After Aidan’s initial evaluation with Dr Birgit Schlegel at Constantiaberg Mediclinic, we waited on tenterhooks for two weeks to receive her report. She had already indicated to us that she believed Aidan to be “firmly on the spectrum” and we were grappling with what that meant exactly. Did that mean he was profoundly impacted, and if so, what supports would he need, and how ongoing would they be?
As we waited for her email, I began – finally – to research autism properly. There was so much to learn! And I didn’t know what applied to us and what didn’t? We needed clarity. When Dr Schlegel’s email eventually popped into my inbox, I felt as if this was a milestone moment in my life. And it absolutely was.
Birgit noted that clinically, Aidan was significantly above the 97th percentile in weight and stature. At 18 months old, he was already the height of a 33 month old. Though this was unusual, she put it down to genetics, noting that he was not dysmorphic or syndromic. She had concerns about low muscle tone and the floppiness she observed when she had him walk down the hospital corridor, but noted that his muscle strength was normal, with no focal neurological deficit. We’d had his hearing tested at that point and it was within normal limits, but she’d recommended that we also do individual ear testing, since Aidan rarely responded to us when we spoke to him. Thankfully, she didn’t detect any signs of epilepsy at that stage.
Dr Schlegel noted that developmentally, Aidan had significant receptive and expressive speech delays. At that point, his only communication with us was via hand leading, and the changing tone of his primary stim: humming. He still hums to this day. She could further see that he was extremely noise sensitive with an aversion to unexpected or loud sounds in his immediate environment. She saw that he absolutely adored vestibular and proprioceptive input and that was great news for us! It meant that Aidan was sensory seeking, not sensory averse, and that he enjoyed touch and contact, which some kiddos on the spectrum do not. I was so relieved when I read this, because I couldn’t imagine not being able to cuddle my baby boy.
Birgit was fairly concerned about Aidan’s limited social emotional reciprocity. While she’d engaged him with fun toys and games during his evaluation, Aidan had never thought to show me, his mom, any of what he was looking at or playing with – something typical kids do a lot. She also noted that he showed some restricted and repetitive patterns of behaviour and displayed a number of sensory modulation difficulties. Overall, she scored him quite high on the Childhood Autism Rating Scale (CARS) at 43.5, which put him decidedly in the moderate to severe range – right of centre on the autism spectrum.
The fact that Aidan was not only autistic, but profoundly impacted, short-circuited my brain in that moment, and I struggled to read much more after that. It felt like I’d been hit by a train. I couldn’t believe it! And yet, I could… and that was the confusing part of all this. The first few months of Aidan’s life were tough. We were in the wars. Every doctor or nurse we took him to, invariably told us that we were only struggling because we were first time parents. That this level of sleeplessness, bewilderment, and overwhelm, was completely normal. But we knew! We knew it wasn’t supposed to be this hard. And now we were reading the report that confirmed that we weren’t crazy, we had actually been dealing with a level of medical complexity and high needs from the get-go. It was a blow to read, but a relief to know, all at the same time.
I put down my laptop and went to boil the kettle in the kitchen. It was another grey and overcast day – cold too. Our house has no insulation making it cold in winter, warm in summer. I felt like I needed a cup of tea. And as I sat waiting for my Le Creuset kettle to whistle, I watched my golden-haired boy spinning car wheels at my feet. He was reassuringly oblivious to anything going on around him. Or what his report had said. Just happy, absorbed by his Hot Wheels, playing quietly by himself. When I looked down at his flop of golden ringlets, and his extraordinary grey-green eyes, I didn’t see autism, or a disability. I saw a beautiful boy in his own little world, captivated by the concept of cause and effect. I knew then, in that moment, that no matter his score, we would find a way to shift it. We would dedicate every waking hour to helping him pick up tools and build the coping mechanisms needed to navigate a world not built for him. Aidan was then, and always will be, so much more than his diagnosis.
