6 things autistic adults want you to know when you discover your kid is autistic

I’m on a lovely solo mums group on Facebook and today a mum posted about her concerns about discovering her young daughter might be autistic.  There were a few others who were on a similar journey and for some reason – I was probably avoiding doing something else! – I put together a post with all the things I thought they should know – and by the time I’d finished I thought, do you know what? I should blog that!

So here, thanks to the inspiration of those lovely ladies, is that list, for parents who want to do the right thing in supporting their awesome autistic kids and not get drawn down the path of trying to mould them towards neurotypical norms.

1. Autism is not a disease or a mental illness

Autism is not a disease or a mental illness, it’s a different way of being. It is however a disability because the way the world is set up is disabling to us. There is nothing wrong with being disabled. (As someone who initally baulked at the disability label I’d like to apologise to the disabled community at my ableist attitudes to the word disability and my seeking to distance myself from it, you learn better you do better and hopefully I’l continue to learn).

2. We prefer ‘autistic person’ over ‘person with autism’

When autistic people are surveyed, it’s usually 90% plus that prefer to be called autistic people rather than people with autism. Using the terminology ‘autistic people’ is called Identity First Language or IFL as opposed to Person First Language or PFL which is ‘people with autism’. Academics, educationalists and people who are just putting their oar in will often tell you you should use PFL, but they’re not autistic so it’s not really for them to say. If an autistic individual expresses a preference for PFL respect that, but if you’re using generalised terms, use IFL. Autism is not an add on, it’s the way our brains are wired. I am no more a person with autism than I am a person with femaleness.

3. The Puzzle Piece as a symbol of autistic people is offensive and ableist, please don’t use it or support organisations that defend its use

This is a big one. Please show your kid that they are not missing a piece, they don’t have to be made to fit, they are not a puzzle. Those are totally the wrong messages so just don’t start with it. I know this sounds harsh but it really doesn’t matter how you individually interpret it or how you can twist the narrative to make it seem okay because you/your kid happen to like puzzle pieces. Let them like puzzles for what they are, and not make them a symbol to represent autism, with all the internalised ableism that goes along with that. Autistic people didn’t choose that symbol it was chosen by non-autistic people for what we meant to them, and that’s really not okay.  So please, recognise the ableism inherent in it, don’t use it and call out people that do. Here’s a great article about the history of it, who can tell you about it far better than I can:


4. Applied Behaviour Analysis (ABA) is damaging to autists, even the ‘modern’ kind

Applied Behaviour Analysis (or ABA for short) is abusive, yes even the so called ‘good’ ABA that involves reward and not punishment. Tragically, it is the number one recommended therapy across the US and used widely in the UK and it’s big business so the chances are it will be marketed to you at some point. It is based on gay conversion therapy, and it’s founder Ivar Lovaas, the ’father of ABA’ said this

“You see you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build a person. (Lovaas cited by Chance, 1974, p76)”

Yeah you read that right. According to him, we’re not human, we not actually people. That is not someone whose advice you should be taking about your child. Please just don’t even go there. Listen to the autistic adults that have been through it – it traumatises people and causes long lasting damage to the mental health of the autists involved. It teaches ignoring your instincts and compliance above all else and that love can be traded as a reward. That’s not healthy for anyone and can be utterly devastating in so many ways including the impact it has on future relationships. So many people have made the case so much better than I can, and some wonderful people have put together a website with many many articles going into this further.


5. Listen to autistic people more than you listen to the parents of autistic people or so called experts who aren’t autistic

You wouldn’t take swimming instruction from someone who’d sat on the sidelines and watched people in a pool over someone who swam in it every day. Same thing. If I could tell you only one thing about autism it would be that what it looks like is going on to you from the outside is very very rarely what’s actually going on on the inside, so I can’t stress to you how important it is that you listen to autistic people who’ve actually experienced it – and listen to your kid when they try to explain what’s going on, don’t assume they’re just being naughty/overreacting. We literally experience the world differently to you so what we’re dealing with is totally different and often things you are not even aware exist.

