The hell of being asked questions.


I am not sure if people totally understand what they’re dealing with when they try to ask me questions. I’m part of a study right now. I am being asked which autism organizations I belong to. I have been trying for months to answer their damned question. They say they are asking things in open-ended ways so that they can get my idea of what’s important rather than theirs. Fair enough. But ask these questions and it’s like pouring gibberish into my brain and expecting sense to come out.

I don’t think people get it. I really don’t think people get it. I am sitting here trying to write this. I have been trying to write this for months. It’s a simple question and I want to answer it. I want to answer it. I want to give them the answer. The answer is in my head. And the more I push the closer I get to a full-bore out-of-control meltdown.

If I were going to die tomorrow unless I answered this question, I still couldn’t answer the question.

Hand me the belt that I used at the Autism National Committee conference and I will be able to tell you all about how I used it to get around, and in the process of telling you that, I will be able to tell you that I belong to the Autism National Committee.

Ask me randomly what autism organizations I belong to and it is random chance whether I will even be able to tell you I belong to the Autism National Committee. And that is only one of the ones I belong to. I only came up with that just now because the belt was near me.

You’re expecting words to trigger memory, and more than that, words to trigger a particular process for accessing a particular kind of memory on purpose, and that’s not a reasonable expectation of many autistic people. (I know autistic people who are baffled by the fact that this is a problem for me, but it’s no less real for their lack of this as a problem.)

And this is one of those assumptions that goes well into the zone of dangerous, because it can create any of the following scenarios in medical contexts:

“But you would have mentioned it if you were really in pain, starving, dehydrated, whatever. You can write essays, after all.” (The ability to write essays does not grant me the ability to conjure up words in response to situations on demand in specific ways accepted by some general social consensus I was never invited to.)

“The first time you mentioned pain is the first time pain became a problem.” (I had painful migraines — that seriously restricted my activities when they happened — for years before I knew how to associate what was going on with the notion of what a migraine was, and then put into words what had happened.)

“You never mentioned heartburn before you heard someone describing reflux, so you must have decided you had it when you heard them saying what reflux was.” (That’s not what the lab tests showed. I felt the sensation, often amplified by neuropathic pain into something truly agonizing, for years before I knew what to call it. And I remember having it since I was very young, my parents remember it since I was a baby. I needed the description to trigger any mention of it in regards to myself though, and that is often true of many things in my life.)

“You only mentioned part of the pain you were experiencing, so you’re not in any other pain.” (It’s the only part that words came up with right now, the rest is there, may even be worse, but I won’t necessarily mention it. This is how I got reflux treated before I got neuropathic pain — far more severe — treated, even when the neuropathic pain had me literally writhing around and moaning.)

So as usual, this isn’t just annoying, but dangerous.

Right now, the situation is just annoying though. I’m not sure people understand. I can’t do this to save my life — I have literally not done this to save my life, on several occasions. There are ways to get information out of me, but these questions will not extract the information, or if they do, it’s only over so long that by the time the information is out it’ll probably be past the deadline. Wanting to tell you makes no difference.

I know there are autistics out there who think that wanting to do things and not doing them is some kind of perverse unconscious self-hatred. How does a person explain this to someone who can just hear a question like this and remember everything they need to know? Any more than I could, before, explain sitting within feet of food and not being able to coordinate everything (by which I don’t just mean motor coordination) enough to eat it. This isn’t self-hatred, this isn’t some kind of backhanded attempt to injure myself, this is a wall I hit that can only be gotten around by not taking this road in the first place.

About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed. I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources. I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line). I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness. I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice. I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first. My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music. Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few. I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her. As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days). I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own. Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love. My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed. You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better. Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

14 responses »

  1. i get where this is dangerous for medical stuff, but for the survey can’t you just have Muskie answer that part for you? she should know what organizations you are in.

    i think the ‘communal brain’ is a good thing. we use it at our house: we each remember certain things for each other. sometimes we all forget, but not nearly as often as when only one person has each set of information.

  2. ps: (obviously) the ‘communal brain’ might not be any help with the medical stuff; as people can’t usually feel what each others’ bodies are feeling (except by noticing a behavior that they could recognise if it were familiar), things would have to get to the point of being said, before they could be remembered.

