Things I haven’t done.


There’s a number of things I haven’t done.

Many people have written asking for copies of my “In My Language” video. I don’t know how to even begin to do that.

One person I’m privately corresponding with at the moment would probably like me to hurry up with my explanations of which things CNN got right and which things they got wrong. I don’t know when that’ll take place, but I’m working on a specific part of it, more to do with the reactions I get where people assume I share certain attributes with their children that I don’t.

One person sent me a release form and wants me to sign it and send it as soon as possible. It took me several days to print it out (not as weird as it sounds, I have to boot to Windows to print at the moment so that’s an extra step). I have told my staff to absolutely somehow force me to sign and send it tomorrow morning.

CNN themselves probably want a response from me soon. I’m working on it.

There are a number of topics that I have meant to write about that I can’t actually remember at the moment.

In the meantime, there is some stuff I would like to say. When I say this stuff, I’m not looking for emotional responses, I’m just trying to give a broader picture of my life.

I am not just autistic. I also have a number of other things going on, which I’ll just give the medicalistic labels for here. I have migraines severe and constant enough that in themselves they’d be considered severely disabling. I have wrist tendonitis (and I type to communicate, so that’s more a big deal than it sounds), a jaw that wants to dislocate and causes pain, and some sort of undefined knee problem (the right one pops out of place a lot and hurts when it does that), as well as general joint pain (all of which may or may not be associated with hypermobility syndrome, which I was told I have a few weeks ago). I have some kind of neuropathic or central pain. I have stamina problems (currently classified as chronic fatigue syndrome, but possibly associated with some of the other stuff I have going on). I have asthma. I probably have undiagnosed Tourette’s and OCD (I have tics, obsessions and compulsions, but I’ve never had it diagnosed as anything). I have stomach and bowel problems. I have PTSD. I have movement stuff that has been classified as catatonia. I have complex-partial seizures, although they’re really well controlled and only happen a couple times a year by now. I probably have brain damage from neuroleptics making the movement stuff more obvious. And a partridge in a pear tree. (A lot of these are lifelong or close to it, not recent.)

I’m not all that fond of the medical labeling system that seems to chop me up into little bits, when I feel like I’m only one person, and certainly not a collection of labels like that, it’s weird to see them all written out. I’ve probably even forgotten some because I think about them as individual parts that little. I’m not fond of the sort of boxes that people seem to assume come with the labels and try to squeeze us into. But those are, in medicalistic terms, the assorted things going on with my body.

I also have a life outside of the Internet. I have a human friend as well as a dog and a cat. I have things I’m supposed to be writing and doing. I have staff who require interaction with. I have the various daily activities that take a lot more “spoons” out of me than they would out of most people. I have a weekly class I take. I take my dog to the park. I have meetings I am supposed to attend and be capable of responding to and understanding speech. I have assorted short-term urgent things. I have a friend who sometimes requires assistance with things when her staff aren’t there (aside from the time we just hang out together). I have a family to keep in touch with. I have various long-term projects. I have a certain amount of necessary “downtime” where I am not processing things like language-for-meaning and so forth (if I don’t take that downtime voluntarily, it will happen involuntarily while I’m trying to do everything else, and even so it often does). I make videos. And all of this, both the parts that are traditionally “work” and the parts that are traditionally “recreation”, take a large amount out of me to the point where I am rarely getting all of them done.

All this to say a couple things:

Don’t assume something you see me do (or not do) is because I’m autistic, just because you know that I’m autistic. The reason that I have to move from foot to foot when I stand, for instance, is because my lower legs hurt a lot if I stand on them too long so I have to stay in constant motion when I’m standing if I don’t want to deal with pain. I doubt that’s because I’m autistic. I was just explaining that to a friend I’ve known over half my life (after we went somewhere while I walked and she saw this), and she was a little surprised.

Also: There’s a reason I’m not employed. There’s a reason I get so much assistance with things. There’s a reason that I don’t get to every single thing I’m supposed to do on any given day. I work really hard to do the things I do. I sit at my computer and type things with migraines that would send most people to bed, and I don’t mention those migraines unless they get much worse than usual (and usual is already pretty bad). Every day there are many things I both need and want to do and can’t get to. Much of the time I can’t even do the recreational activities I enjoy — those take a backseat to other things (plus I am, as described by my friends, almost outright puritanical at times about recreation and other “frivolities”, at least when it comes to myself).

