Audio transcript (edited)

DR JADE MCEWAN: Welcome, everybody, to today’s webinar and thank you for coming.  My name is Dr Jade McEwan and I’m a research fellow at the Australian Institute of Family Studies.  I’ve been a researcher and a practitioner focused on issues affecting people with disability for over 20 years, and am the mother of a wonderful bright spark of a child with autism. I’d like to start by acknowledging the Wurundjeri, Woiwurrung and Bunurong people of the Kulin Nations, who are the traditional owners of the lands in Melbourne where I’m speaking to you from today.  I also pay my respects to elders past, present and emerging, and extend that respect to elders and indigenous Australians online with us today.  

Before we start into today’s exciting webinar where we’ll be discussing a great topic about how professionals can work alongside parents of children with disability who communicate through behaviour. We will look at this subject from several vantage points.  One, we’ll look at what the research literature tells us.  Two, we will look at the experience of practitioners of working alongside families.  And thirdly, we will look at the focus of a parent of strong, vivacious, creative children who communicate through behaviour. All of which will tell us, collectively tell us the experience of supporting parents of a child who has a disability and who communicates through behaviour.  For many children with disability, communicating their needs and preferences with others can be difficult.  They may struggle to process information relayed by others, or find it difficult to verbally express their needs and preferences.  This can lead to frustration which can manifest in heightened emotions and behaviours.  Navigating daily life in a world designed for verbal communication can be very challenging for these children, as well as the parents who care for and support them.  

Today we’ll be covering specifically how behaviour can be a form of communication for children with disability, which approaches and supports can help both parents and children identify and respond to nonverbal communication, parent experiences of providing care to a child with disability and receiving behaviour support.  The information will be at a somewhat introductory level and is aimed at supporting practitioners and service providers working with parents of children with disability.  While many of you online today work in the context of the NDIS, we won’t be covering the NDIS services, frameworks and practices today, rather we’ll be focusing on a general context of supporting families and children who communicate through behaviour.  

I’d like to introduce my esteemed colleagues who are with us here today. Firstly Cat Strawa, senior research officer with the Australian Institute of Family Studies, Child and Family Evidence Team.  We are also lucky to have with us today Cat Lancaster, principal practitioner in Disability Mental Health for Life Without Barriers.  And we also are blessed with the presence of Emily Batey, counsellor, life coach and mother of three strong and talented girls.  Before we commence just a few housekeeping rules that I hope we can collectively respect, the first of which is there will be a live question and answer session at the end of the webinar.  Please place your questions via the questions box in the GoTo Webinar dashboard.  The webinar is being recorded and it will be available in approximately two weeks.  Please subscribe to the AIFS newsletter for further information about where to access that recording.  

There are handouts which will be available under the handouts section of your GoTo Webinar control panel, and there will be a short survey at the end.  If you can spare the time we would greatly appreciate it.  And lastly, the topic we explore today is one of significant importance, however it isn’t possible to cover all the rich and meaningful issues that underpin it.  So today we will cover broadly several topics of significant importance, but not everything.  That said, I’d like to turn my attention to my esteemed colleague CAT STRAWA.  As I say Cat is a senior research officer with us here at the Australian Institute of Family Studies where she works in the areas of evidence synthesis, knowledge translation and research impact.  She has particular interest and expertise in areas of human rights, sociology and supporting child and family welfare practitioners to make evidence-based decisions.  

Thank you for joining us Cat.  We’re very lucky to have you.  I would like to start by asking you a little about your research.  You recently reviewed the evidence base pertaining to the effectiveness of strategies to support parents and children with disability who communicate through behaviour, often referred to as behaviour support.  Can you tell us about some of your findings?  

CAT STRAWA: I can.  I’ll give you a bit of background on the research project as well so we can put those findings in context.  We engaged with researchers, practitioners and parents of children with disability to try to understand the key issues they were facing and what they wanted more information or evidence on, and support for children’s behaviours that can be concerning or challenging was a key theme, and there seemed to be a particular interest in which interventions can be used by or delivered to parents to support their child’s behaviours.  So we reviewed the evidence on which interventions were effective for supporting children’s behaviours of concern for children specifically with intellectual disability or autistic children.  But we included interventions that are specifically either delivered to parents or by parents and carers, which we referred to as a broad group of parent-focused interventions.  

For behaviours of concern, we use that to refer to any behaviour that poses a risk to a child’s health and safety or to others around them, or a behaviour that can act as a barrier to their participation in the community.  And we wanted to understand what do parent-focused interventions look like for behaviour support and what do they include, and what characteristics are common across parent-focused interventions that are effective.  And we found the quality of the evidence was really varied.  So there were lots of different study designs, and to answer our research question about the effectiveness of interventions we only looked at the evidence in randomised control trials, and that’s a specific type of research. And we did that because that type of study is often considered the best evidence for understanding the effectiveness of interventions as the studies are designed in a way that we can really see if the interventions are contributing to the outcomes, like children’s behaviour outcomes.  

And it helps to minimise things like bias, other unintended external factors that can affect a child’s behaviour other than the intervention that we’re interested in.  Other study designs are really important still like qualitative studies that give us that rich, in-depth information about the experiences of people with disability and their families, and they can be best suited to other types of research questions about contextual factors or people’s perspectives, and should definitely be considered alongside the type of evidence that I’ll talk about today.  And I just wanted to note before I jump into the findings, which I will do very shortly, is that we looked at terminology around behaviours of concern, and we also searched for research using terms like ‘challenging behaviour’ and ‘problem behaviours’ because that language is really commonly still used in research particularly, and in some kinds of clinical contexts.  

But we wanted to acknowledge that different language is often used in practice, especially when we communicate with families, and many people, – and there was some research that advocates for language around ‘environments of concern’, and ‘environments that can elicit concerning behaviours’ rather than focusing on an individual child and their behaviour.  And families and members of the disability community will have different preferences for the language that we should use when we refer to their individual experiences.  So in our review we talk about supporting parents to reduce their children’s behaviour of concern, but we know that language might look different in different contexts as well.  So we started our review by looking at that what do parent-focused interventions or behaviour support look like, what does parent training mean and what does it include.  

