INTRO
hello hello welcome everybody to the autism 360 method a weekly podcast where we talk about everything autism 360. uh every week we’re going to be catching you up with what’s going on in the program chatting with team members and talking all things mindset as well as exploring uh relevant ideas uh to do with autism parenting uh so most weeks i’m lucky enough to be joined by my wonderful co-host renee however renee is not with me today so i’m going to be flying solo we are we wish uh renee all the best and we’ll see her very soon but i’m ella bailey i’m an autism 360 veteran coach and explorer of all things parenting support so welcome to you our lovely listeners it’s so uh great to have you here on the autism 360 method uh and before i started i really want to extend a an invitation for you to get in touch with us to chat with us uh to send your feedback to ask questions and the best way for you to do that is to drop us a line at hello autism360.com we love your feedback this podcast is for you and we want to be able to answer your questions so please do drop us a line so before we get into the nitty-gritty of today i wanted to uh acknowledge the gadigal people of the eora nation on whose land i live and work and from where this podcast is being broadcast today and i also wanted to mention that this podcast is not a substitute for medical or allied health intervention if you’re worried about your kiddo and you’d like support please do reach out to your medical professional or your allied health professional reach out to autism 360. we’d love to support you on your journey
TOPIC OF TODAY
so today what we are going to be talking about is a bit of a hot topic at the moment in autism parenting and that is demand avoidance and the spectrum so uh there’s a lot of buzz going on right now um in the autism community in the autism parenting community about demand avoidance about pda or pathological demand avoidance uh sometimes it’s called eda and just about what that looks like what it is and why these kiddos need some uh a little bit of tweaking to the way we would typically engage with ketos on the spectrum um it’s important to recognize when we’re talking about um demand avoidance demand anxiety or pda i’m going to be using those terms interchangeably in this podcast um that what we’re talking about here is not actually an official or recognized diagnosis as per the dsm-5 um and uh it’s actually uh not recognized anywhere uh as an official diagnosis however where it is recognized is uh uh in the uk where they use a different diagnostic manual they recognize it as a pretty uh stable cluster of symptoms that’s recognizable as something that um impacts some kids on the spectrum and not others there does seem to be a significant overlap between kiddos who struggle with this cluster of symptoms um and are on the spectrum um there are sort of um unofficial diagnostic tools that you can use um and that have been created and there’s research going on around the idea of of pda or demand avoidance but i just want to flag that i’m not referring to this as an official um or clinical diagnosis but more is something that’s been anecdotally um anecdotally derived um and something that um certainly people uh you know adult autistics um talk about as something that’s relevant to their experience and also something that autism parents talk about as something that they experience with their kids um and so uh i wanted to just chat about it because um often it’s it’s something that uh we come across here on the program because um often for a kiddo who is struggling with demand avoidance one of the most common things that we hear from parents is that you know a typical intervention approach a traditional intervention approach just does not work for my child it doesn’t matter how many different um ots speech therapists behavior therapists we try uh their quality of life just doesn’t seem to improve and obviously that’s what we’re all aiming for right an improvement for our kiddos quality of life and improvement for the quality of life of our family and so often what we see for kids who.
