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”.

What Word Do You Use To Describe the Absence of Autism?

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)

Gardenpunk: Nothing Less

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.

iPhone App Review: Model Me Going Places and Hidden Curriculum On The Go

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.

Sensory Processing Disorder and Layering for Cold Weather

100% effective because they made me laugh.

Instead Of Nagging…

I just started reading Seth Godin’s new book Linchpin, and although I’m not a rabid follower of his, I feel a huge sense of relief.  I think this line sums up how I felt about my previous job as a teacher in an urban school district:

We are surrounded by bureaucrats, note takers, literalists, manual readers, TGIF laborers, map followers, and fearful employees

What mattered to me in that job was finding out what black hole my students’ special ed paperwork had disappeared to and why no one was telling me they had IEPs that were to be followed.  What mattered to me was finding out why we were using a reading curriculum that we were being paid to use despite its ineffectiveness.  Instead I was disciplined for not following the exact order outlined in the teacher’s guide.

I questioned why kids were being hit and forcefully restrained.

I refused to take the hint that I should stop filing incident reports when parents and students made overtly racist comments like “dirty Chinese”, “Chinatown girl”, or “do you eat cats and dogs” to me.

Strangely, no one else felt the need to ask questions like this.  They were happy to show up five minutes before the kids came into the classroom and leave as soon as the bell rang for dismissal.

On Fridays, instead of spending any time preparing in the mornings, they got together and ate donuts and I was weird for choosing to prepare for the day.  It was considered anti-union to skip out on the Friday donuts and coffee because that meant you weren’t late picking up your students and it made everyone else look bad.  Everyone would get mad at you for just trying to do your job.

What I learned was that in that system you DON’T ASK QUESTIONS.  You don’t think about how you can make anything better, you just do as you’re told.

Systems like that are not only outdated, they’re doomed to fail.  They talk a good talk about all their different plans for change, but when employees aren’t allowed to ask questions, nothing can ever change.    It’s unfortunate both for employees who feel so stifled and oppressed that they end up leaving and for students who are cheated out of a fair education.

I hear this sentiment expressed by many adults on the spectrum who are natural troubleshooters or analysts, and yet find that their employers don’t welcome this gift.  In my case, the problem was that my schooling was geared towards an analytical career (even my masters program seemed like a pre-Ph.D track), but I, being young and idealistic, chose an overly bureaucratic job.

While a career change isn’t an option for everyone, you might want to ask yourself whether you’re more willing to change for your job or whether you want your job to change for you meh, on second thought I’m not liking that advice so much.  What would you suggest for someone who finds his or her inquisitiveness and desire to fix things discouraged at work?

(photo: Ollie T)

Why Questions Are An Asset, Not A Nuisance

This question was brought up a while back by Turner and Kowalski and it’s been on my mind ever since.

What’s worse is that people have the nerve to talk to me as if they never made those comments, or they are completely unaware that their comments could be construed as offensive.
I don’t come across very many non-white autistic bloggers or Twitterers.  That in itself doesn’t bother me because most of my friends are white, but it does create an atmosphere that lacks cultural diversity.  And no, liking anime doesn’t count!

From what I can see, these few people think it’s okay to mock or disparage certain ethnicities because they talk differently…or have mannerisms…or have different eating habits.

Wow, doesn’t that sound familiar?

I just don’t get it.  /Rant.

(The vast, vast majority of autistics I’ve talked to have been really great, for the record.)

We Are The World?

Dear readers, I need your input.  I have the opportunity to train a group of retailers on how to make shopping and dining out more tolerable for autistics and our friends/family.  As you know, this issue is near and dear to my heart because of the sensory and auditory difficulties I’ve dealt with for so long.  (See this post and that post.)

One of the biggest challenges for me is conversational noise, which I know they can’t eliminate.  But it would help to be seated facing away from a crowd so I can focus better.  It doesn’t cost them anything and would decrease the amount of sensory stimulation I receive.

What are the biggest challenges for you in restaurants, shops, churches, etc?  What do you wish they would do to be more accommodating of autism and SPD on an ongoing basis or for a special event?

I’m excited to be planning an event designed to help autistics and families feel more comfortable going out.  Not only is this a great thing for the people who get to participate in my area, but it’s important to get retailers to understand why and how to accommodate autism, and even better for them to hear the voices of people on on the spectrum.

(photo: skateaddict)

Because Going Out Shouldn’t Be So Hard

You know those Twix commercials where a person finds him or herself in an awkward situation and breaks out a Twix bar to buy some extra time to think of a response?  It would be so super great if life worked like that.

Need A Moment?

Perseveration can also happen with emotions.  When I’m trying to explain to my husband something that’s frustrating me, my brain can get stuck in an endless loop, like a broken record.  And when that happens, the same emotions and words just get played over and over.

How To Recognize It

It’s hard for a person to realize that they’re prone to perseverating and when they’re in the middle of doing it.

Perseverating makes you feel you’re trapped in your emotions, and they go on and on because no one else understands you enough to resolve the situation.  Or you’ll think the situation is sort of resolved and then a few minutes later everything comes rushing back and you’re saying the same things all over again.

Make It Stop!

Instead of waiting endlessly for the loop to stop, I sometimes try going outside to help me reset.  I used to do this without knowing why – I’d just run off to the bookstore.  Now I understand that I need a change of scenery because my brain needs a new set of inputs to process in order to stop cycling that loop.

For you the solution might be exercise, playing a game, or doing art.  Whatever it is, you should choose something that won’t allow you to dwell on the situation you left behind.  Venting online is kind of like winning a battle but losing the war – you may feel a temporary boost from the sympathy you get, but it won’t help you stop perseverating.

I’d also suggest having a talk with your partner, roommate, or family beforehand if you need to “disappear” or stop talking during a conflict, so they can understand your motives.

Perseveration and the Broken Record