There is no right way to play: How a recent article in The Conversation missed the point

March 16, 2023 / / No Comments

The topic of Autistic Play is something that I am really passionate about.

Phrases such as “There is no right way to play” have become more prominent in recent years as advocates from the Autistic community have argued that the play of Autistic children should be accepted as valid and legitimate rather than being seen as yet another skill deficit that needs to be addressed.

So, you can imagine my joy at seeing an article in The Conversation titled “Don’t forget play – 3 questions can help balance fun with supports and therapy for autistic children.” 

The article describes the new National Guidelines for working with Autistic children by the Autism CRC and highlights the power of play-based supports and the need for a balance between therapy and play.

This in itself is fantastic. I am a fan of the new guidelines and can see the potential for a big shift to neurodiversity affirming supports for Autistic children.

What the authors missed, however, is the true essence of play and the potential benefits of allowing all children, including Autistic children, to play in whatever way they choose.

Play, by definition, is widely considered to be chosen and led by the child, internally guided by thoughts and ideas, enjoyable and engaged in while in an alert but regulated / non stressed state. There are also many different types of play including construction, cause and effect, rough and tumble, imaginative, messy / sensory, and role play.

While it is widely recognised that during early childhood, Autistic individuals often display differences in the development of pretend play when compared with their neurotypical peers, there is actually very little information available about what natural play development looks like in Autistic children. 

Many assumptions are made about the intention and motivation of Autistic children based on what their play looks like according to neurotypical standards, instead of considering internal processes and play from an Autistic point of view. Just because an Autistic child’s play looks simple or repetitive from the outside, doesn’t mean it isn’t meaningful to the individual and beneficial to their development.

Autobiographical reports and limited research suggest that Autistic children engage in more sensory based play, tend to base play scripts on experiences and memories, and engage in social play differently to their neurotypical peers. But there is no evidence to suggest that this play is in any way less important for the child’s personal development than the play of other children. Why then, is there still a focus on Autistic children having difficulty playing in ‘traditional’ ways instead of focussing on giving them the freedom to play their way.

What message are we sending Autistic children when we are insisting that their play isn’t right and they need to be taught to do it differently?

I was pleased to see that the authors did acknowledge that Autistic adults are challenging the way clinicians work with Autistic children and encouraging them to accept each child’s way of playing. But they didn’t expand this observation to highlight its importance both in therapy and when a child has an opportunity for free play, and so the point could easily be missed.

If we are truly going to suggest that practitioners work with Autistic children in ways that “honour their childhood”, then we need to accept Autistic play as the meaningful and joyful activity that it is. 

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A link to the original article from The Conversation:

Don’t forget play – 3 questions can help balance fun with supports and therapy for autistic children.

For more discussion of Autistic play see:

The Little Black Duck

”Don’t change Autistic Play. Join in.”

“Autistic Play is Appropriate Play.”

Why Social Skills Training has to go!

January 14, 2022 / / No Comments

In the 15 years that I have been a Psychologist and worked with children and families, one of the most common goals set for Autistic and other Neurodivergent children in therapy is to improve social skills. 

This push for Neurodivergent children to improve their social skills has come in part from the diagnostic criteria for Autism which describes deficits in social communication and interaction as a defining feature, so there is an automatic assumption that any Autistic child needs to have help with social skills. In addition to this, parents see their children being left out or struggling to interact with peers, or Neurodivergent children themselves feel that making friends is hard for them, and the solution offered is for the child to learn the social skills they seem to be lacking.

While the motivation for this therapy goal is usually well meaning – parents and professionals want children to feel like they belong, make and maintain friendships and connect with people in different settings through conversation – the underlying premise is that Neurodivergent children need to learn how to socialise like Neurotypical children so that they can fit in.

To fulfill this need for improving the ‘impaired’ social skills of Autistic and other Neurodivergent individuals, professionals and academics have created numerous social skills curriculums ultimately designed to teach Neurotypical social skills to Neurodivergent children – I even created one myself a few years ago! But as the wonderful Maya Angelou said “Do the best you can until you know better. Then when you know better, do better.” And now I know better.

