Why is it taboo to wish your child wasn’t disabled?
My inbox has been getting absolutely bombarded because saying I wish Charlie didn’t have autism means I wish I had a different son or that he didn’t exist.
No. Charlie without autism would still be Charlie. A happier Charlie.
Most of us accept the need to treat stubborn cases of anxiety, depression, and self-harming with meds. Does that mean we wish these people didn’t exist? Of course not.
Why are the often debilitating symptoms of autism a struggle we’re not allowed to want gone? I’ve seen cases of someone’s autism symptoms merging with their personality, blurring the line between symptom and personality trait. In many instances, it’s unavoidable, because symptoms can be so deep-seated that they can’t be unwoven from the autistic who experiences them. But that’s not always the case. It’s a thought, an idea I still need to think through more and let marinate. I know that some people with autism will take offense to it.
I’ve come to feel that with Charlie, autism is a cage in which he’s forced to live. Occasionally, I get a glimpse inside and experience a moment where I see the boy who’s been stuck there since toddlerhood, unable to connect with so much of the world. For those of us who’d describe a loved one as afflicted with autism, why can’t we ever wish for its effects to be gone? Because the media likes inspo porn? Because one in a thousand autistic people have some insane skill with no downside? The spectrum is broad. Sometimes, autism can be severe. Severe, debilitating, and inescapable. Charlie does not have a mild case. He’s severely disabled.
Charlie without autism would still be Charlie.
Without autism, Charlie would still be the same little boy, but one who could communicate his feelings. He’d still be a little boy who loves playing with water, being wild, and eating candy.
But instead of risking his life by jumping into a pool without knowing how to swim, he would be swimming with his friends.
Maybe instead of running in front of cars, he’d do it on the track, for his team at school.
Maybe instead of only communicating almost solely about what food he wants, he’d share an idea he had. Or a joke. Or he’d ask me something about the world. It’s a sad thing, to raise a child who not once has asked me about the world or about life.
So no, Charlie wouldn’t be a different person without autism. He’d be the same Charlie, without the struggles, the limitations, the cage that parts of him were never allowed to escape and grow freely.
It’s all hypothetical, of course — there’s no cure for autism. Maybe the words “I wish he didn’t have autism” upset you. But I hope you might understand more how severe the struggles can be for many on the spectrum.
My autism isn’t the same as Charlie’s. Charlie’s autism isn’t like the quirky genius on TV’s. But Charlie would still be Charlie without it. Maybe even a happier Charlie. But probably a Charlie who would have a more rich, varied, and fulfilling life — and sometimes, still, I miss that little boy I’ve never met.
Read more blog posts of mine about autism here.
5 Comments
Stephanie
2022-06-25 at 1:54 PMI absolutely love your views on autism. I agree with everything you say and I also also UNDERSTAND what you are referring to whenever you wish Charlie didn’t have autism. I wish Danny (my son) didn’t have it but you know what? It makes them who they are and you wouldn’t change it for the world. Being a parent means wanting the best for your child. Don’t let these misinformed cyber bullies waste your time. They don’t have a clue what it’s like to walk in YOUR SHOES and they should keep it that way!!! I’m a huge fan of yours and will continue to be! Squeeze Charlie as tight as you can for me! Love you mama!!!
Tim
2022-08-26 at 6:32 PMThis made me very sad. Not because anything was offensive, but because our 3 year boy has not said a word yet. He has never looked me in the face and said Daddy. He has a tremendous personality, and is smart, but I wish I could conversations with him like I have with our 4 year daughter about things. I wish he wasn’t autistic either.
Cendu
2022-11-10 at 9:41 PMI would think every parent with an autistic child must have this thought at least once. I know I sure do. He’s my first baby and of course we never knew what was in store for us. I resent the struggles sometimes and when I see a child telling their parents about their school day I wish I could hear about my sons day too. But all that never ever means I don’t want him or don’t love him fiercely. It just means we’re all still figuring it out as we go and sometimes I long for things to be easy and simple. I wish we could join the soccer league or whatever activities he might likeinstead of spending all our money on therapies etc. I think we’re allowed to feel how we feel without all the judgement. You’re doing great mama!
Raysa
2023-07-20 at 11:54 PMThank you for this. I often have the same thought about my son who has a very difficult time expressing himself and wants to connect with other children but doesn’t understand how to. I feel sad and angry so much of the time.
Bridget Grenolds
2023-09-19 at 11:58 AMLike you, I perceive the cage of severe/profound autism that traps my 6yo grandson and it breaks my heart because I also see how much he wants to break out of that cage and interact with others, especially his peers.
My grandson has been working very hard to acquire the keys needed to open some of the dozens of locks securing the door that keeps him trapped in his cage and we celebrate each key that he obtains (noticing there’s a world outside of himself, learning to use an AAC device to make requests, making eye contact to engage peers to play chase, and watching others swim and then challenging himself to put his face in the water).
My grandson is amazing. His efforts are awe-inspiring but heartbreaking at the same time because, no matter how hard my young grandson works and despite the number of keys his efforts may acquire, he will still remain in a cage because there is one lock that has no key until a cure is found for autism.