All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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27 January 2010

World Autism Interviews: Amanda Baggs/Access to Quality Healthcare in an Autistic World

Amanda Baggs is a 29-year old autistic person who also has various cognitive and physical impairments. Her interests are cats, ethics, cats, cats, ethics, children's books, writing, ancient Egypt, ethics, and cats. By ethics, she means the application of personal principles in specific situations in a flexible manner rather than a rigid ethical code (because she figures reality is more complex than any ethical code could ever be). Most of her writing is about applying those ethics in various situations, and she participates in movements like disability rights because of those principles rather than the other way round.

E: Please share with me in what ways being on the autistic spectrum has effected your ability to obtain quality healthcare.

Amanda: I have a hard time knowing what symptoms need to be reported and I have a hard time reporting them even if I know they exist. My body language rarely matches what most people would expect given certain kinds of symptoms. I have frequently had serious medical problems neglected, either because doctors haven't known how to look for them, or because they didn't believe me when I told them. And since I have the particular appearance I do (I am not sure what aspects of my appearance cause it, but I know that people who see me often act like I'm not really a person), I have also run into neglect from doctors or other medical professionals who were flat-out prejudiced and didn't want to help me at all.

There is prejudice against autistic and other disabled people that says that our reactions to pain and other medical symptoms are actually behavior problems. Ideally, when a doctor has an autistic patient they should do a lot more objective testing to make up for communication or perception differences that make it hard for autistics to report exactly what's going on. When that has happened for me, the problem was invariably found in the end. But I have nearly died a disturbingly large number of times, because appropriate testing wasn't done and people assumed I was okay when I wasn't.

E: Please share an example that touches on the above mentioned issues.

Amanda: I began having a lot of pain that I couldn't really isolate as pain, and it began affecting my ability to function. By the time I did figure out something hurt, I couldn't locate it. I was sent to one specialist who didn't want to bother with me, and he actually slammed the door in my face after screaming at me that he was right about what was causing my problems (even though I wasn't, for instance, eating the foods he assumed were causing the problems). My staff person said she'd never seen that much rudeness from a doctor in her life.

Years later, I started doing things like lying down on the sidewalk, moving slower in general, not understanding as much of the things that were going on around me, and other things that showed something was really wrong. I was in even more severe pain, and I was very sick. It occupied so much of my mind that I couldn't understand it or articulate it very well. Some people around me got mad at me and thought it was a behavioral problem. A staff person finally realized I should go to the doctor, and took me there. I explained to the best of my ability (which wasn't a lot) what was going on. The doctor pushed straight on top of the area that was causing the worst pain, and I didn't move or say a word. She said that since I didn't respond when she did that, she was pretty sure it wasn't that, but that she'd send me to an ultrasound anyway. (And this was a decent doctor, she just didn't entirely realize the extent to which my reactions differed from other people.) The ultrasound indicated a severe problem. I got surgery very quickly, and the surgeon found that the organ in question had failed a long time ago. The surgeon ended up writing a nasty letter to the specialist who had slammed the door in my face.

I am afraid of doctors and don't tend to go to them unless I know something's very wrong. I am believed much less often on the first try, because it always seems to be assumed that I either don't know what I'm talking about, have bad behavior, don't have the right body language, am not worth treating even if I do have something wrong, or whatever other excuse for not believing me when I say something's wrong. And from what I've gathered from talking to other people, and reading the few things people write about such things, this is a fairly typical experience for an autistic person, for a developmentally disabled person, or for a disabled person in general. 

E: How does it make you feel when you reflect on your negative healthcare experiences?

Amanda: I get either really annoyed and pissed off at the doctors, or really scared that it will happen again (or will happen to my friends) and that this time it'll be too late or something.

E: At what time in your life did you feel that the people who you are closest to, and that the people who help to support you, fully understood your healthcare issues and struggles? Also, how did this transpire?

Amanda: As far as the people who support me, that happens gradually over time. The turnover rate in this field is so high that most of them don't last longer than a few years at most. Over time, with case managers and such, I've built up more and more information for them after they've seen me end up in the hospital, or gone to appointments with me, for long enough that they start to figure out what's going on more and more over time. The people I'm closest to have mostly had similar experiences so they already know about things like this.

One person who supported me had another client--at the same time that she was learning about prejudice in healthcare--where she took him to the emergency room and the doctors took one look at him and said "He won't live out the night" and refused to treat him. She had to scream at them a good deal to get them to take care of him. Several years have passed since that incident, and as far as I know, he's still alive. For years, he had a dislocated hip and all kinds of health-related issues. So she'd already seen it with him, and when it happened with me, she was the one who knew to take me to the doctor if I started acting different.

E: Please give a few examples of how you may act differently when a healthcare issue is the culprit.

Amanda: One thing a friend has told me is that whether the issue is pain, overload, or a medical issue, I seem to often become more slow in movements, my expressions get even flatter, I respond less quickly to other people, and I look more stereotypically autistic than before. It's like all the little ways in which I normally struggle to look a little more comprehensible to other people, fall apart. I also start being less capable of whatever I normally do. Like I might not be able to type, I might not be able to move my wheelchair, I might not be able to understand what people say, all those things that normally take effort, tend to fall apart because I don't have the energy left to do them.

I also often end up very much attached to any hard and solid object near me, like I grab onto it and won't let go for anything. (That's because the feelings in my body make me feel kind of liquid and floaty and if I grab something solid it makes me feel more solid myself.) One time when I was delirious and in and out of conscious awareness I "woke up" in a room where this guy was prying me off the bedrails that I had somehow entangled all my arms and legs in them trying to hold on really tight and was pressing on them with my face. I also might just stop doing whatever I'm doing wherever I am, and lie down. I notice with toothaches I often hit my face. It really depends on what the situation is. I have friends who can spot something wrong right away, but I don't know beyond what they have told me about how it is that they can tell.

