Training for National Education Psychological Service (NEPS) professionals about the Autism Spectrum Condition Pathological Demand Avoidance (PDA) from a parent

Parenting
By the time I met with NEPS professionals, I was highly anxious and stressed. I had also learnt how to operate in a low key, non confrontational way with my son to help him to do things. With PDA, it is a mistake to look at the parenting style and simply deduce that the child's behaviour is a result of this, when the reality is the parents' learned coping behaviour is a survival response to their child's difficulties.

My child with PDA lives with high anxiety, an essential need to control his world on his terms, and avoidance as a default position.

Avoidance as a default: the ultimate avoidance is not to go.
For school, this means getting to the building the next time will be affected by the handling once in the building this time. PDA strategies at home will only continue to work if school is also PDA sensitive.

Challenges
Advice
Not being able to get out of bed.
 Physically placing my son's feet on his bunk ladder in a humorous way helped.
Not being able to get ready.
 Recognise that there is often extensive and exhausting work done at home before a child with PDA is ready to leave.
Sometimes reaching our house front door in full uniform and not being able to go further.
 Make the uniform, shoes, optional. Allow slip on shoes. Minimise the preparation needs.
Sometimes pacing around the car in our driveway but not being able to get in.
 Make the school start time flexible
Sometimes reaching the school carpark but not being able to get out of the car.
 Have a class friend meet, or teacher waiting, or use a side door.
Sometimes getting to school late.
 Prearrange a way to join the class without punishment.
Sometimes missing school altogether.
 Continue contact via email or other means so the child remains part of the school community.
Behavioural problems when pressured by parents.
 Understand when parents say they can't make their child go: pressuring a child with PDA until they meltdown should be avoided.
Assumptions made by professionals that this is a home problem.
 Recognise that an inability to go to school is a problem that needs to be cooperatively addressed by the school with the parents. PDA strategies, reducing demands, allowing flexibility and giving my son a way out of school at any time enabled him to go.
A child shutting down as he trys and fails to make things work.
 Recognise shutting down symptoms are harder to spot than melting down symptoms. My son masked in school and was described as 'dropping out in the classroom'.
Parents struggling as they try and fail to make things better.
 Work in cooperation and collaboration with families.
Professionals who come across as not listening and not understanding as they try and fail to make things better.
 Avoid a judgmental approach with parents who are struggling. Learning how to effectively parent a child with PDA is complex and challenging.
Eventual permanent breakdown of school placement.
 A child's education should not be abandoned once they are unable to reach the school building.
Complete shut down of the child
 This will create longer term difficulties for child and family as they have to begin a long slow process of recovery. Things should not be allowed to get to this stage.


The problem for my son's education in our contact with professional services can be summarised:

NEPS: “We are a school based service. We cannot work with a child until they reach the school building.”
HSE: “We have no role in education.”

All support services should be working together with parents in the interest of the child.


Thank you for your interest in learning more about PDA

Popular posts from this blog

Who is making things worse? A comment on a fb support group got me thinking. The person asked what about when the pda parent does everything wrong and makes everything worse. She commented that nobody writes that article. I have always tried to write practical, real suggestions that might help because that was what I couldn't find when I was struggling. It doesn't help to know how hard things can be, I thought, because I'm living it. But the comment got me thinking. I remembered a time when I felt like everyone else was making progress, except me. Parenting pda is counter intuitive. Things you feel you should do usually have the opposite effect to the one you want. It is extremely difficult to explain this. You look like a parent who never says no. You never say no not because you don't care or because your child is spoilt, but because that is often what it takes to enable your child to function. I am making school optional today because ...
Read more
What home schooling looks like in our house. Don't Replicate School People often ask how do I manage to home school? Does it take up a lot of time? What curriculum do I use? Am I qualified as a teacher? I imagine I thought the same things before I started. That there was only one way to do it, and that was to copy a classroom and try to be like a school. Except we weren't home schooling for religious reasons, or location reasons. We were homeschooling because school didn't work for my son. So why would anyone think replicating a classroom would work? When my son was first out of school, I made efforts at timetabling the mornings for learning, and buying books, and using online lessons. The meltdowns I thought were caused by school continued at home. But once I understood PDA was the challenge, I changed my approach and gradually things started to work and the meltdowns stopped. Priorities Remember education is broader than academic lea...
Read more
Pathological Demand Avoidance.  Avoidance is the default. My son avoids the everyday by: ignoring me (He says sometimes he tunes me out, and sometimes if he's concentrating on something else he doesn't hear) talking about his game (I'll talk about socks, he'll talk about game weapons, back and forth, back and forth) saying 'wait', 'in a minute', 'I can't', 'I'm too tired', 'go away, go away, go away' pretending to be a rock, so he can't move, or a soldier arguing about why he doesn't need to, shouldn't bother negotiating if he gets something he'll do it, or promising if he just does something else first, but even if he gets his way, he never does the original thing making loud vocal noises, squeaking, walking away, going to another room, going to his bed, hiding going as if to do it, but ending up somewhere else doing someth...
Read more