By Heather L. E. McKay
Part One: ADHD / Autism and the brain/ body processing interference.
If you are neurodivergent, or have a family member who is ND, you are probably very aware of the high incidence and prevalence of co-occurring disabilities. Most of us will have at least one or many co-occurring disabilities or health issues that affect our day to day living. One of the most common co-occurring things is the likelihood of being both autistic and ADHD, but there are many combinations of co-occurring disabilities that can occur simultaneously. Examples of things that may (or may not) co-occur: Epileptic and diabetic, autistic with OCD, ADHD with Coeliac disease, Dyslexic with apraxia of speech, BPD with IBS, Tourettes with Lupus etc etc. Or you could recognise all of these disabilities in the one person. It’s actually uncommon for ND people to only experience one disability.
This Autistic/ ADHD combination (AuDHD) of neurotypes causes a constant struggle in our own brain/bodies. We can feel constantly at war with ourselves. I, myself, am both, and my constant struggle is real and sometimes even painful and completely debilitating. One side of me wants a routine (autistic side), but the other side hates routine (ADHD), but I also can’t do routines. One side likes everything put away, out of sight and neat and tidy (Autistic), but the other side forgets things exist if they’re not on display (object permanence/ADHD). One side wants reminders (ADHD) the other PDA side hates them and will run from them or purposely not do whatever the reminder is for, or my executive functioning side of my ADHD will just say: NOPE, hell no! I can’t do that today. One side wants to hyperfocus (autistic) the other side wants to do everything else first/ or nothing at all (ADHD). And the list literally can go on and on and on, indefinitely. It’s a constant struggle.
But how do these two neuro-diagnoses affect continence? Well… the answer is nuanced and complicated, but also can be fairly simple – depending on the person and the issue. Let’s delve a little deeper.
Toileting is a demand or interoception issue that my ADHD/PDA often doesn’t register until too late, or I actively fight it because I’m finally ‘in the zone’ (regulated and hyper-focussing) and actually doing something. This is when I CAN’T stop – because if I stop there’s no guarantee that I’ll ever get back to that ‘zone’. Executive functioning and focus are two things in an ADHD person that is fleeting and must be treasured. If we step away, even for a moment – the focus, the functioning, the ability and the motivation has gone. And that’s too much to give up – just to go pee. This is not a ‘behavioural’ issue, or a ‘laziness’ issue or even a “if we just got into the habit” type issue – this is a ‘can’t’ issue. So, we hold onto it, we sometimes cause our own UTI’s or other issues, because we are desperate to hold onto that functioning for just a little while longer, or we literally can’t feel it because we are so engrossed that our interoception skills and abilities just don’t work.
Someone who doesn’t experience or understand the ADHD mind/body will never fully comprehend why this is such an issue for us. I suppose I could explain it in different terms. Eg: Moving away to go and pee, while we’re focused and actually finally achieving something, is like robbing us, or like holding us down or being kidnapped- and being told we can never ever return, can never have our things back, and never see our families again, because that’s how it can feel in our mind/body experience.
We feel deeply and we know our own ability to do/or not do things. We know our limits and our struggles, and we know how hard it was to get to that point of focus in the first place. We know that once we’re out of the zone – it’s lost forever. Even if we do get some focus back again, it’ll never be the same. That previous zone is lost because the ‘zone’ has changed, even if it’s only slightly; our coffee’s now cold, we are now sitting differently, the chair is cooler to sit on. Our brains have moved on or passed where we were, and even people around us or near us have changed – they aren’t in the same place they were before we left, they’re not talking about the same thing. And the background has changed too – maybe a different song is playing, or the tv is on and has changed shows, or perhaps the lighting has changed because the sun has moved slightly and now shining and reflecting on a harsh surface that’s now affecting our SPD. This all plays into never returning to that hyperfocus – and that is sometimes physically painful to us.
