I’m a married mum of two from the North of England whose son didn’t speak a word until he turned three. He was diagnosed as autistic a year later. Three years on and I’m seeking my own diagnosis.
When my son was first diagnosed my world fell apart. Based on how the media and society talks about autism I thought our lives were over and I wanted to jump under a bus. All this talk of disorder, deficits and lack made me feel like I’d given birth to a half-human who “wasn’t all there” and painted a picture of a very bleak future for us as a family.
But with a four year old and a brand new baby to take care of obviously jumping under a bus wasn’t an option. So instead I did my research and set out to become an expert. At that stage my primary goal was to help him fit in and lose the diagnosis. I wanted someone to say the diagnosis was a mistake. I never wanted to hear the word again as long as I lived.
Thankfully my research eventually brought me into contact with autistic adults. And my mind was blown. They were nothing like I expected them to be, they were articulate and fully human, “all there”, and they weren’t really all that different to me at all, in fact they sounded a lot like me, an awful lot like me…
This lead me to discover terms such as “neurodiversity” and the social model of disability, which was a revelation compared to the medical model. Everything changed. We suddenly had a much more positive, informed and hopeful view of autism.
I still worry about my son’s future, of course I do, every parent does. But I have no ambitions for him to lose his diagnosis anymore. He’s perfect as he is. Our focus is on helping him grow and overcome any obstacles he faces, sensitively – curing autism just isn’t on our agenda – although changing the world is.
And yes, it turns out my son isn’t the only autistic member of the family either. I have a question mark over my Grandad; my mum I’m certain about; me – I’m pretty sure I am. My husband…. well, he does wrestling commentary and can talk for hours on the subject without noticing the glazed expression on other people’s faces…
And my daughter? Only time will tell. She’s a great talker, plays with toys “appropriately” (what is so wrong with lining them up and spinning wheels anyway??), makes friends… So far signs point to neurotypical. That’s ok. She’s free to be the person she’s meant to be.
So now I’m busy peeling back the layers of my own self-deception, trying to find the truth of who I am and what makes me tick. Hence “Meanwhile in the real world” – I’ve no longer got my head in the clouds and I’m facing up to reality.
I knew I was INFJ, probably a Highly Sensitive Person (HSP), definitely an introvert. And maybe now autistic too. My hope is that armed with a much better understanding of myself (with or without official diagnosis) I can find a better way to navigate the world and be happier as a result.
And you know, three years on from my son’s diagnosis we’re all doing pretty well. This is not the bleak and miserable existence I thought it would be. Quite the opposite.