And we used existing frameworks from research to identify a difference between something like a parent support intervention that focused on things like educating parents or supporting their wellbeing without any involvement from their child, and they usually aim to increase parents’ knowledge about their child’s diagnosis, or increase the parents’ capacity and wellbeing, and by doing that they were able to indirectly support children’s behaviours.  First is something called a parent mediated intervention which were more skills focused, and that aimed to build parents’ capability to actually deliver supports directly to their child.  And that’s where parents were trained or coached either in groups or one-to-one by practitioners and researchers to deliver maybe a specific intervention or develop behaviour support skills that they can use at home.  

The evidence in the review highlighted that these parent mediated interventions were studies most often and they were really frequently found to be effective, so that practitioner to parent to child model.  And a few studies did find that something like educating parents can be just as effective as more intensive coaching or training.  But providing basic education to parents on things like their child’s diagnosis may be able to work for some families and improve some children’s behaviours, but overall those one-to-one training and coaching interventions that supported parents to develop skills that they can use at home and deliver programs at home were more frequently found to be effective and led to slightly larger improvements in children’s behaviours overall.  

Just a note that nearly all parents included in the studies were female, so there seems to be a bit of a lack of knowledge on how these interventions may work for fathers, male caregivers, gender diverse caregivers.  It might be the same as mothers, but we just don’t know from the evidence that we reviewed.  And we also don’t know the cultural safety of the interventions because there were no First Nations or indigenous families included.  A few family with culturally and linguistically diverse backgrounds, but most participants were Caucasian, middle income households.  But overall those parent mediated interventions that trained or coached the parents to provide support or deliver a specific program directly to their child were effective at improving children’s behaviours.  

The full findings of the review along with the methodology, implications for practice and everything will hopefully be published later on this year.  

DR JADE MCEWAN: Marvellous, thank you Cat.  That was very comprehensive.  Very grateful for your research and for sharing that with us today.  I did have some additional questions, but you were so comprehensive that I actually feel you’ve answered them very succinctly, one of which was about the trends of the positive focused strategies that yielded the positive benefits for both parents and children who communicate through behaviour.  Do you have anything more to add on that specific question or –  

CAT STRAWA: Yeah definitely, I think the parent focused interventions that were effective were really varied.  So I talked about those kind of parent mediated interventions that trained and coached parents to develop behaviour support skills to use at home, but in terms of the format that they delivered that in and the specific program behind it, some of them were really well established, like Stepping Stones PPP that many people may know, parent management training, training parents via telehealth to deliver functional communication training, and some used broader approaches that can include lots of different programs and supports like positive behaviour support.  So there was a lot of variation in that, but most of the parent focused interventions that were effective were based in behaviour theory.  

So social learning theory by behaviour analysis, also called behavioural interventions, and some of the people online today will be really familiar with these approaches, the criticism of them, and for others online today this may be new information but a very simplistic explanation is that this approach generally focuses on understanding children’s behaviours and then finding ways to promote positive behaviours.  And we know there are other theories and approaches to supporting children with disability out there, like attachment based or developmental theories, but they just didn’t commonly feature in the research when we look specifically for the evidence in randomised control trials on interventions designed to support parents with their children’s behaviours.  And it tells us that behaviour interventions can be effective, but also that’s what most of this type of research has focused on so far.  

But one thing the effective behavioural interventions really commonly did was use a functional approach to behaviours, and that tried to understand the antecedence, the functions and the consequences of children’s behaviours, and then support parents to find appropriate ways to either alter the children’s environment so the behaviour is no longer needed, or support them to find ways to teach children alternative behaviours to communicate or fill that function.  Some interventions did it really explicitly like training parents to deliver individual functional assessments alongside a trained practitioner, others did it kind of using the principles of a functional approach and just focused on teaching parents that generally they can understand that children communicate using behaviours and these behaviours have functions.  

When parents were trained to deliver particular programs or support techniques there wasn’t actually any evidence, or very strong evidence on how accurately they needed to do that for it to be effective.  It wasn’t measured very often, and some evidence suggested that how accurately parents deliver an intervention to their child is really important.  Other evidence said even when parents weren’t delivering interventions to 100% accuracy it was still really effective at improving children’s behaviours.  So we didn’t have any conclusions on that.  I guess while all of that isn’t necessarily new information, the overall evidence reinforces our knowledge that parents can be trained to effectively deliver behaviour support to their children, particularly ones that were based in behaviour theory, so that was the parent mediated interventions that were behavioural.  And interventions of varying format and intensity can be effective.  

There wasn’t a specific way they had to be delivered for them to work.  Some of them were telehealth, some of them were in person, some of them were groups, other were individual.  Lastly a functional approach to behaviours was shown to be effective, and that functional approach to behaviours could be used by a lot of different people in a lot of different ways as well.  

DR JADE MCEWAN: Well thank you, once again very detailed and comprehensive answer.  Thank you for your efforts in this meaningful topic, and I’m sure that the entire audience is aware of this but Cat referred to the commonly ABC, antecedent behaviour and consequence, antecedent meaning what happens before a behaviour, behaviour of course during the behaviour, and then the consequence, what occurred following the behaviour.  Thank you for that Cat, very valuable indeed.  I now turn my head to Cat Lancaster.  Cat Lancaster is a senior leader and clinician with over 20 years’ experience in the social services sector focused on improving the quality of life of individuals through innovative applications of positive behaviour support and person-centred practices.  

Cat is Director of professional practice at Life Without Barriers, disability and mental health where she heads the Centre for Practice Excellence which is her responsibility for end to end practice design, implementation and assurance.  We’re extremely lucky to have her.  Cat, thank you for your time.  I guess one of the first things I’d like to ask you in your great wisdom and experience is we often hear the terms challenging behaviour and behaviour of concern in reference to children who communicate through behaviour.  Can you explain for ourselves and our audience how you define these terms?  What do they actually mean?  

