Pathological Demand Avoidance is often met with mixed emotions by professionals. Some believe it doesn't exist. Others explain it as part of the autistic spectrum. Yet others argue it deserves a separate diagnosis that should be recognised in diagnostic criteria such as the DSM or ICD manuals.
Whatever you believe, I want to share my thoughts. Thoughts based on real life experiences of meeting young children in mainstream and special school settings; based on my trialling different approaches - and of course the responses I have had.
One young boy, probably 6 or 7, was in a mainstream school. He struggled so much in class that his school employed a teaching assistant to work 1 to 1 with him in a separate classroom. I went in to carry out a series of assessments. I was advised in advance it was difficult to instruct or direct him. So I went in the room and joined in with what was already going on. I gently and gradually unpacked my first assessment materials and went back to play. I then invited the adult to come over an have a look. After a while I started to 'test' the adult but we ensured she got things wrong. We then wondered out loud "I wonder if anyone else can help..." He came over immediately and before we knew it he was willingly completing the assessments. Eureka! I went back to the office and looked up advice and strategies but was disappointed to find only descriptions of this condition, not practical tips. I then typed up some ideas and sent them off with my report.
Roll on a couple of years and I am in a special school. I have worked with 2 or 3 young people who, although with more significant learning needs, also appear to have the same difficulty - coping with demands. Everything is great during relaxed, child-led play. Interaction is rewarding, language flows and there is a great sense of calm. But the minute you decide to take control and suggest going somewhere else or doing something else, it is a trigger for a very unhappy child who absolutely will not do as you say. No amount of bargaining or insistence seems to work. Autism friendly strategies such as countdowns, traffic lights and visual timetables don't seem to help much or at least not consistently.
So what do we do? I firmly believe that these are a group of people with very real anxiety disorders. Their anxiety levels get raised very quickly and very high whenever they feel control disappearing. The more demands placed on them, the worse the anxiety. It can spiral and spiral. So do we all get anxious from time to time. And when WE get anxious, we expect people around us to understand. We need people to be calm, to reassure us, to pamper us, to do things for us, to give us things we like, things that will help us relax. So, I figure, we really need to do the same for these children.
Approaches that are non-directive in nature include Intensive Interaction and Hanen. In my experience they really do work. And, once you have followed the child's lead there is no reason why you can't feed in language and education in a non-threatening way. Get in touch if you would like support with your child who has significant demand avoidance behaviours.
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