I do not want the usual emotional reactions that come with litanies like this. But I would like a tiny bit of leeway about not getting to every single possible thing I could be doing, and the fact that even though I might be a good writer, I can’t just spit out words on demand on every conceivable subject. Not on my demand or anyone else’s.

Many of the things that are not writing, I’ll give an example today. I was writing a long letter to someone I know online, about my long and illustrious history of having a facade of “crazy” instead of a facade of “normal” when I was younger (which I suspect happens to a lot of us who can’t manage the facade of “normal”). So that was writing. Meanwhile I had a staff person coming up to me and asking me a lot of questions, which makes sense because she was new. I was hanging on to the writing by a thread already. In the background, all meaning was falling away from everything, including her words. I could only seem to gesture half the time by moving my arms up and down and hitting my legs. I was seeing more patterns of light and stuff than anything she meant to see, although she did keep trying to give me visual examples of what she was asking (since I could barely understand a word she was saying), which didn’t always work either because visual comprehension was on the fritz. I couldn’t read the letter I was writing to the online friend either, and I was getting strained with the generating of language and memory to write the letter in the first place. If I’d been a tiny bit more stressed out or nervous about the person I was writing to, I wouldn’t have been able to write an accurate letter at all, possibly any letter.

So basically I could write — barely — but everything else was going out the window to do it. I spent much of the time after the staff person left and I’d finished the letter, running around the house ticcing up a storm (I am glad my apartment complex has thick walls). I’m really overloaded tonight. I also have a wisdom tooth problem that was causing enough pain yesterday that I got my first experience of actually vomiting from pain (outside of migraines, where I’m not sure whether the vomiting is tied to the pain or not).

So… I really wish I could tell people a time to expect things from me that they’ve been needing or wanting or expecting. I don’t have it. Whenever I give someone a time frame, it’s very likely I won’t meet it. But I’m trying. And please keep all that in mind when wondering why I haven’t done something yet, or said something yet, even if it sounds really simple. Today I couldn’t do the “really simple” task (for someone with technically perfect hearing and sight anyway) of understanding what someone was saying or choosing which of two plates to have dinner on. This is very everyday for me, and thus not something I feel horrible or awed about or want others to feel horrible or awed about. I’d just like people to understand a bit of what goes on besides writing on the Internet and answering questions or requests from people on the Internet, and also a bit of the extended list of medicalized jargon used to describe my body, so that they don’t assume motives that aren’t there (or lack of caring) when things don’t get done.

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

26 responses »

  1. Wow, you do a lot. And you post a lot, too, more than any of the other bloggers I read. In fact, I was just thinking that you post a lot right before I read this post. You seem to be busier than I am these days.

    The part about not assuming that everything about you is due to autism hit home with me. I have tended to assume things like that about people a few times, and felt like a jerk when my assumption was pointed out to me.

  2. Hi Amanda. About the video copies, if you submit your video to Google Video instead of YouTube, then people will be able to download the video in the appropriate format. Just for your information. It is easier to distribute copies you want this way.

  3. Thanks for all you do. I know for sure you do more work in a day than most of the so-called employed people I know. You deserve a vacation.
    Let me know if there is anything I can do to ease the load.

  4. Well your ‘to do’ list looks a darned sight more interesting than mine does!
    Handy hint for the day – write the list at the end of the day of ‘everything’ then you have the satisfaction of crossing off all the things you’ve already completed. [yes I know that involves more writing but it’s worth it, and no it’s not cheating!]

  5. Re the chronic health issues, we’ve noticed that people tend to assume those things don’t exist if you don’t mention them on, like, a daily basis. Even if the reason you don’t mention them is because it’s not relevant to anything you’re talking about. And then one day if it suddenly does become relevant and you happen to mention it, people look at you suspiciously, just on the basis that you never mentioned it before. Like you just “made it up” on the spot to excuse yourself from doing something, or if you said “I have that too” in response to someone talking about their health/disability issues, that means you “copied them.” Or something of that sort.

    …and there’s also a strange thing we’ve noticed where, in the presence of staff-type people or people who’ve just had it explained to them that we have certain “special needs,” we suddenly become a lot less able to explain ourselves and have a lot more trouble comprehending/focusing on what they’re saying. There’s some kind of attitude that evokes more “stereotypical behavior” out of us than we normally display. Like there’s a script in their head for how we should act, or how our interactions with them should go, and that pulls certain reactions out of us totally involuntarily.