CAT LANCASTER: Thanks Jade, and thanks for that very lovely introduction.  I’m almost embarrassed.  Behaviours of concern is definitely a term that gets bounced around, and I think one of the first things I want to say is it’s not just about kids with disabilities, it’s not even just about kids, it’s just about people, right?  So we all do things which from time to time can be perceived as concerning to somebody else.  So I think one of the things that’s really important for us to understand is when we’re talking about this it’s got a broader application, and I don’t want to see it pigeonholed to just children with disabilities who display these behaviours.  Then going back to one of the things that Cat was talking about around the functional approach, that is the key.  

I think the key is for us to understand that behaviour is just communication.  No matter how weird and wacky that behaviour may seem to us or to others passing by, it is the best way that individual knows how to get across their message or meet their need, and when I say best way I mean the most expedient generally, or what they think of as the most effective way to meet that need.  So in that moment that’s what they come up with.  And to us it can seem like whoa, where did that come from, but that’s their need driving that expression.  So then concern is really about making – how it impacts their ability to interact with others, whether it causes harm or whether – I love how Cat talked about whether or not it impedes their engagement.  I think when we think about behaviours of concern it becomes a concern if it has an impact on their quality of life.  

Does it stop them or the people who love them doing the things that they want and need to be doing.  And if it is, if it’s having an impact on them or their family being able to participate in the things that are really important to them whether it’s going out for a family dinner, going to school, having friends around or an evening at home, then it’s a behaviour of concern because it’s stopping them from doing what they want to do.  One of the other things I guess that’s really important is that that’s so individualised.  So we all know what the formal definitions are.  You can look them up.  Every practitioner here has probably read Emerson or somebody talking about what a behavioural concern is, but at the end of the day it’s about that family and what impact it’s having in that moment.  

And a behaviour that’s a concern right now might not have been present but not have been a concern six months ago, and it might not be a concern in another six months from now.  But right now it’s having an impact on how they want to live their life, and so that makes it a concern.  In some ways it’s a really simple definition.  So I think one of the things we need to remember when we’re thinking about interventions and we’re thinking about behaviours of concern is the fact that it’s this fundamental principle that it’s creating a message, it’s just communication.  So anything that we’re doing has to still enable that message to come across.  I know we’re going to jump later to talking about tips and tricks, but I think one of the most common mistakes, for lack of a better way of talking about it, that we make is that we focus on the B in that ABCs, we focus on the behaviour and how we can make it stop, just make it stop.  

Actually as soon as you do that you take away a person’s voice and they can no longer get across their message.  And that message is important.  It was so important that they came at it with that crazy way of expressing it, and so all that’s going to happen is they’ll come up with another way.  And this is where we see that kind of cycle of escalation and things that can happen.  So I think it’s really important we hone in on that: it’s saying something and we’ve got to listen and figure that out.  And I think the other thing I wanted to hit on in relation to that was when Cat also talked about this term environments of concern or – I love that, I’ve never heard that, environments that elicit a behaviour of concern, because I think context is everything, and that’s a little bit of what I was getting at in terms of the timing and things, but it’s about the setting.  So a behaviour that’s maybe problematic in one space may actually be fairly adaptable in another.  

So take spitting for example: if I eat something and it’s off – if they hadn’t put the lid on the milk enough and I go and put it in my coffee, don’t think this hasn’t happened in my house, and I go, and spit it out, that’s an entirely adaptable behaviour, right?  You’d probably say, ‘Great job’, even if I have to clean up the mess afterwards.  If I was to do that in the middle of a classroom all over somebody’s work, totally different context and then it has an impact on people.  So understanding that context is really important, and when we’re talking about families, that’s your context.  So you have to know the family, you have to understand their system.  There will be no approach that works unless you understand all the different relationships that are coming into that dynamic.  

DR JADE MCEWAN: Oh my goodness.  Wow, that is a wonderful response.  Thank you for your carefully considered words.  You mentioned tips for practitioners, well, I’d like to ask you as someone who’s worked alongside families with a child with disability who communicates through behaviour or as you say people in general, what are your top tips for practitioners in this space?  

CAT LANCASTER: First and foremost leave your pride at the door.  No matter how much expertise you have, you talked about the decades I may or may not have in experience and it’s probably true for many in this room, none of that matters.  You’re coming into somebody else’s home, it’s their child, it’s their family system, they’re the expert.  One of the things I’ve learned, particularly from maybe my younger days, is if there’s even a whiff that you know better you’re done, or you’re going to spend weeks if not months repairing that relationship.  So my top tip is just to remember no matter how much you think you know, you’ve got to just go in there and listen because that’s how you understand the context, and the context is going to be key.  It’s going to guide everything, it’s going to help you understand the message.  It’s going to help you know whether they are ready for a more intensive intervention, or whether or not they need something really super simple at the start.  

And I also think that’s how you’re going to know what’s their priority.  Again this is when you think back to the definition we were talking about.  If we get too caught up in the formal definitions of what a behaviour of concern is it can focus our attention on things which may or may not be the family’s attention.  So we would be often guided as practitioners to think about behaviours which are hurtful to others or hurtful to self, and to think about those as being the most important.  But if that’s happening on say a weekly or monthly basis, it might be more intense, but it could be that every single time a direction to get ready for school happens that things are challenging, and that is every day, so then that becomes more of a concern because there’s a frequency about it.  So you’ve got to leave your judgments at the door, and just go in with that listening ear.  

