TW: for psychological abuse of a minor.
I’m so triggered this morning. I have sleep phase disorder and a few other sleep disorders (along with being PDA and ADHD – which cause me to go to bed later and later and get up later and later) which requires me to wake up slowly.
In order to wake up gently, I check my emails in bed, then I do a quick check on my support groups to see if anyone is requiring help and then I might scroll if I’m feeling alright. Today was the wrong day to scroll.
I came across an Encopresis group that I don’t like; they are not neuroaffirming in any way whatsoever – but I remain in the group to try and help some of the poor children. I really need to just leave the group… but my justice-oriented autism says no – while my PTSD says LEAVE, LEAVE, LEAVE!
This morning there was a post by a parent who was gaslighting and demeaning their child. No, it wasn’t on purpose, no, they didn’t realise that’s what they were doing through their post, no they weren’t purposely trying to trigger anyone. That’s the problem with triggers – they are different for everyone, and no one knows what another person’s trigger will be. It’s incidental, but when it is incidentally harming their own child – I feel the need to educate, and I can’t let that go until I’ve at least tried to respond and educate.
The post talked about a child who was now 6 or 7, but I have seen very similar posts from parents stating the same thing – with 9- to 13-year-olds. This particular child in question has come ‘out’ to their parent. They have tearfully announced that they have been withholding (their own poop) by choice since the age of 2, and that they’d now like to stop withholding.
The parent then went to the community to tell them that for 4 years their child had a ‘behavioural problem’ – because they chose to hold their poop – that it wasn’t anything but ‘behavioural’ the whole time. Let’s put aside for a moment that a 2-year-old (let alone a 6-year-old) does not have the cognitive ability to understand the difference between choice, trauma, psychological issues, medical issues or anything else for that matter. Let’s just focus on the parent believing that a 2-year-old can decide these things (at 2) and continue that behaviour for 4 years… without it being psychological and ingrained – which by definition is not behaviour – it’s trauma/psychological.
This is when I was triggered. But… I dutifully read the responses to this total BS, just in case there was another reasonable adult in the room that had spoken reason (so I wouldn’t have to) – but, alas – no… it was all BS. Every response was a variation on – “yeah, that’s what my kid did too”, or “it’s always behavioural, withholding, not drinking enough water, the start of it is behavioural”. Which triggered me even further.
It is NOT BEHAVIOURAL!!!!!
Kids do well when they can…. Thank you Dr Ross Greene.
If it was behavioural (of an NT child) – then reward charts or punishments might have worked, or modelling, potty training, requesting they use the toilet, medication and timed sits would’ve worked within a couple WEEKS – not YEARS!!!! Kids are usually motivated by their love of their parents, and they do well when and if they can – because they’re kids….. they’re human. They are born with an inherent need to please their parents and to learn everything they possibly can… to love and to learn. When they don’t do this – that’s not behavioural – that’s a literal sign that something else is going on. Eg: they are neurodivergent, have a disability that is causing the incontinence, or they have trauma or something else.
A 2-year-old does not and cannot ‘decide’ or ‘choose’ to withhold poop for 4 years, and continue to do so- while their parents give them constant stool softeners and take them to OT’s and physios and paediatricians and GP’s and gastros etc etc etc – unless something else is going on. A 2-year-old just doesn’t have that sort of ability or reasoning.
This child had been withholding for 4 + years. That’s not behavioural – that’s psychological, medical and their co-occurring disabilities. Other children I’ve read about in that group did it for longer – between 4 and 10 years… or even longer…. Or even into adulthood! That’s not behavioural.
For something to be behavioural, it needs to be surface level. It needs to be for a personal gain, or usually (in an NT child) a simple exchange of reward or punishment undoes it. For it to be behavioural: it needs to be observable and not an internal issue… it needs to be controllable without having a psychological or medical reason.
Therefore, it’s NOT behavioural!!!
Observable & Measurable behaviour ….requires it not to be internal. Where incontinence is based in withholding of poop over long time periods- it’s internal – it usually starts with potty training the child before they are ready – it’s an internal thought process and emotional response to not being ready and becomes a psychological and subconscious need to hold. Or it starts with constipation and a hard poop that causes pain – which also causes the child to internalise the pain and then hold the poop to avoid the pain, this is a psychological need to hold to prevent pain – to ensure self-survival. Not behavioural! If it was behavioural, you could simply give the child some stool softeners and assure them it won’t hurt – and they’ll believe you and let go.
But because it’s psychological – based on trauma – the brain body perceives it as a threat and psychologically holds onto the poop and the trauma.
From Google -the difference between psychological and behavioural: “Trauma is a deep emotional or physical response to distressing events that changes how the brain perceives safety, resulting in survival-based coping mechanisms. Behavioural issues, conversely, are often viewed as goal-driven actions or habits, often addressed through incentives or consequences. Trauma causes behavior, while behavioural approaches may not address the underlying distress”
Eg: trauma caused the withholding, which caused the outward ‘perceived’ behaviour, but the individual will not be able to get rid of the behaviour until the underlying trauma is healed.
Or, if the incontinence is medical – it has nothing to do with choosing anything… as it’s out of the child’s control – and therefore not behavioural as well.
This (now) 6 year old has suddenly decided to ‘come out’ because something has changed. Usually it’s the perception of safety. The child perceives that is NOW safe to let go. To let go of the trauma – and therefore also let go of the poop. It wasn’t a ‘behavioural’ choice to stop doing it – it was a nervous system response to their own trauma and to their current environment.
