I want to address some of the specific and dominant areas of pathological demand avoidance syndrome as I know how much they become a feature of your life if you’re parenting a child with PDA. A note to any adults with PDA – I’m writing only based on my experience of parenting a child with PDA and would love to hear your experiences. Also, although I’m focusing in on PDA criteria, I’m sure those with other conditions on the spectrum can relate to the following as well as those affected by ADHD. Also, parents of kids without any of these conditions…..you may still be able to relate and/or take something from this.
Future blogs will address other criteria but for now I want to discuss my experience of the following two as they’re inextricably linked. The wording of the definitions is taken from http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx
1 Excessive mood swings, often switching suddenly People with PDA may switch from one state to another very quickly (eg from contented to aggressive), driven by the need to be in charge. This may be in response to perceived expectations.
2 Severe behavioural difficulties A large proportion of, but not all, people with PDA can have real problems controlling their temper. As children, this can take the form of prolonged tantrums and violent outbursts, as well as less dramatic avoidance strategies like distraction, giving excuses etc. It is essential to see these outbursts as extreme anxiety or ‘panic attacks’ and to treat them as such, with reassurance, calming strategies and de-escalation techniques. Sometimes a child with PDA can appear very anxious at home but remain relatively passive at school (a learnt coping strategy). In situations like this, parents are likely to feel very isolated and inadequate. In other cases, outbursts are far worse at school, where demands may be much greater, and this can lead to multiple exclusions at an early age. For some children, this anxiety can develop to such an extent that they become school refusers.
“Excessive mood swings, often switching suddenly” Big time. As in, it’s like living with two different people. Which in some ways I can handle and get my head round. As individuals we’re all so incredibly complex and capable of such contradicting and conflicting thoughts and emotions. And we all have varying temperaments. What I find so hard in my son though is firstly, the complete unpredictability of the switch in mood and secondly, the lack of apparent impact on him when he comes out of it. I say, “comes out of it” because it would appear he’s been in a state he has no control over.
If I think about the two states I most commonly find myself in, in relation to my boy, the first I would call “the calm before the storm state” and in my head would maybe have the start of the Jaws theme tune playing in the back ground. The scene is quiet and calm. But I know it won’t last. I know to the untrained eye that all appears well but I’m experienced enough to know that it’s only a matter of time. Being in this state is pretty anxiety provoking…..remember being a teenager and knowing all day things are going to kick off when you get home because your Mum’s found out you slept over at your boyfriend’s and not your best friend like you said? It’s liked a warped, grown-up version of that. And once you’re home it’s walking on egg-shells which is a phrase I know many PDA/Spectrum parents relate to. What makes me sad about this state is that from time to time, especially the more I have deeper understanding of my son’s conditions and apply them to my parenting, we have an evening with no major meltdowns. A lot of “preventative” work goes into that evening, but still – when it’s over and I’m absorbing the fact that it happened, I feel sad that I hadn’t known earlier that it was going to happen. Sad that I spent all day holding anxiety somewhere within me and sad that I spent all evening anticipating a meltdown.
My counter strategy to this is the simplicity of ‘take each day as it comes.’ A commonly used phrase but one in which, if I don’t just pay lip service to it, can work wonders. Carrying forward yesterday’s experiences if they’ve been shit, is a bad idea. There have been times where we’ve been in a phase where every day really does seem to bring new meltdowns – during those times it can be challenging to ‘start each day a fresh’. I think there’s a subtle link though between me resigning myself to a bad day and unconsciously putting less energy into the strategies that can help.
The second state I find myself in re. extreme moods swings/meltdowns is that of recovery – it sounds so dramatic but I honestly feel traumatised! I carry the trauma with me into the next day when I go to work and go about my day. It feels so surreal because nobody would know, unless I tell them of course, what I’ve been through the night before. My son recovers from his meltdowns disturbingly quickly given the length and intensity of the meltdowns himself. In some ways it makes sense I guess since he’s just released a whole lot of anxiety. Obviously I’m glad that he’s able to move on and “come out of it’….I just can’t catch up as quickly though!
I’ve learnt to “postpone” my own response to later on so that in the moment I can focus on him and simply be with him since he may well now be in a good mood and wish to engage. It also feels important to be around to offer him some calm reassurance as there must be a part of him “recovering” too. If possible I take a moment in a different room. Ideally though I save it for later and process what happened and try to learn from it – nine times out of ten I can see the trigger and something I could’ve done differently. This is sooo important as it empowers me – I find so many aspects of parenting a challenging child disempowering so it feels good at times to feel like I can make a difference.
Overall, re. my own recovery from meltdowns, it’s massively about getting a break whenever I can. Which isn’t as often as I’d like but is so vital. For my son just as much as myself if not more since the longer I go without a break, the more worn down I get and less able to put in the energy it takes to apply all the strategies that can help.
It absolutely has helped me to see meltdowns as panic attacks and respond accordingly. Even just changing the termanology from tantrums to meltdowns has been useful.
My son falls into the category of coping at school (I say coping….I know he struggles internally) then releasing his anxiety at home. Which can be tough for us both but again, simply having this information is empowering as it allows me to anticipate his anxiety levels after school. This is less about thinking “oh no,,,there’s gonna be a meltdown” and more about putting in place strategies to decrease anxiety (essentially removing as many demands as possible) and reminding myself I have the resilience to manage/survive a meltdown should one occur.
Ultimately, unlike my son, I don’t have PDA or Aspergers or ADHD and as such things are 100 times tougher for him than me. Also he’s a child which makes him vulnerable where as I’m an adult, and have autonomy. I think reminding myself how much my child needs me can be daunting and touching in equal measure. Overall, I remind myself it’s such a privilege to think I have the job of making the confusing world of an anxious little boy feel safer and more okay.