The other thing that that also leads to, that builds that trusting relationship, it builds your credit in the bank so to say, because asking someone to change how they parent, which at the end of the day is what you’re going to be doing, is a really big deal.  Now I don’t know there’s any other parents in the room here, but it’d be really difficult to hear a message like – I think about this often for myself as a parent to have someone say, ‘Actually it’s the way that you’re responding in this circumstance’ or, ‘You are not meeting this need for your child and this is why they are expressing’ – that is really hard to hear.  So remember that and carry that weight.  It’s an important weight that we carry as a practitioner, and it’s an important weight that we and the parents will be carrying to make a decision that that child or young person should express themselves in a different way.  It’s hard for everybody. 

So if you’ve ever tried to change a behaviour yourself, and I’ve certainly told myself a couple of times maybe I shouldn’t have that extra glass of wine at the end of the day, or I don’t need chocolate every evening, I do really need chocolate every evening, that’s really hard, it’s really hard to do that.  So recognise that what you’re going into is going to be really hard work, and it’s good to acknowledge that upfront.  I often do when I’m talking to families I’ll say, ‘Listen, I get this is a big deal.  It’s a big deal for them, it’s a big deal for you’, and so then that also comes to my next tip, patience.  Pace yourself.  You’ve got to know this is a marathon and not a sprint.  You might get some quick wins, and they might all disappear the following week.  Don’t get frustrated, that’s the process.  It’s circular, it’s never linear.  So you’ve got to be ready to pace yourself along with that.  

Ebb and flow, sometimes families are ready, they come to you and they’re like, ‘Boom, let’s do this’, so you can go, you can really push.  Other times you’re going to go – and they’ve got a bazillion other things happening, and you just happen to have an appointment at that time and so they didn’t want to let it go because god knows it’s hard to find a behaviour support practitioner, there’s far more need than there is practitioners available, so they said yes even though last week their mother ended up in hospital and so and so’s just broken their arm and they’re trying to – all those things.  So just recognise there’s a dance that plays out in that.  I think those are my big ones.  I guess the other one I’d say is think about your easy wins early on.  Don’t tackle necessarily – I often say even if it is a big concerning don’t tackle the big, look for the simple things.  

It can be simple things like using timers, visual routines.  One small element of a day.  Let’s see if we can get teeth brushing working, let’s see if we can get someone to sit at the table for two minutes.  Because I think that sometimes just having a little success can give everybody a sense that you’re making some progress.  And lastly remember you’re working with kids, so as much as you can, make it fun.  The more things that can be a game, like I’m learning a new skill is a game.  Way better than just being told I have to do something different.  So make it fun, make it silly, never ask for 100%.  

DR JADE MCEWAN: Well, thank you, Cat.  Very few people I’ve known over the years have been able to make the complex so simple and accessible as you do.  You paint such vivid depictions of practices and considerations that we can all adopt to work alongside parents better.  I wanted to ask you very, very quickly, apologies, a pretty big question. So, it’ll be a bit of a test.  What can parents or caregivers do in the heat of the moment when their child might be experiencing heightened emotions and behaviours?  

CAT LANCASTER: So the main thing I guess to remember those moments is you have one simple end game: do least harm.  Least harm to the person, to yourself, to the environment.  There is actually no other goal in that moment, because when someone is heightened, when they’re in that lizard brain, it’s not a teaching moment, it’s not going to be the chance where you change – give them a new way to express that message or address their function in a different way.  All you’re looking to do is reduce harm.  So a lot of the times, rather than having some fancy response system, all you need to do is do something silly, do something – get in with them, connect with the child, co-regulate.  Whatever it is that works for them.  Give them a hug, give them a Coke, go for the walk.  Do something nice just to change the dynamic for each other.  Do something completely wacky or unexpected.  

I think one of my favourite stories which I’ve shared with you is I was working with a family who had four young children, all under the age of five and all on the spectrum, and it was one of those mornings when I arrived, and the world was clearly [happening] 00:32:04, so I just started helping one of the older children getting ready with various things.  We were all in the kitchen, she was with the baby at the time, and the toddlers found the fridge and they started decorating the floor with various items that they found in the fridge.  Now there’s a lot of ways you could respond to that.  You could yell, you could scream, you could snatch things out of their hands to stop the milk being poured on the floor.  What did she do? She jumped on the kitchen table and she started singing, ‘Let it Go’ from Frozen and it was awesome.  She was letting it go in the most genuine way, and all four kids stopped.  Everything stopped.  They were singing and they were watching, and that gave a moment to just shift the dynamic.  

So give parents permission to not have something fancy and formal, that doesn’t need to be something that is I guess focused on the function or that specific behaviour.  You just want to stop it and give yourself a chance to breathe, give them a chance to breathe, reset, and start again.  There was no loss.  

DR JADE MCEWAN: Well that story stays with me, and I think it’s a wonderful depiction of how to move things on in a way that, as you rightly say, is light and full of laughter and warmth, and just redirect behaviours in another way when we’re in our lizard brain, as you rightly say, but also I love that it positions the parent as the expert.  I think of all the things you’ve said that’s my favourite, that families, parents, children about themselves, they are the experts.  So thank you Cat.  Always a pleasure, and we will come back to you.  But now I turn my head to another esteemed colleague.  EMILY BATEY.  Thank you for coming Emily.  We’re delighted to have you.  Thank you for affording us the time because you are the busy mum of three gorgeous, spirited girls.  Her eldest, almost seven, is autistic with probable ADHD.  Her middle daughter who is four and a delight has possible signs of ADHD also.  

After completing a double major in psychology with forensic science and sociology Emily completed a Certificate V in mental health and an Honours degree in psychology.  Emily worked for four years in child protection and family violence units before leaving to have children.  Emily has since completed studies in birth, trauma, sexual abuse, child education, including completing her individual clinician trauma specialist certification.  Now Emily is a private counsellor and life coach primarily for women and parents.  Wow Emily, that is something.  I don’t know how you do it but you do it well.  So I would like to ask you a few questions if I may, the first of which being can you tell us about a time when a professional has nailed the supports provided to you and your children around behavioural communication?  

