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.

Making the holidays successful for children with Autism (and the family too!)

December 28, 2017 / / No Comments

With the festive season and end-of-year celebrations almost behind us, the prospect of surviving the next 4 weeks of holidays with the kids can be daunting, especially for parents of children with Autism.

Days spent at home, visits with friends and family, day trips and special activities are a potential minefield for children on the spectrum, many of whom rely on the day to day routine of school or kinder to bring some order and predictability to their lives.

So how can we support our kids with Autism to get the most out of their holidays, as well as accommodating the wishes of siblings and staying sane ourselves? Here are a few tips that may help.

Keep a routine

Creating some structure in an otherwise unstructured day can go a long way to minimizing the anxiety that holidays can elicit in children with Autism. While some children manage well with the changes that holidays bring, for other children it can be extremely unsettling. If your child needs the security of routines, keeping the morning routine the same each day (e.g. get up, have breakfast, brush teeth, get dressed) can be a great way to start. This doesn’t have to happen in a rush, like it might do during the school term, but the familiarity of following a routine and knowing what needs to happen next can be a great source of comfort. Alternatively, you may want to try introducing some new holiday routines like staying in your pajamas until lunch time, and this can be a lot of fun. The key here is to let your child with Autism know what is happening and what to expect, so they are not anxious about the unexpected.

 Use visuals

Regardless of a child’s level of language, visuals can be a powerful way of supporting a child with Autism to understand what is happening in their day and what to expect. Whether it is using a picture schedule to communicate the activities of the day, creating a social story to illustrate what a visit to the zoo will look like, planning out the week on a calendar, or writing a list of important dates and events coming up, visuals are a fantastic tool that can be used to reduce a child’s anxiety about changes in routine and activities that are new or unfamiliar.

Provide activity ideas

For many children with Autism, coming up with ideas of what to do to keep themselves occupied (besides the iPad or computer) can be challenging, resulting in a chorus of “I’m bored” that can drive any parent crazy. Surprisingly, this isn’t necessarily about a child being difficult, but more often a sign that their skills in generating ideas and imagining possibilities are delayed and that they need a bit of support. Spend some time brainstorming possible activities that your child can do at home either unsupervised or with your supervision (and get them involved in the process if you can), then create a visual board or list of all the possibilities that your child can refer to when they cannot think of what to do. You can add or remove activities depending on your availability and the day’s events, and to keep things interesting. For example, you may have ‘cooking with Mum’ on the list one day, but take it off and replace it with ‘water play outside’ on a day when cooking is not convenient. Making sure the equipment or toys needed for each activity are readily available will also make it easier for your child to be independent in their choices and play.

Schedule in ‘down-time’

Even for children and adults that love to socialize, and many children with Autism definitely do, being with other people and in different environments can be emotionally and physically exhausting. It takes a lot of energy to pay attention to everything that is going on around you, process sensory information, make sure you are behaving appropriately, predict what other people might do or say and engage in the activities being offered or conversations that are occurring. When you consider all these factors, it is little wonder that children with Autism are often ‘burned out’ after social interactions or may go into meltdown afterwards as a result. To support your child to manage the demands of these events, deliberately scheduling in some down-time at home can make a big difference. For example, spending the day at home after a big outing watching DVDs, building Lego or playing with water, whatever is calming for your child, will give them the time they need to recharge ready for the next adventure, and hopefully give you some time to recharge your batteries too.

Have realistic expectations

As parents, the holidays are often the time when we want to make opportunities for special outings and creating family memories, and we can become disappointed when our child with Autism ‘ruins’ our plans. I have found that this is usually more a reflection of us having unrealistic expectations of our child’s behavior than it is about the child themselves. While an event may be special to us, that doesn’t mean that a child is suddenly going to be able to manage their anxiety, behaviour and emotions any better than they would on a typical day. Consider what you can do to support your child to manage the best they can by preparing them for where you are going and what will happen while they are there, and be open to your child experiencing the event differently to you. While you may want him or her to enjoy the atmosphere and join in, it might be enough to expect that they are there with you but sitting quietly on their iPad with their headphones in because that is all they can manage right now. That does not mean that your child will never be able to participate more in the future – it just means that your expectations need to match your child’s abilities right now.

Set them up for success

In keeping with the idea of having realistic expectations, sometimes we inadvertently set our children up to fail by not recognizing their limits and pushing them too far. I am not saying that we shouldn’t help our children step outside their comfort zones – I think that is extremely important. What I am saying is that sometimes we do it too hard or too fast, and then get upset when our children don’t manage. For example, if you know that your child can only manage 30 minutes at a shopping centre before becoming distressed, planning a 3 hour clothes shopping marathon with them is going to end in disaster. Knowing your child’s limits and planning around them means that you might only attend an event or activity for a short amount of time, but have a successful and happy experience being there, instead of trying to make them be part of something they can’t manage, and everyone ending up upset because it didn’t turn out the way you wanted. Planning in this way can be particularly difficult when you feel like siblings are missing out because you have to cater to your child with Autism’s needs, but this can often be accommodated by having a parent or carer leave with your child with ASD, while the other parent or carer stays with the sibling, or enlisting the help of friends and extended family. While this may not always be ideal, the more positive experiences your child with Autism has in different environments, the more likely it is that they will develop the skills they need to participate more and for longer in the future.