FLAG AND DEMAND AVOIDANCE
are struggling with um demand avoidance is um uh a few little uh flags that parents might say so things like oh um my kiddo just does amazingly at school they have you know put on quite perfect behavior their their teachers love them they’re a dream but then when they come home they have a massive meltdown a whirlwind of chaos that kind of thing or um they might have um a meltdown or be unable to cope when a parent part of me directly asks them to do something um that a parent might know that they can physically do but that child is unwilling or unable to complete that task so it might be you know that your child can you know has the physical capabilities to get themselves dressed in the morning but they are just totally point blank unwilling or unable to do so when you ask them to do it um another like typical uh uh flag that i see for this sort of thing is um kiddos really are struggling with a whole bunch of what uh what is termed sensory defensiveness so that’s um uh aversive sensory stimuli that’s activated through uh elevated anxiety levels so for example your kiddo might be okay putting on socks and shoes to go out to the park on the weekends but that same child come monday morning is unable to tolerate the feeling of their socks and shoes to go to school so that is what we would call sensory defensiveness based on elevated anxiety levels so that’s another common one that we see for our kiddos who are struggling with that demand avoidance so what i would say is that um demand avoidance in in ketos on the spectrum pda can be really um confusing and unsettling and and heartbreaking for parents specifically because you know you’ve had this diagnosis you’ve had your um you know your autism moment you’ve recognized your kiddo is struggling with something you go to um all this all this hard work of getting them into therapy of of um getting them into an early intervention setting and then it almost makes things worse you know they’re they’re in therapy they’re distressed they’re not coping they can’t they’re not able to make progress in the way that we are expecting and that is so difficult for families who just want to improve um their child’s quality of life so often something that we see with um kiddos who have demand avoidance is that um really underlying uh body of anxiety that’s driving a whole bunch of control-based uh behaviors as a strategy to manage that anxiety that they don’t feel like they’re coping with so a a really common way that this manifests is in not being able to tolerate or not being able to um follow through with when a direct demand is being placed upon them so a demand is um really anything that is asking our kiddo to do something intentionally so that could be you know putting their socks and shoes on but that could be something like eat go to the toilet um go to school any of those things um and it’s you know it’s different for every child but any of those things could be um interpreted as a demand by your child um and you know by their interpretation they need to be pushed back on as a way of managing their anxiety um and so i think it’s confusing for parents because they know that in a in other situations their kiddo can cope with those kinds of things you know my kiddo can feed themselves my kiddo can go to the toilet but in these really day-to-day situations where i’m needing to ask them to do those things in a certain time frame or under certain conditions they’re unable to cope with it or it causes a massive meltdown or you know whatever it might be um and obviously that’s super frustrating for parents knowing that your kiddo is perfectly physically capable of dressing themselves to go to school but is unable or unwilling um you know to do so in the morning when everybody’s trying to get ready it’s chaos already and then your kido’s not um you know not getting dressed when you know that they physically can that’s a really difficult thing um to cope with.
TIPS TO CONSIDER (TIP #1)
in the morning getting ready for school so um the main thing that i wanted to flag and sort of my top three tips that i wanted to um to flag as a place that you might start if you’re if you feel like this is ringing bells for you or ringing bells for your child these are the um the ways that you might start helping uh to see if it makes a difference for your child so the main thing that makes a massive difference for kudos who are struggling with demand anxiety or pda is to use what’s called the panda method of communication so there’s a really great organization in the uk called the pda society and they have developed a lot of research backed strategies to help with kudos who are struggling with demand anxiety and so this one is specifically about um changing the way that we verbally communicate and and non-verbally and i’m using verbally here in the inclusive way it could be aac it could be visuals or it could be spoken word changing the way that we communicate with our child and the way that we quote unquote place demands so the first one is p for pick your battles we know that um kiddos on this spectrum who do struggle with demand anxiety need to have choice and control in their lives to be able to manage that anxiety and uh be able to get through their day so my um a big one is to pick your battles decide what’s really important that you do need to um that you do need to uh you know really push your child to do and what you can let go of so for example um in the morning is it more important for uh that you that your child sits at the table to eat breakfast or can we pick our battle and choose to let go of that and let them eat breakfast you know on the floor in front of the tv or in the car as a way of reducing the demands so that your keto can push through the things that are difficult for them um whilst not worrying about the things that aren’t super important enable some choice and control um for your kiddo so you know a kid on the spectrum with demand anxiety or demand avoidance is really just looking for ways that they can manage um the underlying anxiety through control over whatever it is that they can get their hands on so if we give them a little bit of choice and control more so than they would have before we’re going to see that anxiety come down that anxiety that means that they’re pushing back on day-to-day things we’re going to see that anxiety come down let them choose um what they’re wearing let them choose how they want to get dressed let them choose what they’re eating and you’ll see a whole lot less pushback and i think just accepting that some things can’t be done and letting yourself and your child off the hook a little bit giving yourself and your child a little bit of grace and letting it be you know picking our battles is an important one.
