Its Dangerous Neglect Of Profound Autism

Upcoming rant about the erasure of profound autism, self-advocates speaking over those with the highest support needs and the social model of disability.

Don’r erase profound autism

On Christmas Day, I received hundreds of negative comments calling me a horrible mother. Ableist, abusive, disgusting—you name it, I was it.

Why? I shared a video of Jude on his 6th birthday, saying he wished Charlie didn’t have autism. A SIX-year-old wishing his brother could play with him and talk to him instead of hitting him or destroying his toys. How horrible… amiright?

And let’s talk about Jude. How by age 6, he already knew to brace for impact when Charlie got too close. About how he had mastered the art of stopping mid-sentence when Charlie had a meltdown, knowing that’s where the attention needed to go. About how he already lived with the constant fear of something happening to his brother because he had no sense of danger. About how he couldn’t go on family vacations like his friends because Charlie couldn’t tag along and there was no one fit to watch him for extended periods. 3 years later, and things are not any better.

But he also shows extraordinary compassion. He’s learning to celebrate the smallest victories with us – when Charlie successfully uses his AAC device to communicate a need, when he has a good day at therapy. He’s developing a kind of emotional intelligence that most adults don’t have.

So when he makes a birthday wish for his brother not to have autism, he’s not being ableist. He’s being a six-year-old who wants to play catch with his brother. Who wants to share his favorite YouTube shows and Pokémon cards. Who wants to tell Charlie about his day at school and hear Charlie tell him about his.

Here’s the thing: autism, at least for those with Level 3 autism, isn’t the quirky genius of Sheldon or The Good Doctor. It’s not about “thinking differently.”

It’s 24/7 care, aggressive behaviors, self-injury, meltdowns, destruction, and heartbreaking limitations in communication. It’s Charlie swallowing screws, breaking his brother’s toys, and smearing poop on the walls.

Autism, for Charlie, is a life filled with challenges, and for Jude, it’s watching his brother struggle and wishing he didn’t have to.

The comments were insisting that if society were more accommodating and understanding, everything would be fine and that, therefore, autism isn’t a disability. Guess what? That’s bs. The most accessible, disability-friendly world wouldn’t suddenly allow Charlie to talk or play with Jude. It wouldn’t erase his need for 24/7 support or stop him from engaging in destructive and self-harming behaviors.