autism

Big Bang Theory’s Autism Simulation

I just posted this over on Tumblr, but wanted to share it here as well.

I’ve criticized The Big Bang Theory for things like its ongoing obsession with fat jokes, its casual sexism (OMG, girls don’t read comics/play D&D/etc), the handling of Sheldon’s autistic/OCD issues, and an ongoing sense of laughing at geeks instead of with us.

But I want to give a shoutout to something the show did recently in “The Itchy Brain Simulation.” Leonard discovered a DVD he had forgotten to return for Sheldon, and started worrying about how Sheldon would react. Because we all know Sheldon can’t let anything go, and would be completely annoying and freak out about the unreturned DVD, right? And then we the viewers can all laugh at the neurotic genius and ask why his friends put up with him.

Only it didn’t play out that way. Sheldon countered by asking why Leonard didn’t consider how annoying and difficult these things were for him. As far as I know, this is the first time Sheldon’s ever stood up for himself in this way. He took it a step further, saying he’d remain calm about the DVD … if Leonard wore an itchy sweater he had gotten as a gift until the DVD was returned.

Animated gifs ahead. (I did say this was being copied from Tumblr…)

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Thursday Links: Autism and Other

April is Autism Awareness month–or perhaps Autism Acceptance Month is the better approach. As it happens, I’m working on a short story with an autistic protagonist. I also have an autistic son, as some of you know. Between the additional posts & discussion, research for the story, and my own ongoing personal efforts to expand my understanding, I’ve been doing a lot of autism-related reading lately.

Other links:

Ada Hoffmann on Autistic Characters and the “Neurotypical Gaze”

Rose Lemberg pointed me to this post by Ada Hoffmann: Note to people thinking of writing autistic characters.

“If you write a story where your character has no character traits except for impairments and behavioural issues, and where they take no actions not related to these issues (or to someone’s desire to “cure” them), you are presenting a distorted and objectified picture of autism. This goes double if you are writing from the autistic character’s point of view.”

Personally, I think it’s worth reading even if you’re not a writer and have no intention of ever writing an autistic character.

There’s a part of me that wants to write a much longer blog post here, talking about my son, about the character of Nicola Pallas in Libriomancer, about the need to listen when people tell you you’re portraying people like them in a one-dimensional way. But I worry that doing so would pull attention from Hoffmann’s piece, when my goal was to divert attention to that piece.

I’ll probably write that post one of these days. But for now, go. Read. Think. And write better.*


*”Write better” is advice I’d give to everyone, myself included, and wasn’t meant to suggest that you’re a bad writer.**
**Disclaimer written to try to avoid hurt feelings, and because footnotes are cool.

Words Matter (on “Disability”)

My son’s IEP (Individualized Education Program) meeting was last week. This was his second IEP, and I wasn’t able to make it to the meeting. So I came home and read through the paperwork, reviewing the plans and ideas for next year, when he’ll be in first grade.

Overall, his school has been wonderful. They confirmed our gut feeling about his autism last year. They tested and found that he was “high-functioning,” but definitely on the ASD scale. They’ve been more than willing to work with us and with him. I’m very happy with everything they’ve done and continue to do for my son.

But as I was reading through the IEP paperwork, I came to the end where it said, “J will have full involvment [sic] and progress in the general education curriculum with non-disabled students…”

With non-disabled students. That line hit me hard, and it pissed me off.

I don’t think of my son as disabled, but the state of Michigan does. I work at an education department. We collect student data for the state, including disability information. Autism Spectrum Disorder is code 15 in the Primary Disability Field of the Special Education Component in the Michigan Student Data System.

It’s not the school’s fault. They’re using standard terminology. And I’m left wondering whether my angry reaction is my own problem, a kind of denial over wanting my son to be “normal,” whatever that means.

I don’t think so … I just don’t think he’s disabled. Dis- is a prefix implying negation or lack, and believe me, this boy has no lack of ability. Strengths and weaknesses, definitely. But he’s not unable to function.

