My son is diagnosed with ASD but fits the criteria for PDA (pathological demand Avoidence) an little known or recognised condition on the autism specturm. For more information on PDa visit the PDA society website: https://www.pdasociety.org.uk/
It all started two summers ago when attending a PDA workshop and the speaker said at one point that in time of really extreme anxiety a ‘no demand’ strategy may need to be implemented.
This was where my son was but this approach sounded radical, it went against everything I understood about being a ‘good’ parent. I was however desperate, I could see my child slipping away and taking me with him so I decided to give it a try…After all what did I have left to lose?
My son was at this point unable to attend school or often the interventions they had put in place as an alternative. Actually most days he was barely able to leave his room, hold a conversation, take any interest in anything and spent many hours a day staring at the ceiling, He had violent meltdowns and often talked many times about wanting to die. He was barely eating or sleeping. It was just before this I had brought him the hamster as detailed in my previous blog.
So I went home thinking about no demands….I had lots of questions, lots of worries and lots of doubts about how this could work. So I stop asking my son to eat or bath or do anything? I just stop being a Mum? What will people think or say or what of I am accused of neglect?
I began to realise that not demanding anything was going to be hard and that demands came in many forms. I also realised that it would not be a case of not doing anything but actively and consciously taking away the demands that I was placing on my child. It took me a few months to put this into place fully although I did reduce demands significantly. The catalyst came when he was physically sick with anxiety about going to interventions as I described in my last blog and I realised things had to really change so finally decided to implement no demands.
I went to see my son in his room, I told him I understood that I had been putting a lot of pressure on him to do things because I cared but I was going to stop that now as I realised that it wasn’t because he wouldn’t but because he couldn’t. He cried and confirmed he really couldn’t and we had a hug. That was step one.
Step two was about me letting go of everything that was not necessary and most of all ditching what society had taught me about what being a good parent was parent and how people might react to me no longer conforming to that. I put on my big girl pants, pulled them up high and prepared to suck up whatever was thrown at me.
What I stopped doing
I stopped asking my 10 year old son to bath or brush his hair or eat or telling him when to go to bed. I stopped demanding please and thank you, be good, talk to relatives. I excepted that I would need to shop online, restrict visitors to the house, and not go out and leave my son with anyone else for a while. There are so many hidden and more subtle demands we place on our children or things we consider as ‘essentials’ which are not really that at all. I must add of course that my son was 10 and that what is ‘really essential’ differs across age groups.
What I did (without expectation)
- I put out clean clothes in the morning and pyjamas at night.
- I ran a bath each night and told him ‘there is a bath run, if you would like it’
- I put toothpaste on his toothbrush and told him I had.
- I took food to his room and placed it near him. Often wrapped foods he could eat any time rather than meals or home baking that smelt good. I steered away from strong smelling foods and never asked him to eat or commented if he had or hadn’t I just took uneaten food away.
- I made regular contact with him but kept talking to a minimum unless he instigated conversation. I regularly let him know he was loved as he was and not on condition of what he did.
- I ensured his Dad (from whom I am seperated) was on the same page and explained that my son needed to be in control of visits.
- I told him the time at bed time ie ‘its 9 o’clock now, there are pyjamas there if you want them.’ Without ever telling him to go to bed.
- I lifted all screen restrictions.
- I listened to him and respected his wishes when he offered them.
What happened next
- In the first few days – He started coming down when the house was quiet and lurking about after a couple of weeks he would come and sit quietly on the sofa with me. I acted normal and did not comment on this as an unusual even.
- He started showing me things and playing with his toys, which he would hide when I came in. Again it was important that I did not comment.
- Three weeks in he tided his room and came down to tell me.
- 4 (smelly) weeks in he used the bath I ran and brushed his teeth once a day.
- He started eating more over the next few weeks.
- 8 weeks in he started telling me it was 9 o’clock, time for bed and changing into his pyjamas.
- 10 weeks in he started talking to me about wanting to be home educated and not returning to school or interventions. I derigistered him from school
- By 4 months in his was bathing once or twice a week and washing his hair and changing his clothes, he was wearing his PJ’s at night and was begining to engage with home education. He was showing interest in his lego and youtube again and was able to go out on occassions.
- We went on a caravan holiday and a trip to Legoland.
- By 8 months he was fully engaged with home ed, bathing three days a week, changing his clothes regularly and able to cope with the odd visitor.
- We had to move house at 8 months which set him back for a while but he settled after about 3 months and the improvements began again.
- 12 months in, he visted his dad regularly and stayed overnight.
- He asked for more demanding work in home ed.
- 17 months in. Something changes everyday for the better, This week alone he has been shopping for clothes with his dad, he has started playing the guitar again, he is seeking out company for most of the day, he is engaging in research about his family tree and walking the dog. He brought and paid for a birthday gift for me.
In short today my son is a sensitive and often anxious almost 12 year old who is also happy, engaged, social, polite, and interested, he self cares, bathes everyday, wears a variety of clothes and has his own style. He chooses not to cut his hair but keeps it washed and brushed. He goes to the dentist regularly and cares for his own teeth. His room is normally the tidiest room in the house, all I have to do is put the hoover around it.
He has his own interests which he engages with me about. We share quality time together and apart. He actively engages with his own education, suggests topics and things he would like to learn more about or improve upon. He still has days when he doesn’t wish to go out because he needs to recharge and days when he can not cope with visitors to the house and I still respect this. The PDA has not just ‘gone away’ and there are still days when he finds things more difficult and so I need to keep this in mind and make adjustments accordingly. If my son says no to something then I accept that always.
We talk and we share and we make the effort to understand each other and work collaboratively and as a result I have never felt the need to implement demands again or to push or to stretch him as is recommended in many autism strategy theories. I trust him to do what he can when he can. He is doing everything he needs to do as a child and I am doing everything I actually need to do as his parent, ie supporting, nurturing and understanding.