I’ve often written about the matter-of-fact process of discovering that my twins were autistic – what we did next, how we did it and the support services we were lucky enough to access.
But what I have not yet written about, because, quite frankly, it makes me uncomfortable in a way I don’t often like to bring to the surface, is the process of discovery from my own visceral perspective as a parent. I’ve always had a great poker face, even through adversity.
When other parents of newly diagnosed autistic children have come to me for solace or solidarity, I’ve always reassured them that it is not a death sentence, that they should embrace their child’s neurodivergence, that they are still the same child as before and that they can lead an even more magnificent life than their neurotypical counterparts (and this I believe with every fibre of my being).
But really, I remember that kick in the stomach and the lump in my throat when being told my children were autistic, and I cannot even bring myself to say some of the words the doctor used in his diagnosis report. They should never be used to describe anyone, ever, and it took a long time for those words to stop haunting me.
And although I was aware of my children’s autism before the doctors would acknowledge it (I was dismissed several times as an ‘anxious parent’ before I got fed up, went private and got answers), it still winded and wounded me to hear it confirmed and said out loud. It was as if time stood still, and I wondered whether that feeling would ever really fade or even whether I could erase it from memory completely. The truth is that I will always remember that moment and the unbearable uncertainty that followed. Some days the worry was suffocating.
But it passed.
I was familiar with autism. I worked as a teaching assistant in an autism specialist school, then qualified as a teacher and taught for 12 years in inner London comprehensive schools with high numbers of autistic, neurodivergent and SEND students (just like in society in general – 1 in 28 is autistic, though the figure is less for those actually diagnosed), and in both mine and my husband’s families we have diagnosed (and undiagnosed) autistic family members.
We are almost four years on now, and we fully encompass, embrace and truly enjoy our new ‘normal’ – although normal is not a word in our vocabulary. For us, normal means average, and that’s not something we aspire to be.
In fact, as with a lot of parents of autistic children, 85% are neurodivergent themselves, and the penny slowly drops when they see themselves in their child’s behaviours, traits and responses – it can be like looking at a reflection of yourself – before they realise that their children may not be the only neurodivergent people in the family home, but that’s for another day. The apples come from the tree, after all.
My message to all parents newly discovering that your child is autistic: please accept it as fast as you can – for your own sake as much as for your child’s – learn as much as you can to empower yourself and lessen the ‘fear’ of the unknown. Throw yourself into the beautiful and enigmatic world of neurodiversity, follow your child’s lead and don’t hold them to neurotypical standards or believe for a second that that’s the bar for which to strive – that would only be holding them back. It’s even possible that autism, by outdated standards, isn’t what you were led to believe it was. Embrace and nurture your child’s quirks, and support them through their challenges.
But most of all, love and accept them for who they are, not for whom you thought they would be. They are not less; in fact, they are so much more, and they will surprise and amaze you every. single. day.
And throw the rule book away – the quicker, the better.