There are many fine bloggers, FB pages, groups that you can follow – check out The Royal Circle of Autism facebook page where I share most of them regularly. Remember that the autists you are reading may be both verbal and non-verbal so please don’t fall for the ‘my kid isn’t like you because you can express yourself’ narrative that some self-proclaimed “autism mums” throw about, because it’s absolute nonsense. Many of the finest writers had no externally obvious use of language into their teens. They can help you no end to understand a kid who isn’t using language in the conventional sense.

And while I’m here, please don’t call yourself an “autism parent” – because a/ it’s your kids identity not yours (autistic parent is obviously fine if you are yourself) and b/you really don’t want to be associating with some of the martyr narratives that go along with that term and the damage those people do to their kids – stay in the safe lane!

A quick world of warning though,  you may have noticed, that we are very direct and unfiltered and if you’re not used to it you might think it’s rude. It’s not it’s how we communicate – and many autists find the neurotypical way of dancing round subjects and padding out with small talk rude as it deviates from the point) Neurotypical culture and autistic culture are very different in that respect. Some of us as autists will try to change our method of communication to fit in with neurotypical culture, but that is exhausting and we shouldn’t have to. If you are in our spaces online or in real-life, please respect that aspect of our culture

6. Be very very very wary of ‘early intervention’

Early intervention can do a lot more harm than good primarily because it often involves inflicting thinly veiled ABA practices on very young children who may never recover from that. Your goal should be to support your kid to grow up autistically and be the best autist they can be. I’ve sat through the National Autistic Society’s Early Bird programme for parents of autistic kids under 5 and it’s offensive, ableist and deeply patronising to the autistic community. I watched videos that no one in 20 years had notices what the autistic kids were actually doing because everyone had focussed on what they weren’t doing. As a result, their endeavours were ignored and not supported and instead of building on their development, the suggested interventions knocked them down, dashed their confidence and left them feeling why should they bother. Just be very very very careful. Here’s another great resource from In the loop about neurodiversity about the red flags to look out for in early intervention. https://intheloopaboutneurodiversity.wordpress.com/…

So there you have it, the six things I thought I would want people to know if they were just starting out on the journey of discovering their kid was autistic. I hope it’s helpful, please feel free to share, comment, ask questions.

And thanks to the solo mums for the inspiration to get this post written!


The Ableist History of the Puzzle Piece Symbol for Autism

I share this article so often I thought it would be helpful to reblog it as It seems that while there are many articles dealing with this issue this seems the most complete and easy to understand. Thank you Cassandra for putting it so brilliantly.

In the Loop About Neurodiversity

The puzzle piece is the most commonly recognized symbol for autism awareness. But many people are unaware of it’s ableist history.

On World Autism Awareness Day (April 2nd) , many neurotypical people show support and spread “autism awareness” for their autistic family members and friends by displaying the puzzle piece ribbon, wearing puzzle piece pins, and put puzzle piece stickers and decals on their car bumpers and windows. But one question is commonly forgotten; what do autistic people themselves think of the puzzle piece symbol?

While there are some autistic people who may identify with the puzzle piece, a large majority of autistic people don’t. Not only was the puzzle piece symbol used without input from the autistic community, but it has been used to stigmatize and dehumanize autistic people for decades, and continues to be used in this manner today. Despite overwhelming opposition for the puzzle piece symbol by…

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New Research Suggests Social Issues are Down to Neurotypicals more than Autistics

This is a great article and a concept that really needs to be fully grasped by the non-autistic community if Autists are ever to have the same life opportunities as the rest of the population.

