Managing Pathological Demand Avoidance requires different strategies to Autism. We have found that the best method, for us, is a no demand or low demand approach. But, as I’m sure you are aware, nothing is actually that simple. A no demand or low demand approach to PDA with siblings has its own challenges.
What is PDA?
So…..what is PDA? PDA stands for Pathological Demand Avoidance. It is an anxiety driven need to be in control and is characterised by the ‘pathological’ need to avoid everyday demands. It is important to remember that they are not refusing because they don’t want to do something, its that they CAN’T do it. Their anxiety prevents them. For a more detailed explanation please visit The PDA Society website.
It is a profile within the Autism Spectrum and there is a lot of publicity surrounding it at the moment. Those who are affected by it are trying to get it recognised within its own right and progress is being made but, unfortunately, it is a postcode lottery. Our Local Authority still do not recognise it so we have a diagnosis of Autism with Demand Avoidance Traits.
What is a no demand or low demand approach?
In a nutshell, it is about removing all demands, no matter how subtle. You have to let go of all expectations, ignore judgement from others and give the child a chance to work through their anxiety.
Our son is a twin. What we have found is that everything you have ever been taught, heard or read about being a good parent goes out the window when managing PDA. I have recently read the most amazing post by The Learning Curve in which this fact is highlighted perfectly!
Society says that you should treat your children in a certain way, that you should treat them equally, that you should treat them appropriately for their age.
But, what should you do when this just doesn’t work?
As a parent, you want nothing more than to do your best for your children.
You are told to put rules in place, impose boundaries and yes, in an ideal world, this would work but, in a world of PDA, this isn’t always the best approach.
A no demand or low demand approach to PDA with siblings
So, what is this post about? It’s about the effects of managing PDA on siblings.
We are so lucky with our daughter. She understands the stress that we are under and she does understand what we are trying to do to manage her brother but, she is still only 12 (nearly 13 lol).
Why should she go to bed when we tell her it’s bed time when we don’t tell her brother to go to bed?
If we don’t expect her brother to wash the dishes, why should she do them?
Why should she go to school when her brother doesn’t? (that’s another story!)
When her brother isn’t asked to put his things away, why should she tidy up after herself?
Why should she have a shower every night when her brother doesn’t?
This list is endless……
To the untrained eye, it would appear that we are treating her unfairly and that her brother is being allowed to do what he wants, when he wants. It is such a challenging balancing act and, if I’m honest, we do not always get it right! At the end of the day, we are human and we make mistakes. Unfortunately, PDA is not very forgiving……
I find myself over compensating in that I’m not always as strict as maybe I should be. Especially at the moment. She has dyslexia and we suspect ADHD, although this is undiagnosed, and she is finding senior school quite a challenge. She was a child that absolutely loved school. We struggled to get her to stay home when she was ill as she missed being there.
Unfortunately, the expectations and increased workload associated with senior school have meant that her coping strategies are no longer working. Maybe if we hadn’t been so focused on our son we would have noticed things sooner and started asking for help and support for her. But, before we knew it, her anxiety levels were so high that school refusal started creeping in to our lives again. School refusal is well established with our son for various reasons but we really didn’t expect it to happen with our daughter.
When you think about it though, she has become highly anxious and her brother wasn’t in school so why would she go? However, its a completely different situation and the reasons behind the refusal are not the same.
What do we see at home?
She is becoming very insular. It is not unusual for her to spend hours on end, on her own, in her room. She doesn’t really want to talk about the problems that she is experiencing. She has refused counselling because she just doesn’t want to talk. As a person who has to talk out her problems, this is quite hard for me to accept but, it’s her decision. It is becoming very difficult to give her quality mummy or daddy time. I feel very much like I am putting my son first but, unless we manage the behaviour, it has a huge impact on her. What we have to work out though is which has the greater impact: the PDA or lack of quality time?
She is finding the mornings particularly difficult. It is becoming increasingly more difficult for her to switch off at night and go to sleep and she has always needed her sleep. This is a child that would decide she was tired and put herself to bed. She wouldn’t wake up unless she had finished sleeping. It was always a running joke in our house that she would only wake up when she decided. No amount of noise would disturb her…..
Proud mummy story…..
One particular incident sticks in my mind. It was an occasion on which I cannot emphasise how proud of my son I was. I used to suffer from the most horrendous migraines. Unless you knew this fact, a lot of the time you could have been forgiven for thinking that I was having a stroke.
On this particular night my husband was working a night shift. The migraine started and it got to the stage where I had no option but to use my injection pain killer. Unfortunately, as was becoming increasingly more the norm, it didn’t work.
I was at home with my 2 kids and unable to function. My son, realising that mummy was very sick, called an ambulance. He followed the instructions, sorted the dog, unlocked the front door and looked for the ambulance. While all this was going on, my daughter, was sound asleep. The dog went mad when they arrived, 2 strangers came upstairs to me, were having a conversation with me (well……trying) and she did not stir. My son had the unenviable job of waking her up! No easy task.
I think what I am trying to say is that the effect of PDA on siblings should not be underestimated. It is easy to get caught up in the day to day battle of managing behaviour. Siblings need just as much time and support and we, as parents, must ensure that their needs are met. If they were different ages, we could use the argument that expectations would be different due to this difference but, being twins, we can’t use this to justify things to ourselves.
This is a huge topic and, to be honest, I’m not sure that I’ve done it justice here but I feel that it is something of which we must all be aware. Are you affected by this challenge and, if so, how do you deal with it?
Ok, I’m now off to grab a quick bit of ‘me-time’ with my planner. Until next time.