Differently able, maybe. Which I’m sure makes some readers roll their eyes at the “political correctness” of the phrase. But words matter to me, both as J’s father and as a writer, and “disabled” feels like the wrong word.

And yet … there are things he’s unable to do. Nothing that interferes with his day-to-day functioning, but you should see him when I’m reading him the Oz books. The boy cannot hold still. It’s a stimulation issue. The other night, he wiggled so much he fell off the couch. (There was much giggling after this.)

But this doesn’t prevent us from reading the books. It doesn’t stop him from going to school, playing with his friends, or roughhousing with Daddy. Are there challenges? Sometimes, yes. Is he “disabled?” Not by my definition.

I meant what I said about how great the school has been. I know this wasn’t intended as any sort of slight against my son. Just like I know my coworker doesn’t mean anything by it when she dismisses things as “retarded.”

But words matter. They shape how we think about things. How we think about people. I don’t think “disabled” is a bad word.

It’s just the wrong word.

This is What Asperger’s Looks Like

During the sexual harassment discussion, one commenter said certain elements of SF/F fandom simply lack social graces, and you’re going to run into these drooling Asperger types.  It’s not their fault. All you can really do is avoid them and try to warn others.

I’m not linking to the comment, because several people have already confronted the commenter (including an excellent post by Mrissa here).  I’m certain it wasn’t intended to be hurtful.  It’s the kind of comment I’ve heard many times, and I know it’s not malicious.

But it hurts.

I’m having a hard time being my normal, “reasonable” self about this.  My son was diagnosed with Asperger’s early this year.  He’s high-functioning, but there was no question about the diagnosis.  It’s been months, and I’m still adjusting and learning.  But I know one thing — my son is Fucking Awesome.

Let me show you one example of what Asperger’s looks like:

That’s my son Jackson in his Halloween costume, vanquishing one of our neighbors.  (Everyone knows the gorilla is the natural enemy of the Italian plumber, right?)

Jackson does struggle socially.  I remember picking him up from preschool last year, asking how his day went, and fighting tears when he said, “Nobody wants to play with me.”  Most days I’d find him playing by himself in a corner. He has meltdowns when routines get broken without warning.  He can also be overly physical and affectionate sometimes, and we’ve had to work with him on that, but he’s learning where the boundaries are.

He struggles physically as well.  He’s 5 and a half, and still can’t ride a bike.  He’s in physical and occupational therapy every week.  He runs laps in the house most nights.  Lately, he’s started whipping his hands around as a form of self-stimulation.

He’s Fucking Awesome.

He’s in kindergarten now, and he’s making progress.  He’s starting to learn how to get along with other kids.  We visited some friends a few weeks ago, and he spent four hours playing with their five-year-old, with only a few minor, typical squabbles.  I don’t know how to explain how much that meant to me.

The harasser from WFC?  That was someone who knows to behave one way in public and another when he has a woman alone.  That’s someone with social awareness.  Hell, many abusers and harassers have very advanced social skills.  I remember the first time I sat in on a batterer’s group, and how terrifyingly charming these guys were.  These are not people who simply lack social skills or don’t know how to behave due to autistic spectrum disorders.

I’ve heard it before.  Cons and fandom are full of Aspies who can’t communicate save through Monty Python jokes.  Really?  Because Asperger’s Syndrome is an actual diagnosis, with fairly strict criteria that include more than simple social awkwardness.  Like sensory issues.  (Jackson sometimes asks me to squeeze him, because the physical pressure is comforting.)

I had a rough time in school.  My social skills sucked.  But I didn’t have Asperger’s.  I was just a geek.  Smart and awkward and doing my best to get through the day without having my books knocked out of my hands.

I’m not sure when or why it became “cool” for people in fandom to self-diagnose as Aspies, or to misuse that label as shorthand for the awkward, unwashed masses, but I wish it would stop.  It’s hurtful.  It reinforces attitudes and false stereotypes that make life harder for those who actually have autistic spectrum disorders.

