Whose Planet Is It Anyway?

Wednesday, September 20, 2006

First, Do No Harm

In recent posts, Not Mercury and Kevin Leitch observed that it's hard to say much about causes and cures when we don't even have a clear definition of what we are talking about. And they're right. The autism debate often reminds me of the fable about the blind men and the elephant; they all touched different parts of the animal and then argued about whose description was more accurate.

The science simply hasn't progressed to the point where we can make definitive statements about the causes of autism (and we may be talking about many similar conditions with separate and distinct causes, given the breadth of the diagnostic criteria). In the absence of clear definitions and solid peer-reviewed research studies, we end up arguing from our personal experiences. Somebody will declare, "I have five autistic family members, so it can't be anything but genetic." Someone else will argue just as vehemently, "There's no history of autism in my family, and my child never had any autistic behaviors until he got a certain vaccine, so that must be the cause." And all around the mulberry bush we go.

What can be done when science gives us so little guidance? It's instructive to look at the teachings of an ancient Greek physician, Hippocrates, best known as the author of the Hippocratic Oath. He founded a medical school where he stressed the importance of thorough clinical inspection and observation. The Hippocratic Oath, still used in various modified forms today, requires physicians to seek only the good of the patient, to maintain confidentiality, to avoid conflicts of interest, to refrain from performing dangerous procedures as to which they lack professional expertise, and to "first, do no harm."

Hippocrates was a wise fellow. He understood that there are limits to medical knowledge and that we must proceed very cautiously when we go beyond those limits. Although modern medical science has advanced far beyond the simple herbal potions and crude surgeries of Hippocrates' day, a great deal of uncharted territory remains, and we still need to be careful.

Because so little is known about autism (and not all modern medical practitioners are as careful and ethical as Hippocrates), parents of autistic children should thoroughly research any drug, dietary supplement, conventional or alternative medical treatment, behavioral therapy, etc., that they are considering. Drug reactions and medical errors are a leading cause of death in industrialized countries. Although some "natural" diets and supplements may be safer than pharmaceutical drugs, no alternative treatment should ever be assumed to be risk-free.

The emotional effects of any treatment on a particular child, as well as the physical effects, should be considered. If a child repeatedly resists taking a particular drug or undergoing a particular treatment, it probably is not right for that child, even if it does not appear to be causing physical harm. In many cases, an autistic child who is experiencing pain or physical discomfort will not be able to communicate this fact effectively. Moreover, prolonged emotional stress can lead to painful physical conditions such as gut problems, as well as behavioral issues. Long-term emotional damage can result. To put it more simply, a child shouldn't have to grow up having medication forced down his or her throat every day. (I know a woman with asthma whose stepfather forced her to take her medication by standing over her brandishing a switch every day while she lay sobbing on the floor, which surely made her asthma much worse, in addition to the emotional trauma.)

The language used to describe treatments and therapies, as well as to describe autism in general, is another area where parents need to be careful. A child who is often described as sick, damaged, defective, and so forth, will come to internalize these views and to feel that he is good for nothing. If, on the other hand, the parents talk about the treatments and therapies as an ordinary part of life and avoid using disease terminology, the child is likely to have a much better self-image. Even when the child is not around, parents should be careful about the language they use to describe autism because it affects how society will treat their child. For example, Internet forums and other websites that dwell on the negative characteristics of autism are not just harmless venting like real-life conversations with friends; because they are read worldwide, they greatly amplify society's prejudices against the autistic population.

Parents also should consider carefully whether treatments or therapies are in fact necessary for the child's well-being. To the extent that natural behavioral differences are not detrimental, they should be accepted. Where behavioral problems need to be remedied, parents should consider whether the desired results can be accomplished by changing the child's environment, rather than changing the child to fit into a particular environment. Every child should be able to grow up believing that he or she is a worthwhile human being, not a problem to be solved.

First, do no harm.

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8 Comments:

  • I have only just in the last couple of months become aware of the autism civil rights movement, but it accords with my own misgivings about my ASD children. I kept thinking, if conventional psychological wisdom has it that the most important thing you can do as a parent is to give them unconditional regard, why is it OK to utilize treatments that constantly reinforce the idea that they are NOT OK?? My eldest son had auditory integration therapy as a young child. I guess I will never know whether this has helped him but he used to have enormous problems with sound sensitivity and now that has almost gone.

    By Blogger su, at 2:36 AM  

  • My ASD kid is incredibly thin. It's genetic. Xe went from being FAT at around 9 months all kinds of rolls of fat, to being noticably thin by age 7 years or so and ever since.

    Xe had some surgeries as a kid and teen and after the surgeries it was typical for this kid to look like a victim of starvation (almost), especially in the shoulders. So I was in a panic to get food into xem. Recently I read about a mercury mom trying to get some awful mixture of supplements and water or juice into a kid and the mom was making the kid sit in the kitchen and not leave until the kid had sucked up the noxious stuff... the kid was crying and had been there for a half hour or more refusing the gunk...

    I did that, not to detox the kid but to try to get some fat on the kid because I was afraid xe would die. I also tried to get wheat grass juice and stuff like fresh beet and carrot juice into xem (I was a health food nut at least part of the time.)

    My friend told me I needed to quit.. I told her she didn't understand. I was afraid the kid would die if xe didn't eat enough... especially calories.