    …not sure if this is relevant to the topic any more, but it came to mind because of your mention of staff people.

  6. You forgot to include one thing in your diagnosis list: an excellent sense of humor. Even though this topic is just straight up facts and not intended to be humorous, the partridge in a pear tree comment was both.

    In times like these when you feel like everyone around you has some sort of expectation or another of you, perhaps yourself included, it might not be a bad idea to recall Donna Williams’ maxim of “simply be”.

    Which is most likely easier said than done, but nonetheless important for wellbeing at any level.


  7. Re the chronic health issues, we’ve noticed that people tend to assume those things don’t exist if you don’t mention them on, like, a daily basis. Even if the reason you don’t mention them is because it’s not relevant to anything you’re talking about. And then one day if it suddenly does become relevant and you happen to mention it, people look at you suspiciously, just on the basis that you never mentioned it before.

    I’ve noticed that a lot, too. And I rarely mention these things, at least not all out in a list like that. (Natalia often reminds me that a person who has a migraine 24/7 and only mentions it when it gets particularly bad compared to usual is hardly an excessive complainer.) And I do think people forget they exist, and that what I do (and don’t do) is heavily influenced by these things.

    I mean, my friend Laura rarely forgets these things. And I rarely forget all the things that go on with her body. But she and I have talked before about how other people do always seem to forget unless reminded, and of course take the reminder as an intrusion upon… who knows what.

    …and there’s also a strange thing we’ve noticed where, in the presence of staff-type people or people who’ve just had it explained to them that we have certain “special needs,” we suddenly become a lot less able to explain ourselves and have a lot more trouble comprehending/focusing on what they’re saying. There’s some kind of attitude that evokes more “stereotypical behavior” out of us than we normally display. Like there’s a script in their head for how we should act, or how our interactions with them should go, and that pulls certain reactions out of us totally involuntarily.

    What I get around highly staffy types is an extreme inhibitedness and submissiveness, and also a kind of stress that makes me not acknowledge them or interact with them as much as I normally would have, all of which combines to make me more stereotypical-looking. Laura has had to explain time and time again, “She isn’t always like this. Seriously. She’s a very interactive and dynamic person most of the time.” I just shut off somehow around staff. (I shut off that way around the CNN people, and the whole time was conscious in a terrified way that people would see this, and it would amplify their perceptions of me as stereotypical, and they’d think I looked like this all the time every day, but that there wasn’t a thing I could do about it because the terror had me unable to do anything but what I was doing.)

  8. Gah! Though “passing for normal”, and with almost no physical issues, I really wish there was some way to explain this problem to people.
    This kind of fairly unpredictable variable-functioning often feels to me like the most disabling aspect.
    And when you are NOT obviously disabled it seems like a self-punishing circle. Push through the non-functioning, get exhausted and really non-functioning and you might get some help, but lose years to illness and hospitals. Be realistic about how to handle your non- and low-functioning and it is truly invisible and you are just lazy and weird and stubborn.

    Though I wouldn’t want your impairments for anything in the world (especially not the physical ones – my one gimpy toe that only hurts moderately *some* of the time is already far too much for me), knowing that my functioning is just “normal” or “high” enough to keep me from ever gaining a disability label and/or any, however small, financial security, and most importantly help (even unofficial, from friends and family) with long-term solutions to make me function BETTER is extremely frustrating.
    Because I function too well, I’m doomed to repeat failure at most everything.

  9. Amanda, you do a lot for someone with health issues and pain. I know about chronic pain–I live it daily and it sometimes gets me very down. My grown children sometimes “forget” that I live every moment in pain and expect too much of me. It is not because they do not love me, it is just that often people who live mostly pain-free cannot fathom what it is like. I would love to be able to walk my dog around the block without pain and the extra pain that I would feel afterwards. Who wouldn’t want to sleep through the night without severe leg cramps and knee pain? I would like to be able to do basic activities without my legs giving -out and without the pain that accompanies my every where. We do what we can in our situations. It seems to me that you do a great deal despite all the obstacles. The world just will have to wait, while you do things at your own pace. You go girl!

  10. I suspect that your CNN publicity has, in some odd ways, kind of made you into a media performer, with an audience that has expectations of you. In particular, I suspect that a big bunch of scared and depressed parents have cast you as a role model for their kids. And that’s not a bad thing, really. But the fact that you share a label with some kid somewhere doesn’t make you an expert in what that kid needs. I would suspect that, the more people actually read what you’ve got here–and maybe follow a few of your links to other interesting sites–the less they will make demands of you. At least I hope so. Meanwhile, I hope you can manage to take it easy–and feel better physically.

