So I’m a member of this Facebook group called “Ask Autistic Adults.” In this discussion group, parents of autistic children pose questions that only members on the spectrum are allowed to answer. As a result, the insight I’ve gained from some of these responses has been invaluable, and I strongly recommend it for other non-autistic caregivers. That is, so long as you can remember when to shut up and listen. Because seriously, God Bless the autistic moderators of that group, who constantly, constantly have to enforce the simple rule that only autistics may offer advice. (Neurotypicals really do have trouble with simple directions sometimes.)
Anyway, when I first joined, the guidelines were very clear: “No Autism Warrior Moms.”
I was unfamiliar with the term at the time, so I looked it up. I then learned that the vast majority of (actually) autistic advocates look upon the self-designated title of “Warrior Mom” with quite a bit of disdain.
Here are a few snippets of what I learned.
Confessions of an Autistic Freak explains it like this:
Kaylene, the author of the blog Autistic Mama describes AWMs as:
Spectra blog, meanwhile, has this to say about AWM merchandise.
Those are just a few examples. There are many, many more autistic voices out there with similar thoughts on the matter.
I am inclined to listen to them, so I reject the title of “Autism Warrior Mom” for the same reasons I would not accept a #BLM manifesto written by a white man or a feminist call to arms that does not acknowledge intersectionality: the term was developed without the input or consent of Actually Autistic people.
Yes, raising kids on the spectrum is far from easy. That much is obvious. But you know what else isn’t easy? Being autistic. And these are my children. My children are suffering, being forced to assimilate into a world that is not designed for them. It is not about me anymore. In my autistic child’s story, I am not the protagonist.
The truth is hard to swallow sometimes.
The more I think about it, though, the more grateful I am for my kids’ autism. Or, as actual autistics are teaching me to put it, the more grateful I am for my kids. Period. Because autism is part of who they are.
Seven short years ago, I started out as a pretty no-nonsense, consistency-is-key, follow-through-with-that-threat, time-out-junky type of mom. Rules existed for a reason, I was sure. Any disputes with a baby or toddler should be necessarily won by me. Because I was the boss, after all. And didn’t my kid know it. If I kept taking my baby to that mommy-and-me class that he hated with all his being, and forced him to participate, he would eventually get his shit together and like it. Because that was how parenting worked, right?
Any break in the daily routine should be avoided at all costs, as it could lead to a total and utter collapse of all order and standards. My apartment was clean. Dishes never even sat in the sink for 5 minutes at a time. And nap time was not optional. Not ever. Did I mention my apartment was actually clean?
Now let us all observe a moment of silence now for that life, for that belief system, for that mom. Because they are all so very fucking gone now.
In short, my kids wouldn’t let me be that person anymore. And for that, I am so grateful to them I could cry. If their meltdowns, their refusal to be “disciplined,” their inability to respond to consequences hadn’t rocked me to my absolute core, I would never have read books like The Conscious Parent, The Explosive Child, and Untigering.
I wouldn’t have had to acknowledge and challenge my own ableism, so my parenting style would never have become more gentle, more inclusive, more peaceful.
I would never have given in to the chaos, and let it transform me. Let it mold me into something better.
And my apartment might still, actually, be unnaturally, creepily clean.
Autism acceptance and autism awareness are not the same thing. Acceptance is roughly a million times more difficult.
Awareness is saying that although the kid with a blue halloween pumpkin doesn’t look so handicapped, she is actually different. Awareness is acknowledging the ways in which she is not like me.
Acceptance, however, is admitting that she is, in that she has the the same rights I do to freedom, prosperity and happiness. And if the system is stacked against her unfairly in that respect, then that, well, that needs to change.
Awareness is acknowledging that another reality exists. Acceptance has been dismantling every aspect of my own.
And there are no breaks. The acceptance I know, must be relentless. I have to resist a goal-oriented ego, which often forgets that my children are unique souls, not mere reflections of my own worth as a parent. I have to fight my own insecurities, which want to compare my kids to each other and to their peers. I have to battle anxiety about my children’s futures, so that I may be with them in the moment. And I have to fight the rage that wells up in me when nobody responds to, or even seems to hear a single word I say.
Oh shit, there I go sounding like a warrior after all. But my battle has nothing to do with Autism. Rather, it confronts my own Ableism.
“Ableism Warrior Moms.” Now that’s a tribe I might be able to join.