How to…support a child with a PDA (Pathological Demand Avoidance) profile.
When I worked in the UK, PDA or Pathological Demand Avoidance seemed to have been more widely recognised and known about by professionals and parents. As time goes on, it seems to be getting more recognition here in Ireland but is still relatively unknown by many parents and educators. For those of you who may have never heard of it, or are relatively new to the term PDA, it is considered to be a profile associated with Autism therefore it is not a stand-alone morbidity but is intrinsically linked to a diagnosis of ASD.
A person with a PDA profile may be driven to avoid demands put on them in everyday life but to an extreme extent, so not necessarily your run of the mill refusal or avoidance. This can be in relation to things that most of us find quite ordinary and routine; things such as getting up, getting dressed, brushing teeth, going into school, following instructions, etc. Resulting behaviours can seem quite oppositional or defiant in their nature however, these behaviours are more so stemming from an increase in anxiety, stressors or sensory overload and the subsequent need to feel in control of a given situation.
Professionals believe that children with a PDA profile may appear to have increased communication skills, better social understanding and feel more comfortable in imagined and role play situations. Due to these factors their weaker skills in other areas can often times be masked. So, their decreased understanding of communication, social skills and processing difficulties may be hard to detect or seem less apparent in comparison to their peers.
According to the research some indicators of a PDA profile may include some of the following:
- Refusals to complete routine, everyday tasks.
- May appear skilled in the art of avoidance tactics such as changing topics, distraction and giving excuses.
- Can appear sociable but lacks understanding of social context.
- May appear impulsive and have excessive mood swings.
- Enjoys role play or pretence.
- May have difficulty with accepting responsibility for their own actions.
- Displays of obsessive or controlling behaviour over other people and their actions.
Consequently, those with a PDA profile are often considered or described as being quite controlling, obsessive, dominating or even manipulative.
Usually, the behaviours exhibited due to PDA, are exacerbated by feelings of anxiety and worry. Due to these feelings of anxiety and this sense of a lack of control, the child/adult may begin to look and seek excessive control of the situation at hand, therefore seeming to be even more demanding, controlling and dominating.
For parents and teachers, it is important for us to be able to recognise and support children with a PDA profile. Due to the increased feelings of anxiety in many of these children, they can easily become disengaged with the tasks put in front of them. The demand being put on them through tasks and activities can increase their stress levels and anxiety which will result in an increase in such behaviours as mentioned above as well as an increase in refusals, disengagement and quite often, acts of aggression.
As educators, working with children and adolescents with ASD, we often focus on implementing routines, focus, repetition and quite rigid and repetitive techniques to support children in our classes but in my experience, if we try to apply these same strategies to support a child with a PDA profile, we usually see an increase in their PDA related behaviours (increase in refusals, avoidance, distraction tactics, etc). We, as educators need to adapt our thinking and support these children by being more flexible, offering choice and variety to help the child to settle, feel more at ease, less anxious and more in control of themselves and their environments. We need to ensure that positive relationships are formed between children and adults, so they feel safe and settled in their environment. We also need to think carefully about the approaches we use to communicate effectively and how we can adapt our teaching styles to suit the needs of our learners.
Here, I will share some of my own experiences of supporting children with a PDA profile and share with you the strategies that I have found to work in my own settings and with my own children in classes.
- Refusals to come to school:
In my previous post I have discussed how I support children who may refuse to come to school. This is one of the greatest of all demand avoidances that we may face as teachers and so all of the strategies that I mentioned in this previous post may help to support a child with a PDA profile in the encouragement of them attending school. Click the link below to read this previous post. Here you will find suggestions such as the following:
- Changing school start and end times to allow children to come and leave school in a more sensory friendly atmosphere and environment.
- Allowing children to have access to sensory or movement breaks on arrival to school as well as frequently throughout the day.
- Allowing children to access calm kits to support their sensory systems and to alleviate feelings of stress and anxiety.
- Sending home and using social stories to explain what will be happening on the next school day or to explain daily routines such as getting ready for school, travelling to school, the school day, etc (again reducing stress and worry about the unknown).
- Using visuals and tick lists to support organisational skills when children arrive to class, so they know what they are expected to do.
- Teaching self-regulation strategies through programmes such as Zones of Regulation, How does your Engine Run? or The Incredible 5 Point Scale. This will support children’s lifelong skills of regulating and coping with stressors.
