by Nanny Aut
There is a debate amongst the autistic community about whether being autistic should be considered a disability or not. I am very much on the side where I consider myself disabled. I don’t see it as a bad word or that it makes myself less than. I just see it as a recognition that my abilities aren’t the same as the general population and that there are areas where I am always going to need support and accommodation in this neurotypical world. Particularly if I want to be able to work to my best autistic self.
In addition to my high skill spikes where I excel, I also have some major skill troughs. These come in three categories.
There are some things that I can’t do, and the general population can. These are things that, no matter how much effort I put into learning and how much willpower I apply, my brain doesn’t and will never work that way.
There are some things that I can force my brain to do, but really shouldn’t, because the cost for doing them, in a way my brain wasn’t designed to, is too high.
And there are some things that I can learn to do, although often in a different way to the majority, with supports in place – mental ramps, if you like.
And I was reminded, in a very helpful comment on my last post, that not everyone realises or recognises that barriers exist to learning neurotypical (NT) skills in an NT way. That too many of our children, when teachers see a skills deficit, assume that it is an attitude problem, not a barrier caused by the different way that our brains work.
The quote that was identified was this one:
“We are put under direct threat. Both from our peers who have been taught to bully difference, and from the teachers who actively punish our natural behaviours, and label them, and by extension us, as bad. We also fear the loss of rewards, lost for things outside of our control, and get frustrated with ourselves for being unable to manage the skills that we don’t have, haven’t been taught to us but are still expected to use.”
The commenter, quite rightly, pointed out that many teachers might assume that the solution to a lack of neurotypical skills would be to simply teach neurotypical skills and expect the student to comply. And, quite rightly, pointed out that this could cause further harm and trauma.
As a result, here is a follow-on piece on our skills base for learning, particularly those that can lead to punishments in the classroom. Punishments fundamentally for us failing to have the same neurology as the majority. I have split it into three categories:
Things we can’t learn – because our brains just don’t work that way.
Things we can be taught but shouldn’t – because it will make things worse not better.
Things that we can learn – and will actually benefit us.
Things We Can’t Learn
We can’t learn to be less / more sensitive – our sensory systems work the way that they work. At least 90% of autistics have a sensory processing difference (SPD). This means that, unlike the majority, where senses lie around the middle, our senses are either too high or too low. Where these highs and lows are are unique to the individual and do not change over our lifetime. However, different environments and situations can alter how extreme the peaks and troughs are. For instance, if we are feeling safe and secure and our nervous system isn’t stressed and our processing isn’t overloaded then our senses often move much closer to the centre. We manage this imbalance through sensory seeking (stimming) and avoidance.
Some people falsely assume that de-sensitisation through repeated exposure can ‘fix’ this. It doesn’t, it just hardwires the trauma from exposure to the high sense. We can learn not to express our distress because it is not safe to do so. We just learn to scream inside.
We can’t learn to not feel anxiety when our nervous system is severely stressed. When there are sensory and processing stressors setting off the alarm bells in our brains, telling us to ignore them isn’t going to switch off those alarms. Only dealing with the stressors will. Teaching us to ignore them, at best teaches us that our pain does not matter to you, at worst, teaches us to ignore our own body’s signals.
We can’t learn to multi-task. Our brains are just not set up that way. We have a monotropic neurology, specifically designed to focus on one task at a time. At best we can learn to task-switch rapidly, giving the appearance of multi-tasking, but it creates a massive processing load, spikes anxiety and can lead to huge errors occurring. Not to mention being exhausting.
Interesting note: Research into multi-tasking in the general population has shown that NTs do not multi-task well either. They can absolutely do several tasks at the same time, but at significant cost to accuracy and detail. Errors become much more frequent. So multi-tasking isn’t something that should be promoted for anyone.
Following on from this, our inability to multi-task means that we can’t learn to demonstrate listening as required by the ‘Whole body listening’ expectation and actually listen at the same time. You get one or the other. As an ex-teacher, for me, the listening was always the important part, I found it much more helpful for the students than the artificial appearance of students looking like they are listening. However, I often had a hard time with supervisors who failed to understand that these are two completely separate things and who genuinely believed that performing ‘good’ listening genuinely equated to a student actually listening. It doesn’t.
Inability to multi-task also affects our ability to process and adapt at speed. We need time to take in new concepts, process them properly and to dis-assemble and re-assemble our knowledge structure to include the new knowledge. If we aren’t given that time and topics move on too fast without having the underlying connections provided, we can easily get left behind. Repetition and rote won’t help us. We need the connections and the time to place the knowledge. If we are pushed to move at speed, two things happen – we can’t secure connections and the information is lost, and the speed required causes a processing overload.
