"I spent so long looking for new signs and symptoms, that I didn’t enjoy how wonderfully content and happy my child was."

You see, Luca didn’t and hasn’t ever displayed these traits, but when all you read are parents’ experiences detailing each and every harrowing minute of a meltdown, you wonder when it’s going to be your turn. And so you wait. And wait. And wait. And whilst waiting, you miss other little pieces - subtle shifts and changes that,in hindsight, are so significant.

Luca was 2 years and 5 months before anyone took us seriously. He was 11 months old when I first voiced my concerns to the community health team. Early intervention is a phrase we hear a lot, too much. We hear it too much because, quite simply, it isn’t practised. Early intervention, for us and many families like us, didn’t exist. We had to fight. And wait. And fight some more. I would detail each and every one of Luca’s repetitive behaviours, express concern over his lack of verbal communication and understanding, his disregard for play and when all that failed, I bluntly told health professionals that I was concerned about autism and I wanted him assessed.

I had hopes when Luca was referred to the development centre. I hoped, admittedly wrongly, that he’d go in, they’d work with him intensively, and he’d finish his time there almost as though he was a different child.

I was so wrong.

The staff were great, that wasn’t the problem. The problem was he was a “conundrum”. Their words, not mine. I have always worried that Luca would be overlooked because he was happy. I could see it happening; not knowing how to approach a plan because of his lack of “symptoms”. There were 2 other children at the centre at the same time as Luca - one significantly younger (not 2 yet) and one the same age, but both very different in personality to my little boy. Where he’d go into the playroom and flutter between areas of interest and cuddle and smile, the other children would throw and destroy and self injure. Luca was “easy”. I understand now that this was something that would be counted against him as he was assessed as an under 3. My boy was too content to have autism when he was 2, apparently. To hear that your thoughts haven’t been agreed with, stings. It’s invalidating. It makes you question whether whatever you’ve seen or heard is figments of imagination. To hear that a diagnosis is refused because they want to “wait and see” is entirely infuriating.

I understand the stigma surrounding labels. I understand how damaging it can be to put a label on something and then sometime down the line, have it removed or altered. What I don’t understand is how professionals who have never met my son and only read about him on a report or document can make a decision. You see, to witness Luca in action is to see autism in action. Because even though he doesn’t display some of the “harder” or “more severe” red flags, it is painfully obvious that he is different from a typically developing child - the flapping, flicking, jumping, spinning, finger bending, head shaking, raspberry blowing, squealing and tippy toes are absolute characteristics of an individual with autism, and these are characteristics that are ever present in Luca. Throw in the lack of verbal communication and lack of responsiveness and, to me, it’s a done deal. But not to them. And so we were placed on the over 3 Autism Assessment Pathway and we were told it would be a wait.

We’re still waiting. He’s 4 years and 4 months old.

"To hear that your thoughts haven’t been agreed with, stings. It’s invalidating. It makes you question whether whatever you’ve seen or heard is figments of imagination. "