As I grew up I never understood who I was. I had frequent shutdowns, was highly anxious and just couldn't cope with what others viewed as simple everyday life. I was eventually diagnosed as autistic and my life started to make sense. After initially being in complete denial, education and my own research led me to a self awakening where I began to understand the real Hannah. However it still never fitted perfectly. Not that any label can, especially one like autism where every person is different and unique but there still seemed to be something missing. Through my diagnosis I started reaching out and joining groups with other autistic people. I followed them on social media, watched programmes about them and volunteered with charities with other autistics. And while other autistics would speak about feeling completely at ease, finally at home- alongside their own people! I still always felt like an outsider. Still on the outside of the circle, just not quite fitting in. It's a weird feeling and not one you can probably understand if you haven't been in that position. It wasn't until I went under the specialist autism team in my area last year that suddenly things started to become clearer.
"I think you have/are PDA". To be honest I probably laughed. From what I was aware of Pathological Demand Avoidance that meant the child at school who said no to everything and lobbed chairs at everyone. The psychologist began to explain his reasoning and it was the closet I have ever gotten to a true awakening!! I remember ringing my mum when she finished work and her laughing and immediately dismissing idea. After initially being annoyed with her dismissal I sent her the small amount of research I had done since that mornings appointment. When she got in, she came to my room and just said THIS IS YOU! Along with the suspected mix of ADHD which I remain on the 3 year waiting list for! It was a bizarre feeling as I thought I understood myself knowing I was autistic. There is still debate whether PDA is a separate diagnosis, a profile of the ASC spectrum or just a lense to look through. Regardless of what it may clinically look like; for me I view it as a lense into my way of living. It's the telescope from my brain to the outside world. The explanation of the high anxiety I feel, the avoidance of demands and the use of social strategies as part of this avoidance. It's always confused people as to why my social ability seemed relatively 'normal' on the surface, it has always lacked substance underneath but I have very often 'passed'. This is classic PDA. My constant escapism into fantasy, my phenomenal imaginiation and creativity baffling many. The extreme mood swings and emotions which led me into mental health services is perfectly explained by this profile and my constant need for control.
I believe it went undetected for so long as normal approaches to parenting don't work but luckily for me my mum has always done PANDA parenting (look on the PDA societies website for more information). It's unconventional and she did it without even realising. Of course as with everything nothing is perfect and no person is, so we can look back and see so many traits but having this trust and relationship with my mum really has been a life saver. Again just like autism, but even more so in my opinion, PDA is even more misunderstood. It doesn't mean you have to let a person do whatever they want (this is the classic response I have heard so many times and it is fundamentally so not true). It also doesn't mean the person is just oppositional and hard work or selfish and attention seeking. We don't just want everything our own way or on our own terms. PDA comes with a very high level of anxiety. Demands to us are constant and overwhelming. They can be implied or explicit, they can be big or small. They come from others and ourselves. They are everywhere. They come at you, your anxiety heightened and you feel trapped, avoiding it isn't a choice but a necessity. My bucket gets so full and often when I get into my safe space I explode or collapse. The lack of control causes your world to come down around you, the panic rises and my body temperature increases. My rational brain turns off and my emotional brain takes over. Withdrawing into my own fantasy world, distraction techniques or flight mode is activated. At that peak point the answer has always been to just run.
Just like autism PDA is multi dimensional and is definitely not a one size fits all. Often people separate PDAers into two groups - extroverts and introverts (internal pda). For me I am definitely a mixture of both. I can be an in your face obvious PDA but I can also mask my difficulties and use avoidance more discreetly. I think this depends on other factors in my life and how well I am coping.
PDA is definitely not all negative. For me I have many a positives which accompany my neurodiversity. I am determined, articulate and musical. I love performing, creating, writing and advocacy. I'm super imaginative, very empathetic and have a very good ability to read other people's emotions. Justice-orientated and always on the side of the oppressed. I am fiercely loyal to those I love and care about and I never give up, I may be stubborn but this can be harnessed into strength and power. I'm also super caring and sensitive. Something else I think others would say about me is I am very honest- you know you'll get the truth if you ask! They would probably say I'm quite witty and funny too ;).
Demand avoidance can often seem very irrational, counterproductive and some cases even dangerous. But as someone who is, all I ask of you is understanding and support. You will almost certainly not get it, I know I'm hard work and my inability to do basic tasks is frustrating. However learning about PDA, what it means and how to help really can be life changing. Not just for the PDAer like me but our whole family. Once you can understand us, we truly are able to successfully cope with the everyday demands set upon us. There is hope and we have a chance to live very fulfilling and happy lives. And no I have never thrown a chair at anybody- not yet anyway!
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