Sunday, January 6, 2008

Code Orange

Three hours of sleep. Blank. And then the plane and the long flight and don’t act weird in the airport. Is there time for coffee? Code Orange today, a heightened state of alert, I’m not sure why. Be careful. Now what was I wanting to say about this latest discussion of autism as a disability? So many things, but it’s hard to remember, not enough sleep. In the airport, I run into someone. What are you presenting on? I tell her. All of the words are there, advocacy, internet, adults. Oh, she says, autism. That is a huge problem, so many kids have it. I wonder if I am wasting my time. The LCSW beside me has something to add. It’s the diagnosis, she says, quietly. Over-diagnosis.

Well that’s one way of looking at it. Too early in the day to argue. Don’t act weird in the airport. People have been detained for being autistic. Not long ago, a man was told he would have to leave the plane. Try not to act weird in the airport, don’t act weird in the plane. I talk to myself some. Repeat things. Pace. Have you ever eaten a pine tree? Ever? Ever? I have a talking bird toy in my carry on bag, a small one. Repeating is something I do all of the time, echolalia, but even more when I’m nervous. They don’t know what’s causing it all, she said, it’s such a huge problem.

My partner wonders if she should come to my presentation. Will this upset you? Here is the Powerpoint handout. Here are my thoughts, my feelings. Here is some of the work that matters to me. This is a long flight. The battery to this laptop won’t last. I have to say one more thing. Does this matter?

This presentation is about the Hub, but necessarily it is about me, about this blog and my life as an autistic person. Is it a disability to talk to oneself, to repeat things, to carry a toy bird, to stumble over curbs, stare into space, nod in response to questions and sometimes not even? I don’t think so. Not this, not these things.

When I get to the conference, most likely I’ll be able to talk. It’s not guaranteed, though, it’s an act of faith every time I say I’ll do this. Whether I’ll say anything near what I mean is something I won’t know until late Tuesday, after. I have prepared the accommodations I’ll need, Powerpoint with plenty of visual aids, reminders, words in black and white, pictures I can point to if necessary.

The people there will understand a bit about autism. That helps, and then again…I have to wonder sometimes, do they think, well that was a pretty good job for someone like that. Still I have to admit a preference for that condescension over the smirks and the bored or embarrassed looks I’ve seen from the others, those who must have been thinking, why can’t she just spit it out? Get on with it?

Someone has left a message in the in flight magazine at my seat. It is a scribbled threat, meant as a joke and an act of bravado I’m sure. The sort of thing you can’t say out loud on a plane or anywhere near the airport. I picture the guy who wrote it; I’m pretty certain he’s not autistic. I try not to breathe fast, try not to look around, quietly put it back. Later, I realize I’ve left my fingerprints all over the “evidence.”

What makes it a disability is don’t act weird in the airport. Should she come to the presentation? Too early in the day. A preference for condescension. Looking one more time to be sure the handwriting doesn’t look enough like mine to be mistaken. Don’t be yourself, not too much, you could be detained and arrested. Back at the terminal, I’d seen a man I’d thought might also have been autistic. He and I had exchanged a look past each other, like code for something. A kind of fear? Code Orange today. Color of my life.


  1. I haven't traveled on an airplane since George Bush was elected, and this is exactly why. I worry that if the TSA goons think I look too weird, I might end up in some secret torture chamber with interrogators demanding that I confess who knows what, and then I might repeat whatever it was without being aware of it. Argh.

    Political repression or disability? I'd say it's both, like in the old Soviet Union when they locked up the dissidents in the mental institutions for having obviously impaired thought processes.

  2. Damn! I forgot about the presentation. Too much other stuff; it got buried.

  3. Code orange! I like that.
    At our local train station over the loud speaker they always say 'If you see something unusual - report it'
    As yet we have not been reported!

    But would just like to add, no you are not wasting your time.

  4. Wow, Bev. What a fabulous post. You blow me away. Hope the presentation goes well.

  5. Wow. That sounds like stressful flight. So, did someone really leave a nasty note? Terrible.

    I am sure you do well speaking. Being willing to go, all the work preparing and getting there is possibly the hardest part? I will be looking forward to hearing how it all goes. I am proud to have you out there teaching people. Good luck!!!