Intersectional Neurodiversity

colorful-brains-560 Picture by Joan M. Mas

Autism is seen, in popular representations, largely as a social and communication disorder. Formerly framed as stemming from an autistic lack of a “social instinct”, the current dominant idea is that something is deficient or missing in autistic social cognition. Often referred to as a cognitive deficit in “empathy” or “theory of mind”, much research on autistic social issues has focused on trying to clarify and detect this inside autistic brains and minds. The search for an elusive broken “theory of mind module” or “empathy mechanism” in the brain, and its ensuing cognitive manifestations, however, has led to conflicting results – with some scientists even concluding that autistic people feel too much empathy rather than too little.

Another view is that this is not simply an individual neuro-cognitive issue, but rather a wider social problem. Against the idea that autistic people have too much or…

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There’s a war going on

There’s a war going on out here, and my people are dying.

People are calling us snowflakes. People are saying we’re making a fuss over nothing. People are saying they know better. People are saying everyone has a right to their opinion. People are perpetuating the ‘we are all on the spectrum’ myth that belittles our experience.

“You’re not really that different” they say, “This stuff isn’t important”

But no matter how trivial some think our struggle is, we are still being attacked. There are many people still saying we are an epidemic that needs to be wiped from the face of the earth, and we are still dying.

It doesn’t matter that we are on the side of fairness and justice, just fighting to be allowed to exist, because we do not have the resources they have, and so we are dying.

Of course, as in all wars both sides think they’re in the right, both think they are fighting the ‘good fight’. History will eventually judge the ‘good guys’ and the ‘bad guys’ in any war – and on the whole the people who are persecuting others just for existing and being who they are, the people who are denying the voice of those people, those tend to be seen as the bad guys. History might be written by the victors, but when it’s that clear cut, time reveals the truth.

The autistic side

On one side are the autistic people that accept, embrace and celebrate being autistic. We are the autists who understand that the struggles we have in the world are because the world isn’t made for us – whether that be not accommodating our sensory needs, our alternative communication, our alone time or anything else that we need to just exist as we are. And that’s all we’re fighting for, just to be allowed to exist as we are with the same rights everyone else has. The world is already adapted to neurotypicals, why shouldn’t it also be adapted to autists?

As well as us there are a growing number of amazing neurotypicals who are our allies. Some are NT (neurotypical) parents of autistic kids who seek out and listen to adult autists. They understand that forcing their child to be neurotypical is not a desirable or sensible goal. Others are just interested NTs who can’t believe how subjugated our voices are and want to do what’s right to support this wonderful community.

They are often the people who understand how important autists are to the world. Some see a broken world and they know that the only people who stand a fighting chance of working out how to fix it are those who can see it in a completely different way, and they want that chance for the world, and so they fight along side us.

The anti-autistic side

On the other side are many.

They are the autism professionals who do not bother to listen to the voices of autistic adults and base their assumptions on an outdated medical model. Worse, there are those who make money from ‘cures’ and therapies that traumatise our people.

I was told that I had to make my child uncomfortable in order for her to learn – why? Who learns when they are uncomfortable? That’s not learning that’s forced compliance. And because so many autists are taught forced compliance we are more open to abuse and manipulation, and we are being abused and we are dying. Some of us are dying at the hands of those that abuse and manipulate us. Some of us are dying because a lifetime of being told that everything we feel is wrong and we should to suppress it eventually takes its toll and we take our own lives. A 2016 study (see NHS website) showed that we are nearly 8 times more likely to take our own lives than the average population and our life expectancy is nearly 16 years less than the average.

Some of us are dying because of the lack of understanding in the medical profession, so that if we go into hospital because of our different reactions to pain or the differences in the way we express ourselves we are more likely not to receive the treatment we need. We are more likely to be dismissed. A recent study showed we are more likely to die in hospital because of not receiving the correct treatment than others with the same condition.

