I never really thought I’d be writing this blog, but after this weekend, I felt the need to do so.
We’re super lucky.
Really, I say that, and I mean it.
I don’t mean that we’re lucky that our son has autism. But we’re lucky that he’s a cute little blonde boy who gets all the oohes and aahes and attention. No one really seems him as threatening or perceives him as anything other than a disabled child.
But he’s growing up. He’s 12 now, almost as tall as me, and about 130 pounds. Not so little anymore.
This past Saturday, we were at his Special Olympics bowling practice. And there was another boy there – another boy that was moving from tween to teen, another large boy who was growing up. Only this other boy was black.
He has slightly more advanced language than my son does, and he is far more outgoing, wanting to talk to everyone, share with everyone. He was especially proud that he’d just gotten his braces off, and when he saw another teen with braces, he got right into the teen’s face, showing him his now-braces-less mouth and making a comment about braces that was rather hard to understand (since his mouth was open to show off the lack of braces while he spoke).
The first thought that flashed in my mind was this: “The police would so take him down if he did that to them.”
They wouldn’t understand. They wouldn’t know. They would immediately judge him a danger because of his size, his inability to communicate (which could be seen as drug use instead of disability), and because – let’s just be honest here – because he’s black.
And it really hit me then. My son will get treated differently because he’s white. He probably already does get treated differently because he’s white. But when he’s grown up, when he’s walking down the street, I will need to worry about what will happen if he encounters the police, but I won’t have to worry as much as the other boy’s mother. I won’t have to wonder if he’ll be shot just for walking through the wrong neighborhood. I won’t have to wonder if he’ll be stopped and construed as “hostile” or “violent” just because of a simple thing like skin color.
Now, please realize I’m not saying that police are bad and evil. They are in dangerous situations. They have to make snap judgments. They are the ones called when someone else perceives a “dangerous situation.” So it’s not only the police that I’m really talking about here – it’s everyone out there that can escalate what is simply a boy, teen, or man with autism and an inability to communicate clearly. I used the police in my example because of recent news (and not as recent news) where police over-reacted to situations involving the poor, the homeless, and the disabled. And when a minority is thrown into any of those mixes, the situations tend to get worse.
I can’t do anything about the white privilege my son will undoubtedly – and does undoubtedly – receive. But I can try to do something about the fact that others will not get it. I can start simply by being aware. I can start by making sure others are aware. And I can start by trying to get others to understand that just because someone’s skin or nationality is different than their own does not mean that the person is any different in any other way.
Let me start by saying that I love John Scalzi. Really. I do. I swear. If I didn’t, I wouldn’t have gone to his signing/reading up in Houston when “Lock In” came out. I was totally enthralled by his reading of the part of the “book” that wound up not being in the book.
Then I read “Lock In.” Well, I tried to read it, anyway.
I stopped about 100 pages in. Because, regardless of his intent, what I got from it was autism and Asperger’s.
The threep suit that the main character (male or female – you take your pick, but I’m using “he” for short-hand in this blog posting) wore made him seem like he had Asperger’s.
The sensory stuff that he dealt with, the super-memory, being locked in his own head…like kids with autism who can’t communicate.
I was okay with it, and I kept reading because I kept thinking maybe I was reading too much into it. Maybe I was the one who just put autism into everything because I think about it so often.
Then it was time for the scene at the dinner table of the fund-raiser of the main character’s father. And there was an argument because many people at the table felt that the locked in people should try to be more “human” (even in their threeps), while others argued that it was the individual’s right to choose how they interacted with the world.
And I had to stop.
There is such an argument right now about how much people should accept. Should people on the spectrum be forced to be “normal”? So many people force their children to go through ABA and learn to behave like all the neurotypical people. No stimming (which, as you can read about, is often extremely detrimental to stop for many people on the spectrum).
