by Linda Thornton

 

The difficult thing with "PWS behaviour" is being able to understand why your child may have temper tantrums, or explosive behaviours, melt-downs, call them what you will.  What may seem to you and others like an out-and-out extreme behaviour, may well be your child’s method of communicating something important when all else fails. In other words, the child without PWS who has temper tantrums at age 2, 3, and onwards at varying stages, even through to the teen years, is trying to make you see how frustrated they are. 

 

We can accept that from the two year old who wants a packet of sweets temptingly put out on the supermarket counter and wants it NOW and can’t see why that is not going to happen.

 

We can even understand the 7 yr old who wants to have a new dress for a party because all her friends have one and she doesn’t want to be the odd one out.

 

We can even attempt to understand the non-communicative teenager whose love-life has gone bad and the end of the world is just around the corner.

 

But the hardest thing for others to understand is the young adult with PWS whose behaviour is still remarkably like the two  year old, or the seven year old, particularly when that person is now 19 or 20 years old and ‘should know better’.  The thing is, they don’t. It’s as though they are unable to process the information given to them, something in their brain short-circuits, and hey presto out comes the explosive behaviour.

 

Witness the young adult at work experience.  She works at the SPCA and does her work well.  She has a job coach who is there to help only when needed.  Then, one day, out of the blue, she is told that she needs to change her routine, that the cats are not responding to a certain food and the dogs aren’t getting enough exercise.

 

What she hears is this: “You are not doing your job. You made the cats sick.  The dogs aren’t being looked after.” The information going into her brain was short-circuited and the outcome is an argument followed by explosive behaviour. When asked, after things had calmed down and the job coach had been able to intervene successfully, what went wrong, the girl replied, “I didn’t hear what was said.  My brain got scrambled.”  It was interesting in this case to hear the girl give a very clear message back to those in charge.  What she was saying was, “Don’t tell me a great heap of negative information because I can’t take it in, and I think you are accusing me of something.  It is better if you ask me one thing at a time and I can answer you in my own way.” 

 

A long time ago, it was common to describe behaviours of those with PWS as being in the 6-10 year range.  Then it became discarded in favour of looking at the person as a whole, rather than demeaning the older person. Perhaps it shoudl be kept in mind that when the behaviour becomes challenging, it pays to remember that the person often reverts to the type of behaviour that a 6-10 yr old might.

 

To back this up,  Ross W. Greene, PhD, in his book The Explosive Child, (a new approach for understanding and parenting easily frustrated, ‘chronically inflexible’ children) has this to say and, although not specifically designed for people with PWS, the pattern fits remarkably well, no matter what the chronological age of the person might be:

 

Common Characteristics of Explosive behaviour

 

1. A remarkably limited capacity for flexibility and adaptability and incoherence in the midst of severe frustration.  The child often seems unable to shift gears in response to parents’ commands or a change in plans and becomes quickly overwhelmed when a situation calls for flexibility and adaptability.  As the child becomes frustrated, his or her ability to “think through” ways of resolving frustrating situations in a manner that is mutually satisfactory becomes greatly diminished; the child has difficulty remembering previous learning about how to handle frustration and recalling the consequences of previous inflexible-explosive episodes, has trouble thinking rationally, may not be responsive to reasoned attempts to restore coherence, and may deteriorate even further in response to punishment.

 

If that doesn’t relate to PWS in a nutshell, I’ll be most surprised!  In his second point, he goes on:

 

2. An extremely low frustration threshold.  The child becomes frustrated far more easily and by far more seemingly trivial events than other children of his or her age.  Therefore the child experiences the world as one filled with frustration and uncomprehending adults.

 

And again, in the PWS world, this does not relate just to children.

 

3.  An extremely low tolerance for frustration.  The child is not only more easily frustrated, but experiences the emotions associated with frustration more intensely and tolerates them far less adaptively than do other children of the same age.  In response to frustration, the child becomes extremely agitated, disorganised, and verbally or physically aggressive.

 

4. The tendency to think in a concrete, rigid, black-and-white manner.  The child does not recognise the grey in many solutions (“Mrs Robinson is always mean! I hate her!”  Rather than “Mrs Robinson is usually nice but she was in a really bad mood today”); may apply oversimplified, rigid, inflexible rules to complex situations; and may impulsively revert to such rules even when they are obviously inappropriate (“We always go out for recess at 10.30.  I don’t care if there is an assembly today, I’m going out for recess!”).

 

Sound familiar?

 

5. The persistence of inflexibility and poor response to frustration despite a high level of intrinsic or extrinsic motivation.  The child continues to exhibit frequent, intense, and lengthy meltdowns even in the face of salient, potent consequences.

 

We all know about that one!

 

6. Inflexible episodes may have an out-of-the-blue quality.  The child may seem to be in a good mood, then fall apart unexpectedly in the face of frustrating circumstances, no matter how trivial.

 

7. The child may have one or several issues about which he or she is especially inflexible—for example, the way clothing looks or feels, the way food tastes or smells, and the order or manner in which things may be done.

 

8.  The child’s inflexibility and difficulty responding to frustration in an adaptive manner may be fuelled by behaviours—moodiness/irritability, hyperactivity/impulsivity, anxiety, obsessiveness, social impairment—commonly associated with other disorders.

 

9.  While other children are apt to become more irritable when tired or hungry, inflexible-explosive children may completely fall apart under such conditions.

 

So, while we may think that PW behaviours are ‘unique’ (and often they are), there are many that fall into a category common to children without the syndrome.  The difference is that although the behaviours described above are pretty much exactly the same as we have experienced with PWS, they are actually describing the behaviour of young children. I don’t advocate treating those with PWS as constantly being in the 6-10 yr age bracket—they’re definitely not! - but it pays to remember that when issues become too complex for the person with PWS to deal with, their behaviour may well revert to this level.

 

Knowing this, it gives us an opportunity to more clearly understand the nature of the syndrome and give us clearer insights into how to communicate.