I’ve noticed there is a lot of information on social media about Pathological Demand Avoidance, now recognised as part of the Autism Spectrum (by The National Autistic Society).
It’s a condition I’ve suspected for a long time now that my son has, although he has never had a diagnosis. For me it has been like raising a child who is clever and articulate yet so avoidant and anxious and the two just didn’t seem to go together.
How could my funny clever boisterous questioning little boy have an aversion to cleaning his teeth or eating certain foods or be so scared to travel in my car, that he needed to wear a helmet? He would constantly check things out, that it felt like we were being tested as parents the whole time. Were we good enough for the job we had been given? Could we be trusted? If we didn’t have the answers, it felt like we'd failed.
Traditional parenting was a no go – we were constantly looking for ideas that worked from parenting courses, occupational therapy, Educational Psychologists, a change of school (school was a disaster), consequences, rewards – you name it, we tried it.
As he got older we heard about Pathological Demand Avoidance and realised that he displayed most of the traits. I then went on to try to educate myself about the condition as much as possible but there was little information available. It was very frustrating.
- Also read: PDA Awareness Day
I then heard about the very lovely Laura Kerbey, previously a head of a special school who was running an organisation called Positive autism support and training. I had a good look at her website and really liked what I saw. We got chatting and I mentioned I worked as a youth counsellor and we went from there. Laura told me about some accredited PDA training that she runs and I was keen to attend. It is, I believe, the only accredited course currently running in the UK and a couple of weeks ago I attended her course. It was a brilliant course. Not only is the course highly informative, but Laura was a great trainer too, knowledgeable, friendly and approachable – I would recommend her courses to anyone.
Laura has given me permission to share the contents of the course as she wants as many people to be PDA aware as possible.
- Also read: PDA- what actually changes now?
Pathological Demand Avoidance learning outcomes
The course learning outcomes were to:
- Understand the meaning of Pathological Demand Avoidance (PDA).
- Understand the impact PDA has on a child, teenager or young adult and how they might be supported.
- Understand the key principles of positive behaviour management when working with children, teenagers and young adults with PDA.
- Understand the effects that PDA has on learning and how to reduce the impact of this.
By the time I'd finished the course, I had learned all of the above and more.
What became apparent was that although Pathological Demand Avoidance is becoming recognised with health professional and SEN departments, it isn’t diagnosed officially by many professionals because it is not in either of the diagnostic manuals (DSMV, ICD 10) that our national health care system follows. Therefore, ‘PDA-like’ symptoms can be noted, but not as a condition within itself as yet. And because it can’t be diagnosed as a condition, then it is often not recognised by local authorities as a special educational need. A private diagnosis can be obtained but this is not always helpful if the local authority won’t accept the condition. You may find you have spent money needlessly so check first.
However just because the local authority doesn’t accept PDA it doesn’t mean that there aren’t many fab teachers, teaching staff, care workers and parents and carers who recognise the complex condition and want to help the young people they look after. So thank goodness for courses like Laura’s.
To find out more about the symptoms of PDA click here to be redirected to the PDA society website.
What became apparent was how we learnt that avoidance came in many guises. Some, such as making excuses, manipulating and changing the subject were very covert. We also learnt that demands could be very subtle to us, but hugely disabling to our young people. The need for control was so powerful, it became the disabling factor in many young peoples lives and often they didn’t want to act or feel the way they were feeling.
The 'demand' in Pathological Demand Avoidance
Demands can be seen in many ways – direct, subtle, silent and self imposed
- Direct demand – Brush your hair, clean your teeth
- Subtle demand – We need to pop to the shops, We need to leave for school now
- Silent – Responding to a question, Going on a family day out
- Self imposed – Wanting to do something like have a bath or eating meal but not being able to start or stop the activity
As we know demands are avoided in many ways:
But why do they do it?
It’s all about anxiety. Extreme anxiety, the type of anxiety that is all consuming, which to us can sometimes seem quite confusing.
This anxiety can be brought on by social and communication difficulties, fear of failure, loss of control, new environment, difficulties at home (such as a loss, a trauma, relationship breakdown, difference in parenting styles) a perceived injustice, school, sensory difficulties.
So if I suspect PDA, how can I help?
Trial and error will probably feature here – Once you realise something does or doesn’t work, then be aware of it and remember – keep a log if you need to. It may help in the long run.
- Reduce the pressures – allow more time, pick your battles, be specific if you need to – I remember saying to my son ‘come on hurry up, we don’t have much time’ Well he couldn’t process this – what did ‘not much time mean?’ He had a point - So I amended this to ‘I need to leave in 15 minutes and it would be great if you were ready’ – This worked on that occasion and although it was a bit of a mouthful – It probably saved ma an argument and being late for work and school.
- Praise indirectly – and explain what you are praising – Third party praise can be good for children with PDA – i.e they overhear you sharing good things about them to another adult.
- Offer a choice you are in control of – Do you want to put your shoes or your coat on first, Are you having a bath or a shower this evening, Shall I run it or will you. That sort of thing – It takes practice but does work.
- Don’t take it personally – You might feel anxious, hurt, embarrassed, upset or frightened by your child’s behaviour but it isn’t personal, if your are feeling like that, imagine what it must be like for them.
YouTube has a wealth of information about PDA – As always be careful of what information you source but this one on meltdowns has some really useful information.
Other ways we learned that help are recognising the signs of anxiety by become a detective and looking for cues. Also, remember to be kind to yourself while you learn; It will take time.
Jane Sherwin, author of Pathological_Demand Avoidance Syndrome-My Daughter is Not Naughty
and mother to a daughter with PDA, suggest the following as effective when managing children, young people and adults with PDA:
- Speak to me as an equal
- Empathise with me
- Understand that I don’t mean to behave like this
- Take my lead when building relationships and conversations
- Recognise my anxiety
Remember, sanctions rarely work and can worsen an already volatile situation.
Dealing with a crisis
When dealing with a crisis, remember these may be help (but not all at the same time)
- Keep calm
- Don’t shout
- Be flexible
- Use empathy
- Don’t threaten or sanction
- Use humour
- Stay safe
- Don’t personalise
After a meltdown has occurred and you are able to reflect and process (give yourself time and space to do this) Put your detective cap back on and ask yourself or discuss with a partner:
- What were the triggers?
- What was the observed behaviour?
- How did we deal with it?
- What was effective?
- What would you do next time?
This might help you catch a situation before it develops into a full on meltdown which will help both you and your young person with Pathological Demand Avoidance.
Remember that that PDA is a complex anxiety/Autism Spectrum Condition and that you are doing the best you can. Parenting is turned on its head with this condition and you have to learn things you never thought you would have to and deal with situations you never thought would arise. Remind yourself that you're doing great and hopefully this post will give you more support to continue doing it.