Pathological Demand Avoidance Syndrome - A little known part of the Autistic Spectrum that leaves a big impression.

Let's begin with a summary form the National Autistic Society website, which can be found by clicking the link below.

http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

“People with pathological demand avoidance syndrome (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.

PDA is increasingly recognised as part of the autism spectrum. Here, we explain the characteristics of PDA and what can be done to support someone who has the condition.

What is PDA?
PDA, first described by Elizabeth Newson during the 1980s as a pervasive developmental disorder distinct from autism, is increasingly becoming recognised as part of the autism spectrum. It is a lifelong disability and, as with autism and Asperger syndrome, people with PDA will require different amounts of support depending on how their condition affects them.

The central difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control. Hence the name of the syndrome: pathological demand avoidance.

People with PDA tend to have much better social communication and interaction skills than other people on the spectrum, and are consequently able to use this ability to their advantage. They still have real difficulties in these areas though, usually because they need to control the interaction. They often have highly developed social mimicry and role play, sometimes becoming different characters or personas.

The main features of PDA are:
obsessively resisting ordinary demands
appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
excessive mood swings, often switching suddenly
comfortable (sometimes to an extreme extent) in role play and pretending
language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'
obsessive behaviour, often focused on people rather than things.
Often in cases of PDA there will have been a passive early history, but this is not always the case. It is believed that there may be neurological involvement in some cases, with a higher than usual incidence of clumsiness and other soft neurological signs.

The main features of PDA are described in more detail below. Other children on the autism spectrum can display one or more of these features but when many occur together it is helpful to use the diagnosis of PDA because things that help people with autism or Asperger syndrome do not always help those with PDA.

People with PDA can be controlling and dominating, especially when they feel anxious and are not in charge. They can however be enigmatic and charming when they feel secure and in control. Many parents describe their PDA child as a 'Jekyll and Hyde'. It is important to recognise that these children have a hidden disability and often appear 'normal' to others. Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support themselves, as their children can often present severe behavioural challenges.

People with PDA are likely to need a lot of support into their adult life. Limited evidence so far suggests that the earlier the diagnosis and the better support that they have, the more able and independent they are likely to become.”

So, there you go. A simple explanation that goes part way to describing life with PDAs.

A little history and how I came to learn that my son, Dominik, was not quite what I thought!

Dominik was born with no complications after a simple natural birth. He was highly alert. Incredibly demanding and met all of his milestones very early. He came out raring to grow up!

We moved to La Gomera when he was 3 months old after travelling around Europe by car for 7 weeks.

As the months passed and we got to know others with small children around Dominik's age we began noticing difference. He was louder, he was more persistent, he was more capable, he was fussier, he was more intense across the board.

By the time he was a year old, he was walking, he had 16 teeth and his feet were the size of a 3 year olds'!

He would not be dissuaded from anything he was engaged in. He tried to make friends but went about it the wrong way, he seemed to see no difference between children and adults, male and female and would not be bribed nor cajoled by promises of ice-cream or fizzy drinks. If he wanted to do something, he did it,

He was a born escapologist. The number of times he escaped from his pushchair, broke out of his cot, tried to log into the computer, stole food from the cupboards, trashed his room and escaped from our house I cannot count.

He was certainly different! It was obvious that he was of above average intelligence and had a fair degree of hyper-activity but aside from that, he was excellent fun and always kept me on my toes.

Needless to say, he followed none of the rules! I read as many parenting books as I could digest (in between chasing him around and meeting his needs) and yet none of them seemed to work! He was expelled from his first class at the age of 3 and a half after less than an hour. He simply did not understand that there were rules that he had to abide by! Whilst all the other children did as they were told, Dominik charged around the room, investigating every corner and asking a constant stream of questions.

Now, I suppose, had we been in England, we would have sought some kind of professional advice but being abroad, on a tiny little island, that was not a possibility, so we just ploughed on.

As a result of lots of twists of fate we returned to England in 2010 when Dominik was almost 6 years old.

A chance conversation with a friend brought Asperger's Syndrome to my attention at the same time as I decided to take him to an Educational Psychologist.

The private Educational Psychologist measured his IQ as being roughly 130+ (he refused to complete all the tests, no surprise there) and the NHS paediatrician diagnosed ADHD with traits of Asperger's. So, right from the get go, he did not fit neatly into the ASD profile.

He was far too social, far to good at making eye-contact and far too good at imaginative play to fit neatly into the Autism box.

As time passed and I began to train myself in the strategies and parenting techniques recommended by the professionals to manage Autistic behaviour, his confidence, pliability, and willingness to participate in everyday life decreased. He became stressed by the timers I bought, refused to stick his stickers on the Power Rangers reward chart I made for him, and fought every instruction tooth and nail.

I should mention at this point, that it was never my intention to send my children to school. Before I had any children I had made up my mind that they would be home educated (although, not in the way we currently do) so school had never figured in my thinking. And thank goodness! Dominik could read fluently and independently by the age of 3. He had memorised all the Thomas characters by the age of 2 and his ability to learn new skills was unparalleled. School would simply have compounded many of our problems. For example, Dominik would not be rushed...ever! I cannot imagine the battles we would have had simply trying to get him dressed (which he still hates to this day), trying to get shoes on, trying to get him to transition from one activity to another. And the list goes on as I am sure many of you know.

So, how did I come to discover PDAs? Well, I joined a Facebook group of home educating, single mums and one of them, whose name was Laura, happened to mention to me that she had met an amazing former Headteacher who had assessed her son and determined that he had this little known condition called PDAs, which was a part of the Autistic Spectrum of disorders. Aha, I thought, maybe she would be interested in meeting Dominik.

We consequently met with Felicity (Evans, www.naturekids.co.uk) and she observed Dominik over the course of an afternoon out at a farm and then again at her home, which is where she runs her small, private school.

Felicity was able to give me new language and strategies which turned our lives toward a positive direction for the first time since I had begun seeking answers,

I no longer tried to use bribery, coercion and punishment and I no longer used timers and reward charts. I began taking some of my more subtle tactics to a whole new level! Now life was about negotiation, compromise and acceptance.

I accepted that Dominik was never going to be someone different. He was himself to the nth degree at all times. He did not care about being socially acceptable, he did not care about making friends (although, he does now), he did not care that he was 'just a child' and most importantly, he was never going to accept being treated in any way that was less than equal to an adult.

I think that the last point is perhaps the most difficult to understand. Dominik does not see division. He does not see differences. He treats everybody the same and does not tolerate double standards. If I say, "I'll be there in a minute." then so can he, If I can decide that I want a snack instead of dinner, then so can he. If I can choose when I go to bed, then so can he. Etc etc.

To observers, I am sure he appears crass, loud-mouthed, oafish, hyperactive, unkempt and out of control but to me he is simply Dominik. My amazingly tenacious, determined, hard-working, accepting, loving, dedicated and enthusiastic son who will never accept any less than he thinks he deserves.

Below is a link to the PDA Resource website and the PDA Society website. I cannot recommend them highly enough if you would like to learn more.

The PDA Resource

PDA Society

A must read page on Jane Sherwin's blog called - Strategies that work for Mollie.

And here are the results of the PDA questionnaire, produced by Liz O'nions, which I, and many of my friends completed.

Paper on the new PDA questionnaire (the EDA-Q)
by Liz O'Nions and others
I hope this has given you some new perspectives. I hope that perhaps it has even given you some clues if your child doesn't quite 'fit the profile' but most of all, I hope that this post has given you some hope. :-)

And please, do contact me if you would like to know more.

N x