My PDA Journey: from Awkwardness and Anxiety to Authenticity and Advocacy

Written by Lisa*

I recently walked up a long country road, in the dark, jumping at the sound of cane toads, worrying about snakes on the road and spiderwebs in my face – because my husband asked if I wanted to be picked up.

I realised this was completely irrational, but I couldn’t say yes. Ridiculous!! But that is internalised PDA for you. I have a huge need for personal control and autonomy which has followed me, all my life.

At school I was that quiet studious girl who kept to herself and didn’t cause any problems. I was a perfectionist and loved learning. I was bright, but not super smart, so I constantly did mock exams and wrote practice essays which I delivered to my poor teachers on the weekend to mark.

At university, I struggled at first. It was a massive change. My structure was gone, the expectations were different and I was out of my comfort zone. Eventually I got into the flow and went on to complete the first of my postgraduate degrees, and eventually my PhD in policy.

One constant for me throughout this was my social awkwardness. I made friends, but really connected with very few – but when I did connect, it was effortless and I could talk for hours.

Socially, I have always watched people, studying their mannerisms, and the ease with which they interact, trying to ‘learn’ how to better socialise. Small talk was excruciating. One my close friends said one day, “You’re a weird fish”, but I had no idea why.

When I was first faced with having to do a lot of public speaking in my job as clinical dietitian, I was terrified.

As my career developed, however, I learnt how to create a bubble of safety in my mind and was able to stand up in front of hundreds at conferences. Despite always quickly moving to leadership positions, and achieving academically, I still felt like an imposter. Trying to manage constant self-doubt and high anxiety, while appearing confident, meant I internalised my stress and didn’t ask for help when I needed it. I still can’t bear the thought of others knowing about my vulnerabilities, and I almost never drop my mask, even with those closest to me.

I had never planned to have children and was quite ignorant of what to expect. The move to motherhood coincided with moving countries and a huge career change that was not planned. I loved being a mother and adore my little boy, but I did struggle … at times, I struggled a lot.

When my little boy went to kindergarten, we started to get calls to discuss his progress. Concerns were raised about how he interacted with others and it was suggested we seek professional advice. While we were sceptical, we duly booked in to see the GP and a referral was made to see a psychologist. When he was formally identified at aged five as Autistic and having ADHD, we were shocked. My knowledge of neurodivergence was extremely limited and I didn’t see how it related to my son.

From that point on, I embarked on a journey to learn as much as I could. Supporting my wonderful little boy has become my greatest passion. Whilst most of the advice I received was medically focused, I was fortunate enough to be introduced to the work of Ross Greene very early on by our paediatrician, when he mentioned that he would be attending his upcoming workshop. I registered too. Learning how children with difficulties at school were treated was very confronting and, for the first time in my life, I lost control and ugly cried in public! Greene’s approach, however, sat very comfortably with me and felt like an affirmation of what I was doing already, which was a great comfort.

School was the next, and so far, the biggest hurdle. My little boy initially loved it, but over the years this excitement dimmed until school avoidance began in grade 3. In prep, his work was already being seen as an issue of poor effort versus lagging skills.

He didn’t understand the rules of conformity and unquestioning compliance, and he was regularly made to sit on the chair of shame outside the classroom. His spirit started to be squashed and he began to disengage. I found this horrifying.

I didn’t know at the time that I was being introduced to ABA, but I was very sure the approach being taken was wrong and damaging. So began the first of many meetings with principals, teachers and inclusion officers.

Through this process I have identified his PDA profile and his dysgraphia and have provided information to support the teachers. One teacher flippantly said at a meeting, “Wouldn’t all the kids like extra support!”. That has stuck in my mind. There was such a lack of understanding or empathy for his struggles. My advocacy was seen as criticism and, rather than working with us, the teachers stopped communicating in any meaningful way. The lighthouse people for my son have largely been some brilliant support staff. Five years on, they are finally starting to show signs that they may change their approach, and that his struggles are ‘can’t’ not ‘won’t’.

I have continued to study and learn but I have done this through neurodivergent and neuroaffirming professionals, and those with lived experience.

I have learnt to sit with my own discomfort, and relentlessly and assertively advocate for my child – something I was never able to do for myself.

I have since been formally identified as Autistic at the age of 50, and I’m pretty sure I have a PDA profile as well.

Thanks to the insights of many wonderful Autistic people, I can now make sense of the many struggles I have had to overcome. I am finally beginning to see that I have actually achieved quite a lot. I have been successful, despite having to navigate a world that isn’t designed for minds like mine. I’m giving myself a little slack.

I now see being Autistic and PDA as the reason I have been able to achieve so many things. My high anxiety has definitely held me back in some parts of my life, but my need for autonomy, and self-directed drive to learn gives me great capacity to take on multiple things at once, and is the reason I can push when my mind is telling me it doesn’t want to.

I am now embarking on my Masters in Autism. I want to use my passion and skills to help my son achieve success in learning and life. He has a beautiful mind and deserves to be, unapologetically, his authentic self, not spend a life masking as I have done. And I hope to influence a change of system. So far it has been a tough journey but the rewards are high. I have a wonderful connection with my son. He is my happy.

* The author has chosen not to publish under their full name. Many of our writers only feel safe disclosing their Autistic identity to a select few due to the enduring stigma and prejudice faced by Autistic individuals. We hope by sharing their stories we can help dismantle this stigma and, one day, achieve true Autism acceptance.