To help with this, we need to take care of all of our bodily functions before we begin to hyperfocus. But hyperfocus is not something we can choose when or how or where it’s going to occur – it’s totally random and comes over us at the weirdest times and places. If this is the case, some of us are helped by medications like stimulants; but not all of us can take stimulants – some of us have strange reactions to them, or some of us experience barriers to being able to get a formal diagnosis and have to self-identify instead – and medications are not available to self-identified ADHD’ers – as they are controlled substances by law. And some of us don’t like the way we feel when we take certain medications, and therefore can’t take them.
Other ways to help: pause the game or TV or whatever is happening. And I mean whatever is happening – it can help to pause your conversation until they return, so they feel more ‘in the zone’ upon return. Be silent and don’t interfere – it has to be their choice or moment to go to the bathroom. For ADHD’ers whose brains move and transfer between topics constantly and at full pelt, it’s extremely hard to ‘press pause’ on our brain, we continue to run on our inner monologues (more about that below) even if we try to hit pause in order to get back to the same zone after a bathroom or food break. And if we pause (take a break) without pausing our brain properly it can cause transition issues and completely ruin the ‘zone’.
Inner Monologue, Visual Thinker and/ or Conceptualiser, or all Three
It’s fascinating to me that apparently the whole world is made up of people who don’t have an inner monologue running at full pelt, all day long. Yes, it’s apparently true that we don’t all think and process information in the same way. Some people have an inner monologue, their own voice, or what seems like someone else’s voice, or even their own voice that has an accent, or a deeper or higher tone, or some variation of a ‘voice’ (like a radio type announcer or other ‘voice’ replacement) – that runs all day long, without stopping or pausing. For me this ‘voice’ is mostly my own, but it does change accent depending on who I’m talking to, and that’s why not mimicking the person I’m talking to is almost impossible.
Other people don’t have an inner monologue – shocking I know! But they say they think more in forms of visuals, memories, or conceptualisation. Some people with Aphantasia or other co-occurring issues will say (if they don’t have a monologue) that they don’t visualise either– but instead more tend to conceptualise or build thoughts in other ways. And then there’s people who do all 3. How do I know? Because I’m the ‘all 3’ person, and so is one of my kids. My other kid says he only has the inner monologue at this stage, but perhaps that’ll change as he ages? I’m not sure, as I’m not an expert on this, but I do know my own experience and how my brain processing affects other parts of my life and ability to do things – like remember to eat, drink and use a toilet.
How does this affect toileting? Because most people who say they have an overactive monologue, also say that they can’t shut it off. And more importantly, when you can’t silence your constantly out of control running thoughts, you sometimes can’t recognise other bodily functions, like the need to pee or have a bowel motion.
ND people usually identify with this experience more than neurotypical people. We tend to be unable to get to sleep or stay asleep due to this unending monologue, and we tend to have more runaway thoughts, become depressed or have more anxiety than people that do not have these constant monologuing brains. Anxiety can lead to withholding and other continence problems, and the constant buzzing of thoughts and conversations in your head can become completely overwhelming and activate meltdowns and shutdowns as well. All of this leads to an overwhelmed neuro system that tends to shut off interoception – the way we feel our inner needs – like urinary needs or identifying thirst compared to hunger or anger. If we can’t shut off our brain/processing long enough to cue into our bodies – how will we identify the need to use a bathroom?
Some of the things we do to shut off our own brains: Some of us use escapism. We use tools like screens, video games, social media, reading, binge watching TV, or an intense hobby (called a ‘special interest’) etc. These things are incredibly helpful to shut off the inner monologue, even if only briefly, or to only quiet it a little, for a short time.
I know if I’m binge watching something – the degree to which my monologue shuts down depends on the amount of distraction and enjoyment I’m getting from the particular show. Eg: if it’s a boring show – my monologue doesn’t shut off at all, if it’s a frustrating show my monologue increases, if it’s an exciting, or complicated, or very funny show – my monologue can almost shut down entirely. So, I only ever try to immerse in things that are highly entertaining and stimulating– when I’m needing to calm my neuro-system and regulate.
