Closing the gap between trauma and disability

October 27, 2019 / / No Comments

I’ve been away from my blog for a while, busy with family and work and all the things that life throws at you, but I have been itching to write about this topic, and this week gave me the push I needed to put my fingers to the keyboard.

Earlier this week, I attended a training day about strategies for managing aggressive and violent behaviour in traumatised children and youth. The focus was on understanding the impact of developmental trauma on the developing brain, and being aware that when a child who has experienced trauma is being aggressive or violent, it is usually a fight or flight response and the child is actually terrified. The strategies were all designed to keep the child and yourself safe and to stay connected to help them de-escalate without the use of restraint.

While much of the information about trauma was not new to me, the techniques regarding safety and connection were a breath of fresh air – they were respectful, logical, and focussed on relationships. I could also see how relevant they were to many of the children I support who go into fight or flight for other reasons and may become aggressive as a result (sensory or cognitive overload, severe anxiety, etc.) – not just those who have experienced trauma.

As I listened to the speaker talk about the needs of these young people, what struck me most about it was the stark contrast between the world of trauma and the world of disability. When a child has experienced trauma, there is acknowledgement of neurological and physiological changes as a result of the child’s adverse experiences, that mean they can’t control their emotional reactions and need love and support to heal and become better able to regulate their emotions and behaviour. When a child is Autistic or has another developmental disability, there is an assumption that the child with neurological and physiological difference as a result of their genetics is choosing to act in inappropriate ways when emotionally triggered and needs to be trained to behave differently.

How is it that we can view behaviour that is driven by the same nervous system response to threat in such starkly different ways? And why are disability and trauma so often viewed as separate, when having a disability makes an individual more susceptible to adverse experiences and trauma than those in the general population?

It concerns me greatly that Autistic children in particular continue to be exposed to ABA based interventions and restraining techniques to manage their aggressive behaviour, when what they need is love, support, understanding and guidance. Now I do recognize that there are extreme situations in which restraint is the only means to keep a child and others safe, but it should be a last resort to put a hand on a child – not the first port of call.

While it feels like there is a long way to go before we see the necessary changes to thinking and practice, there is hope. Clinicians and researchers are starting to recognise and talk about neurology, physiology and child development in ways that acknowledge a child’s need to feel safe, secure and loved, and that challenging behaviour can be an indication that these needs are not being met. There is also increasing awareness that it is not only ongoing abuse or neglect, or experiencing a single traumatic event, that can have an impact on a child’s development – adverse childhood experiences (ACEs) and toxic stress can also have a significant and lasting impact on any child.

Ultimately, what we need to remember is that all children, regardless of their neurology, genetics or circumstances, deserve to be acknowledged, nurtured, understood and supported, and what works for one may not be right for another.

When we can see a child for who they are and take the time to be curious about where a behaviour is coming from, rather than making judgements and assumptions, we can support them to grow and develop the skills they need to flourish.

PDA and Therapy – Tips for engaging children with the PDA profile of Autism in therapy

July 13, 2019 / / No Comments

I was lucky enough to attend the Asia Pacific Autism Conference in Singapore last month, and had the opportunity to hear from professionals working in the Autism field and Autistic individuals themselves about topics relating to support, interventions, lived experiences and hopes for the future.

I also had the opportunity to present my ideas about supporting children with PDA in therapy, and was encouraged by the interest of the parents, educators and therapists that attended in wanting to find better ways to engage and support the children with PDA in their lives.

Since my blog last year about using trauma informed practice to support children with PDA, and my more recent workshops on the topic, I have heard from many parents and professionals who said that these ideas resonated with them, and that they could see the benefits of working in this way. However, the focus of most information available about PDA has continued to be around managing behaviours at home and school, leaving a big gap in information and knowledge where therapy is concerned.

I am hoping that I can begin to fill that gap.

To that end, I am excited to be writing a new book for Jessica Kingsley Publishers which will be a clinicians guide for working with children with PDA in therapy. However, it is still a work in progress and won’t be released for a while yet.

In the mean time, I wanted to share my tips for supporting and engaging children with PDA in therapy. It is not an exhaustive list, but highlights some of the essential elements I think are necessary to engage in effective therapy.

RELATE: Developing a strong and trusting relationship with a child with PDA takes time, but I believe it is ultimately the key to their support. As a clinician, it is understood that the therapeutic relationship is extremely important in supporting clients to make progress, but for children with PDA it will make the difference between a child being willing to come to sessions and engage on their terms, or refusing to even attend. A therapist must genuinely care for the child and accept them without judgement, or the child will see through their pretence and be threatened by their words and actions, making the therapeutic process ineffective.