- Give children choice in their daily routines:
In my experience, asking a child with a PDA profile to follow a set up visual routine for the day would often lead to an increase in refusals, a decrease in task engagement or task completion as well as an increase in their use of distraction and avoidance tactics. Something that I found incredibly useful was allowing the child to create their own visual timetable for the day. Allowing for this type of flexibility can be hard to get use to, particularly when you are trying to pre-plan for all children in your class as well as all adults and support staff within the one room but the effort this takes is worth it for the benefits that I have seen.
By giving the child this sense of, and actual, control, can allow them to reduce feelings of anxiety dramatically. It allows them to make the choice to do and complete work. By implementing this strategy, they are following their own schedule, ie what they want to do and therefore they are putting some of the demand on themselves.
When I started using this strategy I was concerned that the children would simply put playtime or sensory or break up for the entire day (something I will note that I was willing to accept as we built a good relationship and from there I would reintroduce more structured tasks as and when I deemed appropriate) as this is what seemed to interest them and motivate them most, however, I found that the children tended to pick the same visuals that we would normally do but put them in their preferred order of tasks.
For this, you can simply give them free reign of all visuals or what I would recommend and what I tend to do is to leave out the visuals to represent the tasks that I have planned for, for that particular day and allow them to complete them in the order they wish (these always include lots of visuals for sensory and movement breaks as in my class we both schedule these breaks frequently as well as giving them upon request from the children and when we feel they need them too). In this way the work, tasks and activities are all still being completed and in honesty, more work tended to get done as there was a significant decrease in refusals and avoidance tactics.
I won’t lie by saying that this is an easy strategy, it is not. To implement this takes a high level of co-ordination and planning with your whole class team. In essence, you are still completing the work that is planned for the entire day, however, a different adult may be working with the child for different tasks (in contrast to your planning) so you need to make sure that all adults and support staff are aware of what is planned, for the child, on each given day.
- Negotiate tasks with children:
As I mentioned above, giving choice can be key to alleviating some stress and anxiety. Allowing a child to organise their tasks into an order they are happy with completing them in is a great first step. However, even with this, and although you may see a decrease in refusal behaviours, there will most likely still be refusals for work/task completion. To support this I offer more choice, so for each activity I will give an option of completing one out of two activities. (Note: Be wary of offering too much choice as this can confuse children and lead to an increase in stress/anxiety). This may seem time consuming, and in honesty, to begin with it feels it too, but once you have built up a bank of tasks and resources, it simplifies itself. You will have your learning objectives and goals set out in your IEP’s or SSP’s so having a range of strategies and activities and tasks to help a child to reach these targets is key. By having this range of activities on offer, that all lead to supporting these goals, you will have a bank of tasks for them to complete so simply offering 2 similar activities for them to choose one, again, allows the child to feel that they are in control. This is a win-win situation; the child feels less stressed and their learning journey continues. Some examples of how to implement this can include simple things such as the following:
- If asking a child to complete a puzzle: give the choice of 2/3 puzzle pictures.
- If asking a child to complete fine motor skills to improve pincer grip offer a choice of using pegs and peg board, sorting pom poms by colour using tweezers or collecting pom poms with a cut tennis ball.
- If asking a child to complete a written activity you can either offer two separate pieces of similar work eg. reading, give choice of 2 stories, or for comprehension questions highlight even numbers in one colour and odd numbers in another and ask which set the child would like to do or leave it free for them to choose to answer any 5 out of 10.
- Another choice that I often found worked well was offering the child the chance to write the answers into copies or type onto computers. Or again to record the answers orally on the iPad or to use apps such as Snap Type to complete the exact same written activity but on the iPad (this app is a game changer, especially for those who are highly motivated by getting to use the iPad in class; use technology to your advantage!)
