Beginning to Build a Framework of Strategies for Children

Many moons ago, when my daughter was only about six to seven years of age, I discovered by chance, a condition that fitted her profile like a glove.  That profile was PDA and back then there was very little information about PDA.  There was the PDA Society (formally the PDA Contact Group), a page on the National Autistic Society, the wonderful You Tube videos by Neville Starnes and that was basically your lot!  I can remember the excitement felt by many parents as we attended the first ever national PDA Conference in London and eagerly waited for the publication of the first ever book ‘Understanding PDA in Children’ by P Christie et al.

The internet is now awash with information, handling strategies and guidelines, which is fantastic and shows just how far awareness has come, but it can sometimes make it confusing and overwhelming, not really quite knowing where on earth to start.

For those of you who may find it useful this is where I started my journey and how I applied the recommended PDA strategies to my daughter between the ages of 6 to 10 years.

The same principals may still apply for older children but the strategies will need adjusting and tweaking to allow for maturing years, also new strategies may need introducing to deal with the many new issues that can occur during the teenage years.

Handling guidelines for M, as recommended in all of the literature then available on PDA,  did bring us positive results and did reduce meltdowns, involving violence and the destruction of property, from approximately 3-5 a day to once in a blue moon.

At home she gradually became far calmer and less controlling over us. It took nearly three years of using these guidelines to produce the positive changes that we eventually began to see and so don’t expect miracles overnight!

At the ages of 6-9 her system was in so much turmoil and had taken such a battering from incorrect understanding and the use of the wrong strategies i.e. traditional behaviour modification, that we had to strip everything back to basics. It was like taking her back to the beginning of her life and starting all over again but with a completely new understanding of the new and different way that we needed to parent her.

  • We always tried to phrase demands in a way that offered M choices and we were always prepared to negotiate.  M, by that age, knew what correct behaviour and wise choices were, but was more likely to display appropriate behaviour and to make wise chooses if this was within her control, presented correctly and free from consequences & repercussions. E.G. “Do you want to go in the classroom or do something in your own room?” or  “M I can’t work out how this puzzle works, because your IQ is so high I was wondering if you could help me?”  This provided her with choice and she still had the option to do neither of the things being suggested which helped to keep her anxieties as low as possible.
  • We learned to go with the flow and accept that achievements successfully gained on one day (when tolerance for demands was high) may not be achievable on another day (when tolerance for demands was low) and our expectations needed to be constantly adjusted accordingly.
  • If a situation occurred that was difficult to handle and we didn’t want it to be repeated, we found that it was much better to go with the flow and to discuss, at a later date, how we could prevent such a situation from occurring in the future, rather than trying to deal with it there and then, which would have likely produced a meltdown.
  • We tried to recognise the subtle clues that may indicate that her tolerance for demands was low and to reduce any demands accordingly. This could change by the minute never mind by the day.  The clue was learning when we could gently push and when we needed to pull back.
  • Leaving the house and engaging in any external social activities always put her on high alert.  This is when M knew that she has the least control over her environment, this is when the most unexpected things could happen and when she has to work so hard to try and keep all of those anxieties, bubbling beneath the surface, under control.  During such times even the smallest of triggers could cause a meltdown. We tried to be aware, pre-empt and reduce unexpected demands, potential triggers and sensory overload at all times.
  • When something unexpected did happen that unsettled her we would immediately empathise and try to solve the problem or remove the trigger to bring her back down to a calmer and more balanced emotional state.  We would always reflect and discuss how we could prevent or work around such an issue from occurring again in the future.
  • M’s home was and still is her safety bubble where she is feels protected from the outside world, when she ventured into the outside world we tried to become her mobile bubble and safety blanket.
  • Rewards, consequences, sticker charts and so on were not successful for M, in fact they only served to cause even further damage to our daughter. So we chose to avoid them at all costs and still do. Rewards and consequences can make the child feel less in control because you have the balance of control with the carrot or stick. The reward or consequence can feel very unjust if the child simply can’t rather than won’t.
  • We try to use surprise rewards that haven’t been used to promote compliance. E.G If she had quietly watched TV while I did my housework we would then go to the park. She would naturally begin to associate that sitting quietly and watching TV was usually followed by a desired experience of playing at the park. Therefore the child receives a natural reward without it being used as a carrot, I found that this worked best with M, although to varying degrees.
  • The same can be said for consequences and we tended to use natural consequences. Using the threat of a consequence, to promote compliance, can often only serve to increase anxiety which may be expressed as anger. But a natural consequence, used very carefully, could help M to comply, without feeling that she was being forced to due to an impending consequence. E.G. “I understand that you don’t want to put your seatbelt on but we can’t leave until you do because if we have a crash you may be badly hurt and I love you too much to risk that happening.” (The consequence is that we can’t leave).
  • If M was having a bad day and was very spiky then Blueberry could be a useful ally. Blueberry would tell us what was wrong when M couldn’t and in turn we could communicate back with M through Blueberry.
  • We reflected on a regular basis to ensure that were still using PDA strategies. Periods of settled behaviour could sometimes lull us into a false sense of security which would then be followed by periods of disruptive behaviour. Sometimes this was due to nothing that has changed, other than M’s internal state, but it was always worth reviewing if we were still consistently using PDA strategies or if a recent calm period had inadvertently led us back to a more traditional approach.
  • We tried and to give M as much control as we could over her own life and ours.  We would only intervene if we felt that it was a safe guarding or health and safety issue.   Of course, allowing M as much control as possible meant that I became very much under her control, at all times, which was something that was extremely difficult to cope with. Thankfully with age,  maturing years and with a little bit of help from us she began to be able to share some of this control and gradually became less and less controlling over me and others.
  • M’s boundaries were, and still are, as few as possible and the few that we did have were often disguised or negotiated. There had to be some non-negotiable boundaries but because M was, and still is, so complex we needed to limit these to as few as possible.  Non negotiable boundaries were either disguised or enforced because it was the law, health and safety and so on.  All other boundaries were presented to M in a manner that was flexible and open to negotiation.
  • Routine and structure tended not to work with M unless it was her routine and structure.  Routine and structure can be perceived as a need to comply, a menu of demands and only served to increase her anxiety and avoidance. Novelty and variety seemed to work much better and certainly seemed to engage M far more. Perhaps part of this is because predictability increases the perceived perception of something being a demand, it may also becomes boring and lessen the desire to participate.  M did, and still does, need to stick to ‘her’ routines but she will soon begin to avoid, even her own routines, once they are perceived as a demand made on herself by herself.
  • M appeared to completely misunderstand verbal communication and would often interpret everything as being a demand or being shouted out.  We tried to adopt a ‘Children’s TV Presenters’ persona when we were interacting with her, all light, bubbly and excitable because she appeared to find this less threatening than a more direct delivery of speech.
  • Humour, when used correctly and at the right time, could definitely help to defuse a situation especially if we made M laugh at Blueberry Bear or used humour to make fun of another member of the family.

