Myth Busters Friday #2

As some of you know, PanKwake has a sub-type of autism, Pathological Demand Avoidance or PDA, that is not ‘officially’ recognized nor widely understood. As you may also know, the only experts this parent listens too…other than the best, PanKwake herself…is the #ActuallyAutistic especially those with PDA.

This second myth busters Friday we are lucky to be joined by Riko Ryuki, an adult PDAer. Please check out Riko’s Blog: PDA and More.

PDA people are not ‘just naughty children’.

Since learning about PDA I have heard many people saying how PDA is just an excuse for ‘naughty children’ to just do whatever they want or not do something. This annoys me for two main reasons.

1 – PDAers are not just children, we are adults too. PDA kids become PDA adults. Saying PDA is just an excuse for naughty kids completely ignores the very real struggles of adults. It also shows how easily labelled children are, you wouldn’t say a PDA adult is just a naughty person, yet adults are far more able to act ‘naughty’ than children, since most children are still learning how to control their own actions. Attributing a label such as naughty, without any consideration for how they might be struggling, blatantly ignores the difficulties associated with their age.

2 – PDA behaviour is not ‘naughty behaviour’. All behaviour is communication. If a child is acting ‘naughty’ then there is a reason why they are acting that way, it should be our job as adults to understand that children don’t act in negative ways for no reason. If we are their parents/guardians/teachers/doctors/ect then it is our job to look past the behaviour and figure out what the cause is, then we can work with the child to help them act in more appropriate ways. If we are friends/family/bystanders/general public then it is our job to trust those who care for the child, trust that they are doing their best to help the child with their difficulties. It is not our job, regardless of our relationship with the child, to label the child as simply being ‘naughty’ without any consideration of the child’s needs and disabilities.

PDAers want to do well. Kids do well when they can. If a PDAer is not doing well then they do not have the ability to do well at this moment in time. The difficulty with PDA is that Demand Avoidance in PDA affects nearly every single thing we want/need to do. From doing school work, following instructions and meeting our bodies needs (such as eating and breathing) to doing hobbies and having fun. The last ones are important in highlighting not only how much Demand Avoidance affects PDAers but also in showing just how little control PDAers have over their own actions. PDAers often cannot do the things they want to do. Any typical child who is showing refusal behaviour would only show refusal behaviour with the things they don’t want to do, PDA is different in that refusal covers everything including the things they want to do most. In fact, it can be even harder to do the things we want to do then the things we don’t want to do. If PDAers were simply ‘naughty’ then there would be no avoidance of hobbies and interests. You wouldn’t see them unable to attend parties and trips out that they really, really want to go on. You wouldn’t see them unable to eat their favourite foods for no reason other than ‘it’s a Demand’. 

Demand Avoidance comes in many forms, often the children needing the most help are the ones who ‘ask’ for it in the hardest of ways. Demand Avoidance causes so much anxiety and fear that this builds onto their behaviours so they end up showing the worst behaviours simply because they are unable to express their negative emotions any other way. This, to the uneducated, looks like ‘bad behaviour’, when in fact, it is simply a child trying to ask for help in the only way they have available to them to do so. 

The worst thing about all this is that if it were simply ‘bad behaviour’ because the child just didn’t want to ‘behave’ then there wouldn’t be any lasting emotional and mental damage. But take into consideration a child who wants so badly to behave, yet simply cannot no matter how hard they try, who is then punished and told they are ‘not trying hard enough to be good’ or are ‘being bad on purpose’. It’s truly heartbreaking to be trying so hard and yet to only be met with negative responses. To be in such dire need of help to only have everyone around you telling you it’s your own fault. 

Labelling a child as ‘badly behaved’ or saying that their disability is ‘just an excuse for bad behaviour’ can cause lasting damage. Sticks and stones may break my bones, but verbal scars run deeper. 

So please, think before you label a child as ‘bad’ or say their diagnosis is ‘an excuse for bad behaviour’.

It’s not an excuse, it’s a reason!