‘Diddle, diddle, diddle’ that’s all he said.

It was around Z’s first birthday that I started noticing differences. He stopped saying words he once used - there weren't many to start with, which is why it was slow to pick up on. He would say things like ‘Dadda’, 'Hiya', ‘Yes’, ‘No’ and I was convinced he said ‘Grandad’ one time. But the words slowly started being used less and less frequently and there were no new words, just a made up language. Z was a real chatterbox, but none of it made sense, it was ‘Diddle, diddle, diddle’ that’s all he said.

At the same time his eye contact was going, I would say his name and get no reaction. Even when he was paying attention to me he wouldn’t look directly at me. Z’s nursery had also started to raise concern that his speech was delayed and he was a little behind some of the other children because of it. I contacted Z’s health visitor who’d said it was still early days, to give him some time. So that’s what we did.

Then meltdowns started. Although at the time I didn’t realise that’s what was happening. I thought he was just being a typical kid. I even have a journal entry saying ‘terrible twos came early’. But while away on holiday in France I remember thinking, this is extreme. He could cry non-stop for what felt like a lifetime, and there was nothing I could do to help. It's a hard thing to witness your own child so upset and frustrated that they start to bang their head on the floor or walls. I think meltdown needs its own discussion another time, it’s a very complicated and heartbreaking thing.

After a few months and no progress I contacted Z’s health visitor again to discuss my concerns. She referred us to the paediatrician and that’s where our journey into diagnosis really began.

Every child with autism is different and these signs are just the things I first noticed with Z. He’s changed so much since then. His eye contact is so much better, his speech is improving (still very limited but it’s progress). We’re still learning how to deal with meltdowns but we’re now getting to know when they’re about to come on and how to try to avoid them happening. It’s taken lots and lots of patience and it’s not easy. There’s times I do need to walk out of the room, and times I burst out in tears, I’m pretty sure I look a tired mess most of the time but above it all, we laugh, a lot.

Sarah x