So you’re a parent of a child afflicted with the deadly disease known as autism… er, no, here’s the first error. You’re the parent of an Autistic child, an Autistic child’s parent, until that child tells you to call them something besides autistic.
Let’s try that again. So your kid is autistic. You want the best for them, right? If you don’t, kindly step off to the side until the end of the post, where I’ll have a special message just for you.
You. You want the best for your kid. You want them to grow up into a world that loves and accepts them. You’re probably wondering, “how do I do that?” Or, hopefully you’re wondering how you do that.
…what, you mean you’re already trying to do that? And you didn’t consult and autistic adults first? Okay, we have to start from somewhere below step zero, then. We’re gonna have to unlearn some things.
Step Negative Three: Understand that your child is not wrong.
There is nothing wrong with your child. They are not broken, they are not less then, and they are in fact your real child. They were not stolen by a changeling, or ruined by a vaccine. This is a short step, because literally all it is is saying to yourself, in all honesty, “This child is my child, and they are not wrong.” But apparently that is super hard. Super duper hard.
Step Negative Two: Embrace the Autistic Community.
The autistic community is not some strange realm full of evil spirits and vaccinated, swearing shrews. It is literally the group of people that your child will grow up to be a part of. We are your child’s future extended family, and that is *not* hyperbole. We are the ones who will actually get your child, who will actually understand your child.
We are the ones who understand what it was like being Just Like Your Child, as they are now. We know what they’re going through because we went through it. Some of us more than others with respect to some children more than others, but as a whole, as a community, we went through being Like Your Child.
So we’re the ones to consult when you don’t know how to properly serve your child. When they can’t tell you what they need, what they really need- not because they’re autistic, or non-vocal, but because, being a child, they have not had the experience to know everything that they need. Now, that said, if your child actually communicates to you that they have a need, you don’t have to ask us, because we’ll tell you to listen to your child. The order of who knows best when it comes to access needs is, more or less, first your child, then the Autistic community, then non-autistic people (you).
Yes of course, if your child asks for unreasonable needs like “I need to run around in traffic,” you can say no. That’s unreasonable. But “I can’t eat that food because I gag upon putting it in my mouth,” is not unreasonable. And if you’re wondering what’s reasonable and what’s not…
Step Negative One: Stop filming videos of your child in the bathtub.
No seriously just stop. Or talking about how they poop, or divulging huge secrets about mega-meltdowns they have, or taking videos of them shutting down. All of those moments are private moments, and until they themselves are old enough to communicate about those moments first hand, they are not to be talked about. That is a huge, huge breach of privacy and trust.
Step Zero: Embrace that it is not about YOU.
It is not about you. Yes, you will have a hard time parenting an autistic child, and yes, it might be harder than parenting a normal child, but that does not make their struggles about you. Your child is the one struggling to navigate a world that they are new too. All children are struggling to do this, but your autistic child especially, because this world has been made hostile to them. Your child is the one feeling sensory overload, and having meltdowns, and you are just the spectator and the support. You are not a center of attention- don’t try to make yourself into one.
Are we good? Are you still with me? Here’s a cookie for staying through the hard part. Don’t get used to it, the autistic community doesn’t usually hand out cookies for baseline decent behavior.
Now on to the actual steps:
Step One: Know your terminology.
There is a big, gaping difference between the Autism community and the Autistic community.
The Autism community is made up of autism mommies and brothers and daddies and sisters, made up of therapists and caregivers and what-have-you’s, and whoever else finds themselves vaguely associated with autism. This community is very toxic, and likes to talk about how vaccines cause autism (they don’t) and how they can sympathize with those who murder their autistic children.
The Autistic community is made up of people who are actually autistic. We may be young or old, self-diagnosed or classically diagnosed, and we may even have autistic (or not autistic) children ourselves. What brings us together is that we are all autistic. Also, we hate the Autism Community.
The other important terminology: We, the Autistic Community, by a wide margin, prefer identity-first language. This means that we call ourselves autistic. We don’t like person-first language, which insist that we are “people with autism.” There are a whole lot of reasons why we like identity-first over person-first, but the big reason is that it seems that the further people place the word “person” from “autism” in a sentence, the further they think autistic people are from being actual, real people. See “families of children who are affected by the condition known as autism.”
Step Two: Ask the Autistic Community what they want.
Never, never ever assume what would help us or, by extension, your child. We have a phrase- nothing about us without us. It means that you should never, ever, ever make a campaign or anything about autistic people without at least consulting an adult who is actually autistic and a member of the autistic community, and honestly, that autistic person should be running it and making all the big decisions. That pretty much safeguards you from messing up and being eaten alive.
Step Three: Know off-hand the things that the Autistic Community definitely does not ever want.
There are a few things that will always make us mad.
First, talking about cures. We don’t want to be cured, we want to be accepted for who and what we are.
Second, talking about awareness. Awareness makes people afraid of us and beg for a cure. Again, we want acceptance, not awareness, not cures.
Third, Autism Speaks. Autism speaks wants to cure us all, kill us all, or make people “aware” of us. Autism speaks has no autistic leadership and is generally hateful, and I’m pretty sure has never listened to an autistic self-advocate even once. So if you want to do a campaign, don’t make it benefit Autism Speaks or a similar group. If you need help identifying good groups, head back up to step two, and avoid anything that talks about burdens or cures.
Step Four: Do the thing
Fine. You got this far and followed the rules? Make your campaign. Help us out. Whatever.
Step Five: Did you still mess up? Listen.
You probably did. Because everyone does. Now is the time to put your ally-skills to the test.
Listen to us. Listen to our criticism- which includes our anger and our swearing and our mocking- because hidden within will be kernels of truth and wisdom. Especially in the anger and swearing and mocking. Do NOT silence us, either by deleting everything or ignoring us or what have you. Face what you did, and listen, so you can do better.
Step Six: Be an ally in the interim, and while it’s all going down
Are your friends, family, and supporters insulting us? Are they, for instance, calling us “mindless idiots”? Correct them. Don’t sit idly by while people abuse us- the people you want to help- because if you do you’re making it clear that you favor peaceful injustice over loud, raucous justice being served and explained and argued. If you actually care, you’ll listen, and you’ll stop people from abusing us.
Okay? We’re done now. Now give me back the cookie. I actually deserve it for sitting here and teaching you all this for free.