  11. Yeah, there’s sharing a label with a kid, and there’s also the assumption that somehow I grew up with the exact same problems the kid did even if I didn’t. Like I always had communication trouble, but at the time I learned to type, I had the motor skills and a bunch of other things to learn really fast touch-typing. Some autistic kids need to be taught hand-over-hand and fade that back and by the end of all that they still end up with extremely slow, one-fingered typing as the best they can do. I also had more speech (regardless of communication content within it, and regardless of receptive language) than a lot of kids that I’m expected to be like.

  12. noah: Maybe the partridge is perseverating on the pears.

    What I’m wondering is, did the partridge come with the tree or did they come separately? :-)

    And, a side note … when I read through this, I didn’t particularly feel sympathy (because I know you don’t want it, and because I understand that, even though SOME of these things like the constant migranes etc. are things you might be relieved to get rid of, they’re still simply a part of your life, etc etc, like my own set of diagnostic labels are for me; and other labels are associated with things you wouldn’t want to give up, like in your “Watch it that’s attached” post).

    But then I got to the tooth ache and found myself going, “Ow, poor tooth, hope Amanda is able to get that taken care of soon.”

    What THAT says about me, I’m not entirely sure!

  13. I’m guilty of both the assumption ping pong and forgetting things about people unless reminded. Another factor of ableism? Almost like reminding people that you are a Not-Like-Me bugs them so they have to get defensive (probably unconsciously).

    I hope I haven’t put any demands on you, and I’m sorry if I have. I really appreciate the time you put into blogging.

  14. I have joint pain if I stand still too long as well. Since I also tire easily, my usual solution is to sit instead of standing. Oftwen I will crouch, balancing on my heels, in line-ups (which probably looks strange, but is more comfortable).
    On a side note, I hate line ups, partly because I keep moving into ‘other people’s space’ while the people behind me are moving into ‘my space’. And people stand too close together in lines in general.

  15. Your list of “medicalities” is my list of “why I couldn’t possibly have a blog.”

    Big lesson for me, ages 50-51: pay yourself first. When I’m counting spoons, I have to set aside *my* allotment first. When I have time for either a nap or one more task, I have to take the nap.

    Best wishes.

  16. Oh, and the inertia thing. By now I would hope you know I understand exactly what you mean. It evades me how anyone could possibly NOT find it normal to find it so difficult to do such simple things as sign a form. I have to constantly trick myself into these things, but my parents have sort of helped me with this when I was little. And not in a hugely forceful way or anything, although at the time it felt a bit that way.

  17. When I or my children fail to get things done that other’s are expecting I have taken the position of giving out a pretty basic standard reply of “sorry we did not get this done”. It can be very draining for me, the primary care giver, to explain over and over the long laundry list of reason’s which probably just seem like excuses to other’s anyway. I accept the fact that we will not get everything done that may be asked of us. I am not a perfect person nor have I met one. What I do understand is each person is unique.

    Thank you for sharing your own personal experiences.

  18. Re, inertia: as someone with ADD, I have a BIG problem with that one. It’s one of the reasons why it can be a big struggle to make myself do housework, or even seemingly basic things like make doctor appointments and so forth. But to most people it just looks like “laziness.” And if I try to explain why it’s hard (“Before I do X, I need to do Y, and Z, and A” all of which SEEM like simple things by themselves but FEEL overwhelming because each and every one of them involves first overcoming inertia, which is NOT so simple) then it just sounds like I’m “making excuses” and should just DO Y, Z, A, whatever, so I can get to X.

  19. Amanda: I am a college instructor in the area of special education and must admit to an incomplete knowledge and understanding of autism. Your short video was recommended to me by one of my students. I found it fascinating and quite illuminating. You describe your thought processes as different and not necessarily higher or lower, better or worse, than any one else’s cognition. I’m curious as to how you developed your typing skills and at what stage of your devlopment you discovered your abiltiy to write and communicate in that form. With your permission, I would like to suggest to my future students that they view your video and read your blog. You seem like a very remarkable yung woman.

  20. so that (# 24) explains why Athena wants to go to “bedoop” as she calls it before typing article summaries that are due in a few hours. Inertia……….she wants me to do them in the morning………..

    we’re both to blame for that.

    Ivan and Athena

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