“Witness Part 2”
Recently I have been having way too many encounters of the unwoke variety. They make me question whether it is really worth talking about autism with people who aren’t autism parents themselves. Self censoring sometimes feels self preserving, doesn’t it? Insert the requisite hashtag here, that it is not all the people; I am not in the mood to write that out in detail. If you are not culpable, then don’t take it personally. But not being able to say what my life is like is a kind of suffocation. Perhaps people like me should stick to discussing it in support groups and on Facebook with likeminded parents. But I would like to believe that erasing ourselves from the company of people we love is not wholly necessary.
I have written on the subject of this sort of policing before.* But the reminders of how people perceive us are so multifaceted that recent happenings did not fall under the rubric of that previous blog post. So here we go, a different angle, a renewed parry and thrust. If you are up for some perspective, I appreciate your willingness to engage.
It is really simple: We know everyone worries about their kids. We also know that neurotypical kids can fall into all sorts of academic, physical, and emotional morasses, or develop serious illnesses which require lifelong care. But when we dare to express apprehensions for our kids, we are not competing with you, or trying to diminish your own parental struggles.
So please stop saying to us “We have those fears too. It’s not just autistic kids. NORMAL kids have problems too.” We know, but you need to listen to yourself.
First of all, NORMAL? You have to unpack that word choice yourself because I am not taking that journey with you. It’s too much emotional labor which I cannot be expected to perform.
Most of you know that I have teenagers now. They are not little kids anymore, but one of them is severely developmentally disabled enough that the daily challenges SOUND like the stuff you used to deal with when your own children were toddlers and preschoolers.
But sounding like it is not equivalent to being it. So even though you used to be afraid of losing your child in a public place, the impulse control eventually developed in your child, did it not? Now, if they run from you, God forbid, it is for entirely different reasons that therapy might be the best place to explore, and I mean that sincerely, not snarkily.
Chasing after an eloping teenager is leagues away from being a younger parent chasing after a toddler. I would really hope you try and picture what it is like for, say, my 53-year old husband, to take off into traffic after a 13-year old boy-man. Now think of me doing the same. And even if I catch him, sometimes I cannot keep hold of him. He is now stronger than I am. If he doesn’t want to be somewhere, like a doctor’s office, I will end up defeated. And judged by everyone there.
I was discussing Project Lifesaver** with a medical professional the other day—it is an electronic monitoring device for cognitively impaired adults and children who have a tendency to wander from home—because he asked if I knew of any helpful resources he could pass onto other parents. Imagine my horror when he began to say that the device should be available at the same discounted cost to all families because all kids wander. I don’t care to get into how silenced I felt; but I will say that if medical professionals think this way, ie. that services available to our autistic kids are somehow taking away pieces of the pie for Normal People, then it is hardly shocking that we get so much judgment and carping from everyone else.
Insert any other topic here: Oh, every child has feeding troubles; Oh, every child needs alone time after school, sensory stuff is not the only reason, you know; Oh, my child sometimes doesn’t talk to me either, it’s not just your nonverbal kid; Oh, every parent worries about adult kids. I am amazed at how little exposure people have to our daily realities. It is a luxury to imagine that a lifelong cognitive impairment, often accompanied by baffling co-morbidities, is somehow a resource and attention stealer from your neurotypical darling’s journey.
But it does help me see very clearly the reason for the general societal indifference. We are not just up against potentially violent or bullying external forces. We are also facing people who claim to love us but really do not see outside their own spheres of interest. If you have teenagers (NOT toddlers) and you are able to work at your desk, change your tampon without rushing frantically, take a shower, clean the garage, or do pretty much anything you would do at home without having to do those things only when your spouse is home, or when your child is deeply asleep or away at school—then no, you do not have the same life as we do, and should probably get on your knees and be thankful for that. Similarly, if you have never had to tackle autism-related feeding crises, and years of further treatment, please please consider what you mean by diminishing the PTSD and terror my husband and I still feel in our own ways.
Recent convos have also involved being compared unfavorably to other autism families that people know, and then, no surprise, it turns out the kid in question is more mildly autistic than A. I would never have guessed! Of course, since it is probably easier to explain to and corral Mythical Other Kid, it is also easier to trot out stories about MOK because it is always more satisfying to talk of scenarios that are less overwhelming. If you don’t want to face up to the fact that I, your friend, have a family situation which your homilies cannot solve, it’s probably best we just don’t talk about autism. I cannot walk the path of homilies with you, but I wish I could, because then I would be assured of keeping more friendships than I have lost all these years, wouldn’t I?
Talking about autism does not equal asking for advice. I hope you know that.
If you’ve read this far without spluttering about all the caveats that came to your mind, and thinking how ungrateful I sound, thank you. I am deeply aware of how fragile my relationships are, and cover my mouth more often than not so as not to burn every bridge that still connects me to Neurotypical World. But the price of belonging is sometimes so steep that I want to withdraw all the drawbridges and let the moat shimmer undisturbed between everyone and us.
Think about why people expect us to sound more grateful. Why the price of staying connected to all of you should be autism erasure.
I do want to say how thankful I am for young people. In recent years and months, people younger than 35 seem to have demonstrated a greater wokeness and given me a lot of hope. And I am seeing that especially in the LGBTQ communities we are fortunate to inhabit. I learn a lot from their deeply felt desire to birth themselves into more loving worlds. They will lift us all up with them. But we have to accept them for who they are without caveats.
The thing is, people like me are not writing just because it’s therapeutic or cathartic. It’s hideous to do this kind of writing, and renders us vulnerable to finger wagging and further distancing. But we do it because there are more of us than not, and we all live like this when we shouldn’t have to. I take a risk every time I say stuff like this. Please meet me halfway by really listening.