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What Word Do You Use To Describe the Absence of Autism?
So, what word do you use to describe the state of not having autism?
I bet you didn’t think of “healthy”. In a review of Jodi Picoult’s new novel House Rules, NYT columnist Lisa Belkin made this comment:
Her central character, Jacob, has Asperger’s syndrome, and while she has an adult cousin with the disorder, her own three children are (you can hear her knocking wood here) healthy.
The assumption Ms. Belkin is making here is that autism is a disorder, or rather a disease, so not being autistic then would render one healthy. Which is completely ridiculous if you really understand autism, because you can be autistic and completely healthy, or you can be neurotypical and not healthy. (Or other permutations.)
After complaints from readers (hooray for my friend @outoutout!), Ms. Belkin eventually apologized and retracted the comment.
Unfortunately this seems to be the general attitude surrounding House Rules, on the part of both reviewers and the author herself. Cat in a Dog’s World has a couple good posts about the book here and here.
We need to stop talking about autistics as “victims”, “suffering”, and not “healthy”.
Gardenpunk: Nothing Less
When you have Aspergers or any form of autism for that matter, you know how hard it can be to form a genuine bond with anyone. As I said to my dad recently, a real friend is hard to find for people like us.
I’ve known my friend Katie (aka @Gardenpunk) since we were six years old, but it wasn’t until we were much older that we became close. I have to admit that I was afraid of her as a child. She most definitely kept people on their toes. When I thought I’d try out a different, non-geek persona, she mocked me into oblivion. Even at that age I understood that she was telling me to be true to myself.
Katie understands me, not because we grew up together, but because she just gets how I feel about the world. She inspires me constantly because she simply refuses to fear life or others’ opinions. Several of my Twitter friends have gotten to know her and agree that she is just 100% awesomeness.
When I talk to her, I don’t have to worry about being autistic, nor do I ever feel like a weirdo. I feel alive. And by the way, she’s actually taken the time to learn about autism so she can understand what this is all about. Although you know, I think she understands me without looking anything up.
So why am I writing about her now? A couple days ago, Katie suddenly developed bacterial meningitis and septic shock. I must confess that this is consuming for me because I just can’t bear to lose one of the few people in the world whom I can genuinely connect with.
There’s been an incredible outpouring of support for her online, and it’s encouraging to see that after many ups and downs, she has stuck it out and things might be looking up. Katie is such a spitfire, and I just know in my heart that her body is fighting with the same passion that she puts into everything that she does in life. #FightKatie!!
(Katie, I stole a photo. Get better and come after me, why don’t you?)
(photos: kswanberg)
iPhone App Review: Model Me Going Places and Hidden Curriculum On The Go
iPhone Apps are a conveniently portable way to entertain and educate, and as I’ve used them it’s occurred to me that they’d make a great autism resource. Two of the slicker-looking apps I’ve seen lately are Model Me Going Places and Hidden Curriculum On the Go! for Older Adolescents & Adults (also available for Kids).
| Model Me Going Places | Hidden Curriculum On The Go! | |
|---|---|---|
| Format | Photo slideshows with music, controlled from a central menu. Can let slideshow run on its own or control the pace yourself using arrow buttons | 100 tips that you scroll through using "back" or "next" button Can add a tip to favorites Asked whether each tip is helpful to you...don't know why Didn't like linear format, random selection of tips, and lack of categorization |
| Content | Focuses on survival skills Breaks down 6 different outings (such as restaurant, grocery store) into basic steps | Some survival skills like dealing with finances and bosses Some questionable advice on Assimilation 101...see image below. I found this offensive. |
| Cost | Free | $1.99 |
Model Me Going Places: Screenshot
Note the logical, unintrusive layout and simple design.
Hidden Curriculum: Screenshots
It would be helpful if the layout was less cluttered, and in fact most of the features are unnecessary. But some of the tips are useful:
However, some of the tips show a lack of cultural sensitivity. I was surprised (but then again, maybe not) to learn that this was written by a person on the spectrum.
In short: I hope Model Me Kids will come out with more iPhone apps to supplement their line of DVDs. This an app worth paying for! As for Hidden Curriculum, I’d really like my money back.
Sensory Processing Disorder and Layering for Cold Weather
Thanks to the Great Freeze and multiple blizzards we’ve had in the Mid-Atlantic this winter, this former California girl has finally learned a thing or two about layering.
If you have SPD or autism or know someone who does, you know how much fear this strikes in my heart. I love J.Crew but J.Crew does not love me:
Tops
This is the part that used to drive me so crazy. Why were other people able to wear button-down shirts, t-shirts, anything under their sweaters, and I couldn’t? No matter what I wore, I ended up pulling and fidgeting.
One day I realized that part of the problem was t-shirts that bunched up, especially in the sleeve. If the material wasn’t soft enough, I’d become aware of every tiny movement the shirt made against my skin.
Another problem was button-down shirts and blouses made of scratchy cotton. They don’t feel scratchy against your fingers, but they sure do against your sensitive belly, chest, and neck!
The solution was to find tees made of modal blends and supersoft cottons (like what Soft Clothing uses) and have that as a base layer. If you’re going a little dressier, try to find the silkiest shirt or blouse you can find, whether it’s pure silk, a blend, or just silky to the touch. You’ll appreciate it when it’s pressed against your skin and not scratching you!
As for the outer layer, lightweight sweaters seem to work better for me than heavy ones, just because I get irritated with all that weight. But YMMV. If you want your neck to be covered, a silky/modal turtleneck feels nicer than a chunky high-necked sweater.
And if you’re wearing thin layers and aren’t bulked up, you can wear a heavier coat without fidgeting like crazy. Until I figured this out, I was putting on my coat and then spending an hour (seriously, an hour) about to burst into tears and pacing around the home peeling off layers.
Socks
Since this silky inner layer/durable outer layer combination worked so well, it occurred to me one day to try it with my socks. My Hunter boots are great for stomping around in the snow, but not so warm without the Wellie Socks, which I never got around to buying.
So I put on a thin silky pair of trouser socks and over that a pair of thick wooly socks, and then fold them over at the top. Voila! They don’t shift around, bunch up, get caught between my toes, and my feet are warm.
Instead Of Nagging…
As many parents and partners know, nagging is of little use when you live with a visually minded person. Especially one who has hyperlexia. Maybe my husband noticed the Post Its I was starting to leave for myself? He started to leave these around the kitchen:
100% effective because they made me laugh.
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