This also applies to changed routines and plans. If they are sprung on us, without sufficient advanced warning, then we don’t have the time to process and re-direct properly. Which causes a processing overload and, if the overload is too intense, a meltdown.
The biggest one of all is executive function. We don’t have it. No amount of focus, training or willpower is going to magically create it. That student who forgets their pencil every single lesson isn’t doing it on purpose or out of a lack of interest, or feeling a pencil isn’t important. They are doing it because of the lack the executive function skills to remember it. There are ways to build ‘ramps’ to support this gap. Tips and tricks that help us achieve the goal despite the executive function gap. Things like lists, step by step itemising of tasks. Explicitly creating the path from big picture to small picture. Unfortunately, many teachers see this as a temporary measure, a short-term scaffold to help us at the start. But if you remove those ‘ramps’ and expect us to manage without them, because everyone else can, then you are just setting us up for failure. Fifty years on, I still need to do lists for everyday things. Recognising this gap and not expecting us to eventually do without these supports is really important.
Things We Can Learn – but Shouldn’t
There are skills we may not naturally use but can be taught to us. They shouldn’t be, because there is a very good reason that we don’t naturally do them. Being taught to go against the natural way that works for our neurology can cause significant long-term harm. It’s no coincidence that there’s a significantly higher incidence of anxiety and depression amongst autistics and that many autistics are unable to complete school because of mental health issues. It is no coincidence that the rate of suicides for autistics in their late teens and early twenties is significantly higher than in the general population. It is no coincidence that the incidence of serious ‘behavioural issues’ is significantly higher than in the general population.
And it is not because we are autistic. NONE of these things are a natural outcome of being autistic. It is a natural outcome of trying to get our brains to work in a neurotypical way – when that isn’t what our brains are designed to do.
The big one that comes up again and again is eye contact. While this requirement is very embedded in western societal norms, creating false beliefs such as lack of eye contact means you are dishonest, disrespectful or not paying attention, it is not necessary for communication. If it was, then the telephone and the radio would be pretty useless inventions.
For autistics, while we can force ourselves to do it, and can and do create elaborate algorithms to mimic the ‘correct’ ratio of eye contact to looking away, it can often be a painful or overly intimate thing to do. Imagine someone insisting on groping your genitalia while talking to you – that is the level of intimate contact you may be demanding when you ask for eye contact. It can be an extremely serious violation of our bodily autonomy. Now, imagine what that does to a child, being expected to grant that deep intimacy to any adult who demands it – because it is polite. Where do you set your boundaries when permission to protect something so highly intimate to you is removed? The answer is, that for many of us, we don’t. We become vulnerable to abusers and predators because the permission to protect ourselves has been stripped from us.
There are workarounds, such as looking at the top of the nose or forehead, but these are still less than ideal. Imagine giving an important speech with a lot of technical detail. And at the same time, you are expected to pat your head and rub your stomach and stand on one foot. You need to change feet every fifteen seconds and start hopping for the last three words of every sentence. How much focus and attention would you be able to give to the actual speech? And yet, when autistics are asked to perform ‘natural’ eye contact for the comfort of the people they are around, this is exactly the kind of mental gymnastics we need to do to achieve it. It puts us at a serious disadvantage.
Sitting still is another skill that can be taught but shouldn’t be. We move because we need to. We need to fidget to maintain our focus and shut out background noise. We move to boost proprioceptive feedback so we are not fighting surging anxiety. We move to regulate, soothing the amygdala and limbic system so that our brain is calm enough to focus. Take away our ability to move and then you are removing our ability to focus and causing serious stress to our nervous system. Serious enough that it can often trigger a meltdown.
If an autistic child is sitting still and quiet, that is the time to be concerned. It should always be checked out. It may be nothing, but often it is a sign of serious stress. Either the child is masking to keep safe, in which case, by the time they go home the overload and subsequent meltdown will be intense. Or the child is already stressed beyond capacity and has gone into shutdown or fawn (excessive people pleasing) or flop (disconnection).
I was the quiet child in school, tuning out entirely because my brain couldn’t cope with sitting still. Or constantly seeking approval and recognition for teachers because I needed that recognition to feel safe and reduce my overwhelming anxiety. Only when I was identified at nearly fifty was I even aware that stimming existed. And when I learnt to move and fidget and stim again, which had been trained out in early childhood, it was like a miracle. Fifty years of severe anxiety vanished. A lifetime of severe depression vanished. My brain was finally enabled to regulate and look after itself again. The only time those two unpleasant visitors come back now is when I forget and revert back to old habits.
