Don’t forget those with severe autism

not all communication is verbal

I wish my brother didn’t have autism

For his sixth birthday, Jude wished Charlie didn’t have autism. I shared a video of the moment, and though a majority of comments were positive, I got a handful of hateful comments. The truth is, I too, 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 quite the opposite. 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.

Who would wish a severe disability on their child?

Would you want this for your child? For yourself? Of course not. Now think about it from Jude’s perspective. He turned six a few days ago. 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.

Don’t forget about severe autism

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.

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  • Reply
    2022-06-19 at 11:57 PM

    Thanks for writing this. You are quite frankly the first person I’ve seen on this journey to talk a modicum of sense. I’m very, very burned out with people who realize their diagnosis at middle age thinking they can comment on the morality my anxieties about my nonverbal toddler. I have been terrified he won’t be able to speak since the day he was diagnosed, and have been chewed out over and over, as if I have talks with him about his “inadequacy” and am not simply a concerned parent with very little family in the country who can help when I am gone. Apparently I’m grossly ableist, yet no one has a better answer than that for a very realistic scenario they won’t have to ponder. I wish mine didn’t have it, either. Not because he isn’t loved, but because I won’t be here forever to keep him safe. Because he misses a lot of cool stuff, and the stuff he does get is often twice as hard. Because sometime this week he hurt his leg and can’t tell me what happened and I can’t figure it out. I accept him, but I think the rest of the autistic community can accept that it sucks that his foot hurts and we can’t do squat about it and that sucks.

    Thank you.

  • Reply
    2022-08-02 at 2:39 PM

    I never know how to describe my son – I try severely autistic or profoundly autistic. The reality is he is in his late 20s and non verbal. He lives in part of a house and is supported 1:1 15 hours a day. When he’s asleep he doesn’t get out of bed but there is a waking person in the house. He understands most of what we say to him and is aware of what goes on around him. He likes going to football matches, rock music and most music genres and eating out. He has learning difficulties and can neither read nor write. He has no interest in computers. He loves going to the movies to see action films and Marvel etc. He has medication to calm down some of his wilder impulses so he can be taken out in the community. I love my son but he’s lived away from me for 11 years now and we go to football together with his twin. I would defy anyone to say he’s not severely autistic. (Sorry for the length of post)

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