“DON”T TELL ME NEED!” T shouted at me in the middle of a recent meltdown. I had just finished saying “You need to stop hitting me”. I know that need is not a good word to use with PDA (Pathological Demand Avoidance), especially in the middle of a meltdown. It was a good reminder for me that the words you use when communicating to someone with PDA can make a big difference to how they respond to you and whether you are helping to escalate or deescalate a situation. I’d like to share what works for us a lot of the time. Nothing works every time! That is one of the challenges of working with a child with PDA. You always have to be ready with another strategy.
photo credit skitterphoto
Here’s my disclaimer 🙂 ……. Always listen to your child and your own instincts. They and you know more than you might give credit for. I am not a medical Dr an OT, a Psychologist, a speech therapist etc. What works for us may not work for you but please keep an open mind and consider how these might work for you.
After working out how the Pathological Demand Avoidance (PDA) profile of ASD differs from the typical presentation of autism we started using different strategies to support T both at home and at school. I found it quite difficult to begin with as many of the strategies felt counterintuitive and also as if I were being manipulated by my child. Working through these strategies I have come to realise that not only is it part of PDA to manipulate the world around you in order to gain control but that it is a necessary part of reducing the anxiety that results from a loss of control. Children can have many demands placed on them daily, so I am comfortable allowing our kids to take the lead and make a lot of their own choices. This works particularly well for kids with PDA. It has been a journey for me personally to get to this point. I was most definitely a helicopter parent with my eldest. Parenting a child with PDA has taught me to step back and give my kids more control of their daily actions. Let them be in charge whenever you can! You’ll be there when they make mistakes. I think they trust you more for letting them work it out, fail and learn, knowing all the while that you are there when they need your help. In the end we all want our kids to become confidently independent and they need a safe space to practice their skills.
photo credit Anete Lusina
Before listing some of the strategies that have helped us support T I’d like to ask you to do a simple exercise. Think about a typical day and think about how many demands your child faces. These may include things that you would not previously have considered as demands until you were faced with the behaviours you see from your PDA child. Try listing everything that you ask your child to do from when they wake to when they go to bed. You probably will not have to finish the list in order to realise how your child’s anxiety can be high before they have finished breakfast! (Get out of bed, go to the bathroom, clean your teeth, get dressed, put you pjs into the basket, sit down, eat your breakfast, lean over your bowl, take your cup to the sink, stop blowing bubbles in your milk, stay at the table, wash your hands….you get the idea!) When I realised just how many things I was asking my demand avoidant child to do I was able to start seeing how I was helping to increase his anxiety levels from the moment he woke in the morning. No wonder he was resistant to getting into the car by 8:30am!
photo credit Josie Stephens
1.Pick your battles Think about what is important. Does it matter if the shoes go on feet before the child gets in the car or can they be carried and put on while driving or when you arrive at your destination? If there is one demand that you are going to insist on, think about what that is and decide what others can be let go.
2. Disguise Demands One of the first things to do in reducing your child’s anxiety is to consider how you phrase what you are asking of them. Ideally you rephrase demands so they no longer sound like demands. Here are a few words to avoid and how to rephrase them
- Instead of “You need to put your shoes on” – Try “Your shoes are just here in the kitchen”
- Instead of “Don’t put your bag there.” – Try “Would it be ok if you put your bag in the laundry?”
- Instead of “We can’t eat ice cream before dinner.” – Try “Ice cream would be a great idea after dinner! Should we have sprinkles too?”
- Instead of “No” – try “It is difficult to ride bikes when it is dark outside but we could find a time go for a ride tomorrow”
- Instead of “You have to wash your hands after using the bathroom – Try “I really want to be sure I don’t have any germs on my hands so I wash my hands after I use the bathroom.” I am amazed at the number of times that my son echoes my words and then does what he is saying when he has previously refused my requests.
- Instead of “Stop throwing the ball” – Try “I wonder if you could roll the ball through the tunnel?”
- Please works well 🙂 As parents we often ask our kids to say please and thank you but forget to offer those signals of respect to them.
photo credit Ibolya Toldi
3. Offer Choice In order to give control to T we offer him choice. If it does not matter how tasks are done then we give him control over the order of events. “ Would you like to clean your teeth or put pjs on first?” At first this strategy would cause him to reply “I don’t want to do any of those.” When he realised that I could choose or he could choose which to do when and he had control over his routine he became much more relaxed. Now if he needs extra control he will decide and then change his mind and switch the order. It makes no difference to me and all the difference to him. He will still often automatically respond “no” eg. as he walks to hang up his towel. It is such a well practiced word from him that he says it without really meaning it.
4. Give an alternative plan If T has high anxiety and is pushing against even the few demands we are choosing to tackle I ask him “What do you need to do in order to finish up?” I know I stated that need is a word to avoid but it is ok for us when we are asking T was HE needs. In our house ending any kind of preferred activity (screen time usually) is a big struggle. What T needs to finish and feel successful can take more time than I am comfortable with but the more I try sitting back and letting him take the lead the more I see what he really needs. I have been surprised how often he does the last thing he HAD to do and then just stopped! I am definitely still working on being consistent with this one.
photo credit: Olya Kobruseva
5. Visual or non verbal prompts Our little guy can talk and talk! Often when I am trying to get him out of the bath or get dressed he is talking without drawing breath! If I try to interrupt him to ask him to get dressed he either completely ignores me and continues on his topic or becomes agitated. Instead I can hold up the towel and shake it around a bit and he knows I am asking him to get out of the bath but I am also listening and he can continue telling me all about his board game win. I can point to the pjs on the floor and he can keep talking as he gets dressed. This takes practice as reading social cues does not usually come easily to autistic kids. We have this conversation ahead of time. “When I hold up a towel at the end of bathtime it means it is time to get out. Does that sound like a good plan?” I want to give him the opportunity to make a different plan or to take the plan on as his idea so he feels in control.
