In May 2018, the PDA Society published their Being Misunderstood report which highlighted Pathological Demand Avoidance (PDA) experiences across the UK. Parents, professionals, adults with PDA and family members contributed to the online survey which formed the report and the results demonstrated that people with a PDA profile of autism are especially poorly understood and supported by current services. The need for these people to be identified and needs-based accommodations made, is high. This is particularly true for school-age children when you consider that 70% of individuals with a PDA profile don’t thrive in the school environment.
So why is PDA being recognised by some professionals and not others? Why have some people never heard of PDA in the first place?
Dr Gloria Dura-Vila is a Consultant Child and Adolescent Psychiatrist and Medical Lead for ASD in Surrey and Borders NHS Trust. She also works in private practice and offers consultation to schools. Her long-held passion to communicate in the best way what having ASD means compelled her to write the bestselling My Autism Book: A Child’s Guide to their Autism Spectrum Diagnosis. Here, she talks amongst other things about why PDA should be recognised by professionals and why PDA friendly strategies should be included in the child’s management plan.
Pathological Demand Avoidance (PDA), or Extreme Demand Avoidance, is a set of strengths and difficulties inside Autism Spectrum Disorder (ASD). People with PDA symptoms are characterised, amongst other symptoms, by the avoidance of everyday demands, rooted in an anxiety-based need to be in control.
A difficult journey for parents
I often witness in my clinical practice how the parents of children with PDA symptoms bravely undertake the journey to understand their child’s difficulties and to get the best support for them.
Many of them have told me that descriptions of PDA ’made perfect sense’ and talked about a ’penny dropping’ moment as the descriptions captured the challenges they were facing as a parent. It saddened me to learn that their paths have frequently been plagued with misunderstanding, controversy, ignorance, disbelief and even judgement from professionals. I was particularly distressed to hear that some of them were refused help by services, being told that ’PDA is not a thing’ as it is not included in the diagnostic classifications. It is imperative for professionals to truly listen to parents and to consider them as equal members of the team assessing and managing the child.
Why is it important to identify and describe PDA in a young person as part of the ASD diagnosis?
Whatever name we give to children’s difficulties, it must never reduce their complexity to a meaningless label; it should never put them into a box. On the contrary, it should help them and the adults caring for them to understand their set of talents and difficulties, and to find ways to foster the former and cope with the latter. No two people on the Autism Spectrum with PDA are the same: the ASD assessment has to identify how ASD affects your child and the identification of PDA by a multidisciplinary team of professionals is part of this process. PDA is dimensional and affects people on the autism spectrum in different ways, so there is a need to describe which bits apply to your child and which don’t.
The report following the assessment needs to reflect your child’s unique profile to guide a ‘needs-led’ programme of strategies that is shared by everyone involved in their care.
Identifying PDA is crucial as I’ve been told on many occasions by parents and teachers that the approaches used with children with a more typical presentation of autism often don’t work and can be counterproductive with those with PDA. Conversely, I have been told on many occasions how the application of ‘PDA friendly strategies’ was, quoting a father I worked with, ‘life transforming’ for his daughter and the whole family.
Moreover, developing a detailed description of your child’s ASD will help them develop self-awareness, and understanding their PDA symptoms is part of this.
Why should you help your child understand their PDA?
The young people with PDA I work with often ask me what PDA means, how it relates to their ASD diagnosis and, more importantly, how to make the best of their strengths and find ways to cope with and overcome their difficulties. I also get frequent requests from parents to help them explain PDA to their child.
Making better sense of themselves can help your child improve their self-esteem as they realise they are not alone in their struggles and helping them become more aware of their strengths will lead to forging a more positive conception of themselves. Some of my patients with PDA noticed that they didn’t fit in with their peers with ASD when, for example, their placements in specialist schools weren’t successful.
Embarking on the process of assisting your child to develop their self-awareness is incredibly worthwhile. It will guide their search for better ways to manage their difficulties and problematic behaviours, and, in the long term, it will help them to make the right choices for the future.
Tips to talk to your child about their PDA
Let me share some strategies I’ve learned working with the young people I serve, to assist you in helping your child gain more self-awareness:
- Make them feel in control while learning about their PDA and try hard to reduce their anxiety. This is a little mantra to put them in the driving seat:
– You are the best teacher about YOU.
– You are the expert on YOU.
– Everyone who cares for you are really looking forward to learning from YOU about YOU.
- Carefully choose when to approach this topic and don’t rush the communication. This is something to revisit many times.
- Their skills such as imagination, role-playing, and drawing are your allies.
- Adopt a flexible, creative, indirect style.
How to explain PDA to your child
Here are some messages I convey to the young people I work with:
- It’s not useful to compare people’s brains: brains are diverse and equally valuable.
- Our brains will be with us for life: it’s wise to learn how to make the most of them. A good way to do this is to learn about yourself.
- You share the main characteristics of ASD and the main characteristics of PDA.
- PDA is not your fault. It’s not anyone’s fault.
- Your PDA does not define you: it is a part of who you are but not all!
Gloria’s new book Me and My PDA: A Guide to Pathological Demand Avoidance for Young People is out now and is a good starting point for having these conversations with your child. For more information and how to contact Gloria see her websites: gloriaduravila.weebly.com and psychiatryinlondon.co.uk
Before you go, please also check out this video created for PDA Day 2019 to help raise awareness of how the PDA profile of autism can present, combining experiences kindly shared by children, young people and adults.