I wish my son didn’t have autism
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.
3 Comments
solangel
2022-11-23 at 3:44 PMHello Eileen,
My son also has autism and I totally agree with you in not wanting many things the diagnosis brings to the life of our little gifts from heaven . As a mom I often feel guilt when the thought of no wanting my only son to be autistic crosses my mind. As the years go by and as a mom I wait for the little milestones most parents talk about my feelings get crush knowing I will not experience them but then right after , seconds after I get the sadness of knowing my son will never experience that either .
Brandi Pinsker
2023-07-07 at 1:53 AMOMG! Thank you for writing this. I can’t believe I haven’t seen your website before today. I’ve been saying this for years and feel like the only person who feels this way. I hate my son’s autism and wish desperately for a cure. There’s no such thing as the world bending to meet him. Thank you thank you for writing from our perspective!
Colleen
2023-11-25 at 2:06 PMI feel the exact same way and don’t know how much more I can take.