I have described Samantha as having pathological demand avoidance in several blogs now without really going into any details (sorry), so here is that blog where I explain as best as I can what we are living with and how it affects us.
The pda society describes it as: People with a PDA profile are driven to avoid everyday demands and expectations to an extreme extent. This demand avoidance is often (but according to some PDA adults, not always) accompanied by high levels of anxiety.
We all have times when we don’t want to do things and (most) autistic people have times when their anxiety is so high they demand avoid, “I can’t put my socks on because the sun is too bright”, but it is when it becomes over everyday things, all the time and over usually enjoyable/favourite things that it becomes pathological. It is not that they won’t do it, it is that they can’t.
Everyday demands for Samantha, like brushing her teeth, getting dressed, going to the park, increase her anxiety to a point where she goes into fight mode (fight or flight), she can become aggressive both verbally and physically and will struggle to ‘people’ for the rest of the day. It is not only unwanted tasks she ‘avoids’, Samantha can also find it impossible to accept a treat, a day out or praise, these all create anxiety which builds to where she is no longer able to function within society and has to retreat.
Samantha will be socially manipulative as a way of demand avoiding and when this doesn’t work she will switch to aggression. This is by no means a choice by her and this behaviour should be viewed as a panic attack, although granted in the moment when you are being punched, kicked and yelled at it can be very difficult.
It has gotten a little easier (emphasis on the little) as she has gotten older as she is able to express herself a little better and we have learnt to phrase things differently. We give her limited choices (not too many or she panics and shuts down), we don’t use the word ‘no’ but maybe another day, not right now, another time, whilst equally being careful never to lie to her as her trust is very fragile. If her anxiety is naturally high one day we keep demands low, if she doesn’t brush her teeth for a day, they won’t all fallout. If another day her anxiety starts low we may be able to increase demands a little and suggest she puts her clothes away in her room, it’s all about balance.
Our PDA child does not thrive on routine, she needs variety. What works one day probably will not work the next. Humour is our friend as long as she doesn’t think she is the one being laughed at, unless she is playing the class clown in which case she will be upset if you don’t laugh. She wants attention all the time but praise has to be limited and cannot be empty, it must have meaning and she must feel like she has made a difference.
Do not try reward charts/marble jars/naughty step or any of those other ‘wonderful’ nanny JoJo techniques, we tried them all and each and everyone blew up in our faces. Generally they will never work with children with PDA. Samantha has no concept of social hierarchy, she sees no difference between herself and adults or those in authority (again a common trait in those with PDA), this has on numerous occasions gotten her in trouble and no doubt will do so in the future. Samantha equally must be in control of all situations, if she feels she does not have total control anxiety rises to uncontrollable levels, again this is similar to many PDA children (at least of those children I have been in contact with or parents I have spoken to). PDA and the anxiety it brings is exhausting not only to us as parents but to the person who is experiencing it first hand.
Life with a PDA child is never boring, it can be exhausting, interesting, frustrating but never boring. You will need to be inventive, humorous, adaptive and patient but you will never be bored.
For more information on PDA please visit
national autism society: autism.org.uk
www.pdasociety.org.uk
