The difference between what’s normal for someone and what isn’t.

Standard

I remember being confused about something that happened during my first Autreat.

After Autreat, someone was talking about how surprised she was to see a particular person having a particular kind of trouble. (I’m being vague on purpose, the kind isn’t all that important and the people involved probably want to be anonymous.) I was surprised how focused she was on this, given that lots of people there (including me) had the same kind of trouble and she did not seem alarmed that the rest of us did. I asked her about it but she hemmed and hawed more than she gave an actual answer.

I eventually got an answer from a friend of hers that was more blunt: “Nobody looking at you expected you to be high-functioning enough not to have that trouble anyway.”

Oh. (Keep in mind at that point I regarded myself as being, and looking, extremely “high functioning”, and believed in functioning levels. This was awhile ago. But, more to the point, I didn’t always have that trouble to the extent that I had it after flying across the country, especially after getting stranded between flights.)

Today a guy came over who works for the nighttime emergency service I use in lieu of a roommate. Normally, they’re sent over here for bad situations. Often I’m some combination of very ill, in pain, and immobile. Apparently there’s some mandatory part of the program that involves them coming out and meeting us on an ordinary day periodically. And I’m beginning to see why.

Someone who mainly sees me during emergencies is going to have a much different understanding of what my baseline abilities are, than someone who sees me on an ordinary day. In fact, a person who doesn’t know me well could easily mistake the way I’m doing on a bad day, for the usual, and thus not really worry even if I’m showing clear signs of something being incredibly wrong.

This isn’t just true in medical situations, either. People who worked for this agency have disregarded signs of emotional stress on my part before because their presence caused me enough stress that they never saw me un-stressed. When my friend had to explain to them that normally I’m a fairly animated person and don’t sit meekly in a corner saying yes to everything unless I’m terrified out of my mind, they had trouble believing her.

So it actually seems like a really good idea to have people get familiar with what someone is usually like, even if what they’re normally going to be dealing with is emergencies. That way, they can tell the difference between something being wrong and something being normal for that person.

(BTW, the recent absence of posting is because I’m working on a video about my cat, and cats take a lot of time to film, at least in the contexts I’m trying to film her in.)

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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.

34 responses »

  1. I think that this touches on one of the reasons why staff who work on crisis stabilization units often have such a negative view of their clients. When people are having some kind of crisis, either personal or just the mere fact of having been taken against their will to a facility where they have no control over their surroundings, they are going to behave in ways that are not usual for them. And some of the people who work on these units never see their clients at their “best,” only when they are in this really terrified/angry/psychotic/defensive state. They never seem to make the connection that it’s the same person who is getting into a fight with them on the unit that is also, three weeks later, organizing the church social.

  2. People who worked for this agency have disregarded signs of emotional stress on my part before because their presence caused me enough stress that they never saw me un-stressed.

    Yeah. We’ve had this with people before, definitely. Including someone whose basic communication style caused us to get highly overloaded and stressed just from being around him a short time, and we’d have meltdowns, and he’d stand there watching us trying to either psychoanalyze us or asking that someone who knew us better to explain “why she does that.” I don’t know if he actually realized that what he was seeing from us wasn’t natural, or that it might have been more useful for him to not treat us that way than to stand back trying to dissect our actions and reasoning to pieces.

  3. “So, it actually…” etc. and what you wrote.

    Dang, that should be obvious to anyone of the meanest understanding!

    Maybe EMT-type people should be taught to ask something like

    “Are you (or he, or she) always like this? I dunno,somebody please explain.”

  4. Oh, on the cat video: In my experience, it takes lots of time to get even one good still picture of a kitty.

    The cat suspects that the human is up to something, and the human is not always successful in persuading the kitty that it’s perfectly safe, no problems, everything’s fine, don’t worry…

  5. Aye, unless you know someone it’s difficult to know how that person is if you only see them briefly in one setting.
    I’m looking forward to the cat video.

  6. ahhhh, that makes sense. saludos a la gata. (in my experience all cats understand spanish, except i met this one cat in Mexico, whose name was gringo, who didn’t. unless he was pretending.)

    anyway, yeah, it is a good idea. and one that probably a lot of us would not have thought of; i sure wouldn’t have.

  7. Rachel:

    Very true. Especially since involuntary commitment is one of the few things left that I think could cause me to get into a fight. I’m always afraid of that, because I’m not sure I could last the first few days of a hold without doing something or other (such as headbanging, which I don’t do normally these days but might do under stress, or attempting to physically intervene if witnessing abuse of another person there) that would cause staff to attempt to physically restrain me, nor am I sure I could avoid resisting them if they grabbed me. And given (a) what sorts of medications I tend to have life-threatening reactions to, (b) the sort of medications they tend to give in those places in those situations, and (c) the tendency to override drug allergies and sensitivities, I can see myself not living long in such a scenario, which only heightens the stress when I’m in it. And even if I were to survive all that, they would probably keep lengthening the hold based on my supposedly being a “danger to self” or “danger to others” in ways that I am not unless forcibly confined in specific ways.

