Dear Anyone Dealing With A Diagnosis, I Want You to Do This One Thing for Me


I want you to do something for me.

Cry. Write. Sing. Paint. Crochet.

Whatever it is you do to let it all out when you’re frightened or hurting inside.

Promise me you will?

I’m not asking this in reaction to something bad that happened today or yesterday. I’m asking because this autism journey – as an autistic person, an autism parent or carer, as an autism sibling – it can be tough. Sometimes it feels like it’s tough all the time. You need to be strong to get through it.

But what do we mean by “strong”? I spoke to someone who felt like “strong” meant they shouldn’t let their emotions out, they shouldn’t give voice to their fears because that would weaken them and rip them apart.

Maybe. Or maybe that’s what happens if you keep these heavy things bottled up inside, allowing the pressure in the bottle to rise so much that it blows the cork right off the top and everything inside spills out.

Messy. Uncontrollable. Explosive.

I see “strong” as something slightly different. I see strong as not being afraid to give form to the things that scare us – to draw them, write them down, talk about them. It makes them more real and tangible, but it’s only when they become real that we can really deal with them.

I remember the day that my husband and I decided we were going to push for Melon’s autism diagnosis. It was a hot, sunny day. We hadn’t slept more than a couple hours in a night for four months due to Melon’s sleep issues. We’d just watched Melon have her fifth or sixth meltdown that day. She was in torment. We were in torment. We were falling apart. We sat in the back, slumped on the garden furniture, lost in a miserable silence.

My husband looked up and said, “Maybe, when the services open again in September, we should ask them to screen for autism, just to… to… rule it out… Do you think, maybe… it is autism?”
And I remember saying, “I do. I think she is autistic”.

And there it was. I said out loud to him the words we’d been dreading to hear from a professional. And as I said it, I broke down crying for maybe two minutes. I knew, beyond a shadow of a doubt, it was true. And then, suddenly, it didn’t feel so big. It wasn’t just a nameless, shapeless fear ricocheting around in my head anymore.

We could begin to deal with this reality.

We still are. It’s an ongoing process. There are things every day that make us worried, scared and sad. But we can’t carry them around forever; we have to put them down somehow or they will crush us. We deal in different ways. I write. I find that writing is a way of me taking control of my thoughts and feeling, setting them into some type of order and reason, reflecting on them. My husband is more of a talker. Melon is an artist; she draws it out.

So, go write, jog, knit, talk to someone, type an email that you only ever send to yourself, hold your pillow close and talk to it, lock yourself in the bathroom at work and have a good hard sob for a couple of minutes. Whatever you need to do to give form to your fears, make them tangible and put-down-able. You might just find that you are stronger for it.

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