Let’s talk about autism for a bit.
Last month was Autism Awareness Month. That’s what the neurotypicals (that is, people without autism) have named it. But within the autism community itself (that is, the autists and the people who love them and want to accept them on their terms, not the terms that neurotypicals have laid out for them), it’s called, wait for it…
Why April, I don’t know. Because it begins with the letter “A”? Seems as good a reason as any. Though I do love that National Poetry Month has also been assigned to April. Two great tastes that taste great together! And I’m sure I don’t need to point out to you that the words autist and artist share, among others things, an uncanny likeness.
So while I haven’t written about autism for awhile, I’ve been doing a bit of reading. Mostly blogs. An article by Temple Grandin on Slate. Just a little over two years ago when I was getting myself acquainted with the autism community online, hungry for information and support and shared experience, it was mostly peopled by parents (mostly moms) and “experts”. Or maybe that’s what I was looking for so that’s what I found. It’s what I needed.
Today, the voices of autistics themselves are much easier to find. And most of what I read in April came from them. And what they have to say is so vital—for me, for Jonah, for anyone who loves an autistic person—who, let’s be clear, is simply a human being (as if being human was ever simple).
The thing that really threw John and I when people started suggesting (around the age of 2) that Jonah might be autistic, the thing we just flat-out denied, was the diagnostic criteria about autistics lacking empathy. Jonah didn’t. What I mean is, Jonah is one of the most empathetic people I know (or he can be). Even the times when he goes stone faced or ignores the pain of others, even then he is experiencing something very intense. Sometimes we recognize this. Sometimes we don’t. There are times when Jonah seems completely indifferent to Gabriel’s pain especially. But when G gets hurt, he shrieks and rolls and cries. It’s enough to overwhelm anyone, and especially Jonah, who I am convinced feels things so intensely it sometimes causes him real mental pain.
Autistics are often accused of living in their own world. This morning I read an article written by an autistic woman that so distinctly describes what I see in Jonah.
The fact is that we all share the same world. My experience of our shared world is much more intense than yours seems to be. My sensory system is often overwhelmed by the amount and intensity of sensory information it takes in.
In addition, I feel your emotions more intensely than I can tolerate. Many times I cannot look you in the eye as I get too much emotional information when I do this. Sometimes it is painful. It shuts down my system…
I know you have made up many stories about behaviors generated by my autism neurology. It is human nature for us all to make up explanations for unusual behavior. But please, will you stop saying that I am in my own world? Besides not being true, your words create a dividing line between what you perceive to be your world and my world.
The dividing line you have created means there are all of you human beings over there on your side of the line and then there are autistics over here on the other side of that line.
I do it too. I say, “he’s in his own world.” It’s the only way I know how to describe his bizarre behavior: the crashing into walls, the manic vocal perseverations, his need to take the blame any time anyone else is in a mood other than “happy”, his inability to make choices and the meltdowns that ensue, the strange and beautiful repetitive gestures he makes with his hands when he’s excited or telling me a story.
This morning when I told him he needed to try and reign his body in a little before he got to school, he responded, “Yeah, and then they’ll say ‘What are we going to do with you?’ And then I’ll have to go up and down the stairs.” He laughed.
“Who says that to you?” I asked. “Is it Miss C? Mrs. L? Mrs. A?”
“All of them,” he replied.
I don’t like the way that sounds—“What are we going to do with you?”—but I understand the sentiment. And I know the people who work with J love him, so while words matter, that love matters more. Jonah’s job at school is to learn, and it’s hard to learn when you’re bouncing off the walls. But. What’s he getting from that bouncing? Definitely something. So they try to keep him safe, give him an activity to work things out. Running stairs. Swinging. We walk to school. We walk home.
Perseverations get a bad rap in the clinical world of autism. After a quick scan across the internet, you’ll find three “interventions” widely used: stop the behavior, teach the child (or adult) how to play or act “appropriately”, or medicate. What these options communicate: “We don’t like you the way you are. You’re kind of a freak. Let’s make you more normal. More like us.”
Granted, perseverations can get in the way of living life. You can get stuck in them. It’s not unlike my need to obsessively clean when I’m very angry. Sometimes doing something calms me down and helps me think through what’s going on instead of reacting and then reacting to my own reactions. But often, my cleaning mania just makes me madder. I spin further out of control.
Perseverate and persevere share a root: from the Latin perseverare ‘abide by strictly,’ from perseverus ‘very strict,’ from per- ‘thoroughly’ + severus ‘severe.’ The word perseverance generally conotes a positive, admirable response to difficulty. Perseverate does not. It suggests obsession. The actual definition isn’t nearly so negative: “to repeat or prolong an action, thought, or utterance after the stimulus that prompted it has ceased.” Isn’t that how an idea becomes a movement? How a reaction to beauty or truth becomes a poem or a sculpture or a novel?
It’s something to consider.
Temple Grandin’s is famous for the phrase “different, not less.” Throughout Temple’s life, especially as her mother struggled to find a school where Temple could learn without being separated from her peers, she (Eustacia Cutler) made it clear that her daughter was different but not less. And the truth is, maybe Temple is actually more. I think Jonah is. I didn’t come up with this construction myself. Jess over at diary of a mom said it first. And I completely agree:
Because if there’s one thing that I’ve learned over time, it’s that it’s flat out wrong to assume that because I don’t relate to the way in which my child is interacting with her world, she’s not. Not only is the assumption wrong, it’s the opposite of right. The opposite of truth. Of her truth — that she is not just different, not just ‘not less’, but sometimes, often, she is more.
Example in point: after Jonah’s spring school program a few nights ago, a woman approached Jonah and I, eyes glowing.
“I just wanted to tell you that Jonah is the reason we decided to send our son to Canton Montessori,” she began. “When I visited the classroom last spring, he came right up to me and said, ‘Hi, I’m Jonah Caedmon Estes. Can I help you with anything?’ That night I decided. So thank you.”
Jonah seemed oblivious. I prompted him to say goodbye. But there it is, that more of his.
He’s got his share of hurdles to jump, crawl under, go around and knock down. Heck, we all do. My job is to make sure, as best I can, that the more doesn’t get knocked out of him. Not that it could, but it could definitely go underground, a thing hidden and shamed. Unintentionally, I sometimes contribute to this corruption. Persevere “my Jonah” (G vernacular). It’s okay every so often to tell your mom to “shove off.”