Diagnosis Part One

Part One - The start of diagnosis

This is going to be a long one so I’ll break it up across a few posts so you don’t need to read an essay all at once!

I’ve spoken before about our concerns with Z’s development and why we suspected ASD in the first place. The speech delay, the meltdowns, lack of eye contact and seemingly ignoring us when we spoke to him. It all seems so obvious now. At the time there was never really a breakthrough moment when I thought ‘Ahhh that’s it!’ it was a slow realisation over time. I knew about autism for a long time before this but it took me a while to piece the evidence together and yet at the same time I’d been thinking about it since before his birth. I used to get those scary emails from pregnancy/baby apps ‘how to spot signs of autism’ etc landing in my inbox. But Z didn’t present those signs or at least not many of them, which goes to show that ASD is so individual.

Bit by bit I put it together in my mind, literally afraid to say it out loud incase that made it come true. I even just had to check with Daddy Z to see if we ever had that conversation before the Paediatrician suggested it to us and he has no memory of us talking about it.

So I’ll start when we were on the waiting list for SLT (speech and language therapy) and to see our paediatrician. Z was around two and a half by this point. He was falling a little behind in some areas compared to his peers and his speech was very behind. It was the meltdowns that were hardest to deal with, they were at an all time high because he couldn’t communicate his needs with me. I imagine most two year olds are quite determined little things that don’t enjoy not getting their own way anyway, but when they cannot speak to tell you what they want in the first place it’s pretty unbearable for everyone.

We’d waited and waited, finally, our appointment with the paediatrician came through, August 2018. I was nervous because I knew it would be confirmation of my worries. As we were waiting to go in I saw a mother struggling in the waiting room with a boy I thought was clearly autistic and although much older, reminded me so much of Z. I looked at her and she looked at me, clearly tired and worried she was being judged. I just smiled at her and said ‘oh that’s very familiar’ as the boy refused to budge from the waiting room floor, getting more and more fractious.

The Doctor took all our details, our medical history, family history, pregnancy history, everything about Z’s two and a half year life so far (a story we would go on to repeat many, many times). She wanted us to go for hearing tests to rule that out but we knew his hearing was ok, he could hear aeroplanes in the distance but not us call his name right next to him. Then she said to us that he was showing a lot of ASD traits - this being the point I finally cried. She looked at me and said ‘you look like you’ve been thinking this for a while’. Yep. I don’t think I was just crying because I was shocked or upset, but that I was relieved to have my suspicions confirmed. That there was a reason and now we could take some action instead of feeling in limbo.

At the end of our appointment we were referred to CAMHS (Child and Adolescent Mental Health Services). Turns out we were to stay in limbo a while longer…

Sarah X