Interesting note: Research has shown that movement is good for everyone – not just autistics. Incorporating regular movement breaks in the school routine helps all children become calmer and focus better. Schools that implement trauma-informed teaching practice, that includes these movement breaks, has shown an 80% reduction in school exclusions and classroom focus and engagement has significantly increased.
Masking aka ‘teaching autistics to pretend to be like neurotypicals in order to fit in’. Newsflash – we are not neurotypical, we don’t take in information, process it or communicate in a neurotypical way. We weren’t designed to. This is why the majority of autistics see being autistic as an integral part of our identity.
Teaching us that we need to hide who we are in order to be acceptable teaches us that WE are unacceptable and that our neurology is unacceptable. Which is not OK. We don’t expect neurotypicals to act in an autistic fashion around us and equally, neurotypicals shouldn’t expect us to act neurotypical around them. Putting aside the ableist arrogance and the terrible theory of mind that leads some NTs to believe that this is a desirable goal, it is also extremely unhealthy for us to mask. It is extremely hard work, exhausting – think performing on stage, trying to figure out the scripts as you go along for 18 hours a day, day in and day out. It takes up a lot of processing, processing that we can be putting to better use, like learning or doing the task we are focused on. And it creates enormous anxiety because, however much we learn and however much we perfect the performance, things will go wrong and we will get attacked – and it will feel like it is our fault for getting it wrong.
Interesting note: It also doesn’t work as protection and in fact, can backfire spectacularly. Research has shown that many NTs experience a very strong negative reaction within fifteen seconds of meeting an autistic – it is the Dino brain responding to a sneak invader to the group. Before the autistic has done anything, that response has kicked it. Weirdly, the negative response is stronger, the better the autistic masks. The brain knows something is wrong but can’t identify it. And because the expectation is for the autistic to act and respond like a neurotypical, the brain is actively searching for anomalies and will be much more aggressive when an anomaly is spotted. However, while some unhappy, insecure individuals will bully difference no matter what, for the majority, if the differences are clear and visible and explained, the brain relaxes. This isn’t a secret interloper trying to infiltrate the group, this is clearly a visitor with visibly different customs. The brain doesn’t have to keep puzzling what the differences are and why they are there. That information has already been given up front.
There are exceptions to this. Because of the way that society is currently set up, it is sometimes not safe for an autistic to go unmasked. It should always be safe to unmask at home and in social situations, as well as in school or the workplace. If it isn’t then this is discrimination and should be challenged. However, out and about, around strangers who don’t understand or trigger-happy authority figures, not masking, especially stimming, can lead to lethal consequences. Teaching where it is vital to mask to keep safe, and alive, is very important to do.
Which leads onto another skill that I wish wasn’t ever necessary and should only be taught for very specific circumstances – Learning to use fawn, flop or freeze as a protective mechanism instead of using fight as a protective mechanism. If our Dino brain learns that it isn’t safe to fight our way out of a situation and fighting will put us at greater risk, it will select flight, freeze, fawn or flop instead. Learning to switch to a non-threatening protective mechanism can be a life-saving skill when you are under unavoidable severe distress and under threat in a public space.
Unfortunately, many ‘therapists’ use this switch to avoid removing stressors. So long as the child is not in fight, what does it matter that they are screaming inside? It is much easier to teach the child not to express their pain than actually change the environment and remove the sources of the distress. Not to put too fine a point on it, if you are doing this, this is abuse. The parent sees a calm child and doesn’t realise how much distress the child is in and thinks the therapy was successful in calming their child. Until their child hits burnout a few years later, develops cPTSD, starts self-harming or has suicidal ideation. And it is too late, the damage is done.
Part of the masking issue is the expectation that autistics experience and display emotions in the same way that NTs do. We don’t, as this article explains. Teaching us what our emotions are, based on what you are observing is confusing at best and pointless at worst. If we have alexithymia, we may be unable to identify our emotions at all. If we don’t, telling us we are angry when we are scared and anxious leads us to doubt our own abilities to read ourselves. And since there are many causes for anxiety to rise, knowing we are anxious isn’t very helpful in solving the problem. Until the cause is removed, the anxiety isn’t going to reduce. Zones of Regulation only work if you have a very thorough understanding of autistic neurology and the way we experience emotions. Otherwise, you are teaching the vocabulary for buying bread, when we are standing in the greengrocer’s.