PLAY: Play provides a way to allow a child with PDA to take control of their environment and process feelings, thoughts and experiences in a safe and non-threatening way. Whether it is formalised non-directive play therapy, client-led pretend play, or playfully engaging in games and activities in the therapy room, play is by definition an enjoyable experience, and through enjoyment and engagement, children can learn and develop at their own pace.

CREATE: Creative activities such as drawing, painting, colouring, and craft have been found to be therapeutically beneficial for many children and adults, and can be used in therapy settings to support the engagement of children with PDA and also to be used as a tool for relaxation.

PRETEND: Many children with PDA are comfortable in drama and role-play, so incorporating elements of this into therapy sessions, or simply taking the child’s lead and joining them in their role-play, can be an effective way to connect with them and support them to explore concepts and experiences.

REGULATE: Children with PDA are wired to detect threat and as such are often dysregulated. I have found that it is essential to have activities available for children to help them regulate their arousal level and feel safe when they come to therapy. Without the opportunity to regulate, children cannot engage. Sensory activities such as making slime, playing with playdough, water, rice and sand, bouncing on a trampoline or rocking on a swing, can be very effective in supporting a child to feel calm, safe and focussed.

ADAPT: When working with children with PDA, it can be difficult to predict what they might do or say, or how they might react to situations or activities at any given moment. Something they loved to do one session might be anxiety provoking the next, so being prepared for different possibilities, knowing when you need to step back, and being able to take the child’s lead rather than pushing your own agenda are extremely important.

LAUGH: Humour and novelty have been found to be helpful in supporting children with PDA in school, and this certainly also applies to the therapy room. In my experience, children with PDA often have a fantastic sense of humour, and tapping in to their silly side can make therapy more enjoyable and certainly helps to reduce a child’s anxiety in session. Showing that you can laugh at yourself and ‘think outside the box’ also makes clinicians more relatable and activities more interesting, which enhances the therapeutic experience for the child.

COLLABORATE: Children with PDA need to feel that they are an equal partner in any interactions, rather than there being a power imbalance where an adult has authority. It is important to allow the child to take the lead, and for the clinician to cooperate and collaborate with them when engaging in activities, to avoid a power struggle which will increase demand avoidance and anxiety.

UNDERSTAND: The thing that children with PDA need most from the adults in their lives is acceptance and understanding. Understanding that their behaviour is not a deliberate act to be difficult or a choice to be ‘naughty,’ but is a response to feeling anxious and unsafe that requires unconditional love and support. Children need to know we understand them and are on their side so they not only feel accepted by others, but also learn to accept and understand themselves.

I am hopeful that with increased awareness of the PDA profile and a better understanding of the needs of children with PDA in therapy, more clinicians will be in a position to support children to manage their anxiety effectively, and improve the outcomes and quality of life of children with PDA in the community.

Download my Tip Sheet for Therapists (pdf)

Bibliography:

  • Christie, P. et al (2011) Understanding Pathological demand Avoidance Syndrome in Children, JKP Essentials
  • Christie, P. et al (2018) Collaborative Approaches to Learning for Pupils with PDA : Strategies for Education Professionals, Jessica Kingsley Publishers
  • The PDA Society (2016). Pathological Demand Avoidance Syndrome: A Reference Booklet for Health, Education and Social Care Practitioners.
  • https://notesonpda.wordpress.com/a-z-of-demands/
  • https://pdaguidance.wordpress.com/2016/01/28/why-rewards-consequences-dont-work/
  • https://beaconhouse.org.uk/useful-resources/

Supporting Children with PDA using Play and Trauma Informed Practice

November 5, 2018 / / No Comments

It has been almost 12 months since I wrote my first blog about PDA and Play Therapy, and since then my knowledge of PDA and my confidence in the benefits of using Play Therapy with children with PDA has continued to grow. But with that increase in knowledge and confidence has come even more questions. Questions about the source of the anxiety that drives demand avoidance, and about the mechanisms through which play therapy can assist children to cope more effectively with the world around them.

These questions have lead me to form the view that looking at PDA through a trauma-informed lens can help therapists, parents and educators better understand a child’s needs and reactions, and find more effective ways of supporting them.

