Dear Autism Parents,
I don’t know what it’s like to have an autistic kid. There’s a good chance I will in the future since there is definitely a genetic component to autism, but at the moment, it’s not an experience I can fully understand. I get that it’s hard – there’s things you have to cope with and learn that you never expected to have to cope with or learn when you decided to be a parent. And to the good parents, guardians, and family out there, you are absolutely invaluable. Really, I mean it. I realized as I was writing my last post about Disney that the reason I don’t have as many sensory issues as I might have otherwise is that my family, in providing good support, created a mobile sanctuary. These were my safe people. Safe people function kind of the same as a safe space. They provide comfort simply in their vicinity. They empower me and make it possible for me to do things that on my own I simply can’t. Their words and attitude towards me are vital in providing that support. I got messages like, “You are capable of so many great things”, “I know you can do this”, and “it’s okay to be yourself” throughout my childhood. And if I couldn’t do something, then “that’s okay, do you want to try again?” along with “Without failure, you’d never have success,” helped to pick me up and encourage me. These are good things to hear, said to me by a truly awesome ‘autism mom’ who never even labeled herself as such (I think the label is slightly problematic, but that’s a topic for a different post: suffice to say, if parents have a kid who’s deaf, they don’t call themselves ‘deaf parents’ because they themselves are not deaf). She was just my mom, and that was what I needed.
Bad things for a kid to hear are unfortunately posted in almost every single ‘autism community’ comment section I’ve ever seen by the very parents we depend on. There are tons of comments about how autism ruins lives and destroys families, or that it’s simply such an awful thing to exist. Some parents do reprehensible things like recording their child during a meltdown without permission – an extremely vulnerable, sometimes terrifying episode that is emotionally tumultuous – and publishing it for the world to see. They talk about cleaning up a teenager’s fecal matter, as if it’s okay to discuss the very private bathroom difficulties of someone else who’s already dependent and vulnerable. There was even once a video made of an autism mom talking right in front of her kid about how she fantasized about killing herself and her autistic daughter, and only didn’t because she had one “normal” child. And they constantly insult, block, and put down adult autistics.
There’s a rift between autism and autistic communities. One is made up mostly by people who know autistics, the other is made up by autistics themselves. The first seems to think that the latter standing up for themselves is some sort of crime. (Generally speaking – there are those out there who stand up for autistics, but they’re unfortunately not as loud.) For something as simple as saying that I think that those of us on the spectrum should be able to decide for ourselves how we’re referred to (autistic vs person with autism), I was told by a self-proclaimed mother of an autistic boy to “kindly fuck off and shove your judgement up your arse!” This was followed up with, “I couldn’t care less what you think… I don’t care what you have to say.” This isn’t even unusual. Everywhere there’s autism parents online, there’s a good amount who say and think exactly that. They treat autistic adults like we’re monsters out to get them, when we just want to say how it is to actually be autistic in hopes of autism parents doing well by their autistic children. When autism parents internalize the idea that autistic adults are bad, the message they’ll end up sending their autistic kids is that they’re bad. If a mom complains about how autism has ruined her life, then her kid hears that their existence has ruined her mom’s life.
And contrary to some people’s opinion, a lot of us do understand. Even those who are non-verbal can still be capable of understanding. Responding is the difficult part. And in understanding, we can internalize at a young age your frustrations and anger, and feel it’s not directed at, say, wishing you had more energy to keep up with your child, but rather at the fact that your child is autistic. That there is something wrong about the way we are that makes your life worse. That our existence is a burden, and you resent us for existing.
I think that even if you never flat out say these things to your child, but you say them to your friends or to strangers online, it’s still in your mind. It’ll subconsciously reflect in your behavior at some point and harm your child. I hope none of the autism moms who insult people like me online want to harm their children. Yet… they see no problem in harming other autistics, and try to discredit us whenever we speak.
