By: Eileen at The Autism Cafe
Why is this even a taboo thing to say?
The truth is I wish Charlie didn’t have autism. There, I said it. It’s not politically correct, but I know that many autistics, siblings, and caregivers feel this way too. And before you go there, wishing our children weren’t disabled is not related to the love we have for our children. It’s because of how much we love them, that we hurt for them — often with them. Why should I wish for Charlie the suffering and struggles inherently linked with his severe autism?
I’m familiar with some of his struggles because of my autism, but most are foreign to me. I can’t pretend to know what he’s going through just because we share a diagnosis. Autism is a broad spectrum. I’m level 1, and he’s level 3. Why would I wish for my son to not be able to communicate beyond basic needs? To not be able to talk? To be aggressive toward others and himself, often without a known reason? Why would I want him not to have a sense of danger? To not be able to live an independent life? This is what autism is like for Charlie, and many others.
Why should I wish a lifelong disability on my child?
Would you want this for your child? For yourself? Of course not. Now think about it from Jude’s perspective. All he’s ever known is life with a brother who breaks his things, can’t really play with him, and cannot speak, often screaming and hitting him in its place. That’s our reality. Autism affects the entire family, and, well, maybe there could be some upsides, but they’re trapped in Charlie’s head because he can’t express them. You very well may not have been aware of this common reality of autism. This largely is not what the media shows you. It’s a lot less inspirational than “autistic 20-year-old graduates from Harvard.” But this is the reality of Autism for many families.
The loudest voices on social media forget the severe side of the autism community. They ignore those who need the most support and acceptance. They often forget both those who live with severe autism and their loved ones. We are the forgotten ones. Please, when you read a post from ActuallyAutistic on the internet, remember that they speak only from their perspective, the perspective of an autistic person who has the luxury to be able to advocate for themself.
This post was originally featured on Eileen’s blog at www.theautismcafe.com
I’m glad you brought up this topic. Our families were initially puzzled why we wanted to pursue a diagnosis for our son…their perspective was “why invite trouble?”…or “ignore problems and they might right themselves”. I have 3 daughters (1 possibly on spectrum) and they all have different reactions and relationships to their brother: the eldest sister (probably asd) is very close with him, the middle sister enjoys him in small doses but is wary, and the youngest sister is scared of him. As their mother, I have to say with honesty that our asd son got almost all my attention as they grew up. There is a pocket of terrible guilt inside me, but I don’t open it – what good would it do? He needed our focus. Yet so did my girls.
The other reaction we have gotten is “why did you have another child after having the one with asd? Isn’t there a significant % increase in the chances of having another with asd?” I guess I had no idea how hard having the one with asd would be – this is my first time at the rodeo, after all.