The problem with many of these curriculums is that they suggest that there is only one ‘right’ way to interact socially with others and that doing it differently is wrong and unacceptable – when in reality there are big differences in the way that people socialise even within the Neurotypical community. Then when Neurodivergent children are taught the ‘right’ way and use these skills in social interactions, they sometimes find that they are rejected because they are using the skills in a rigid way or have difficulty applying them in the moment, or they might experience significant emotional distress over time due to pretending to be someone they are not when they are with others (e.g. masking).

Recent research now shows us that Autistic social skills are just different to the norm, they are not actually impaired. In other words, there appears to be a cultural difference between the way Neurotypical and Neurodivergent individuals communicate and interact socially. When individuals from two different cultures socialise, it can sometimes seem awkward because each individual has different social understanding and expectations. This can also be true of interactions between Autistic and Neurotypical individuals. It is not the Autistic individual’s ‘impairment’ that makes the interaction awkward, it is instead likely to be a mismatch in communication and social interaction styles, and it can be overcome by increased understanding and acceptance of cultural differences from both individuals. It also makes sense then that when two Autistic or Neurodivergent individuals socialise, they are likely to find their interaction more comfortable because their communication and interaction styles are culturally aligned.

Now, it is important to note that this does not mean that Neurotypical and Neurodivergent individuals can’t socialise and be friends – we make friends with individuals from different cultures all the time! But to do this we need to change the narrative around Neurodivergent social skills from being ‘wrong’ to being ‘different’ and be accepting of those differences. 

This change in narrative needs to happen in two ways:

1. By helping Neurodivergent individuals see that they don’t have to change who they are to socialise and make friends, and that there is nothing ‘wrong’ with the way they communicate.

2. By educating children about the different ways that individuals communicate and socialise and to promote acceptance and understanding of those differences.

How are Social Groups different to Social Skills training?

The Social Groups that we run at my practice aim to provide a safe space for children and adolescents to connect with peers around areas of common interest. 

Having themes for the groups such as Minecraft, Lego, Baking and Slime provides the opportunity for the children attending to communicate and connect around a shared interest, reducing some of the anxiety around meeting new people and allowing them to socialise as much or as little as they want to while engaging in activities they enjoy.

Of course, we do discuss with the children what guidelines we might want to have in place to keep everyone safe and happy, with rules such as ‘no put downs’ and ‘hands, feet and objects to yourself’ being common place. But, what we don’t have is expectations around eye contact, sitting still, or staying on topic, or preconceived ideas about what having fun and being connected might look like. 

We do not insist that the children complete specific learning tasks, practice specific social skills, or blindly comply with our directions. Instead, we create an environment where children can play, create, connect and communicate in their own ways, with allied health staff present to offer support and guidance when needed. This support might take the form of encouragement to ask a peer for help, brainstorming with a child to problem solve a challenge or conflict, or using distraction and humour and a quiet space to help a child regulate and prevent a meltdown. Staff are not there to ‘instruct’ children on how to socialise, but to provide perspective, an opportunity to collaborate, and their unconditional positive regard.

When we provide children with the space and opportunity to be with likeminded peers doing something they love, an amazing thing happens – they find ways to connect. The more skilled and knowledgeable children help the inexperienced group members. The confident children encourage the anxious ones. They share ideas, facts and tips, or sit quietly and absorb what is happening around them. There are mistakes, misunderstandings and conflict too, but the children figure out their own solutions or staff are there to gently assist. 

These are not children who need to learn how to be social, they need the confidence to be themselves and to connect with others who accept them for who they are. 

Then what do we do to help children when they say they are lonely and want to make friends?

When Neurodivergent children are aware of their differences and want to connect with their Neurotypical peers, there are many things we can still do to support them to better understand themselves and their peers. But what we don’t do is teach them to act like Neurotypical children.

