SEMANTICS AND CIVILITY
In the biomedical community, we often throw around the word “cure.” When I use that word, I know what I mean and most other people who practice biomedical know what I mean. We are seeking to alleviate the dysfunctional aspects of ASD in our children. We will never alter the genetic makeup of our children, and to the extent genes make them autistic, they will remain autistic. I can live with that. But I believe that one or more environmental insults has acted in concert with my son’s genetic makeup to create stumbling blocks that keep him from using all of this gifts. I cannot believe I am wrong in trying to reduce the effects of those environmental insults.
My hope in writing that was to explain that the concept of a cure should not be perceived as a threat to those who view autism in terms other than dysfunction. I apparently did not do a very good job, as some folks on both sides of the biomedical-neurodiversity line apparently misunderstood my intentions and beliefs. I apologize for length of the following tome, but I need to make sure I am understood.
Not long after I wrote the above, Kevin Leitch, a blogger with whom I seldom agree but almost always respect (and who I have come to like on a personal level) referred to my words to contrast something attributed to Lenny Schafer on the Evidence of Harm listserve. Kev wrote that he considers Lenny to be a “borderline bigot,” and he even suggested that I should lead my own listserve to take the place of Lenny and the EOH board. Well, in the words of the always quotable William Tecumseh Sherman, a yankee who knew his limitations: “If nominated, I will not run. If elected, I will not serve.”
There is no need to discard the EOH listserve, and no need to replace Lenny. Like any other internet group, it serves a purpose of forming a collective wisdom among those who share a common interest or ideal. That does not mean that everything that is posted therein qualifies as “wisdom.” I am quite sure the same holds true for any listserve, including the AutAdvo group to which many in the neurodiversity movement belong.
I think language is important, but I think tone is equally important because it sheds much light on a speaker’s intent. And often the best means of determining the tone in a conversation is to examine the context of the words the writer chooses. For example, Kev, on a few occasions, has excoriated Lujene Clark for a comment she wrote to him on one occasion. Now, I can’t really say that I know Lujene, but I’ve exchanged emails with her in the past, and I’ve read much of what she and her husband, Alan, have written. She has always struck me as a very reasonable person. So I looked at the context of the message Kev found so offensive, and found it to be at the end of a heated on-line exchange. The strange part was the bile seemed to start with Lujene making an innocent mistake about Kev’s name. Otherwise, her remarks struck me as pretty reasonable, although I’m certain Kev took offense at the suggestion that his daughter might benefit from a biomedical intervention. In any event, the tone of Kev’s response to Lujene was inflammatory, as was his response to another person who left a comment but unfortunately misspelled one word for which Kev openly ridiculed her.
Yes, I believe that words are important, but I believe the tone of a conversation is equally important. The second post I made on the blog criticized the self-appointed defenders of skeptical science for the attitude that it was perfectly acceptable to introduce harshness into a debate so long as the insult was relevant. I still believe civility matters, but I also understand that it gets difficult to keep turning the other cheek.
Yes, Lenny Schafer and I often use different tones in our writing, but I’ve never been vilified like Lenny has. Now I’m sure that Lenny would be able to give one version of how the feud started, and those who speak ill of him would give a completely different version. I’m not particularly interested in who started the war of words. What I am interested in is sharing my observations about Autism, and, in turn, learning about autism from others who have something to say.
When Kev quoted me in his blog, he left out much of the context. Here’s part of what I said before the part Kev found so interesting:
When you get right down to it, we have far more in common that we have real divisions. The divisions are largely the result of semantic differences. As we continue to discuss things in a rational and respectful manner, we develop a common lexicon and we learn.
Anything worth believing in should be able to stand up to scrutiny. I firmly believe in what my wife and I are doing for my son through biomedical interventions. The respectful conversations I have had with those who think otherwise have not shaken my belief. I will continue to encourage others to consider walking the same path we are walking. But I have learned enough from my new friends that I am starting to recognize the limitations of what we are doing.
The word “cure” may not have a place in the common lexicon of the conversation between the biomedical and neurodiversity communities. But that is only because most members of one of the two groups do not see the need to recognize that word as necessary. So I try to be careful about using the word in that context. My semantic caution when writing in a particular context, however, cannot change my belief that my wife and I are curing our son.
How either community chooses to describe autism is irrelevant. Medical science does not define autism by a particular genetic makeup, but rather by a constellation of dysfunctional characteristics found in autistic individuals. By definition, if one permanently rids the autistic individual of the dysfunctional characteristics, they cease to be autistic. Ergo, the individual is “cured.”
The biomedical interventions my wife and I use cannot change our son’s genetic makeup. So to the extent his autism results solely from genetics, he’ll still have that. And if he remains autistic, I can live with that and be content knowing I did all that I could. That being said, I don’t think genetics alone explains my son’s ASD, and I don’t think he’ll have the diagnosis after we complete the intervention.
I freely admit that I am not a scientist. But I learned enough about science and the scientific method, and I have read enough of the emerging science as well as the countervailing studies, to understand that we are still in the early stages of discovering why some children are on the spectrum. I have also spoken with people of science for whom I have a great respect. I think I have at least a rudimentary idea about the nature of my son’s condition with which my family lives on a daily basis.