I also remember, from oh so many years ago, an article that I believe was in the New York Times about a woman who was happy with her son, she kept saying that in the piece, but then when he was 8, he wanted to be Mickey Mouse for Halloween. And, clearly, that was unacceptable, and so she had to “fix” him to get him to be more like his peers. I wanted to slap her for forcing him into a role he didn’t want to be in. Why should he change – just to make her happy? To make society happy? The kid was happy. What difference did it make if he loved Mickey? There are plenty of adults who do, too!
It goes further than that, of course. I could write about this for pages and pages.
But I’ll just stop with this: imagine being truly locked in. Imagine not being able to communicate your wants and needs. And imagine that, like in the book, the government cut funding to things that would help you to communicate.
And now you know why I couldn’t keep reading. The reality is there. The thought of the insurance not covering things that might help Simon is a reality I don’t want to consider, even though I know that’s probably where the world is going.
But rather than end with that achingly painful thought, let’s think about something else. What if we looked at the behaviors of autism differently? What if we considered the good and the bad, and we helped those on the spectrum be happy instead of making us happy?
I keep seeing all these stories posted up online or in the news about people with autism. They are all stories of success and hope. They talk about being diagnosed at the age of two, and not talking or making contact with the outside world at all, but now they’re performing Shakespeare and doing complex algebraic equations at the local university.
What am I supposed to take from those stories?
Because we haven’t had any of those amazing success stories. We’ve had long, slow, and not even steady progress. From what I can tell, when Simon was five, he was on a two-year-old level. Now he’s 12, and he’s maybe at a four-year-old-level.
But will he have any more future movement? Or is this it?
We stopped his outside OT and Speech (he still gets it at school) because he wasn’t getting anywhere. He’d hit a wall.
He still surprises us some days, but other days it’s like there hasn’t been any changes in years. We still don’t have actual conversations. We still have to test him to see if he means what he says by re-asking questions and asking questions in different ways. He still does lots of “TV talk,” and while some of it might be slightly more appropriate, not all of it is, and, in fact, most of it isn’t.
But with his medication to handle his anxiety and aggression, he’s happy.
Shouldn’t we all be happy then?
Is achievement the only way to be happy?
What is happiness when it comes to this?
And who decides all this crap about what is “good” and what is “success”?
I know, this blog asked a lot more questions than it answered. But they’re all important questions. And, honestly, I think the questions are almost more important than the answers. Because the answers aren’t there. Not yet. And they may never be there. We won’t know what he does until he does it. We won’t know what “success” is until we’ve achieved it.
Lately, Simon has been on a Christmas movie kick. He watches “Christmas Eve on Sesame Street” (one of my favorites), “Elmo’s World: Happy Holidays” (not one of my favorites), and “Rudolph the Red-Nosed Reindeer.”
I have nothing against Rudolph, except…well, the message is a bit disturbing. Rudolph is forced to fit in – to literally cover up who he is and what he is (by donning a black cap over his red nose). And when it’s revealed that he’s not “normal,” i.e. not like all the other reindeer, then he’s shunned and kept from participating in society.
Until, of course, Santa needs him.
Then suddenly his difference is worthwhile and acceptable. More than acceptable, really. It’s something to celebrate! Go different people! (But only if that difference it helpful and benefits us!)
How is that any different than what Richard Dawkins said in his tweet when he declared that only some people with disabilities shouldn’t be selectively weeded out through eugenics?
Haven’t heard about it? Here’s a little piece from Huffington Post –
Dawkins tweeted that if someone found out that their fetus had Down Syndrome, they should “abort it and try again. It would be immoral to bring it into the world if you have the choice.”
When someone brought up the Autism spectrum, he said, “People on that spectrum have a great deal to contribute. Maybe even an enhanced ability in some respect. DS not enhanced.”
Seriously? Seriously? We get to decide which disabilities should be allowed and which ones shouldn’t? And what about people on the spectrum who do not have “enhanced” abilities? What about people who are more severe on the spectrum and need help to live?
Dawkins says that he thinks that there’s a “profound moral difference” between deciding to abort a fetus and stating that “this person should have been aborted years ago,” but I struggle to see the difference. Is his position that, once the person is born, then it’s okay to deal with the disability, but if it’s known, we should avoid it? What about physical disabilities? What about being an asshole? When will we get a pre-natal test for assholes?
