By Heather L.E. McKay
Begin this process by learning to relax and dropping all demands.
What are demands for an autistic person?
When we talk about demands for autistic people – we DON’T mean the traditional understanding of the term “demand”. Eg: to speak authoritatively, or to request something be done urgently, or mandate something by law, or to give an ultimatum, like; a boss demanding something be completed by 5pm – or you’ll be fired. Or society telling us to obey the laws of the country. Or our teachers telling us that if we don’t hand in our paper and get a specific grade – we’ll fail the whole year.
What autistics find to be a demand can be totally different. Yes – those things above are literal demands of our society and are things that can detriment us if we don’t ‘obey’ or ‘conform’. But autistics can find every little thing in the world demanding, overwhelming and harmful.
A serious and harmful demand for us- can be a simple expectation to act, speak, or seem typical, or to do something that a typical person does using muscle memory and without conscious thought. We, as disabled people, must push ourselves, control our whole body, and exert immense energy in order to do the same thing that a typical person does without thinking or effort. These ‘mundane things’ they do not find onerous or painful and often do not understand at all why anyone would find difficult – let alone impossible.
This creates a very large gap in understanding between abled and disabled people. It is true that if you don’t have the lived experience of another person, it can be very difficult (if not impossible in some scenarios) to understand or grasp their reality, or their need for certain things. When we can’t grasp that disabled persons reality, we tend to be ignorant of it. If we are ignorant of it, we become unable to help or support them in a way that is neuroaffirming, or truly meaningful to the disabled person.
When autistic people feel something to be a demand, that inhibits us or causes us pain, we will often demonstrate this pain with our behaviour. We will do any number of things, but frequently we will turn to the F responses to trauma, or we will look like we are ‘lazy’, ‘forgetful’, ‘obstinate’, ‘depressed’, ‘disobedient’, or ‘disrespectful’. We are (usually) none of these things. We are showing you, with the only energy we have left – that we CAN’T! That we have reached our demand tolerance level – and we are responding with a NO!
“No”, is valid! It’s also a complete sentence and has to be listened to and obeyed. When people / our environment and circumstances continue to pile on demands (that have not been identified as, or understood as being a demand for that disabled person) we can inadvertently inflict more trauma and we make them more disabled. The disabled person will sometime increase their behaviours until you are forced to listen to them. Eg: they will become more unable, or more aggressive, or more insular, or more depressed. We need to learn how to identify things that could be a demand for that disabled person.
Let me describe a scenario that occurs every single day to nearly every autistic, that many of us find painful, and often CAN’T comply with or actually do regularly -without burning out or having a meltdown or going into shutdown. It’s something that neurotypicals find extremely easy to do, in fact it becomes a muscle memory for them, and they often find incredibly rude if someone ‘can’t’, ‘won’t’ or ‘doesn’t’ do it.
The autistics reading this, will immediately have their brains jump to about 10 different things that this could be – because there’s a lot of them, and all of them disable us and harm us.
The one I want to discuss right now is the social expectation of saying hello, or “good morning” (greeting people) and smiling at your co-workers (or peers/ teachers / therapists/ strangers etc) every single day – on your first interaction with them every single damn day.
This is the singularly most exhausting thing I can think of right now…. because I’m exhausted, because I’m burnt out, and I’m sick of it.
This is simply an arbitrary social construct that isn’t necessary!
For starters, this spoon-robbing ridiculous need to superficially greet people that you see every single day is a waste of everyone’s time. But it also costs autistic people so much more than just time.
· It costs us spoons / energy
· It causes us to mask
· It makes no logical sense to ask: “how are you?” every new day- when you already told me “fine” yesterday – you lied or hid your true response yesterday, why would it change today? And why do I need to ask a question where the ONLY socially acceptable responses to the question are either of two answers: “fine” or some variation of “good”… and then the other person responds with the same banality and ridiculous same response or ‘fine’ or ‘good’ in return.
It’s an idiocracy loop of wasted time and energy. You may as well insert any nonsensical words or banality into the scenario, and it would have the same outcome. Eg: maybe take a page from the “Seinfeld” series where they thought you could exchange “god bless you” with “you are so goodlooking”(in response to someone sneezing) – because the outcome is the same – it’s a useless outdated tradition that no longer means anything, but we are taught to do it anyway, we say these words without conscious thought, true meaning, or reasons why- so why do it? Noone knows! But we’re ostracised if we don’t – please make it make sense.
· If the person says “good morning” and expects the exact same response – we feel we are forced to lie – what if it’s a terrible morning? – If we say so – we’re called rude or pessimistic, or told to stop ‘bringing everyone down’ or something else.
· It’s ableist!!!!!! Many of us have co-occurring disabilities that make this impossible. Eg: apraxia, dyspraxia, motor disinhibition, situational non-speaking issues etc.