TIP #2
the second one is anxiety management in our language so what we want to do is we want to reduce uncertainties for our kiddos with demand anxieties reduce uncertainties in our language be really clear about what we’re setting out in terms of expectations and timelines um and uh you know giving them really nice uh kind of outline boundary statements um in terms of uh explaining what they’re going to do so for example your child might be anxious about not knowing uh what teacher or students are going to be in their class today um and so you might be able to reduce the uncertainty in that situation by saying something like when you get to school there will be somebody there to teach you and look after you you know full stop um so that kind of statement it reduces uncertainty it doesn’t place demand um but it helps your kiddo to have something that they can hang on to and reduce uncertainty in that situation that might be driving the anxiety that’s really um pushing them to hang on to control um another one is uh thinking ahead so that’s always going to help us in terms of reducing the likelihood of meltdowns and panic attacks and those sorts of things thinking ahead what sort of environment is my child going into how can i um help them to be most safe in that environment in terms of their sensory challenges in terms of their anxiety and in terms of their um demand control anxiety um so that’s the kind of the the second.
TIP #3
the second point on the uh the panda strategy the third point is negotiation and collaboration i think what really uh uh what really makes a difference for kiddos um who do have that uh demand anxious uh profile of the autism spectrum is feeling like they can collaborate with adults they trust to make decisions in their lives and it’s so important that as parents we keep calm in that situation where your kiddo is really struggling to let go of control they’ve got these anxiety driven behaviors we must and i cannot stress this enough stay calm if you feel like you’re gonna you know flip your lid you feel like you can’t maintain control of your emotions in that moment tag out with a parenting um partner with somebody you know another responsible adult in that situation until you can go away calm yourself and come back because uh all that you flipping your lid is gonna do is uh is drive a bigger wedge it’s gonna create more problems um and that’s not gonna be helpful for anybody so stay calm proactively collaborate and negotiate so that your kiddo feels like they have some say in what’s going on they feel like they have some agency that’s going to make a huge difference in how much they’re able to cope with during the day and fairness and trust are i cannot stress enough crucial to helping a child with demand anxiety or a pda profile of autism to cope with demands fairness and trust and open communication so i think that those things are almost like the bedrock you know even more so than um a neurotypical child or even a typical profile of a kid on the spectrum um a really clearly defined um relationship based on fairness and trust um and a safe person that that kiddo can go to to explain why they feel anxious or why they’re feeling this driving need to take control in a situation is going to be the best bedrock on which you can help your child to be able to accept the demands that are part of day-to-day life uh the next uh you know thing that we can do is to disguise and manage demand so the way that we’re placing demands verbally um and this makes such a difference for kids on the spectrum but it does take some practice as parents and carers of kids on the spectrum and kids with demand avoidance changing our language and the way that we that we ask children to do things i cannot tell you how much of a difference this makes so word and position requests um indirectly we need to be um instead of saying something like um you know please take your dishes to the sink um saying something like um it would be great if those dishes could go in the sink so you’re not saying you have to do it you’re not saying you have to do it now what you’re saying is what you would like for the situation to happen and your child is going to understand um to some extent that you are you know what you want out of the situation but without directly placing the demand that causes that um demand anxiety and control behaviors uh to pop up for your child so we need to be constantly uh monitoring our kiddos um agitation level their tolerance level and their heightenedness um throughout the day and and match the level of demand the man the level of directness of your language to how heightened they are if you can tell okay my child is really chill right now they’ve just had i don’t know some time on the swing or they’ve just had some time in the bath they’re feeling really regulated that’s the time when they’re going to be able to cope with the most directness of demands from you so if you really have something that’s going to be tricky for them to do but you know that it needs to get done then that’s going to be the time that you are going to have most success with placing that direct demand on them so pick you pick your uh pick your windows wisely folks um and doing things together i would say um again it’s about that fairness and trust um that’s so essential for a child to be able to let go of some of that control that they’re holding on so tightly and doing things together helps so rather than kind of directing your child to sit down and do their homework by themselves you might sit down and say okay um would you prefer me to do some of my homework or would you prefer to me for me to help you with your homework while we sit at the table and again there you’re doing a little bit of proactive collaboration but you’re also doing things together and building that fairness and trust giving them some choices um and all those things are going to improve um your child’s capacity to cope.