EMILY BATEY: Yeah absolutely, and I’m so happy to be here.  This is such an amazing space to be in, and hearing the two Cats, is that okay to say, talking before me has been really wonderful because it really highlights a lot of the things I would've wanted to say anyway.  So we’ve had a few, quite a few behavioural support workers come through, and the ones that we have really connected with and that we’ve seen have made a really big difference to our – well my eldest daughter but our family are the ones who have really come in with an energy of we’re a team, and we are here as a team to find those ways to best support this beautiful child as well as the family.  So I kind of have these images of us all sitting around with our own puzzle pieces and putting them together.  So there’s no puzzle piece that’s more important than another piece.  You need them all.  

When we’ve had practitioners come in who perhaps haven’t had that view, they have come in as the hero coming to save the day, we’ve never been able to really connect.  There’s never been that deep connection that we’ve had with other workers, and so they haven’t been probably quite as effective.  But those ones that we have loved have taken the time to get to know the family, and I think this came up in the research was individual families.  It works best if the information is delivered one-on-one to families, because I think as CAT LANCASTER was saying each family is so unique.  I’ve got three girls, that’s going to be very different from a family that has two boys.  The ages are different, the culture, the heritage, everything is really different.  So if you’re trying to cookie cutter specific supports without understanding the family dynamics, that won’t work.  

So those ones that come in and go, ‘Hey, you’ve got three girls, tell me about their relationship.  Tell me about how they respond to each other, how does that work?’, those bits of information are so important, and they’re the ones we really got to know.  And I suppose very quickly I’d kind of – neuro affirming but actually being.  So actually seeing my daughter’s quirks and super excited and big movements and artistic amazingness as exactly that, as just lots of beautiful, rich incredibleness that she is rather than seeing problems, rather than going, ‘Wow, that excitement’s huge, we might need to try to -’, ‘No, it’s beautiful, let it go.’  So that kind of strength-based and making a point of getting to know who she really is, beautiful, beautiful stuff.  

DR JADE MCEWAN: I love that you just said let it go, it fits so nicely with what Cat said.  What a wonderful message.  I love your analogy about puzzle pieces and no one person be more important than anybody else.  Just very vivid, thank you for that.  I’ll move onto another question if I may.  We all know that words can be very impactful.  How do you prefer professionals talk to you and your children about behavioural communication?

EMILY BATEY: I think the professionals who come in with that really technical language sometimes accidentally put up barriers.  So really that professional coming in with the DSM and the really – immediately you tense up like, ‘Okay, here we go’, and it puts some barriers between the professional and the families.  The ones that come in, they’re not sugar-coating anything because these families and ourselves are living it, we don’t need it sugar-coated.  Just really straightforward, empathetic connection with their language is what’s best.  And I think we’ve found each family has their own language that they might use for certain things like – I was trying to think of one, but I know sometimes when my daughter is quite manic, she herself will go, ‘I’m feeling as mad as a hatter!’ You have your own little languages, and I think if professionals can hear those and bring those in as well, it can be quite rapport building.

Particularly with the young person as well, if they can hear their own language being reflected by someone who’s new in the family, it can be a good connection.  So not overly technical, not sugar-coated, just straightforward, honest, people talking to people.  

DR JADE MCEWAN: Again what lovely clear information from personal experience that we can all adopt, accessible, plain language, and empathy, and genuine, a genuine approach.  Thank you for that.  I do have one more question, and that is what are your top tips for professionals as a parent?  

EMILY BATEY: I think I’ve probably said a couple of these but I’m going to say them again, is getting to know the family, the whole family.  So again professionals who have really made a difference have gotten to know my middle daughter as well because she is a huge piece of the puzzle of how our family works.  So getting to know her has been huge.  I think just remembering, and again that rapport building and that connection is that if my daughter’s in the room, talking as though my daughter’s in the room.  Having those big conversations with the family, my daughter’s listening to everything, and so if you need to talk about the hardest points that we have in the family, sometimes it’s actually best done via email beforehand because if you as a professional come into a family’s home and sit in front of the young person and say to the family, ‘Tell us all her worst moments’, that can actually be quite shame-inducing for the kid to sit there and have their parents say all these things.  I’m getting teary, I’m sorry.  

So I think just remembering those things.  That this is an ecosystem.  The child’s not in a bubble floating through the world trying to avoid sharp edges.  We’re all in it together, and so making sure that as you come in as a professional that you’re really coming in with that open mind and connection-based focus for the family.  

DR JADE MCEWAN: We cannot thank you enough Emily because whilst we all come to the table with meaningful experience as practitioners and researchers, and yes I too am a mum of a child on the spectrum, I think there is something really unique about you coming here today and sharing your personal experiences, you’re really giving of yourself, and we value that, and we greatly appreciate it.  Some fantastic points there that I think we all can walk away richer for, so thank you very much.  

EMILY BATEY: Thank you Jade.  

DR JADE MCEWAN: So I now move onto the last part of our webinar, it’s gone far too quickly, and that’s a little bit of a question and answer session.  I’d like to direct some questions to Emily and Cat, and it’s about education.  Education plays a huge role in our children’s lives.  Are there any considerations in education or school settings that professionals should be aware of when supporting children with disability who communicate through behaviour?  

CAT LANCASTER: There’s lots of things I guess for us to be aware of when we’re moving in an education system, many of which we’ve actually hit on.  So though you are working with a child, in the context of addressing behaviour you’re working actually within the family system.  So I think it’s really important to make sure it is an open conversation and open dialogue with the parents.  Talk to them about what’s working at home.  Talk to them about what they want to be working on at home.  There’s probably tips and tricks you can be sharing both ways, and actually the most effective way you’re going to help a young person learn to express themselves in a new way, which is what you’re doing, is if you’re both working to the same goals.  So, trying to think about what’s going to make a difference in both environments, so there could be some collaboration there, so there could be some consistency for the young person.  