(Please do not take this blog as any sort of stance on abortion as a whole…this is purely about eugenics and those who believe that we should chose who lives and dies based on their perceived value to society…)
Today a guy walked by me in the parking lot of the grocery store just as Simon got into the car and I was starting to put the groceries in the trunk.
This guy said, all disgusted-sounding, some comment like, “Huh, he’s just getting in the car and getting comfortable and not even helping you load those up.”
His tone made it clear. “Kids these days.” And maybe even “parents these days.” Because he clearly thought I was also doing wrong by not forcing my son to help.
Part of me wanted to correct him, tell him that I was happier with my son sitting in the car – somewhere safe, unlike the parking lot where the birds crying overhead would scare him and where loud noises would bother him.
Tell him that just minutes before, as I was paying for these groceries, my son had turned to one of the male employees at the store – someone we’d never seen before – and asked for a “big hug” while the guy looked all kinds of uncomfortable, and I’d had to ask Simon to come to me (again) which is what I’d been doing for the last fifteen minutes of waiting in line, trying to keep Simon from bothering the guy buying all the sushi and the woman with the shaved head and the monk’s robe (who I somehow thought should look enlightened or at least happy or even tolerant, yet the only way to describe her expression was disgruntled).
Tell him that the cashier had given Simon “Buddy Bucks” so he could go win stickers to save up for a prize, even though he doesn’t care about saving up for the prize; he just likes to put the sticker on his hand and wear it, going around all day with a yellow square that says “2 points” on it.
But I didn’t say anything to the guy because I’d rather let him be smugly satisfied with himself because I don’t owe him an explanation, and he wasn’t asking for an explanation. He was passing judgment on me and my son without knowing anything about us. And that’s his problem, not mine.
Main take-away point here?
How many times do I have to shout it from the rooftops?
While we were on vacation last week in Alabama, we took a boat ride. It was a three hour tour (but the weather never got rough, and the tiny boat was not tossed). But there was a woman on the boat that very clearly had autism.
She was older, my guess is in her twenties, maybe late twenties.
And she seemed, to all outward appearances, to be happy.
She rocked, although, to be fair, we all rocked since we were on a boat. She stimmed. She used sign language to communicate, and she seemed to argue with one of the people with her – her father, maybe? – who kept getting frustrated. She was signing something I couldn’t quite figure out (she was superfast as it), but I saw her saying something about little, and he kept saying something big. No idea what it was. But he got frustrated with her because she wouldn’t give.
Otherwise, she sat there, beaming happy. Her hair was blonde; her eyes were blue. She wore a charm bracelet that included all types of charm, including an autism puzzle charm.
And it gave me hope. Hope that in another 10 years, when Simon would be about the same age I’d guessed her to be, he’d be able to communicate that well, argue rationally, stimming in public without judgment.
As it was, Simon filled the boat ride with lots of “tv talk” (a lot of Elmo, for some reason), and paced up and down, back and forth, touching everything he could safely touch, his sea legs fully under him, looking like he barely needed to make any adjustments because of all the rocking and rolling the boat was doing in the waves.
I wanted to talk to the woman and her family, ask questions, know their story.
But that’s not my right. It’s their story, and it’s their life, and I wouldn’t normally go up and talk to random strangers, but, at the same time, I’d love to have random strangers come up to me and ask me about Simon because I’d love to educate them about him and about us and try to show them that autism isn’t some unsurmountable evil, and that as long as we can handle its side effects (anxiety, aggression, lack of communication), then there’s no reason to do anything else. As long as Simon can function and be happy, who are any of us to judge that he needs a “cure”? that he needs to change to fit in? That he has to enjoy things in a certain way? That there’s a right way and a wrong way to live and be happy?
Acceptance can go a long way, and seeing other people being accepting, being happy, being out there – it tells me that acceptance is happening.