By Heather L. E. McKay 18/09/2024
Today I’m starting a blog about incontinence in neurodivergent people. This blog is also shared in my private Facebook group: “Neurodivergence and Incontinence Support” if you need more support.
This blog is based on my book series: “Autism: The Big Book Set of Help!” specifically book 2 which has a huge section about incontinence, and even a mini booklet about helping parents to advocate for their ND incontinent children in schools. Book 2 is titled: “Co-occurring Disabilities”. Available from bookstores, libraries and Amazon: https://www.amazon.com/dp/B0DB6268PP
The topics I hope to cover in this blog series, in the near future, include: Sensory Processing Disorder and its role in toileting, Other Co-occurring Disabilities that may be affecting continence, Dissociation and Body Dysmorphia, Interoception and feeling the need to go, Habit forming for ADHD, Regression vs Burnout, PDA control and low demands, Poop Smearing, Trauma responses and Withholding, Infections and Medical issues, Hygiene and Motor skill development, ABA and other harmful behavioural techniques used in potty training, Differences between Medications, Tools to Support, Therapies and Support Networks, A Look at Controversial Methods, Eating Disorders and their role in Constipation Issues, Stress/Anxiety and inner monologue as a Contributing factor, Specialists and their roles, Continence is Not Behavioural, Routines Don’t Work for All, Transitions and Hyperfocus, and many more. Todays topic:
How Regression Vs Burnout Affects Incontinence
For autistic and ADHD people, burnout is a very real, often ever looming danger.
When we hit burnout (which can happen many times throughout our lives, and can last for any amount of time, sometimes years), we sometimes show signs of what neurotypical people sometimes call Regression.
Regression is defined as: “A return to a former or less developed state” (Oxford Languages). But when regression is talked about in terms of Neurodivergent (ND) people – it is often used as an insult, or to stigmatize the diagnoses. The misunderstanding behind our behaviour and our struggles is what causes outsiders to mislabel it as a ‘regression’.
What they are seeing is a person who ‘won’t’ do things that they used to do, or they may see it as a complete loss of brain/body cognition. They may attribute cause and affect in the wrong ways, or they may pathologize us, or blame our “autism” as the issue. Some even go so far as attributing blame to medications or other made-up / fanatical / myths or random things that actually have no bearing whatsoever. I will not go into those things here, (as they are highly offensive to ND people) other than to say that there has been no scientific proof that these things cause the behaviour or symptoms that ableist people believe, or use, to cause hate mongering, ableism, and to accelerate and intensify scare mongering. When you look at cause and affect properly, (from the disabled persons point of view); you quickly realise how harmful those beliefs are and what they do to the neurodivergent community.
What is really happening? We hit burnout, often because we have been doing too much (physical exhaustion), learning too much (overloading memory and neuron pathways) sensing too much (SPD), and experiencing (emoting too much – which can also sometimes be SPD related), and this is caused due to living in a world not built for us.
We can spend all day everyday masking and hiding our needs – either at work, at home, or at school. Most neurotypical (NT) people don’t understand just how much effort, energy, spoons (please google “Spoon Theory” by Christine Miserandino, if you are unfamiliar with this term), and emotional expenditure goes into masking and trying to fit into the NT world. Even deciphering what has been said or written to us is draining in the extreme.
NT and ND people have their own languages and cultures, and unfortunately ND people are expected to conform, accept and live in a culture and adapt to a language that mostly makes no sense to us. All day long we are translating NT communication into ND communication (so we can understand and process what others are saying/ doing/ wanting from us), and then translating it back into the NT communication style in order to communicate back to them. If we don’t do this, we’d never understand them or cope, and NT people would never understand us, or accept us, or help us.
ND people are the ones expected to do all the work in this society, but don’t get any of the recognition or understanding for how hard it is. And if we suddenly become UNable, or too exhausted from this process to keep up the mask and to continue in this vein – we are mislabeled as having ‘regressed’. We are blamed for ‘behavioural issues’, told we are unreasonably aggressive, we are ignored – or worse – we are ostracized, bullied, attacked, pathologized, put into toxic abusive ABA or PBS therapies to ‘fix us’ (in order to make us appear NT again – so we no longer fit under the heading of ‘regressed’), and /or we are intensely disliked or outright hated.
To explain the communication issues further: It’s like we’re in a new foreign country – Every Single Day for our entire lives and always have the responsibility of learning a new language, culture and rules every single day. As each new person we meet have their own body language, facial cues and ways of speaking and communicating. And if you are ADHD; you will most likely struggle with Habit Forming (which we’ll talk about another day). But Habit Forming doesn’t usually occur for ADHD’ers and we struggle to form neuro pathways that lead to the ease of doing just about anything, we will struggle with this for life – it’s truly exhausting. But it’s also not the half of it.
We also have to deal with the overabundance of information that we as ND people take in (on a minute-by-minute basis) compared to our NT peers. It has been proven that autistics (and some other neurodivergents) tend to take in way more information. We take in more sensations and feelings, notice more things, experience more, and therefore have more to process. This takes a toll on our brain/body wiring with every new day and every new week – until we can’t take in any more information. That’s when we hit burnout.