It’s plainly ludicrous – but it’s expected! – which is a huge senseless “demand” on our limited energy resources. It does nothing for anyone, but we are forced to do it. It doesn’t create dopamine, serotonin or help me in any way to do it. But if you don’t do it, you are ostracised from society, defriended, told off or considered the rudest person in the world. It’s one of the most soul sucking, annoying, time wasting, energy draining things that has to be done daily – for no apparent reason – other than to disable people with social disabilities…. People like autistics or ADHD’ers or people with speech issues or difficulties with language.
Can you understand the ableism in these social constructs yet?
Autistic’s and ADHD’ers are called rude all the time, along with many other labels. And as soon as we say “we can’t” or try to explain why we did something – we are gaslit even further and told off for “making excuses”. We are not making excuses – we are supplying you a reason. The fact that you won’t listen, or don’t believe us, or invalidate us – is a you problem! It says you are being ableist, because you aren’t willing to recognise or accept that some people are disabled by social expectations.
All social expectations are demands. Some of them are incredibly painful to us, and some are ableist, and some can be nice for some people (depending on the people). But as soon as you label us as rude (for not conforming to them) instead of disabled (because we ‘can’t’)– you are being ableist.
Some other ‘expectations’ that cause us to go into nervous system overload (or the f responses of trauma):
· Chores: chores are social obligations set by others… they are not usually things that the person has agreed to, needs to do, or has to do…. Please Don’t get defensive here. If your child has the capacity to help out around the house – they would! Children do well IF they can! Calling them a chore is also bad – because it’s setting them up for failure by the definition of the word “chore”, the word chore invokes the thought of being inflicted with pain. Read more in my upcoming blog about chores.
· Getting out of bed: many autistics have multiple sleep disorders, and getting up can be the last straw from a hideous night of tossing and turning, being in pain, having negative thought loops etc – and getting to rest whatsoever.
· Eating all your food, or a meal that someone else chose and gave you no choice in. Many of us have ARFID or another eating disorder – and this is simply something we can’t do and possibly will never be able to do. It doesn’t just cause a horrific demand – it also causes trauma, makes our ARFID or ED worse, it causes massive pain, can physically make us ill, and can cause us to stop eating altogether.
· Bathing or showering: this is one of the biggest spoon robbing activities that a disabled person, or person in burnout can do. It robs us of energy we didn’t have in the first place. And there’s always another way… there are tools that were invented for this very reason. And the Miser generation were taking ‘bird baths’ back in the early 1900’s for this and many other reasons – the expectation to shower once or twice a day is a recent social expectation… not a real need. And if we don’t have the right tools available to take a bath or shower to accommodate our co-occurring disabilities – it becomes a true case of not able – not won’t.
· Masking – for safety or inclusion – it causes us to experience the ‘coke bottle effect’ (See Orion Kelly’s YouTube video on this topic for more information)
And many many more.
Any sort of unnecessary or spoon robbing thing that is seen by our brain/body experiences or nervous system -as a demand- causes our nervous systems to overload – and that’s when we become UNable.
To reset the nervous system, we need to rid ourselves of these demands. Of these things that sap our limited energy.
NOTE: we can’t rid ourselves of masking. Masking is a necessary thing to many communities, and to the ND community – it can be vital to survival and sense of belonging – or being included. If we unmask – we are usually oppressed, judged, excluded etc. Instead: we need to rid ourselves of the need to mask.
Eg: we need to stop doing things that put us in the position of having to mask, like; working from home instead of going into the office, only being around people that are safe to unmask around (like our family or closest friends), homeschooling, emails instead of phone calls etc. These are all things that are influenced by privilege – but where each of us can control some of the things that sap our energy or cause masking – we need to do them in any way we can.
Autistics are often habitual people who like safety and alone time, and this is imperative to our survival. If we don’t get time to take the lid off the ‘coke bottle’ or time to be ourselves and reset our systems, they become overloaded very very quickly and very easily.
As soon as we have overloaded our systems – you’ll know. We have meltdowns, shutdowns, inability to do day-to-day tasks, we tend to want to sleep a lot, or cry a lot, we may look as if we have symptoms of chronic fatigue, or ‘laziness’. It’s not laziness – in an inability to DO anything because we can’t if our bodies won’t obey us. When our nervous systems are overloaded – our whole body reacts as well as our brains.
Some children are labelled with the word “regression’ (read my blog about regression for more information on this). It’s not a regression – it’s nervous system overload and burnout. We sometimes lose the ability to do things (like walk or talk) because our bodies are conserving the energy for simple necessary things like breathing and eating – sleeping or mental health emergencies.
We become completely disabled when we don’t reset regularly.
If you have a child who is displaying any sort of emotional changes – look into nervous system issues and perhaps polyvagal theory, and try to help reset their system – not just today, but every day until they reach capacity again… and then teach them how to identify if they are falling back into overload in the future – so they can reset before it’s too late. It’s harder to come out of burnout than it is to prevent burnout in the first place.
And remember – remove ALL demands – even if you don’t see them as a demand, they may be absolutely detrimental to their health and wellbeing.