E: What do you feel are some of the most damaging assumptions and myths about autistic people when it comes to healthcare and service providers?

Amanda: The absolute worst assumption is that we don't matter. That we have such a low quality of life that it's better to just "let nature take its course" with us if we get sick, whereas a non-disabled person would get treatment for the exact same condition. And that's an assumption we have in common with a lot of other disabled people, it's not unique to autistic people. Another myth is that we don't feel pain, or that when we do report something, we must be either mistaken or making things up for attention. Another myth is that if we are not responding to pain in a really typical way, then the pain is not there. (I remember reading in a book by Tony Attwood that two autistic boys with a very high level of expressive language, started acting a bit different and got taken to the doctor. One of them had a crushed testicle, the other one had appendicitis. Both of which are very painful conditions. And neither one of them said a word, and neither one of them reacted in typical ways to pain. I have had similar experiences.)

Another assumption is that if you don't find anything with the first test you do, then nothing is there. Often we have trouble reporting the exact location of pain, so it's necessary to do many more tests before you can figure out what's causing the problem, and often it seems like the tendency is to assume there's no problem rather than to assume we just haven't found the problem yet.

E: Let's end with a few questions about communication and interaction. What advice do you have for healthcare providers--or any person--who does not know a lot about communicating with autistic people? What do people need to keep in mind when communicating with individuals like you? Also, is there something that a lot of people do, and they have good intentions, but it is actually offensive or off-putting?

Amanda: One of the biggest problems I have with doctors and communication, is that they don't leave enough time for me to communicate. I communicate about three times slower than the average person, and I also take longer to understand things others say (even harder than communicating in words is understanding them) unless they're what I expected. I have actually had doctors walk in, ask a question, I start typing my answer, and they go "Call me when you actually want to communicate, I don't have time for this," and run out the door before I can say anything to them. Or "I have other patients and this is taking too long." I try to ask doctors now to leave extra appointment time, but only some of them do it.

Another thing they often do is expect me to process information very quickly, when that's not possible. They poke my body and say "Does it hurt here?" "Or here?" "Or here?" and by the time I've figured out whether something hurts or not, they've pressed five more spots on my body. Sometimes I can remember to do what they want and say "ow" or pull away if something hurts, but a lot of the time I can't figure it out in time.

One thing that I think doctors should do nearly across the board with autistic people, unless it's for some reason not possible or advisable, is to do more testing on us, not less. Because we may be able to say something hurts, but we may not be able to give the full picture even when we're trying. This is a problem if what we have is something that doesn't show up on tests, but it's better to just do as many of the tests as possible, because often the first or second or even third thing you think of isn't the problem, because we don't report things in the same standard way most people do.

One of the things people seem to be well-meaning about but that creates real problems, is get in my face, try to make eye contact, and then talk really loudly two inches from my face. In fact my very first doctor used to do that and my mom said my response was to sort of skittle all the way to the back of the room and try to hide in the corner. My reaction is only a little better right now. Talking louder makes it harder for me to understand. Getting in my face makes it harder for me to understand. Making eye contact makes it harder for me to understand. None of these things are good things in the end.

E: Thank you so much for this insightful, poignant, lovely interview. I appreciate your time.

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  1. Here's a supporting comment that someone shared with me via email:

    "Excellent interview, Elesia. Have had many similar experiences as Amanda in terms of source of pain being able to be located correctly (in fact, going thru that now), dr.s' not taking one seriously, etc."

  2. Oh wow, thank you Elesia and Amanda!
    This is such an important subject that needs more attention.
    I've been close to dying a couple of times for the same reasons Amanda describes, and I also got treated like absolute crap in hospitals, when I needed emergency treatment. It is really frightening to know that something like that can happen again in the future.

  3. Hi, Kowalski. Thank you so much for adding your experience to this post. If you feel strongly about helping to change healthcare for autistic people, please take a look at the survey linked at the bottom of the post. AASPIRE is very interested in creating functional tools for both autistics and healthcare providers. All my best!

  4. Before I knew I was autistic most of my experiences with doctors involved being ignored and told that I didn't know what I was talking about. It was so frustrating, especially since I didn't know that there was probably some type of body language or word choice that was causing them to (hopefully subconciously) discount what I was saying.

    A few years ago I started having stomach pain that I would happen to feel at random times. Most of the time though, I didn't actually feel pain but I knew I was sick. It took me many tries at the doctor to get them to scan my stomach because whenever they poked it, it didn't hurt. Finally I just started telling them that it hurt (even though I was lying) and they discovered a hernia. After my surgery, the doctor said that he had to repair 2 hernia's and they were the biggest ones he had ever seen.

  5. @sushipie: I am so glad that you finally received the care you needed. And thanks for adding your story, as it serves to educate others. :)

  6. omg ! This is Totally what happens to me !!! This is what hap0pened with all of my doctors (EXCEPT Hoffmann amongst all the doctors I have ever had in my life including USF, their other doctors, my Calif. doctors, Social Security doctors, and all the ADA and other state and federal agency and court access coordinators. I feel so lost - there I am struggling with a very severe savant form of Autism with severely disabling parts of it, and they are mis-treating me right and left just like this -- getting very wrong things and conclusions into their reports, whatever they are, etc. It makes you want to give up. Why do they torture Autistic people and treat us like are lives are too worthless to have any quality of life, our own choices, equal access everywhere ?

  7. corr: "hap0pened with all of my doctors (EXCEPT Hoffmann amongst all" = happened with all of my doctors (EXCEPT Hoffmann) amongst all

  8. @ Anonymous: thank you for adding your story. :)