We can assist Autistic children to understand their own unique communication style, how they express emotions, what causes them stress and what helps them feel better, and what belonging, connection and friendship means to them. Through helping them better understand their thoughts, feelings and experiences, they can begin to advocate for themselves in relationships with peers, and seek out connections that meet their needs.

Then we can support children to understand how Neurotypical people think, feel and communicate, and support them to consider the needs and perspectives of others when they are interacting with peers. This does not mean that a child has to act in a particular way, rather they are helped to understand the perspective of their communication or their social partner so they can make a choice about how they approach the situation.

It is important to note that throughout this process, we must acknowledge the feelings and perspectives of Neurodivergent children as real and valid. For example, we don’t tell children that they shouldn’t be upset about something, or that their reaction was inappropriate for the problem they were facing. We acknowledge their experiences, support them to understand what is happening in their bodies and brains, and problem solve with them to hopefully help them reduce the likelihood of distress in the future. The flip side of this is to acknowledge and accept that for Neurodivergent children, happiness and connection may look different. A Neurodivergent child may be content to be with friends in the classroom but need alone time at recess and lunch to reset, or consider the online friends that they have never physically met as real friends, or feel happy and accepted playing alongside their friend on the Xbox and not talking. 

Whether in a social group or attending individual therapy, by supporting Neurodivergent children to meet their own social goals while being true to themselves, we can help them build confidence to seek out people and experiences that will meet their social needs, whatever they may be. 

A final note:

Now, you may have noticed that so far all the support mentioned focusses on the Neurodivergent child, and you may be thinking – “Shouldn’t Neurotypical children be learning about Neurodivergence?”

The short answer to this question is a resounding YES! But it is complicated by the fact that Neurotypical children who have good Neurotypical Social skills don’t seek out support to learn about the ways other individuals communicate. I think this is where schools can help, but I will have more to say about that in another blog!

How could you not know? – My journey to Autism diagnosis as an adult.

April 3, 2021 / / No Comments

How could you not know you are Autistic?

Such a seemingly simple question. But the answer for me and many other people diagnosed as Autistic in adulthood is far from simple.

So, at the age of 45 – with my own Autistic children who are almost adults themselves, and after working with Autistic children and families for over 15 years – here I am with an official diagnosis of Autism.

It came with a sense of relief and comfort, a feeling that it really fit, but it did not come quickly or easily. This was a journey of discovery that was years in the making.

I was lucky to grow up in a loving and supportive family, who accepted me as I was and still do, something I know many people are unable to say. But I have always felt different – a sense of distance and awkwardness with my peers that has followed me throughout my childhood and into adulthood.

There were times where I was labelled ‘bossy,’ ‘oversensitive,’ and a ‘know-it-all,’ and times when I have said and done things that made me want to curl up and hide with embarrassment. But there have also been times when I have made connections and found people who made me feel like I belonged, and opportunities and experiences that, looking back, may not have happened without my differences.

When my youngest son was diagnosed Autistic 13 years ago, it did not occur to me that I might also be Neurodivergent. I think like many parents of Autistic children, when their child receives a diagnosis, they wonder who in their family the child may take after. And that was me – looking over my family tree and identifying several ‘quirky’ characters but not looking within.

Only those who know me well would know of some of the challenges I have faced throughout my life – depression and anxiety, self-doubt and loneliness – challenges that many in the Autistic community face every day. And while these are certainly challenges faced by the wider community too, I can now see that my experiences have been shaped by my neurology.

Why then, with a history of social challenges, sensory sensitivities and feeling different, and a career working with the Autistic community, has it taken me so long to recognise that I am Autistic?

The only answer I can come up with to this question is that I wasn’t looking for it.

I have also been privileged to work with and support the Autistic community over many years and will continue to do so, but had not considered that perhaps my affinity for my clients and my ability to understand and support them might be linked to my own neurology.

Consequently, it was only over the last few years that I became more aware of my differences, and began to think that I was in fact neurodivergent. With that realisation, and the encouragement of family and friends, I pursued a formal assessment, and was finally diagnosed as Autistic in March this year.