Because one of the challenges might be that they’re trying to learn two very different things, and lord forbid potentially conceptual things in two different environments, and that can be really challenging for them.  And I guess the other thing that I would just say, and this is – I’m putting on my previous teacher hat because I was a teacher in a past life, we’ve got to constantly remind ourself why the kid’s there and what they’re – I know we’ve got a bazillion things we’re carrying, so many different things, but in each moment what is our learning objective?  If our learning objective is around a skills in say the reading, writing, arithmetic space then the behaviour’s a side note.  It doesn’t actually matter how they go about doing that learning.  So put that aside.  If they complete the task while in a tent or sitting under the desk or on a bouncy ball or while walking around the room, it actually doesn’t matter if they’re completing the task.  And that can be hard.  

So again it’s a let it go thing because we have a view of what a classroom should look like.  I wish I’d taken more photos of what my classroom looked like because in many ways it was not remotely what people would expect a classroom to look like because the end game was not about how they learned but just that they learned.  I totally recognise if you’ve got a class of 30 kids that’s a totally different dynamic, it’s hard, it’s really hard, but it is important in each moment to stop and ask ourselves, ‘What’s my objective here?’, and if the objective’s not about the behaviour then go with that whole, ‘How can I just defuse this situation?  It’s not a teaching moment, that’s not my goal.’   I guess the other thing I would say is remember that everything that we do for a child who’s neurodivergent or has an intellectual disability, it’ll help all the kids.  The reality is no kid doesn’t benefit from a routine.  No person doesn’t benefit from a visual schedule or a visual routine.  We all use them.  Why do you think those phones are stuck to your hand?  

We all use visuals all the time.  So when people come in and talk about these systems don’t get caught up in, ‘Oh I have to do this for this child’, it’s going to help the whole class.  And that’s been my experience also in working with adults with disabilities, that when I do things for one individual the impact is usually positive for everybody whether it’s in a group home environment or a large day service et cetera.  So just be conscious about that.  Also remember that our neurodivergent children, they’re not learning through osmosis the way that maybe some other kids do. So when you talk about being good, that’s so abstract, they have no idea.  So just remember that those things require explicit teaching, and that’ll take more time.  But if you actually want to get the change you have to do explicit teaching of those skills.  They’re not just going to see their friend next door sitting quietly at the desk and that’s what’s expected of them to do.  

DR JADE MCEWAN: Thank you Cat. Again, I love your person-centred individualistic approach, and I think there’s a lot of lessons there for us in all manner of environments, even the workplace for our neurodivergent colleagues.  Emily, do you have anything to add on that question about what can be helpful for supporting our children in education type settings?  

EMILY BATEY: Yeah, and I think this is a huge one.  We could do a whole webinar on this I’m sure.  I think this is a really challenging space.  I think about the things that my daughter does to regulate her nervous system so that she’s in the right place to learn, to really get involved and do that deep thinking., and a lot of it doesn’t fit well in a classroom situation.  My daughter clicks her fingers when she’s thinking, my daughter hums, she spins, she does all this really great stuff, and at home, beautiful.  We’re the jump on the bed kind of family.  If you’ve got that big energy that you need to move through your body so you can really dive into this skill do it, go for it, and she’ll come back and she’ll be like, ‘Right, I’m ready to go.  Let’s dive into this.’  Can’t jump on desks at school.  So it’s about being able to have those discussions with your young person about where those skills are appropriate and what we can replace them with in a classroom setting.  

Cat, oh my gosh, I wish you were my teacher, because I think there’s a lot of teachers out there who are doing such a fantastic job that when you’ve got 20 kids and three of them want to jump on the desks – or even just the clicking, because if we’re thinking of exam type areas, my daughter’s trying to think, and she’s clicking and humming, that’s not appropriate, you’re distracting the other kids.  So being able to put something else in place I think is really important.  But like I said, I could talk on this for a very long time.  Big communication with the young person about what’s expected of them, I think as you were saying, Cat, that explicit, ‘When you’re feeling this, this is a great thing we can go to.’  

CAT LANCASTER: And wouldn’t you love to see teachers getting more opportunity to get some professional development around those sensory processing and things like that?  I know we talk about it in small ways, but it can transform the way you understand how a kid learns, and actually should transform how you set up classrooms.  We put kids with a really high noise sensitivity in the same classroom as the kid who regulates through sound, and that’s an impossible thing for the teacher because they have to make a choice over which child doesn’t get to learn.  Every teacher’s there to help children learn, so you’re asking them to go against everything that’s innate in them in that moment.  

DR JADE MCEWAN: Thank you again Cat and Emily.  Wonderful insights, and again very practical because I think the more practical we are, the more plain language we are, the more genuine we are about this the more we can all see these issues through a similar lens, and ultimately yield better outcomes for people with disability generally.  I’d like to ask just quickly as we have little time left unfortunately, Cat Strawa and Cat Lancaster a question which is diagnosis is often an inroad for families and children to get support, however for many this process does not happen overnight. What would you say is important for practitioners to know when working with children and families without diagnosis?  

CAT STRAWA: So I can only I guess speak to the research, so I’ll just touch on how that was included and what we found, and then I might throw to you Cat if that’s okay.  So like you said we know formal diagnosis can be a complex, long process, and an emotional and draining process for families.  But in terms of the research, some of it was very specific for children who had specific diagnoses like Fragile X syndrome or autism.  So depending on what you want to support children and families with, for some of the interventions it may be important to check which population groups they’ve been found to work for.  But a number of studies were with mixed disability groups, so children may have had intellectual disability, autism or other developmental delays, or communication difficulties.  

So in the research that we were doing the strategies and principles that we touched on today and that Cat and Emily have spoken about, they’ve been studied across a range of mixed disability groups, so children with different diagnoses or children who are undergoing diagnosis but may experience those communication difficulties can benefit from what they’ve spoken about today.  

DR JADE MCEWAN: Thank you Cat. Cat Lancaster, do you have anything further to add?  

