Sunday, January 26, 2020

How I Want People To Talk With (And About) My Autistic Son

Photo © Shannon Des Roches Rosa
[image: Photo of a teen wearing a jacket and baseball cap,
seen from behind, far ahead on an oaken hillside trail.]
Shannon Des Roches Rosa

When I was in physical therapy to rehabilitate a busted knee, the kind, competent therapists tended to make small talk—which invariably meant fielding tentative, well-meaning questions about my autistic son. That gave me the opportunity to model the way I'd like other people to talk and think about him. Here’s how those conversations usually go:

PT: “Autism. Um. That must be hard.”

Me: “Well, my son is a very awesome person. And he’s actually more easygoing than his siblings. He’s like a lot of autistic people—it’s hard for him to be in places that aren’t autism-friendly, and it can be hard for him to communicate. But he’s a wonderful person.”

PT: “That's really interesting.” (Processes what I’ve said, ideally.)

I have casual conversations like this a lot. If you're autistic, or the parent of an autistic kid, or work with autistic people, you probably do, too.

The conversations can sometimes get irritating or depressing, because it's draining to have to constantly remind non-autistic people who only know negative media messages about autism that autistic people are human, just like them.

But being human doesn't mean we're "all the same." It doesn't mean denying the realities of being autistic. All human individual realities create specific circumstances, specific needs, and so specific opportunities for misunderstanding. And bad things can happen when human beings don't understand other human beings' realities.

So I'm asking you to try to understand. I'm asking you think about how you talk about people like my son. And how you talk to autistic people, as well, because you probably know more autistic people than you think you do, given that autism is under-diagnosed, especially in women and people of color. Talking to other humans on a human level is, well, a human thing to do, because no one likes being treated badly—or even awkwardly.

And I don't expect anyone trying do the right thing to get everything right instantly, mostly because I struggle with social dynamics myself. Also because autistic people have personalities, plus there are those pesky individual circumstances, so what works for one person may not work for another. But I want you to try.

It's easier to try if you make shifts in your understanding about what being autistic means. For example, my son loves kinetic sand. He loves molding and manipulating that sand. And he doesn’t like anyone messing with that sand. I've learned that If I pinch the sand into little peaks (something I find satisfying), he will immediately push the peaks back down into the sand, where he strongly feels they belong.

Some might jump to the conclusion that, because my son is autistic, he is autistically perseverating on needing his sand the way he wants it (not that perseveration is wrong). But is autistic perseveration really the case? Don't I get agitated if my husband loads the dishwasher differently than I do? And doesn't my partner (being of a less volatile temperament than his spouse) express mild displeasure when he comes home to my unfinished projects cluttering up our kitchen counter?

Don’t we all have our own sense of the order of the world, the way we like things? That's why it's not realistic to talk about everything an autistic human being does as being due to autism. That's not to stigmatize being autistic, at all. But autistic people, like anyone, want things the way they want them.

As for talking with autistic people, I am mindful of speaking to my son with the assumption that he understands me, at all times. If he absolutely has to get what I'm saying, I will check in with him, and confirm. But otherwise, what is the harm in including him in conversations, even if he responds in his own way or doesn't respond at all? What if I oversimplified everything I said to him, with the result that he felt singled out and more different than he already does, plus missed out on a ton of information (I am the queen of info monologuing) and camaraderie? I'm not willing to take that risk.

Still, my son is probably aware that I talk differently to him than to his siblings. I am kinder, more polite, and more patient with him. But… maybe this is because, with his chill, cheerful-like-his-father personality, he is easier to be around and gives me less grief than his temperamental-like-their-mother siblings? Is that fair to his siblings, who are also human beings? I'm working on it.

Talking with autistic people in general is something non-autistic people need to educate themselves about. You may already be familiar with common guidelines for talking with autistic people, advice like don’t insist on eye contact; know that your statements may be taken literally; and don't be impatient.