Now, as I start a new journey to understand what being Autistic means to me, and to find my authentic self, I encourage any adults out there that think they may be neurodivergent to embrace their differences, and explore their neurology and what it means for them.

Autism acceptance is not just about accepting the differences we might see in the Autistic community. For some of us it is also about accepting and understanding our Autistic selves.

Talking with your child about their Autism diagnosis – When is the ‘right’ time?

June 1, 2020 / / No Comments

Over the last few weeks I have seen an increasing number of Facebook posts about how to talk to a child about being Autistic. As many of you would know, this is an area I am very passionate about and also the topic of my first book ‘Talking with your child about their Autism diagnosis’ so I wanted to join the conversation by sharing what I have learned through supporting parents to talk to their children about Autism as well as from my own personal experience.

One important way to learn about how to approach this conversation is to listen to Autistic voices, and there are some amazing Autistic adults and children that have shared their advice on what to tell a child about their diagnosis and the best way to approach the conversation. Children need to be supported to understand what Autism means for them in a positive and empowering way, and hearing about the lived experience of those in the Autistic community can help parents to do this. The ‘I Can Network’ recently collated some Autistic-led sources of information on this topic and you can find the link to their information below.

In addition to knowing what to tell their child and how to approach the conversation, one of the most common questions I am asked by parents is “When should I tell them?” There are different opinions regarding when a child should be told, but there is no ‘perfect time.’ For me, the ‘right time’ depends on the child and the family and what works best for them.

In deciding when to talk to your child about their diagnosis, there are a few things that can be helpful to consider.

Earlier is better.

Children don’t need to be told by a specific age, but it is generally thought that earlier is better. Obviously, there are big differences in the ages that individuals are diagnosed with Autism, some as young as 18 months and others not until they reach adolescence or adulthood, so the time that an individual can be told varies considerably. I think that the notion of telling a child or adolescent early in their journey allows for greater growth and understanding of what being Autistic means for them.

It is an ongoing process or journey.

When you introduce your child to their diagnosis, you are not going to sit down and have a five minute conversation with your child and then not have to talk about it again. The conversation, however you choose to start it, will likely be an ongoing process that evolves over time, as your child’s understanding of Autism develops.

My own journey discussing Autism with my son started when he was 5 and has taken many twists and turns over the years. Questions such as “Where is my Autism kept?”, and “Does my teacher know I have Autism?”, were answered as best I could when they were asked, with positivity and factual information. Now 16 years old, he has a much better understanding of his Autism, but there are probably more questions and a deeper understanding still to come.

As children get older, their questions are likely to be more complex, and it is important that they have people they can go to in order to receive reliable and factual information. Linking a child or adolescent with a mentor who is Autistic, to provide information that is real and relevant, can be really useful and empowering to the child. Seeking support from professionals with understanding and experience of Autism, and educating yourself about Autism and the experiences of Autistic children and adolescents, can also assist you to be able to answer questions when they come up or help find the answer if you don’t have it yourself.

Choose the time that is right for you, your child and your family.

There are several different approaches to choosing when to tell your child about their diagnosis. Some parents discuss Autism immediately, from the time of diagnosis, others may wait until their child is a certain age or developmental level, or starts to ask questions about differences between themselves and their peers. As I have said earlier, the right time depends on the individual, so I will discuss each of these approaches to help you find one that works best for you and your family.

Taking your cue from your child.

Some professionals and parents say that talking to your child about their diagnosis when they are aware of difference in themselves and other children, is a really good time.

When they are asking questions like, “Why do I have to go to appointments all the time?” they have obviously become aware that they are not doing some things the same as some other children. How great that awareness is may differ, but if they have that understanding and they’re curious about that, it is a really good opportunity to bring up the subject of Autism and talk to them about it. If they are asking questions, hopefully they are ready for whatever answers you have for them.