Are there some prompts like these that would help a particular time in your day? Pointing to shoes for example when you are wanting to go to the car or holding up a plate and pointing to the table to indicate it is time for lunch.
photo credit: Andrea Piacquadio
6. Don’t React Ok. I am not going to say that this is easy. I have come a long way on the reaction front. I used to feel my blood boil as soon as T lashed out physically or raised his voice or said things to me that hurt my feelings. I would end up doing exactly the same to him. I would say things in order to try to make myself feel better but that I later felt terrible about. I did not stay calm in any way and held a grudge for a long time. I now understand that those actions and words are coming from a place of high anxiety and are an attempt to stop uncomfortable words and actions from the other person. By reacting in kind I was adding fuel to an already blazing fire. One day I read about co-regulation and it made so much sense to me. The idea that modeling the type of calm voice and body that my child can mirror to calm their own bodies and minds was such an ‘aha’ moment. The old me would not be able to believe how calmly I can now weather the raging storms of the meltdown. I love that T trusts that I can handle his feelings and that I can provide a safe and predictable relationship for him to work through those feelings and recover without shame or fear.
7. Allow appropriate physical distance Our T-man does not like to be held or hugged when he is mad. If he is sad, yes, he wants hugs. If mad he can physically lose control and so we have to help him to calm by stopping the physical aggression. We used to think that holding him firmly was calming. That’s what I had read about meltdowns. Well, not for our child. It was not until quite recently that we found this was not helping. He started to have the self awareness as well as the communication skills to be able to tell us when he wants to be alone or least not touched. If we are able to stand back and not be within attack range he will sometimes now tell us he wants to be alone or he wants us to give him space. Listen to your child and don’t always assume that just because something works for a lot of people that it should work for your child. Also don’t assume that what has worked in the past will continue to work. That goes for all that I say here in this blog. These things work for T but they may not work for your child. I would like to think that some of the ideas can help your child but if not they might be a springboard for you to think about other alternatives to what you are struggling with.
photo credit: Ketut Subiyanto
8. Communicate in writing or spelling out loud T’s psychologist suggested writing a word on a whiteboard in order to communicate. Rather than saying “Let’s go to the swing” as a means to deescalate a meltdown we can write SWING. We also tried spelling the word out loud. This was sometimes enough to change the pattern so that T stopped and considered what we were suggesting. This is my simplistic understanding of how this works. When melting down our brains are in flight or flight mode which is driven by the amygdala. Doing something as simple as reading a word can help to engage our cerebral cortex and help us come out of survival mode that happens when we ‘flip our lids’. I am still getting my head around this. If you have found any good articles that help to explain this please send me a link in the comments. Here is one that I liked.
photo credit: Pixabay
9. Allow time and an escape plan As I metioned above, T has recently become a lot more aware of his need for time and space. He also needs to save face when he is melting down. If he is raging and wants us not to look at him or to go away we do that so he can be mad without an audience. I never want him to feel ashamed about how he feels and if that means that he needs to do it by himself then that is ok. Sometimes he wants us to stay near him but not look at him. I want him to know that all his feelings are valid and that we as his parents can handle them.
10. Make them laugh This strategy is one I have a hard time with doing myself as I am one to talk about feelings. However, I see how well it works when my husband does it. If T is just on the way to a meltdown or on his way to recovering having a joke or making some silly sounds can be enough to make T laugh. It is really hard to be angry when you are genuinely laughing. If we have gone in too early for the laugh then T will tell us he does not want to laugh and we can use another idea. T’s recent ability to communicate his needs has helped us to know when this strategy is working.
photo credit: Gabby K
11. Reflective recovery After he has self-regulated and is again able to calmly communicate we talk about what happened. Often I will wait until well after he has calmed down so as not to send him back into fight or flight mode. At times he will apologise for something he said or did and say he did not mean it. I always tell him that I understand that he did not mean it and it happened because he was out of control. We talk about how all feelings are ok. It is ok to be angry. It is ok to be frustrated. It is ok to be furious. We can not control our feelings but we can try to control how we respond to them. It is not ok for his actions to hurt others. We discuss how we can both do things differently next time and sometimes even role play the scenario with each of us having a turn in his role and mine.
I hope you are able to take a few ideas from this list. What do you do to maintain a low demand environment? I am always looking for new ideas to have ready to use. Most of the strategies I have listed work about half of the time so a good range of ideas is very helpful.
I don’t know about you, but when I am feeling stressed in difficult situations with our son my mind goes blank and I can easily revert to old strategies.
If you have a hard time remembering what you can try in the heat of the moment I recommend having a list on a on your phone or somewhere easily accessible. Visual prompts can be good for us too 🙂
