What it is Like Being the Sibling of Someone on the Spectrum

Words by Miriam, 19 NSW

Siblings are the worst, aren’t they? Not my brother. He’s pretty great, but not everyone sees him that way, because he’s different.

People don’t like different. Of course, there are times when I find my brother excessively, painstakingly irritating, however, I’ve learnt that when you’re the sibling of someone on the Autism Spectrum, often your feelings need to be kept to yourself and nobody else… or so I thought.

My brother was diagnosed at the age of five with Asperger Syndrome and ADHD and I found out a year later. At first it didn’t really matter to me, he was my younger brother. He was still annoying, but certain changes came about which made his condition a lot more complicated to deal with. Changes like him receiving all the attention. Changes like him being bought electronic gifts, to help him learn skills for early intervention. Devices I had always wanted but didn’t need because “there was nothing wrong with me”.

In Year 8, my parents sent me on a camp for children who are siblings of people on the Spectrum, which was run by Autism Spectrum Australia (Aspect). I found that many of us were struggling in some way; depression, anxiety, anorexia, assholism. Obviously, our siblings were all affecting us, but that’s not to say it was their fault. This camp as a whole, was really beneficial in understanding autism, it also taught me a lot about myself and the internal struggle of being a sibling of someone with this developmental disorder.

As I’ve grown older, I’ve learnt to adapt to the sudden routine changes that started to occur when I was nine. I get myself out of bed, pack my bag, go to school, be there for my brother if he needs anything, do my homework, go to bed. But life’s more complicated than a mere routine. There was no room for me-time and I started becoming overworked, overtired and overstressed and I told no one.

When your parents stop focusing on you, you need to learn to adapt. My “adaption” was to keep everything to myself.

Feeling stressed? Keep it to myself.

Feeling anxious? Keep it to myself.

Feeling overwhelmed? Keep it to myself.

Feeling like I’m dying? Keep it to myself.

I was constantly anxious, and I felt like I had no one to talk to because I had been isolated for so long.

At school my brother would annoy people in my year, and they would complain to me. I didn’t know what I could do. I wasn’t a teacher or his parent. I couldn’t discipline him. People would bully me because my brother was different. I began to really resent my brother because it felt as though he was the cause of many miseries in my life.

I never stopped loving my brother. We would always play games and hang out and tell jokes, but I resented how his situation was impacting me. It made me feel as though I was unimportant and that my issues were miniscule, so I started internalising my emotions. I also felt guilty that my brother annoyed other people and that he was a burden in my life.

No one at school would understand, I was the kid with the “weird brother”. I didn’t trust the school counsellors; they were too chatty with the school faculty. My teachers started worrying about me, but I was too scared to talk to them because of the potential consequences. I couldn’t talk to my parents because they were too focused on work and my brother. I had been so used to not telling them anything that I became fearful of them even knowing I was going through something. I didn’t want my parents to help me and I didn’t want my mother to feel even more guilty than she already did.

After coming to school every day crying, in Years 10 to 12, and my teachers worrying incessantly, I realised I couldn’t continue going on the way I was. I plucked up the courage to go Headspace to see a counsellor, who referred me to a doctor, who eventually referred me to a psychologist and I got diagnosed with Generalised Anxiety Disorder – without my parents’ knowledge.

I kept this secret from them for four months and when I told them, they were nothing but supportive. They didn’t see me any differently and told me they were proud of me for going and getting help. And that’s how it should be with all kids. Everyone should be accepting and not see people by their condition.

We should be celebrating diversity and difference – not concealing it or mocking it. Ultimately, being different is part of being human and it’s something we should all be proud of. After realising the impact that my brother’s life was having on me, I needed to also realise that my issues were just as important and that I too deserved support. There is no shame in being a little different and it took me a while (and is still taking me some time) to finally come to terms with that. But I’m trying.

Illustration by AileenYou can find more of her work on Instagram @aileenetc

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