There are the NT parents of autistic kids who blindly believe those professionals and so think the autistic adults must be wrong. Even though it is our lived experience they think professionals must know better and we are being unreasonable to say otherwise. They continue to force their children to be like the perceived norm. When they sit in the Early Bird programme for parents with children under five, like I had to, they are reassured that ‘the good thing about autism is that no one will notice’. They are told autism is a bad thing that should be hidden – overtly or covertly but the message is there. They are told to make their kids more like the norm, and they believe that is what’s right because they are ‘good people’ who don’t question these things and think if it’s ‘official’ then it must be right. I feel sorry for these people. They are caught up in a war that is not of their doing and they are often the ones that once given the correct information swap sides.

Then there are the parents of autistic kids that are so obsessed with how hard their own lives are that they ignore their child and the communication that that autistic child attempts, because it’s not like their own. They ignore autistic adults who offer to help them communicate with their child. They write blogs that utterly annihilate their child’s privacy and autonomy. They write books that act as if their child is a voiceless object that they are a hero for looking after. They write plays like ‘All in a row’ or ‘Living with Luke’ that perpetuate the myths that are causing our people to die – and are celebrated for it by the autism professionals and organisations that benefit from treating our very way of being as if it’s a disease.

There are the parents who invent ‘cures’ forcing their children to drink bleach and selling it to other people who blindly accept and force that abuse on their own children. The say the white lumps they see the children bringing up/out after this are the parasites that are causing autism, when in fact those are chunks of their child’s own insides. That is how deep the hatred of being autistic runs.

Even worse there are parents who kill their autistic children because they believe they can’t cope, and they get away with it because of the ‘hero in a tragedy’ myths so many of these ‘autism warrior’ parents are putting out.

We are dying and these are the group that are directly killing us the most, but the myths that perpetuate from them are supported by many many professionals and organisations working with autistics and that is horrific and deadly.

I have little sympathy for parents who behave in any of these ways. Sometimes I wonder if the single minded focus they show, the fact they struggle to cope with the sensory and emotional challenges of caring for their autistic children, and the fact that autism often runs in families, means these parents are actually undiagnosed autists. But being autistic isn’t an excuse for being an abuser or murderer, even in a world in which you are surrounded by messages about autism that could easily make you think such things were sad but acceptable when it comes to autists.

Then there are, unbelievably, some autists on this side of the war. They look at their struggles, believe the hype and blame autism for them.  They see their autism as separate to themselves, they want cure, their goal is to be neurotypical, no matter what it costs them. They have been conditioned by all the others on this side of the war that who they naturally are is wrong and pathological. They have completely internalised that ableism. It is tragic. They become foot soldiers and say to autist advocates fighting for our existence ‘we are not all like you, you don’t speak for me’. The professionals and organisations who benefit from their view point parade them as examples of how grateful autists should be of their abuse, just because some autists believe the tragedy narrative. Those autists often attack us even more vehemently than the others on this side, so attached to their denial, and so desirous of the support of the rest of their side. They are single minded in their focus because their struggles are great and they genuinely believe that autism – not the attitude of those around them who support that belief – is the problem. I know those not willing to hear this yet will feel patronised and angry just by reading it, but I am one of the many autists for whom it is sickeningly hard not to tell the truth, no matter what the consequences.

Many of us have been through that stage of just wanting to be ‘normal’, many of us have been in denial precisely because of the societal myths around autism – for some this stage is just a passing phase, but some get stuck at that point in the journey. I hope one day something breaks through, some article, some comment, something that starts them back on that journey to lose that internal hatred of who they are towards self-acceptance and seeing the amazing gifts of being autistic and not just the challenges.


How will history judge this war?

As I said, where one side of the war is trying to subjugate the other, to deny their experience, their voice and their right to exist, those are usually seen in hindsight as the ‘bad guys’, even if it takes many years to get there. It doesn’t matter that they think what they’re doing is best for the ‘good guys’, it doesn’t matter that they think it would make things better for the world. All of the things most of us find abhorrent today were once believed to be ‘for the best’ by huge numbers of people

We don’t consider the extermination of the Jews acceptable just because the Nazis genuinely believed the world would be better without them.

