[Update!! Those who want a tool similar to this can download one for free from http://autismandhealth.org/%5D
I have heard many complaints from autistic people and other people with disabilities about their struggles in communicating with healthcare professionals, etc.. I propose a simple questionnaire for professionals to use. These would be standard intake questions, and the answers would be put at the front of the patient/client’s chart.
If you like this idea, please take this quick online survey!!!
If I get enough positive feedback, I will try to make this tool become a reality. I don’t know how, but I will try. Please help me spread the word.
(If you have trouble wti the survey, you can also comment here on facebook: https://www.facebook.com/notes/open-discussion-on-autism/suggested-questionnaire-for-healthcare-and-related-professionals/789224341139804)
[Here’s a lightly edited post from my personal blog, about me. I didn’t actually realize that I’d never managed to post it here before. Today is a “clear” day, the opposite of a day with brain fog, and my own record of my own experience seems foreign to me, but I know intellectually how often this post describes my life.]
Note: I’m sorry; this post got epically long. I spent a couple hours having bits of it drift around loosely in my mind when I was too blurry to do anything with them, then sat down as soon as the fog cleared and wrote for 90 minutes straight. This is the result, and I hope it doesn’t inspire an immediate TL:DR reaction in everyone!
Sometimes I dread the prospect of trying to hold down a full-time job. And lately I’ve been debating whether graduate school is really an option for me either. No “I’m sure you can do it” platitudes here, please, unless you’re someone who has known me in person long enough to make an honest judgment about it—I’m not looking for a morale boost here, just thinking out loud.
The problem is the incredible shortage of what I call “functional time” in my days. This has been an issue since my mid-teens, and a critical issue since the early 2000’s when I was working at the library. Last time I wrote about my battle with depression (leaving aside the question of whether that’s the correct or only diagnosis– I’ve also been known to refer to it as everything from Not-Exactly-Fibromyalgia to corruption of my farandolae by echthroi,), I spoke about its physical and emotional effects, but didn’t go much into how it changes my mental functioning.
The formal term for what I experience, I’ve learned, is “brain fog.” Granted, I’m never been good at applying my mind to things that bother me—like many people who suffer from clinical anxiety, I’ve spent much of my life since early childhood essentially shoving things under my mental carpet and then standing firmly on said carpet going “what thing under the carpet? I don’t know anything about anything under the carpet” with all the conviction of a dog who wants to assure you he didn’t steal that piece of steak off the counter. Trying to make myself drag these things out into the light and work with them is a task akin to building stable structures out of wet bars of soap.
But that’s not really what I’m talking about here, though I suspect it plays into my executive functioning struggles more often than I’d like to admit. No, brain fog proper is like being under mild sedation, or on one of those old-fashioned anti-congestion medications that leave you feeling as though you’re stoned without the benefits. The inability to intentionally process things is terrifying, especially to someone as intellectual as I am.
It’s hard to show an outside observer just how devastating this is. After all, I function more-or-less appropriately in daily life, and my lapses are written off as having “spaced” on something, on mere absentmindedness, on carelessness or lack of foresight. Sometimes I deliberately exaggerate certain quirks in order to pass myself off as eccentric rather than struggling. Sometimes I think about the term “absent-minded” and find it terrifyingly, tragically apt. I /hate/ when my mind is absent. My mind is what makes me me. Having brain fog feels literally as though a part of myself were missing.
I am reminded of a video we watched in a neuropsych class, an interview with a man with fairly advanced Alzheimer’s disease. He didn’t act like someone who was ill, or having mental problems. He was relaxed, at ease. He joked about his tendency to forget where he put his keys, or the names of his friends, but passed these off as minor difficulties. Only carefully targeted questions revealed the depth of his impairment—he didn’t know the day, month, or year (though he acted as though most people didn’t normally keep track of such things), and couldn’t recall a snippet of conversation from moments before. It was shocking and unnerving to watch how easily he was able to cover the evidence of so profound a dysfunction. Disturbing, too, was the inability to tell whether or not he believed his own cover story.
On the surface of it, my struggle barely shows. Through years of diligence, luck, and trying numerous strategies, I no longer miss too many appointments, and generally don’t show up more than 10 minutes late for work. I’ve learned to take my daily meds, though Dlarg help me if I have to take medications more than once a day, or within a relatively narrow window each day (“before bed” for me is easily a 5-hour span of time). I don’t often lose my thread in a conversation completely, though more and more, these days, I have trouble finding the words I’m looking for—words that I know, and know I know. Often, too, I let my attention wander briefly and fail to process what someone has said to me, and must ask them to repeat it.
I have trouble bringing up facts I know or things I’ve read—I have only the vague sense that there is knowledge that I should have ready access to. And oddly enough, I usually can pull up that access when I absolutely have to—for tests, for example—but not always at will. I feel as though my mind is a murky lake in which I have to wait for items to surface on their own time. I can fish about in the water, but my odds of coming up with what I need to are minimal. When I do recall facts, they are often flapping around unattached—I can’t remember where I learned them (this is, mind you, a fairly common failing in healthy and typical humans as well). It’s more bothersome when experiences of my own come loose from their context—I’ve eaten this food before, but where? Played this board game, but with whom? When did I start listening to this band? Was this conversation I recall real or in a dream?
