Jo Richardson is a parent advocate and author from the UK. Richardson blogs at Different Not Deficient on a variety of different topics related to parenting, mental health, autism, and Pathological Demand Avoidance (PDA). Last week she shared how PDA affects her daily life and how others can recognize and support others with PDA tendencies. The article below was originally published on her blog on December 6, 2019. It is reposted here with her permission.
When thinking about life hacks for us PDAers, the first obvious answer is ‘do what you want, when you want, with no demands put upon us’. Easy, right? Wrong.
I have sat down to write this article over a dozen times; have had the words clearly in my head but when I have found a quiet moment with my laptop, a wall drops down between what I want to do and actually being able to do it. I am an autistic with a PDA profile and sometimes the demand of doing even something that I really want to do, is impossible.
So what, then? What would make our lives easier so that we don’t hit a brick wall every time we want to do something?
1. The main one, in my opinion, is to reduce as much anxiety as you can. Again, I know how easy that sounds and how difficult it is in practice, but read on.
Having PDA doesn’t mean that you avoid every single demand/potential demand that you come across. It’s fluid. When you are less anxious and are in control, the need to resist the demand – to gain control – is far less than the times when you feel out of your comfort zone and your need for control is sky high. With this comes a much better chance to be able to do the things you want to do.
2. Find your tribe. If being autistic makes you feel like an alien on this planet then being PDA can sometimes make you feel like a space monster.
By finding your tribe, you’ll find that you’re not alone and that these people think and react in the same way that you do, plus these are people who you don’t have to mask in front of. Having the freedom to be yourself is like having the best stretch in the comfiest bed.
The sense of belonging is one that every human in this scary world yearns for so find those that you belong with. They’re out there, I guarantee it.
3. It’s ok not to be able to do things when you want to, sometimes. Don’t beat yourself up for not being able to go see that film you were planning on watching or another activity that you can’t get past the wall to do. Personally, I find it increasingly frustrating when I want to do something (like sitting and writing this article) but just CAN’T. I feel it’s almost a vicious circle; we want to do an activity, can’t, get frustrated which causes anxiety that leads to a spike in needing control and inability to do activities.
Give yourself a break. That’s not a demand…!
4. Let friends know that you may or may not join them on an activity. Reduce the pressure and, therefore, the demand to attend. If your friends know you and accept you for who you are, they will be fine with this.
5. When you are feeling very anxious or overwhelmed, remove all demands, or at least reduce them as much as you can. The more demands are perceived or placed on you, the more you will be pushed towards meltdown – and no one wants that.
6. One way to reduce the stress and anxiety of responding to a demand is to respond by text or email. It gives you time to think of a way to reject the demand in a less abrupt way and it will remove the pressure of having to do it in person.
7. Find little things that you can control around the house. This is a good hack if you have a PDA child or teenager. If they like being in the garden; cordon off a section of the garden that they can do what they like with (as long as it’s not very dangerous to themselves or others). DO NOT interfere with their section unless they have specifically asked you for help. Let them be in charge of what film is watched or what takeaway you are going to have.
Having a range of things that you can be in control of will help to keep your anxiety down and you can go to these things and tinker when you feel a little anxious.
8. Regarding PDA children and teenagers; I know the bedtime battles that you have with them as they see an enforced bedtime as a HUGE demand. The kindest and best thing for both them and you is to let them stay up until they are ready to go to bed. Let them play in their bedrooms or watch TV. Believe me, I know the pressure of trying to raise your child how you are told to do it; with strict bath and bedtime routines etc. But these things are awful for PDAers.
By trying to enforce these things, all it does is cause them a great deal of anxiety (often leading to them lashing out or being in a great deal of distress) and you a great deal of stress and the potential of being hurt when they do lash out.
9. Have an impulse buddy! I don’t know about you but I have very poor impulse control which have led to me painfully regretting some of my impulsive decisions.
If you have someone you trust who is sensible and has your best interests at heart, just run your more extreme impulses by them before jumping in head first.
I have a very dear friend who has ‘Jo cards’ that she uses when I am either going too far or if one of my impulsive ideas is totally nuts and one that I will regret. Yes, these cards can be seen as a demand, but I have total control over whether I listen to her or not.
Having a card shown to me is often like splashing water on my face. It alerts me to look at what I’m doing and assess it with clarity rather than slapdash over excitement.
10. Have all your bills on Direct Debit payment to avoid the demands of having to pay bills when they arrive.
11. If you have jobs/chores that need to be done, they can very quickly become hulking great demands that you just can’t make yourself do. Try to limit how many jobs a day you do; for example, do one job in the morning and one in the afternoon with lots of demand free, relaxing time in between.
12. Demand free breaks! Sometimes it feels like everywhere we look there is demand bearing down on us that sends our anxiety through the roof. Find ways to step away from it all, every day or as often as you need, where you can just ‘be’. Just stopping everything and go with the flow of what your brain decides it wants to do. It puts you right in the driving seat which gives us all that lovely control that we thrive on.
13. Learn how to meditate. It is something that you can do for two minutes or two hours. But it is a great way to calm the mind and to reduce your anxiety.
14. Find what works for you. I don’t know about you but, from a young age, the overwhelming and ever present demand of conforming and following precise life points has been the most intense and inescapable demands of my life. Go to school. Get a job. Get married. Buy a house. Have children. Have the same cookie cutter life as all the Smiths and the Jones’.
I tried, HARD, to fit into these moulds but always ended up sabortaging them or being able to do them for a short time before the need to do something else took over. I have moved 27 times in my life. I think this is largely due to not wanting to be stuck in one place for too long; settling down and being forced to stay still while my brain is screaming to run and be free.
This is something that I wish someone had said to me all those years ago;
YOU DO NOT NEED TO CONFORM.
You can be anyone, do anything, go anywhere – as long as you stick within the confines of the law; go for it. Yes, having money is incredibly useful and, therefore, you have to work in order to get money, but do something that you LOVE. Do something that feels right to you. Find your niche. You don’t have to live up to this expectation that is put on us to be like everyone else and to do things just to tick them off the ‘things I must achieve in life’ list.
15. Read books and articles by other PDAers. It is a liberating experience reading someone else’s words and for them to resonate in your bones like they could be talking about you.
In particular; Harry Thompson’s PDA Paradox is a fantastically wonderful book. I engorged on it and read it in two sittings and feel all the better for reading it. I highly recommend it.
Sally Cat is also brilliant and is full of great information; as is their book; PDA by PDAers.
For parents of PDAers, Steph’s Two Girls on Facebook is very very good.