Note: And as with all tasks in class, I use my combined first/then and economy token boards to encourage, positively reinforce and praise children for all their efforts while they work. This also gives children a super visual for understanding that once their task is complete, they will have earned their reinforcer/choice time. Again, feel free to check out my blog post on how to use my combined token economy and first/then boards below:
- Emotional Regulation:
This is an area that many children struggle with, particularly those with a PDA profile. I have found that the children I have worked with can, at times, have quite erratic emotions and mood swings which mean they need support to begin to understand their emotions, how to identify them and how to control and self-regulate so they in turn can begin to feel less stressed and anxious in everyday situations. I am a huge fan of The Zones of Regulation Programme and use this with the children in my class with great success. I teach this explicitly in my class throughout the year and every September I dedicate 20-30 minutes every day to teaching and reteaching the principals of this to increase understanding and engagement year on year. Having done this for 3 consecutive years, (and previously in a SET setting) I can see the increased understanding my children have in identifying emotions and gaining control over them. Teaching a child to understand and deal with their emotions is a huge undertaking but such an important skill to instil in our children. We must remember that we need to Maslow before they can Bloom. Children need to have all the fundamental pieces in place to be able to learn before any learning can take place and emotional intelligence and regulation is a huge part of this.
- Coping with high levels of stress, anxiety and melt downs:
We all have children in our classes that may find it difficult to cope with high levels of stress and anxiety and when this is triggered it can lead children down the path towards a melt-down or moment of crisis. Again, this is where the need for having a positive relationship with the children in your class is highlighted as being of the utmost importance. We often need to be a confidant of sorts for our children and once they know they can trust us and come to us for support, coping with stress and anxiety becomes a little less challenging for them. One way that I encourage this relationship building is by using teacher talk time cards in my class. These are simple cards velcroed up around my classroom and children know that they can use them at any time of the day to request a minute of free chat with an adult of their choosing in class. This strategy and resource really helps both children and adults to form good relationships and build an understanding of how children are feelings throughout the day. Another strategy that I find works well for when stress levels are high, is using an EXIT card. Children have access to these at their desks and know that if they feel they need to leave the class, they can do so and go to a safe space outside of class where they have access to their calm kit (always supervised by an adult but some space given). This again links into what I mentioned earlier about ensuring frequent sensory and movement breaks throughout the day, as well as the importance for children to have a safe space where they can be alone and decompartmentalise (even something as simple as having a den or tent that they can escape to.
If a child does end up in a moment of crisis remember to be supportive, calm and reassuring. Ensure they feel safe and listened to and support them in all ways possible. Preventative strategies to reduce these instances can include the use of distraction, humour, negotiation, offers of choice and withdrawal but I will go into these strategies in more detail in future blog posts.
- Think about the language (body and verbal) you use with your children:
I really cannot stress this point enough! We are all aware of the need for communication in our classes and we often feel a need to be seen as the one in charge in class but make sure you don’t force your need to be in control, or to be seen as being the one in control. We must be able to relate to the children in our classes and particularly those with a PDA profile as we do not want to be fighting for dominance or hierarchy in the classroom. If you do, this will only lead you down a negative and destructive pathway.
Be clear in your instructions, limit language and allow for extra processing time. Don’t be afraid of silence!!!When working with a child with a PDA profile, veer away from giving order type instructions and try to leave your comments and requests more open ended and general so using phrases like “shall we see what’s on offer today in Maths/what would you like to do today (giving choice) for English?” rather than “it’s time for maths, you must do X, Y and Z”. Avoid orders such as “you must, you have to, you will” and replace with “we could, we may, shall we”, etc. I have also found that by adding in an element of competition with phrases such as “I bet you can’t…” to entice the child to engage with you and the activity works well too.
If you take only one thing from this blog post, then I urge you to remember to be flexible in your thinking, planning and approaches when working with a child with a PDA profile. Believe me when I say that working with a child with a PDA profile can be utterly exhausting emotionally, mentally and physically because what worked for you today, may not work tomorrow or ever work again. For this reason, you need to have a wide range of strategies and ideas in your repertoire to support a child with PDA. Be understanding and considerate of the anxieties and stresses they are feeling and have little control over. Be reassuring, supportive and calm as they navigate through their own challenging journey and be there for them along the way in whatever capacity they allow you to be. As the saying goes “when little people are overwhelmed by big emotions, it’s our job to share our calm, not join their chaos.” Don’t add to the chaos by forcing your own agenda for the school day. Instead support them in finding their inner calm and their own path to learning.
I hope that this gives you some insight into PDA and a few strategies that may help you to support your own children. As always, please feel free to leave a comment below or you know you can find me over on my Instagram page @ASDCreationStation.
Other useful websites that delve into PDA: