I have been coming across the diagnosis of pathological demand avoidance more and more lately. It was spoken about on a TV show I was watching about developmental disorders, a colleague mentioned it during a personal development dinner catch up and a parent queried it after reading an article about it. Like anything I am not completely familiar with, I researched it! My research told me that whilst this is not a formal diagnosis it refers to a label that is thought to be part of the autism spectrum. One of the defining characteristics is that an individual diagnosed with Autism Spectrum Disorder (ASD) uses avoidance tactics to avoid daily expectations or demands placed on them because of significant underlying anxiety and a need to stay in control.
This then presents as controlling and dominating behaviour, refusals, outbursts, meltdowns and aggression but essentially at the root of the defiance or meltdown lives a deep anxiety of losing control. I don’t think this is a new concept. Many parents, clinicians, teachers and friends are very aware that many children (and adults) on the autism spectrum live with significant anxiety and a need to stay in control. It can be crippling, it can be isolating, it can be excluding and it can limit participation in daily living. Furthermore, we also know that defiance or aggression is an external behaviour but that underneath this is often the internal emotion of anxiety (like an iceberg). Living with a higher level of arousal or anxiety is often part of living with an autism spectrum disorder, much the same as living with a sensory profile. My research did not lead me to believe this was a separate diagnosis to ASD but perhaps recognition of a subtype of ASD. It did get me thinking though about how we view and respond to defiance and/or aggression in individuals with ASD. It is no doubt challenging to manage such “big behaviour” and it is also challenging to manage that unpredictable response of swinging into a full blown meltdown in 2 seconds flat in response to what we see as a minute trigger or a simple request we have asked.
We have to stop and think about what the defiance, refusal and/or aggression is communicating. My number one rule as a Psychologist is that “behaviour is always communicating something.” Defiance and aggression is only surface level and so our question becomes what is under the surface of the defiance, aggression and refusal? It is indeed anxiety? Consider that defiance and aggression might be a camouflage, a mask and a way to protect self. Consider that it might be hiding the fact that ‘I am scared when I am not in control so I act out and fight to protect myself.’ Consider that this is a defensive mechanism and the only one they have right now as they have entered ‘fight’ mode. Considering this will change your understanding, approach and response to the behaviour.
If this is fitting a child you know I think it is important to meet them half way and to try and implement strategies of support such as:
• Can we offer more preparation and warning time when we are placing a demand or expectation on them?
• Can we use strategies that make this more of a predictable and familiar routine such as scheduling the daily tasks and using visual timers?
• Can we offer more visuals, checklists and cues to help with processing the demand and exactly what is expected?
• Can we break the task down into much smaller steps so it is processed as being more manageable?
• Can we change the way we present the task so it is less threatening and more of a proposal than a demand? e.g. “I think I can put my shoes on before you!”
• Can we use language that removes the pressure such as “when… then”
• Can we give some power and control back through using fixed choices? e.g. “do you want to pack up your toys now or after you have a bath?”
• Can we be more flexible ourselves and pick our battles?
• Can we build their understanding of anxiety and support their emotional vocabulary, tool box and awareness?
• Can we model remaining calm through our face, body and tone of voice when the peak of the meltdown explodes?
Sometimes simple changes in what we do or how we respond can make the biggest changes in your child’s behaviour! The key is always to try and work out “what is this behaviour communicating to me?”