Things to Learn that Would Genuinely Help
The key thing to learn is self-advocacy and this includes being taught how we differ from the majority and that those differences are ok.
When we know that the rules, that are a mystery to us, are in common understanding with the majority, we can then ask for others to make them explicit. If we know others will assume the worst if there is no explanation, we can explain upfront that we make mistakes frequently. We can explain ahead of time, that if we do something that others find upsetting it was by accident. And that to avoid it happening again, we need someone to explain what was upsetting, why it is upsetting and a better way to approach it the next time. Knowing that we need to explain this avoids others assuming the worst of us. We can also explain that if we aren’t explicitly included in invitations we tend to assume we aren’t invited. If we are genuinely welcome to come alomg, then the invite needs to be specific. The article on communication differences outlines more of the differences between cultures that it is helpful to know.
We can be taught how to ask for help in a way that doesn’t shame us. We can be taught that it’s ok to make mistakes and that everybody does so. The trick is to learn from them.
We can be taught to identify that we are stuck and to ask for help to get started. As children we are unlikely to know about executive function or be able to identify the barriers. So, asking us what the problem is won’t help us – we don’t know.
We can learn workarounds and supports for executive function – tools we will need all our life.
- How to break a task down into its smallest components.
- How to manually organise them into the right order to achieve the goal.
- How to explicitly identify the goal and write it down to refer back to.
- How to always make a list to follow so you don’t get lost mid-task.
- How to chunk a task so it is not overwhelming.
- How to trick your brain, so that it no longer sees a task as something to avoid, the way you would avoid putting your hand on a hot iron.
- How to organise elements of an activity so you are not constantly task-switching.
- How to set alarms and reminders as soon as you are given something to remember in the future.
- How to chain tasks together so they become indelibly linked. Attaching one that is always forgotten to one that never is.
- How to work with how your brain works – having water or rubbish bins within arms reach and in your eyeline so they don’t get forgotten. Or hanging keys / bus pass on the front door, so you have to pick them up to leave the house.
- Having multiple back ups – so pencils in bag, locker, even in each classroom if necessary. That way one is always at hand even if you forget or lose some.
- Having a reminder buddy. Someone who does your remembering for you.
- Having a ‘shadow’ to sit with us and talk us through getting a task started. My daughter and I regularly call each other to do this.
There are numerous other executive function hacks out there. Enough for a whole post / posts at a later date.
We can learn to tune into our bodies and brains to identify the early warning signs of an overload. That point where we are able to exit easily and regulate quickly. The tightening of muscles, the heart rate increase, the flush, the change in breathing, that increase of irritation and struggle to tune-in and focus. And we can learn to become pro-active in regulating at that point. Exiting the room, physical activity, breathing exercises, removing stimulation by using noise-cancelling headphones etc. It is not something we may know automatically to do, we may need to be taught.
We can learn to take mental health days when we need them, before burnout happens and we then need months or years to recover instead of a day.
We can learn to plan ahead for changes in plans. When we are talked through alternatives ahead of time, we can, in time, learn to do this for ourselves. For instance, I catch the bus home every day. If I miss the bus and I don’t have an alternative way to go home, my brain will start to over-process and I will panic. At that point my brain is spinning out of control and will be incapable of identifying good alternatives. I may well hit meltdown. However, if I have already walked through the options ahead of time, even better if they are written down as a reminder, then I can switch easily to a new plan – call home, walk to another bus stop, go to the school office etc.
When I go travelling, I may spend as long on planning the alternatives as I do on the actual holiday – alternatives for travel, alternatives for accommodation, where to go for help, key phrases to ask for help. Walking the area in advance on google maps street view so I know all the bus stops I might need.
When creating the rules for an inclusive classroom, spend some time considering whether they may unfairly impact the autistic children in the room. Whether they require skills that either can’t or shouldn’t be taught to an autistic child.
This is not the same as assuming lack of competence. We do well when we can. It is recognising where you accidentally set your students up for failure by expecting them to work in a way their brains weren’t designed to.
It is really important to remember that we are not broken neurotypicals that need fixing. We are fully functional autistics that do not work in the same way that neurotypicals do. We may need to learn supports and skills that are designed to work with our brains for us to be able to function to our best in a world that is fundamentally not designed for us.
Not so that we can pretend to be copies of neurotypicals but so we can be our best selves unhampered by the disabling expectations of NT norms.