While browsing TikTok, I came across a video showing what it’s like to have an autistic sibling. Of course, this paints a picture of a neurotypical sibling having a harder time dealing with an autistic sibling. I’ve seen movies like this many times, always with neurotypical family members being “victims” of autism.
I’d like to share my story of what it’s like to have one neurotypical siblings and how challenging it 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 is different in many ways. He had a huge circle of friends, was very independent and extremely sociable. As he got older, he stopped seeing me as a sister and started seeing me as a diagnosis.
If I was ever in a crisis, he would complain that I ruined everything with “tantrums” and that I always got my own way when my parents calmed me down or met my needs. He would never let me hang out with him or his friends because I was too weird and if I ever started talking about my problems, special interestshe pulled our faces closer to those around us until I felt too uncomfortable to speak.
His view of me never changed, even as I became an adult. He wouldn’t let me go anywhere with him in case I had a “tantrum” and he wasn’t interested in finding out what I liked or what made me joyful. To him, I was a whiny, whiny brat who will forever be remembered as a five-year-old who couldn’t cope with the world.
The final straw came when we went to Paris for our dad’s 50th birthday and his wife ruined our day at Disneyland by throwing a real tantrum (ironic, I know) because she didn’t like the holiday. They both lied and blamed my autism, saying I had tantrum after tantrum and didn’t want to do anything about them. I realized that he always used my autism against me and that I was always the bad person, even if I didn’t do anything wrong.
To this day, he blames autism for my lack of contact with him; however, it was his view of autism and the way I was belittled and denied agency that ended our relationship. I am writing my story to encourage neurotypical siblings to change their views so as not to hurt their autistic siblings the way I was hurt.
Let’s start with the fact that being in a crisis is not a tantrum. This is something we cannot control. Our entire nervous system becomes so overloaded that it feels like a million explosions at once. It’s terrifying and painful, and that’s why we cry, scream and fight. Please know: If parents give your autistic sibling comfort items or turn on their favorite show to regulate them, it is not because they are getting their way. This is intended to aid you get through the crisis safely and ease the pain while your mind and body regulate.
Autistic people will struggle with things that are basic for neurotypical siblings. While my brother could spend hours at the bar, I would be overloaded and in extreme pain within an hour. What neurotypical siblings may perceive as an autistic sibling ruining a trip is actually a trip that is not suitable for them or does not provide them with the tools to cope in a cacophonous, busy place. If you have taken the time to learn what causes sensory overload, what can aid with sensory overload (hearing protectors, fidgets, handheld game console, snacks), and how quickly your autistic sibling’s social battery can drain, you can plan a trip that it will suit both of you and you will be able to spend time together.
While neurotypical siblings plan, cope, and are natural, our lives are infinitely more convoluted. We have to navigate a world where we are judged and most of the time we face problems where necessary 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. Interviews have to be scripted, we have to try to cope with constant schedule changes, and almost nothing makes sense. It’s like living on a boat where the compass keeps breaking down and the tidal waves crash as soon as you get back to the surface.
Doing all this without the love and support of your siblings? It’s devastating.
My advice to siblings is: don’t see autism as a disease that hangs over your family. We are autistic, autism is who we are and we are people who deserve love and adoption without having to look at our siblings and know that they don’t like our genetics. I completely understand how challenging and frustrating this can be, but life as an autistic person is also frustrating and challenging – and it becomes even more challenging when you don’t have the love and support of your siblings.
I’m almost thirty years antique and I’m doing amazing. I haven’t had any solemn crisis for about four years, I live independently and I deal with depression much better than I did a year ago. I have a variety of hobbies and interests and am a very caring person, all because I am an autistic being, not despite my autism. Unfortunately, my brother will never know me this way and that is my burden. I just hope that something good comes out of this and that more neurotypical siblings understand their autistic siblings better.