Pathological Demand Disorder

My child’s tantrums weren’t  normal

When Morgan, my 7 year old son, is in his calm state he is ‘angelic’, calm, eloquent, charming and funny. But, we had serious concerns about him – his social behaviour, lack of interest in his peers, his approach to food – binging then eating nothing.  Yet during GP appointments he behaved perfectly.
No one believed my worries – I was in despair!
But, a break though came when during one consultation Morgan was in an anxious state. Morgan hit his little brother full in the face with a metal toy, kicked him in the stomach and when I tried to intervene he hit me several times all in front of the consultant.
It was so very sad to see my little boy acting like this, but it was also a huge relief.
It seemed at last someone had seen a glimpse of this ‘other side’ which was NOT a normal tantrum or normal battle of wills – it was suggested he had possible Pathological Demand Avoidance Syndrome (PDA), which can be managed.

Previously I had written a lengthy letter to the NHS detailing all the worries I had.  Then, finally a consultant actually witnessed Morgan’s worrying behaviour - and now Morgan is currently undergoing the diagnosis process for possible Pathological Demand Avoidance (PDA) or other Autistic Spectrum Disorder (ASD).

Doctors and consultants frequently comment that Morgan is engaging, exceptionally bright, funny and so on… yet he isn’t like this with his peers. He still plays alongside his peers rather than with, he has to play on ‘his terms’.

For  example, at his request I invited two friends over for a play date but when they arrived Morgan wanted them to watch him play on the computer. When they refused, the guests ended up playing together whilst Morgan stayed in his room unable to adapt or join in. Other areas of concern were: Morgan’s flapping of arms, standing on tip toes, fixation of numbers, anxiety and tantrums at being out of routine, very controlling – has to have things ‘his way’, inability to understand boundaries e.g. difference between being adult and child – he often sees himself in the supervisor role, policing other children and adults.

It worries me whilst at age 7 children tolerate this I am worried they will bully him in the future as he ‘tells tales’ and complains if they break the rules. 

He refers to his own sense of ‘oddness’ and is highly sensitive to sound and smell.  Morgan also has periods of eating almost nothing and then periods of consuming vast amounts of food. He has meltdowns if the wrong number bus arrives or if you say something will happen at 11am and you are not ready until 11.15!

It first seemed that because Morgan was so eloquent and clearly intelligent the doctors had no worries about him. At age 7 years and 5 months his reading age was 12 years and 9 months.
I was (and still am) worried  about the implications of his behaviours as he grows older and other children start to ‘see’ him as different – as a secondary school teacher  I have seen first-hand the damage that can be done by bullying

I don’t think ‘chasing’ a diagnosis is important. We don’t want to label Morgan with something but to create understanding.  We needed help so we could help him.

It was after the appointment when Morgan demonstrated violence that the consultant Paediatrician first suggested looking into Pathological Demand Avoidance Syndrome (PDA). I was advised to look on the National Autistic Society website as PDA is on there.

The consultant also advised Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals by Phil Christie (Available on Amazon and on KINDLE)

As I began to read this book it was like a million light bulbs going off inside my head. 

I wrote to the consultant who made these suggestions, thanking her and saying: “I do feel a sense of hope; and yesterday I felt almost a sense of freedom.  To think of all these times I have seen that little boy struggle and be left feeling so totally helpless and inadequate to help him.  Now at least there are strategies there to read about and look at, support is there to help him grow and be the person he can be… the sense of relief is enormous.”

PDA is recognised by the avoidance of demands made by others.

This avoidance is due to the child’s high anxiety levels. They feel that they are not in control. As I was reading it explained all the gaps that never made sense before.  It was all to do with Morgan’s general levels of anxiety – as these levels rose so his ability to cope diminished.  It explained why he was able to keep things under control at school and melt down in the evening, by bath time and bed time he was ‘full’ of all the day’s anxiety needed to sleep it off – and so by morning there was ‘Mr Nice’ again! 

The main characteristics of PDA are:

-          Resisting demands obsessively, appearing sociable to outsiders but with difficulties recognised by parents.

-          Excessive mood swings.

-          Comfortable (sometimes to an extreme extent) in role playing and acting.

-          Language delay in, delay speaking and/or vocabulary, seemingly as a result of disinterest

-          Obsessive behaviour.

-          Being super-sensitive.

What’s the future for Morgan?

Well, we have not been ‘stamped’ with a diagnosis and I am in no rush for that.  As I stated earlier I believe this would only really be helpful to provide understanding as Morgan gets older.

But, I’m still not sure about telling him he “has” something. How productive would that be?

The overwhelmingly positive thing about the book is that it has given me understanding – I see it making sense on a daily basis.  I can use the strategies in the book, and I can try and help Morgan as much as possible. 

I don’t always get it right and that’s for sure – having many of my own meltdowns! 

However, most importantly I can try to ‘manage’ his anxiety – realising the triggers, anticipating when he might be reaching maximum capacity, making those allowances and letting him decide on things when appropriate have all made a huge difference. 

Simple things from the book have been amazing… instead of:
 ‘Morgan can you clean your teeth please?’ = demand
‘Morgan, do you think now is a good time to clean your teeth? = a question
‘It is time to come and do your homework, perhaps?’
‘We are going to eat dinner now if you would like to join us?’
A very straightforward strategy is just leaving him alone more… like that moody teenager, he needs his own space, and he needs quiet time.
This sounds simple enough but just changing language around like this and making simple daily requests less of a ‘demand’ has made an enormous difference. But, because I have these strategies that work, dealing with Morgan is so much better.  

I can enjoy him again, and appreciate his charm and sweetness. 

Dos and Don’ts:

-          Do choose your battles, some things really don’t matter.

-          Do be prepared to change your plans.

-          Do think ahead! Train yourself to spot potential triggers.  I booked haircuts after a school disco, nightmare!  Morgan hates loud noise and was mega anxious when I collected him. I should have just cancelled the hair! Instead I persisted and a meltdown occurred.

-          Don’t feel guilty; the problems were not created by something you have done.

-          Don’t worry about what other people think.  You often get the ‘ooh, look at that naughty child’ stare – ignore it!

-          Don’t beat yourself up, everyone gets it wrong sometimes.

Most of all – enjoy the good times, take advantage of the more malleable days and talk to other adults with similar experiences. With understanding and support this and other ASD can be managed. Be aware there are those who think this is all ‘made-up’ - it’s bad parenting or too much modern ‘mollycoddling’.

Trust your instincts and find support, there is a wealth of information out there as well as parents all going through very similar experiences.

Jess Driscoll.

 InterHigh English Teacher