Whilst these strategies have not made our daughter any less complex they did reduce her anxiety which did, in turn, completely eliminate the explosive meltdowns and greatly lesson the control that she excerpted on others.

This process of stripping back the damage, or as a lady on a PDA group wonderfully put it ‘Demand Detox’,  needs to be done, in my opinion, before you can make any positive progress with other areas of concern.

Reducing your child’s anxiety in relation to demands, real or perceived, is, in my opinion, the basis and the foundation upon which everything else can then be built upon.  However, reducing demands, lowering anxiety and restoring some semblance of emotional calm, to a child with PDA, is only the beginning of what will be an ever changing and ongoing process, especially as the child matures and her/his profile begins to change presenting new challenges to deal with, but it is perhaps the most important first step to take.

These are only my opinions based on my experiences with M and I fully accept that this method may not be the correct way forward for all children with PDA.  Sometimes you have to try a variety of approaches before you will find the one that is the most suitable for you.

The link provided will forward you to a post that is full of links to the most useful resources that are now available on the internet Beginning your journey with PDA

The link provided will forward you to a posts that look at other areas of difficulty that we may experience with out children Other areas of difficulty

One of the best ways to understand and to help your child is to be able to see the world through their eyes and from their perspective. This blog by an adult with PDA is without doubt the most insightful and informative information that I have read. Blog by dragonriko

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About janesherwin

I am the parent of a child diagnosed with Pathological Demand Avoidance Syndrome. My hopes and aims are to raise awareness of this complex Autism Spectrum Condition presentation.
This entry was posted in 3. Strategies, Understanding, Resources, Discussion and More, Beginning to Build a Framework of Strategies for Children, Uncategorized and tagged , , , . Bookmark the permalink.

4 Responses to Beginning to Build a Framework of Strategies for Children

  1. dragonriko says:

    Lots of excellent advice, will share around 🙂

    Like

    • janesherwin says:

      Thank you, due to M’s maturing years and need for privacy, I have closed down my ‘Understanding PDA Blog’. This was adapted from an old post on there. I wish I could write about navigating the teenage years but I’m only just beginning to muddle my way through that path, hence why I am finding your work and that of Donna Williams such a life saver.

      Liked by 1 person

  2. Sherrie says:

    My daughter is 11.5 and going through a privacy and socially anxious stage.

    Like

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