They tell us that we, autistic adults, are nothing like their kid, so we’re wrong in everything we say. Of course I’m nothing like a four-year-old. I’m twenty-four. What neurotypical twenty-four-year-old is just like a neurotypical four-year-old, and why are neurodivergent twenty-four-year-olds expected to be just like neurodivergent four-year-olds? We’re what they grow up to be, and have plenty of insight that could help you and your child if you’re willing to listen to us rather than insult and degrade us (I’ve seen some stoop so low as to call us brain-damaged R-words for daring to disagree). We don’t stop being legitimately autistic when we’re older. Also, there’s a very good chance that your child will grow up to agree with the things that those who are autistic adults say. Children don’t stay children forever. Insulting autistic adults insults your child’s future.
If an autistic adult has advice, or says that you might not be doing something right, don’t act defensively and lash out – even if said autistic adult doesn’t word things in a perfectly tactful manner. We’re autistic: social communication isn’t necessarily our forte, and it gets frustrating trying to teach neurotypicals the same thing over and over, so we might be a little rude once in a while, but generally mean well.
When an autistic adult shares information, use it as a resource and gather that information. We’re on your side in that we just want what’s best for the next generation of autistics. If someone who’s autistic tells you ‘Traditional ABA therapy is compliance training that is torture for us – I know, I survived it’ don’t shout at them and rave about how it works because your kid can hug you without screaming in pain now. Consider what they’re saying. Maybe your child shouldn’t be forced to hug anyone if their initial reaction is to scream in pain. For more on why compliance training and forced physical contact is harmful, see my post on sexual assault: somegirlwithabraid.wordpress.com/2017/09/18/sexual-assault-autism-and-the-case-for-comprehensive-sex-education-for-autistics-and-the-disabled/
Most importantly when interacting with autistic adults online, think about the people on the other side of the screen. For me, there’s a level of sheer anxiety when I comment on autism online, because I just know that there’s a good chance some autism mom will rise up like a sea serpent and try to drown me for daring to sail in waters she sees as her territory and no one else’s. Don’t be a sea serpent. If you can’t see us as people worthy of respect, then remember we’re some Autism Mom’s kid. Think about how you would feel if you found out that a group of people ganged up on your child and cursed them out for daring to have an opinion and be autistic at the same time.
And think about what your child might think of you when they get older, log onto facebook one day, scroll through your old conversations, and find you telling an autistic adult that they’re not worth listening to because they’re just a brain-damaged r-word. Your child will become us. They’ll understand that you stood against us – against them. They will feel betrayed. They will understand that you care less about their struggles than you care about your pride, and that you are the cause of some of their struggles. They might even believe that you don’t genuinely care if they read that you said to an autistic adult, “I couldn’t care less what you think… I don’t care what you have to say.”
I have wonderful parents who never insult me or other autistics. They encourage me and don’t see me as a burden. Sometimes I have disagreements with them, but overall, they’re pretty awesome. Be the kind of parent that an autistic adult son or daughter can be proud of and think well of when they’re grown.
In my opinion, the only people who should rightfully get a say about autism and how it’s treated are autistics. We know what the experience is like, and those who are not autistic do not. They can’t understand it the way we do. Meaning well isn’t enough if someone is doing something harmful. Listen to what we have to say. Read what we write. Try to understand our perspectives. Don’t shut us out and silence us. Don’t hurt us. You’re only hurting your own children.
Thank you for your time.
An Autistic Adult
Are you autistic? Have you encountered these sorts of parents online? Would you like to share your experiences and say what you would like them to know? Comment below.
Alternatively, are you an Autism Parent, or other member of the Autism Community (aka, non-autistic people involved in the lives of autistics)? Are you willing to stand up for the Autistic Community by supporting our voices and agency? Comment below.
Like, share, comment, and/or follow to show support! You can also find me on facebook as Some Girl with a Braid, or on Twitter @AmalenaCaldwell.