Sam (getting in the car): Get in the back, Fang.
Peggy: He’s gotta give you a kiss first.
Sam: That’s the thing with love. Sometimes you can’t escape it.
Peggy (watching Sam dismantle a stuck exterior door latch): Sam I think you could be a good burglar.
Sam: I’m working from inside the house.
Peggy (to Sam, after sharing news with cousins about second co-authored book on its way): You wrote a chapter for my first book, remember?
Sam (to cousins): Yeah, Mom can’t write a book by herself.
Sam (after sitting down briefly in the easy chair, rises and returns to kitchen): That pizza’s gotta cook. I’m hungry.
Only a few generations ago, some doctors blamed mothers for their children’s autism. Psychologists wrote long theoretical papers based on their observations of mothers and their children. They concluded that autism mothers were cold and that their lack of love triggered the child’s autism.
If you stop to think about that idea for a minute, those explanations were quite a leap. And a cruel one at that.
We humans look for patterns in the world around us–it’s almost one of our super-powers. We use the information to make meaning, and create loops of ferocious thinking that make the world around us a little better.
Therefore, knowing that we’re supposed to make things better, the Refrigerator Mother explanation for autism just begs the question. How much did those early theoreticians consider and—most importantly, rule out—before concluding they’d observed a pattern of mothers who don’t love their children?
Granted, many people were immediately skeptical of these mother-blaming theories, including other professionals and autism families. The theories fell after a generation, but the damage was done to the families forced to live under that cloud as they raised their children.
And, the blame game is still out there.
The latest iteration has started in a similar way, with people seeing problematic patterns in autism treatment. Young adults with autism are finding their way in the world. Some of them had good support growing up, but the world isn’t ready for them. Some of them had inadequate support growing up, so they have an added burden as they make their way in a world that isn’t ready for them either. Some are speaking up not just about the world’s unreadiness but also about that burden. We must listen. Autistic voices can help us find new patterns and new meaning and build a better world for all of us.
We should be careful about letting one person’s experience and voice serve as the representation for the whole, because that’s how the blame game begins. Even back in the old days, when information was scarce, we had the memoirs of Temple Grandin, Sean Barron, and Donna Williams to show us how different the experiences can be. As Dr. Stephen Shore once said, if you’ve met one person with autism, then you’ve met one person with autism.
Here’s an example of how that can break down: some now argue that asking an autistic child to make eye contact, as a part of treatment service, is inherently abusive because eye contact feels bad for them. Missing from that argument is the basic context, the understanding that for humans to survive, we need to connect to one another. For most of us, eye contact is the fundamental way we begin to connect, from the very first time we hold and look at our new baby and our baby looks back at us.
I asked Sam recently (and for the first time) whether making eye contact is hard or painful for him. I told him I was especially curious now that eye contact changed for all of us after living behind face masks for a year. He said this, “Eye contact is very powerful. I wonder whether I make other people uncomfortable with eye contact.”
He’s right. It is powerful. And he just illustrated the point about one person’s perspective.
When Sam was young, we never forced him to look at us. But after a speech therapist suggested using sign language to boost his early communication, I found the sign for “pay attention” often helped us connect.
The additional movement of hands to face usually sparked him to turn his head or approach me or Mark in some way, so we were fairly sure we had his attention and that was enough to proceed with whatever was next. Over the years, we’ve shared eye contact in lots of conversations and tasks. But if not, we recognized the other ways that we were connecting and I didn’t worry about it.
All of this context—both the need to survive and the difficulty with a basic skill needed for that survival—cannot go missing from any conversation about the value of teaching an autistic child. Some people with autism do learn how to make eye contact early on and are fine with it. Some don’t. For this example, then, we can listen carefully to adults with autism and their advocates as they flag patterns from their bad experiences with learning to make eye contact and make changes. But that fundamental need to connect and share attention remains.
That’s when we also need to remember our tendency to blame others when our troubles feel intractable. Sometimes, in these fresh arguments over how autism treatment should proceed, I hear that same, tired pattern of blame I’ve heard since Sam was born. Take it from a worn-out mother who’s been blamed plenty over the years: some arguments are just another round of the same, they just come inside an elaborate wrapper of mother’s-helper blaming instead.
All the families I know truly love their children and are learning how best to respond to them. We can’t forget that parents have a responsibility to raise their child as best they can. Let’s talk, please. But please also, let’s spare the rollout of Refrigerator Mother 2.0, because it could cost us a generation of progress.
Peggy (after listening to an automated message lifting the boil water notice): Sam! The tap water is safe again! We can do whatever we want with it.
Sam: Except waste it.
Sam (inputting complicated equation for calculus lesson): Oh, poor Mathway!
Sam: It had to do a line break.
Sam signed up for mail-in ballots after the pandemic began. Texas allows individuals with disabilities and voters age 65 and older to vote by mail.
He registered as a Republican after learning that he would miss at least one upcoming local election if he didn’t. Turns out, he got two test runs with the mail-in-ballot routine before the big one — the November presidential — arrived. In mid-July, Denton County had a run-off between two GOP nominees for state judge in the 431st District Court. Then we unexpectedly had a crowded race of Republicans and a lone Democrat vying to succeed our former State Senator, who let no grass get under his ultra-ambitious feet as he hopscotched his way from newbie Texas resident and the state legislature into Congress this year.
When the November ballot arrived in the mail in early October, Sam opened up the envelope and spread its contents across the dining room table. He grabbed a pen and colored in the box to vote for president. He took a deep breath, saying that it felt powerful to vote for Joe Biden. He stood up and announced then that he would come back to finish the rest of the ballot later.
The ballot was long. It included federal, state, and county offices. It also included city offices, as the Texas governor postponed local races because of the pandemic. When Sam returned to finish voting, he surprised me how prepared he was to make informed choices all the way down.
He’d been watching our current president, and deteriorating conditions for a long time. He had thought long and hard about how to vote for change.
Our current president proved himself irredeemable to us when he mocked a reporter with a disability in 2015. The past four years have been so bad that it was genuinely shocking — and should not have been — to watch Joe Biden return the affection of a man with Down syndrome who rushed to hug him several years ago.
It’s a hard thing to explain to people who haven’t been on this journey, what it is like to regularly experience another human being’s black-heartedness in a deeply personal way. When Sam was little, we shielded him. Now that he’s an adult, we have to talk about it.
Those are the worst conversations. Not because Sam gets hurt, or because we don’t have strategies for him, but because we parents are hard-wired to protect our children. When I hear these stories, or watch things unfold in front of me, I want to slap somebody. I haven’t so far, so I guess the strategies are working for me, too.
Sam told me about a week before Election Day that he was going to want to watch the returns on election night, in hopes that his choice would prevail with everyone else. Election night was tough, but as the days went by, you could see the tension lift. Sam is not just relieved, but happy.
“I voted for Joe Biden as hard as I could,” he said.
Peggy: The Mayborn Conference is announcing a new contest, a short story in six words. Writers have been trying to do those kinds of short stories long before Twitter. I have a story like that. It kind of went viral on Twitter. It has more than 170,000 views.
Sam (laughing): Really? That’s great.
Peggy: So here’s the story. “Midnight. Wrong train platform. Shinjuku station.”
Sam (still laughing): That’s just a mishmash of words.
Peggy: So, how did the haircut work out yesterday? Do you need me to trim the sides a little more?
Sam: Nah. There was one spot, but I cut it and I think it’s ok now.
Peggy: You did? That’s great that you could do that. (pause) I’m not a professional.
Sam: Well, I’m ten times worse than you.
Peggy (laughing): That’s haircutting in a pandemic.