Now what? Life after the diagnosis.

For over fifteen years, my life has revolved around trying to understand, support, and advocate for my family. It all began with my eldest - my son - who was the first to be diagnosed as autistic. That process alone was a steep learning curve. The signs had been there all along, but it still took a lot of pushing, chasing and second-guessing before anyone would take us seriously.

Looking back, I can't quite believe how much time and energy I spent trying to convince professionals that what we were experiencing wasn't just "bad behaviour" or "quirky phases", but something deeper. I was passed from person to person, each one more interested in ticking boxes than listening properly. I was blamed for my parenting more times than I can count - told I was too soft, too anxious, or just looking for an excuse. And yet deep down, I knew something more was going on. On the rare occasion I spoke to someone who agreed something was right, they said it wasn't "their job" and passed us elsewhere (or worse, left it at that).

It was about eight years into this exhausting journey that something shifted. After spending so long researching Autism to support my son, I started recognising patterns - not just in him, but in myself. It was like reading my own story for the first time. Things I'd always thought were just my personal struggles, my "weirdness", started to make sense in a new way. I began to wonder whether I might be autistic too. And later, I realised ADHD was also part of the picture.

By the time I started seeking my own assessments, I was already worn thin by years of fighting on my children's behalf. But something inside me had changed - I had this growing sense that maybe I deserved answers too.

 

One child, then another.

My younger son - who was assigned female at birth - flew under the radar for years. He masked incredibly well, especially in school settings. It was a relief to see him thrive at First School, not having to go through the same struggles as his brother did.

It wasn't until he started high-school that things began to shift. His school actually approached me first, pointing out things they'd noticed. After everything we'd been through with my eldest, I was cautiously optimistic. I thought, finally - someone's being proactive. But that hope was short-lived. After the initial conversations, things quickly started to unravel. Promises were made and forgotten, concerns dismissed, referrals going "missing" and support withdrawn just when it was needed most.

Once again, I found myself right back in battle mode - pushing for answers, explaining, justifying, trying to be heard. Only this time, I was doing it for my two children... and myself.

 

Living in "Prove Mode"

Until recently, I hadn't realised just how much time and mental space I spent trying to justify not only my children's needs but my own. I was constantly switched on, scanning for traits, trying to predict how someone might respond, preparing myself to defend us if anyone questioned why we were struggling - or just being ourselves.

I had entire conversations rehearsed in my head that never even happened, just in case I needed them. I became hyper-aware of every reaction, every meltdown, every deviation from the so-called "norm", because I new that to get support, I had to be specific. I had to be convincing. And that meant never letting anything slip by undocumented. Literally - I had folders of notes and a memory bank full of traits, behaviours, and "proof", along with research and articles to back me up.

This state of constant justification became so ingrained that I didn't even realise how much it was affecting me. It shaped the way I thought, the way I parented, even the way I viewed myself. And in the moments when we weren't actively fighting for assessments, I felt almost... unsettled. Like if I wasn't doing something about it, we'd slip through the cracks again.

 

And then... we were all diagnosed

Eventually, we got there. One by one, through various pathways, we received the diagnoses that had always felt just out of reach: Autism and ADHD - for both of my children, and me. It was validating, of course. It confirmed what I'd known in my bones for years. But it also came with an unexpected weight. 

I thought I'd feel triumphant. Like we'd crossed a finish line. And for a moment, it did. But very quickly, that feeling was replaced by something quieter, and a lot harder to name.

There was no next step to chase anymore. No form to fill in, no appointment to schedule. The fight that had consumed so much of my life - that had shaped my identity - was suddenly over. And I didn't know quite what to do with myself.

 

Unlearning the habit of defending

What I've come to realise is that when you spend so many years justifying your existence, it's hard to stop - even when the need is gone. My brain didn't get the memo that the fight was over.

I still catch myself over-explaining things in conversations, mentally defending choices no one is questioning. I pick up on little examples of our AuDHD in action and have to remind myself that I don't need to note that down anywhere. It's a hard habit to break - the constant readiness to prove yourself.

Diagnosis didn't magically wipe that away. But it did create the space to see it, and slowly start letting it go.

 

Reclaiming space to just exist

No, I'm in this odd in-between phase - not pushing for answers anymore, but not fully settled either. It's a strange sort of stillness. Quiet, unfamiliar, and at times uncomfortable. But I'm starting to see it for what it really is: space.

For the first time in years, there's room to think about what we need now, not what we had to prove yesterday. There's space to focus on building a life that works for us - not one that performs "normality" to meet someone else's standards.

I'm learning how to support my kids in ways that feel aligned with who they are, without constantly looking over my shoulder. And I'm starting, slowly, to reconnect with myself too - not just as a parent or advocate, but as a whole person who has been through a lot, and who's still here.

And to be clear - diagnosis didn't magically fix everything. In many ways, it just gave me a different kind of fight. The one for actual support. For accommodations and understanding - from services, employers and even friends or family.

But there was something that changed. Before, I was constantly trying to prove we need help at all. Now, I'm fighting with the clarity of knowing - not questioning - who we are and what we need. That doesn't make it easier, but it does make it different. And that difference matters.

 

If you're still in the thick of it

 If you're still chasing referrals, or doubting yourself because professionals don't seem to be listening - I see you. I know how exhausting it is, how lonely and frustrating and unfair. You're not making it up. And it's not your fault.

And, if you (or your child) are newly diagnosed and feeling oddly disoriented - like you should be celebrating, but instead feel a bit lost - that's okay too. It's normal. You've spent years in survival mode. It takes time to learn how to live differently.

Just remember this: we are not broken. We never were.

We're just finally being understood - and now, we get to understand ourselves.