Now I should clarify that I am not saying that PDA is caused by trauma – I believe the current view that PDA is a profile of behaviour that presents as part of an Autism Spectrum Disorder. However, what I am saying is that the reaction an individual with PDA has to a demand is similar to a trauma response (an extreme emotional reaction to a distressing event, where the stress experienced exceeds the individual’s ability to cope), and by viewing it in this way, we are much more likely to be empathetic and open to adapting our behaviour to support a child’s needs, and have a better understanding of what individuals go through every day.

One of my PDA clients, aged 8, recently likened being at school to being controlled by a remote control, and I think it is a fantastic analogy to consider the experiences of individuals with PDA. Imagine this if you can … someone from work that you don’t know very well has been given a remote control that controls everything you do. You are completely under their control and they can make you do anything they want. How would you feel? Would you be calm and trust that this acquaintance will make sure you hold onto your dignity? Or would you panic at the prospect of being made to do something embarrassing and having no control over it? Most of us would feel the latter – a sense of panic; of being completely out of control; of being helpless and at the mercy of this person they don’t trust. This event may also, in some of us, trigger a trauma response that could go on to impact on our future wellbeing and behaviour.

Now imagine that the person with the remote is you, and the person being controlled is a child with PDA. Further, consider that every demand placed on them is like you controlling them with your remote. Can you see how distressing and how damaging repeatedly experiencing this situation would be?

Given that play therapy in its many forms is an evidence-based intervention for children who have experienced trauma, it makes even more sense to me now that it could be a pathway for healing and developing effective coping skills in children with PDA.

For the children with PDA that I work with, the overwhelming ingredient to positive experiences and therapeutic progress is trust, and that is only gained through developing a strong relationship and having a safe and secure place for them to be. Once that trusting relationship is established, and the child has the opportunity to take control of their life, even just for the hour that they spend with me, they are free to play, make, destroy or talk through their feelings and experiences at their own pace and in their own way. I believe this is where therapeutic progress can be made.

While there has been considerable focus over the last few years on how children with PDA can be supported by parents and educators at home and at school,  there seems to be little information available on how to help individuals with PDA to reduce their anxiety through therapy. It may be that the challenging way that individuals with PDA often present has created a barrier to children receiving support because more traditional ‘talking’ therapies don’t seem to work. But this is where I think Play Therapy fits in.

The more I work with children with PDA and their families, the more confident I feel that play-based, flexible interventions and trauma-informed practice can be utilised to support children with PDA to feel in control and capable of managing any challenges they might face.

 

The Danger of “One-Size-Fits-All” Behaviour Management Programs

October 22, 2018 / / No Comments

Recent discussions with several of my families about behavior management has prompted me to write about something I am becoming increasingly concerned about: The ‘one-size-fits-all’ behavior management program.

There are any number of programs around at the moment, often manualized and with research behind them, that are being sold to families as guaranteed solutions to their child’s behavior problems. How can any program guarantee success? Unfortunately, these programs often blame parents for their inability to follow the program correctly if a child’s behavior does not improve, rather than questioning the suitability of the program to the individual child.

While behavior programs themselves can be helpful, and there are some common elements that are important in any intervention created to change a child’s behavior, the notion that any one program will be effective for all children is outdated and misguided, and unfortunately can cause a child and family unnecessary stress.

This is particularly evident in the world of Autism Spectrum Disorders. Autistic children often demonstrate challenging behavior, sometimes including meltdowns and aggression, and families are desperate to find something that will help them support their children to behave more appropriately and manage their emotions more effectively. So when a program promises results, parents are understandably eager to sign up and see improvement in their child. But what they are promised is often not what they get, not because the program is necessarily ineffective, but because it does not work for their child.

The problem is that lumping all Autistic children together, and expecting them all to respond to the same intervention strategies, ignores the individual characteristics that make any child unique and the underlying reasons for the behavior. Factors such as personality, cognitive functioning, adaptive skills, sensory sensitivities and anxiety, can all impact on how a child responds to intervention, and parents are the most qualified people to figure out what intervention is going to suit their child best.

This has been illustrated most recently by the difficulties faced by parents of children with Pathological Demand Avoidance (PDA), a subtype of Autism Spectrum Disorder characterized by severe anxiety, when they are trying to advocate for the fact that their children require a behavior management approach that is different to that usually recommended for children with ‘typical’ presentations of Autism.

