Thread by @autgeek

So I've been thinking about this for a while now and I'd like to share my thoughts on the language we use, and how we think about, "challenging behaviour" (CB). I'd like to replace the term with Distressed Behaviour (DB)

For me the change from CB to 'behaviour that challenges', while welcome, doesn't go far enough. It also requires some clunky linguistic gymnastics to say. I think we can do better.

CB is usually defined as "Culturally abnormal behaviour(s) of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit use of, or result in the person...

...being denied access to , ordinary community facilities!" (Emerson) I'm pretty happy with this definition, particularly as it expands on the lay understanding of CB as something that causes physical harm to include things which can create social barriers.

However I do feel the focus of this is on the effect of the behaviour on others rather than how it feels to the individual who is experiencing it.

I think it's fairly self evident that the things most people consider as CB e.g. hitting, swearing, spitting, destruction of property, are not the actions of contented, well supported people.

I'd argue that even when people clearly enjoy doing these things it should still be seen as a sign that they need better support, not judgement, not being written of as 'bad' people (often as kids) because they are inherently bad. This behaviour is distressed, not challenging.

However I've been asking myself whether every form of CB could be framed in terms of distress and I think it can. Behaviour such as harmful sexual behaviour is not the action of someone who has been supported to satisfy the natural sexual needs that most people experience.

Another form of DB that might look fun is hyperactivity or poor impulse control, yes in the moment it could feel great but when considered in terms of the impact it has on the individual's ability to participate in community facilities etc we're straight back to distress.

I think there's a danger of confusing the short term excitement of hyperactivity with someone who has a good quality of life.
(PSA hyperactivity isn't limited to kids, adults can get hyperactive too)

What about sensory related behaviour? If someone enjoys it how can it be distressed? Like many #ActuallyAutistic people I would defend our right to stim. Stimming is not of itself distressed no matter what some approached to 'treating' autism may say...

...or do to try to make people conform to bizarre normative standards of 'socially appropriate' behaviour. Not all stimming is joyful but may be a response to distress or create barriers.

Someone who does nothing but stim will have increased difficulty accessing opportunities like education or building relationships - I accept there's an assumption here that these things are desirable.

I think it's also important to mention that not all stimming is healthy, see more on this in this excellent blog: kirstenlindsmith.wordpress.com/2016/02/05/the…

So for sensory behaviour I would still argue that this is distressed behaviour when the person's sensory needs are not being met in a way that still enables them to access community facilities.

What about behaviour that is attention seeking? I think we need to stop talking about attention like it's a terrible thing to want. Most of us want attention from others at regular intervals, this is a basic human need not some craven desire. Some of us need more than others.

Again, if someone is needing to behave in ways others consider challenging in order to access attention this shows they are not getting the level of attention they need, this is distress. This is why we have laws to protect people from neglect.

One of my bugbears is the trend of describing behaviour as communication. As soon as we say it is communication we are assuming that the person has communicative intent. We often do this even when the rest of the time we recognise that their communication skills are limited.

Sure, it can be useful to consider what the person may be trying to tell you but behaviour as communication suggests that DISTRESSED behaviour is a deliberate, conscious, even malicious act.

Meltdowns are separable from tantrums in that they are not an attempt to influence another person. See ollibean.com/autistic-meltd… and autspot.net/2016/02/13/mel…

To paraphrase a lecture by @JillBradshaw13 , when we say behaviour is communication we only think in terms of the behaviour being 'in order to...' and so we overlook the possibility that it is actually 'because of...'

We're back to seeing the impact on others and overlooking the distress of the individual. A person does not have to understand the impact of their actions in order to protest their distress - a simple example (in no way infantilising anyone else) is that a young baby...

...does not think through 'I am going to cry now so I get fed', rather a baby experiences the distress of hunger and cries in response to this.

I'm not saying we shouldn't empathise with people who support those experiencing distressed behaviour. I'm not saying this isn't extremely traumatic for those who get caught in the crossfire of explosive distress, particularly families who do not have the luxury of choosing...

...not to be impacted by this.
I will say however, as someone who has had an continues to have messy meltdowns as well as caring for others in similar distress, ime as frightening and downright heartbreaking as is can be on the outside looking in...

...it is always worse for the person who is experiencing the emotional tsunami.

So how should we describe distressed behaviour? Is it something someone suffers from? Should it be seen as a condition somone 'has'? I think it's best described in terms of being experiential, I'd say the person experiences distressed behaviour.

I'm not trying to argue that anyone should be exonerated from the consequences of their actions. I would argue however that when the individual is neurodivergent and thus disenfranchised by a society not generally designed by or for us, there's always an element of distressed...

...behaviour which could be seen in terms of the individual being failed.

Why does any of this matter? I think if we change the way we think about distressed behaviour to make it more person centred this will impact on how we support those people. I think greater empathy could reduce the mental health impact of being considered 'challenging'.

Trying to counteract the narrative that was constant through my childhood, that I was naughty, bad, a monster, like Jekyll and Hyde is still a work in progress for me and many other autistic adults. I wasn't trying to challenge, I was in distress. I wish people had known that.