I find myself occasionally wondering how this thing, Autism Spectrum Condition, entered our lives.
I look at old videos of my children as toddlers and babies, my eldest telling me ‘I’m tidying my books!’, full of determination and focus. Telling their uncle about the green tomato on our balcony that was sad because he wasn’t red. Reading and organising their books with a ferocity and passion. As they were my firstborn. I had nothing to compare them to. Honestly, I just thought they were quirky.
And I wondered when this guest, autism, arrived. Why did it choose us?
But, of course, it didn’t choose us. It is us. It wasn't present in the MMR jab, (get your kids vaccinated, by the way) and it didn't sweep in due to bad parenting, or me drinking one extra glass of wine when pregnant, or me being a 'refrigerator mother' (thanks Leo Kanner and Bruno Bettelheim for this particularly egregious theory, thankfully now consigned to the dustbin of history) or any of the many reasons we torture ourselves with.
Autism was already there. Present in the egg in the embryo in my grandmother, that became me, that became my daughter. It is knitted into our DNA in a tangle of brilliance and difference.
I look now and I realise this is not a guest, it is part of our family. Not visiting, like some crazed interloper, but an essential part of our family and our function. And so I have learned to love it. With any kind of love, there are days when I am frustrated and feel like it’s a mistake. I want to change my mind and revoke the invitation, But, like all love, it fills my heart to bursting when I look at my family and realise what incredible human beings they are.
It is a privilege; resenting it is pointless. It simply is who we are. Accepting ourselves as we truly are, is key to living an authentic life. In 2019 I too was diagnosed autistic, which made a huge amount of sense, and also enabled me to stop blaming myself for what I thought was a lifetime of stupidity, clumsiness, laziness and just generally 'not trying hard enough'.
(Yes, sometimes we wear Panda heads around the house because Pandas are lovely)
Learning to love and accept our children and ourselves for who we are, instead of who we want to be, is the only way we can hope to achieve happiness. Realising that we cannot change our selves or our children, and we shouldn’t want to change them; that they are perfect as they are. It is the world around them that has, as yet, failed to adapt.
I have felt every emotion in the world over the over the past years. I have looked at other parents on the school run, imagining that their lives are better than mine. More ordered, less chaotic. With more space and time and leisure and fun.
And actually, some of that is probably true. And some of it isn’t. Because we all have our ‘stuff’. Some more than others, but we all experience guilt, bereavement, sick relatives that we care for and worry about, ill children, disabled children, caring responsibilities that drive us into the ground with exhaustion behind closed doors. But we all put on our game faces, slap on the lipstick and soldier on. And so, we can appear to be coping, appear carefree even, to other people.
But here’s the thing. All of our children have issues. All of us have issues. Every single one, And if they haven’t emerged now, they will later. Because the only sure things in life are death and taxes. Oh yes, and our kids shouting and hitting each other, sneaking drinks and getting drunk, getting pregnant, choosing friends that make your toes curl and other friends that save their lives.
They’ll have secrets and successes and make you feel as though you’ve had three heart attacks in two minutes. Because parenting is messy and joyful and has all manner of difficult, hideous issues, all twisted together in the colourful thread of living.
Sometimes I see other parents looking at me, not sure what to say (say Hello!) Not sure whether to acknowledge my autism (it's fine - I like my autism so don't be scared). Not wanting to say the wrong thing (you won’t) and not wanting to make things worse (highly unlikely, trust me!).
I get it, that fear of the unknown, but it’s okay, I don’t mind. I’d rather say Hi and talk about it; I promise I won’t be offended because truly, me and my little family aren't strange, or otherworldly, or changelings; We're just a family, just like other families, and one that I absolutely love being part of. I wouldn't swap my family for the world.
We parents of ASD children have more in common with other parents than not. So I’ve decided to stop assuming that other people are coping better or have better lives than me, and accept that we are all on the same road. Some days running for joy in the light, and other days stumbling blindly in the dark, wishing for someone to come along and tell us what to do; to give us the answers.
So this is me, giving all of us permission to be scared. To be angry and hopeful, frightened and joyful in equal measure. We are all in the same boat, and it’s a pretty damn big boat at that, But somewhere, maybe on a different deck, I’m here. Going on the same journey, in the same direction.
So, fellow passengers, if you see me, give me a wave.
It’s going to be okay.
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