Children with PDA experience anxiety at such a high level that even simple, everyday demands are met with defiance due to the child needing to be in control to feel safe. Many parents of children with PDA report undergoing years of being blamed for not being consistent enough, not being hard enough, and not setting clear enough limits, because they were being told to use strategies that usually work for Autistic children, and they were just not working.

Thankfully, a group of parents were able to make themselves heard and found professionals that would listen, leading to the development of strategies that are more likely to assist their children and be effective in supporting them to manage their behavior, as well as gaining recognition for the PDA profile.

This example is important for a number of reasons. Firstly, it shows that parents know their children better than anyone else, and secondly, it illustrates that behavior management strategies need to be tailored to the individual child to be most effective.

When considering a behavior management intervention for any child, it is important to consider a number of factors including how a child communicates, their cognitive level, their skills in regulating their own behavior and emotions, their sensory sensitivities, what they are motivated by, and most importantly, the reason for their behavior. With this information, a plan that is suited to a child’s individual needs can be chosen or created.

It is important to remember that some children will respond well to firm rules and a reward system to reinforce appropriate behavior, while others will benefit from a more flexible approach that involves negotiation and collaborative problem solving. Finding the right approach may involve trial and error, but taking the time to find a system that works best for a child and their family will ultimately be most effective.

So parents, please do not be afraid to speak up if you feel that the strategies you are given to support your child don’t seem to be working; and professionals, don’t forget to listen to parents and work with them to find the best way to support them and their children.

Nothing in life is as simple as ‘one-size-fits-all’, especially when it comes to children, so if you are looking for support for a child’s behavior, please consider the individual and what strategies will best suit them, rather than trying to make the child fit the program.

Is Play Therapy the missing link in supporting children with PDA?

December 14, 2017 / / No Comments

I recently had a ‘light bulb’ moment while attending a Play Therapy Workshop at Deakin University. It was the kind of moment where something makes so much sense that you can’t understand how you didn’t see it sooner and why someone else isn’t already talking about it.

I was listening to two fantastic speakers talk about the importance of play for development and how children who may have missed going through developmental stages, perhaps due to trauma or disability, are likely to have ongoing social-emotional problems. The good news was that these children can often be taught the play skills they have missed to assist them to make progress in their social-emotional skills.

Then they introduced the idea of Non-Directive Play Therapy, a type of play therapy in which the child is given the opportunity to be fully autonomous in the session and choose whatever they want to do, while the therapist supports and engages them on the child’s terms – no questions, no demands, no direction. This type of play therapy allows the child to explore their innermost thoughts and feelings through play in a safe, secure environment with a trusted adult, and can lead to significant improvements in emotional regulation, social skills and relationships outside the therapy room.

Then the penny dropped – I know a number of children who have uneven development, have social-emotional difficulties and don’t cope with demands! They are my clients with Pathological Demand Avoidance.

Then I wondered – Could Non-Directive Play Therapy be the next step in supporting my clients with PDA?

It seems logical that a therapy that allows a child to be fully in control and free of demands would be perfect for children who are hardwired to avoid demands at all cost.

One of the most notable things I have found when working with these beautiful children is that they can become really good at understanding anxiety and emotional regulation, and knowing what they should do to appropriately manage their behavior, but they are so dysregulated and heightened that they just can’t access that information to manage their anxiety when they need to. It really makes sense to me that supporting children with PDA to process their emotions and experiences in an indirect way and in a non-threatening environment could be an effective way to assist these children to bring their social-emotional development to a level where they can consolidate it with their knowledge and make positive changes.

Obviously all children are different, and one therapy is not likely to work with all children, but learning about Non-Directive Play Therapy has given me hope that this is another tool we can used to reach a group of children that are notoriously difficult to engage.

I have decided to embark on my own adventure to further my knowledge and expertise in Play Therapy, and have enrolled in the Master of Child Play Therapy at Deakin University. My hope is to conduct my research project on “Non-Directive Play Therapy and PDA”, and to be able to share my findings with families and professionals to increase understanding and supports for the PDA community.

In the meantime, I am happy to be able to support my clients with PDA and their families, and to continue to learn from them as the real experts in the field.

If you or anyone you know has experience with Play therapy and PDA, I would love to hear from you. You can contact me at raelene@okeydokey.com.au.

A Note about Pathological Demand Avoidance:

For those of you that haven’t heard about PDA, it is considered to be a subtype of Autism Spectrum Disorder characterised by extreme levels of anxiety which result in resistance and avoidance of demands. You can read more about PDA here: https://www.pdasociety.org.uk