  8. n.: I last lived in a mostly Spanish-speaking neighborhood, so Fey does in fact understand Spanish as far as I can tell, as well as English. She knows enough to run and hide if she hears “kitty” or “gatito” spoken by a child.

  9. Justthisguy: Even harder to get video of a cat doing a particular thing.

    In this case, impossible to get video of her doing her most important service-cat task because:

    1. It involves getting me moving when I’m freezing.

    2. She was trained on real-life situations, not made-up ones, so she knows the difference between freezing involuntarily and sitting very still on purpose.

    3. Even if I were to freeze, I would then not be likely to be able to work a camera, and any human around me would probably be more concerned with the immediate situation than with filming a cat’s response to it.

    I eventually had to settle for lying around with the camera pointed at me until she wanted something out of me. Her “getting me up out of bed when she wants something” routine bears at least passing resemblance to her “unfreezing me” routine, although it is much less thorough because she’s aware I can move at the time.

    I ended up instead asking someone who’d seen her unfreeze me to describe what it looked like.

    Aside from that I’ve managed to film her asking for food (and eating), asking for water (and drinking), cuddling, walking around, and bathing.

  10. If your cat understands spanish, I think you need to reassure her that her name “Fey” is not short for “feo”!!! Cats are very vain! (Good luck with the video. My cats hide when the cameras come out.)

  11. The lack of a baseline for normal behavior is a problem in a lot of medical situations. Even for neurotypicals, someone who is above the norm in a given area may have to be functioning drastically below their ability before a medical professional will notice or believe, because they will still fall in the “normal” range, even though severely impaired for their normal.

  12. I’ve occasionally seen the way you interact with your cat on your videos; and it’s uncannily like the way I interact with mine. You seem to understand what the cat is thinking. Most people never even consider that a cat might be thinking at all… Maybe it comes of being nonverbal, and knowing that communication doesn’t need to be speech.

  13. Sorry–I should note that I’m an Aspie, and use speech; that last comment sounded like I said I didn’t. It’s just kind of interesting to me that I interact with cats “on their terms”… reading their language instinctively… way better than any NT I’ve ever seen interact with a cat. Why do I have this skill with cats, and not with humans?

  14. I can’t wait to see the video when you’re done- I think it’ll be a really useful resource for service animal education in general, to be honest- a lot of people don’t ‘get’ the task thing, and don’t understand what a real task is. Fey’s is a great example of a non-traditional task that’s keyed specifically to you and your disability. That she’s a cat, not a dog, is just a bonus. :)

  15. I started interacting with cats that way while considered “verbal” actually. (Standard language in general, spoken or written, has never been my preferred mode of communication though.)

  16. I have always been confused by the terms of “high functioning” and “low functioning.” What do these terms mean exactly? I remember reading something by Donna Williams where she pretty much said that with autism…what you see is quite often not what you get. People on the spectrum may appear one way but actually be much higher or much lower functioning than what they show.

    We don’t have these terms for other neurological conditions do we? For example…would I be considered a high functioning depressive although I feel low functioning on many days. I just hide the fact that I feel so bad.

    I can’t wait to see the results of your efforts filming cats. I am a cat person myself but strangely after I found out I had MS I wanted to get a dog. So we have one cat and one dog now. They get along great so far.

  17. Yes, the terms are used for other conditions, but much more rarely. I find them pretty meaningless in an autistic person, except sometimes as sociological markers of how people are perceived and treated (but even then a single person can be seen and treated as both).

  18. The way I hear those terms is usually with the implication that “functioning” is the ability to accomplish tasks that most people consider important for success and happiness. So as you can see, pretty vague and open to bias.
    An example of a non-AS use is the term “functioning alchoholic.” This is usually used for someone whose drinking negatively impacts some areas of their life, like their marriage or parenting, but does not interfere much with their ability to hold down a job.

  19. I’ve talked about functioning labels much more thoroughly elsewhere on this blog, and the limitations of them around autistic people. One of the big limitations I notice is that there’s too many components of functioning, some of which are not outwardly observable, to class any one person as “high functioning” or “low functioning”. Although it’d be fine if it were just about one area at one point in time, but it never is.

  20. Tapetum: I think Amanda’s posts some weeks ago about her problems getting doctors to believe she’s having problems breathing relates to the baseline problem (I don’t know if you saw her post about how she finally got some equipment to measure what her baseline is and found that her baseline lung capacity is larger than average). And I imagine there must be other asthmatic people out there, both autistic and NT, who have the same problem.

    “Mom to Max”: I’ve seen the terms “high functioning/ low functioning” used with non-autistic children with mental retardation. I think used there to describe who is acquiring skills typically assumed to prepare them for independent living and who are not yet progressing in that direction.

    Though I agree with Amanda that these terms don’t have much meaning (in the sense that people usually use them) — perhaps in general, and perhaps ESPECIALLY when applied to autistic people.

  21. To clarify, it’s not lung capacity that’s different than usual, it’s more like lung force that’s different. I can force a lot of air out really fast, basically. That’s measured as what’s called “peak flow”, and my highest so far is 770. Whereas it “should be” (according to norms) something like 430, which would be near-emergency level for me.

