Blog#17: The elephant in the room

This year, I’ve been struggling with my own ‘elephant in the room’. My elephant is that we have no official PDA diagnosis for JJ.

Ever since our PDA lightbulb moment in the spring of 2019, I’ve devoted a huge part of my life to discovering everything I can about this little-known profile of the autism spectrum. I’ve read books, I’ve searched online, contacted the PDA society and other charity organisations, joined Facebook groups, chatted to other parents and found some remarkable blogs about PDA – all of which have a profound impact upon my consciousness, my parenting and consequently our family life as a whole.

Running parallel to this has been what you might call our ‘SEND journey’: the practical stuff I’ve had to quickly absorb, make sense of and navigate in order to obtain an EHCP for JJ, then a specialist placement. When that broke down, I found myself dealing with the mental health and social care services in order to secure advice and support for JJ, and a journey towards an end goal of – hopefully – EOTAS (education otherwise than at school).

At the same time, I’ve found a groove with writing this blog and some other stuff, which has not only provided me with some much-needed sense of personal achievement, but also the great privilege and joy of connecting with other bloggers, parents and carers of PDAers, neurotypical and neurodivergent people. These last couple of years, throughout one of the most tumultuous times in recent history, have been terrifying at times. Things that have happened to our family have been profoundly moving, and I’ve grown as a parent and as a human being in ways I couldn’t have imagined before.

I feel very passionately about the whole ridiculous issue of PDA diagnoses: the lack of agreement and understanding from the NICE, the lack of parity between individual clinical consulting groups in different parts of the UK leading to the postcode-lottery of ‘PDA profile’ diagnoses, and I perhaps feel most indignant, frustrated and angry about the paediatrician who wouldn’t even discuss PDA with me during JJ’s autism assessment and who refused to take my personal research and lived-experience of parenting a child who has a pervasive demand for autonomy into account at all.

But the truth is, as JJ doesn’t have a PDA diagnosis, I often feel like a massive fraud. Every day as I give advice to other parents/carers, as I write about PDA, as I connect with other bloggers, as I help JJ, as I console other parents, as I problem-solve for JJ in an ableist world, as I learn more about the PDA brain, as I continue to study neurodivergence…there’s always a voice at the back of my head that reminds me that officially, JJ is not a PDAer. By the time I knew we needed to go privately in order for JJ to be properly assessed and understood, it was too late. He won’t engage with professionals at the moment. So, should I really be in this space at all?

I didn’t get an invitation to be here, and nobody asked for my opinion at first. But in the early, dark days of 2019 I felt a fear and desperation about my child that gripped me, and threatened to paralyse me altogether. I’ve never felt so utterly powerless and alone as I did then, watching my beautiful boy succumb to debilitating anxiety, uncontrollable meltdowns and live in a constant state of fear that gradually would prevent him from participating in not only school – but the world. So, my choice was pretty clear to me. I could literally sink, or swim. There was no in-between. Sinking would have meant that the anxiety had got me too. It would have won, and I would not be able to be there for JJ. The dark corridor of fear we were heading down would swallow us both up, and we may never find our way out. So, like so many parents and carers after asking for help from professionals, and receiving absolutely nothing in return, the choice was made for me. And I decided to tool up: I got myself educated, talked to other parents, listened to autistic voices and acted upon their advice. I threw away the invisible parenting manual I’d inherited from my parents (which they in turn inherited from their parents) and started to write my own, based on all the advice and lived-experience of others. And as far as I know, I’m neurotypical, so I always have to be aware that that’s the lens I see life through.

So why am I telling you that I feel like an imposter? It’s not for validation – you don’t owe me that. Validation needs to come from within, and I’m working on that all the time. But I want you to know that sometimes life isn’t as tied-up and neat as you want it to be. Sometimes you’ve got to stick your head above the parapet and say ‘hang on, I’m going to do things differently – I might fail, I might be criticised, and I might be wrong sometimes – but I have to try’. Be vulnerable, be open to criticism but ultimately be true to your gut instincts. And if your experience touches people along the way, and by making connections with others we can help each other just a tiny bit – then as far as I’m concerned, it’s all worth it.

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