CAT LANCASTER: Yeah, the first thing I would say is that everybody uses behaviour to communicate.  That includes all however many of us that are on the line right now.  It has nothing to do with the fact that we do or do not have a disability, or do or not have a mental health condition, it just has to do with the fact that we’re human.  So if we always start from a premise that we are dealing with a human who is their own little person and expresses themselves in their own little way then we’re going to be on the right track.  There’s no question that knowing diagnosis and understanding how some of those diagnoses may manifest in an individual can help us understand what potential functions might be.  If you have a diagnosis there’s certain things that you might don’t do.  I know that if I’m working with somebody who is neurodivergent there’s a greater likelihood that they’ll have more extremes in their sensory processing than the typical population.  That’s all I know.  

I don’t know what those extremes will be, or how they manifest for them, and how that may be impacting in that particular environment.  So it gives me a starting point, but I get the same starting point when I just watch that child dynamic within the family.  So I guess what I’d say is it’s useful, but it’s certainly not the be all and end all because it’s – if you meet a child on the spectrum you’ve met a child on the spectrum who is so different than their brother or sister who might also be on the spectrum.  It’s just one small part of who they are as a human.  

DR JADE MCEWAN: Well once again, very clear and wonderful advice from all three panellists.  I’m absolutely delighted.  I’m keeping track of time to see whether or not I can squeeze another question in while I’ve got you here.  Let’s see.  Look, very broadly, and I guess we’ve got about two minutes, if I can just turn my head quickly to perhaps Emily and Cat Lancaster, strategies for our neurodiverse children, you’ve touched upon this very briefly Cat, but are there any specific considerations practitioner or Emily that should be considered when supporting families or children specifically o the spectrum?  

CAT LANCASTER: I guess there are a few assumptions you could make from a practitioners game point, and Emily can talk about how that plays out for her kids. But we know that for most individuals who are neurodivergent that there are elements of their frontal lobe that are impacted.  So there’s more difficulties with things like planning and initiating activities and sequencing steps.  So knowing that, putting in strategies that help with those parts of the way one approaches a day will always be useful.  So that’s why routines are so important.  You going visual sometimes can be so important because you need something that’s more concrete because it’s just not your default, not your happy place.  I think one of the other things I often say to families is to remember in those moments that what we’re trying to do is put a support so they don’t need to take as much energy to be able to do that task, because the more energy they use to do each task the less they have at the end of the day. 

We all start the day with this pool of energy and resource.  So if I’m going to withdraw from the bank because I don’t want them to use a routine, or I don’t want them to use a checklist, or I don’t want – that’s fine, they may be able to learn to do that, but they will take more energy because that’s not how their brain is wired.  And so then there will be less at the end of the day, and we may well deal with the consequence of our previous decision.  Similarly you know that anxiety is likely to be present, so think about what you can be putting in place to manage and to help them manage that. As I said you know that sensory processing is likely to be a factor, so you can then think about how does that manifest for that person, where do they have their higher and lower controls?  

DR JADE MCEWAN: Marvellous advice.  I would love to ask each and every one of you more questions, and as said at the beginning of this webinar, this is a rich and meaningful space, and we’d love to – and I think there’s scope to talk about these topics for weeks probably, but today we’ve touched the sides, and I think we’ve done a jolly good job of that thanks to our three panel members.  We’re very grateful for your time, but unfortunately it is all the time that we have for today.  It’s clear to say that our discourse is of significant importance, so I think thanking our panellists for their time, our audience for your interest and for coming today, and AIFS Communication, that’s Australian Institute of Family Studies, Communications and Child and Family Evidence and Evaluation Team for bringing this webinar into fruition, we’re very grateful.  

This webinar, as I said earlier, is recorded.  Please subscribe, should you choose to, to the AIFS newsletter to be notified about where it can be accessed.  And there’s a raft of rich and meaningful issues within those newsletters every time they come out, so I would recommend that you subscribe to them.  We also, should you have the time, would be grateful if you could complete a short feedback survey, and we sincerely value your time and thank you for joining us with this webinar, and until next time thank you very much, and all the very best.  

[Pause]

DR JADE MCEWAN: Welcome to the extended question and answer session from our live webinar earlier today.  Thank you for coming.  We have some interesting follow-up questions to our panel members, thank you once again for sticking around and asking further questions, the first of which is, which I will direct to Cat Lancaster, and Emily, be really interested to hear your perspective, can you tell us in your experience a little bit about how one tells the difference between children communicating through behaviour that may benefit from behaviour support and other behaviours which might be a sign of something else like emotional distress?  

CAT LANCASTER: I think the first thing for us to remember is that behaviour is behaviour is behaviour, and the core thing is what’s it saying in that moment?  So you need to always be thinking about the whole child and the context that we’ve been talking about, and sometimes that could include another diagnosis or it might include a particular experience that they’ve had in the past or in the moment, but that our intention has got to be to understand just what is that message at that time.  I think the other thing I’d say, and this is a random segue, is to remember that the same person can use the same behaviour to communicate a whole bunch of different messages.  So just because somebody – when someone describes what someone does, that tells us actually very little.  Knowing how a person jumps on a bed for example, as Emily was describing, actually only tells us about an action.  

We need to understand is it because they’re excited, is it because they’re overwhelmed, is it because something just happened and they can’t figure out how to respond to it or process it so they’re just getting it out of their bodies?  Because all three of those things may look exactly the same but require a completely different response.  So thinking about those sorts of things.  And I guess in relation to whether a behaviour is of a concern or an annoyance or coming from other things, again it’s about the family.  I think there was an example about pulling things out of a cupboard that somebody put in the questions, and I think what we need to remember is we don’t know how that family feels about the things that are in the cupboard.  We don’t know what’s attached to those things, we don’t know what’s attached to that moment, we don’t know about the frequency of that thing.  

