PDA – a profile of autism needing a different approach.
There’s a profile of autism which is not so very well known and is widely misunderstood. It’s called PDA - Pathological Demand Avoidance. It’s also often unofficially talked about as a Pervasive Desire for Autonomy because demand avoidance is very definitely only part of the picture. You may wonder why, now that the whole spectrum of autism is grouped under the umbrella of ASD/ASC/Autism does PDA need to be the exception? Well it matters because the ways that families, teachers, therapists and caseworkers can effectively support children and adults with PDA are different to those which are helpful for most autistic people. In fact sometimes when traditional support strategies for autism are used with a PDAer it can actually make life harder rather than easier for them.
A PDA profile of autism means that individuals are autistic with social communication differences and “restricted and repetitive patterns” of behaviour, activities or interests and often have sensory processing differences, though how these present may look different to what most people expect to see from an autistic person. They also:
have a need for control which is often anxiety related
are driven to avoid everyday demands and expectations (including things that they want to do or enjoy) to an extreme extent
tend to use approaches that are ‘social in nature’ in order to avoid demands
present with many of these ‘key features’ of PDA rather than just one or two
tend not to respond to conventional parenting, teaching or support approaches
People with the PDA profile, or PDAers, find it difficult and sometimes utterly impossible to meet the ordinary everyday expectations and demands of life. They might first avoid demands by using social strategies such as making excuses, negotiating, deflecting the subject or using humour to distract. If that doesn’t allow them to escape the demand, their stress and distress will increase and their strategies to avoid the demands will notch up a gear. They may shout or swear and say mean things or concoct elaborate reasons as to why they cannot possibly do The Thing. For some, the more explosive responses are internalised and for others they are very obvious. If the demand still presents itself a PDAer may meltdown or shutdown and sometimes people can get hurt or things damaged. Meltdowns and Shutdowns are best thought of as panic attacks and they are beyond the level of conscious control.
The hard bit to get your head around is that it isn’t the activity (The Thing) which a PDAer is avoiding, it is the demand (or expectation) to do The Thing which is what their entire body and brain is telling them that they cannot possibly do. So for example it is not a fear of maths but the expectation that maths tasks must be done and completed which is the problem. In fact maths may be something that the PDAer likes, enjoys and has done before but their PDA demand avoidance is stopping them from doing this maths task at this time simply because it is being asked of them. And to further complicate things the expectation/demand may come from within, eg “I must succeed at maths” or “I must get this maths task perfect”.
There is as I mentioned, so much more to PDA than just this demand avoidance. There’s the need for autonomy (often seen as “controlling” behaviour), which is often due to extreme anxiety. There’s a difference in perception of time itself and a blindness to hierarchy. Our PDAers are Pretty Darned Awesome when their distress levels are low and their autonomy is high, often surprising us with their perception, knowledge and wit. Many find school to be intolerable and need a completely different approach to education, yet they may crave the social connections that school provides even while they cannot cope with the reality of being at school every day. Some PDAers manage to hide or “mask” their distress for years until suddenly they cannot anymore and they fall headlong into a mental health crisis.
I am mother to a child with the PDA profile of autism and I have been fortunate to have the most amazing PDA specific support group available to me through Express CIC. I came to the support group when our family was in crisis and now, several years later I feel privileged to be the PDA lead volunteer for Express. I host monthly support meetings on Zoom and we have a very active and supportive WhatsApp Group for parents and carers to a child with PDA or suspected PDA where we discuss all things PDA. If reading this has prompted you to realise that your child may have PDA, do get in touch with Express and ask to join the support group.