I am not sure that all cases of ASD were triggered by environmental factors like exposure to thimerosal. But the increase in diagnosis over the last few decades cannot be adequately explained by differences in diagnostic criteria and increased awareness. Something has been happening to our children, and, at least in the case of my son, I think I know what.
I believe my son was born with a genetic predisposition that impaired his immune system and left him susceptible to certain environmental insults. I believe the first insult came within hours of his birth when he was given his first vaccination for Hepatitis B, a disease primarily communicated through activities my son will not even be capable of engaging in for several years to come. That vaccination contained thimerosal, a purported preservative and purifying agent with a makeup, by weight, which is nearly half mercury. I believe that dose of thimerosal, and the bolus doses that followed in subsequent vaccines, produced some degree of neurological impairment, manifesting itself primarily by a mild development in speech delay. I believe, also, that the thimerosal my son received did further damage to his already impaired immune system, leaving him more susceptible to damage from live-virus vaccines. I believe that my son regressed to a point where he was diagnosed as autistic as a direct result of having received the DPT, Polio, and MMR vaccinations -- that’s seven vaccinations in all -- in a single day! I am not against vaccinating our children, but the way we go about it is absolutely insane.
I believe that the biomedical interventions my wife and I use are curing my son of the characteristics that led medical professionals to label him as autistic. I do not believe that any gifts he has received through genetics will disappear, and I don’t believe his genetic predisposition to certain environmental insults (e.g., heavy metals) will magically vanish. But I do believe we will permanently rid him of the damage that was done by prior insults. If we fail to cure him, I can find hope in the courage and dignity I see in my friends from the neurodiversity community.
On the question of “curing” our children, I gladly and proudly stand with Alan and Lujene Clark, with Lyn Redwood, with J.B. Handley, and with Lenny Schafer. I may disagree with some of them on certain particulars about autism (e.g., the emphasis that has been placed on thimerosal as a causative factor to the exclusion of other factors). And I may disagree with them as to whether the cure we seek is appropriate for all who share the ASD diagnosis because I am not sure that all ASD is triggered by the same environmental factors. I consider those disagreements minor.
Certainly my style is a little different from that of some of those other folks, at least when it comes to public pronouncements. As a good Episcopalian, I have always been better at personal belief than I am at evangelism. But that does not diminish my belief in the least.
So what common ground can we possibly find with the neurodiversity community? I still believe the common struggle we have to defend the dignity of each individual on the spectrum is just as important as our search for a cure. (Here’s a great post by Kristina Chew on that subject.) All of us who are parents have had to cry when we see other kids avoid or mistreat our children. We’ve had to roll our eyes at the ignorance of adults who can’t seem to distinguish autism from mental retardation. And we’ve had to fight school officials who don’t seem to understand their obligation to help our children. The battle against ignorance and injustice is worth fighting, and so I will gladly and proudly stand beside Kathleen Seidel and Kevin Leitch in that battle.
The fact that battle is necessary explains why I cannot agree with my friends in the neurodiversity movement that I should concentrate on healing the world and forget healing my son. I obviously disagree with them on the question of whether healing is appropriate and possible (and I hope I have stated that disagreement with sufficient clarity). The fact is that the world will not soon change to embrace those with autism. The differences between autistic individuals and neurotypical members of society is not based on a mere ethnic difference. Unlike ethnic diversity that will strengthen a society, autism can (not will or shall, but can) cut the individual out of society to an extent that contributing to, and benefiting from, society becomes problematic.
If you read what I have written before, it should be obvious that I am well aware of the contributions many autistic people make on a daily basis. But how many autistic individuals reach a high-functioning level. It is simply not an answer to reassure us that all children progress at different levels, but that they all learn to communicate; that attempted answer only raises two questions that are impossible to answer. Can anyone tell me when that ability kicks in, and can anyone tell me that my son will reach a certain level?
The problem we face is that, like it or not (and you can mark me down for the “not” side), our society has reached a point that children are expected to begin achieving immediately. We know too many children at school that are exceptionally bright, and yet they are years behind in grade level, or they are unable to pass tests required to advance to the next grade. I am not trying to have my son live out my dreams; I just want him to be able to utilize his talents and gifts.
Much has been written in various blogs about a site called “Getting the Truth Out.” As I have stated before, I was very moved by this presentation. A young woman lets us into her world, and debunks several myths. I respect her intelligence; I admire her courage; and I will gladly fight for her right to dignity and self-determination. But if anyone asks me if I want my son to face the same struggles this young woman does, my answer is an unqualified “NO.”
We are two communities that need to talk and work together on the issue of human dignity, but that cannot happen if our differences on the question of a cure distract us. Unfortunately, a productive dialog is impossible if we in the biomedical community do not resist the urge to try and shove our cure down the unwilling throats of people who have made rational decisions to walk a different path. On the other hand, those who differ with us need to avoid telling us how deluded they think we are, or how we really don’t have our children’s best interest at heart. And for God’s sake, don’t tell us we just don’t get it. We understand autism all too well.
Human nature compels us to question the motives of those who disagree with us. Sometimes it takes a conscious effort to move past that. Trying to cure our children, and defending someone else’s right to reject that cure are not mutually exclusive. Let the civil dialog continue, but understand from the outset: we will cure our children.