Biographical information is something I’ve always struggled with, and especially with attaching any sense of timing to it. On a bad day, I find myself at a loss to answer questions like “when did I hold that job?” to within any closer than a 5 year span. When did I last eat? Talk to my mother? File my taxes? Pay my college account bill? Go to the zoo? My answers are on the wrong scale (right now the most specific I can get is, respectively: mid-afternoon today; sometime in the last 2 months; not this past year but almost certainly the year before that, though I don’t recall if I did state or just federal; sometime over the weekend and 3 payment cycles overdue; and, sometime in the past year but I have no idea when). And this is when I’m pretty clear-headed. For more depth I go looking though phone records, boxes of poorly sorted financial papers, ticket stubs or notes on my calendar or in my journaling. For that matter, something tells me I’ve written entries like this before, but I have no idea when or to what extent.
This is the point at which people start to say things that begin with “why don’t you just…” I’m not entirely averse to these suggestions—after all, I am a big fan of coping strategies and assistive technology. But I need you to understand at the outset that there’s no guarantee that what works for you, or for most people, is a method I can use. Even simple tools often presuppose a typically functioning mind in order for them to be useful, the same way they presuppose a person with thumbs. And sometimes the suggested solution is on the wrong scale for the problem.
Why don’t I just chronicle important life events? Because writing is exhausting, filing my writing is exhausting, remembering something long enough to write it is not always feasible, especially given the time constraints that brain fog puts on my days…. and knowing how and when to reread my writing is another puzzle altogether. I take photos, lots of them, but have no way to index them all, and they don’t always remind me of what I want to know. And besides—how do you know what things will be important in the future? The casual conversation, the chance meeting… I don’t know exactly when my fiance and I started dating, because I didn’t keep track of it at the time. I can pin our anniversary down to within about a month, but that’s all, and I have to reference job paperwork to get the right year. I have so little useable time… and when I’m at my best, I often spend it doing things like writing this entry, because I feel it’s important. The flip side is that taking the time to write this means falling behind on everything else.
Why don’t I set alarms, use a PDA or a phone, have alerts on my computer? I’ve found, oddly, that electronic reminders don’t work for me. I have to remember to set them, make sure to be near the electronic in question at the right time to get the alert and do something about it, not turn off the alert with the intention of doing the task and then forget all about it seconds later, or start and get distracted from the task partway through, learn how to use electronics (not easy for me) and develop a habit of doing so (even harder), and afford them in the first place. I know from experience just how likely this system is to end up failing at one of those points.
And so much of what I need to remember isn’t discretely schedulable enough for that—at least, not the way I live, with constantly adjusting time-tables, flexible work hours, a bedtime that changes drastically depending on how well I feel, etc. Or if it’s something I have to schedule well in advance like a doctor’s appointment or jury duty, I’d need not just one alarm but a series of reminders leading up to the day itself so I don’t make other plans, forget to arrange transportation until the last minute, etc. Those reminders themselves have to appear when I’m clear-headed enough to make use of them.
A paper calendar works better for me, because it lets me see multiple days at a time and try to form a picture of them in my head, of how they are structured. I fill in a lot of my calendar after the fact, jotting notes on what I actually did versus what I had planned, meds I took, symptoms, and so on. It’s far from providing me with a complete record, but it gives me enough of a skeleton that I can play archaeologist to my own past and piece together most of what I’ve been through.
Sticky notes, notes on the fridge or the door, are useless to me. There is, again, the trouble of remembering and having the spoons to put them up in the first place—the entire process can easily drop out of my head while I search for a pen—and then the need to be attentive enough to process them when I come across them. There’s that absence of mind (or mindfulness) again—I frequently, especially when tired, walk past major things without noticing them at all. Small yellow pieces of paper have no chance of penetrating the fog and actually registering with me as something to think about.
I do, in fact, have methods that work, but I’m hard-pressed to say what they actually are. Deliberate mindfulness is part of it—trying to spend more time mentally present rather than lost in thought. Forming good habits works well, too, though it takes time. Sometimes I can link a new task to an old habit—something that needs doing daily might get placed with my meds where I am most likely to see (and process) it every day, for example. Part of it is minimizing my commitments, prioritizing carefully, and not kicking myself too incredibly hard over the bill or three that I inevitably forget to pay on time. Sometimes I recruit friends to help me remember to do things like eat regularly.
Fog, blur, murky water, tenuous threads. Of these things my experiences are woven, carefully balanced, fragile things gathered in trembling hands, diggings in dark earth for signs of life, slippery thought-fish darting between my fingers—there, and gone, and gifted once again, like seasons that come and go, like dark and light. I cling, let go, and my world is swept away.