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.

Search This Blog

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.

Take action to help improve health care for autistic people:

21 January 2010

World Autism Interviews: Alex Cheezem/Applied Behavior Analysis

Alex Cheezem is autistic. He recently completed Nova Southeastern University's program in Applied Behavior Analysis and is presently engaging in supervised fieldwork, with approximately 250 hours remaining before he can sit the BCaBA exam. Alex's hobbies include reading Cochrane Reviews, trolling epidemiology journals for experimental methodology articles, and following autism research.

E: Please share a summary of your background, experience, knowledge, and training in relation to ABA.

Alex: I suppose my background and experience start when in my adolescence. While I was running the metaphorical gauntlet of misdiagnoses that many of us on the spectrum seem to experience, one of the "treatments" I was subjected to -- based on a complete misunderstanding of what was going on with me -- was a particularly incompetent form of ABA-based "therapy".

I have to clarify on this that I don't just mean that the people in question were abusive. They were using abuse as a substitute for skill and understanding, and their lack of those was pretty extreme.

That experience left me rather thoroughly traumatized, but I eventually got a sense of closure and moved on.

I studied ABA as part of my undergraduate psychology courses, and entered the postgraduate BCBA/BCaBA certification program at Nova Southeastern University in August of 2008. I completed the full BCBA coursework as of August of 2009. At present, I'm about 250 hours of supervised independent fieldwork away from taking the BCaBA exam -- the BCBA exam will have to wait until I get a Master's.

I've completed two semesters of practicum in ABA at the Mailman Segal Institute for Early Childhood Studies. Most of that time was spent working with the Baudhuin Preschool, which specializes in autistic children. I'm presently working on setting up supervised fieldwork, but running into a variety of delays.

E: Is the ABA approach for children who are on the spectrum regulated by a professional organization?

Alex: That's a misleading question -- there isn't a singular ABA approach for anything, much less for autistic children. That said, such approaches are supposed to be. I phrase it like that because the Behavior Analyst Certification Board really only has control over people who certify as behavior analysts, and not everyone who practices based on ABA does for a variety of reasons.

This can be benign -- for instance, psychologists often incorporate behavioral techniques into their practice; in that case, their practice simply falls under different authorities (and, frankly, stricter ethical codes). It can also be quite problematic.

The full situation is phenomenally complex, and doesn't lend itself to a brief answer.

E: What do you feel are the positive aspects and benefits of using an ABA approach with children who are on the autistic spectrum?

Alex: I think I'll need to take a step back and address what ABA and ABA-based approaches are. Modern ABA really started as a reaction to psychoanalytic theory, and its roots really show in a lot of places.

In essence, B.F. Skinner decided that the explanations based on inner processes and subconscious hypotheticals were responsible for a lot of the problems with psychoanalysis, and decided to go in the opposite direction. Contrary to a number of people's beliefs, he didn't say that those processes don't exist, but rather that they couldn't be directly observed and thus would be difficult -- if not impossible -- to study.

Anyway, several of the advantages of behavioral approaches to dealing with issues come from the fact that ABA basically ignores the mind and inner experiences and instead focuses on observable, measurable behavior.

How a behavior analyst practices -- or is supposed to practice, anyway -- is by measuring and observing patterns in behavior. Based on these patterns, they then make changes in that environment (including the behavior of the people in it) in order to exert prospective control over some aspect of people's actions.

There are obvious potential issues here, but discussing them doesn't really lead to an explanation of the advantages to ABA-based approaches.

Despite the best efforts of some truly gifted researchers, we still really haven't come to a practical understanding of autistic learning processes and how they differ from neurotypical learning. Since we don't have that understanding, the best we can really do in clinical practice is to acknowledge this.

What I'm trying to get at here is that ABA-based approaches don't require knowledge and understanding that we don't have. I'm sure that we'll develop better methods in time, but we certainly aren't there yet.

ABA-based methods are also extremely flexible. The same basic approach can be applied to getting a child to stop tantrumming at mealtime and to get him to learn arithmetic.

Finally, I suppose I should mention that the empirical support for ABA-based methods is generally better than that for any other type of autism approach available... although that is admittedly not saying much.

E: Explain the potential dangers, drawbacks, or negatives related to ABA-based therapies for autistic children.

Alex: There isn't exactly a shortage of them.

When you practice based on ABA, you are attempting to manipulate or control what someone else does… and there's a huge number of problems with this, mostly centered around the issue of someone deciding what is acceptable behavior for someone else.

Understanding behavior analysis does not mean understanding autism. Many behavior analysts basically think of autism as nearly interchangeable with mental retardation, certain issues in Angelman's Syndrome, and so on, mentally lumping all of the conditions together as "developmental disabilities". This is not accurate... and the confusion can lead to a number of problems.

Then, of course, there are the people who make inflated claims about just what practice based on ABA can or can't do, those who don't practice based on the evidence, and those who don't seek adequate training and/or understanding. Frauds and incompetents exist in just about any profession, but I think the ABA-based ones are particularly vile.

There's the dangers involving focusing on what a person does rather than on the person themselves. The technical language of behavior analysis doesn't help with this.

There's also the various research issues, like lack of placebo control, lack of blinding, lack of randomization in trials, lack of control for expectancy effects... I could go on and on here, but I tend to laugh inwardly when ABA-based methods are described as "scientifically proven". Beyond the more general fact that science doesn't prove anything (it works by providing evidence, and specifically by providing evidence against ideas, not for them), very few of the studies I've seen are even capable of providing a level of evidence that would be acceptable in, say, Circulation Research.

Of course, they provide a level of evidence that's much higher than most of the education research I've seen, so take that as you will.

E: What do you feel is most misunderstood about ABA in general?

Alex: Everything -- the list starts with just what ABA is and continues straight on from there. It often makes it nearly impossible to get legitimate criticism of ABA and ABA-based practice from people other than behavior analysts... even if the people writing the criticism have legitimate points.

For instance, I ran across a detailed criticism of "ABA" a few months ago that would have been almost entirely correct... if you'd substituted the phrase "Lovaas-type DTT" for every usage of the term "ABA". Suffice it to say that Lovaas-type DTT and ABA are most certainly not the same thing, even if Lovaas-type DTT does have ABA as its theoretical basis.

E: Thank you for your time.

Another blog post on this subject: The Language of Therapy