  22. I have found that the terms usually pertain to ability to use verbal language. If someone on the spectrum can talk then they are more likely labeled as high functioning. My son has limited verbal abilities at this point in time so the world sees him as low functioning.

  23. Yeah, and people view me as having been “higher functioning” when I could speak (or appear to) despite the fact that the actual language functioning was considerably less in speech than in other methods (testably less in fact).

  24. “If someone on the spectrum can talk then they are more likely labeled as high functioning.”
    That’s often the case, but do they mean verbal as in “can talk” or as in “can have a conversation at the same level as someone else their age?” For example my older son is very verbal, but this is an example of his speech:
    Me: “T, open the cupboard door.”
    Ds1: “AAH Open cutup DOOR!”
    Me: (pointing to cupboard next to us): Open cupboard door.
    Ds1 opens the fridge door.
    Me: “Open the cupboard door”, gently guiding his hands to it.
    Ds1 opens the door.
    Me: “Pass me the peanut butter.”
    Ds1 gets the peanut butter jar and holds onto it.
    Ds1: “PEANUT BUTTER!”
    Me: “Peanut butter, yes. For peanut butter sandwiches. Give it to mummy.”
    Ds1 doesn’t hand it over. I hold out my hand. He passes it over.
    Me: “Thank you. Now open fridge.”
    Ds1 does so.
    Me: “Get bread and butter.”
    Ds1 gets the bread out and puts it on the side. Leaves the butter and shuts the fridge door.
    Me: “Pass me the butter”.
    Ds1 goes to get the cooking marge.
    Me: “Not that butter. THIS butter.”
    Ds1 passes me the cooking marge.
    Me: “Not that butter. Get the butter in the fridge.”
    Ds1: “A PEANUT BUTTER!”
    Ds1 realises and passes me the correct butter. I move to put the cooking marge back and he gets upset, thinking it’s needed for his sandwich.
    Me(after all is well): “I’m buttering the bread now.”
    Ds1: “A butter a BREAD!”
    Me: Shall I put the peanut butter on now?”
    Ds1: No reply.
    Me: “Do you want to help?”
    No reply from Ds1. I sign “help” and he signs “help” back.
    Me: “Come on, time to help make the sandwich.”
    Ds1: Come on, it’s time for a NAPPY CHANGE!”
    Me: “Not yet. Now it’s time for a sandwich.”
    Ds1: “A SANDWICH!”
    Me: “A tasty peanut butter sandwich. Help me spread the peanut butter on.”
    He gets hold of the knife and helps put some on. He can’t cut with the knife so I cut his sandwich up.
    Me: “Does that look yummy?”
    Ds1: “A TOM, A JACOB, A MUMMY, A DADDY, A FAMILY!!” (complete with Makaton signs.
    Me: Mummy and Tom and Jacob are here. Daddy is at work.
    DS1 repeats his last sentence and then shrieks loudly.
    Me: “You know your family. Take your sandwich through to the living room now.”
    Ds1 does so and starts eating.

    He has a lot of delayed echolalia and a lot of immediate echolalia and a lot of applying words to the wrong things based on a couple of word triggers.

  25. “Oh, on the cat video: In my experience, it takes lots of time to get even one good still picture of a kitty.
    The cat suspects that the human is up to something, and the human is not always successful in persuading the kitty that it’s perfectly safe, no problems, everything’s fine, don’t worry…”

    We used to have a labrador dog, and one of our cats liked to lick her face. One day, my father came over with a camera as she was doing this, but she stopped doing it. He got a few good pictures of her doing other things, and then said ‘you know, what I really wanted was a picture of you licking the dog’. Immediately, she went over and started licking the dog!

  26. oh thank you so very much! i want to start trying to do videos too. i am so behind the times. i want to start a multiple sclerosis diary. anyway thanks for sharing the link to your videos. i am finding myself thinking so much about the things you say here and trying to use this knowledge to try to connect better with my son.

  27. “We don’t have these terms for other neurological conditions do we? For example…would I be considered a high functioning depressive although I feel low functioning on many days. I just hide the fact that I feel so bad.”

    I’ve seen it used for Down Syndrome. Two contexts I can remember off the top of my head are: a) apparently autistic DS people are sometimes considered just ‘low functioning Down’s’ and b) one person was complaining about the TV show Life Goes On, which features a Down Syndrome man – Corky – saying that it wasn’t representative of DS people because Corky was high functioning.

  28. Another comment – I think low functioning autistics are those who are treated like they’re less capable than they are, and high functioning autistics are those who are treated as more capable than they are.

  29. Recently on the QIAT listserv, there has been a great conversation talking about making powerpoint based books for children with special needs so that there next year’s teacher can see what they are like. I really like the idea of having video and books to help share in this way.

    Personally, I just started a remnant book. It is a sort of scrap book that I can use to tell stories from. I learned about it from a young man who uses augmentative communication and is from North Carolina.

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