I have a depressing, socially-isolating disease

That subject line got your attention, didn’t it? Nope, I’m not talking about being Autistic. Autism isn’t a disease and what’s depressing and socially-isolating about it is the way others choose to react to it. I’m just fine with being Autistic.

But if you want to cure something, could you cure celiac disease? Now that’s a depressing and socially-isolating disease. If you could cure my hypernychthemeral syndrome while you’re at it, that would be just grand.

See, I’m staying with a very lovely family and I’ve barely had any human contact in days (And I want to make it clear that none of my current struggles are their fault! They have been nothing but wonderful, gracious, loving, generous hosts!!)  because whenever I live indoors, the hypernychthemeral syndrome (also known as Non-24-hour Sleep-Wake Syndrome or Non-24) kicks in and sets my sleep-wake times spinning around the clock. I showed up on my typical outdoor schedule: sleeping around midnight and waking before nine. That’s what my body naturally does when I live outside and stay away from light other than the sun or some firelight in the evening. It’s not a perfect schedule, but it’s stable and I’m very grateful that sleeping outdoors lets me stay in one spot on the clock like that.

Once I’m sleeping inside a house, with artificial lights in the evenings and walls between me and the sun, that little timekeeper inside my brain, the suprachiasmatic nucleus (SCN) doesn’t get enough of the right signals to function properly and my entire body becomes desynchronized, with all my body systems getting more and more separated from the others.

Think of it as lots of clocks – in my pancreas, my heart’s timing mechanisms, my blood cells, everywhere in my body – that aren’t so great at keeping time themselves so they regularly talk to my SCN to  make the little tweaks to their own clocks so we’re all running on the same schedule.  When I’m living indoors and the light signals are confusing my brain, the SCN doesn’t know what to tell all those other body clocks anymore and they all get farther and farther off course until something breaks. The thing that breaks is different for different people with Non-24. For me, it’s my metabolism that breaks first. I have diabetes that lays dormant when my SCN is getting the right signals to keep everyone’s clocks properly set and rages out of control when I get desynchronized. I carry around insulin but only need to use it when I’m living indoors.

That’s pretty socially isolating. I have to choose between living outdoors with a small pool of people to choose from (Sam’s Club has estimated that a million Americans live full-time in RVs. Those folks, plus the short-term friendships of recreational part-time campers, are my community as a person who has to live outdoors to preserve my circadian rhythms and health) or living indoors with rapidly-declining health in order to be close to the people I had already chosen and the people who have chosen me. I’m the only Autistic person I know who currently lives outdoors, so I get kind of lonely out there for more people who are more like me.

And, as it is, I’m indoors and socially isolated right now anyway because the Non-24 currently has me going to sleep at seven am and waking at one pm — off-kilter and not even fully rested. I am groggy from sleep as the family comes home from their day’s activities and by the time I’m fully awake and really ready to socialize, they’re all heading off to bed. At least I’m spending those long and empty nights quietly finishing the draft of my upcoming book, The ABCs of Autism Acceptance, so that’s a good thing.

And, fortunately, I’m not stuck at this point on the clock. My body will continue to drift later and later. I have estimated that I should be sleeping around five pm and waking around midnight when AutCom comes around. That’s good, because I have lots of work to do there and I will be awake during the time work needs to be done. But it’s still socially isolating because I will be falling asleep when the socializing starts and waking up to wander around, ghost-like and alone, in the small hours of the morning. Depressing and socially isolating, that’s life with Non-24.

And life with celiac is no better. I spent the last few days feeling pretty awful. I thought I was being so good about avoiding gluten, but I learned something new about celiac this week.

I’ve been doing food solo for years, so it was pretty easy to avoid getting “glutened” accidentally. I run a tight ship and I know what my body can handle. There are even some foods that are officially gluten-free but still give me nasty symptoms as if they did have gluten in them (I’m talking about you, Spam!) and I’ve learned to avoid those, too.

It was so wonderful to join in family meals here. Having eaten alone for so long, I didn’t really understand all that literary and religious symbolism about sharing food. It all sounds nice. I know how to draw upon the metaphors in my writing. But I didn’t really feel emotionally connected to those ideas until I started on this nomadic journey back in May and began to have opportunities to “break bread” (so to speak) with others.

