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.

 

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The 360 Method - Demand Avoidance and the Spectrum
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The 360 Method - Demand Avoidance and the Spectrum
Description
This week Ella will talk about typical markers and flags that your child might be struggling with some demand avoidance as well as strategies you can use to support your child to cope with demands.
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Autism 360
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