This is Part 3 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.
Written By Jess Urcuyo
Here’s how it went.
Them: “Do you want the good news or the bad news? The bad news is we won’t be getting the donkey we were planning for. The good news is you’re going to have a baby brother!”
Us: “Woah…hold the phone…we’re not getting the donkey?”
When my younger brother was born, my parents knew something was a little different. As he developed, they continued to see red flags that later turned into a diagnosis of autism. Despite being 7 years old when he was born, I don’t remember the Big Conversation about the fact he had autism. Neither does my older brother. Because there wasn’t one. The only Big Conversation we had was the Donkey Conversation.
Our parents made the brave decision to share their journey with as they were learning. Brave, because they didn’t know route or the destination. They reasoned that by being open with us about my brother’s challenges, we would all be more accepting of his needs. They would tell us ‘his brain is wired a little differently’ or ‘he just learns in a different way’. They would point out how we were also different. As they learned more, so did we.
We learnt as a family, and that included our grandparents. In fact, it was my grandmother who first saw a poster describing what autism was, recognizing her youngest grandson in the blur of words.
In time, we learnt that autism was just a way to describe the things we already knew about our brother, that he’d get more help at school if he had a label, and what the heck a label was anyway.
Our brother learnt what autism was too. Occasionally he’d use it as an escape route to avoid things he didn’t want to do, but more often it would give him a framework. A framework to understand a world that is wired a little differently, that just learns in a different way.
These days, the choice to disclose is up to him. It’s his medical record after all. There’s no need for a Big Conversation…unless of course that donkey is still available. Now we’re talking!
Check back tomorrow for How to explain a diagnosis like autism to siblings (Part 4)!