This can be the reason why so many of us rely on what NT’s sometimes wrongly call addictive things like video games. Because they are the only thing that actually shuts down that monologue and allows us to regulate our systems. Don’t take this lightly!!!! If it’s the only thing that works for that ND person – it’s a need and a disability tool – not an “addiction”, and it’s not ‘unhealthy’ – it is literally providing the person with a chance to finally calm their nervous systems because their brains are finally silenced, even if only momentarily. We need that silence to cue back into our brain/body systems.
We use these (sometimes wrongly called) ‘highly stimulating tools’ because they are not ‘highly stimulating’ in the same way they are used or seen by NT’s. Sometimes we use them to get out of the dreaded ‘under-stimulation’ trap that is just as dysregulating as a constantly monologuing brain. But most of the time, those of us with overactive monologues use them as decompression devices, to relax and to destress, and to shut off our monologues and return to a state where we can read our body cues again. We literally need them to be able again. It may seem counterintuitive to a typical person who does not understand our brain/body experiences, but to us, it is common sense, and the only way to calm our minds and slow them down long enough to link back into our bodies.
If you see a person who is dysregulated after being on a device or doing a hobby for a while – it’s often for a couple of differing reasons.
- they are cueing back into their body – and they are finally registering other things, like hunger, needing to pee, too hot, too cold etc. OR,
- it’s because they haven’t had enough time to regulate and are still struggling to shut off that inner monologue, OR
- the thing they chose to do today (to shut off that inner monologue, or to try to regulate) just isn’t working like it did yesterday or last week – they’ll likely need to change the game, book, activity, or to find something more/ or less intense depending on the changing needs of their brain/body in the moment.
You’ll also probably need to use Dr Ross Greene’s “CPS” method, or Mona Delahooke’s “Beyond Behaviours” techniques to try to figure out what is going on for that person. The device is not the issue – it’s either one of the above, or that their brain/body experience needs something more or different to help it, because they are probably more dysregulated than the last time that tool worked for them. The same method of regulating won’t work every single time, because every experience of overwhelm is different and needs a different outlet/ tool/ support.
More about regulation tools and the interference or removal of those tools in another blog later in this series.
Part Two: Other co-occurring issues that affect continence
What else affects continence: There are so many other co-occurring disabilities that can affect continence, some include (but not limited to): Fibromyalgia, Diabetes, ARFID (or other eating disorders), medications and supplements, Coeliac disease, Cancer and its treatments, EDS, Misophonia, Misokinesia and Kinaesthesia, SPD, Motor Disinhibition, Some Sleep Disorders, GAD, OCD, DCD, POTS, Epilepsy (and sometimes its treatment), Dysgraphia, Interoception issues or Synaesthesia, (or sometimes even struggles with identifying your body within space can also affect continence or toileting), GDD, Autonomic Dysfunction, BPD (and its treatment), Hyperphagia, Raynaud’s Phenomenon, Digestive Issues and many more.
To help – you must first know or identify all the co-occurring disabilities and look at them individually and figure out how to help with each individual thing. If a person is Intersectionally disabled (has many of these co-occurring disabilities), continence and toileting become even harder to predict or to help.
Each one of the above-mentioned disabilities need a different approach, a different tool or support or accommodation.
Example 1: for GDD the child may need time and patience and lots of scaffolded learning, routines and visuals to help them process and learn, but if they have co-occurring ADHD or PDA – the learning will need to be approached in a fun way that meets their interests and needs, perhaps body doubled, and performed in a non-demanding way, using a mixture of declarative and other language formats, and without a set routine, with adaptive tools, and with the knowledge that it may never become a ‘habit’ (more about that in another blog). Sounds difficult right? It can be done, but if you don’t know all the co-occurring disabilities, the way you approach toileting will backfire and can lead to worse issues like withholding, smearing or even self-injurious behaviours.
