What’s it like to be a sibling of a child with autism – the secret lives of siblings (Part 1)

Me and my brother with autism
When people ask me what it’s like to be a sibling of a brother with autism, I tell them with absolute sincerity of the wonderfully close relationship we’ve always had.

This is Part 1 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.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

By Jess Urcuyo

When people ask me what it’s like to be a sibling of a brother with autism, I tell them with absolute sincerity of the wonderfully close relationship we’ve always had, that he was my inspiration to become an Occupational Therapist, and that he’s taught me to see the world as full of opportunities and potential instead of setbacks and obstacles.

I don’t tell them about my 13-year-old-self.

My 13-year-old-self didn’t need an alarm clock. She was woken every morning at the same time to the same cassette tape playing the same segment of the same story until the glorious day that tape finally snapped. She was the girl who stood in the street and yelled awareness at the village ‘big kids’ because they teased her brother because of his autism. She was the ‘good’ child, you know, the one who didn’t have any problems. The one who would hold onto secrets of being bullied long after she left school because she thought her family had enough on their plates.

Then one day, she found a book at a thrift store; The Other Child, by Linda Scotson. A book about siblings of kids with exceptionalities. There was a chapter entitled I’d Like to Kick Stuart’s Head In. She blushed from head to toe, and as nonchalantly as she could, she dropped it in her parents’ shopping basket.

I remember that night vividly. I stayed awake long after my bed-time, reading like my life depended on it. That book was a glimpse into a whole new world. A world where it was ok for siblings to experience real feelings and talk about them. It would still be many moons before I’d open up about some of the challenges I’d been through as a result of being a sister of a child with autism, but the delicious taste of that exotic cuisine was on my tongue, and I was hungry.

My Brother is Autistic
It was tough enough just to get my brother’s autism recognized.

In fairness to my parents, they did everything they knew how to, to equalize our family life. But life through the lens of a sibling wasn’t the hot topic on anyone’s agenda back in the ‘90s. It was tough enough just to get my brother’s autism recognized.

Are we any the wiser these days? I’d like to think so. But in the fast pace of life with its endless juggle of priorities, the picks ups and drop offs, the meltdowns and breakdowns, it can be easy to lose sight of the sibling experience. Some siblings might need professional support to help them on their personal journey. For others, a genuine acknowledgement that it’s ok for them to have their own achievements, challenges, and needs can go a long way towards opening up the conversation.

For the record, I’ve never once wanted to ‘kick Stuart’s head in’. But the book still sits on my shelf as a gentle reminder of the liberation that one short sentence once held for me.

Check back tomorrow for Tips to promote well-being in siblings of children with disabilities (Part 2).