At the very core of our WhatDo endeavour is Lumen, who was diagnosed with autism (or Autism Spectrum Disorder, ASD or ASC) when he was two and a half. When he was about 18 months, I suspected he might be autistic. I did a lot of my own research, and the battle to have Lumen diagnosed was just that: a battle.
Despite all current research showing that early intervention (i.e. occupational therapy, speech and language therapy, music therapy, parent workshops and support, etc.) is key, we were rejected for an assessment appointment primarily based on Lumen’s age. I continued to fight for this appointment, but the issue seemed to be that doctors in the UK do not like to diagnose children at such a young age.
After fighting for nearly a year for Lumen’s assessment, we received an appointment that was a developmental check. Although I told the doctor that we required an ASD assessment, not a developmental check, he carried on. He asked Lumen to stack blocks, which I told him he had never done. He asked why he was just sitting in the corner. He asked Lumen to write something on paper, which I told him he had never done. He said the words ‘hopeless’ and ‘useless’ during the appointment. And towards the end of the appointment, he asked, “Do you regret having him?” I asked him if this was a standard question, perhaps some sort of question to determine my emotional fortitude. He said, “No, I’m asking you personally, because it seems like a lot to deal with.” I left this appointment in tears.
Lumen finally received his ASD assessment. He was diagnosed, and it was only with this diagnosis that our lives changed. Anyone who knows Lumen knows a very beautiful, very happy, very energetic little boy whose laughter is infectious. Lumen is learning, Lumen’s brother Enlai is learning, we are all learning. We feel privileged to enter Lumen’s world, to try to understand his motivations, his frustrations, his wonderful way of looking at the world. We feel very fortunate to have Lumen in our lives.
One thing that has always stayed with us is that development assessment appointment. And since then, what we have encountered and what Lumen has had to experience when he’s not at home or school – expectations to conform to a neurotypical world; judgments; others fearing, disparaging, and lambasting him – has shocked us to our core. It has shocked us in such a way that we feel compelled to share our belief that no autistic individual deserves to be treated in a hurtful manner. Our family celebrates neurodiversity, embraces differences. We all should.