Example 2: For someone with POTS, they may need a wheelchair and assistive tools in the bathroom to help move from wheelchair to toilet. For Diabetes or Epilepsy they will need specialist medical care and diet, and possibly a carer or support person, and maybe support tools or adaptive equipment – depending on the individual. For ARFID they will need lowered demands, free access to their safe foods, and possibly some good supplements to keep constipation at bay and to supplement their diet, and possibly reminders or something fun that can encourage/remind them to stay hydrated. But if you use ABA/PBS or other behavioural tools to help do this, they are more likely to experience trauma, cPTSD, and possibly a ‘regression’ (as discussed in blog one).
For Motor Disinhibition, Dysgraphia, or ‘your body in space’, Autonomic dysfunction, EDS and a few others – you may need a neuroaffirming Occupational Therapist or Physiotherapist that can help build muscle tone or fine and gross motor skills, or to help identify tools or supports that could help, or perhaps someone to come to your home/school or office to recommend changes to the environment/toilet or recommend access changes that’s suitable for your unique needs. But if you don’t know about a co-occurring disability like APD or poor memory, and the therapist only gives instructions and therapy orally – you may miss vital information, and possibly remain unable, and incontinent. You, and your therapist must know about all of your co-occurring disabilities and understand how to help you with all of those things. If one disability is missed or overlooked, or if a therapist doesn’t understand the disability or the need; then it is likely that the help needed won’t be fully transferred or received in the appropriate manner.
Some medications and supplements can actually make continence more difficult. Some ADHD meds can act as an appetite suppressant which can have a knock-on effect for those with eating disorders and who are already struggling to eat or drink enough – or eat the right things to prevent constipation. Some supplements cause constipation, and some other medications can cause drowsiness or can actually make us dissociate from our abilities to recognise bodily functions and needs. And some constipation medications (stool softeners or stimulants) can make anxiety and OCD increase, as well as cause a worsening of PDA and withholding. Be very sure of co-occurring disabilities that will make conditions like constipation worse and actually force people to stop taking vital medications. Always consult a medical professional, but make sure that the doctor you consult has all the relevant information, but also takes your co-occurring disabilities seriously and listens to you. How you are treated will come down to privilege and the services available in your area, but please remember that you are worthy of respect and proper treatment. A doctor that doesn’t listen is not a good doctor.
Transitions for disabled people:
Remove any barriers to toileting and make it as simple and quick as possible. Talk to the person and find adaptable tools, clothing or options that they may benefit from or like. Things like toilet seat warmers or low lighting in bathrooms can lessen the extreme SPD transitions from one room to another. If we have less sensory changes when transitioning, it can help to keep us in a more likely possibility to stay in the ‘zone’ – talked about in part one.
A very important part about transitions from one room to another is that this causes a loss of memory for (apparently) all people, but especially for disabled people with co-occurring memory disabilities. This phenomenon was discussed on the British TV show QI with Stephen Fry. The idea is that when any person – (you don’t need to be ND for this to occur) crosses a threshold, you transition from one thought to a new thought of being in a new room. And this causes the loss of the previous thought that was with you in the previous room.
Eg: you transition into another room to look for your keys that you’ve misplaced, but once you reach the other room, you forget why you entered the room. To regain the information/ or thought process that you lost – you must re-enter the previous room to retrace your steps and regain the thought. The next time you re-enter the room to look for the keys, you purposely try to hold onto the thought as you cross the rooms threshold. This time you achieve the goal of remembering to find the keys, but for ADHD’ers or people with memory loss, brain injuries or other co-occurring disabilities – this isn’t so simple.
For NT people they can usually retrace their steps and regain that focus – simple - easy. For a person with a memory disability (perhaps Alzheimer’s or Dementia) they may never regain that thought by retracing their steps. And for an ADHD’er, we will usually have our own brain/ inner monologue distracting us down a new pathway, let alone when we transition from room to room and find something else to distract us as we re-enter (transition) each room, which sets us on a never ending loop of seeing something else that needs to be done, or that we’d forgotten about – and we will continue to loop the house, school, or workplace until we finally regain the original thought. Both the room transition and inner monologue set us on a new never ending thought and transition loop.
