PDA (Pathological Demand Avoidance) comes under the autism umbrella and is anxiety led making it very difficult for children or adult PDAers to agree or commit to even simple every day tasks. As regular readers of my blog will know my son (12) could not get the right support for his PDA at school and is also dyslexic so is home educated and has been for 2 years. I often get messages from parents asking how I get my son to engage or what a typical day looks like so I thought I would try and explain, like everything to do with PDA it’s not that simple…
What is a typical day?
Truth is there is no such thing as a typical day for my son and I. Yes our week had some pattern in as much as my son spends the week with me and the weekend with his Dad, but other than that it is pretty fluid, it has to be, the very nature of PDA demands it. In fact fluid is a good description also of the make up of a PDAer you try to pin them down or contain them they will slip through your fingers and make there escape or sweep you up if you get in their path. So the mantra when supporting an autistic child with a PDA profile is ‘go with their flow, not against it’. It may seem a strange way to parent or even to teach, but it works, it is the only thing that will in my experience. I use a low demand approach with my son which basically means I do not impose arbitrary rules or demands which helps him feel in control and reduces anxiety, you can read more about this approach HERE.
So our day….
Like many autistic people my son finds it very difficult to sleep and so his sleep patterns are not the ‘norm’. His waking times have changed over the two years, (when he first came out of school and was highly traumatised he found it hard to get out of bed at all during the day for a couple of months), these days he’s up and about by around 11am, if he’s not I (with his prior consent) take him in a drink. On first rising he needs a couple of hours with not much going on most days. You can’t rush him and there is no point trying to direct him, if he is up to talking he will start a conversation if not I just leave it and simply provide him with food and drink. My son has only very recently started selecting his own clothes after I realised finding them was too much of a demand, now they are in labelled draws so he can do it almost without thinking.
Then in the afternoon..
By around one my son is usually receptive (providing he hasn’t had a very busy day the day before). Currently my son is very engaged and wants a lot of stimulus (which is not always the case) and it can be pretty intense to be honest, but I have learnt to harness every opportunity so in the afternoons we generally talk, play board games, search the web, watch TV and follow threads of learning. It doesn’t sound like much but all this seamlessly connects with his learning. We usually have two or three topics on the go so amongst all of this I will bring to his attention the parts that connect with those and we may explore through conversation, a tv program, books or the internet and see where it takes us. We dip in and out so he has plenty of relaxed periods and it is led by him so if he is quiet we don’t talk, if he strikes up conversation I go with it, if he wants to do something I am ready. It really is a case of making myself fully available to him, it is not always easy but it is necessary.
Later in the day is when he is most receptive, it is when he may decide he wants to create, follow something up, cook something, make a model, do a worksheet (worksheets are his chosen method of documenting his education because he wanted it to be more formal but can not spend hours at a table) learn a new maths approach or start a new topic. This is the one time of day when it looks like he is being home educated but it is not imposed it is led by him. My son will work in very short burst and needs plenty of processing time so he will do a bit and then stop, maybe watch tv, maybe just stare into space but these times are important too, this is him taking it all in. He can have enormous amounts of energy in the late afternoon and evening, it can be exhausting but I have learned to work out the pattern of my day around it.
My son has a self imposed bedtime which is currently 10pm although he may go upstairs before that to watch a film or have some down time, 10pm though is the time brushes his teeth, puts on his pjs and settles down. Like many autistic children and adults he has problems getting off to sleep. He has a prescription for melatonin he has never taken it and I respect that choice. Although I have no screen time restrictions over time my son has chosen to turn off all screens at 10pm ( when there is nothing to fight against it is amazing the wise choices he has made once the novelty of the freedom wore off), however it can still take him up to 3 hours to get off to sleep. His dog Oatey is allowed in his bedroom and is extremely good at helping him settled as he doesn’t want me around now he is older (as some autistic children do need their parents to settle). Sometimes therefore he doesn’t go to sleep until 1am but because he is home ed he can sleep in. The sleeping was far more of an issue when he was at school and then he often didn’t drop off until 4am and needed my constant reassurance (due to school based anxiety) only for us both to have to be up at 7.30 am which didn’t help an already very difficult situation.
Interacting with the world
Most days, except for essential trips, we do not go out anywhere much, but other times we do plan trips out to support his education and for life experience. He loves museums and theatre so I tend to go with what he likes and throw out ideas form time to time and see what sticks and take it from there. I always have a built in get out clause however and don’t make any hard and fast plans. I find that as long as my son is aware that he is able to go when wants to he is able to engage in the activity 9 out of 10 times although it may only be for a short period. I have found it is very important that I allow him to come home when he has had enough weather that is after 2 mins or 2 hours because that builds trust for the next time, he knows he will not be trapped there not able to get away.
My son visits family and his old school friends as often has he wants, which is not as often as I would perhaps like but it is enough for him. He was really lonely when we first started home ed because he wasn’t up to social interaction but still craved it, we seem to of found a place he is comfortable with now. I never push him to be more social although I do let him know of groups he might like but with no pressure or expectation.
I have found my son is much more responsive, willing to go and try new things when on holiday as long as the holiday is not too long so we will often take short breaks (I have found 3 to 4 days is optimum especially during late spring, early summer and again in the autumn when it is not too hot or too cold or too busy hopefully. I think this more willing attitude is because he finds it far easier to agree to do things when he knows it is a temporary situation and will not be expected of him all the time when he goes back home.
Knowing when to back off
Sometimes things are too stressful for my son to engage for example, last year, when we had to move house he was out of sorts for a couple of months. There is no point trying to teach him at this time because he just can’t cope with anything above the bare essentials but the beauty of home ed is it is very flexible, it is also one to one so we can make up on lost time quickly by making the most of the times when he is engaging intensely with things.
At the weekend
When my son is at his dads at the weekend he does most of his going out for the week again I think he is more able to because he is only there for a short time. He takes ‘home work’ in the form of worksheets to do while he is there so his dad can see what he has learnt and my son can recap on the weeks learning. This works really well for us and gives continuity. He is usually really proud to show his dad what he has learned.
Everything we do is child led so my son doesn’t even think he is learning most of the time. If you asked him what he did all day he would probably say ‘nothing’ and it almost has to be that way because if he believes he is doing nothing other than hanging out there is nothing to avoid. His education is woven pretty seamlessly into our life, it is lead by him but he doesn’t even realise really he is leading it. I follow my child, not convention, and do things in the way that best suits him. Things are not perfect but not a day goes by when my son does not surprise me by taking another step forward in taking responsibility for himself and his education.