Everybody in our family has Autism. My husband’s Autism makes him a mathematician, all logic and reason. And me, my Autism makes me a writer. I write long paragraphs because I fear my words won’t be enough. My son’s Autism makes him an encyclopedia. He remembers just about everything he reads or hears. The cats have Autism, too, but we just call that being cats.
But my niece’s Autism, her Autism, is more like the Autism-of-possibility, like a potential future awakening she doesn’t yet see she has, as if in the future, someday, we will have a long talk and the hours she spends on art, and she amazes us all with her talent, and her interest and gifts in robotics and computers, where she spends so much time learning how things go together, and her love of acting and performing, where she spends so much time trying to memorize and to pick the right costume, yet is afraid to talk to strangers and still, at twelve, might hide behind her grandmother, will all make sense. The art, the robotics, the acting, and the fear of social speaking are all part of the Autism that’s all her own.
They still remember the day he came home with them. They had deliberately chosen the one who was to be his brother: orange and white and cowering in the “multi-cat room,” afraid of the other cats. He had to be saved first. Draper. They had tried one or two other cats near him, but the cat seemed so afraid of everyone. Then, it was suggested that they try Charlie, who had been surrendered when his owner could only have one cat in the new apartment. Charlie was a blue-eyed Lynx-point Siamese and the woman had seen him and wanted him immediately, but she tried to be logical: a cat’s appearance tells one nothing about the cat, really, and so she disregarded him. After all, a Siamese would take no time to find a loving home. But when the worker suggested Charlie and they had him brought him out, he looked at Draper indifferently, and decided the cat room was better. That’s when they brought both of them home.
The first time you go AWOL, stumbling over the sides of your crib, you might rush yourself over to the bookshelves and select a few titles. You’ll toss them into the crib, understanding that reading in bed is to be the most divine of pleasures, but be forced to cry to get help when you can’t lift yourself back into the crib with your plunder. You’ll be reading fluently by the age of two or so, confusing your mother when your precociousness in life doesn’t match up with your reading prowess; you hide behind her at every opportunity and are subsequently enrolled in pre-school to “socialize” you. Your little sister never has to go.
You’re such an academic wonder, your mother and father push to enroll you in Kindergarten at the age of 4. After all, having an October birthday can’t be a hard-and-fast rule for someone who has been reading for two years, right? The district will offer everyone the opportunity, but only you will pass the screening to gain admission to Kindergarten early. The only thing that tripped you up in the screening? Of all things, it will be the eye chart. In a real doctor’s office, eyes are screened with a chart of a hodgepodge of letters grouped in a pyramid shape. But when reading before attending school is unusual, there will be an eye chart made only of the letter “E.” Some E’s will be facing left, others right, and others are up or down. You will be confused when they ask you to pretend your hand is an “E” and turn it to show which direction the letter E is pointing. You have no idea they are trying to check whether you can see. Had they busted out a real eye chart, the one with all of the letters, you would have passed it the first time, rather than having to go back a second time to have the lady imperfectly explain to you the hand gestures you needed to make to “read” the eye-chart of a single letter.
What is the secret that neurotypicals know about having a lifelong friendship with someone? Today, I grapple with this question whenever someone tells me about someone they’ve been friends with since kindergarten, or how they still get together with college friends. I think about my college roommate, my then-best friend, and wonder.
Linda was an elementary education major, but she was too honest to teach young children. I watched her get frustrated in student teaching when the teacher told her to never admit being wrong in front of the children, and wasn’t at all surprised when she ended up working in computers, instead. Her mother was a math teacher and a bit blunt for most people’s tastes and her father, an engineer. Linda seemed to skate the line between “computer savvy” and “girly-girl” better than the average girl interested in computers in the early 1990’s. While Linda had had a high school boyfriend or two and had dated a few guys during college, I was timid around boys, but bossy and demanding around women, which meant that I was hopeless whenever we (rarely) had the male of the species around our women’s college and it took a special woman to put up with me. Linda fit the bill, and we became roommates our second year at college.
I heard a click from the door and opened my eyes. Quarter after five.
Eleanor slipped into the darkened room. I pretended to be asleep.
“Are you awake, Kate?” she said in a voice slightly above a stage whisper. When I didn’t answer, she turned to whoever she’d left at the door, “Let me get my books and put this over by the closet.”
