When did you know? How did you know? What kind of things was he doing?
These are all questions I have been asked regarding Luca's behaviours. The honest answer is that I knew in my heart when he was still quite young - around 10 months, I'd say. However, there was a huge part of me that wondered if it was just "phases" - you'll hear that a lot from many professionals to try and explain behaviours at this age. At this stage, I was happy for doctors and community nurses and development officers to sidestep my worries because I wasn't fully ready to embrace them. To embrace the challenge that I knew would come with them. So I watched my baby repeatedly spin the wheels on his cars, and lean over the shopping trolley so he could see the wheels turn as we moved. I watched him become more and more obsessed with one TV show, and as he got a little bigger and more physical, I watched as he flapped his hands when the show came on. I watched as he ignored his name being called time after time and I allowed people who I thought knew better than me to tell me it was all a "phase".
He met all physical milestones dead on. Early for some. And he babbled constantly - no words, though. Eye contact wasn't an issue. He didn't walk on tiptoes and he had the attention span to play with certain toys for more than a minute. He was happy in his cousin's company and would play alongside her. But I knew. I knew that my child was eventually going to be diagnosed with autism. And in theory, I thought, that was ok. The reality was different.
At Luca's 12 month review (he was 11 months), he scored in the normal development range. There were a few markers where the score could have been better - all within the communication category - but overall, according to that bloody test, he scored normal. Low, but normal. It was at this very appointment that I mentioned autism. I was told not to worry, he wasn't presenting anything worrying, his speech would come and everything was a "phase". I was at the stage in my acceptance that I grabbed this reassurance with both hands and put it in a fireproof box in a lockable safe. They knew better than me.
The thing is with that age and stage test is they repeat it. And ordinarily, kids develop more in the time between the first and second. And Luca did, too. We took the second test when he was around 27 months. He was in a great mood, amenable to being asked to do little tasks and play, but I knew that there hadn't been a whole lot of progress in some areas. His speech was still non existent and his attention span was dwindling, his fine motor skills were good, but not consistent. He scored low, but a high low. In terms of the numbers for concern, Luca was only just into them. I mentioned autism again. It was a genuine worry for me, and this time I had the backing of his nursery. They had asked me about Luca's hearing - I told them it was very selective. He also started to walk on tiptoes and he was not a fan of cutlery.
And so when I mentioned it this time, I was assertive. I wanted them to take me seriously. And somewhat reluctantly, we got a referral to the development centre. I felt vindicated. I won.
I didn't really. I first asked about Luca's development when he was 11 months old. It took a further 16 months to be taken seriously enough to be referred, and then an additional 4 months to get an appointment at the development centre. The system, the professionals failed us.
Luca should have been diagnosed when he was 2 years old. As is stands, it took so long that we couldn't access the under 3 pathway to diagnosis. He is now 3 years and 7 months and we are still waiting on the official letter confirming his diagnosis.
All because I was told it was a "phase".