My celiac didn’t flare up at my cousin’s houses or my parents’ house. Others in the family are gluten-free, too, so there’s a lot of familiarity among family members with the way I need to eat. But gluten-free eating is a new thing to the wonderful folks I’ve been staying with. They’ve really worked hard to learn what I can eat and cannot eat and I love them for that. But I got sick anyway and had to do some googling. I learned that I can’t eat from cast iron or Teflon-coated pans that have cooked gluten-containing foods. I learned that a grill doesn’t burn off the gluten stuck to it. And, most depressing of all, I learned that if someone dips mayonnaise out of a jar, spreads it on bread, then dips the knife back in, the whole jar is no longer safe for me to eat from.

I’m not eating with the family any more. That makes me sad.

And all that celiac anxiety is set on high right now. After I get gluten-sick, I get really weird about food. “Food is dangerous. Food is toxic,” my thoughts roll around, obsessing about food and dishes and utensils and crumbs in the bottom of silverware drawers and who might have touched what with what. I have food-related nightmares. I alternate between not eating until I get light-headed and rummaging around for something sealed and safe.

I miss family meals together. I am feeling depressed and socially isolated. And all my stomach-soothing medications are gone, so I’m doubly afraid to eat until I can go to the store again because I have run out of the stuff I need to help me out if I get sick again. Depressing and socially isolating.

The next time you feel tempted to pity me or someone else because we are Autistic, remember this: being Autistic makes me happy. Having celiac and Non-24 makes me feel depressed and socially isolated. There are a lot of people out there who try to scare you by describing autism as some sort of life-ending tragedy. Autism Speaks is the biggest culprit but they are by far not the only ones out there talking about us as if we are empty shells of depressing nothingness.

I am here to tell you that there are tragically depressing diseases that need cures and autism is not one of them.

If you want to cure something, find the cure for celiac so I can enjoy emotionally bonding food sharing with others without fear and the very real risk of illness. If you want to cure something so you can improve the quality of people’s lives and help them to be better able to connect with others and be self-supporting, cure Non-24.

Non-24 and celiac are huge burdens in my life. I can’t feel safe eating with others. I can only remain healthy if I sleep outdoors for the rest of my life. If you want to cure something, I’d be very grateful if you started with those.

But if you really want to help Autistic people, we don’t need a cure. We need supports. We need accommodations. We need acceptance. We have a lot of unmet needs and a “cure” for the way our brains are wired is not one of them. The only way you can “cure” the way a person’s brain is wired is to get rid of the person. That’s not something I want to happen to me or to any of the Autistic people I love.

Understand us. Help us the ways we need to be helped. Ask us what we want, what we dream of, what we hope for, what our goals are. Don’t rush in to “help” without knowing what we want and need. It’s not helpful to force things on us that are contrary to our own best interests. Don’t assume you know what our best interests are. Outside of things like not letting people run into busy traffic or stick forks in the electrical outlets, “for your own good,” is not for you to decide.

So, yeah, I have two depressing and socially isolating diseases and neither of them is autism. The things I really need help with  — food and sleep — aren’t in any way connected to the notion of “curing” autism. So listen to the Autistics around you as they communicate their needs, whether with words or in some other language. Don’t assume you know what we need. Help us meet our goals, not yours.


5 responses to this post.

  1. […] hour ago, as I write this) reading the most recent post Unstrange Mind put up on her blog, entitled I have a depressing, socially-isolating disease. In it she explains about how celiac and Non-24 (see her post for details) affect her in ways that […]

  2. {Virtual Hugs}

    Wish I could give those hugs in person, and sit up with you through the night. (I don’t have Non-24, but I am very definitely a night owl; there’s so much less of a sensory assault at night.)

    This post brought some thoughts to mind, and I’ve just written my own post that references it.

    :) tagÂûght

  3. Again I wake as the household tucks in to sleep. Although my cycle shifts at a relatively regular (though somewhat unpredictable) rate, psychologically it always seems these opposite-clock shifts take so much longer to move through.

    The quite night hours mean I get a lot of work done. If I apply myself, I may finish the book draft tonight. At any rate, I will surely be finished by tomorrow. Night living is great for the solitude writing requires.

    I will be glad to cycle back around to more realistic hours.

    I have decided to leave for AutCom early. ‘There is a place nearby I have long wanted to see. A day outside, hiking and swimming, followed by a night sleeping in my van and waking to the sun, should help with kicking my rhythms into place for the conference.

    So now it’s back to the book (with a little help from Monteverdi in the background) and I look forward to meeting many of you at AutCom in less than two weeks’ time.

  4. Posted by Dani Alexis on September 17, 2015 at 6:16 am

    I want to cosign the call for a celiac cure, for the same reasons.

    PS: Does this mean you’ll be at AutCom? Do I get to meet you finally? *yay!*

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