Let me just put this out there: don’t detail your disabled child’s bathroom struggles online or in print. Or anywhere. Unless you have their explicit, informed consent, don’t even think about publicizing it.
Warning about the tone for this post; I’m pretty angry. I wanted to finally sit down and write about what it’s like to travel to a foreign country as an autistic (no idea when I’m going to be in the mood to write that at this point), but there’s a new terrible hashtag full of ‘Autism Moms’ (and probably a few dads, but it really is majority moms) spouting nonsense, harmful debunked conspiracy theories about vaccines, insulting autistic adults, and detailing how they never wanted to take care of a disabled child. So I’d like to address just one aspect of this, one that is far too common even beyond the anti-vax crazies. Here it goes.
When an older child wets themselves in public, they don’t want the whole world to know. Yet, there’s a certain brand of ‘Autism Moms’ out there who feel it’s a badge of martyrdom pride that they cleaned their child’s waste.
Recently, one such mother attacked me because she believed that I don’t know anything about autism and specifically severe autism because I’ve never had to deal with an eight year son old pissing himself in public like she has.
Sure, I haven’t. I haven’t had a kid. I’ve helped with some children of others who have had this issue, but I haven’t raised them – and I will not name or indicate their identity because I value their dignity and agency.
At the same time, this woman has never been autistic in any way. Just because I’m not a parent doesn’t mean anyone gets to dismiss everything about my knowledge just because I don’t want to disclose when the last time I wet the bed was. That I don’t tell the world details about what my parents may or may not have had to clean up at what points in my life. For my reaction to this sort of silencing technique (You’re nothing like my child! You’re too high functioning! You can talk, so you’re not really autistic! This is my domain, RAWR!), see my post A Letter to Autism Parents from an Autistic Adult.
I also have a question for you. Why would you ever tell anyone about such a private moment in your child’s life?! You think anyone wants to stand there soaked in their own waste due to fear or inability to control themselves and have the whole world know? Who benefits from the world knowing about this private, scary, humiliating moment? Certainly not your child. You, Autism Mom. You get pity points. Which, I fear, is all you want from your child anymore, because too many of you have written off your children as forever doomed, damaged, and practically dead – leading to irreparable damage to the children you’re supposed to treat with love.
I was in a class once where I was one of the better students. The teacher asked me to lead the beginning of class, because she needed to help another student. I didn’t know what the other student needed help for, but since the class was a subject I was confident about and I was friends with the other students (small class), I was okay with taking over and helping. I realized later as the teacher quietly helped and cleaned the floor that one of the children [neurotypical, to my knowledge – if that matters at all] who most would consider too old for such a thing had had an accident. And it was private. No one else realized what had happened. The teacher handled it right.
Parents, here’s what you do if your child struggles with bathroom issues:
- Clean it up
- Get new sheets/clothes
- Wash your child
- Put your child in new clothes
- DON’T TELL EVERYONE
Seriously, don’t. Us older autistics generally don’t want everyone to know when we stopped wearing diapers. And if you ask, I sure as hell wouldn’t tell you if I waltzed out of the womb fully potty trained or if I wet the bed yesterday because it is no one’s business but my own. You are violating your child’s right to privacy and agency by telling the world about these things. And it’ll follow them.
“It won’t matter!” you might say. “My child is non-verbal and will never be capable of anything! The world needs to know my struggle!”
Sure, maybe your child is non-verbal, incapable of independent function, and difficult to understand/manage now. But you know something? I’ve been reading plenty of writing from autistic adults who were there. They were non-verbal for years. Some still are. Some were institutionalized. Some probably were in diapers. They were told (or more likely, their parents were told) they would never be able to live independent lives.
And where are they now? Well, some of them ARE living independent lives, or more independent lives, decades later. They can learn, adapt, figure out how to navigate a very hostile world. (Please note that I am not attempting to speak for these people, out their individual struggles, or single anyone out. If any autistics who’ve experienced these things wish to comment their stories or link to their own articles/blogs/videos about their experiences, I more than welcome it. I want your voices heard.)
Back to Autism Parents: If your child finally manages to get themselves a job interview, and their potential employer does a search on them, the last thing your child will want their potential employer to find as a search result is a book by their mother with chapters dedicated to excruciating details describing what it was like to clean their waste when they were teens. “Was afraid of hand dryers at age eight and pissed themselves in public” makes a bad thing to have in mind when reviewing someone’s resume.
Or what about if they try dating at age forty? Their potential date googles them and the first thing they find is “My child constantly wet themselves until they were thirty! God, I just hated having to clean up their feces that specific very embarrassing moment when they were eleven and didn’t make it to the bathroom! Their crying was so annoying, this wasn’t what I wanted in a child! Here are all the details on that!”
Do you think that makes for good dinner conversation?
This extends to all other personal information that Autism Moms like to share about their children without their children’s knowledge or informed consent:
- Bathroom struggles
- Porn viewing habits
- Text messages
- Grooming struggles
- Executive functioning struggles
- Videoing/describing meltdowns in detail
- Anything personal and private about their children
Autism Parents, just stop this. You should love and care for your child enough that you don’t want to humiliate them. You sharing all this private information is not helpful, it harms autistics. It violates us.
Look, no one thinks it’s fun to clean up someone else’s mess. And it’s probably not what you thought you were signing up for when you had a kid, and you want to vent. Vent privately, not online for the whole world to see. Remember that this is the child you have, and you should love their autistic selves. Remember that your child is just as human as you, and treat them with dignity. If you think it’s a trial for you, just imagine for a moment what it’s like to experience what your child is experiencing for yourself. If you had a sudden case of food poisoning and made a mess all over your chair and the carpet at dinner, how would you feel if your mother took a picture of it and told all 500 of her Facebook or Twitter followers about what a burden it is to put up with a daughter/son like you?
Practice a little empathy. You’re supposed to be the ones who are good at that, right? Sharing this nonsense harms everyone:
“I’m so happy my mother decided to share private, humiliating details of my most vulnerable moments because she wants to use my struggles to point the blame of my existence at anything other than her own genetics!” – said no child ever.
We are not ‘vaccine injured’. We are not ‘stolen children’. We are not ‘practically dead shells’, and we are not ‘missing’. We are the result of your genetics. We are your children. We are adults. We are part of this society. And we deserve basic human dignity. You owe your child respect.
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