But there are many other factors to consider about being respectful without being patronizing while talking with autistic people, as per Real Social Skills:
 "[S]ome nonspeaking autistic people have significantly better language comprehension than some autistic people who speak. (And you can’t tell from affect either: A student who spends all day rocking in a corner might be understanding significantly more than a student who spends all day sitting still at a desk.) 
"Autistic impairments can also change over time, or in times of stress. 
"Someone you think has 'very mild Aspergers' may well have no ability to understand language when they’re upset. They may have severe auditory processing problems and be unable to watch TV without captions. They may be physically incapable of walking across a crowded room. They may have very little voluntary motion and be dependent on prompts in their environment. They might not be able to initiate interactions or independently tell you that they are injured or sick."
How non-autistic people talk about autistic human beings, how non-autistic people talk with autistic human beings, really does need to change. Here’s what I’d ask of you, if you're not yourself autistic:

  • Don't be patronizing to autistic people when you talk with them. 
  • Don't suddenly change the way you talk with a person if you find out they are autistic. 
  • Do talk to autistic people like you talk to non-autistic people. If you need to modify the way you're speaking, you'll probably be informed of that fact. Otherwise, carry on.
  • Specifically, don't assume you need to simplify your speech. It makes me furious to hear people talk to my son with oversimplified baby language like, "Want watch Teen Titans?" instead of "Hey, want to watch some Teen Titans superhero action?"
  • Try—really try—not to use patronizing terms like "buddy" when you talk to teenagers and adults, if you wouldn't use such terms for other people their age. 
  • Give the autistic person you're speaking with a couple of beats to process what you’re saying. Understand that these may be long beats. Don't get impatient.
  • Don't talk about autistic people in front of them as though they're not there or can't understand. Seriously. Just don't do it.
  • If an autistic person indicates that they're in distress, or doesn't respond when you speak to them, reconsider whether that is the best time to press for a response.
  • Do respect autistic requests for communication accommodation, like writing, typing, or devices. Communication is a human right, not a dispensation.

This is by no means a complete or comprehensive list, but it's a starting point, for non-autistic humans trying to do right by the autistic humans they live with, and among. And, in my case, the autistic young man I love with all my heart.

Saturday, January 11, 2020

The Unrecovered

Hercules and Antaeus
Photo © LluĂ­s Ribes Mateu | Flickr / Creative Commons 
[Painting of the Ancient Greek demigod Hercules and the giant Antaeus, c. 1570,
Oil on canvas. from the collection of the Wadsworth Atheneum Museum of Art.]

Emily Paige Ballou

This is the reaction I wrote in response to the article The Kids Who Beat Autism, originally published in the New York Times Magazine in 2014. While I have no doubt that the parents and therapists profiled believe they have these kids’ best interests at heart, I was—and am—angry and frustrated at the celebration at their “recovery” on the part of people who are not the ones who are actually going to bear the consequences for the rest of their lives.

I’m sad for the kids who are.

The parents, teachers, and therapists and researchers without a clue who celebrate “recovery” because they still wrongfully define autism as a fixed set of permanent inabilities, rather than see autistic people as complete human beings, intrinsically capable of learning and growth—

  • Are not the people doing the work of passing, and are not going to be the ones to find out first-hand just how long it isn’t actually sustainable.
  • Are not the people who get told we’re too articulate to be autistic but have to ration our hours of speech per day.
  • Are not the developmentally disabled women who suffer a sexual abuse rate of around 90%, no thanks to the compliance training that teaches us that allowing others to control our bodies is desirable behavior.
  • Are not the kids pulling themselves through school without disability accommodations.
  • Are not the kids getting their supports and accommodations pulled out from under them when they lose a diagnosis.
  • Are not the kids getting chided and belittled because their challenges and oddity are now seen as choices of defiance or misbehavior.
  • Are not the people being lied to about who they are.
  • Are not the people who are going to wake up one day 20 years from now with no idea who they are or how they got there.
  • Are not the people who will spend a year and a half having a meltdown with no idea of what’s happening or why.
  • Are not the kids being taught that accepting yourself as you really are and as you really work, would be the worst possible thing.
  • Or that the “best outcome” possible for you is to spend the rest of your life pretending to be something you’re not. Even if that means leaving you with anxiety, depression, or obsessive-compulsive disorder.
  • Are not the people who are going to have to re-learn where they belong in space and time and how to live there.
  • They will not be the people giving these kids a community and a support system years from now. They will not be the ones who know what to do when they start having breakdowns and burnouts.

They will not be the ones supporting their kids in learning self-acceptance when all their passing skills fail because they are actually incompatible with functioning in the long term.

We will.

They will not be the people there to pick up the pieces.

We will.

There is, indeed, hope for the kids featured in this article, for joy and authenticity. This article could’ve come with a spoiler alert; autistic adults know the end of this story. We know it many times over.

It’s just not that these kids live out their lives as non-autistic people.