FINAL TIP
with that demand that you’re placing on them which is that they do their homework um so the last uh strategy given by the pda society um is adaptation something that really helps for kiddos with that demand avoidant profile um is something like humor distraction novelty role playing um and flexibility in the way that we placed a man so something like uh you might engage in a little bit of um what’s the word pretend play with your child so you might you know your child could pretend to be the teacher teaching you how to um write the the letters and you could be you could pretend to be the student are you still getting the homework done are they still writing the letters yes they are are they having such a um you know an anxious experience that they’re not able to do it no they’re not um something like uh yeah using humor be silly play around see if that helps for your child to feel relaxed enough to then cope with that demand further um it’s going to make such a real difference um to how your kiddo can uh cope with those day-to-day demands things like um you know silly sock puppets that give um that place a request or um yeah something uh something that’s distracting so you are you are asking them to eat their dinner but at the same time you’re playing a i don’t know a funny card game or something like that um can make a real difference to your child’s regulation level which is what drives that controlling um demand avoid an anxious behavior okay so they’re the end of my uh my strategies for the that uh pda profile but i did have a really interesting.
QUESTION FROM OUR COMMUNITY
question from uh one of the parents who sent in a mia from camden asks my child can’t tolerate wearing his school socks and shoes every morning it’s a battle what is it about and what can i do to help him oh amir yes thank you for sending this in um uh it’s it’s a really uh common thing that we see for um akito who’s struggling with um sensory defensiveness often a flag for um pda profile kiddos um and something that uh you know it’s it’s uh can be really helpful to try is some kind of regulating sensory input directly before you’re trying to put your kiddos socks and shoes on so something that i’ve talked to a lot of clients on the autism 360 program about is using um the will burger brushing protocol directly before trying to put socks and shoes on and this has been transformative for some families whose kids just absolutely could not tolerate school socks and shoes doing that protocol the the dry brushing protocol the thera pressure brushing has just made a world of difference to their kiddos um pardon me sensory experience um that they’re uh that they’re having in that moment and meaning that they’re then able to um tolerate school socks and shoes another um uh uh strategy that i have um heard has been very successful for a number of families is um really modifying the type of sock that you wear so i know that lots of schools have specific socks that you need to wear but um i would say it’s probably better for your kiddo to get to school in any socks and shoes than to not be able to get there um and so there’s a particular brand called sister sensory and their um seamless socks are an excellent option for kiddos who can’t cope with um the sensory input of typical socks um and uh so when your kiddo is saying things like they want their socks to be their socks are uh their socks feel scratchy or they feel sore or they want to be wearing socks and shoes that are multiple sizes too big or something like that give that a try have a look at the sister sensory seamless socks um and see if that makes a difference i hope that helps amir.
FINAL THOUGHTS
please get in touch and let us know um if that has uh made a difference for your mornings so normally we would have renee’s action points uh for the week at this point but alas you’ll have to just um you’ll have to just uh wait until next week um to hear those but i guess i would say if anything here has rung a bell for you around your kiddo struggles some things that you’re seeing for your child please do get in touch please reach out to um hello at autism360.com we would really love to support you um and to be able to help you to improve your child’s quality of life and your own that’s so important um so it’s been lovely getting to chat with you about uh these things about um our kids who do struggle with that demand and control anxiety um we will be back next week with another uh topic relevant to autism parenting i can’t wait to see you then and until then 360. you.