  3. This reminds of the “joke” of a person discovering that you’re a professional comic. The immediate response is “Say something funny!”
    (A working acquaintance actually got that question years ago from a LEO when being questioned at the US-Canada border.)
    My customary response to this sort of thing is “No, YOU don’t understand.” Verbalisation is part of the thought process, and without the ability to verbalise or denote, identification is impossible. (Besides which, you may be dealing with the half of the population that is below average intelligence.)

  4. Verbalization is not a primary part of my thought process, but it’s certainly a part of my communication process.

    And, actually, it’s often people who’ve been considered below-average in intelligence who do understand this stuff about me (probably in part because this sort of memory problem can easily get a person considered below-average in intelligence).

  5. Are these people asking this stuff verbally, audibly, in person or by phone to you?

    (Rather than e-mailing, or otherwise writing out their questions in text, to you under circumstances that don’t require any immediate response other than for you to write back at your own pace/convenience.)

  6. I can relate very well to this post. Sometimes I try to “let my mind wander” to all sorts of random thoughts…….searching for anything that will trigger memories or thoughts or words relating to whatever I wish to explain.

    I think I might have trouble reminding myself that others have this issue besides me, because I am in my own head (at times).

    I’ve gotten frustrated to the point of meltdown before………trying to explain something or even to figure out in coherent words in my own mind……..what I am thinking.


  7. In a way, I think you answered that question (that those people asked) with what you wrote here. Ask an open-ended, free-wheeling question, get a tangential associationally-thought creative answer. Kinda Zen-like, sorta-maybe.

    Open-ended questions about things which I’ve not thought about before tend to make my brain freeze up a bit too, and I’m maybe just on the autistic end of “normal.”

    I do think one of the hardest things for somebody to do is to appreciate and understand the thinking of somebody who just thinks very differently than he does

  8. What I mean, I reckon, is that if the people who asked you that question read what you wrote here, they might figure a way to ask you a question or two you might be able to answer, in such a way that they could find out what they want you to tell them, and not annoy you so much as you have mentioned.

  9. “So as usual, this isn’t just annoying, but dangerous.”

    No doubt. I can tell people before a panic episode what i want them to do…very few will actually follow my instructions. They ask questions as it’s going on, and unintentionally use my incoherence to escalate the situation.

  10. What are some of the ways that are successful in terms of getting information from you? My cousin has this problem, and these are some things that have helped:

    – putting objects nearby that might trigger the information
    – replaying/making sounds that might trigger it
    – drawing the question or answer

    Other suggestions from anyone reading this would be appreciated.

  11. i loved the idea that justthisguy suggested – forget abilites you cant always access. if you get asked a question answer it as crypticly or indirectly or artisticly as you can. its much more interesting and unique than standard answers. dont get me wrong i understand it must be excrutiatingly frustrating but i guess in the end youve gotta accept what youve got and be at peace with what youve not got (at least to some extent). this is something i am coming to terms with in my own life so i can at least to a small degree empathise with you. maybe focus on not going out of your head as well as focussing on improving the ease with which you can access recall.

  12. This happens to me very often! In foreign language classes, my problems doing this become strikingly apparent, as my instructor will ask me something like: “what’s your hobby?” in Japanese. I understand the sentence, but I cannot think of something just randomly. I usually end up saying, “uhhhhh….” for about 30 seconds to a minute, then the instructor moves on. Then, when we have a scripted skit, then I already know what to say, and am able to put effort into pronouncing things right. In fact, being in French I was the thing that prompted me to go from a 504 to an IEP.

    Every evening my dad will tell me what we have for dinner, all my options. Sometimes the options are not many. Yet, day after day, I can’t remember any of them. I am usually too disorganized when I go into the kitchen so that even though I look, I don’t really SEE anything, and I am still clueless about what we have or haven’t got (Much like the person who looks at their watch for the time, but then realizes that they have no idea what time it is – something many people, autistic and NT, have encountered).

  13. Yesterday I had one hell of a time comprehending speech. Not sure why…….everything was just off, and I had to say “what? what?” every so often…..I got tired of doing that and just nodded……fortunately it was not a potentially dangerous situation at all……just talking about everyday stuff…..errands we were going for…….I was with my housekeeper/former surrogate mom when I was little…..

    I love her, she’s been in our family for almost 20 years now.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s