    It was scary, but the reality sunk in that I wasn't helping the child's health any by making mealtimes a nightmare of "Eat more, you have to eat more, no eat some more, I said you have to eat another bite."

    Believe me, I consulted a dietitician the whole thing, there was no easy way to put weight on this kid or build up xyr nutritient reserves which were depleted after the trauma of surgery and weight loss. At some point parents have to back off and trust that it's best not to push too hard, in the long run.

    I'm not saying chemotherapy is a no no, that bone marrow transplants are over the top... but there are places where the push, push, push for health is unhealthy, and I think you said this very well, ABFH.

    By Anonymous Camille, at 3:51 AM  

  • My son is very skinny and I used to worry about his nutrition too, to the point of seeing paediatricians and dietitians about him. Nothing helped much but to let him eat when he wanted, try to keep a range of foods he likes available, and allow him to try new things when he wanted. Now, at 6, he has a fairly balanced diet, is still very thin, but in great health and I'm not worried about his diet at all.

    As for the rest of his development, I'm relaxed to the point of being lackadaisical. He has no 'therapy' just lots of play and opportunities to learn.

    By Anonymous sharon, at 4:59 AM  

  • I disagree with the idea that we can't know... There's actually a huge body of little-known evidence pointing towards how we become autistic. (It's one of my perseverations.)

    Unfortunately, I don't seem to be able to manage to describe all of it..grr...haven't written in too long!

    There's three basic things, anyway, so you could research if you wish:
    1. Certain autistic sensory traits require early fetal wiring to be altered. Some do just sense things as louder, for example, but others actually are sensing significantly outside the range "humans" can.

    2. Research is showing that autistics appear to often be mosaic or chimera -- result of something going odd in the very early fetal twinning process.

    3. Autism is so near-universal among people with certain rare sets of genetic twinning & neural tube (very early fetal) mutations that, like in Rett's, it's often not even considered a separate entity. The mutations are commonly seen in very "mild" form among autistics that aren't obviously physically disabled.

    About development and raising kids, I'm strongly in favor of accepting people as they are... Whether that's a super-energetic little boy that's feminine, a perseveration-prone girl that stims madly, an "other" with major arm mutations -- help them hone their strengths like any other person, but don't try to make them into something they are not.

    (Anyone seriously wondering why can look up Linehan's theory of Borderline Personality Disorder, a normally-undiagnosed issue common in autistics whose parents tried to rid them of their differences. It's so common that some of our supposed characteristics are actually symptoms of that, not actually autism. Or there's that depression and PTSD are also so common among the rejected set that symptoms of those are mistaken as autistic traits, or the disorders themselves are assumed to be "part" of being autistic.)

    Not ranting at ABFH, to be clear. I like her writing enough to have it in my RSS stack. :) This is just my writing style, though yeah, I'm also a very aggressive autistic bitch.

    By Blogger Moggy, at 5:41 AM  

  • Wonderful. Thanks for this ABFH.

    I started to write a long comment and deleted it by mistake so I think I'll just blog it instead.

    By Blogger notmercury, at 8:47 AM  

  • Su: Exactly right... autistic kids need unconditional regard just as much as any other kids. Positive attitudes from parents can be even more important for children who are not accepted by their peers. Although some therapies may be helpful, as you say, they shouldn't be done in a way that makes the children feel "not OK."

    Camille: It used to be fairly common for parents to make their kids sit at the table until they ate all their lima beans, etc. Now that so many people are overweight, parents aren't forcing food on kids as much as they used to do. I agree with you that it's best when kids are encouraged, but not forced, to eat healthy foods. (I still hate lima beans. Ew.)

    Sharon: Have you seen Joel's post pointing out how many things are called "therapy" when really they're just ordinary activities?

    Moggy: I'm not at all offended by your writing style, and you're quite right that it is sometimes possible to identify a genetic cause, such as Rett, or an environmental cause, such as maternal rubella. My point (and I think NM's and Kev's as well) is that overbroad claims should be avoided, such as "autism is always genetic" or "all autism is mercury poisoning."

    NM: Sorry about your comment, but I'm glad that I provided some post material for you.

    By Blogger abfh, at 11:32 AM  

  • Many so many years ago on a Sunday I was shut in a room with a cold dinner and told I could not leave the room until I ate my green cabbage.

    Well I did not eat my green cabbage and swore from that day that I would never eat green cabbage, now my parents to whom I swore that oath are both dead but never did they ever witness me to eat green cabbage, I do not eat green cabbage to this day because I gave my word and my word is my bond.

    Who won?

    By Blogger laurentius rex, at 3:27 PM  

  • Thanks again, ABFH.

    Moggy! Hi!


    Laurentius Rex, I had one of those you aren't leaving the table until you eat... something... when the ASD kid was about 4. Didn't work. At that time I was just trying to overcome xyr aversion to carrots or something. It was dumb. I lost.

    When I was in the eat-calories battle, I didn't make xem sit at the table extra time, just made the short time xe sat at the table miserable. I probably carried glasses of milk-shakes and stuff around the house encouraging just a sip, now drink the whole thing...

    I like cooked cabbage, green or red.
    The ASD kid would rather die than eat an egg or cooked carrots, for example. I can't eat liver, or anything with caraway seeds in it... I think I'd die first if those were the only foods available.

    By Anonymous Camille, at 5:17 PM  

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