The Journey to Diagnosis
By Amy Hamilton | Published on January 14, 2021 | 9 Minute Read
For the longest time after I’d given birth, I didn’t refer to Luca as my son. Here he was, days old, completely dependent on me and everything I had to give him and I didn’t feel like a mother.
He was always “my little boy”. Sure there probably isn’t a grain of difference, other than terminology, but it was what the words symbolised. Mother and son was a team, a unit and we were far from that for the longest time.
It’s amazing what the feeling of inadequacy does to a person - how it has a hold on your mind and your ability to make decisions, how second nature doesn’t exist in your world anymore and the disconnect from what is right in front of you clouds any and all judgement.
It’s also amazing how quickly those Mama Bear claws come out as soon as you feel your child is being failed by the health care system.
Luca was 11 months when I started, privately, having feelings of doubt over his development. It was very subtle at first; not responding to his name every time and a fascination for spinning wheels. Both were chalked up to selective hearing and a phase. But any time I’d consult Google, there it would be, glaring at me from its spot at the top of search results: Autism.
I spent so long looking for new signs and symptoms, that I didn’t enjoy how wonderfully content and happy my child was. How could he be? Autism came with many “red flags” and very few of them were happy and cheery. Where were the violent meltdowns? Where was the aggression? Where was the flinching whenever he was touched or hugged?
"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. "
When I first thought about the finality of an autism assessment, it felt like everything would change. All I could focus on was what this piece of paper would mean for my son - the support he’d require, the consequences for his future, for his present, the opinions of strangers and the uneducated, the battle I was going to have to face just to make sure his life was as easy as other children.
I’ve since realised that a piece of paper doesn’t change anything. I’d have these struggles to face without it, but with it, I’d feel justified, vindicated. I’d feel as though I had fought for the rights of my son. So we’ll wait. And we’ll get it eventually.
Until then, I’ll focus on Luca. I’ll watch as he learns to throw and catch, I’ll learn his triggers, I’ll laugh when he giggles at absolutely nothing, I’ll hold and comfort him during a rare meltdown. I’ll feel pride when I see him run and jump and laugh and explore, knowing that he’s as happy as he is because of us. I’ll enjoy him. I spent so long of his first year not feeling joy and it is something I’ll forever feel guilty about.
I still have one very potent fear. And it is the fear of every parent, special needs or not.
What happens to Luca when Mummy and Daddy aren’t here anymore? Who will help guide him and support him and fight for this world to be accepting of him? Who do I trust to be the voice for my non verbal son? We may have not been a unit when he was born, but we’re like glue now, and whilst he doesn’t show he understands a lot, he understands absence. He notices and I need him not to be underestimated by anyone.
His life is full of potential. Full of great and wondrous things just waiting to happen. Of course, we’ll have bumps along the way - he’ll regress, I’ll become overwhelmed with the magnitude of raising an autistic child and an autistic teenager and an autistic adult, we’ll have to endure ignorant stares and uneducated words and we’ll have to fight - but at the end of the day, we’re us. Luca, Mummy and Daddy and as long as we share the load, keep focused and remember that difficult moments don’t have to mean difficult days, we can learn to let go of our doubts and insecurities.
We can stop and enjoy. We can watch and smile as he has fun navigating his world.
We may still be waiting for our diagnosis, but we’re having a great time whilst we do.
About the Author
My name is Amy and I am mother to Luca.. He is my pride and joy, although it didn’t always feel that way. I am 34 years old and a PE Teacher. We live in Scotland, where it’s rarely sunny although being outdoors is our favourite thing to do. Neil, my partner, and I have one wish when it comes to Luca – happiness. Follow us on our Instagram @whatlucalikes to see how we try to raise awareness and acceptance of autism.