My son has Asperger’s.  He’s not some filthy, drooling fool.  I don’t believe he’s going to grow up to become a harasser.  He’s a brilliant, energetic, loving little kid.  He remembers passages from books and movies, and can recite them word for word months later.  He loves superheroes and Mario and Transformers, and watching animated LEGO videos on YouTube.  He’s excited about coming to his first convention with his Daddy this month.

And he’s Fucking Awesome.

Autism Thoughts

Reminder: Tomorrow is the last day to bid in Brenda Novak’s Auction for Diabetes Research.  I’ve donated an autographed copy of Stepsister Scheme and a critique of a novel chapter or short story.  Go forth and browse!  There’s a ton of great stuff up for bid.

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I mentioned a few weeks ago that my son (alias: Jackson) met his school’s criteria for Autism Spectrum Disorder.  We had the IEP (individualized education program), which went wonderfully.  He’ll be in a mainstream kindergarten class next year, but we spent ninety minutes talking about his behaviors and some of the things they’ll put in place to help out.  I expect next year to present new challenges, but I’m cautiously hopeful.

One thing I’ve noticed about myself: I can say Jackson is on the Autistic Spectrum.  I can say he has Aspergers Syndrome.  But I have a really hard time saying he has autism.  My brain just rebels at that point.  (I edited this paragraph slightly for clarity.)

Part of this is probably the evolving nature of the diagnosis.  When I first learned about autism, there was a clearer line between autism and Asperger’s.  My sense is that this is changing, moving more toward the broader autistic spectrum diagnosis.  Mostly though, it’s just hard for me to accept that label for my son.  One of the things I’m working on in my brain…

We’ve looked into getting services to help him over the summer.  But of course, autism isn’t covered by our insurance.  We’ve been looking into one program that has been highly recommended; ten sessions would be a total of $3000.

Three grand.  For ten sessions.

(Editorial aside: to the woman who responded to my thoughts on health care a few months back by saying I was an elitest, lazy deadbeat, please consider this a formal invitation to kiss my ass.)

We’re still looking into options and trying to figure out what he actually needs.  It’s not about “Autistic children need _______.”  It’s about “Jackson, who happens to be ASD, needs _______.”

One of those needs is to improve his hand-eye coordination and fine motor skills.  Building with LEGOs seems like one way to work on that.  I’ve also started him on regular LEGO Star Wars video gaming therapy.  Now if I could only get him to stop blowing me up…

One final thought.  Jackson is very rule-oriented, which I’m told is not uncommon for children with Aspergers.  Yesterday, my wife was teaching him to play checkers.  He did quite well … and then he got his first king, at which point he announced, “But kings make their own rules!”

Autism Spectrum Disorder

So a little while back, I was pondering how much to publicly share about family, particularly my children.  There was a reason for this.

Today we received confirmation from my son’s school that he meets their criteria for ASD — Autism Spectrum Disorder.

It’s not completely unexpected.  My wife is a practicing counselor.  I’ve got a degree in psych.  Both of us had noticed certain behavioral issues.

Jackson[1. That’s the name he chose for himself for Daddy’s blog] is a brilliant little kid, and he’s very high functioning.  He is who he is.  A note from the school doesn’t change that.  What it does is gives us a way to make sure he gets the help he needs in school.

Next steps are to meet with the school this afternoon, and to talk to someone about a medical diagnosis.  (If he meets the school’s criteria, the odds are very good that he’ll meet the medical criteria as well, since the schools … well, since it costs them money to provide special ed. services, they’re motivated to minimize the false positives.)

I’m still processing this, and probably will be for a very long time.

I’m not asking for advice, and I’m not currently in a space where I’m interested in hearing it.  If you decide to comment and tell me what I should do, there’s a very good chance your comment will be deleted.

He’s a good kid.  I know he’s going to be okay.  I know the rest of us will, too.  But it’s hard right now.

I don’t know where I’m going with this, so I’m going to just share a picture.

(This was from two years back.  Jackson was sick.  It’s one of my favorite pictures.)

Jim C. Hines