When we finally hit burnout, the only way for us to get out of it, is to stop the input (the taking in of information). We sometimes need to live like a mushroom- as my grandfather used to say. He’d say he loved to live in the dark and feed off bull$hit (just like a mushroom), he was ADHD and constantly needed all the lights turned off after about 3 or 4pm. No one was allowed to interrupt or talk, and he’d vegetate in front of the TV (hence the feeding off bull$hit). It was his way of staving off burnout on a daily basis, after his very strenuous workday, working for the army. This worked for him for most of his life, but sometimes even this wouldn’t help him, and he’d need more. More rest, more alone time, more nothingness.
Once you are unable to stave off burnout any longer (through using your tools and strategies like self-regulation and co-regulation)– you need harsher measures. We often need to remove all demands all together, stop doing anything at all, and calm and relax – to return our nervous systems to “system neutral”. We need to reset. We need to find a way to return to ‘our’ normal – whatever that looks like for us as individuals.
Regression is sometimes explained as unlearning everything you used to know -or even talked about like ‘being struck down by some terrible disease or affliction’. It is not either of these things! It is burnout, not a regression.
For autistic and ADHD people we have usually taken in too much information, pushed through our executive dysfunctioning and pushed ourselves passed our human ability to cope. And so, for a certain amount of time, we become UNable; depending on the individual and how long they were being exposed to toxic environments, or masking and/or taking in too much. The ability and knowledge to do those things is still there – it’s just that we CAN’T access it right now and are UNable to do it right now. Because our nervous systems are in overwhelm/overdrive and giving us “error” messages.
Once our systems reboot, we can usually access the information and the abilities again. But if we aren’t given the supports and tools to reboot – and forced to ‘keep trying’ we will sometimes never be able to access that calm nervous system again. Sometimes you might see this as an escalation of behaviours (eg: aggression or violence) or in shutdowns or meltdowns. These meltdowns are signals that we are still feeling pressure and still taking in too much information.
You could think of it like a computer; when we first hit burnout – we slow down, send error messages and ask to reboot, but if we aren’t given maintenance and the problem isn’t solved – sometimes we crash completely with the ‘blue screen of death’ – this is when you may see aggression or violence or complete shutdown (or a ‘regression’), because we have been pushed passed any sort of human ability to cope and we are using behaviour to non-verbally ‘scream’ “HELP ME!” “Please stop this incessant torture!”
Regression in very young children: some pathologists will say it’s a regression because the child never regained the ability to do those things after they exited burnout. Again, they’d be wrong. Mainly because any child that hasn’t used a skill for a long time (or they were very young when they learnt it) – will have no memory of it – as it wasn’t used for long enough to become long term memory, or not used enough to be committed to muscle memory, or they simply outgrew it. It’s not a ‘regression’; it’s a natural memory loss of something that was never in our long-term memory banks in the first place.
Think back as far as you can – many of us won’t be able to remember anything from before about the age of about 4, some may remember further back, and others will not remember things from later in life (eg: won’t remember things from before they started school or even later) – everyone’s different and remember different things, especially if trauma occurred, or if the memory is especially good, or especially bad – those memories tend to stay in our long-term memory. And for ND people, we often replay those things ad nauseum, and becomes completely cemented in our minds; which causes sleep issues and hinders other bodily functions like withholding (more about that another day). But generally, most adults or even younger children won’t remember a park that they used to visit as a toddler, or remember how they were potty trained, or remember the funny things their parents tell them they used to do or say.
So how could a toddler possibly be deemed as ‘regressed’, if they haven’t cemented the learning in the first place? They don’t, they are not ‘regressed’ at all - it’s just an offensive term used to insult the intelligence and abilities of some children – and to hideously presume incompetence. Regression is a term that is not usually used for NT children – it’s a pathologizing term used mostly with disabled children, which is a problem in itself. Just because they are unable today, does not mean that they will be unable tomorrow, or that they have ‘regressed’; there is usually always another explanation.
What has this all to do with continence? Sometimes parents/carers or well-meaning doctors will call it a regression, in hopes of describing (quickly and simply to other people) that the patient doesn’t know how to do something or is unable to do something – like using a toilet, usually because they don’t have the terminology of ‘burnout’ instead. Using the right terminology can help both the carer and the patient to identify the right issues and help to figure out how to move forward. Using the wrong terminology can limit us and make us look in the wrong direction and use the wrong tools and wrong support.
Using the word ‘regression’ can often make people think that the best option is to do more therapy, more toilet training, more everything – in order to ‘regain’ the skills they think are lost. They sometimes assume that ‘simply’ re-teaching how to do the thing is the answer. In the case of an autistic or perhaps ADHD person in burnout – this is the exact opposite of helpful – in fact (as I’ve said earlier) this will cause more problems and send them deeper into CAN’T! Deeper into burnout, and deeper into the abyss.
