The 5 Steps of Grieving an Autism Diagnosis: A Journey You Didn't Ask For, But Here We Are

When James was diagnosed with autism back in 2011, I was floored. It wasn’t like the movies or the stories you read about where everything suddenly made sense, and we all held hands and found a new way forward. No, I felt lost. I didn’t even know what I was supposed to feel for a while.

I’ve spoken to many parents who’ve gone through that same overwhelming moment. You don’t mourn your child, of course not. But there’s a grief there – a quiet, confusing grief for the life you thought they might have, for the things you assumed would be easy, for all those unspoken dreams.

Here’s the thing: grieving is okay. You’re allowed to. And, spoiler alert – it won’t be easy. But you’re also stronger than you think, even on the days you feel like you’re drowning. So, let’s talk about those stages of grief we hear so much about. It’s not a one-size-fits-all, but here’s how it played out for me, and maybe it’ll help you figure out your own way through.

1. Denial: That First Punch in the Gut

I spent weeks after James' diagnosis convinced that it had to be wrong. There had to be some mistake, right? I mean, sure, I had my suspicions, but seeing it written down felt like someone had slapped a label on him that would never come off.

Denial is the first shield your brain puts up. It gives you time to breathe, to pretend it’s not happening for a bit. But here’s the thing: you can’t stay in denial. At some point, you have to let yourself process it. Lean on people who get it, because, trust me, there’s a whole community of parents who have been in those exact same shoes.

2. Anger: Why Us?

Oh, I was angry. So, so angry. I was furious at the doctors, at myself, at the universe for putting this on my child. It’s not fair, and it never will be.

Anger is a tricky one. It’s like a fire – it can burn you out or light a path forward. I chose to use it. I fought for James, for his right to the education and support he deserved. I channelled all that rage into something that actually helped him.

If you’re feeling angry, don’t bottle it up. Find ways to let it out – whether it’s talking, writing, or just screaming into a pillow (yes, I did that too). But don’t let it eat you alive.

3. Bargaining: The ‘What Ifs’

If only we had caught it sooner, if only we tried that therapy, if only… you know how it goes. I spent ages in this stage, trying to make deals with the universe. I wanted to control something, anything. But here’s the hard truth: there’s no magic fix.

That’s a tough pill to swallow. You can’t bargain your way out of autism, but what you can do is focus on what you can control. You can learn, advocate, and give your child the best shot at a life that works for them. The ‘what ifs’ won’t help, but action will.

4. Depression: When It Hits You

This one creeps up on you. After the initial shock wore off, the sadness rolled in like a fog. I wasn’t mourning James, but I was mourning the future I thought he would have. And that’s okay.

It’s important to give yourself space to feel this. Some days, it will feel like too much. On those days, be kind to yourself. Take breaks, ask for help, and remember that even though it feels overwhelming now, it won’t always. You’ll find new things to look forward to, even if they differ from what you imagined.

5. Acceptance: A Work in Progress

Let me be clear: acceptance isn’t about being fine with everything. It’s about realising that this is your child’s journey – and yours, too – and learning to walk it together. It’s not an endpoint but a shift. You start seeing your child for who they are, not who you expected them to be.

With James, acceptance came when I stopped looking for a way to ‘fix’ him and started focusing on how to support him. He didn’t need to change – my understanding did.

Acceptance isn’t this magical moment where everything clicks into place. It’s messy, and some days, you’ll feel like you’re right back at square one. But little by little, you’ll find your groove, and you’ll realise that your child’s story, while different, is every bit as valuable.

Grieving an autism diagnosis is a journey you didn’t ask for, but it’s one you’ll learn to navigate. Some days will feel impossible, but you’ll surprise yourself with how strong you can be. Wherever you are in this process, just know: you’re not alone. You’ve got this.

Author Bio

Nicola Killops founded the NeuroParenting Hub, a dedicated platform offering support, resources, and advocacy for parents navigating the journey of raising neurodiverse children. With over 20 years of experience in education and a passionate advocate for neurodiversity, Nicola is committed to creating a world where every child’s unique strengths are recognised