Remember, frequency can be the thing that drives, like, ‘It happens every day all the time, and that’s why I know. Now a behaviour of annoyance is seriously a concern because I’m going to lose my mind, right?  So leave the judgment, watch your values.  Things that you think are important, your unconscious biases that come in as a practitioner, the weight that you place on certain behaviours, certain ways of being, certain ways of doing things, certain ways families respond.  We can judge the way a family – ‘That’s so inappropriate’, it’s the best thing they knew how to do in that moment.  There’s no parent that wakes up in the morning and doesn’t think anything other than they’re going to do the best they can.  Doe that answer the question?  

DR JADE MCEWAN: Marvellously, marvellously.   Emily, do you have anything to add from your experience?  

EMILY BATEY: I think Cat’s nailed it.  I think it’s context, knowing that child, knowing if there’s been a change in behaviour.  If every day they’re jumping on the bed but today they’re jumping on the bed and punching their hand into the wall, there’s a change in behaviour, and that only comes from knowledge of the family, knowledge of the child and knowledge of the context.  Big feelings sometimes take time to come up, so sometimes we may have – our cat had to be put down and I had all three kids with me because my husband was in Sydney and so they had to watch our darling cat be put down.  My middle child didn’t have a really big response to that until about two months later.  If you came into that family, or into my family as it were, at that time you’d be saying, ‘This behaviour’s really odd, really strange, it might be a – maybe it is ADHD’ or trying to fit it into a diagnosis.  

It was only context and understanding that there was something else, that it was actually an emotional response to a trauma from months before.  So I think context and knowing the family.  

DR JADE MCEWAN: Thank you for sharing that.  Again we deeply appreciate your lived experience.  I’m curious, you mentioned the word trauma, should professionals take a trauma informed approach to the support they provide families, and what does that even look like?  I’ll throw that open to any one of the panel members.  

CAT LANCASTER: I think the first thing I would say is that if you’re going to be working in the disability sector you should have an understanding of trauma, because there is no individual with a disability that hasn’t experienced trauma at some stage because they will be othered whether that is an individual with a vision impairment who has their stick taken off them because it’s metal and they have to get through a metal detector, or they are a person who can’t get on the bus because they’re in a wheelchair and not all of our platforms across Australia are – everyone’s had that experience.  And for children with a disability they’ve often had significant experiences of exclusion at school and from their peers, and that is traumatic.  So it has to be in your toolkit.  You’ve got to understand how those moments change a person’s understanding of themselves, change their understanding of safety.  

And of course they may have had what we would consider I guess more traumatic events across their lives in terms of experiencing violence, neglect or abuse.  But all those moments change a person, and so you have to understand that.  The caveat I would say, because it’s a risk I see, particularly for practitioners who work perhaps in the child protection space, is don’t forget they’re still a child, they’re a whole child, and that traumatic experience, it may have shaped elements of who they are, is not all of who they are.  And the same way we talked about earlier, don’t get caught up on the diagnosis.  You must understand what it means for them.  Just like Emily just described with the cat, people respond to trauma in really different ways, so you’ve got to understand them and their context.  

DR JADE MCEWAN: I appreciate that greatly, thank you Cat. Again valuable lessons that we can all put in our toolbelt for future use.  Emily, I wanted to direct a question to you which is about including siblings in the discourse around meeting a child or family member’s needs.  What have you found to be effective in – or considerations for including siblings in this context?  

EMILY BATEY: Yeah, it’s such an important thing that I think professionals need to be mindful of, particularly when you’ve got younger kids, their sibling relationships are huge.  They wake up next to this person sometimes, my girls like to sleep together, they play all morning together, they have their excitements together, they have their traumas together sometimes.  This relationship is huge and it can have an enormous impact on all the siblings, not just the one who may have a disability.  So being able to have a good understanding of the siblings in the home, how they respond to each other.  I know my older two, my almost seven and four year old fight like cats and dogs, and they can really have an effect on each other’s self-esteem really quickly.  

If my eldest is starting to have some anxiety and my middle child misses it because she’s four and she says something like, ‘Why are you doing that, that’s weird?’, that can ruin my daughter’s day.  Now if a professional comes in after that, and not taking into consideration sibling relationships, they’re missing a huge chunk of my daughter’s self of self, sense of world, sense of family.  And also for my middle daughter too, understanding that siblings of someone with a disability often have their own traumas, and that’s a cycle in itself.  That’s another great very big question I think –  

CAT LANCASTER: Yeah, that’s another webinar.  

EMILY BATEY: Yeah, absolutely.  

DR JADE MCEWAN: I would love that.  And Cat Lancaster and indeed Strawa, if you have anything more to add in this context about siblings and I guess how to support families through sibling relationships I would love to hear it.  

CAT LANCASTER: Just remember the message that even if you are supposedly working with a child, and I’m thinking particularly perhaps practitioners who maybe are getting funded through the NDIS so they have a package for a particular person and they think, ‘I’m there to work with that particular person’, don’t narrow your view.  You have to look at everybody who’s in that family, including the dog, or the cat as the case may be for Emily.  So I think that you have to be able to look at the nature of all those dynamics and how they’ve changed over time.  Sometimes the best way to change a behaviour actually is to help parents go out for dinner a bit more often.  It’s actually just – don’t think that you’re necessarily going to be having to go in and do intensive therapy with that child.  You may or may not.  It may actually be much more about the system around them that you’re needing to look at.  

DR JADE MCEWAN: Indeed, wise words.  I think there’s a lot to be said for that holistic approach.  I really value your insights in that space.  You’ve both shared wonderful examples of experience, and my colleague Cat at the Australian Institute of Family Studies, your research and the organisation of this webinar, thank you for making it front and centre with your efforts, because I feel we’ve all benefited today.  Unfortunately however, that is all the time we have for today.  It’s been an absolute pleasure sharing this and working alongside colleagues with such wonderful, unique insights, perspectives and evidence.  Thank you for your time, and I hope that you’ll join us for future webinars.  All the best.  Thank you.