Alternatively, they might not be directly asking questions, but they might be noticing and commenting on differences between themselves and others, like that they are taller than some other kids at their kinder or some of the kids at school wear glasses and some don’t. Obviously, unlike Autism, those differences can be seen, but that awareness of physical differences gives you an opportunity to start to bring up why they themselves might be a bit different to other kids.

Talking about Autism from day one.

Another option is to talk about Autism from day one, from the time of diagnosis. The idea is to make the word ‘Autism’ or ‘Autistic’ just a part of everyday conversation and use it to describe things that the child is doing, to explain why they may or may not be able to do something or why they need to see professionals such as Psychologists and Speech Pathologists.

Stephen Shore, a professor of special education at Adelphi University, and an author and Autism advocate, described in an interview with Dr Neal Goodman from Boston Children’s Hospital that his parents just talked about his Autism in a matter-of-fact way from as long as he could remember.

“It was very matter of fact,” he explained. “My parents used my diagnosis to explain things to me, like ‘that’s why you’re going to the Putnam School’ or ‘that’s why you’re going to the doctor today.’” When asked about his initial reaction when his parents told him about his diagnosis, he said, “I saw Autism as no big deal. It was just matter-of-fact.”

Making the word ‘Autism’ part of your everyday vocabulary can help a child accept that being Autistic is just part of who they are and is certainly nothing to be scared or ashamed of. It can also assist other family members to understand the child’s strengths and challenges in relation to their Autism in a more normalised way.

Wait until your child has the capacity to understand the diagnosis.

For some parents, waiting for a time when their child is likely to understand what being Autistic means, feels like the best option. This will vary greatly between individuals, and will depend on the child or adolescent’s cognitive and language abilities, as well as how engaged and aware they are of their environment.

It is important to also consider what it is you want your child to understand. If you only want them to have an understanding that the word ‘Autistic’ applies to them in some way, then this may happen early in a child’s development. However, if you want your child to understand more specific information about Autism, such as its neurobiological basis and the pattern of behaviours that characterise it, then it is likely that waiting until your child is older will be necessary, and the information will need to be tailored to the child’s developmental level.

While individuals may vary in their ability to understand what Autism means for them, it is important that they are still given the opportunity to have awareness of being Autistic in whatever way they are able.

Involving your child in the diagnostic process.

For school-aged children and adolescents in particular, the diagnostic process can be experienced in vastly different ways. For some, it is an opportunity to do special activities with a professional that is totally engaged and interested in them. For others, it can be a source of stress and confusion, as the child is being ‘tested’ for a reason they may not fully understand.

Even when a child has not been told they are being assessed, they are often able to pick up on the fact that they are visiting multiple doctors and professionals and have a sense that there is something going on. A great example of this is an 8 year old girl who was coming to me for some help with social skills and anxiety. After a few sessions, her parents decided that they would like to do some more formal assessment to investigate a possible Autism diagnosis. As she was used to our sessions running in a particular way, I explained that we had some different things to do one session, and we completed a play-based Autism assessment. Even though no one had mentioned assessment to her, on the way home in the car she told her mother that she had done a test with me that day.

If your child is old enough to be aware of the process, talking to them about the fact that they are seeing some professionals to help figure out how they can be best supported at school and at home, or to assist them with some of the difficulties they may be experiencing, can be a great way to broach the topic of assessment. Then, if your child does receive an Autism diagnosis, you can further that discussion by explaining what kind of information was gathered during the assessment and what that means for them.

Whenever you decide to talk to your child about their diagnosis, it is important that you have accurate information and feel confident to give your child a positive message about being Autistic. Although the timing for the conversation may be different between families, children should always be told about their diagnosis. The decision about whether a child embraces their neurodivergence (or not) should always be their choice to make.

Links:

The I Can Network

Talking with your child about their Autism Diagnosis: A Parents’ GuideTalking with your child about their autism diagnosis

 

 

 

 

 

 

Adapted and updated from Talking with your child about their Autism diagnosis: A Parents’ Guide, written by Raelene Dundon and published by Jessica Kingsley Publishers in 2017.

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.