Unfortunately, the parent involved has not recognised this and has assigned a reward chart to the child’s ‘behaviour’ around this issue… which is likely to cause the withholding to start again.
Why? Because the child’s nervous system- will again – see the reward/punishment as a threat. The child’s nervous system had just relaxed enough for them to let go. The only thing that reward charts do (thank you Alfie Kohn) is force more anxiety, more pressure, more demands and more nervous system dysregulation.
Our brains perceive the reward/punishment systems as threats.
We already know what we need to do, why and how…and our co-occurring disabilities know this as well, but get in the way, or send the wrong information and signals.
Eg: the comment about not drinking enough water is also not behavioural – it’s usually due to our ARFID, or our executive functioning, or our ADHD working memory issues forgetting, or our interoception lagging skills, or something else (like IBS or gastrointestinal issues). To blame this as behavioural is blaming the child – it’s telling the child that they are a broken NT, instead of a perfectly functioning ND person who requires adaptions and supports in this area – to blame it on behaviour is to deny the child’s disabilities, and the child’s very real experience of being disabled – it’s gaslighting and demeaning. (BTW: the now 6-year old’s parent said the child is ADHD – so yeah – not behavioural).
To blame the ADHD is not fair either – ADHD is how we think, express and experience everything – it’s part of us – inseparable from us – it’s part of our identity (if we didn’t have ADHD, we would be a totally different person, with a different personality, thoughts, feelings, emotions and everything else) – to blame the ADHD – is again – blaming the child for a ‘choice’… that they have no control over. It’d be like blaming a deaf child for not hearing… you can’t blame an ADHDer for forgetting. For forgetting to go to the toilet, or forgetting to drink water, or forgetting what that interoception signal means. You also can’t blame a child with trauma for reacting with trauma responses like flight/ fight/ freeze/ flop/ flex/ fawn etc. Withholding is a fight response. Fighting their own body to avoid pain or to maintain autonomy, or to learn at their own pace.
That’s also why rewards are seen as a threat – they are a threat to our autonomy and to our learning in a way that is developmentally appropriate to our brain/body experience and needs. Rewards deny that we have the right to learn and develop differently – they demand that we be normal for normal sake. But we aren’t normal, and never will be. You can’t reward the developmental differences out of us, you can’t reward us into being normal…. Because that’s not how we learn, behave or do anything.
Being ADHD or autistic is life long – rewarding/punishing that- denies that fact, but also ignores them as disabilities. It puts unnecessary and undue pressure on a child with atypical development, who will struggle with these issues for their entire lives.
I still struggle with these same issues as a person in their late 40’s. Rewarding them now, for being able in a moment – punishes their future self who will be unable at different moments and times in their life. It says – well done for being able right this second, but as soon as you are unable again (and believe me – they will be!) they will be punished and believe you don’t love them anymore. RSD is real in ADHDer’s. When they realise this simple truth, the crash will be longer and harder. I’ve seen it with adults with ADHD and incontinence issues… it leads to massive burnout, distrust of their fellow man and causes deep psychological trauma that is almost impossible to overcome.
When we are rewarded for being able – it sends the message that being able is good and that being unable is punishable – or wrong/ bad.
It’s a societal problem, not just a parental one. Society sees disability as something to punish, isolate, segregate and (most of all) to cure – All. The. Time.
Being ADHD and autistic is not curable (and it’s a part of who we are - forever)– so the ONLY possible message you send with saying it’s behavioural or rewarding being able – is that you hate your child and their disabilities. That you want to cure the child of being them.
You can cure or help some types of incontinence (if it’s not lifelong due to their disabilities, or medical etc), but as I repeat all the time – it has to be their choice, their control, and they need to feel safe and secure. They need to get rid of/ or support their trauma/PTSD/cPTSD, and accommodate themselves in any way they can and need.
But if you call it behavioural, you are denying them their truth – their existence and their experiences as real or valid. You are reducing them to a person that chooses to be disabled – instead of someone who was born disabled and is trying as hard as they can, in the life they were given. You are demeaning them, infantilising them and harming them and their mental health.
Please stop and help us to lift our voices – so they are heard, validated and believed. If you are not disabled, you have no idea how hurtful/harmful it is to us- for you (our loved ones) to assume and assign ‘behavioural’ to everything we do, think, feel and express.
This poor child (I’ve been referencing) probably ‘came out’ as it being behavioural – because that’s all they’ve ever been told it is – or heard from the adults in their life. That kind of message has already damaged that child irreparably (they already see themselves as broken – that’s obvious from the description of the event given by the parent) – that child was crying while telling their parent. A child who was doing it on purpose for years wouldn’t cry – but a child that had no choice or control and felt ashamed and guilt over it, would. A child who was/is disabled and had been denied that their disabilities were valid or perfectly normal/ or that they would be supported no matter what would cry. A child who felt their parents just wanted a normal child- would cry.
I don’t know that child, or the family….. but I do know what it’s like to be told off, to be told that everything is my fault, that if I just stopped doing X (being me) then the telling off would stop, that people would accept me, that society would accept me, that life would be easier – if I just wasn’t me anymore. Yeah – it’s makes you cry, it makes you suicidal, it makes you try harder, it makes you mask, it makes you hate yourself – but also not understand yourself. It makes you want that reward – but that reward only ever leads to burnout and hating yourself more when you can’t keep up the façade of ‘normal’ or ‘able’, or of not being me.
I hope that child one day finds someone who tells them that it’s alright to be them – that it’s alright to be disabled, that they will help them, before it’s too late.