Autism, Aspergers Syndrome or Pathological Demand Avoidance Syndrome?
Introduction to Pathological Demand Avoidance Syndrome
Does my child have Pathological Demand Avoidance Syndrome?
Handling Pathological Demand Avoidance Syndrome
Pathological Demand Avoidance Syndrome
Pathological Demand Avoidance Syndrome
Could it be Pathological Demand Avoidance Syndrome
I have Aspergers Syndrome and yet many tell me I don't fit the profile exactly. Now I have argued that this because the female with Aspergers Syndrome (or with a mild Autism Spectrum Disorder as it is now going to be diagnosed as from this year), presents very differently from the male with Aspergers Syndrome or Autism. This is true too I know from my own research and from observing my autistic son but then there is the question of certain personality traits that just don't fit the picture whereas others are undeniably classically autistic.
That has led me on to wonder what other explanation there could be for us i.e. we both have a diagnosis of being autistic and yet in some areas we behave very non-autistic indeed. Then there is the question of the normal 'strategies,' that help children and adults with autism and while I understand the logic and purpose of them I have also discovered that a lot of them just don't seem to gel with my rather obstinate, hard to reach son. Which has led me to ask myself too, 'would they have worked with me when I was a child if I had had a diagnosis back then?'The answer some of the time is, 'yes that would have been a great help to me as a child,' but on other occasions the answer would have been 'I doubt it.'
This has then led on to the purpose of this article i.e. the whole area of Pathological Demand Avoidance Syndrome. I only recently came across this condition on Twitter and I was so intrigued that I have now just finished reading a book on the topic called Understanding Pathological Demand Avoidance Syndrome in Children by Phil Christine, Margaret Duncan, Ruth Fidler and Zara Healy. This book is aimed at helping parents, teachers and other professionals who work with children affected by P.D.A.
So what exactly is Pathological Demand Avoidance Syndrome?
Pathological Demand Avoidance Syndrome was first recognized back in the 1980s by Professor Elizabeth Newson. She was the first professional to really query the ever increasing number of children who while they appeared to have many characteristics of the typical Autistic or Aspergers Syndrome child at the same time they did not fit either profile correctly either. Often these children were diagnosed as having so called Atypical Autism in the USA or in Europe they would have been more commonly diagnosed as having PDD NOS i.e. Pervasive Developmental Disorder Not Otherwise Specified.
In essence both of these terms refer to children who although do display some very strong autistic characterisitcs in certain areas they do not display them all or in the correct severity to be considered classically autistic. Meaning they don't tick all the right boxes in all the diagnostic areas to be given a complete autism or Aspergers diagnosis.
So Professor Newson noted that while this group of children were definitely not fitting the profile of classic autism they still were displaying a distinct set of characteristics that they all had in common with each other. She then summarized this common bundle of traits by saying that what all these children had in common was, 'an obsessional avoidance of the ordinary demands of everyday life.'
Professor Newson also claimed that this avoidance was also coupled with a child who could be quite 'socially manipulative,' in their avoidance of the everyday demands of normal living. It was inevitably this social understanding and their ability for imaginative play which usually (but not always) ruled out a comprehensive autism diagnosis.
Typical Characteristic of the Pathological Demand Avoidance Syndrome child:
Mild mannered and easy to manage in the first year of life.
Constantly resists the normal demands of everyday life and their strategies for doing this can be very clever and usually involves the social manipulation of others.
The older P.D.A. child will usually appear sociable on the surface but underneath they really have a total lack of social identity, along with no sense of shame or pride in themselves.
They are usually impulsive and have a constant need to control every situation.
These children observe others and in time become very adept at role playing and pretense.
They usually have a very marked language delay which is often as a result of being socially passive or aloof but when they do speak they often catch up very quickly.
They will usually display obsessive behavior about certain topics similar to the classically autistic child.
Is Pathological Demand Avoidance Syndrome a separate condition on the Autism Spectrum?
This is still being debated by Professionals and in fact many have not yet recognized Pathological Demand Avoidance Syndrome as a distinct condition on the Autism Spectrum. Still many parents feel this diagnosis explains their child's difficulties the best and that the strategies recommended for the child with Pathological Demand Avoidance Syndrome work well with their children. Whereas those for the classically autistic child often only have a minimum impact.
Pathological Demand Avoidance Syndrome described in more detail.
Often with a child with Pathological Demand Avoidance Syndrome the first year typically passes by with a relatively happy baby who sleeps well and makes few demands on their parents once they are fed and cared for normally.
It is only in the second year when there is more expected of the child that parents or other caregivers may begin to notice subtle differences in their child. Typically the PDA child will not be diagnosed until much later than an autistic child, the average age being about eight or nine and many will already have been given a diagnosis of classic autism or Aspergers before being diagnosed with Pathological Demand Avoidance Syndrome
Pathological Demand Avoidance Syndrome can be best described at this stage as being a need to be in control. This leads to a tendency to avoid other peoples demands or expectations of them. This demand avoidance though is not because the child doesn't want to comply with the request but rather it is fueled by an intense anxiety that the child feels at the prospect of not being in control of the situation.
At any given time any suggestion made to this child can be construed as a demand and the child will then feel extreme anxiety at being made to conform to social norms of any kind. For this child any requests or advise given to them will also be interpreted as more demands being made of them
While a child with an Autism Spectrum Disorder often avoids social demands too they usually do so by ignoring you, walking away from you or by totally withdrawing from a situation. Whereas a child with Pathological Demand Avoidance Syndrome is much more likely to seek to avoid a situation in a different away. The term often used is that they can be socially manipulative in their efforts to avoid doing something that doesn't appeal to them e.g. they are quite capable of using social empathy to their advantage. Or the key statement that rings bells with me about my own situation is, 'if only he would put the amount of effort into learning everyday skills that I would love him to master as he so readily puts into avoiding doing what he doesn't want to so.'
