Curing Autism Parents

This is wonderful, practical and clear so just had to reblog!

Autistic Observations

Since I have been involved in the online communities of autism and autistic culture, I noticed a divide between self-proclaimed autism parents and allistic medical professionals, and autistic adults like myself.

Yet don’t we have the same goal, a betterment for autistic people? Chris Bonnello of Autistic Not Weird recently wrote with a parent of autistic kids about the hate mail she received about how she talks about autism.

I am against personalized hate mail, but I will admit to getting into arguments with autism parents to the point of being banned from autism support groups.

In my activism and life in general, I have received a lot of dismissive and hateful comments from autism parents. They insisted I was hateful and had no idea what it was like to be autistic. That I didn’t know about self-harm, stimming, incontinence, etc. That I was a burden to my parents and…

View original post 806 more words

Advertisements

Autistic Burnout: The Cost of Masking and Passing

This is really important to understand and is absolutely where I have been for a while now…

Ryan Boren

I’ve experienced several moments of burnout in my life and career. Being something that I neurologically am not is exhausting. Wearing the mask of neurotypicality drains my batteries and melts my spoons. For a long time, for decades, I didn’t fully understand what was going on with me. I didn’t understand the root causes of my cycles of burnout. Finding the Actually Autistic community online woke me to the concept of autistic burnout. When I found the community writing excerpted below, I finally understood an important part of myself. Looking back on my life, I recognized those periods when coping mechanisms had stopped working and crumbled. I recognized my phases and changes as continuous fluid adaptation.

These periods of burnout caused problems at school and work. I would lose executive function and self-care skills. My capacity for sensory and social overload dwindled to near nothing. I avoided speaking and…

View original post 6,905 more words

Of Meltdowns and the Cup of Overwhelm

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.

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 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