because it can mean either they don’t bother to get to know me better because they think I’m too full on, or they pursue me when I really don’t want them to.
You see, essentially while I have the experiences, responsibilities and (sometimes) emotional maturity of a highly intelligent forty-five-year-old woman, I have the social awareness of a seven year old! Which can be as annoying and/or hilarious for me as it is for anyone I interact with on anything other than a superficial level.
So, as you can see, the kryptonite I talked about in my first blog is absolutely littered about the place when it comes to friendships and relationships. Here’s my solution, in case you need it: my handy guide for non-Autists to removing that Kryptonite, if you want to hang out with Autists like me.
- Don’t assume anything, at all, ever – no matter how obvious it seems! If you want to know if an Autist likes you/doesn’t like you, wants to hang out with you, thinks you’re an idiot, feels the same as you do etc. etc. – ask them! It is genuinely the only way you’ll know – usual social signals do not apply.
- If you’re going to hint, suggest, flirt, be sarcastic etc – and please do, it’s fun – you might want to check in every now and again with a bit of direct conversation, so you know your Autist friend is still following you. Don’t worry, if you ask, we’ll tell you, no hard feelings – just possibly giggles – in a good way.
- If the Autist you’re interacting with suddenly does or says something that seems weird or inappropriate, don’t assume that they’re insensitive, stupid, uncaring, immature etc. etc. Despite this social transgression, they are still everything you were enjoying about them up to that point, you’ve just hit the limit of their social capabilities. All you need to do is chat about it, have a laugh about it and move on. Remember it’s only the social awareness that’s age seven, don’t extrapolate that onto our intelligence, awareness, life experience, maturity or anything else – unless you really want to piss us off.
As I said in my first blog, Superman is only useless around kryptonite, other than that he is awesome.
Relationships and friendships with Autists are only hard work if you try to pretend they’re not Autists – that’s the kryptonite
Accept an Autist as they are, and you may just find the most loyal, adaptable, accommodating, caring and – at times – highly entertaining friend, who will give you a whole new window on the world that you’d never even considered.
So, remove the kryptonite, grab that Superhero’s hand and let them fly you into the stratosphere – the sunshine is glorious up here!
I accidentally started a blog…
Hi, I’m Justine, and here’s some stuff that I originally wrote to be a facebook post, realised it was far too bloody long and so made a blog. This may be my only post, this may be the start of many, either way, here’s what I want to say:
Amongst many other things 2017 was the year I discovered that me and my three kids are all on the autistic spectrum – some of us are fully diagnosed, some partially, some yet to begin that process. Telling people about that discovery has elicited a lot of different responses – from people who love and care about us as much as from those that just wanted to chuck their two penn’orth in. Some have told me outright that we don’t have it as far as they’re concerned, some have told me to be cautious of taking on a label for myself or the children, some have told me not to worry about it because ‘we’re all on the spectrum’. These and various other responses have attempted to somehow dilute and normalise our discovery. What follows isn’t meant as a criticism of those responses, because I know all those people were trying to be helpful and supportive which I appreciate, it’s more meant to try to explain us better, so that people who genuinely want to be supportive can.
You see the problem with all these well-meaning responses is that they come from a very different idea about what it is to be an Autist (which is how we like to refer to ourselves) than the one we, as a family, have. So, it feels important to put out there how we see being members of the Royal Circle of Autism (which is how we refer to it in our house after the 7 year old named it that). So here goes:
Discovering we were autistic made the world make sense, because suddenly it explained both our struggles and what we were great at. Almost more importantly than that though, it meant we understood other people better. You see, if you grow up as an un-diagnosed Autist and everyone treats you as if you’re like everyone else, then you assume everyone else is like you – at least that’s what I did. Now, we as a family know that most people aren’t like us. We know that they have non-autist brains that are wired very differently, and so the world makes a whole lot more sense. We understand why there are things that are obvious to us that some non-autists struggle to make sense of. We understand why some non-autists are really impressed by things we do that look difficult to them but come really easily to us. Discovering we were autistic allowed us to ditch the life strategies and advice that made us feel awful about ourselves because they never worked for the way our brains were wired. It allowed us to explore new strategies that might seem counter-productive to a non-autist brain but work great for us. Discovering our autism has made us more compassionate to ourselves and to others.
What discovering we were Autists didn’t do was make us see ourselves as disabled.
Here’s the best analogy I’ve come up with for this:
For us, calling autism a disability is like calling Superman disabled because you’ve only seen him in a room with a bit of kryptonite in it. It’s like watching him struggle and saying ‘It’s just a bit of green rock and it’s not affecting anyone else, why is he making such a massive fuss?’ Thankfully, Superman’s good friends know better, they know that if they move the kryptonite or move him away from it, he can fly, he can shoot laser beams from his eyes, he can do things humans could never dream of doing and he can save the whole goddamn world! His good friends don’t keep him in a room with the green rock and try to get him ‘used’ to it. Why not? Because they know that if that’s all they concentrate on then the best they’ll succeed in is suppressing his superpowers – and then you’ve just got a bloke in tights sitting in a room with a green rock, and how does that help anyone?!
There is a lot of Autist kryptonite in this world and there are many autists who can tell you all about their own personal kryptonite (who knows, I might even blog about it), but the thing to remember is that if you’re a non-autist and you can shift that kryptonite for them, if you can help them move them away from it, then you will see that Autist achieve marvels like you wouldn’t believe. And god knows this world needs some superheroes right now.
If you’ve read to the end of this thank you. I hope it’s given you an insight into how we in our family define and celebrate our autism. I’m also writing this as a massive thankyou to all those who’ve been my personal kryptonite shifters towards the end of what’s been a really tough year and whose commitment to continue hanging out with us and shifting those green rocks when needed I feel utterly blessed by every day. I think you all know who you are and I genuinely couldn’t do it without you.
Happy New Year everyone. Here’s to flying, laser beams, pants over tights and saving the world in 2018.