If you keep piling on more information and inputs – it sends the autistic or ND person further into burnout, and sometimes over and above burnout and into aggression and violence.
First signs of Burnout: Continence, eating, speaking, and hygiene are sometimes the very first things to stop, or the things that we ‘suddenly aren’t able to do anymore’ when we enter burnout. We may become situationally non-speaking. We may find food choices, cooking and eating -too much to handle – which can affect bowel and bladder functioning and lead to constipation, UTI’s and other issues. We usually stop bathing as frequently and doing daily hygiene tasks; because they are easiest to drop and often take way too many spoons to undertake and perform (this is not laziness or being ‘dirty’!!! It is simply CAN’T!).
Sometimes our neuro-networks stop working altogether, or sometimes they just send the wrong signals, or we interpret the signals the wrong way – as we are experiencing sensory overload and can’t decipher the pure unadulterated excruciating number of signals that are being sent to our brains to process. This often ends in interoception issues – where we can’t decide if we are hungry, tired, need to pee, are constipated, anxious, stressed, angry, in pain, sick – or anything else. All the feelings inside of us are tangled and messed up to the point of incomprehension.
To help: remove offensive sensory inputs that trigger them and instead add in sensory inputs and tools that calm and regulate them.
Let them sleep and rest as much as they need.
Remove obstacles and hindrances.
Remove all chores and obligations.
Sometimes it’s best to remove all therapy and demands of going anywhere or doing anything. But you can’t do all of this for the person; they need to decide what they need and don’t need, and how to do that. You can offer suggestions, but it has to be their decision. Eg: you cannot and should never take away anything that they find regulating (like screens or hobby’s), and you should never decide for them – whether they should go out or stay in, talk to someone or stay silent, or in the case of continence – use a continence aid or not use one.
Continence aids, such as nappies, diapers, liners, adult continence wear, commodes, urinals and other adaptive tools are considered disability tools by law! You must never interfere with or decide for a person; what disability aid is right for them. This comes under disability discrimination laws worldwide; as incontinence is deemed as a disability under the UNCRPD and most countries disability laws. You’ll usually find it under personal care or hygiene, and sometimes it’s mentioned as it’s own name – as incontinence – within the ACT or regulation governing the country you call home. No business, school or kinder is exempt from these laws, regulations and ACTs – continence is covered by all.
Conclusion for helping us: Basically, we need to vegetate (in the way that feels right for us as individuals) until our system resets. If this looks like a person who has given up school or work, is sleeping most of the day and using their books, art, computer, or phone to escape into when they’re awake – let them! In fact – Encourage them! And reassure them they are doing the right thing. If they feel any sort of self-guilt, pressure or feel they are disappointing the people around them – it will only help to keep them in burnout longer. We need to feel supported and loved while we try to regain self-love.
Because self-love is something else that disappears as we enter burnout, we don’t listen to our bodies or our brains that are trying to tell us to stop, to rest. And some of us don’t have the interoception skills in the first place to recognise that self-love isn’t there – and we don’t ever recognise those signs and signals that typical people take for granted. As we come out of burnout, we will need scaffolded gentle nurturing and teaching about how to recognise those cues next time to avoid falling back into burnout. But some of us may never learn to read those cues, I never have. And in this case, we may need a loved one (who knows us extremely well) to give us a gentle, but clear and direct, warning when we seem to be struggling again.
For personal hygiene, that includes toileting – make accommodations. Suggestions: Put a potty or commode (maybe a cheap one from the op shop) beside their bed or allow empty recyclable water bottles to be filled with urine or give the patient disposable or reusable continence wear if that’s what they want. Allow them to shower or bath when they have the energy. Make hygiene tasks easier or simpler. Get adaptable products like shampoo caps or hair powder (which makes the hair appear cleaner without the need for water or bathing), so they don’t need to wash their hair quite as often. Let them eat what they want when they’re hungry – don’t force mealtimes or certain foods, and don’t force sitting at a table with others – don’t force anything. Maybe get a communication booklet or messaging app, or visual communication board– where they can write down/point to their needs or wants – to remove the demand of having to use mouth words.
Talk to them – (only when they are calm and regulated, and preferably alone where they feel safe) ask them what they need/ want and assure them you will help them in any way possible. Maybe go into the conversation with a few suggestions and (pictures of) helpful tools that you think they might like or appreciate.
Check in on them sporadically if they want you to – but don’t hover and don’t push.
Perhaps take a break from therapies (if you have any) or school or work etc. Ask therapists if you can be put back on their waitlist till next year – to keep your options open. And never use behaviouralist or ABA/PBS techniques.
The quicker they rest, and the deeper the rest, - the quicker they become ABLE again. But the quicker they go back to old patterns of masking and ignoring self-love – the quicker they will return to burnout, and the likelihood of incontinence again. We all need love and care, but for a neurodivergent person in burnout – it’s more than need, more than essential and more than the difference between able and unable; it’s paramount and could be/ can be the difference between life and death.
Always remember to take care of yourself, as well as your loved ones.