Know your child’s signs of stress

As a parent, you know your child better than anyone else, and sometimes even better than they know themselves. For many children with Autism, understanding and regulating emotions can be extremely challenging and the cause of a lot of confusion. Although a child may have difficulty identifying when they are becoming stressed or overwhelmed, they often demonstrate behaviours that tell us how they are feeling, and if we pay attention we may be able to intervene before they get to boiling point. If you notice signs that your child is getting stressed, taking action immediately will be most effective. This may mean taking the child to a quiet area away from others, going for a short walk, or having a big cuddle. It can also be useful to have a ‘bag of tricks’ with you that includes some snacks, a favourite toy, some sensory objects, and maybe a phone or iPad, anything you know will help your child calm down and regulate their emotions and behavior better. Hopefully, if you get in early, your child will be able to calm and then get on with whatever it is they were doing. In helping them reset and calm down, you are teaching them a valuable lesson in recognizing their emotions and that taking action can help them feel better.

Have a contingency plan (just in case!)

While I would love to tell you that following all these tips will mean the holidays will go without a hitch, that is not the reality. Even the best laid plans can fall apart, and when you have a child with Autism, you never really know if or when the wheels will fall off. If, after all your careful planning and preparation, you child struggles to manage their behaviour or goes into meltdown, it is important to know what you are going to do. Planning how you will respond beforehand gives you the time and energy to consider all your options, decide on the best response, and be prepared to jump into action with confidence if the need arises. The more calm and in control you are, the better your child will respond, and the sooner you can resolve the situation. Depending on where you are and what you are doing, your plan might be to take you child to a quiet room to calm, or you might have no option but to pack up and go home as quickly as you can. Whatever your plan, don’t be afraid to stick to it regardless of the opinions of others. In a calm moment later on you can reflect on what worked and what didn’t, and change your plan for next time if you need to.

Although the holidays can be a challenging time for children with Autism, they can also be a wonderful opportunity to rest and recharge, have new experiences and make new memories. Whatever your plans for the holidays are, I hope you have a safe and happy time with your families.

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

 

How to Help Your Child Overcome Social Isolation

October 16, 2017 / / No Comments

As parents, we all want our children to have friends and fit in, but that can be challenging for some children, especially when they have difficulties with social skills.

Social skills allow us to have positive interactions with others, understand the feelings and behaviour of ourselves and those around us, and change our behaviour depending on where we are and who we are with. When a child’s social skills are delayed, it can be difficult for them to interact meaningfully with peers and make friends, leading to them becoming socially isolated either through being excluded by others or by isolating themselves due to being repeatedly unsuccessful in their attempts to join in.

The most concerning impact of social isolation is the negative effect it can have on a child’s wellbeing including reduced self-confidence and self-worth, loneliness, and the development of more serious mental health concerns such as anxiety and depression.

Thankfully, there are things we can do to help children develop the skills they need to be successful in their social interactions and find a sense of belonging at school or kinder.

 Identify Gaps in Your Child’s Social Development

The term ‘Social skills’ represents a wide range of abilities from recognising feelings in others through to navigating relationships, and everything inbetween. To be able to support your child to build their social skills, you first need to know where the gaps are. Ask yourself – What aspects of social interaction does my child find difficult? Do they have trouble reading the emotions of their peers, or engaging in the back and forth of conversation? Do they struggle to understand jokes or find it hard to join in? Knowing where the gaps are will help you to know where to focus intervention to help your child continue to develop their skills.

Teach and Practice Skills Needed for Social Interaction and Friendships

Once you know what areas your child needs support in, you can focus on teaching them the skills they need to be more successful in social interactions. For many children, explicit teaching of social concepts or rules will be necessary. Teaching can be done in many ways including reading story books, watching videos, role-playing and discussion of real situations. Once they understand a concept, provide opportunities to practice skills with parents and siblings to help them increase confidence in their abilities. Then encourage them to practice their skills with their peers, and assist them to reflect on their successes and their challenges.

Facilitate Playdates

Arranging play-dates with children from school can support children to feel included not just by helping them connect outside of school times, but also by increasing the likelihood they will have someone to play with in the school playground. To facilitate a successful play-date, you may need to teach the rules associated with having a friend to play, such as letting a guest choose what to play, or not deserting a guest to go and play something else on their own. It can also be useful to plan out the activities that are available and schedule in a snack or two to reduce the demands on the child to think of ideas and also reduce anxiety about what will happen and whether it will be successful. Regular play-dates help children make stronger connections with individual peers that can assist them in at school, as well as providing them with opportunities to practice their skills in a safe and familiar environment.

Help Your Child Use Their Strengths to Make Connections

While it is important to know what areas your child needs help with, it is also important to know what your child does well. Do they have a great sense of humour? Can they talk about dinosaurs for hours? Are they good at sport or computers? Do they have an amazing memory? Your child’s strengths can be used as a way for them to connect with others, particularly those with similar skills or interests. Joining a sporting club, cubs or scouts, a dance class or a gaming club may provide an opportunity for your child to practice their skills with like-minded peers who already have a common interest, making connecting a little easier.

Get Kinder or School Involved

Given the amount of time that children spend at kinder or school, it makes sense to get them involved in supporting your child’s social development. This can be done in a number of ways. For example, lunchtime clubs around a specific activity such as Lego or gardening can be a great way of supporting children that struggle with the unstructured time out in the playground. It gives children an opportunity to interact with peers around a common activity, with an adult there for support if needed. Other initiatives schools or kinders can employ include buddy systems, peer mentoring and small group classroom activities or games. The best way to get school or kinder involved is to talk to your child’s teachers about your concerns regarding your child’s social development, and work with them to create opportunities for positive social interaction.

With support and guidance, all children can develop the skills they need to develop positive peer relationships and have social success in the classroom and playground, allowing them to find the meaningful connections and sense of belonging that every child deserves.