This returns me to “the zone” metaphor you read about in part one. If we transition from room to room, we have lost the hyper-focus and will not be able to get it back – just like I did with this blog. I lost my focus on this blog because I had to tend to the kids, do the washing, have a meeting, take a phone call and of course – go to the bathroom, or go and eat something. In going from ‘the zone’, into transitioning from room to room and back to this blog I have lost all focus, and it’s killing me, and probably you the reader. But I’m leaving it like this to prove a point, but I do apologise for the disjointed thought patterns of this topic. Once we lose that original focus by having to transition to use a bathroom (or do whatever else), we lose all functionality and sanity, we lose clarity and regulation, we lose our ability – and it’s painful to us.
A job or task that could’ve taken us an hour while hyper-focussing– then takes 5 hours or even 2 days - and is way worse and sometimes becomes nonsensical, if we lose that focus through having to transition. It’s incredibly frustrating and makes us resentful of having to listen to our bodies, or resentful of others if we are interrupted. My kids have interrupted me more than a dozen times while writing this, and I had more than one meltdown. I’m not medicated for my ADHD, and at this point wish I was. But remember that medication, being about to focus or to transition is a huge privilege. And your incontinent loved one, student, or patient probably doesn’t have the privilege that you think or assume they have. Please be kind and recognise your own privilege and ability to do a thing that others may not be able to do with anywhere near the same ease, ability, or grace.
We need your support – the people in our lives – to help us to minimise the number of transitions we have per day, so we can function and reduce stress and the complexity in our lives – so we can enjoy our lives better and hopefully function better.
Schools, places of employment and schedules: Schools and some workplaces are highly scheduled for pee/toilet breaks. And if you understood all of the above about hyper-focussing and being in the zone (or about our hatred for routine or being interrupted)– you may immediately catch on to why schools or some businesses aren’t built for ND people with continence issues. We need to be allowed to use a toilet at our own convenience- not someone else’s idea of when is the right time. Someone else’s idea of a toilet schedule will not work with your own bodily functions and needs. Their schedule is highly likely to interfere with your natural hyper-focus rhythm and ability to stop focussing when asked. It’s often ableist to expect someone to do something just because you said so – or because that’s the time or place that everyone else does that thing. Disabled people don’t work like that. That’s where you’ll need an IEP for a school, and an accommodation for a workplace – to be able to decide when and where is right for you to use a toilet / or continence tool/aide.
Other Things; like misophonia, SPD, or executive dysfunction can make toileting or hygiene tasks almost impossible for some of us. Hearing hand dryers going off, or the person in the next stall, or experiencing the smells and appearance and sensations of a public, or even our own home toilets are sometimes too much for us to handle – or be ABLE. Many of us will hold onto a bodily function until we feel safe and secure, in an environment that isn’t too overwhelming or full of sensory nightmares – and that’s logical and ‘normal’ for us. We need to be supported in doing this, as it isn’t a choice – it’s a point of literally can’t. Those places and spaces are not safe for someone with sensory avoidant needs, and that’s ok – not all spaces are safe for all people.
When it comes to gut issues (GORD or IBS etc), withholding, Coeliac and medications that cause unpredictable bowel movements (like stimulants or stool softeners) – it comes down to self-love, diet, trying to control other things in your life- so you feel safer or more adjusted and balanced within the other areas of your life. You need to feel safe in being able to take time off school or work until you get back to your ‘normal’, and giving yourself the grace and self-respect to realise that some things are out of your control – and that sucks – but there are ways to support yourself, and even the law is on your side. Don’t ever forget that what you have is a disability (or multiple disabilities) and you are covered by disability law. That law is there to help you to live in an often unkind and unforgiving world, and there are others out there, just like you – dealing with the same, or similar things; and we are here to help and support you – not just with solidarity and an arm to cry on, but with support tools, information and more help. Reach out to us – we’re here waiting. Don’t let anyone ever gaslight you and/or your disability or tell you that you aren’t trying hard enough or that ‘others can do it- you’re just lazy’. Continence is a disability! Full STOP!