On Tuesday evening, we had a telephone appointment with a Clinician who told us that after discussion at the Umbrella Pathway panel, our son has been diagnosed with an Autism Spectrum Disorder. He’d been discussed two weeks ago, and we had a very bizarre twelve day wait until the call letting us know the outcome. During that time, I had no idea how I felt about it all. and let me tell you, I don’t think I’ve ever quite felt such knotted, twisty-turning, conflicting emotions quite like I did in that window of limbo. Despite knowing that…
Ultimately, it didn’t matter
Ultimately, it didn’t matter whether Pickle was diagnosed or not. I’m firmly in the camp that a diagnosis does not change our son. Of course it doesn’t. He is who he is, he behaves the way he behaves and putting a name to those characteristics doesn’t change them or make them any easier to navigate. And I say that in all sincerity. Naturally, whether he is autistic or not does not change the way I feel about my child, or indeed change my hopes and aspirations for him in the future (mainly because my number one hope for him is be happy… and although I can appreciate how this might be trickier compared to his neurotypical peers, I also think we have the tools and capacity to help him navigate life until such a time that he can do this by himself).
But it does change a lot the way I feel about myself as a parent. Let me explain…
The hardest thing to deal with over the last fifteen months or so (and let’s face it, longer than that really…) has been having to constantly second guess myself. I never imagined I would parent the way that I do. It’s a method of parenting that has evolved and been born out of a whole load of trial and error. I’m the parent I am because of the child that Pickle is. He needs extra help to navigate the world and to process social situations, and that requires a lot of extra patience, a lot of support. Despite the popular opinion from a few select friends and relatives that I am ‘soft’ or ‘don’t know how to discipline my child’, I have successfully taught him right from wrong. I model the behaviour I want to see in him, and that particularly involves staying calm when things aren’t going the way you had planned. Above all, I have always recognised and appreciated that his most challenging behaviours are in fact symptoms (the cause of which we now know is autism) and my first priority always has to be keeping him safe.
There’s a whole blogpost of opinions I could write on dealing with autistic meltdowns and how a meltdown is not the right time to ‘discipline’ or for doling out punitive measures but I’ll save that for another day…
Despite knowing rationally that comments or opinions voiced by others are the result of them having only witnessed a small snapshot of time, a mere fragment of my parenting upon which lots of big assumptions have been made, I have let them get to me. I have questioned myself. I have researched. I have cried a million tears in frustration and confusion, the kind of big hot tears that leave you with puffed eyes, a heavy heart and ultimately an enormous, soul-crushing feeling of emptiness.
At those times, even when I have dissected and over-analysed all of my parenting choices and the tactics I employ inside and out, I always come back to the same conclusion: I am doing the best job that I can, within the confines of my knowledge and I am happy with those decisions and the justifications behind them. I am comfortable with the impact of my parenting, both in the short and long term. I believe I am doing the right thing for my child and my family. It feels right. It feels natural. And although those decisions are conscious ones, they also feel instinctive, on a very deep and primal level.
And so, the hot tears of confusion and frustration do not come from my own uncertainty. They come from a place of such personal sadness and anger. And the resultant paranoia and feelings of being on edge or judged in the very environments where I should be feeling most supported are difficult emotions to carry. It’s a difficult feeling to explain but it’s one that has forced me to keep my distance from those I should have been running towards for help, for encouragement and for kindness.
This diagnosis and the incredible explanations that came with it validated all of those feelings. They took away that tiny element of self-doubt and confirmed that my instincts were on the right track. And in that sense, the diagnosis came as a relief.
We have a lot to learn. And I’ve started by ordering the book recommended by the Clinician: The Explosive Child*. I don’t think life as an autism parent will be easy, just as life isn’t easy for Pickle, but it is our normal. It always has been. And I will continue to do the best I can for my child as we navigate it all together. For those who are reading this that are at the start of a diagnostic journey: stay strong. Be kind to yourself and kind to your child. Seek help and the expertise of others whilst always knowing that you will know your child best. Focusing on the areas or skills your child struggles with is hard, mentally… but also know and recognise the beautiful strengths your child has too. This journey is not about whittling down your child to fit the neurotypical mould (although, we all know that would be much easier for teachers and the way our education system works), but identifying the parts of that mould that can be reshaped and tweaked to ensure an inclusive fit.
You will need your friends. It’s an emotional road – one that will never truly reach a ‘destination’ or come to an end, and although the route may not be clear at times, the view is pretty spectacular, and your child will be the most wonderful of guides.