We don’t consider slave owners okay, just because they genuinely believed that non-whites were a savage species and so it was okay to ignore their voice, own them and give them no autonomy over their own existence.

We don’t consider conversion therapies to ‘cure’ people of being gay acceptable, just because the people pushing them thought it was best. Did it make it okay because some gay people said they wanted to be cured? (And if we find those conversion therapies unacceptable why do some consider it acceptable that the same form of therapy is used to traumatise autists in to being ‘normal’ to this day?)

We don’t consider it okay for women to not have the vote and be considered the property of their husbands just because many people believed women were not as intellectually capable as men.

Being autistic is just as much a part of who we are as our race, gender or sexuality. Just as with all of those things, finding yourself born into a non-dominant category can present massive challenges in a world that is not made for you. The problem, however, remains the world, not us, as all the fights that those groups have battled and continue to battle have shown us.

What some people find hard to accept is that for autists with differing support needs it is still the case that it is the lack of accommodation and understanding in the world that is the problem.  That is why functioning labels are offensive – what our support needs are bears no relation to how we ‘function’ internally as most people would understand it.

Those of us who are non verbal or need support with our physical needs do not have less right to dignity, respect and access to communication than those who have less obvious support needs and are able to communicate through spoken language. It is a spectrum and we all have different presentations on it (it does NOT mean a spectrum from ‘not autistic’ to ‘severely autistic’). I use spoken language and can usually move about but sometimes I can do neither of those things. Calling me ‘high functioning’ therefore denies me the support I need. For some whose experience is similar to mine this becomes too much over many decades and they take their own lives. We are dying.

Those considered ‘low functioning’ by society are regularly denied their rights and their privacy and no attempt is made to seek their consent about things in their lives that impact them or are about them. The injustice of that is only highlighted when considered against the background of both anecdotal and research evidence of non-verbal autists being written off as not having thought or feeling because they didn’t communicate in the way neurotypical society believed they should, who then  communicated clearly and eloquently once given access to appropriate alternative communication. Some of those non-verbal autists are amongst the most eloquent advocates, poets and writers in our community, but so what if they weren’t? Does that mean they shouldn’t have the rights or privacy that the general population take for granted? If you can’t communicate with someone, does that mean you can automatically assume they have no thoughts or feelings just because they are not expressed in a way you understand? Does that mean you can then use them however you want? Speak for them? Share their struggles through blogs, plays, books without ever giving them a say in that?

There is a war going on. I call it a war because we are being attacked and are dying as a result. We are dying because of the misconceptions around autism and the refusal of our attackers to accept our right to exist as we are.

I hope that eventually we will win, because we have as much right to a long and happy life as every other neurotype, but I don’t know if that’s the way the war will turn. The world is not made for us, we need both support and solace to access so many things. We do not have the time or resources either financially, physically or emotionally that the other side have, as so much of those are taken up just in existing in the world. But we are autistic and the focus we are capable of in the right circumstances is undeniable and we will continue to fight and find our way through.

Please help us, please be on the right side of history. Listen to autistic adults. Challenge the so-called experts when they tell you we are to be pitied, marginalised, normalised. Challenge people when they claim ‘we’re all on the spectrum’ to learn about what autism actually is, to go beyond the stereotypes and the myths. Learn about our communication and our culture and direct others to it. Fight with us, and maybe more of us will survive, because it’s been a long long battle and we have a very long way to go and we are so, so tired, as we drag ourselves onwards just for our basic rights.

We have a right to a voice even if no one has worked out how to hear it yet.

We have a right to dignity and respect and not to be used without our consent in someone else’s tragedy narrative.

We have a right to not be trained to be compliant making us vulnerable to abuse.

We have a right to be heard when it comes to medical treatment and not denied because of how we experience things internally or how we communicate externally.

We have a right to not be pounded by the weight of people’s ignorance and denial to the point that our suicide rate is nearly 8 times higher than the national average.

We have a right to not be blamed when we are murdered.

We have a right to life.

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…

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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…

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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.