Jo Richardson is a parent advocate and author from the UK. Richardson blogs at Different Not Deficient on a variety of different topics related to parenting, mental health, autism, and Pathological Demand Avoidance (PDA). This week she shared how PDA affects her daily life and how others can recognize and support others with PDA tendencies.
You live in a Neurodivergent household (you, your husband, and son are all Autistic). What was the order of your diagnoses and how has your life changed as a family unit as a result?
I was diagnosed first, but I began my journey to diagnosis after my son has begun his – his was NHS and mine was Private, so mine went through quicker than his. My husband has never felt the need to get officially diagnosed, but is self-diagnosed after thorough research on both autism and PDA.
Getting diagnosed completely changed my life and remains one of the best things to ever happen to me. After 38 years of believing that I was damaged, inferior, and an alien from a different planet, my life started to make sense. It led me to the Autistic and PDA communities, and I have been able to start dealing with a lifetime of trauma and start repairing my self-esteem and confidence. I finally understand myself and celebrate my differences rather than see myself as being ‘lesser than’. It has also greatly helped with understanding my son, with his diagnoses (ASD-PDA, ADHD, GDD)\ and we have a fantastic and close relationship because we understand each other, and I don’t put pressure or expectations on him to behave or develop like NT children.
How did you end up realizing your PDA diagnosis/identity? Can you describe how PDA affects your daily life?
I first realised that both my son and I are PDA when I was researching all aspects of Autism (special interest) and found PDA, and it was like everything clicked together at once. I have had consultations with PDA experts who have validated my belief that we are PDA. PDA affects my daily life in that demands come in all different forms. I obsessively buy craft materials, but because I have bought them to use, my brain sees that as a demand, and I have never, and will likely never use any of it. There are days where I can be incredibly thirsty, have a glass of water within arms reach, yet can’t make myself drink it, because the fact that my body is craving liquid; my brain sees it as a demand and won’t comply. PDA isn’t just avoiding demands though. It is a deep seeded need for control and autonomy, and if someone tries to take away control from me, then I end up in either fight or flight, or meltdown. I control everything in our house – from housework, to paying bills, to food – everything. I would LOVE to be able to let my husband take over some things, but I physically cannot make myself. I need to have the freedom to be able to do what I want and struggle when someone gets in the way of that.
The difficulty we have with 2 PDAers in the house, is that we often clash when it comes to controlling a situation. Because neither of us are capable of relinquishing control, my husband usually has to intervene, and I usually get sent upstairs with my laptop whilst my husband takes over looking after our son. But, when both my son and I are doing something that we both want to be doing, it is the most fun and enjoyable experience! Harry Thompson-PDA Extraordinaire refers to it as the ‘PDA Flow,’ and his definition is spot on!
Are there ways neurotypicals can recognize PDA in others (either children or adult peers) and adjust to adapt to their needs?
Yes there is. When you truly understand the PDA neurotype, it is quite easy to spot and adapt to. If a child or adult is incapable of relinquishing control, or cannot comply with being asked to do something, or even doing something that they want to do; if they have a rich fantasy life and may pretend to be other people or an animal when they are stressed or trying to avoid a demand, then it is worth looking at PDA.
The best way to adapt to their needs is to follow their lead. PDAers know their minds and will direct you where they want to go or what they want to do. Reduce all demands on them. It can be almost physically painful when demands are put on us, especially if the demand is repeated a lot when we don’t comply. Accept them for who they are.
Can you comment on the inclusivity or lack thereof in your past educational experience?
I remember as a child feeling like an intruder at school; not being able to relate to my peers and having no support.
Looking back at all of my school reports, it was SO clear that I was ADHD, yet no support or help was ever offered to me. I was always kept in the lower level classes. My senior school tried to stop me from taking half of my GCSEs because I didn’t do well in exams and it would bring their grade average down (it was a grammar school). I was also advised by my college not to take A Levels as I didn’t do well in exams. I fought against both and did all my GCSEs and 3 A levels. If I had had the right support, I would have achieved much higher grades than I did. I was always treated like I was a naughty, disruptive, dumb kid.
What are some important ways parents and/or teachers can help Autistic children grow to develop confidence in their identity?
Listen to them. Help them to access the Autistic community – especially their Autistic peers. It is so important for Autistic children to spend time with other Autistic kids as it will help them to realise that they are not the only person who feels/thinks/sees the world the way that they do. Don’t try to change them to be more like NT kids. The more you do that, the lower their confidence will be as they will see this as you telling them that they’re not good enough to be loved or accepted as they are.
Help them to learn about Autistics – not the clinical model, but the social one. Adapt the way you do things so that it helps to support the child, rather than fitting around what you want to do.
Fight for them. Show them that you are on their side and that they are loved and accepted for who they are.
On your ‘About’ page, you say, “Like a phoenix from the flame, I have risen from the ashes of who I used to be and am trying to allow my true and glorious autistic self out of the shadows.” Who did you used to be and who are you now?
I used to be very self destructive, made bad decisions based on what other people wanted me to do, as pleasing them was the most important thing as my needs meant nothing as I was worth nothing. I masked all the time and have had a lifetime of mental health issues. I hated myself and didn’t feel like I belonged anywhere. I never strived to do anything, take risks, or opportunities, as I believed I would just fail.
Now, after getting diagnosed and learning who I am and that I am not worthless or inferior, I mask a lot less, I grab opportunities whenever they appear, I am a passionate advocate in both the Autistic and PDA communities, I am a published writer, I was nominated for a National Diversity Award, and I am now part of my local SEND Parent and Carer Forum and have just finished writing a book for local parents and carers on all aspects of the ND journey; what will happen through assessment and diagnosis, EHCPs, local groups and services, recommended websites, Facebook groups, books, etc. It’s the book that I wish I had at the beginning of our journey with my son.
I believe in myself, my confidence has grown, as well as my self-esteem, and I am now proud of who I am and have found my place in the world. It is like I have shed the damaged and trauma ridden skin of my past and found the strong, determined, and passionate warrior underneath.