Whoever it was didn’t respond. It was probably Gwen, who had taken Eleanor home with her for the weekend since I wasn’t feeling well. Sister Dorothy, the principal and sometimes nurse at our boarding school had declared me “well enough” late last night, but I still felt sleepy.
When Eleanor left, I opened my eyes and turned on the light. I looked around, to see what she’d brought back with her and spied a garment bag that seemed new. Like me, Eleanor had been at St. Agnes’ since she was 12, and we’d been roommates the whole time and rarely went home on holidays. We knew everything about each other.
The Thinking Person’s Guide to Autism recently posted a great deal on ear defenders (ear muffs, headphones without plug-ins) from Boing Boing at its Facebook group. The deal is still there for a few days, and I snapped up 5 for my students at school. By the way, leave and come back until they give you 10% off on your first order. It almost paid for my shipping which was $9.95 on 5 of them, the maximum it would sell me at a time.
Anyway, some “helpful parent” was complaining about how ugly and bulky they are and that it’s basically license to get your kid bullied as a result. Later, she said, not realizing I was trying to help her not come off as a jerk, that there would be plenty of times it would be “inappropriate” to wear these headphones because of the bulk. She kept silencing the voice of 1) a more experienced Autism Mama than her (me; my kid is clearly older) and 2) MOST importantly, an ACTUAL AUTISTIC PERSON. Yeah, she’s new to this game.
She kept backpedaling to defend herself, rather than realize she was normalizing a systemic problem with society rather than focusing on her child’s needs.
Here’s why she’s wrong and how you can make the same point without enabling bullying or accepting the cruddy world we all of us are forced to live in.
Every so often in Catholic circles, you get the mom “helpfully” posting the link of the vaccines which have as a source aborted fetal tissue, or so the argument goes. They claim you cannot vaccinate your child with that version, and that since there isn’t a great MMR alternative, you should never get that.
I completely and fully respect the parent when it comes to decisions about whether or not to vaccinate. I believe the parent, not the government, should decide on what is best for his or her own child.
However, let’s take that stance apart a moment.
I believe in parent decisions because I am a Catholic school principal and I believe that if the government could, it would shut down my school. We have had to fight for our right to exist as a school, and there are even Supreme Court decisions that are involved in a parent’s right to educate their own children as they see fit.
HOWEVER, there are also court decisions regarding whether you can force others to listen to your opinion, whether that opinion be well-reasoned, or, well, kind of nutty.
And you can’t.
Here’s the exchange that was ticking me off today:
Guess whose pitch went well enough that the agent, looking for authentic female voices who also has background in working with Autistic children as a volunteer…greenlighted this person to send her the full novel? Not chapters. Not an outline and a chapter a two. The full novel?
(This is agent speak for: this particular project, I really do want to see and I’m not on the fence about whether or not I want to see it.)
She seemed very nice and nurturing enough (she literally said she doesn’t like to give up on an author if she keeps believing in him or her, even if they have to change direction sometime) that she might be a good fit for me. She also seems to be kind and gentle enough that she might have actually developed relationships with editors in such a way that she stands out. I know New York can be rough; a Midwesterner selling a Midwestern book (she’s sold to all the majors) might be a welcome contact for them in terms of being treated pleasantly, but firmly.
It’s early, and the actual book might not be a fit for her, but I felt blessed to even move to the next step.
This time, I know we moved forward because of my Autism, and not in spite of it, since we spent quite a bit of time talking about what adult Autism looks like and how it can manifest in the novel without completely revealing itself. There is something quite beautiful about that.
I’ve mentioned, before, that I’m doing a job for which I would be paid at least triple what I’m making now, with full benefits when I now have none, if I could work in public schools.
I’m not unhappy I landed in Catholic ed., but even then there are different types of Catholic school jobs. I’m meant to lead the outcasts. On the plus side, we are the only school in town that would be actually making a difference because we are arming our kids to move into the middle class and self-advocate. We take the time to find the right place to succeed.
But on the other hand, the lack of compensation and access to health insurance at a better price than on the health insurance market (our premium just doubled, and we were struggling to afford the price that it was to begin with) is stressful and takes its toll on my health. Among Autistics, this problem is somewhat normal as many of us are underemployed. We can find a job, but it’s the best we can do since the primo jobs are saved for people who can navigate the social structures better than we can, so we continue to struggle.
Here are times I had chances at better jobs, but simply couldn’t land them.