PDA: anxiety based demand avoidance or 'oppositional' and 'stubborn'?

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.

Let's make a deal - getting the job done

Yesterday I had the task of completing 3 assessments with a 6 year old boy. We only had an hour, so I needed to get it right. On a previous classroom visit I noticed him looking at a book about trains (mental note to self - he likes trains). When I walked in to get him, he was just starting quite a large jigsaw.

Uh-oh, I thought. This could take a while. I suggested we go to do some 'special' work, but he said, 'No, I need to do this jigsaw'. Hmmm, I thought, I need to think of something else. 'Why not bring your jigsaw with you? We can do it together. We could even see if we can find a train to play with.' It worked. He put the pieces back in the box and willingly came along the corridor. We chatted about transport on the way and he relaxed. 

First hurdle tackled successfully.... now for the assessments. Unfortunately, on reaching the room, he wanted to get back to the jigsaw straight away. My rather boring looking assessments just couldn't compete. So what next? Give up? Engage in a battle?

No. I used the 'Let's make a deal' strategy. Quite a verbal little boy, all he needed was a verbal approach (but you can make a it visual for children who learn best that way). 'Let's make a deal,' I said, 'Do 3 pages of my book and then we do 3 pieces of jigsaw, 3 more pages of the book then 3 more pieces of jigsaw,' and I held out my hand to shake on it. It worked! He liked the idea, and for the next 30 minutes we stuck religiously to the deal. He even jumped up after every 3rd jigsaw piece, keen to get on with the assessment. 

Why does this strategy work so well? Well, it allows the child an element of control. He doesn't have to give up what he wants to do completely. It is also quite an adult way of dealing with a situation. We do it all the time with other adults, e.g. 'I'll cook and you can wash up'. Children like to be treated like grown-ups. Another child I know will do anything for the chance to carry my fob and lanyard as it makes him feel special and in charge. We don't always have to be the 'teacher' telling them what to do.

Give it a go and see how you get on. I find it works well for most children, especially those on the autistic spectrum who both love being in control and have a special interest you can use as the deal maker.