  6. you continue to be a talented scribe. i read "johnny got his gun" for the first time 2 nights ago, and loved the writing style in it, very immersive, fast-paced, lost in it, staccato and impulsive at the same time. this post of yours was similar.

  7. I'm glad you went, despite the worry about acting weird in the airport. I think your caution is justified. Personally, I'd trade an increased likelihood of being hijacked for a decreased likelihood of being arrested for acting weird.

  8. I have never flown on an airplane and since 9/11, I don't ever plan to.

  9. I hope your presentation went well. I hope you are doing ok.
    I worry about my daughter traveling and acting "weird" too.

  10. I can imagine how stressful the travel is. What you are doing is a big deal, I hope people appreciate that. Autistics spend so much of themselves at times doing "normal" things and they usually get precious little credit for it.

    I hope your presentation goes just as you plan and that you will have many more opportunities to speak at conferences.

  11. Wow- you just gave me the most vivid insight as to what my son may be feeling during times of his heightened anxiety.

    Excellent post. Thank you.

  12. OK, I am not sure if this post was meant to be funny or if that was just a side effect. My son (4) is autistic. The first cartoon had me laughing. So many times I get the "Your son can't have autism, he speaks!". Just because he doesn't fit some preconceived notion about what autism "looks like" doesn't mean a thing. But the funniest thing was, I saw my OWN actions and behaviors in your story (especially about wondering about leaving fingerprints on the magazine and whether the writing looked like yours or not). I try and help my son understand this crazy world each day. Thanks for your help in trying to get this crazy world to understand HIM a little better!

  13. "Is it a disability to talk to oneself, to repeat things, to carry a toy bird, to stumble over curbs, stare into space, nod in response to questions and sometimes not even?"

    I dont think any of those things are disabilities, excepting, perhaps, stumbling into curbs. I hate it when that happens. I fell and got quite a bruise once because of my lack of physical coordination. It was embarrassing because I was with a group of my coleagues and an ex boss who was the psychologically abusive type.

    I take a supplement now that helps me very much with my coordination, amongst other things: Noopept.

    I find that I still have my autistic strengths, but in addition to my improved coordination I have less social feat, and a much better perception of people's emotions and intentions.

    I like having the cake and eating it too. <-- better at figurative speech too. Woohoo!

    I wouldn't want to be cured for anything, but improving upon my shortcomings while maintaining my strengths is something I am very grateful for since finding the Noopept supplement. Less confusion too! My spoken words come out easier and they make sense to others much more often. It's as though new neural pathways have generated, while maintaining the super/charged ones I already had developed due to being autistic.

    I'm more understanding and better understood, with the advantage of still being autistic for those things in which my autism helps me excel!

    I've become more adaptable but, at will, can be hyper-focused when I need it. That at-will part used to be missing before. I still enjoy swimming, but I feel at more liberty regarding the time and place. I'm more self-aware as well and interestingly, as such, more aware of others in ways I formerly ignored. I can catch a ball now too! Never would have happened before.

    I could go on, but this paints a bit of the "picture" I'm trying to convey.

  14. Bev, I love your depiction of what it is to be like in an airport or high-security place where there are watchful eyes 👀 constantly looking for anything that might not seem "normal", wherein any "irregularity" might be seen as posing s threat and therefore unwelcome, lacking inclusion.

  15. Years back, right _before_ 9/11 I was detained, stripped and frisked. Missed my plane. They were unapologetic. They said I seemed "agitated", "unsettled", "anxious"... Also, I was wearing a dark suit to a casual tropical place.

    They really taught me a lesson. "Home of the free" my rear end! They want everyone to confirm to the "norm"

  16. It's even worse even when travelling internationally. Customs, border patrol and migrations agents _hate_ "shifty eyes". They consider it to be "probable cause" for further action, questioning and detention.

  17. A world which generates fear for the normally unphased nonplussed NT can be terrifying for us autistics!


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