Scrolling through TikTok, I come across a video of what it’s like to have an autistic sibling. Of course, it paints a picture of the neurotypical sibling having a harder life as they have to deal with an autistic sibling. I have seen videos like this so many times, always with the neurotypical family members being “victims” of autism.
I’d like to share my story on what it’s like having a neurotypical sibling, and how difficult that was. Autism was never the problem, it was the lack of understanding that broke the relationship.
My brother is five years older than me, and was different in many ways. He had big groups of friends, was very independent and extremely outgoing. As he got older, he stopped seeing me as a sister and started seeing me as a diagnosis.
If ever I was in crisis, he’d complain that I was spoiling things with “tantrums” and that I always got my own way when my parents calmed me down or accommodated my needs. He’d never let me hang out with him or his friends, because I was too weird, and if I ever started to talk about my special interests, he’d pull faces to those around, us until I was too uncomfortable to speak.
His view of me never changed, not even when I became an adult. He refused to let me go anywhere with him in case I had a “tantrum,” and he wasn’t interested in getting to know what I liked or what made me happy. To him, I was a whiny, whinging brat who will forever remain, in his mind, a five-year-old who cannot handle the world.
The last straw came when we went to Paris for our dad’s 50th birthday, and his wife ruined our day at Disneyland by having an actual tantrum (ironic, I know) because she didn’t like the holiday. They both lied and blamed my autism, saying that I’d had tantrum after tantrum and refused to do anything with them. I realised that he’d always use my autism against me and I would always be the bad person, even when I hadn’t done anything wrong.
To this day, he blames autism for the reason I don’t have a relationship with him; however it’s his view of autism and the way I’ve been degraded and denied agency that broke our relationship. I write my story to urge neurotypical siblings to alter your views so as not to hurt your autistic sibling like I’ve been hurt.
To start with, being in crisis is not a tantrum. It is something we cannot control. Our entire nervous system becomes so overloaded it’s like a million explosions going off at once. It’s terrifying and painful, which is why we cry and scream and fight. Please know: If parents are giving your autistic sibling comfort items or putting on their favourite show to regulate them, it’s not because they’re getting their own way. It’s so they can come out of a crisis safely, and lessen the pain whilst the mind and body regulates.
Autistic people will struggle with what neurotypical siblings find easy. Whilst my brother could spend hours at a bar, I would be overloaded within an hour and be in immense pain. What neurotypical siblings might see as their autistic sibling spoiling an outing is really just the outing not being suitable for them, or they’re not given the tools to cope in a noisy, busy place. If you took the time to know what triggers a sensory overload, what can help with a sensory overload (ear defenders, fidgets, handheld games console, snacks) and how quickly your autistic sibling’s social battery can drain, then you can plan an outing that will suit the two of you, and get to spend time with each other.
Whilst neurotypical siblings are out making plans, getting on with life and being spontaneous, our life is infinitely more complex. We have to navigate a world where we are judged and face ableism most days, where we have to mask our needs to fit in and where very few people understand the real us. We have daily pain, extreme health issues, low energy, and constant sensory issues. Conversations need to be scripted, we have to try to navigate constant schedule changes, and barely anything makes sense. It’s like living a life on a boat where the compass keeps breaking and tidal waves crash down just as soon as you’ve got back up again.
To do all that without your sibling’s love and support? It’s devastating.
My advice to siblings would be, please don’t see autism as a thing that is hanging over your family. We are the autistic ones, autism is who we are, and we are people who deserve love and acceptance without having to look at our sibling and know they dislike our genetics. I completely understand how challenging and frustrating it can be, but it’s also frustrating and challenging to live as an autistic person—and it’s made even harder when you don’t have the love and support of your sibling.
I am nearly thirty now, and I am doing amazing. I’ve not had a serious crisis in about four years, I live independently, and I am managing my depression much better than I did a year ago. I have a variety of hobbies and interests and I’m a very caring person, and all of this is because I’m an autistic human being, not despite my autism. Unfortunately my brother will never get to know me like this, and that is my burden to bear. My only hope is that some good will come of it, and more neurotypical siblings will understand their autistic sibling better.