Common avoidance stragies used by the child with Pathological Demand Avoidance Syndrome:
Giving excuses is a common Pathological Demand Avoidance Syndrome strategy:
For the verbally able autistic P.D.A. child they will use a myriad of different suggestions and phrases to get out of doing something they don't want to do.
Lets play doll's.
Can we go for a drive?
Do you like my new dress?
Will we watch television.
My legs don't work.
I don't know where the kitchen is.
Any number of excuses will be used over and over by a P.D.A. child to avoid doing something that they don't want to do as they feel this would mean relinquishing control of the situation and this always causes them severe anxiety and panic.
On and on their avoidance strategies will go until they have finally worn you down into doing what they want and at this stage you have probably forgotten what it was you wanted them to do in the first place.
Using the Social Niceties to their advantage is another P.D.A. Tactic:
N.B. This is where children with P.D.A. differ hugely from the child with classic autism. The P.D.A. child can be very socially intuitive and usually adopts strategies to use their social skills to get what they want by being very polite and subservient in their requests.
Usually they can have amassed an impressive collection of mannerisms and phrases that they will use regularly to convince you to give them what they want.
E.g. If asked to get ready for a trip to the shops you might get a reply such as, 'no thank you not today if you don't mind I think I'll stay here and play my Wii.'
These children also seem to be very capable of quickly cottoning on to what particular strategy will work with which particular person and what angle to take to achieve getting their own way with that particular individual.
It was this ability to be socially intuitive, to appear to have empathy for others and to be also able to use eye contact and body language well (when it works to their advantage) that originally led Professor Newson to believe that this group of children had a distinct condition on the Autism Spectrum which she then called Pathological Demand Avoidance Syndrome.
However she then also noticed that while on the surface these children seemed to be socially capable it was usually an act they put on and underneath they didn't really grasp the level of response that was required in many social settings.
In some instances their social response might be too strong whereas in other situations they might not give a topic the correct amount of consideration or empathy and also they have a tendency to completely overreact to something that the normal child might know is a trivial concern. Also P.D.A. children often take over a situation and completely dominate others.
The fact that they have empathy does not mean that they always necessarily know how to use it appropriately either and it was also noted by Professor Newson that it appears that they empathize at an intellectual level rather than at an emotional one i.e. they know empathy is required and they know they need to show it but they don't necessarily actually feel it underneath.
P.D.A. children also usually don't treat adults and children differently nor do they recognize authority figures as being in charge or nor do they recognize social boundaries. Also they often don't feel obliged to take responsibility for their own actions. Usually they also ignore efforts by others to appeal to their better nature.
The P.D.A. child can change moods very quickly, is impulsive and needs to be in control:
Children with Pathological Demand Avoidance Syndrome can go from happy to sad to distraught very quickly and repeatedly. It seems they have a lot of difficulty managing their emotions. While this is also often a common issue with autistic children it is always a strong feature of P.D.A.
These children can also be very impetuous and often look before they leap whereas the autistic child usually plans and maps out every action much more carefully than a child with PDA. Also this uncontrolable impulsiveness usually continues into adulthood also.
Role play, pretending and an inability to differentiate fact from fiction.
Role play and pretending is also a major feature of Pathological Demand Avoidance Syndrome. In fact the PDA child will usually be able to immerse themselves in becoming a character from their favorite program, game or book. They ar also very good at mimicking others nad taking on their mannerisms and speech patterns when they feel it is beneficial to them. Sometimes though the PDA child can also confuse fact and fiction and be unable to draw a proper line between the two.
Language Delay is common in the PDA child as is an ability to catch up quickly when motivated to do so:
As the child with Pathological Demand Avoidance Syndrome likes to observe and be rather passive in their early childhood this usually means that they will have some degree of language delay. In her studies Elizabeth Newson said language delay was present in up to 90% of PDA children. However most had caught up quite well by the age of six.
Non-Verbal communication though is much better than would be seen in an autistic child. They seem to be able to initiate good eye-contact (except when trying to avoid demands) and conversational timing that would not be present in the autistic child. Also they seem to have a good understanding of expressive language long before they speak themselves although in some cases their processing of spoken language can be slower than may be realized.
Obsessive behavior is also common similar to the autistic child:
Children with PDA also have a tendency to become obsessed by certain subjects although it is more common for them to become fascinated by characters or re-enacting certain scenes from books or films that they particularly like as opposed to a particular specific subject i.e. the fixations of PDA children often tend to be social in nature and will usually revolve around a particular person. The danger can be that they become completely obsessed with a particular person they know who may not necessarily enjoy this obsessive attention and a child constantly trying to copy what they do.
Brain and developmental differences:
There is little research on this area at present but it was noted that there does appear to be a certain amount of delay in certain areas for the child with Pathological Demand Avoidance Syndrome.
Crawling may be late or may not happen at all.
Sitting was delayed in a certain number of children.
Also most children were seen to have some coordination difficulties and a degree of clumsiness or an awkward gait.
Attention deficit also appears to be an issue for many although in a third of cases this only occurs when they feel under pressure or anxious.
N.B. In a future article I will explore what kind of educational strategies will work for the child with Pathological Demand Avoidance Syndrome as it is important to adopt certain strategies and to tweak others commonly used for the autistic child to have any hope of success with the PDA child.
Getting a diagnosis for this condition is still extremely difficult and can be an uphill battle for more information on the condition please refer to the book that I took my research from i.e.
Pathological Demand Avoidance Syndrome in Children by Phil Christine, Margaret Duncan, Ruth Fidler and Zara Healy. This book is aimed at helping parents, teachers and other professionals who work with children affected by P.D.A.